My mother stepped into the room holding a mascara stained tissue. “He is doing OK. The doctors said they got it all and that he was going to be fine. Joseph, do you want to go see your father?” Well, of course I wanted to see him, but I want to see dad before the brain surgery, not after. I want to see the man who never took a day off of work, who never got sick, who knew all the answers to Trivial Pursuit.
I took my mother’s hand and walked down the hall of Cornell’s neuro-surgery wing. Upon entering the room I was awash in sunlight that was streaming in through the westside window. The heat felt good on my cool skin. And there in the bed sitting up lay Dad though it looked nothing like him. I stood at the foot of the bed for a moment and surveyed the scene. His head was shaved for easy access to the cranium. Staples then ran from the top of his head forward to the highest portion of his forehead and then back to his left ear. His face was completely purple from the nose up. His eyes were swollen as if he just lost a prize fight. I stood there at the foot of the bed for a long moment and felt this cold clammy rush to all of my exposed skin. I made my way around the bed and my mother quickly got a chair for me. “Sit down, honey, you don’t look so good.” Um, Mom have you seen dad lately?
My father had a brain tumor the size of your fist that was wrapping itself around his left retina. It was benign, but I don’t see how that word applies considering what I surveyed that day. Oh, it’s a friendly tumor!
My father did turn out to be fine. Even today, twenty some odd years later you can barely even make out the scar. But the lasting impression from that day is that Dad isn’t impervious to the outside world. That mortality does apply to him too. That maybe he won’t know who the king of Prussia was in 1772. Every child comes to this realization at some point and it is a sobering moment after years of being intoxicated on childhood innocence. I thank god that Max was too young to remember these last 3 weeks of me in such vulnerable states.
There are two good friends with whom I work that were unfortunate enough to lose their fathers over the last few months; one through illness and another through bizarre happenstance. Neither more tragic than the other. And it is for this reason that I dedicate this post to all the fathers. You are forever invincible in our hearts.
~Joe
Post-op #1: 24 days
Post-op #2 11 days
Monday, October 31, 2005
Thursday, October 27, 2005
Scatching the Itch
I recommend looking for the rack with the out-of-season clothes. This usually allows for many options in Marshall’s. As an example, today I ended up behind the shorts and t-shirts in the men’s section. I waded through ladies’ pants suits and the woefully inadequate shoe department and on to the rack with the shorts. It was here that I indulged. First it was nonchalant as my eyes darted back and forth. I started with the right knee and before I knew what I was doing I was scratching my crotch as if I were washing laundry in the river. Moments (or hours later) my eyes rolled forward again just in time to catch a horrified woman in her 70’s with a shopping cart filled with control-top fishnets. I smiled and slinked away.I suppose I should give some explanation beyond my baseline depravity. You see, one of the things they don’t tell you about with heart surgery is the shaving. The body shaving. For those that know me, you know that I’ve got a fair amount of body hair; more than average but far from Wookie. And if natural selection played out with hospital visits, those with less body hair would fair quite a bit better. For my operations my entire chest and abdomen was shaved, which I expected. What I didn’t expect was to have a 4 inch strip on the inside of my right leg shaved from the ankle to the knee. Both of my thighs, as high as they went, were also shaved. It seems they wanted to have access to the veins in my legs if the surgeons decided they needed them while they were inside me. Additionally, many of the tubes I had inside me were taped to my thighs so I wouldn’t accidentally pull them out if I rolled over. Inevitably the hair grows back in but not without its trials and tribulations.
And this is how I found myself in the clearance section of a discount retailer with my hands trying to satisfy an insatiable itch.
In all I was there 15 minutes. I was exhausted. I found Allison coming out of the changing room. She put Max and I in the backseat of the car and I went home to take a nap…and scratch.
~Joe
20 days post-op #1
7 days post-op #2
Wednesday, October 26, 2005
Tomorrow
Tomorrow I will shave and shower.
Tomorrow I will sort the mail and pay the bills.
Tomorrow I will survey the fridge and lament its contents.
Tomorrow I will curse the neighbor’s dog while praising mine.
Tomorrow I will savor the twilight between sleep and consciousness.
Tomorrow I will curse the neighbor’s dog while praising mine.
Tomorrow I will savor the twilight between sleep and consciousness.
Tomorrow I will hold Max tight to my chest while Maggie licks my feet.
Tomorrow I will notice how the leaves changed and how little the grass grew.
Tomorrow I will notice how the leaves changed and how little the grass grew.
Tomorrow I will have coffee with Allison and look forward to washing the cups.
Tomorrow I will see the same dust bunny in the corner and pass by it yet again.
Tomorrow I will do these things because Tonight I am home.
Tomorrow I will see the same dust bunny in the corner and pass by it yet again.
Tomorrow I will do these things because Tonight I am home.
Tuesday, October 25, 2005
Monday, October 24, 2005
Getting sick/hurt strategically.
At the rate Max is growing he'll have a beard like mine by this time next week.
The health machine moved pretty slowly today. The echo that was supposed to happen by noon didn't occur until 4:00pm by a radiology tech named Shar. That name and the pink highlights should have been warning enough that she wasn't going to be gentle. Don't get me wrong, echos are harmless, basically an unltrasound of the heart. But this was the first one I would categorize as uncomfortable. Perhaps one of Shar's 13 cats peed on her bed again last night because she found just the wrong spots inbetween my ribs to jam the "wand".
The physician's assitant apologized about not being able to take the tubes out until tomorrow 8:00AM because as she said, we don't remove tubes after 4PM, "just in case something happens we want to be sure the right people are here to help." And she has a point. It isn't as if this is a world renowned hospital or anything.
Please, if you take nothing away from this blog, take this:
DO NOT GET INJURED OR ILL AFTER 4PM ON WEEKDAYS OR ANYTIME ON WEEKENDS....There. You have been duly warned.
The Good News
The results of the echo showed no appreciable gain in volume compared to the echo immediately following the second surgery. This means Dr. Gillinov and his team did what was needed to close up what was leaking. Thank you, Dr. Gillinov. In fact he told me that during the surgery they (he, 4 other surgeons, a few cardiologists and the rest of the team) injected more cream into my thymus, put me almost perpendicular to the ground and proceeded to watch me (while split open presumably) to see if there were any other leaks. There were none and today's echo proved all to be well.
So tomorrow I am keeping my fingers crossed that we will get our walking papers. We'll let you know for sure when we know and when I get over the Homeric sorrow sure to accompany the loss of my tubes, wires and tethers.
~Joe
15 days post-op
The health machine moved pretty slowly today. The echo that was supposed to happen by noon didn't occur until 4:00pm by a radiology tech named Shar. That name and the pink highlights should have been warning enough that she wasn't going to be gentle. Don't get me wrong, echos are harmless, basically an unltrasound of the heart. But this was the first one I would categorize as uncomfortable. Perhaps one of Shar's 13 cats peed on her bed again last night because she found just the wrong spots inbetween my ribs to jam the "wand".
The physician's assitant apologized about not being able to take the tubes out until tomorrow 8:00AM because as she said, we don't remove tubes after 4PM, "just in case something happens we want to be sure the right people are here to help." And she has a point. It isn't as if this is a world renowned hospital or anything.
Please, if you take nothing away from this blog, take this:
DO NOT GET INJURED OR ILL AFTER 4PM ON WEEKDAYS OR ANYTIME ON WEEKENDS....There. You have been duly warned.
The Good News
The results of the echo showed no appreciable gain in volume compared to the echo immediately following the second surgery. This means Dr. Gillinov and his team did what was needed to close up what was leaking. Thank you, Dr. Gillinov. In fact he told me that during the surgery they (he, 4 other surgeons, a few cardiologists and the rest of the team) injected more cream into my thymus, put me almost perpendicular to the ground and proceeded to watch me (while split open presumably) to see if there were any other leaks. There were none and today's echo proved all to be well.
So tomorrow I am keeping my fingers crossed that we will get our walking papers. We'll let you know for sure when we know and when I get over the Homeric sorrow sure to accompany the loss of my tubes, wires and tethers.
~Joe
15 days post-op
Sunday, October 23, 2005
These are the Days of our lives in General Hospital.
Met with two different doctors today and things are looking positive though I won't allow myself to jump ahead at all in the process. Turns out my triglicerides number in the fluid needs to be below 100 and is currently at 67. Three times a day a nurse comes in and collects the fluid from each of the containers labeled "1" and "2" respectively. So if the trend continues and the echocardiogram shows no further accumulation of fluids then tomorrow they will remove the tubes from my chest. They are actually in my stomach area just below the center of my rib cage which makes using my abs more than uncomfortable. I envision the scene at the end of Braveheart when William Wallace is finally captured. William Wallace woulnd't flinch at this though. And what will get me through it is that it should be the last painful thing to manage before I get the hell out of dodge.
I've been here nearly 3 weeks have had 2 showers 3 decent meals, many laughs and smiles from Max, innumerable hugs and kisses from family, countless heartfelt calls, made the bed 0 times, made no meals, feel as frail as an 80 year old, cursed out "kids" twice, thought about Maggie the super bull dog 53 times, took out the trash 0 times, read the comments on this blog 81 times, have watched 105 hours of television (30 minutes of which included Oprah), shaved 0 times and have said, "I can't believe how much grey I have in my beard" 12 times.
So that's just a sampling...when I'm feeling more industrious I'll give you more details, but despite football being on the tube today I am behind my tv quota and therefore need to go.
Hope to have good news for you all tomorrow.
Joe
~15 days post-op
I've been here nearly 3 weeks have had 2 showers 3 decent meals, many laughs and smiles from Max, innumerable hugs and kisses from family, countless heartfelt calls, made the bed 0 times, made no meals, feel as frail as an 80 year old, cursed out "kids" twice, thought about Maggie the super bull dog 53 times, took out the trash 0 times, read the comments on this blog 81 times, have watched 105 hours of television (30 minutes of which included Oprah), shaved 0 times and have said, "I can't believe how much grey I have in my beard" 12 times.
So that's just a sampling...when I'm feeling more industrious I'll give you more details, but despite football being on the tube today I am behind my tv quota and therefore need to go.
Hope to have good news for you all tomorrow.
Joe
~15 days post-op
Saturday, October 22, 2005
Golden Arches and Clear Liquids
Today gets us one day closer. I saw two doctors who while both noncommital seemed to be the most positive since they've arrived on the scene. The Echocaridogram I had today showed a "trivial" amount of fluid which is expected after a surgery like this. Also, I still have those tubes draining out of my chest so a little more coming out and no, I'm not letting anyone adjust these. They will likely come out Monday after my body has had a few days to heal around them. So that will be a another enjoyable experience.
But the take away here is positive. The fluid doesn't appear to have any more triglycerides in it and therefore the most recent surgery appears, so far, to be a success (everyone, please knock on wood).
My diet was changed again briefly, just long enough to get my hopes up and then burried under an ashen colored salisbury steak (I still don't know what the hell this is).
