Transplant evaluation

[AaishaDar]

So I finally got the guts and filled out my transplant evalutaion form and have an appointment next month. What should i expect? Are there a bunch of tests? How long am i on the list for if im 21?  Im nervous and hate needles since Ive gotten much weaker. The lady on the ohone said tge appointments are long 8:30 to 1:30... man thats a long day! Id appreciate if any if you guys could give me details on what happens and what to expect.

[Tora66]

The appointments are long, but just think how happy you're be to go something to eat afterwards because you'll be so hungry. Just completed my yearly assessment two weeks ago. Everything went well.

[iolaire]

At GW there was a group class to start and then you meet with the various councilors like financial, diet, social etc. and a tech draws about 10-20 bikes of blood. Later someone calls you to setup the various tests like stress test, ultrasounds, X-rays and the like. At GW the tests were spread across a few days, even though I only had a few to do because I was transferring my time.

At INOVA were I was listed there was no group class, there was meetings with the councilors and lab work draw. Then later the scheduled the tests like ultrasound etc, but there they blocked it out nicely so I got everything done in maybe two visits of say four hours each.  I think if I did the full testing at GW it would have taken more visits.

In advance of the financial councilor meeting think about how you will have immunosuppressant drug coverage after Medicare drops you. That's a big concern to them because they want to insure you will not loose the kidney because of difficulties paying for the drugs.

[AaishaDar]

I plan on going to the Georgetown Medstar Hospital. Since its far from my place they scheduled my evaluation somewhere in Arlington. The surgery will take place at georgetown.
Few questions: whats a stress test? Why would medicare drop me? If I dont have medicare how do they expect me to pay for my meds?! Estimate this will take a few weeks to fibally get on the list?

[Simon Dog]

1. A stress test is an EKG done while you are gerbilling (running on a treadmill) to measure the cardiac response to physical stress.  A fancy form is done with a radioactive tracer and a post stress scan of cardiac muscle perfusion.

2. I believe you get Medicare for 3 years post transplant, after that, funding the meds is your problem.

3. Don't worry about the weeks to get on the list, your waitlist time starts first day of dialysis

4. At you age, you qualify for choice meat.  Us older folks get lower grade cuts.

[GA_DAWG]

They do an EKG, blood testing to help determine matches as there is more to it than blood type, meeting with counselors and drug advisers, a mini physical and a few other procedures. All together it takes the better part of a day.

[LoneHighway]

It took 4 months from the time of the group class until I was officially listed, but I've been stuck in "status 7" for more than a year due to various issues, mostly "poor social support," but now ongoing medical complications.

[Whamo]

I'm near the end of the process to get on the list.  We had a couple of days of classes, blood tests, and my last hurdle is the stress test. 
The financial stress scares me, but I'm a lot better off than most people.  I don't see how the average person can afford the meds.  I have Medicare and Risk Management, so I'm good as
long as my wife continues to work as a nurse manager.  And I'm trying to build my stock portfolio just in case the expenses fall on me.  I'm feeling pretty good these days thanks to Dr.
Gundry's supplements.  My wife used to work with him in the cardiac ward.    Love to all, especially God, and my wife, for this gift of life.  I'm almost 65 and grateful
for all the experiences I've had: 35 years of surfing, sex, drugs, rock, drink, friends, working as a hamburger flipper, Army infantry soldier, newsletter editor, real estate salesman, broker, writer, administrator for a real estate
school, teaching high school English for 15 years, and eleven years in a wonderful marriage.  Thanks, God, for a great kidney center that cares about me.      Hopefully
I can get a kidney so I can return to writing full time, finish my Captain Cook project, and enjoy eight hours of sleep again.

[MooseMom]

Aw, don't worry about the appointment, OK?  Many hospitals that have transplant programs have a website where you can read about their pre-transplant appointments.

Try to see it as a really good opportunity to talk about your hopes and concerns.  It is a change for you to get information and to decide if "a transplant is right for you". 

This may sound odd, but I really enjoyed my evaluation appointment!  I met a lot of really nice people who enjoyed the opportunity to help someone who needed a transplant. 

