To get the chat room rocking with conversation come here to schedule a time to chat with your fellow transplant friends. Meet new people, discuss different topics/issues and relate to others who understand what your going through.
Please Select Your Transplant - Or Tell Us How Else You Were Touched by Transplantation:
Recipients: In This Space, Feel Free To Write About Those You Are Grateful to for Receiving The Gift Of Life:
I am a recipient of a Small Intestine (aka Bowel).
Recipient: What Type of Donor Did You Receive your Gift of Life From?
Which Transplant Medication(s) Do You Take?
Prograf and Rapamune
What Do You Do For a Living? What Are Your Passions, Hobbies, Passtimes, Dreams and Goals for the Future?
I work full-time as a Network Engineer.
About Me: Please use this space to tell the community about you and your unique experience with transplantation:
Well, I am a 40 years old, male, married to a WONDERFUL wife, and have one 5 year old handsome boy. I love to play with him and teach him how precious life is and to have fun in whatever you do on a daily basis.
My medical history regarding transplantation is as follows:
I was originally diagnosed in 1997 with pseudo-obstruction and malabsorbtion of the small intestine. At that time I was 27 yrs old, 6'4" and ~160lbs. I was very thin to put it mildly. At the time, I was put on TPN (Total Parenteral Nutrition) to assist me in maintaing the weight by adding the nutrition that I was loosing thru my GI tract for the past few years. Once I started the TPN, I gained ~40lbs over the next 4-5 months. I felt way better. Over time since 1997, I had become susceptable to catheter line infections. Probably 1-2 each year until 2005.
So with that said, 2005 came around. I was doing well with the TPN, maintaining my weight and keepin' my blood levels pretty well managed. Then I was told in the early part of 2005 that my liver numbers were starting to become elevated. Along with this I had been having 4-5 line infections over the past 8-10 months. So over the years the line infections had accumulated and my venous access was becoming very limited both short and long-term. So my GI and Transplant doctors were talking that I may be showing high signs for transplant consideration. So by July 2005, my wife and I had done MUCH research on the internet and thru contacts both in and outside the local area. And we had decided that by waiting much longer, I would be in a higher risk for needing a liver and small bowel transplant together. Well I did not like that scenario, so we went ahead and became proactive and had the small bowel transplant only earlier rather than later and to this day, the liver has had very high normalization.
So looking back on whether or not having the transplantation, I would say once again, YES!!! Let's do it.
That's not to say I have not had quite a few setbacks since the transplant, but with those setbacks I and my wife have learned how to deal with setbacks, gain insight, and set new goals, or ways to get better or not to have those same problems re-appear again.
The only major issue I have had post-transplant is AVN (Avascular Necrosis) of the right hip due to Prednisone side effects. The doctors had no real data stating this would happen, but it was a real downer once I was diagnosed with it. I have had a constant, and sometime's severe pain in my right hip down thru my right foot. The orthopaedic surgeon I have states that it will only get worse over time and that, in time, will require a hip replacement. My pain threshold will determine how fast the replacement occurs. I am hoping for many many years from now.
So all told, I would recommend having a small bowel transplant, but note that it will be hard at times, but over the long haul, it is the better thing to do.
Please Help Us Reach Other Members by Telling Us How You Found Transplant Cafe:
If your doc write BS/BS and specifies that you need prograf, not a generic med, they will back down. It's up to a doc to decide. All generic meds aren't the same as the name brand. At MGH they prefer prograf, although they said…"
"Hi Dottie, congratulations on your transplant. I have 10 years on my new liver this month. You have a new organ for only a few years. I would suggest you keep a spreadsheet of your labs as far back as you can so you can notice any…"
"Hi Devra, I am Darlene & had a DLTx 3-3-11. So far no problems with lungs but I have gained 50 lbs since transplant. Finally they lowered prednisone this week to 2 1/2 mg once a day. I have had some kidney damage they are…"
Welcome from me as well. I'm three plus years out...I was on the prograf (as much as 30 mg a day) and others including immuran (as much as 150 a day) and prednisone for the first year or so...I'm now down to simply 1mg x 2…"
So I had my first liver tx in 2005 (living donor) and had bile duct issues. I had a 2nd tx March 16th and have bile duct problems yet again and now I'm faced with needing a 3rd tx. Has anyone out there had 3 transplants? I've been stuck in hospital since March and the doctors want to send me home...even though I still require IV antibiotics and a VACC system. My family and I are quite nervous.
I wanted to help as well, but I am no longer under 18. I do hope though that your project goes well and proves to be informative for you and those to whom you show it. If you do not mind me asking, are you graduating as an undergrad or…"
"Welcome Dottie! I had thought I would have been on more immunosuppressant than I am as I received six organs in my transplant, but I only take 2mg Prograf twice daily without a steroid. I was on the steroid Medrol in the very beginning but the…"
"Hi Dottie - I'm a full, no-living-donor transplantee....I never heard of the bone marrow option....but then again I have heard someone who went to Taiwan for a liver and is on no meds and doing fine after 6 years. Whilst it might be feasible,…"
Well I am shiny and new here but received my tp a couple years ago february 3rd. Anyway I see all these people that tke really low doses of prograf and kinda wonder why mone is so high my doc has me taking 6 mg 2x a day. (shrug)
Well I am new here but have to say I grew up in New England and my love for seafood did not go away post TP. I do eat seafood a lot actually but am EXTREMELY picky about where I eat it and where I buy it. The things that worry me most…"