After breakfast (chicken broth, cranberry juice and orange jello) the two doctors came in and both said I can have a regular diet again....and this makes a big difference now b/c the floor I am on actually has decent food. I was supposed to have Filet and Shrimp for dinner if you can believe that. I was allowed to have a lunch of turkey salad, tortoloni soup, salad and chocolate ice cream for dessert. Oh, thank God. At least now I can look forward to meals.....That was until dinner arrived and it was: Beef broth, orange jello, raspberry sherbert and diet gingerale. "Well they must have this wrong" I said. "I'm getting filet and shrimp." "I'll go let them know," declared Allison as she walked out of the room. Moments later she returned with the nurse who began an apologetic explanation. "I'm sorry Mr. Salvati. Dr. Gillinov wants you to stay on this diet until we get the results back from your drained fluid, so you need to stay on the clear liquids diet." "Just so you are clear, a "Clear Liquids diet" is not a diet. It is fasting and I am not protesting anything here. Can I just have a damn ham sandwich?
You know the reposnse already so I drowned my sorrow and dissapointment in a couple of Darvaset and am looking forward to an Ambien shortly.
As an tangential to the whole food thing, take a read below...I personally can't believe this.
The following press release was posted on the Cleveland Clinic's web site in September 2002. Take a quick look at it.
http://www.clevelandclinic.org/heartcenter/pub/news/hot/mcdonalds9_02.asp?firstCat=1&secondCat=429&thirdCat=526
Now to me the fact that the number one heart center in the world would want to be on the same press release as the icon for the unhealthy American diet is one thing. What is even stranger is what I saw the day I arrived here.
I had a full day of tests with a break for lunch and during that time I searched out the cafeteria. There was quite a bit to choose from: a decent salad bar, an "Internation Corner" which either had stir-fried rice, rice and beans or paellea. Apparently the only thing eaten outside the US is rice. Then there is your proverbial deli bar, sodas, and meal accessories like pretzels, chips, etc. But, if you chose not to partake in any of the usual offerings the clinic did have partners which offered other options.
Starbucks - Who wouldn't want a strong good cup of Joe while in a hospital
Subway - Jared lost something like 800 lbs so that must be good for you right?
McDonald's - Yep. The golden arches. The subject of the movie "Supersize Me" The imitaded restaurant in the movie "Coming to America". In all of its glory it presents itself like a dining oasis in a desert of healthy options. Big Macs, fries, Double Quarter Pounder with cheese, Filet-o-Fish (which makes it neither a filet nor a fish) and the ever popular McNuggets. How they raise chickens in those same 6 shapes I'll never know.
Am I the only one who finds this a little strange; A McDonald's on the first floor of the Heart Center at the Cleveland Clinic? Is it meant to keep business up? ( Board Meeting: Damn it, George, these quarterly numbers are in the toilet! We are either getting the message across too well about heart disease or we are losing them to competitors. We need to think outside the box. Get that clown from McDonald's on the phone ASAP.) Maybe it is a going away present..You'r heart is healthy again. Stop by the McDonald's on your way out to treat yourself...oh, and here, don't forget your free supersize coupon for coming to the Clinic.
Whatever.
~Joe
14 days post-op
But the take away here is positive. The fluid doesn't appear to have any more triglycerides in it and therefore the most recent surgery appears, so far, to be a success (everyone, please knock on wood).
My diet was changed again briefly, just long enough to get my hopes up and then burried under an ashen colored salisbury steak (I still don't know what the hell this is).
After breakfast (chicken broth, cranberry juice and orange jello) the two doctors came in and both said I can have a regular diet again....and this makes a big difference now b/c the floor I am on actually has decent food. I was supposed to have Filet and Shrimp for dinner if you can believe that. I was allowed to have a lunch of turkey salad, tortoloni soup, salad and chocolate ice cream for dessert. Oh, thank God. At least now I can look forward to meals.....That was until dinner arrived and it was: Beef broth, orange jello, raspberry sherbert and diet gingerale. "Well they must have this wrong" I said. "I'm getting filet and shrimp." "I'll go let them know," declared Allison as she walked out of the room. Moments later she returned with the nurse who began an apologetic explanation. "I'm sorry Mr. Salvati. Dr. Gillinov wants you to stay on this diet until we get the results back from your drained fluid, so you need to stay on the clear liquids diet." "Just so you are clear, a "Clear Liquids diet" is not a diet. It is fasting and I am not protesting anything here. Can I just have a damn ham sandwich?
You know the reposnse already so I drowned my sorrow and dissapointment in a couple of Darvaset and am looking forward to an Ambien shortly.
As an tangential to the whole food thing, take a read below...I personally can't believe this.
The following press release was posted on the Cleveland Clinic's web site in September 2002. Take a quick look at it.
http://www.clevelandclinic.org/heartcenter/pub/news/hot/mcdonalds9_02.asp?firstCat=1&secondCat=429&thirdCat=526
Now to me the fact that the number one heart center in the world would want to be on the same press release as the icon for the unhealthy American diet is one thing. What is even stranger is what I saw the day I arrived here.
I had a full day of tests with a break for lunch and during that time I searched out the cafeteria. There was quite a bit to choose from: a decent salad bar, an "Internation Corner" which either had stir-fried rice, rice and beans or paellea. Apparently the only thing eaten outside the US is rice. Then there is your proverbial deli bar, sodas, and meal accessories like pretzels, chips, etc. But, if you chose not to partake in any of the usual offerings the clinic did have partners which offered other options.
Starbucks - Who wouldn't want a strong good cup of Joe while in a hospital
Subway - Jared lost something like 800 lbs so that must be good for you right?
McDonald's - Yep. The golden arches. The subject of the movie "Supersize Me" The imitaded restaurant in the movie "Coming to America". In all of its glory it presents itself like a dining oasis in a desert of healthy options. Big Macs, fries, Double Quarter Pounder with cheese, Filet-o-Fish (which makes it neither a filet nor a fish) and the ever popular McNuggets. How they raise chickens in those same 6 shapes I'll never know.
Am I the only one who finds this a little strange; A McDonald's on the first floor of the Heart Center at the Cleveland Clinic? Is it meant to keep business up? ( Board Meeting: Damn it, George, these quarterly numbers are in the toilet! We are either getting the message across too well about heart disease or we are losing them to competitors. We need to think outside the box. Get that clown from McDonald's on the phone ASAP.) Maybe it is a going away present..You'r heart is healthy again. Stop by the McDonald's on your way out to treat yourself...oh, and here, don't forget your free supersize coupon for coming to the Clinic.
Whatever.
~Joe
14 days post-op
Friday, October 21, 2005
Quick Update
Allison apparently did an excellent job recounting our latest surgical exploits.
Last night was rough. Woke up around 2:30AM with pain that wouldn't let me go back to sleep. It was like going through the same surgery twice. But they think they got all of the leaks and tomorrow we'll have another echocardiogram to find out.
They had to break the original 7 ribs they broke for the first surgery so that was fun.
I have pain in those ribs and my side when I breath deeply...they say this should go away soon....I told them I should go away soon.
My feet don't hurt anymore but they are severely swollen and a lovely shade a blue.
If things stay positive from this point on the last painful experience I should have is the removal of the drainage tubes in my chest. They are smaller than the one they used for the open heart surgery but now there are two. I feel like cyborg.
Last note: On my diet decathalon.....they switched things again. I am now on a "Clear Liquids" diet. This means anything you can see through. The broad spectrum of choices include:
Last night was rough. Woke up around 2:30AM with pain that wouldn't let me go back to sleep. It was like going through the same surgery twice. But they think they got all of the leaks and tomorrow we'll have another echocardiogram to find out.
They had to break the original 7 ribs they broke for the first surgery so that was fun.
I have pain in those ribs and my side when I breath deeply...they say this should go away soon....I told them I should go away soon.
My feet don't hurt anymore but they are severely swollen and a lovely shade a blue.
If things stay positive from this point on the last painful experience I should have is the removal of the drainage tubes in my chest. They are smaller than the one they used for the open heart surgery but now there are two. I feel like cyborg.
Last note: On my diet decathalon.....they switched things again. I am now on a "Clear Liquids" diet. This means anything you can see through. The broad spectrum of choices include:
- Tea
- Water
- Jello
- Beef Broth
- Ginger ale
- Popcicles
- Cranberry Juice
- Italian Ice
So, as you can imagine I've been indulging quite a bit. Not even Mom could cook like this.
Joe
~14 days post-op
Thursday, October 20, 2005
Thursday night's "Survivor"
Hi everyone! I am making another cameo appearance until Joe is up and out of bed (he promises he'll be back tomorrow).
His surgery went very well this morning...here are the details:
A large team of surgeons and cardiologists gathered today at 6:30am to open Joe's chest back up along the initial incision made only 13 days ago. With a bit more blue dye and the presence of the half and half surging through his veins, they were able to pinpoint the general location of the hole in the thymus and put in a few stitches. Then, for good measure they put in a few more and topped it off with some sort of glue substance to make doubly sure they closed it off. Then, as Dr. Gillinov explained to me on his post-op call, they all stood around for 40 minutes and just watched this tiny little vessle (no wider than a strand of hair) to see if it would leak. It didn't.
After sewing him back up, they put him in the ICU for a few hours and I escorted him back to his room at 5pm this evening. Other than being a bit loopy from the drugs (starting sentences and then falling asleep before he finishes his thought) he's feeling good. The pain in his feet is gone and we are incredibly hopeful that this is the last hurdle he will have to face here at the Clinic. Please God...let it be over.
At this point, we anticipate he will be observed through the weekend and could potentially be home early next week.
On a side note...one of my happiest memories of these past 16 days is of this past Monday night when Joe and I sat at the computer here on G71 and read all of the hilarious comments made by many of you in response to his "play along with my low fat diet" blog entry. We laughed harder than we had in a long time. For that, I am so grateful.
And finally, because I'm a proud Mommy, I have to fill you in on my precious baby boy. Max is growing like a weed!!! His feet are hanging over the end of his carseat (which he has spent WAY too much time sleeping in over the past few weeks) and his smiles have turned into small giggles and "coos". Talk about grateful...he has truly been our saving grace and has allowed all of us a perfect diversion from the stressful hours normally filled with waiting and praying.
And now, I must get back to the room to my amazing husband...a true Survivor. We have a "date" to watch tonight's episode of the reality show that makes 40 nights in a South American aligator infested jungle look like a walk in the park.
~Allison
13 days post-op
His surgery went very well this morning...here are the details:
A large team of surgeons and cardiologists gathered today at 6:30am to open Joe's chest back up along the initial incision made only 13 days ago. With a bit more blue dye and the presence of the half and half surging through his veins, they were able to pinpoint the general location of the hole in the thymus and put in a few stitches. Then, for good measure they put in a few more and topped it off with some sort of glue substance to make doubly sure they closed it off. Then, as Dr. Gillinov explained to me on his post-op call, they all stood around for 40 minutes and just watched this tiny little vessle (no wider than a strand of hair) to see if it would leak. It didn't.
After sewing him back up, they put him in the ICU for a few hours and I escorted him back to his room at 5pm this evening. Other than being a bit loopy from the drugs (starting sentences and then falling asleep before he finishes his thought) he's feeling good. The pain in his feet is gone and we are incredibly hopeful that this is the last hurdle he will have to face here at the Clinic. Please God...let it be over.
At this point, we anticipate he will be observed through the weekend and could potentially be home early next week.
On a side note...one of my happiest memories of these past 16 days is of this past Monday night when Joe and I sat at the computer here on G71 and read all of the hilarious comments made by many of you in response to his "play along with my low fat diet" blog entry. We laughed harder than we had in a long time. For that, I am so grateful.
