Hello All. I received word last week that my insurance has approved me to proceed with transplant evaluation. I am getting all my medical care through Duke University Medical Center. I received by FedEx today a packet of information with a list of things to do before my first appointment next Thursday the 18th which they said would last all day with many appointments and meetings. My second day of meetings and appointments is on the 23rd just before Christmas. I would be interested in hearing of the experiences of others who have gone through the evaluation process and how that went, different things you learned, etc. I was amazed at how they seem to be covering every area of our body to prepare for the possibility of transplant.
-Tomorrow I have to go to my dentist and have him do an exam and sign paperwork approving that I have no dental issues, infections, etc.
-On Tuesday I have to have a TB test as well as a Bone Density Scan.
-Thankfully they are going to accept my colonoscopy from a few years ago so I will not have to repeat that one.
-I also have had recent ERCP's, Biopsy, etc. which will be accepted as well.
-I had to fill out a complete family history and the different family members medical conditions, diseases, etc. They have left no stone unturned it seems.
I'll keep the group posted as how this goes going forward. I'd appreciate anything you would be willing to share along these lines. Thanks.
Mine was a piece of cake. Lots of paperwork, bone density test, EKG test, Pulmonary test, Arterial Blood Gas test, chest x-ray, MRI. The toughest two things were having 16 vials of blood drawn by a vampire and a chemical stress test. I have had a stress test using a treadmill. The chemical one was tough-feeling all the effects of a heavy exercise while laying down was just not normal.
Plus I got to watch Wimbledon throughout the day between tests.
Yes, I do live in the US. I'm sure the process may vary from hospital to hospital, but at Duke Medical Center in Durham, NC where I am receiving my treatment, my hepatologist had to make a formal written request to my insurance carrier for the transplant evaluation. Once that approval was received, he then referred me to the transplant center at Duke. There will be a series of 2-3 all day appointments for a complete battery of tests done of the various systems of the body to see if your body is fit enough to withstand the transplant surgery. I will be meeting with nurses, doctors, transplant surgeons, financial, etc. etc. It's a big process but again the very first step is getting that approval from insurance to proceed.
After the evaluation, the transplant team will review all the tests and discussions and if they think I am a good candidate for a transplant they will then send all that information back to the insurance company to approve proceeding with transplant listing and eventually surgery. You cannot get listed on the national list until all this is done.
That's it in a nutshell. I'm sure I'll learn more as this moves forward and will post back what I go through to share with all. The best to you and yours this Christmas season.
Mark
Saundi said:
Hi Do you live in the US? How do you go about getting a transplant evaluation if you don't mind me asking...
Thanks Jeff. I'm quite used to getting blood drawn. I've been in the Gilead study for liver scarring over a year now and get mine drawn every month. I don't think I have every had the arterial blood gas test done though. Was that difficult? I assume they have to puncture an artery to do that. I've heard some horror stories about chemical stress tests. I hope they don't make me go through that. Thanks again for sharing your experience.
JeffDC said:
Mark,
Mine was a piece of cake. Lots of paperwork, bone density test, EKG test, Pulmonary test, Arterial Blood Gas test, chest x-ray, MRI. The toughest two things were having 16 vials of blood drawn by a vampire and a chemical stress test. I have had a stress test using a treadmill. The chemical one was tough-feeling all the effects of a heavy exercise while laying down was just not normal.
Plus I got to watch Wimbledon throughout the day between tests.
Did your meld score have anything to do with the evaluation? If your meld is not very high will that mean if you wait years for a doner that you will have to be reevaluated? Not sure when to encourage my husband to get on a list. His meld fluxuates around 12.
Cat, I don't think the meld score figures in. Mine has always been low, and as more time passes since the evaluation, I wonder if it was premature. I do not know if it is a one time only deal, or if it has to be repeated if too much time has passed.
As Mark said, it is initiated by the doc, so who knows.
Jeff
Cat Flower said:
Did your meld score have anything to do with the evaluation? If your meld is not very high will that mean if you wait years for a doner that you will have to be reevaluated? Not sure when to encourage my husband to get on a list. His meld fluxuates around 12.
