Transplant Evaluation- Why life not on the list
Did you all know that transplant is not an automatic thing that comes with dialysis? Just because you begin dialysis does not mean you are listed onto a transplant list. You must contact your nephrologist for a referral to the transplant hospital in your areas, and then complete testing to see if you are healthy enough to undergo a transplant. Blood work is also done. In addition you must keep up with the yearly transplant work-ups the team wants completed.
I started a transplant evaluation with Kaiser, May 7, 2015.
The last appointment at UCLA Was September 8, 2016.
Kaiser Work up
Referral from nephrologist to Kaiser transplant team.
Transplant Clinic class to be attended.
surgical clearance
cardiac clearance- both Kaiser and UCLA
urology clearance
Pulmonary clearance- both Kaiser and UCLA
dental clearance.
infectious disease doctors clearance
blood work- 18 vials of blood
chest X-ray
tb test
pap smear
mammogram
colonoscopy
Endoscopy
heart test
stress test
abdominal scan
electro-cardiogram
Sleep Study
angiogram
Doppler scan
Pulmonary Lung Function Test
INH and B6 for nine months-TB treatment
Kaiser transplant committee met about my case.
Paperwork sent to UCLA.
UCLA Work Up
UCLA transplant clinic class
Transplant team appointments at UCLA
Loopogram on the urostomy
Genetic blood testing
pulmonary hypertension had to be looked at with another angiogram- heart and pulmonary
Pulmonary clearance with UCLA 3 appointments
Cardiac clearance- 1 appointment
CPAP for three to six months.
Attend class for CPAP machine at Kaiser
echocardiogram again on the heart
Fluid only dialysis treatment to remove fluid each week.
Ventilation/perfusion scan for possible blood clots
Heart bubble test echocardiogram
A repeat high resolution CT-scan of the chest.
Test to see if fistula is causing PH.
CT-scan at UCLA
Lung Scan
Meeting with Transplant Doctors at UCLA
Results:
Transplant case is closed at UCLA.
No transplant for me due to my low BP.
This is the second transplant center that has said no to me or given me all sorts of excuses or things they want me to do before transplant. All of the doctors I saw at UCLA were all for me getting a transplant until my ugly low BP-blood pressure raised its ugly head.
A “sleep study”? What the hell is that? And, what’s this about bubbles? Who got drunk and made THAT up?
I have pics of me on the sleep study. That will be shared eventually. The bubble study was literally shooting bubbles through my heart during a cardiogram of the heart. We actually saw bubbles going through the heart to see if there was a leak in it.
I have never heard of the bubble study… I agree with MooseMom, someone was drunk when that was thought up! Thank you for showing that getting listed for transplants is hard and not something that happens in a day or two. People hear stories like Selena Gomez’s and think you just get an organ willy nilly!