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Hostess Rise'
Forum Leader
Username: Risa
Post Number: 10523
Registered: 05-2003
| | Posted on Sunday, October 11, 2009 - 09:04 am: | 
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I suffered from a genetic condition called Gardener's syndrome (FAP). This disease is a mutation of cells in the intestinal tract and stomach area where polyps (cancerous and non-cancerous growths) grow. My mom passed away 12 years ago from this condition. When I found out that I also had it, I began many years of colonoscopies and maintenance medications to shrink the polyps. Nothing really worked. In 2005, my gastro doctor informed me that I needed to undergo surgery to re-section my intestines (a J-pouch), otherwise by the age of 40 I had a 100% chance of having colon cancer. Upon undergoing evaluations and prep work for surgery, they discovered a desmoid tumor the size of a tennis ball that was wrapped around my intestinal tract.
I went to Ft. Lauderdale in January 2006 for exploratory surgery, but they could not do anything with my intestines because of the size and location of the tumor. I began seeing an oncologist in February to try all sorts of medications to try and shrink the tumor and at that time, a transplant was mentioned. All of the medications made me extremely sick, I suffered from lots of painful ovarian cysts, had weekly CT scans and ultrasounds, but after 6 months time, the tumor was not shrinking. My doctors in Ft. Lauderdale recommended a world renowned transplant specialist in Miami- Dr. Andreas Tzakis at Jackson Memorial Hospital. I went for my consultation in Aug and went through all of the insurance stuff to get accepted on the national list. On Oct. 4th, I was put on the list. After 11 days on the transplant list, I was called saying that organs were available for my transplant. I drove to Miami- a 4 hour drive from where I live in Orlando. On Oct. 17th, 2006 I received my transplant. Six of my organs were transplanted that day- my stomach, spleen, pancreas, duodenum, small intestine and large intestine. It was an 18 and a half hour surgery. I did really well.
I went back to recover at my Dad's house in Clearwater on November 30th. Unfortunately I was only there for 9 days before I was rushed back to Jackson Memorial and later diagnosed with perforation of the intestines. I had emergency surgery to repair that but only had a 3 hour window of survival.
I have had a few complications from the transplant. Dehydration was a huge issue for me to overcome and because of my Prograf levels went in the hospital for renal failure. I had to have stints put in my ureter then. I have had major problems with eating in general, but finally got those under control. I lost all of my hair because of the medications. I developed diabetes and had to inject myself 5 times each day with insulin and suffered from really high blood pressure.
Things are good right now- no problems. I get my blood tested monthly and have had nothing but excellent reports. I do a monthly protein test also to check for levels of citrilline showing possible rejection. And, I am down to taking only 6 pills total each day!
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Michelle
Member
Username: Mponto
Post Number: 4
Registered: 02-2009
| | Posted on Thursday, September 03, 2009 - 04:24 pm: |
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My Story
I apologize for the length, but I am hoping to maybe possible connect with anyone who may even remotely have a similar story. Right now, I am the only one in world that we know of with my complex condition. I also look forward to connecting with all other transplant recipients!
I was born with a rare blood disorder called "Congential Dyserythropoietic Anemia Type II". This disease affects the production of red blood cells, therefore resulting in anemia. This left me very tired and easily exhausted however my body adjusted to the anemia as best it could. I would get sick more easily than a normal person and it would always hit me harder. I didn't know any different and my body just learned to deal with the flu's and bugs as best it could.
In 1989 I became very sick. I had severe abdominal pain, weakness and fever. My doctors kept telling me I had the flu but I knew there was no way a flu could make a person this sick. After weeks of suffering, I was finally admitted into hospital with a severe infection. After being on the verge of cardiac arrest, I was finally transferred to a major hospital in the city. They discovered I had gallstones and that my spleen was taking my blood away from me. They scheduled me for a splenectomy (removal of spleen) and a cholecystectomy (removal of gallbladder) to be done as soon as possible. This was a very hard decision for my parents as it was considered major surgery and it was a life or death decision. I guess they made the right decision as I am still here today!
Once I recovered from the surgery, life went on and things actually got better. My health had improved quite a bit and I thought, finally....A normal life! Well that lasted until around 1992. At one of my routine check-ups, my doctor decided to do some extra bloodwork. This is when they found out I had iron overload. It comes in two forms, the genetic type called Hemochromotosis and the non-genetic type which is what I have. If left untreated, this disease can lead to the destruction of all your major organs, causing them to shut down and die. My levels were quite high so they scheduled me in for a liver biopsy right away as the liver is the first organ it attacks. The liver biopsy showed some liver damage and mild cirrhosis. They decided the best treatment for me at the time was a drug called Desferrioxamine. This drug has to be infused subcutaneously (intra-muscular) over a period of ten to twelve hours overnight. I did this treatment for a year until I just got fed up with poking myself every night. The doctors agreed my levels had come down enough to give me a break.