And finally, because I'm a proud Mommy, I have to fill you in on my precious baby boy. Max is growing like a weed!!! His feet are hanging over the end of his carseat (which he has spent WAY too much time sleeping in over the past few weeks) and his smiles have turned into small giggles and "coos". Talk about grateful...he has truly been our saving grace and has allowed all of us a perfect diversion from the stressful hours normally filled with waiting and praying.
And now, I must get back to the room to my amazing husband...a true Survivor. We have a "date" to watch tonight's episode of the reality show that makes 40 nights in a South American aligator infested jungle look like a walk in the park.
~Allison
13 days post-op
Wednesday, October 19, 2005
Milking as much as they can out of me.
Disclaimer: This post is being written while on Darveset after a long day.
Maybe it is because I am in a customer service business but it will never cease to amaze me how poor most people and instutions are at managing expectations.
Much to my dismay, I did not recieve any pain killess prior to going for the lymphangiogram. No verset, no phentenol, not even damn leather strap to bite down on. "Oh, the dye is cut with 50% lanacaine, a topical analgesic that will numb you as it goes it" says the NURSE who did the injections. F-ing great. Not only is it not Dr. Griesen who is doing the injecting, but it is a nurse who isn't much for negotiating. "Don't worry" she says, " most people say they feel a little pinch and then its over." At this point I am already down in radiology on a gurney watching this woman unwrap the syringes. It is an open area with stations partitioned only by curtains.
Moments earlier this boy of about 10 came in with his parents. They moved into the station directly across from me. And I thought, "Damn it!" I can't make a run for it if the kid is sitting still. Granted, he wasn't being stuck with needles, but he seemed happy as clam (never understood this analogy but will use it nonetheless).
So I re-engaged the joyless nurse. "How many injections do you need to do? One, two?" "Actually, no. We need to do an injection between each one of your toes, so I guess that makes it 8." "What?!!" "Don't worry. It'll be quick and it won't be that bad." "Tell me nurse...when was the last time you were on the recieving end of this treatment?" "Well, I haven't but this is what people tell me."
Just for the record: There is no way in Hell that anyone who undergoes this feels "just a little pinch". You want to know what it feels like? It feels like getting a needle shoved inbetween each one of your toes. That's how it F-ing feels!
But wait there's more! What I also wasn't told was that after the injection the Dr. then needs to make an incision in one of the vessels in my foot and inject more dye. Oh, Happy Days!!!
The good news is that for the next 2 months my will be the same shade of green as the 18th hole at Augusta. Also, if I shed any tears or sweat, they will both have a blue tint to them. This is like X-Men One when the senator get's turned into that gellatinous mutant. (If you saw the movie you'll get it.)
So my feet are still swollen and I'm going to head to bed soon, but I am yet to share any news of consequence, so here goes. If you've been skimming, now is the time to read. The dye DID reveal a small leak in the thymus, but it was not well situated to undergo the second part of the procedure (through the liver). So what is plan B?
I'm so glad you asked. Tomorrow morning at 7:00 I will be wisked away once again to the nether regions of the hospital. Dr. Gillinov is going to open me up again through the same incision he created for the mitral valve repair. He is then going to try to suture the offending gland. That's right ladies, and gents, another surgery. It should last about an hour an I have been told the recovery will be nowhere near as rough as the original heart surgery, but at this point, who the hell knows.
The only funny part of this whole thing is that this evening I was told that I had to change my diet. This time they want me to eat as greasy food as possible. By doing this, when they go in tomorrow, they should see more than a drip from the thalamus. So, I ordered: tortollini with alfredo sauce, a sirloin steak, fresh cut fries, and half a glass of olive oil to be sopped up with bread. Somehow they didn't think this was enough so they started bringing me a juice glass full of whipping cream every two hours that I had to finish. Ever bet someone that they can't drink 1 gallon of whole milk in an hour without puking? If not, you can make some good money while betting the bravado. It can't be done, but by midnight this evening I think I will have ingested 1 liter of whipping cream.
I will be in the ICU again tomorrow night so look for some sort of update from Allison, who by the way, is a rock. Honey, I love you with all my triglicerides.
~Joe
12 days post-op
Maybe it is because I am in a customer service business but it will never cease to amaze me how poor most people and instutions are at managing expectations.
Much to my dismay, I did not recieve any pain killess prior to going for the lymphangiogram. No verset, no phentenol, not even damn leather strap to bite down on. "Oh, the dye is cut with 50% lanacaine, a topical analgesic that will numb you as it goes it" says the NURSE who did the injections. F-ing great. Not only is it not Dr. Griesen who is doing the injecting, but it is a nurse who isn't much for negotiating. "Don't worry" she says, " most people say they feel a little pinch and then its over." At this point I am already down in radiology on a gurney watching this woman unwrap the syringes. It is an open area with stations partitioned only by curtains.
Moments earlier this boy of about 10 came in with his parents. They moved into the station directly across from me. And I thought, "Damn it!" I can't make a run for it if the kid is sitting still. Granted, he wasn't being stuck with needles, but he seemed happy as clam (never understood this analogy but will use it nonetheless).
So I re-engaged the joyless nurse. "How many injections do you need to do? One, two?" "Actually, no. We need to do an injection between each one of your toes, so I guess that makes it 8." "What?!!" "Don't worry. It'll be quick and it won't be that bad." "Tell me nurse...when was the last time you were on the recieving end of this treatment?" "Well, I haven't but this is what people tell me."
Just for the record: There is no way in Hell that anyone who undergoes this feels "just a little pinch". You want to know what it feels like? It feels like getting a needle shoved inbetween each one of your toes. That's how it F-ing feels!
But wait there's more! What I also wasn't told was that after the injection the Dr. then needs to make an incision in one of the vessels in my foot and inject more dye. Oh, Happy Days!!!
The good news is that for the next 2 months my will be the same shade of green as the 18th hole at Augusta. Also, if I shed any tears or sweat, they will both have a blue tint to them. This is like X-Men One when the senator get's turned into that gellatinous mutant. (If you saw the movie you'll get it.)
So my feet are still swollen and I'm going to head to bed soon, but I am yet to share any news of consequence, so here goes. If you've been skimming, now is the time to read. The dye DID reveal a small leak in the thymus, but it was not well situated to undergo the second part of the procedure (through the liver). So what is plan B?
I'm so glad you asked. Tomorrow morning at 7:00 I will be wisked away once again to the nether regions of the hospital. Dr. Gillinov is going to open me up again through the same incision he created for the mitral valve repair. He is then going to try to suture the offending gland. That's right ladies, and gents, another surgery. It should last about an hour an I have been told the recovery will be nowhere near as rough as the original heart surgery, but at this point, who the hell knows.
The only funny part of this whole thing is that this evening I was told that I had to change my diet. This time they want me to eat as greasy food as possible. By doing this, when they go in tomorrow, they should see more than a drip from the thalamus. So, I ordered: tortollini with alfredo sauce, a sirloin steak, fresh cut fries, and half a glass of olive oil to be sopped up with bread. Somehow they didn't think this was enough so they started bringing me a juice glass full of whipping cream every two hours that I had to finish. Ever bet someone that they can't drink 1 gallon of whole milk in an hour without puking? If not, you can make some good money while betting the bravado. It can't be done, but by midnight this evening I think I will have ingested 1 liter of whipping cream.
I will be in the ICU again tomorrow night so look for some sort of update from Allison, who by the way, is a rock. Honey, I love you with all my triglicerides.
~Joe
12 days post-op
Tuesday, October 18, 2005
Keep your lymph nodes crossed.
Tomorrow morning around 7:30AM I will be going to take my latest test, a Lymphangiogram.
A short time prior to the procedure I will be given Phentenol and Verset which will control pain, but I will be awake for the entire procedure.
The procedure itself will then be in two parts with Dr. Gillinov overseeing the entire process.
Part 1:
Dr. Geisenger of the Cleveland Clinic will inject a high contrast blue oil-based dye into the webbing between my toes...yeah, you read that right. Over the next 2-3 hours that dye will make its way through my lymph vessels in my legs and chest. My body will then be x-rayed to see where the dye and lymph is traveling. If everything appears to be "normal" with no leaks or drips from the main system, this is where the procedure will stop.
Duration: 2-3 hours
Part 2:
The second part of the algorythim would play out if the dye and lymph is shown to be "leaking" from my thymus, as has been posutlated. In this case, Dr. Sands will insert a needle and catheter somewhere into my torso, pass through my liver and into my thymus. Dr. Sands will then endeavor to reach the leak and glue/caulk/plug it. Once the leak has been remedied, the Dr. will back his way out.
Duration: 2 hours
So by the time most of you read this I will likely be done with part one and either getting ready to get back to my room or begining part two.
Needless to say, with my most recent experience this past week I am a little anxious about the entire procedure. However, I trust Dr. Gillinov.
There is no question that Wednesday will be tough physically on me and challenging both for my family and I mentally but I promise you all this...Each time I feel nervous, tired, discomfort or doubt, I will think of the posts, calls and emails you have sent my way over the last several weeks. If this is another required hurdle to get back home to friends and family of the caliber that I have, then I say:
BRING IT ON! What's a little needle and dye between your toes!? Catheter through my liver? Is that the best you can do? Another needle through my chest? Whatever!!! I may wince and I may cringe, but I will not stop here and this is excatly why I know that this too shall pass. Because although I cannot control everything that I will experience, I can control how I react to it. And in one form or another I will be here tomorrow night to share with you how things went.
Keep your lymph nodes crossed for me.
~Joe
11 days post-op
A short time prior to the procedure I will be given Phentenol and Verset which will control pain, but I will be awake for the entire procedure.
The procedure itself will then be in two parts with Dr. Gillinov overseeing the entire process.
Part 1:
Dr. Geisenger of the Cleveland Clinic will inject a high contrast blue oil-based dye into the webbing between my toes...yeah, you read that right. Over the next 2-3 hours that dye will make its way through my lymph vessels in my legs and chest. My body will then be x-rayed to see where the dye and lymph is traveling. If everything appears to be "normal" with no leaks or drips from the main system, this is where the procedure will stop.
Duration: 2-3 hours
Part 2:
The second part of the algorythim would play out if the dye and lymph is shown to be "leaking" from my thymus, as has been posutlated. In this case, Dr. Sands will insert a needle and catheter somewhere into my torso, pass through my liver and into my thymus. Dr. Sands will then endeavor to reach the leak and glue/caulk/plug it. Once the leak has been remedied, the Dr. will back his way out.
Duration: 2 hours
So by the time most of you read this I will likely be done with part one and either getting ready to get back to my room or begining part two.
Needless to say, with my most recent experience this past week I am a little anxious about the entire procedure. However, I trust Dr. Gillinov.
There is no question that Wednesday will be tough physically on me and challenging both for my family and I mentally but I promise you all this...Each time I feel nervous, tired, discomfort or doubt, I will think of the posts, calls and emails you have sent my way over the last several weeks. If this is another required hurdle to get back home to friends and family of the caliber that I have, then I say:
BRING IT ON! What's a little needle and dye between your toes!? Catheter through my liver? Is that the best you can do? Another needle through my chest? Whatever!!! I may wince and I may cringe, but I will not stop here and this is excatly why I know that this too shall pass. Because although I cannot control everything that I will experience, I can control how I react to it. And in one form or another I will be here tomorrow night to share with you how things went.
