Showing posts with label heart transplant. Show all posts
Showing posts with label heart transplant. Show all posts

What is it like looking down the barrel of a heart transplant?

HeartI have been working on documenting my heart condition of 2005. After months of writing it down, editing, rewriting, and getting the courage up to post it I have finally done it. Here is my recount of May 3, 2005, before and after.

In 2004 I was diagnosed with a heart condition known as Idiopathic diliated cardiomyopathy - A very weak and enlarged heart with no known cause. I was under treatment taking heart meds and water pills (I call pee pills). Then on May 3, 2005 As I was typing an email to a client, I broke out in a cold clammy wet sweat from head to toe. At the same time I thought I had to go to the bathroom. I went in and nothing happened but I sure felt I had to go. I got up and went by the fan to cool down and decided at that time to lie down. I told myself just for a minute and things would get better. As I layed there my chest started hurting more and more like there was a 500 pound Monkey sitting on it. That is when I knew something was seriously wrong. I was able to get up and grab my keys, lock to office door and head down a flight of stairs and get in my car and headed for the house (stupid thing to do). I recall barely making it to the house and through the door when I told my wife something is wrong and to get me to the hospital. She wanted to call 911 but I told her to drive me to Mercy hospital. She frantically loaded me and the baby into the car and drive like a bat out of hell to get me there. We arrived there at about 11 am and some how I was able to walk to the front counter as Tammy parked the car and grabbed our baby. I told the clerk I think I am having a heart attack she told me to sign in and about that time she looked up and saw a young obese male pale white and sweating profusely hutched over the counter she said, wait come right back. She took my blood pressure and her eyes went wide and rushed me to the back to the ER. That is when all the fun began, they did all kinds of things to me to stabilize me (I don't recall much of it for some reason).

My cardiologist Dr. Mendelhson had an EKG done on me before he arrived. They decided to admit me and when I got up stairs to a room my cardiologist came in to talk to me. He basically told me that he would not be able to continue care for me. That my heart condition has deterated tremendously. My Ejection Fraction was 10-15% and 2 months prior was 30-35%. He began to talk to us about seeing a specialist that deals in this kind of thing. I recall him saying heart transplant facility once but just thought it was a place that works on rehabilitating hearts. So Tammy and I said yes lets make the arrangements to go and told him to talk to them and I would drive down in a day or two. Well that is not what he had in mind.

At 7 pm that night I was loaded into an airplane life-flighted down to San Francisco and taken to California Pacific Medical Center (CPMC). I remember being alone and wheeled into only who knew at that time. The nurses that flown down with me were extremely nice and supportive and thanks to that I did not worry to much. Tammy was unable to fly down with me because she needed to secure care for the kids. The next day she and her dad (Greg) drove down. My Dad and Uncle B drove down the next day as well. So for the next 5 weeks I was in California Pacific Medical Center being worked up for a heart transplant and trying to rehabilitate my heart.

It's really hard for me to write about my 5 weeks. They did so much testing on me that I honestly am not sure all of what they did. I know I had three Pulmonary artery catheter, in medicine pulmonary artery catheterization is the insertion of a catheter into a pulmonary artery. Its purpose is diagnostic; it is used to detect heart failure or sepsis, monitor therapy, and evaluate the effects of drugs. The pulmonary artery catheter allows direct, simultaneous measurement of pressures in the right atrium, right ventricle, pulmonary artery, and the filling pressure ("wedge" pressure) of the left atrium. They made an incision in my neck and threaded a tube with a balloon on the end. The insertion process was NO fun what so ever. The first time did not go to bad it was scary but they got it in with little trouble. Oh but the second time it took three doctors before I finally said enough was enough to either get someone that new what the *@#$%! was going on or forget it. They called in the ICU doctor and he came over and wham bam it was done. I was glad for that but ticked off it took that many people. The only good thing about the Pulmonary artery catheter was that every morning at 5 am they could draw blood from it instead of poking me every time. If your one to look on the bright side that is it.