A few years later my iron levels had increased so I was sent for weekly phlebotomies, also called blood-letting where they basically just bleed you. It is exactly the same process as donating blood, only they throw my blood away! This lasted for a few years.
April 2007 - I started to get sick with abdominal pain and swelling. This would come and go for no reason it seemed and last anywhere from days, to up to a week or more. I was sent for some tests which had all come up with nothing. I was then referred to a Gastroenterologist, but couldn’t get in for 7 months.
By July the pain and swelling had become worse and more frequent. My doctor said there was nothing more she could do and that I should just go to the University of Alberta Hospital Emergency where I would get to see a specialist right away.
During the months of July and August, I was seeing a Gastroenterologist, Hepatologist (Liver Specialist) and had numerous tests done such as an MRI, CAT scan, x-ray, blood work, and an ultrasound. I also had three ERCP's (Endoscopic retrograde cholangiopancreatography).They found a total of eleven esophageal varicies which were possibly bleeding. They placed rubber bands around the varicies to cut off the blood supply so they would no longer bleed.
By September, I still had to go to emergency for pain control and the doctors still had no idea what was causing it.
October came and I was sent for a liver biopsy and a liver scan. The results showed that I had some liver damage and a blood clot in the portal vein to my liver. My Hepatologist estimated that I would need a Liver transplant in five to ten years. This was all they could find and still had no idea why I was having so much pain and swelling.
November 17, 2007 – I woke up in the middle of the night passing blood. By morning I was so weak that we headed to the hospital. My hemoglobin had dropped critically low from all the bleeding.
They had stabilized with blood transfusions, but a few days later I took a turn for the worst and started bleeding uncontrollably. I was immediately rushed in for emergency surgery. The doctors told my family I may not even make it through the surgery and if I did, it was possible I could come out of it as a vegetable. Well, I made it through the surgery and I must have had more than one angel looking over me that night. The doctors told my family that at one point during the surgery they were losing me and there was nothing they could do. They were just about to give up when a miracle occurred. The bleeding stopped and the surgeons were able to finish their job. During the surgery they realized that I needed a liver and small bowel transplant.
The next few weeks were filled with test after test and a fight for my life like no other I had ever experienced. A horrible infection had plagued my body and the doctors just couldn't get it under control. Until this infection was cleared up, I could not be placed on the Transplant list. This was very hard to deal with as I needed the transplant in order to save my life.
December 17, 2007 - It was midnight when the doctor and a nurse came in. We had no idea what was going on but we certainly weren't prepared for the news we were about to receive. A donor had been found and they were doing the transplant in the morning......We were stunned! I had a terrible infection therefore I wasn’t even on the transplant list. They said the donor was almost a perfect match, and they couldn't pass it up. They felt if they didn't do something soon, I would probably die in a few days. My mom cried but somehow I already knew I was getting the transplant that day. I don't know if it was a dream, a vision or what, but I had heard the doctors telling my Dad I was getting the transplant.......which did not happen in real life. I was under the influence of many medications and had a lot of weird hallucinations, but this one had become a reality.
7:30am I am being wheeled into surgery. Eight hours later I am back in ICU. The surgery was a success but a lot bigger than what the doctor's had anticipated. The infection had spread throughout my body and damaged more organs than previously thought. I received a liver, small bowel, pancreas and stomach. This is the first transplant of this kind in Western Canada.
After the transplant I battled numerous infections and a bleed which resulted in me needing 7 more surgeries. New Years Eve after one of the washout surgeries, I had aspirated when they pulled the breathing tube. I couldn’t breathe on my own and asked for the tube to be put back in.
I was taken back to ICU and things aren't looking good. I am on life support with the machine doing 80% of my breathing and they have me on dialysis because my kidneys were now failing. I was given a medication that paralyzes the body putting me in a medically induced coma for eleven days.
The next few months are spent battling more infections, learning how to sit, walk, introducing food into my new stomach, and eat. After four months in hospital, I was finally discharged! October 2nd, 2008 – I went in for the ileostomy reversal…the most anticipated surgery that I could wait to get over with to feel normal again.