Keep your lymph nodes crossed for me.
~Joe
11 days post-op
Play Along from Home.
Good Morning, Everyone.
I've received my dietary options. In addition to the below I will need to take 1/2 an ounce of Medium Chain Trigliceride (MCT) oil per meal. Apparently it is very difficult to come by. The street value of this stuff is $30/ounce. So here are all of my options for all meals:
I've received my dietary options. In addition to the below I will need to take 1/2 an ounce of Medium Chain Trigliceride (MCT) oil per meal. Apparently it is very difficult to come by. The street value of this stuff is $30/ounce. So here are all of my options for all meals:
- All Fruits and Vegetables
- Skim Milk
- Fish (grilled or broiled)
- Baked Potato
- Rice
- Fat Free Sour Cream
- Fat Free Cottage Cheese
- Fat Free Salad Dressing
And that's it. I suggested Atkins as an alternative and after a great deal of consideration they decided against it.
So, please play along from home. Give me your creative suggestions of how to combine the above and I may just have it as my next meal.
~Joe
10 days post-op
PS. Damn it. I should have had that burger when I had the chance.
Monday, October 17, 2005
Maybe I’ll wake-up to discover I was abducted by aliens.
The Bill Cosby show made its debut and Madonna’s, “Like a Virgin” was blaring on the radio. Leg warmers were being worn even when it wasn’t chilly and guys’ collars were turned up as the term “yuppies” made it into everyday lexicon.
The year was 1984. I was 13 and hadn’t even found out yet that I had a heart murmur. My hair was probably feathered (I had enough then to do that) and I likely had more than one pair of corduroy OP shorts.
1984 was also the most recent documented medical case that is similar to mine…and that occurred in Australia.
I’m going to run the numbers when I have the patience (pun not intended but noted), but suffice to say it sure isn’t common. Fluid around the heart after Mitral Valve repair is, in itself, a 1 in 1000 occurrence. Fluid containing triglycerides just doesn’t happen. Well, maybe once every twenty years. I guess I should buy a lottery ticket with those kind of numbers, huh?
So the surgeons, cardiologist and other specialists have been conferring with one another on the game plan and here is what comes next.
Starting immediately: No Salt, No Fat diet….Yummm! No fat, no salt hospital food! Whoo hoo!!!
Tuesday: Savor saltless Salteens. Read next couple of chapters in “Devil’s Teeth”
Wednesday: Undergo new test. Only three facilities in the US can perform this test. They will inject a dye into my lymph system via my foot and then watch with a ‘special’ monitor that allows them to track the dye. If the integrity of my lymph system has been compromised they will be able to see both where as well as how quickly it is leaking.
Thursday: If the test shows the leak to be in my thalamus as has been postulated, Dr. Gillinov will operate on me again through the same incision and try to find and repair the leak. At the same time they will drain the fluid again.
Friday: Recovering, Echocardiogram
Saturday: Recovering
Sunday: Recovering, Echocardiogram…..
I thought this was going to be a sprint…feels more like wind sprints.
I’m tired. Really tired, more emotionally than physically at this point but my support system is strong. Allison, Max, my Mom, Dad and Father-in-law, Norm are all here and they have been my beacon in the storm.
We’re going to make it and we’ll be stronger because of it.
~Joe
10 days post-op
PS. Maybe I’ll wake-up and just realize that I was abducted by aliens. http://www.alienscalpel.com
PPS. I’ve moved rooms again so my new number is 216-444-1348.
The year was 1984. I was 13 and hadn’t even found out yet that I had a heart murmur. My hair was probably feathered (I had enough then to do that) and I likely had more than one pair of corduroy OP shorts.
1984 was also the most recent documented medical case that is similar to mine…and that occurred in Australia.
I’m going to run the numbers when I have the patience (pun not intended but noted), but suffice to say it sure isn’t common. Fluid around the heart after Mitral Valve repair is, in itself, a 1 in 1000 occurrence. Fluid containing triglycerides just doesn’t happen. Well, maybe once every twenty years. I guess I should buy a lottery ticket with those kind of numbers, huh?
So the surgeons, cardiologist and other specialists have been conferring with one another on the game plan and here is what comes next.
Starting immediately: No Salt, No Fat diet….Yummm! No fat, no salt hospital food! Whoo hoo!!!
Tuesday: Savor saltless Salteens. Read next couple of chapters in “Devil’s Teeth”
Wednesday: Undergo new test. Only three facilities in the US can perform this test. They will inject a dye into my lymph system via my foot and then watch with a ‘special’ monitor that allows them to track the dye. If the integrity of my lymph system has been compromised they will be able to see both where as well as how quickly it is leaking.
Thursday: If the test shows the leak to be in my thalamus as has been postulated, Dr. Gillinov will operate on me again through the same incision and try to find and repair the leak. At the same time they will drain the fluid again.
Friday: Recovering, Echocardiogram
Saturday: Recovering
Sunday: Recovering, Echocardiogram…..
I thought this was going to be a sprint…feels more like wind sprints.
I’m tired. Really tired, more emotionally than physically at this point but my support system is strong. Allison, Max, my Mom, Dad and Father-in-law, Norm are all here and they have been my beacon in the storm.
We’re going to make it and we’ll be stronger because of it.
~Joe
10 days post-op
PS. Maybe I’ll wake-up and just realize that I was abducted by aliens. http://www.alienscalpel.com
PPS. I’ve moved rooms again so my new number is 216-444-1348.
Sunday, October 16, 2005
Sunday evening - change of scenery
It's Sunday night and Joe is finally sleeping soundly in his new room. After a day of absolutely no doctor visits and very few nurse-related interactions they came by at 9pm to tell him he needed to move into another room (some explanation was given but it's just not worth going into it). So, my Dad and I (who, bless his heart, flew in from Denver today to be here to support all of us) hauled Joe's belongings down the hall to room #2. His new number is 216-444-1467 if you want to give him a buzz.
So as to not make your visit to the blog a complete disappointment, I'll fill you in on a few of today's highlights. Overall, it was a pretty uneventful day. We passed the time watching the Giant's lose and the Broncos win. My Dad tried to prepare Max that over time he would "bleed orange" in support of his Opa's favorite team. Max pooped shortly after in a nice shade of poppy -- Opa is taking that as a good sign. The highlight, however, was that Joe got a hallpass to go down to the main hospital lobby for an hour to spend time with Max for the first time in 6 days. Max could tell there was something familiar in the sound of this strange man's voice but underneath the blue baseball cap, behind the dark rimmed eyeglasses, and behind the Grizzly Adams beard...he didn't recognize his Daddy for a good 10 minutes. Once he did though, he was full of smiles and "coo's" which was the best medicine Joe could have been given today.
Another echo is scheduled for Monday morning so please continue to send Joe your good vibes. The goal is to see if the fluid has redeveloped, which we will hopefully know shortly after the procedure. If nothing has collected we are hoping to get walking papers out of this joint. If it has, we will talk about "next steps" with the team of surgeons and cardiologists.
We'll keep you all posted....
~Allison
9 days post-op
So as to not make your visit to the blog a complete disappointment, I'll fill you in on a few of today's highlights. Overall, it was a pretty uneventful day. We passed the time watching the Giant's lose and the Broncos win. My Dad tried to prepare Max that over time he would "bleed orange" in support of his Opa's favorite team. Max pooped shortly after in a nice shade of poppy -- Opa is taking that as a good sign. The highlight, however, was that Joe got a hallpass to go down to the main hospital lobby for an hour to spend time with Max for the first time in 6 days. Max could tell there was something familiar in the sound of this strange man's voice but underneath the blue baseball cap, behind the dark rimmed eyeglasses, and behind the Grizzly Adams beard...he didn't recognize his Daddy for a good 10 minutes. Once he did though, he was full of smiles and "coo's" which was the best medicine Joe could have been given today.
Another echo is scheduled for Monday morning so please continue to send Joe your good vibes. The goal is to see if the fluid has redeveloped, which we will hopefully know shortly after the procedure. If nothing has collected we are hoping to get walking papers out of this joint. If it has, we will talk about "next steps" with the team of surgeons and cardiologists.
We'll keep you all posted....
~Allison
9 days post-op
Friday, October 14, 2005
Readmitted to the hospital Friday evening...
Joe was unfortunately readmitted to the hospital this evening (details are on his audioblog, below). Luckily he's in his own room and not in ICU so that's the good news (he'd love to hear from you so give him a buzz at 216-444-1490) . Bad news is that he'll need to stick around for another 3-5 days for observation. Max and I are flying back early Saturday morning to be with him.
Thanks for continuing to keep us in your thoughts and prayers. It helps more than you'll ever know.
~Allison
Thanks for continuing to keep us in your thoughts and prayers. It helps more than you'll ever know.
~Allison
Take my breath away.
Wouldn’t you just know it? Just when our hero is sitting in the ICU and bellying-up to some cold mushroom, onion and sausage pizza…that’s when it happens. That’s always the point in our story when things go terribly awry. The cute girl gets killed, the CSI agent realizes he arrested the wrong person, the Cardiologist’s patient unexpectantly begins to crash. I was smug sitting upright in my ICU bed, G-52, basking in the fact that none of the nurses in their careers had ever seen a patient ordering take out. Sure, I had my humiliating hospital gown on but I was down to six electrodes, one IV line in my right arm and one drainage tube coming out of the bottom left rib cage.
There were three doctors there. Dr. Solow* from India, Dr. Evans* from Ireland and Dr. Rodriquez* from Chile. Each had their respective accents and set the stage nicely. They consulted, disagreed with one-another and debated with me, their patient, just looking for some reassurance and leadership. They finally agreed on all the variables and got started.
The procedure sucked. How’s that for eloquence? Even while taking one Xanax, IV Morphine, IV Demerol and two Percoset…I kid you not. I had all this and then I had three injections of Lanacaine at the site of the insertion applied at three different levels under my left pectoral between my ribs. The next 30 minutes were the most painful I had since they pulled out the chest tube a couple of days earlier. But when they were done I slowly started feeling better and marveled as I watched almost a liter of milky blood-like fluid removed from my chest. I’ll never look at penne with pink vodka sauce the same way again. The tube was draining into what looked like one of those old fashioned IV bottles that Dr. Frankenstein likely used. It was all glass, clear and shaped up to the top where the tube was inserted into a quarter size top with a soft membrane covering the top. The bottle had a vacuum affect drawing out the fluid first spraying and then eventually slowing to a drip and then stopping. When that was done, twenty minutes later, they removed the bottle and replaced it with the labyrinth of tubes, fat syringes and this grenade shaped plastic bulb that had all of the air squeezed out of it. The fluid now had a lot of places they could go and the doctors set-up various switching of the “train tracks” so that when more fluid built up, it would automatically come out into either the syringe or the grenade. I didn’t care, the pain was gone. They left in the catheter/garden hose that was meant to continue draining the fluid over night. This was it! They’ll pull the tube out tomorrow AM after a clean Echo and let me go on my merry way. This calls for pizza! My parents had come in from the waiting area and were relieved to see that I was in good spirits. They stuck around until the pizza got there and then went to get a bite for their selves around 8:15pm. They’d be back in an hour but had no idea what they would witness upon their return.