I was told at Duke that the MELD score is figured in to the decision but it is not always a final deciding factor especially in PSC patients as the bile ducts can fail before the liver actually does thus the need to be moved up on the list. That has been an issue though from what they told me with the national list and they have been in talks about making some provision in liver allocations for PSC patients. Regarding the evaluation, I will ask next week how long that is good for and when or if it must be repeated if too much time passes.
I have been through three transplant eval's (none at Duke) and what you're experiencing is par for the course. Drink plenty of fluid before you go (unless you're NPO for some test). They drew 21 tubes of blood from me on that first eval. and they will want a urine specimen. If they give you an option on the cardiac stress test, opt for a Dobutamine stress test rather than the treadmill. You'll be exhausted otherwise. Pay close attention to the diabetes lecture - chances are you will develop Diabetes at least for a while after transplantation. After all the tests are over (and consults regarding test abnormalities) be ready to wait, and wait. Learn all you can about your MELD score, because it determines your position on the waiting list. Be prepared for "dry runs" for your first few calls for transplants. The acquired livers may not be healthy, or you may be a back up, or the stars may not be aligned, etc.. If you are getting sicker rapidly (to hedge your bets) and if your insurance is co-operating, get on the list at another medical center outside your home region (only one listing per region). You need to be able to get there when called in less than six hours. Make sure someone (preferably your caretaker) with a good memory is with you through the eval. because a lot will be thrown at you.
Stay Strong! - the weakness after transplantation can be very problematic. Walk as soon as they will let you.
Your observations and comments are most appreciated. How long have you been post-transplant and are you doing well? I guess one of the biggest questions I have for the transplant people is about the anti-rejection meds. Have they made a huge impact on how you live day by day. Like when you go into a doctors office do you fear getting an infection from the germs in the waiting room, etc., and did you have to take extra precautions being generally out in public dealing with this? I understand these medications really do a number on your immune system. Thanks!
I am 15 mo. after transplant. I am 67 yrs old and have some other problems (chronic lymphocytic leukemia stage 0 and some heart problems). These problems contributed to a rocky first six months including infection and necrosis of the common duct. Thus both my new liver and kidneys were damaged. None the less, I now feel much better than before the transplant and I am productive and glad I had the transplant. However, I am on the list for a combined liver/kidney transplant.
Regarding the anti-rejection drugs, I am more careful with clean hands than I used to be. I do carry alcohol hand sanitizer wherever I go. My main complaint about the drugs is that I have developed numerous warts that are difficult to get rid of. I don't wear a mask in public unless someone has a cold or if I'm in a primary care Dr's office. It's interesting that recently my wife developed a severe cold but all I had was a runny nose for a few days. Please note that some of the generics for Prograft are poorly formulated.
Hi Mark, hope your meetings went well in December. Al the best with the evaluations. Look forward to hearing from you with respect to how things went. Best wishes, Priya
Just wanted to give you an update on where things now stand after my transplant evaluation.
Every Tuesday the transplant team of about 25 doctors, surgeons, coordinators and other staff meet to discuss patient cases. I received a call this evening from the transplant coordinator at Duke, and she reported that they believe I am a good candidate for a transplant and have agreed to recommend me for the transplant list. They will now make a formal request and presentation of all tests, data, etc. to my insurance company. Once the insurance is approved, I will be listed on the national transplant list.
So that is good news for us! We would appreciate everyone's prayers as we wait for the approval from insurance and then finally the listing on the national list.
Just wanted to give you an update on where things now stand after my transplant evaluation.
Every Tuesday the transplant team of about 25 doctors, surgeons, coordinators and other staff meet to discuss patient cases. I received a call this evening from the transplant coordinator at Duke, and she reported that they believe I am a good candidate for a transplant and have agreed to recommend me for the transplant list. They will now make a formal request and presentation of all tests, data, etc. to my insurance company. Once the insurance is approved, I will be listed on the national transplant list.
So that is good news for us! We would appreciate everyone's prayers as we wait for the approval from insurance and then finally the listing on the national list.