The surgery went well and I was back on the ward. I was feeling ok with just some mild pain for the first two days post-op but by day three, things started to go down hill. I was having severe abdominal pain and my blood pressure had dropped. I was immediately transferred to ICU. My bowel had started leaking causing another infection which sent me into septic shock. I was sent back to the OR to get it cleared up.
I was kept sedated for the next few days to let my body heal. I was then sent back to the OR to bring back the ileostomy...what I had dreaded most.
October 9th, 2007 – They took out the breathing tube…but shortly after I feel in to a deep sleep. This wasn’t good in my condition. They think it was caused by a drug mix-up.
October 11th, 2007 – I am officially out of the woods and I am back to square one learning how to sit, walk and eat again. Finally I was discharged on October 27th, 2007.
After 11 surgeries total, here I am….with hopefully one more successful surgery to go!
Thanks for reading! |
papillonbleu
Forum Leader
Username: Papillonbleu
Post Number: 2208
Registered: 10-2007
| | Posted on Saturday, April 14, 2012 - 07:11 am: |
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My story of hope renewed or rather reborn
I first began to have digestive troubles when I was about 13 and began refluxing, and occasionally vomiting, foods and experiencing acid. A manometry showed that my lower esophageal sphincter was loose and thus allowing food and acid to reflux back up into my esophagus. In August 1995, I had surgery to place a full Nissen fundoplication to treat my diagnosis of GERD. I did okay with that for awhile except for belching more often and sometimes at embarrassing times. However, soon after I started college, in 2000, I started to have trouble with swallowing that gradually got worse such that it took me longer and longer and became more difficult to eat each meal. The cause was eventually discovered to be a build up scar tissue from my open surgery for the Nissen fundoplication. When the scar tissue was removed in a surgery in the summer of 2002, the Nissen fundoplication was also taken down. I soon began to experience new problems along with the reflux returning. I was officially diagnosed with idiopathic gastroparesis later that year while still in college, and shortly after, due to trouble with keeping enough food down from nausea, reflux, and vomiting and thus losing weight due to severe malnutrition, I had to become completely dependent on j-tube feedings in order to bypass the stomach because the other available medications and treatments did not help me to be able to eat enough orally. During this time, I had a gastric stimulator implanted to see if it would help with my nausea and vomiting, but it did not help me. I was able to obtain my bachelors with a double major in French and the Classics thanks to the j-tube feedings. However, as my condition worsened, I had to stop my attempt to get a Master’s degree, and I eventually came to rely totally on TPN, or intravenous nutrition, which eventually ruined my liver as my liver turned out to be extremely sensitive to it such that my calories had to be kept low to try and prevent or slow any damage. However, damage still occurred. I was told I could possibly die as a result of my condition, but fortunately, the doctors who were constantly seeing me in the hospital for my multiple line infections brought up the possibility of a small bowel and liver transplant. Then when I went down to Miami, FL and met with the transplant team at the University of Miami/Jackson Memorial Hospital, I learned that I would be receiving a new stomach, liver, spleen, pancreas, small and large intestine and would be in the talented hands of Dr. Andreas Tzakis. I waited for about three months until I received the call that resulted in me receiving the best gift I could ever imagine right on the day of my 25th birthday, October 6, 2005, as if God was putting his blessing on it and telling me even then that I would make it. I had a difficult recovery involving a an almost four month stay in the ICU due to a lung collapsing, and it took some physical therapy to get the strength to walk and eat again on my own, but all of it was certainly worth it and I had wonderful support from the doctors and nurses who helped me by encouraging me with their kindness. I feel blessed to have received this wonderful gift, and my life has been dramatically changed by it. Although I have not yet been able to return to work or to school, I have found new goals for myself and become involved in support groups online and volunteered in ways that have allowed me to find good and hope in each and every moment. I thank God, my donor family, my doctors, nurses, family, and so many others daily, for without them, I would not be who I am and where I am today. This experience has taught me how important human connections are, and how much more beautiful the world becomes when these are made and cultivated. My hope faltered once, but not again.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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Hostess Rise'
Board Administrator
Username: Rise
Post Number: 17371
Registered: 05-2003
| | Posted on Tuesday, May 08, 2012 - 02:20 pm: |
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Hi Bobbiejo
Thank you so much for sharing your story in our new section here.
It is an honor to know you. You are quite the special lady around here.
I will always remember the day I saw your news story on TV. I remember they spoke about your tx date surrounding your birthday.
God Bless You always!
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