I ate three slices, which is more food than I’ve managed to eat all week. I had no appetite until now. I was watching baseball even though the Yanks made an early exit, and now, all the drugs were making little fire-flies dart around my field of vision. And so, the next 45 minutes were wonderful in the “I am truly over the worst of this now” find of way. Man, was I ever wrong.
[Deep breathing exercise to expand lungs. Thanks for your patience.]
It was quiet in this ICU tonight. When I first came down into recovery after the surgery it was chaotic. 11 patients, the max, with various connections to man-made contraptions meant to thwart Darwinism. Beeps, buzzers and tones constantly going off in a cacophony of chaos mixed with the wails of the infirmed and the disturbingly disinterested guffaws of the ICU staff made for the perfect healing environment. But tonight was different. There were only 6 patients which meant less beeps, wails and nurses guffawing. The nurses were actually empathetic, sweet and focused primarily on their patient. One nurse per patient. Tonight mine was Sarah, a 24 year old RN whose father had worked at the Cleveland Clinic as a nurse for 20 years, was looking after me. She was tall and thin and had a black bob with streaks of red in the front. She was shy but competent and you would think that this is the norm at all medical institutions, but what I came to realize during my week here in Cleveland is that there is incompetence at all levels, but I’ll save this for another entry. Let’s focus on the topic dujor. Scary shit.
When we last left our hero he was appearing in the DVD release of Fantasia, feeling happy and looking forward to going home soon. It was 9:00PM and he was lounging in his polka dot gown and plying the nurses with left over pizza. All was well. Through the main ICU doors came in Ben a tall kind RN who I had met and spoken with a few times both in the ICU as well as the heart center floor. I trusted and liked Ben. With him was Dr. Sidow*. Dr. Sidow was apparently the head of something. I never met her before, she didn’t introduce herself or directly address me. I might as well have been the coffee machine in the cafeteria. This happens a lot at “teaching” hospitals. In any given day I would be “observed” by 8 different cardiologists or surgeons who were at various levels in their career, some I would only see once and only once. And I have gathered one of the unwritten parts of this game is to agree with the “right” doctors and disagree with the “wrong” ones. Make your name but be careful how you do it. So Ben wanted to show Dr. Sidow how the procedure went. Ben folds back my blanket and she focuses on chest. She looks for barely a moment and declares to no-one in particular, “Why did they do it like this? They left it in the wrong position!” Now who am I to disagree with her? I’m not a medical professional and she IS a Dr. and to be fair since the three doctors left, no other fluid drained. So she turned a couple of the train switching valves and pulled on the syringe and in the process sucked extracted another 50CCs of fluid. She made a couple of more changes with more fluid slowly dripping into the grenade. And with this I started feeling some slight pressure in my sternum. “There we are, now that’s the way it should be, there needs to be constant suction.” And with that she and Ben walked away as quickly as they arrived. But the pressure was increasing unnervingly quickly. She and Ben were at the ICU exit about 20 yards away and I yelled, “Dr.! Ben!” But my breadth was be drained along with the fluid and I barely got out my cry for help. They turned and left at which point Sarah popped her head in. “How ya doing, sweetie?” “Um, I’m not sure. This doctor and Ben came over pulled some fluid out and now I feel like I have a tremendous amount of pressure on the center of my chest. “OK, I can give you more some more Demerol and then I will go find Ben.” Sarah quickly administered the additional drugs and they did nothing. Sarah was off to find Ben and the Dr. and this is precisely when my parents walked in.
I watched the blood drain from their faces as they walked up. There I was lying on the bed with a bunch of bloody tubes and contraptions coming out of my rib cage. I’m gasping for air and lying flat on my dripping with sweat. “What’s happening!” asked my mom.” (In between gasps) “T H E Y A R E L O O K I N G F O R T H E D O C T O R.” At this point Sarah gets back and says she found Ben but not the doctor. “Ben said it is normal to feel some pressure and than I can give you some Morphine.” And she does, dropping 25ccs of morphine into my IV on top of everything else floating around my system. (In between more exaggerated gasps “SARAH, I NEED A DOCTOR, IT’S GETTING WORSE!” “We need to get a doctor here right away!” My Mother says. “OK, I’m paging the staff cardiologist who is on duty” exclaims Sarah. At the Clinic they use a pain scale to determine how uncomfortable you are. You are asked constantly, “On a scale of 1-10, with 1 being the no pain and 10 being unbearable, how would you rate your pain?” In a mere 15 minutes I went from a 3 to a 9. When my parents left me an hour ago I was laughing and eating pizza. Now they are watching me splayed on my bed, writhing and unable to speak. My head is whipping from left to right and back again. Sweat is flying off my brow across the room and I feel as if I am being suspended in mid air with a Neanderthal spear driven right through the center of my chest and out my back. Imagine the movie Alien and just prior to the juvenile alien hatching from their human hosts. This is the only other way I can explain the pain. My parents are now looking left and right for help and Sarah reappears and announces that Dr. Moula is on her way down from Cardiology. And now some of the other nurses are gathering around but not doing anything in particular. I don’t think they knew what else to do. It was like slowing down to watch an in process car accident.
Dr. Moula burst on to the scene through the doors and she was pushing an Echocardiogram machine. Dr. Moula was a thick woman with some sort of Eastern European accent. After she quickly introduced herself she sat down on the bed next to me and focused on nothing but me and Sarah. “What do you feel?” She asked with focused determination. I managed to blurt out where the pain was. My father looked pale and had his forehead in his hand…which is the same thing I do when overly stressed. They were helpless, watching their second son and if they were like me at this point, they actually started to wonder whether or not I was going to make it. But at moments like this, you cannot allow those thoughts to embed themselves. You need to focus with the doctor. Dr. Moula worked the echo around me chest and told me everything she was going to do before she did it. She firmly requested tools from Sarah who remained remarkably calm. “There’s your mitral valve, it looks good. Your left and right atriums look ok. Stay focused, Mr. Salvati, I’m going to take care of you.” And, I believed her. “Ahh, I see! The catheter, it is rubbing against two sections of the heart. This syringe shouldn’t have been left on drain…otherwise this happens. Sarah, page the Cardiologist who performed this, I want to get permission to pull this out. It doesn’t need to be in there!” “P U L L I T O U T!!!” I yelled. “OK, I’m going to pull it out a little to see if that reduces the pain.” And she did, and it didn’t. “Sarah, get me a double saline syringe wash!” She attached the double syringe and told me she is adding fluid to relieve some of the irritation. At this point the pain shot up throughout my right shoulder and arm. “OH, MY SHOULDER!” “That’s it,” she said firmly, I am not waiting for permission! OK, Mr. Salvati, I am going to pull this out and you are going to feel better.” Dr. Moula then started pulling out the tube which seemed to go on forever. Earlier, the cardiologist who was performing the procedure told me that the heart is about 3.5 inches from where we are entering. I can handle that, I thought to myself. Well, Dr.Moula was still pulling like a clown pulling out tied scarves from magic hat. In total the catheter was more than 3 FEET inside my chest. Why? I don’t know.” “There, how do you feel?” “I don’t know.” I huffed. And then I heaved and tried to gasp and then it happened. The pressure and pain started to slowly ease. “I think it is getting better.” I said. “You’re going to be OK. They shouldn’t have left this in. There isn’t any more fluid to drain and when that happens the heart walls start rubbing against each other with the catheter in the middle. The heart gets irritated and it starts looking for more fluid to drain.” And now, just five minutes after the 3 feet of garden hose is removed from my chest, I’m feeling better again. “I’m a 3 now.” “OK, Mr. Salvati, if you need anything else just page me, OK?” “Will I have to do this again?” “No, you shouldn’t have to. Just get some rest and you’ll be fine in the morning.” And with that Dr. Moula left with little fanfare. I thanked her profusely as she left and after my parents were sure I was better, they too left for the hotel for a relieved but likely broken sleep.
I sat on the edge of my bed leaning over the tray table, still sweating but breathing better and feeling less pain. For a few minutes I sat and didn’t move, just happy to be there.
And now, it is the following evening and I am sitting in my parent’s hotel room. I made it out. I have another echocardiogram tomorrow afternoon, and if we get through that we are on our way. I have no electrodes, needles or tubes in me right now, and I want to keep it that way. The appointment is scheduled for 3:40 Friday afternoon. Please send good thoughts then if you remember cause it’s time to go home.
* These names have been changed.
~Joe
8 days post-op
There were three doctors there. Dr. Solow* from India, Dr. Evans* from Ireland and Dr. Rodriquez* from Chile. Each had their respective accents and set the stage nicely. They consulted, disagreed with one-another and debated with me, their patient, just looking for some reassurance and leadership. They finally agreed on all the variables and got started.
The procedure sucked. How’s that for eloquence? Even while taking one Xanax, IV Morphine, IV Demerol and two Percoset…I kid you not. I had all this and then I had three injections of Lanacaine at the site of the insertion applied at three different levels under my left pectoral between my ribs. The next 30 minutes were the most painful I had since they pulled out the chest tube a couple of days earlier. But when they were done I slowly started feeling better and marveled as I watched almost a liter of milky blood-like fluid removed from my chest. I’ll never look at penne with pink vodka sauce the same way again. The tube was draining into what looked like one of those old fashioned IV bottles that Dr. Frankenstein likely used. It was all glass, clear and shaped up to the top where the tube was inserted into a quarter size top with a soft membrane covering the top. The bottle had a vacuum affect drawing out the fluid first spraying and then eventually slowing to a drip and then stopping. When that was done, twenty minutes later, they removed the bottle and replaced it with the labyrinth of tubes, fat syringes and this grenade shaped plastic bulb that had all of the air squeezed out of it. The fluid now had a lot of places they could go and the doctors set-up various switching of the “train tracks” so that when more fluid built up, it would automatically come out into either the syringe or the grenade. I didn’t care, the pain was gone. They left in the catheter/garden hose that was meant to continue draining the fluid over night. This was it! They’ll pull the tube out tomorrow AM after a clean Echo and let me go on my merry way. This calls for pizza! My parents had come in from the waiting area and were relieved to see that I was in good spirits. They stuck around until the pizza got there and then went to get a bite for their selves around 8:15pm. They’d be back in an hour but had no idea what they would witness upon their return.
I ate three slices, which is more food than I’ve managed to eat all week. I had no appetite until now. I was watching baseball even though the Yanks made an early exit, and now, all the drugs were making little fire-flies dart around my field of vision. And so, the next 45 minutes were wonderful in the “I am truly over the worst of this now” find of way. Man, was I ever wrong.
[Deep breathing exercise to expand lungs. Thanks for your patience.]
It was quiet in this ICU tonight. When I first came down into recovery after the surgery it was chaotic. 11 patients, the max, with various connections to man-made contraptions meant to thwart Darwinism. Beeps, buzzers and tones constantly going off in a cacophony of chaos mixed with the wails of the infirmed and the disturbingly disinterested guffaws of the ICU staff made for the perfect healing environment. But tonight was different. There were only 6 patients which meant less beeps, wails and nurses guffawing. The nurses were actually empathetic, sweet and focused primarily on their patient. One nurse per patient. Tonight mine was Sarah, a 24 year old RN whose father had worked at the Cleveland Clinic as a nurse for 20 years, was looking after me. She was tall and thin and had a black bob with streaks of red in the front. She was shy but competent and you would think that this is the norm at all medical institutions, but what I came to realize during my week here in Cleveland is that there is incompetence at all levels, but I’ll save this for another entry. Let’s focus on the topic dujor. Scary shit.
