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Hostess Rise'
Forum Leader
Username: Risa
Post Number: 10522
Registered: 05-2003
| | Posted on Sunday, October 11, 2009 - 09:03 am: | 
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I was born September 18, 1976 with alpha1 antitrypsin deficiency. My mother noticed that there was something wrong with me, I wouldn’t eat or absorb milk and I had failure to thrive. They at first didn’t know what was wrong with me, so my mother had me tested. Tests soon showed that I had alpha 1 antitrypsin deficiency which is a rare lung disorder. Its a genetic disorder caused by defective production of alpha 1-antitrypsin (A1AT), leading to decreased A1AT activity in the blood and lungs, and deposition of excessive abnormal A1AT protein in liver cells.[1] There are several forms and degrees of deficiency. Severe A1A deficiency causes emphysema and/or COPD in adult life in nearly all people with the condition, as well as various liver diseases in a minority of children and adults, and occasionally more unusual problems.[2] It is treated by avoidance of damaging inhalants, by intravenous infusions of the A1AT protein, by transplantation of the liver or lungs, and by a variety of other measures, but it usually produces some degree of disability and reduced life expectancy. The disorder itself is usually found only in the Caucasian race and its genetic, meaning the mother and father both have to be carriers. After my mother found out I had this illness, she had all of my brothers and sisters tested, (I was the last of 4) and it was soon showed to be that my older brother also had the disorder, but for some reason or another, which I don’t think is known among doctors, he did not have liver problems. After I was diagnosed as an infant, I then spent the first 10 years of my life in and out of CHLA in Los Angeles for GI bleeds. I had severe Ascites of the Liver and my belly was bigger then my head as a child. Because of the emphysema I was tired all the time and my mother had a hard time taking me to high elevations because I couldn’t breathe. I would throw up blood and have bloody stools. My liver was failing. At age 3 I had 3 ft of my small intestine removed, (In which for reasons I’m not clear of). I then slipped into a coma and they told my mother I wouldn’t make it to see my 4th birthday (I think these are the ages). In the late 1970's or early 1980's, when liver transplantation was new, doctor’s offered my mother to transplant me, but because back then the only rejection medication they were using was prednisone, my mother declined because she would see the children pumped full of this steroid with big cheeks and other severe side effects and my mother didn’t want to put me through that. (She probably was given information that I was stable, but I’m not sure). In 1985, researches finally came out with the drug Cyclosporine, which finally increased the success of transplantation. I was soon worked up for a new liver and placed on the UCLA Transplantation list. During the summer of 1986, Channel 7 news, (ABC News) did a cover story about me and how I was on the waiting list for a new organ. In December, I think it was like 1 week before Christmas, my mother's beeper rang. They had a liver for me from Texas. (I don’t have details I don’t remember). I was flown by helicopter from my town in La Crescenta, Ca to UCLA Medical Center. 12 hrs later I was transplanted. Because transplantation was still new, my transplant operation took a total of 12 hrs. It was so long that the back of my heels eroded from lack of circulation, causing ulcers. When my transplant was over, I was stable for a little bit, but then I declined again. I went into not only liver failure, but kidney failure as well. I lost I think it was 1/4 to 1/2 of my kidney function, again, I’m not sure, ask my mom. I was very, very jaundice (yellow). And without another liver, I would die. The Lord then gave me another liver. This time the liver was from Minnesota. 3 weeks later, I was wheeled into the hospital room again. I remember the surgeon, Dr. Busitil, (who is now a famous surgeon), told me that they were going to transplant me again, and I told him that I was ready. I was more than willing to go back into the operating room. I then got the second transplant. This time it took, I was given a third chance at life. I slowly got better and got released. 1 month later I rejected. I rejected 2 more times after that once in 1989, and the second time in 2000. I was the one of the first group of 100 transplant recipients to receive the drug cyclosporine. In 1996, I gave birth to my little girl. Despite the fact that I had to take anti-rejection meds throughout my whole pregnancy, my daughter came out completely healthy. In 2005, I was diagnosed with thyroid cancer. I had a complete thyroidectomy with radiation and have been cancer free ever since. I’m a born again Christian and I hope to serve the Lord by giving hope to those who are either waiting for a transplant or have just received a transplant. To let them know that there’s hope and that Jesus died on the cross to give us not only a new organ but to give us life. I owe my many chances of life to God, because he is the one that moved the hearts of those parents to donate the organs to those who are dying. The gift of life is precious and not to be taken for granted. I hope I have brought hope and encouragement to anybody who reads this testimony.
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Hostess Rise'
Forum Leader
Username: Risa
Post Number: 10815
Registered: 05-2003
| | Posted on Tuesday, October 27, 2009 - 08:10 am: |
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The story above was written by Amy.
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HepatitisCGiftOfLifeLiverTransplant
Member
Username: Hepatitiscgiftoflifelivertransplantaugust302008
Post Number: 14
Registered: 05-2009
| | Posted on Sunday, November 22, 2009 - 09:45 pm: |
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My 2nd Thanksgiving with My Donor Within 
I am 1 year 2 months 21 days About on the days. August 30 2008 Liver
So far my liver is doing will had my ups and downs during the year. My Biggest problem is Huge Weight Gain I Know That sounds child like to complain about! I have bad neuropathy and if I don't shed this weight I am putting My Donor Within In Trouble. Bad Enough I Have Hepatitis C.
My Viral Load Is 27 Million Plus I Am From The Old School I Can't Believe It Doesn't Matter What Your Viral Load Is... If It Didn't Matter Transplant Wouldn't Be Running The Test So Often.
This Weight Is The Hardest I Have Ever Faced!!!
Would Love Support Anyone Else Gain A Lot Of Weight?
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Hostess Rise'
Forum Leader
Username: Risa
Post Number: 11290
Registered: 05-2003
| | Posted on Monday, November 23, 2009 - 08:02 am: |
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Hi Cathy
I am a lung recipient. I have found that I have too many carbs, my feet hurt. I have seen this happen time and time again. This is the only suggestion I have for you. Perhaps buy a glucometer and keep your sugars in control or to a minimum and you will feel better overall. It will take time to see the difference so be patient.
Keep a diary of the food that you eat. Talk to a professional and follow their suggestions. Many illnesses are tied to poor food choices. I believe if we feed our bodies with too many of the wrong foods, we will face many health challenges.
I would get outside in the fresh air and Walk! We are here for you.
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Munindra Medhi
Member
Username: Mmedhi
Post Number: 1
Registered: 06-2012
| | Posted on Wednesday, June 06, 2012 - 09:17 am: |
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Hi, I am Munindra Medhi, from kolkata, india......my loved one is suffering from nonchirotic portal hypertension for the last 10 years and for that doctors advised us to transplant her liver as soon as possible...Her father was admitted in the hospital for transplant, but unfortunately did not meet full criteria for transplantation...we are now not able to finding out anybody who can willingly donate a part of his/her liver to save her love...if anybody wish to help me and my family in this regard may contact me at 09051818718/09859069162...or muni123456@rediffmail.com. (blood group should be o+).
any information regarding this will also be greatly appreciated. thank you. |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 17496
Registered: 05-2003
| | Posted on Thursday, December 20, 2012 - 03:48 pm: |
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test post test
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