I had a hiccup in insurance that first week so they just stabilized me while that was sorted out. Probably a good thing cause who knows, they were going so fast that I may have had a transplant before any other test were done. They talked about inserting a ventricular assist device (VAD) that would help my weak heartbeat. Luckily one of the nurses in strict confidence told Tammy and I to try and not get that done without some more testing cause once you get a VAD it is a long straight shot to a heart transplant.

After about 2-3 weeks I was transferred to Ernie land (aka Transitional Cardiac Care Unit (TCCU)) this is special unit for those waiting for heart transplants. This is were I was given a little more freedom for movement. I was allowed to walk around the ward and down the hall while be attached to special heart monitors. They started me on rehabilitation for things like getting out of bed, walking, showering, and getting dressed. Surprisingly I had to relearn how to do these things and also learn new techniques to limit the stress on my heart. They had a spot down the hall that was a roof garden. This is a place that was outside that overlooked the city. The nurses new how much I loved San Francisco and anytime I could be outside in the foggy city lifted my spirits. Once a day they had one of the helpers walk out there with me. Normally it was pretty cold out there and the nurses would bundle up but I would go out in my shorts, slippers, and hospital gown. Those short few minutes allowed me to escape the hospital and reflect on life without heart monitors beeping at me.

The physical therapy depart that was teaching me a lot of the stuff we take for granted got wind that I loved the city and the Golden Gate Bridge. They said if I started walking on a treadmill that they would take me to there department for a special treat. They said that I would like there offer to see the city in more detail. That sparked me to get up and walk the treadmill. After about 2 days of walking Barry came and got me and walked me around the corner to there department. There they had exercise equipment to help my rehabilitation. There was two treadmills and they were facing the most beautiful site of all. This corner of the hospital looked out at the Golden Gate bridge. I was in such amazement I wanted to stay there and just walk forever to see that. They told me as long as someone was there I would be allowed to come down and do the treadmill. Seeing the Golden Gate bridge daily was all I need to get me moving. I wanted them to take the treadmill outside on there patio so that I could walk in the cool weather and feel like I was on the Golden Gate Bridge. They could not do that but boy it would have been something.

I spent my 35th birthday in the TCCU I was extremely bummed about that. The nurse were kind enough to wish me a happy birthday even though I did not want to be reminded. One of the doctors brought me cupcakes for my birthday which was really nice since they had me on a strict diet. I was allowed to have one and I shared the rest with the nurses that were on duty that day.

Overall my 5 weeks were intense, yet the staff was caring and since I made it out alive and without a heart transplant I would say it was a good experience.

I did not need a heart transplant thanks to Vertical Gastrectomy, weight loss surgery. You will need to read the Before and After post about my weight loss surgery and how it helped save my life.

JB
WLS and Update

Were do I begin since my last Blog.

February 28, 2005 was my last day at Ch2m Hill. I went on to work for myself with one main contract in hand for NSI.

Things were going good and looking up as far as financial stability was going. The one thing that happened that was not good was I had to drop the family for medical insurance. I keep on with COBRA from Ch2m Hill.

THEN

May 3, 2005 - As I was typing an email to a client, I broke out in a cold clammy wet sweat from head to toe. At that time I thought I had to go to the bathroom so I did and nothing but I felt really bad. So I got up and then went by the fan and told myself just laydown for a minute or two and cool off. As I did that my chest started hurting. That is when I knew something was wrong. I was able to get up and grab my keys and head out for the house (stupid thing to do). I bearly made it to the house when I told my wife something is wrong and to get me to the hospital. She wanted to call 911 but I told her to drive me to Mercy hospital. I arrived there at 11ish am and told the clerk I think I am having a heart attack. She told me to sign in about the time she looked up and saw me she said, wait come right back. She took my blood pressure and her eyes went wide and rushed me to the ER. That is when all the fun began, they did all kinds of things to me and stabilized me. My cardiologist Dr. Mendelhson had an ECG done on me before he got there. They decided to admit me and when I got up stairs to a room my cardiologist came in to talk to me. He basically told me that he would not be able to continue care for me.That my heart condition has deterated tremendously. My Ejection Fraction was 10-15% and 2 months prior was at 30-35%. He began to talk to me about seeing a specialist that deals in this kind of thing. I recall him saying transplant facility once but just thought it was a place that works on rehabilitating the heart. So Tammy and I said yes lets make the arraingement to go. I told him to talk to them and I would drive down in a day or two. Well that is not what he had in mind. At 7 pm that night I was life lighted down to San Francisco and taken to California Pacific Medical Center (CPMC).