When we last left our hero he was appearing in the DVD release of Fantasia, feeling happy and looking forward to going home soon. It was 9:00PM and he was lounging in his polka dot gown and plying the nurses with left over pizza. All was well. Through the main ICU doors came in Ben a tall kind RN who I had met and spoken with a few times both in the ICU as well as the heart center floor. I trusted and liked Ben. With him was Dr. Sidow*. Dr. Sidow was apparently the head of something. I never met her before, she didn’t introduce herself or directly address me. I might as well have been the coffee machine in the cafeteria. This happens a lot at “teaching” hospitals. In any given day I would be “observed” by 8 different cardiologists or surgeons who were at various levels in their career, some I would only see once and only once. And I have gathered one of the unwritten parts of this game is to agree with the “right” doctors and disagree with the “wrong” ones. Make your name but be careful how you do it. So Ben wanted to show Dr. Sidow how the procedure went. Ben folds back my blanket and she focuses on chest. She looks for barely a moment and declares to no-one in particular, “Why did they do it like this? They left it in the wrong position!” Now who am I to disagree with her? I’m not a medical professional and she IS a Dr. and to be fair since the three doctors left, no other fluid drained. So she turned a couple of the train switching valves and pulled on the syringe and in the process sucked extracted another 50CCs of fluid. She made a couple of more changes with more fluid slowly dripping into the grenade. And with this I started feeling some slight pressure in my sternum. “There we are, now that’s the way it should be, there needs to be constant suction.” And with that she and Ben walked away as quickly as they arrived. But the pressure was increasing unnervingly quickly. She and Ben were at the ICU exit about 20 yards away and I yelled, “Dr.! Ben!” But my breadth was be drained along with the fluid and I barely got out my cry for help. They turned and left at which point Sarah popped her head in. “How ya doing, sweetie?” “Um, I’m not sure. This doctor and Ben came over pulled some fluid out and now I feel like I have a tremendous amount of pressure on the center of my chest. “OK, I can give you more some more Demerol and then I will go find Ben.” Sarah quickly administered the additional drugs and they did nothing. Sarah was off to find Ben and the Dr. and this is precisely when my parents walked in.
I watched the blood drain from their faces as they walked up. There I was lying on the bed with a bunch of bloody tubes and contraptions coming out of my rib cage. I’m gasping for air and lying flat on my dripping with sweat. “What’s happening!” asked my mom.” (In between gasps) “T H E Y A R E L O O K I N G F O R T H E D O C T O R.” At this point Sarah gets back and says she found Ben but not the doctor. “Ben said it is normal to feel some pressure and than I can give you some Morphine.” And she does, dropping 25ccs of morphine into my IV on top of everything else floating around my system. (In between more exaggerated gasps “SARAH, I NEED A DOCTOR, IT’S GETTING WORSE!” “We need to get a doctor here right away!” My Mother says. “OK, I’m paging the staff cardiologist who is on duty” exclaims Sarah. At the Clinic they use a pain scale to determine how uncomfortable you are. You are asked constantly, “On a scale of 1-10, with 1 being the no pain and 10 being unbearable, how would you rate your pain?” In a mere 15 minutes I went from a 3 to a 9. When my parents left me an hour ago I was laughing and eating pizza. Now they are watching me splayed on my bed, writhing and unable to speak. My head is whipping from left to right and back again. Sweat is flying off my brow across the room and I feel as if I am being suspended in mid air with a Neanderthal spear driven right through the center of my chest and out my back. Imagine the movie Alien and just prior to the juvenile alien hatching from their human hosts. This is the only other way I can explain the pain. My parents are now looking left and right for help and Sarah reappears and announces that Dr. Moula is on her way down from Cardiology. And now some of the other nurses are gathering around but not doing anything in particular. I don’t think they knew what else to do. It was like slowing down to watch an in process car accident.
Dr. Moula burst on to the scene through the doors and she was pushing an Echocardiogram machine. Dr. Moula was a thick woman with some sort of Eastern European accent. After she quickly introduced herself she sat down on the bed next to me and focused on nothing but me and Sarah. “What do you feel?” She asked with focused determination. I managed to blurt out where the pain was. My father looked pale and had his forehead in his hand…which is the same thing I do when overly stressed. They were helpless, watching their second son and if they were like me at this point, they actually started to wonder whether or not I was going to make it. But at moments like this, you cannot allow those thoughts to embed themselves. You need to focus with the doctor. Dr. Moula worked the echo around me chest and told me everything she was going to do before she did it. She firmly requested tools from Sarah who remained remarkably calm. “There’s your mitral valve, it looks good. Your left and right atriums look ok. Stay focused, Mr. Salvati, I’m going to take care of you.” And, I believed her. “Ahh, I see! The catheter, it is rubbing against two sections of the heart. This syringe shouldn’t have been left on drain…otherwise this happens. Sarah, page the Cardiologist who performed this, I want to get permission to pull this out. It doesn’t need to be in there!” “P U L L I T O U T!!!” I yelled. “OK, I’m going to pull it out a little to see if that reduces the pain.” And she did, and it didn’t. “Sarah, get me a double saline syringe wash!” She attached the double syringe and told me she is adding fluid to relieve some of the irritation. At this point the pain shot up throughout my right shoulder and arm. “OH, MY SHOULDER!” “That’s it,” she said firmly, I am not waiting for permission! OK, Mr. Salvati, I am going to pull this out and you are going to feel better.” Dr. Moula then started pulling out the tube which seemed to go on forever. Earlier, the cardiologist who was performing the procedure told me that the heart is about 3.5 inches from where we are entering. I can handle that, I thought to myself. Well, Dr.Moula was still pulling like a clown pulling out tied scarves from magic hat. In total the catheter was more than 3 FEET inside my chest. Why? I don’t know.” “There, how do you feel?” “I don’t know.” I huffed. And then I heaved and tried to gasp and then it happened. The pressure and pain started to slowly ease. “I think it is getting better.” I said. “You’re going to be OK. They shouldn’t have left this in. There isn’t any more fluid to drain and when that happens the heart walls start rubbing against each other with the catheter in the middle. The heart gets irritated and it starts looking for more fluid to drain.” And now, just five minutes after the 3 feet of garden hose is removed from my chest, I’m feeling better again. “I’m a 3 now.” “OK, Mr. Salvati, if you need anything else just page me, OK?” “Will I have to do this again?” “No, you shouldn’t have to. Just get some rest and you’ll be fine in the morning.” And with that Dr. Moula left with little fanfare. I thanked her profusely as she left and after my parents were sure I was better, they too left for the hotel for a relieved but likely broken sleep.
I sat on the edge of my bed leaning over the tray table, still sweating but breathing better and feeling less pain. For a few minutes I sat and didn’t move, just happy to be there.
And now, it is the following evening and I am sitting in my parent’s hotel room. I made it out. I have another echocardiogram tomorrow afternoon, and if we get through that we are on our way. I have no electrodes, needles or tubes in me right now, and I want to keep it that way. The appointment is scheduled for 3:40 Friday afternoon. Please send good thoughts then if you remember cause it’s time to go home.
* These names have been changed.
~Joe
8 days post-op
Wednesday, October 12, 2005
Wednesday update 7:30pm
Hello once again.
I just talked to Joe's Mom and wanted to give everyone the update:
- The doctors drained the fluid this afternoon and there was enough of it to warrant continuing to do so overnight.
+ He had been having a difficult time breathing which has gotten better since the procedure so that's great news.
- He remains in the ICU and the doctors will reassess the situation tomorrow to give him a more solid understanding of how long he'll stay.
+ He's just ordered a large pizza and garlic cheese bread to his ICU bed so his appetite is finally coming back!
Although I can't call him, I did acquire the fax number for his ICU unit (216-445-5720) and am keeping him updated with all of your blog comments. Keep 'em coming!
Max and I are doing fine...trying to stay dry in this terrible weather we're having...and anxiously awaiting Daddy's return.
More to come tomorrow~
Allison
I just talked to Joe's Mom and wanted to give everyone the update:
- The doctors drained the fluid this afternoon and there was enough of it to warrant continuing to do so overnight.
+ He had been having a difficult time breathing which has gotten better since the procedure so that's great news.
- He remains in the ICU and the doctors will reassess the situation tomorrow to give him a more solid understanding of how long he'll stay.
+ He's just ordered a large pizza and garlic cheese bread to his ICU bed so his appetite is finally coming back!
Although I can't call him, I did acquire the fax number for his ICU unit (216-445-5720) and am keeping him updated with all of your blog comments. Keep 'em coming!
Max and I are doing fine...trying to stay dry in this terrible weather we're having...and anxiously awaiting Daddy's return.
More to come tomorrow~
Allison
Speed bump on the road to recovery
It’s Allison again…Joe tried to make an audio blog last night but for some reason it didn’t work. He wanted to personally fill you in on the latest details – which we hate to say -- are a bit of a speed bump on the road to recovery.
The last step in Joe’s preparation to leave the Clinic was a final echocardiogram (an ultrasound of his heart) to clear him to come home. They performed the “echo” yesterday afternoon and results showed swelling around the heart. They mentioned that this happens, although rarely, with their younger patients who tend to be in very good physical health. Go figure.
The cardiologist put him on steroids last night in an attempt to lessen the fluid accumulation without another, more invasive, procedure. We found out at 10:30am this morning that the steroids did not work and the fluid had actually increased overnight. Therefore, Joe will be readmitted to the ICU this afternoon so a team of cardiologists can insert a needle near his heart to drain this fluid.
The best case scenario: After 30 minutes, the fluid is completely drained and they can remove the tube. He would remain in ICU until tomorrow morning at which time he could go and spend a restful day and night in the hotel with his parents. Friday morning they would have him return for one final “echo” to confirm the fluid had not returned before being given his walking papers.
The worst case scenario: After 30 minutes, the fluid continues to drain and they are forced to leave the catheter in for at least 24 hours. Since this would take us to Thursday afternoon, they would keep him in ICU until Friday for observation at which time they would reassess the situation. They are (finally) setting his expectations that he could feasibly be in the hospital through the weekend in the event the fluid continues to develop.
So, the good news is that they detected the fluid now and not in another two weeks after he’s returned home. I’m sure the ramifications of this would be much worse and we are thankful he is still in the clinic to be taken care of.
The bad news is that the “echo” was administered yesterday just one hour after Max and I left Cleveland heading for home. We now must do what we can to support him from a thousand miles away which is really a bummer.
Joe remains strong, although disappointed, and continues to pull strength from all of the support from each of you. As you know, he will go back to not having a phone in ICU so the second best thing is for you to “comment” here on the blog and I will be sure he gets to read each and every one. I ask that you continue to send good, strong energy in Joe’s direction over the next few days and pray for a quick and painless procedure this afternoon.
Stay tuned…
Allison
5 days post-op
The last step in Joe’s preparation to leave the Clinic was a final echocardiogram (an ultrasound of his heart) to clear him to come home. They performed the “echo” yesterday afternoon and results showed swelling around the heart. They mentioned that this happens, although rarely, with their younger patients who tend to be in very good physical health. Go figure.
The cardiologist put him on steroids last night in an attempt to lessen the fluid accumulation without another, more invasive, procedure. We found out at 10:30am this morning that the steroids did not work and the fluid had actually increased overnight. Therefore, Joe will be readmitted to the ICU this afternoon so a team of cardiologists can insert a needle near his heart to drain this fluid.
The best case scenario: After 30 minutes, the fluid is completely drained and they can remove the tube. He would remain in ICU until tomorrow morning at which time he could go and spend a restful day and night in the hotel with his parents. Friday morning they would have him return for one final “echo” to confirm the fluid had not returned before being given his walking papers.
The worst case scenario: After 30 minutes, the fluid continues to drain and they are forced to leave the catheter in for at least 24 hours. Since this would take us to Thursday afternoon, they would keep him in ICU until Friday for observation at which time they would reassess the situation. They are (finally) setting his expectations that he could feasibly be in the hospital through the weekend in the event the fluid continues to develop.
So, the good news is that they detected the fluid now and not in another two weeks after he’s returned home. I’m sure the ramifications of this would be much worse and we are thankful he is still in the clinic to be taken care of.
The bad news is that the “echo” was administered yesterday just one hour after Max and I left Cleveland heading for home. We now must do what we can to support him from a thousand miles away which is really a bummer.
Joe remains strong, although disappointed, and continues to pull strength from all of the support from each of you. As you know, he will go back to not having a phone in ICU so the second best thing is for you to “comment” here on the blog and I will be sure he gets to read each and every one. I ask that you continue to send good, strong energy in Joe’s direction over the next few days and pray for a quick and painless procedure this afternoon.
Stay tuned…
Allison
5 days post-op
Tuesday, October 11, 2005
Sunday, October 09, 2005
Saturday, October 08, 2005
Please...just set our expectations!
It's Sunday night at 10:13pm and I've just returned from visiting Joe for the 3rd and final time today. He was very much looking forward to entering today's blog and even has the mental frame of mind and voice to do so. Unfortunately, he still finds himself in the ICU which keeps him from having access to his laptop, cellphone and even his iPod. This is not because he isn't continuing to do great...quite the contrary, actually. It is merely because of a series of mistakes and misunderstandings that occurred after being led to believe he would be moved upstairs to the regular ward by early afternoon today.
I don't want to dwell or even give the impression that we aren't completely impressed with the clinic -- because we are. But we were told yesterday immediately following the surgery that he was doing so well he was considered a "fast tracker" -- someone who would be out of ICU sooner than the average patient. Of course, we all got excited and Joe was able to start looking forward to seeing Max.
At that point, Joe was assigned to a specific room "upstairs" that had a patient scheduled to be discharged today. Well, as it turns out, he wasn't released and instead of Joe being assigned to another room he is forced to wait until this gentleman is well enough to go home before he can leave ICU. This means that even though Joe is medically approved to get the catheter removed from his neck, the IV removed from his left arm and oh-so-ready to fall asleep in a place that does not echo with the sounds of heart monitoring machines beeping, the incessant alarms of blood pressure monitors sounding and his next door neighbor yelling at the top of her lungs during a sponge bath, that he must stay put until this guy is sent home.
Come 5:00pm, it was clear that Plan A was not underway and boy was Joe livid. It takes a lot to get him upset but this series of events meant that it would be another 18 hours before he could see his baby boy again -- and this was just not acceptable. And to think that, even though we would have all been disappointed, all of this could have been tolerable if they would have been able to set our expectations a bit better.
Needless to say, his Mom and I spoke privately with the head nurse who agreed to at least take out the IV and promised to reschedule the 3am X-ray for a more reasonable hour so he could get an uninterrupted night's sleep. At this point, we'll take what we can get. Luckily, Max was smart enough to make his Daddy a frame full of photos of his favorite pics of the two of them so Joe can gaze at these images as he presses the button on his hand-held morphine dispenser and slides into a drug-induced sleep.
But I digress.
The important thing here is that Joe is doing great. He sat in a chair today for a while (see the photo I sneakily took while the nurses weren't looking), was able to stomach some ice chips and cranberry juice and the biggest hurdle of all -- had a 3/4" thick tube removed from his chest that was 6" deep and causing him a great deal of discomfort. Around here, these are incredible milestones that we celebrated throughout the day.
So, we head into day #3 of our post-op journey and Joe promises to be back with you tomorrow to explain in his own words how his recovery is going. I fear my writing pales in comparison to his -- but I hope it gives you some insight to our day.
Thanks to all of you who have been trying to reach him at the hospital. He doesn't have a phone in ICU so try again Sunday and by then he will be upstairs and more than ready to take calls. But if he's asleep then you'll have to talk to me. Just setting your expectations.
~ Allison
Friday, October 07, 2005
It's OVER!
Hi everyone...it's Allison. We posted an audioblog with the update of today's successful surgery so click on the link below to hear all of the details!!!!!!!!!!!!!!
Thursday, October 06, 2005
Wouldn't it be ironic?
Wouldn’t it be ironic if the day I met the surgeon who was to operate on me that I broke his hand with an overzealous handshake? I’m no giant and don’t have a vice grip, but I would say I have a firm handshake. At 8:00 this morning I met Dr. Marc A. Gillinov (pictured above), my surgeon who will be leading tomorrow’s procedure. I stood up to shake his hand when he came into the room and I realized that I may have squeezed a little hard. Dr. Gillinov didn’t flinch or anything like that, but he gripped lightly…as he should. Right? I mean, his hands are his career and in this case, my well being. Perhaps he should be wearing Kevlar mittens when not operating. Shouldn’t that be a public service requirement considering his fantastic reputation? I’ll put my suggestion in the “How’s My Operating?” box outside the OR when they wheel me out. Dr. Gillinov allayed any remaining concerns I might have had coming into today.This may sound completely irrelevant but regardless of my medical situation if I were to meet Dr. Gillinov (let’s call him Marc here) and The Hammer (Dr. Hammer, the Cardiologist/Bouncer) I think I’d like to have a beer with them. They’re nice, smart, funny guys. While being a nice person doesn’t make you a better surgeon, shouldn’t you have some sort of personal connection with the person who is going to operate on your heart? You are paying to have someone fix you but in the process it will cause you and your family physical and mental pain. I have a tattoo on my ankle. I got it six years ago while in San Francisco at the same tattoo parlor that Janis Joplin went to, but that too is irrelevant. The relevant point is that I paid someone (Rick) to leave an indelible mark on me and in the process inflict a great deal of pain over the course of an hour and a half…It was important that I got to know Rick at least a little so I went back a couple of times and chatted with him a fair amount more than most of his other clients. This too will leave an indelible mark both mentally and physically on me and so Marc, you and Rick are now in the same place in my brain. You’re both artists. Both have well trained eyes and hands and both are leaving me different than when I first met you. There are really only two differences; 1. Marc doesn’t have spider-web tattoos behind each of his ears. 2. Rick is slightly less educated.
So tomorrow AM is the big show, Everyone. Here is the rough schedule. A detailed MS Project will follow shortly.
4:15AM: Wake-up – wash with antibacterial soap provided, gargle with Listerine, dress
5:15AM: Check in
6:15AM: Pre-op preparation (2 hours of chest shaving)
7:15AM: Anesthesiologist gives me “something to take the edge off”
7:45AM: IV’s and ECG sensors placed on my body
8:00AM: General anesthesia administered through my IV
8:01AM: Vision will blur
8:02AM: Hearing will fade
8:05AM: Breathing tube inserted into my throat
8:15AM: Scalpel to skin
9:15AM: Heart stopped and bypass machine initiated
9:30AM: Mitral Valve accessed and repaired
11:30AM: Sew-up
12:00PM: Hearing will return slowly
12:15PM: Vision will return slowly
2:00PM: Breathing tube removed
2:15PM: Family reunion
3:30PM: Blog update
8:05PM: Tune to ESPN to watch Yankees slap around Anaheim
So that’s it! One more thank you to every one of the many friends and family who have reached out with tremendous support, prayers, calls and notes. I am truly blessed.
~Joe
0 days left
By your side, always.
I want to share with Joe, and everyone reading his blog, how completely in love I am with this man. I could not be more proud of how strong and optimistic he has been through these past few months in anticipation of his surgery. Finding out he needed the operation, while I was in the 7th month of my pregnancy, was tough timing to say the least. He was able to focus on doing his research, picking the surgery date and then essentially putting the procedure aside as he concentrated on taking care of me and the preparing for the impending birth of our beautiful son.
All of you who know Joe realize how lucky you are to have him in your life. He is the smartest, funniest and most loyal friend anyone could have. I, however, have the special treat of being his wife and truly consider myself the luckiest girl in the world. There are a million things awaiting he and I…the least of which is watching Max grow into a little person…and I cannot wait to reach each new chapter with him by my side.
Thanks to all of you for your amazing support. It’s been such a rush to come back to our hotel each evening to read your comments and emails full of heartfelt encouragement and humorous cheer. Joe has been hearing from people he hasn’t been in touch with for over a decade -- proving the special network of people we are a part of as well as the power of the Web.
Joe, I will be the last person you see before your surgery and the first person by your side when you wake up. Tomorrow at this time we will have jumped the hurdle that has been facing us and we will have the immense pleasure of looking back and knowing we beat it – together. I love you more than you will ever know.
~ Al
All of you who know Joe realize how lucky you are to have him in your life. He is the smartest, funniest and most loyal friend anyone could have. I, however, have the special treat of being his wife and truly consider myself the luckiest girl in the world. There are a million things awaiting he and I…the least of which is watching Max grow into a little person…and I cannot wait to reach each new chapter with him by my side.
Thanks to all of you for your amazing support. It’s been such a rush to come back to our hotel each evening to read your comments and emails full of heartfelt encouragement and humorous cheer. Joe has been hearing from people he hasn’t been in touch with for over a decade -- proving the special network of people we are a part of as well as the power of the Web.
Joe, I will be the last person you see before your surgery and the first person by your side when you wake up. Tomorrow at this time we will have jumped the hurdle that has been facing us and we will have the immense pleasure of looking back and knowing we beat it – together. I love you more than you will ever know.
~ Al
Wednesday, October 05, 2005
It is all in a smile
The wizards had good things to say.
Today I met no less than 17 different specialists and technicians employed by the Cleveland Clinic. My second to last appointment was with Dr. Hammer, my cardiologist. Dr. Hammer, who was a bartender and bouncer at a bar downtown during his college days gave me the green light to have the procedure through a minimally invasive technique which is a little more complicated and lengthy but has the benefit of a lot less trauma. Rib-splitters need not apply. (Hammer, the bouncer…are you serious?)
Take your thumb and place it at the base of your throat where your collarbones come together. Go on, this is an “interactive” exercise. The incisions will begin where your thumb is resting and move down the center of your chest approximately 4 inches which is about 4 ribs down from the top. At this spot, the incision will go another inch to the left portion of your chest in the form of a “J”. One inch of this rib will be broken/cut and removed. This is the space that Dr. Gillinov, your surgeon will be using to access your heart. The other members of the surgical team (about12 professionals) will then have a drink, smoke a Pall Mall and laugh at that birthmark you have that is eerily similar to Dick Cheney’s profile. Then, the team will stop your heart and circulate your blood through a machine that will keep it oxygenated. Did I mention the anesthesia? Yeah, you’ll have some of that. Dr. Gillinov will then do his magic, slicing into your heart’s outer wall until he reaches the Mitral Valve which connects your left atrium to your left ventricle. His repair technique will depend upon what he discovers when he is in there….but you won’t know a thing until you wake up groggily trying to remember where/who you are and why you have 7 tubes sticking out of various parts of your body. You’re in the ICU which is the last place someone who needs rest should be. But it is over, and just beginning at the same time.