At 7 pm I was loaded up and flown to SF and arrived in the hospital shortly after 9 pm. I was alone but in good hands. The nurses that flown down with me were extremely nice and supportive. Tammy was unable to fly down with me because of the kids. She inturn made arrangements for the kids and drive down the next day. My Dad and Uncle B drove down the next day as well.

So for the next 5 weeks I was in CPMC undergoing all kinds of test and evaluations. During the first 2 weeks I was in CCU. They had Swan Gans in me and IV's and checking my numbers every two hours. I saw probably 10 different doctors during this time. They decided I needed to be worked up for a heart translant. They wanted to prepare incase I needed to get on the transplant list. So for two weeks I was being told I was going to in for a long haul and would be on a transplant list. I finally had a break down about 1 1/2 weeks into my visit. I called Tammy and told her that I need to have someone down here with me at all times. Tammy was back and forth during this time. The doctors were just throwing stuff at me to fast. I need a representive with me. So between Tammy and my Dad I had someone with me for the next couple of weeks. Finally I had to say slow down people and let's discuss medications before putting me on a heart transplant list. So we started a vigours medication regimate. Over the next 2-3 weeks I started walking 30 minutes on the treadmill. I met with the mechanical heart doctor and he said your records don't match the way you look. He actually asked me what I wanted to do, I told him since we do not really know what had caused the heart to grow week and the best idea was the weight and sleep apna I have had all these years that was it. I told the doctor why can't we look at having Weight Loss Surgery (WLS). He agreed and so began that process.

My cardiologist called Pacific Laparoscopy to come speak to me. They send over a PA to show me the different surgery's. Then Dr. Robert Rabkin came over to meet with me. He then had his brother Dr. John Rabkin come in and speak to me and talk to me about what they recommended for me. They want to do Vertical Gastrectomy (VS) see attached photo showing my surgery. I agreed and they started the approval process with Blue Shield. During this time they sent Barbara Metcalf a very nice person. She was so happy for me and looking forward to seeing my progress.

As you can imagine Blue Shield denied my life giving surgery. So down and out I told the cardiologist unless were doing some thing else it was time for me to leave. I would fight the insurance from home and not the hospital. They finally released me on June 7, 2005, just in time to see my daughter graduate from 8th grade the next night.

That brings us to the end of June. I filled an appeal with Blue Shield and for 30-days I called the case manager every day or every other day checking in and telling her this is a medical need. Then on July 22, 2005 I received a call from Blue Shield and I just knew they were denying me again. Well the call was a great one...

I WAS APPROVED!!!!!!! (July 22, 2005 letter says)

I went back to work with Ch2m Hill on July 25, 2005. I have done pretty well so far. I have VS surgery on August 30, 2005 down in SF at CPMC. I have to go in on the 29th to have some precautionary measures down before the surgery the next day.

For the next 3 weeks I will be working, yet taking it easy. I can not have any issues before then. Let me list a couple of Newsgroups that I have been turned on to.

Pacific Laparoscopy - http://health.groups.yahoo.com/group/DS_PacificLaparoscopy/

VS newsgroup - http://health.groups.yahoo.com/group/sleevegastrectomy/

Some statistics before surgery. I am 35 yrs old, I am 6'1" and weight 320 Ibs, BMI 43.3.

That will be it for now. I may or may not be back until after my surgery. Then I plan on keeping my Blog up-to-date with my progress.

Have a great week.