The good news? You made it.
The really good news? Max started smiling today.
~Joe
1 days left
Tuesday, October 04, 2005
Ben
Hello, Everyone.
We arrived in Cleveland this afternoon around 3:30. I knew Max would be a jet-setter, but I didn’t expect his first trip to be at 6 weeks, let alone to Cleveland. Our driver took us from the airport on the west side of Cleveland to the Clinic which is on the east side of the city. Ben, our driver who was about 65 years old and wore very comfortable shoes paired with a very uncomfortable suit said he moved here from Massachusetts 35 years ago. He pointed out the “sites” along the way. He showed us the theater where Tom Hanks got his start and then pointed out Jacobs’s field. With this I gave him my condolences on the Indians collapse. He was appreciative and then he said he was now rooting for the Red Sox. It was at this point that I realized that I need to conceal my fervor for the Yankees until AFTER my surgery. You never know who is rooting for whom.
Ben asked who wasn’t well. Allison and I looked at each other a little confused and then we realized that our hotel was on the Cleveland Clinic campus. Allison shared with Ben the upcoming events we had planned. Ben was quiet, pensive and then said, “I’ll be thinking about you on Friday morning.” We smiled and said, “thank you.” 5 minutes later we arrived at the hotel…5 very quiet minutes. After the bellhop took the bags and Allison and Max were making their way through the revolving door, Ben stepped up to me, shook my hand firmly and looked at me deeply with his steely grey eyes. “I’ll be praying for you, Joe.” “Thank you, Ben.” And then Ben closed his trunk and said, “I knew I was waiting for someone today, I just didn’t know who until now.” I looked back at him momentarily and said “I’m glad it was us, Ben.”
Tomorrow is the day of tests…a lot of tests. Here is my schedule for Wednesday:
8:30 AM Sign in at Desk F12, Floor 1
9:00 AM CatScan
10:00 AM Echocardiogram
11:00 AM Chest X-Ray
11:10 AM Blood work
12:45 PM Meeting with Dr. Hammer, Cardiologist to review tests and get clearance for surgery.
2:30 PM 1.5 hour expectation meeting with Cardiovascular nurses – Review from start to finish of what to expect from the first the moment I come in the day of the surgery until I come home.
I thought some of you might like to know a little more about the operation. And as many of us know, there is only so much you can learn from reading. So, how about a demonstration? How about a video of the surgery? The following link is an edited excerpt of the surgery I’ll be undergoing on Friday. The video is only 6 minutes but the operation can last up to 4 hours. It is edited down to include only the actual repair. WARNING: While not overtly disturbing, the video IS graphic. As an added bonus, the video you will watch is of a surgery Dr. Marc A. Gillinov performed. He is my surgeon. Put aside that rare prime rib for a moment and take a look.
http://www.clevelandclinic.org/heartcenter/pub/guide/disease/valve/mvrepair.htm
~Joe
3 days left
We arrived in Cleveland this afternoon around 3:30. I knew Max would be a jet-setter, but I didn’t expect his first trip to be at 6 weeks, let alone to Cleveland. Our driver took us from the airport on the west side of Cleveland to the Clinic which is on the east side of the city. Ben, our driver who was about 65 years old and wore very comfortable shoes paired with a very uncomfortable suit said he moved here from Massachusetts 35 years ago. He pointed out the “sites” along the way. He showed us the theater where Tom Hanks got his start and then pointed out Jacobs’s field. With this I gave him my condolences on the Indians collapse. He was appreciative and then he said he was now rooting for the Red Sox. It was at this point that I realized that I need to conceal my fervor for the Yankees until AFTER my surgery. You never know who is rooting for whom.
Ben asked who wasn’t well. Allison and I looked at each other a little confused and then we realized that our hotel was on the Cleveland Clinic campus. Allison shared with Ben the upcoming events we had planned. Ben was quiet, pensive and then said, “I’ll be thinking about you on Friday morning.” We smiled and said, “thank you.” 5 minutes later we arrived at the hotel…5 very quiet minutes. After the bellhop took the bags and Allison and Max were making their way through the revolving door, Ben stepped up to me, shook my hand firmly and looked at me deeply with his steely grey eyes. “I’ll be praying for you, Joe.” “Thank you, Ben.” And then Ben closed his trunk and said, “I knew I was waiting for someone today, I just didn’t know who until now.” I looked back at him momentarily and said “I’m glad it was us, Ben.”
Tomorrow is the day of tests…a lot of tests. Here is my schedule for Wednesday:
8:30 AM Sign in at Desk F12, Floor 1
9:00 AM CatScan
10:00 AM Echocardiogram
11:00 AM Chest X-Ray
11:10 AM Blood work
12:45 PM Meeting with Dr. Hammer, Cardiologist to review tests and get clearance for surgery.
2:30 PM 1.5 hour expectation meeting with Cardiovascular nurses – Review from start to finish of what to expect from the first the moment I come in the day of the surgery until I come home.
I thought some of you might like to know a little more about the operation. And as many of us know, there is only so much you can learn from reading. So, how about a demonstration? How about a video of the surgery? The following link is an edited excerpt of the surgery I’ll be undergoing on Friday. The video is only 6 minutes but the operation can last up to 4 hours. It is edited down to include only the actual repair. WARNING: While not overtly disturbing, the video IS graphic. As an added bonus, the video you will watch is of a surgery Dr. Marc A. Gillinov performed. He is my surgeon. Put aside that rare prime rib for a moment and take a look.
http://www.clevelandclinic.org/heartcenter/pub/guide/disease/valve/mvrepair.htm
~Joe
3 days left
Allison
So we’re off tomorrow; up, up and away to a city I never thought I would visit. It isn’t as if there is something wrong with Cleveland. Quite the contrary. Cleveland is one of those innocuous, nondescript cities. It isn’t Miami, LA or NY with the flash or fashion. It isn’t San Francisco, Chicago or New Orleans with their foodies or rich cultural tapestries. Now don’t get me wrong. Cleveland does have the Rock and Roll Hall of Fame. And they have the Browns, whom until recently I believed were named after the color. “Oh no, here comes the color brown. I’m so scared!” Actually they were named after their first coach, Paul Brown. Regardless, still a tough franchise to merchandise. But Cleveland may become one of my favorite cities once the good doctors do a little nip and tuck. Once there, I’ll give you my limited first hand thoughts. You’ll have to wait a day because Wednesday I have 8 hours of tests. Jeez…8 hours.
But this post is really meant to say thank you to the person from whom I’ve gathered the most strength during the last few months; my wonderful wife, Allison. Allison, thank you for your courage, resolve and support. This surgery is a minor speed bump for you and me. When we get back and I’m feeling up to it we will return to our normal life. The fine dining at Denny’s, the NASCAR races, the Swingers’ nights, building our lawn ornament collection and plenty of our favorite boxed white zinfandel.
~Joe
4 days left
Sunday, October 02, 2005
This is when...
It is when the sun sits low in the sky like a child’s giant orange sucker.
It is when the crickets have retreated to the after-grass while the shadows curl lazily around the maples.
It is when the air is crisp and has the faint smell of cedar embers from an early season fire.
It is when leaves rustle with the faintest of breezes, their edges just beginning to turn.
This is when the Red Sox suck most.
~Joe
5 days left
It is when the crickets have retreated to the after-grass while the shadows curl lazily around the maples.
It is when the air is crisp and has the faint smell of cedar embers from an early season fire.
It is when leaves rustle with the faintest of breezes, their edges just beginning to turn.
This is when the Red Sox suck most.
~Joe
5 days left
Saturday, October 01, 2005
Dear Max
Dear Max,
I was saving this for when you got older, but then I realized I had nothing to lose by sharing with you what I have so far. Mom doesn’t even know this but about a week before you were born I started writing a list of observations, beliefs and in some cases personal experiences that in time, you will either call upon as counsel, disagree with or experience for your self. The sources vary as much as the topics. Some of the below I’ve read, some have be shared with me by your Nono pictured with you and me above and some conclusions I’ve reached on my own. I’ll keep adding to the list, but this is what I have so far…
1. Family comes first.
2. Even though family comes first, they can be a pain in the butt.
3. You can pick your friends but you can’t pick your family…pick wisely.
4. Food is one of the pure, unadulterated joys in life.
5. Women love a man who can cook.
6. Always respect and love your mother. You’ll never understand how much she and I love you until you have your own children.
7. The Yankees, the Giants and the Knicks.
8. You’ll learn more about a person by listening to them for 1 minute then you will by talking to them for 10 minutes.
9. People love to hear themselves talk.
10. Learn as much about your heritage as you can; it is a tremendous part of what makes you you.
11. Buy a house/apartment/condo as soon as you are able.
12. It is OK to be scared.
13. It is OK to admit you are scared.
14. It is NOT OK to avoid your fears…they will only get worse if you do.
15. Whether you think you can or you can’t…you are right.
16. Sooner or later the other guy will blink.
17. Confidence can compensate for talent.
18. Arrogance can undermine talent.
19. Save early and often.
20. Don’t mortgage the future for a lifestyle today.
21. Things don’t bring you happiness.
22. You can’t be happy with someone else until you are happy with yourself.
23. Don’t take your health for granted.
24. Get a check-up every year.
25. With all people, no matter what the interaction, always exceed expectations.
26. You have to believe in yourself before others will believe in you.
27. Respect is earned.
28. First impressions are almost always right.
29. People judge you by what you wear and how you speak.
30. It is always better to be overdressed rather than underdressed.
31. Get in first, leave last.
32. Exercise is an excellent confidence booster.
33. Things are never as good or as bad as you think they are.
34. No matter what you do, do it with the highest degree of integrity.
35. The past is done and the future will come but today is malleable.
36. If you’re going to pull weeds, make sure you get the roots.
37. Don’t EVER put sugar in your tomato sauce.
38. Hold the door open for women.
39. Anyone older than you should always be addressed as Mr. or Mrs. unless they tell you otherwise.
40. Watch the ball not his feet.
41. If you haven’t failed at something you aren’t trying hard enough.
42. To make octopus tender you need to cook it with a wine cork.
43. Never burn bridges.
44. Learn to trust your instincts.
45. Never pay for the extended warranty.
46. The best time to buy a new car is in September.
47. Never buy a new car.
48. Yes, you can shave against your beard.
49. If someone overly flatters you without them really knowing you, don’t trust them.
50. Learn a second language, only Americans are too self absorbed to only know English.
51. Travel as much as you are able to.
52. Respect the customs of the country you are in.
53. If you don’t ask her, you’ll never know.
54. No, I didn’t have the internet growing up.
55. Yes, I know that makes me old.
56. Flirting can get you more than dates.
57. Don’t go to a gun fight with a knife.
58. Do what you love; the rest will take care of itself.
59. It is as important to know your weaknesses as your strengths.
60. Live for today but plan for tomorrow.
61. You will learn to love foie gras.
62. Be wiser than other people, but never let them know.
63. One of the symptoms of an approaching nervous breakdown is the belief that one's work is terribly important.
Love,
Dad
6 days left
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