The appointment takes a long time because there are a lot of people to talk to...the pre-tx coordinator, the lab guys, the surgeon, the social worker and a dietician.  Not all of them are available immediately, so you may spend some time waiting for, say, the surgeon to be free.

There is no one who says you will have to have a tx if you don't want to.

Please be sure to let us know how your appointment goes!  I'm excited for you!

[GA_DAWG]

I forgot, they also tell you about getting dental clearance and in my state at least, they tell you the amount you must fundraise to get onto the list, if any.

[AaishaDar]

Fundraise? For what?

[Simon Dog]

Fundraise? For what?

Transplant centers want to make sure you can afford the lifetime medications you will need to keep the kidney from being killed by your immune system.   This is known as the wallet biopsy - an essential part of the transplant process.

[AaishaDar]

I learned that Medicare will eventually drop me after I get a transplant... how stressful is that?!! Like my parents already pay for bills and such and I dont have any source of income. There has to be some other way to pay for meds... why go through all this trouble to get a kidney in the first place when I might be at risk of losing it :/

[kickingandscreaming]

why go through all this trouble to get a kidney in the first place when I might be at risk of losing it :/

Good question.  The system needs to change.  Otherwise, transplant and its ensuing survival value are limited to the elite who can afford it.

[GA_DAWG]

Pretty stupid for Medicare to pay for a transplant and then not cover the meds needed to keep it from failing, but, that is our government. The fundraising is not usually an exorbitant amount and the state transplant foundations will usually work to help you with it.

[Simon Dog]

Pretty stupid for Medicare to pay for a transplant and then not cover the meds needed to keep it from failing

Especially when you consider that maintaining an xplant patient is cheaper than dialysis, provided the transplant survives a few years.

[smartcookie]

The idea behind losing the Medicare so many months after transplant is that you are no longer considered disabled and should be able to find job that can help pay for the medicines.  Unfortunately, that does not take into account young people just starting out who may not get a job with benefits or who want to go to school.  Could your parents put you under their insurance?  That could be a loophole for a bit and is worth looking into. I think you can be covered under their insurance until 26.

[AaishaDar]

So will be doing all of my tests the dsy of my evaluation? I got a letter today with information about my appointment which is at 9am. Then it says after appointment chest x ray so all of my tests will be done tge same day?

[LoneHighway]

Usually not. There's a stress test for one thing, that's usually done at a different appointment. I had an MRI of my abdomen on another day, etc.

[smartcookie]

They usually give you a timeline to get all your appointments scheduled.  You will need to visit the OB/GYN, get your teeth cleaned, go for some cardiac testing, etc.  If you don't have a particular doctor, you can ask your social worker or nephrologist for recommendations.  You go this!   

[GA_DAWG]

There is usually a stress test, a lung function test, a colon check, dental clearance and a few others done over several weeks. The eval, for me, was EKG, stress test, lots of blood work- I think it was over 20 vials, meeting with fundraising people, meeting with counselors. It was about a seven hour day.

[LorinnPKD]

Wow, seeing different requirements!   And they depend on the transplant center and on your general medical profile.

In Colorado at the university hospital, I started with vitals, met with a nurse-coordinator/surgeon/neph/finance/socialworker, gave a family history, did a physical exam with a neph, and gave them 14 vials of blood -- that's all standard there.  Based on those inputs, they sent me a list of extra tests to do afterward.  In my case, I just had to get an EKG, my annual women's exam, and a mammogram since I'm over 40.

Everyone at my program was really helpful, smart, and positive.  Try to bring someone with you to the session if you can -- it's a lot of information.

In my state, I believe someone your age would get fast-tracked for the best matches.

Wishing you good luck!

[LoneHighway]

At least you won't have to have a colonoscopy since you're so young. 

[AaishaDar]

I hear women have to get a cervical testing... thats really makes me nervous:(

[kitkatz]

Did you all know that transplant is not an automatic thing that come 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.
My own work ups included:
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
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

These took almost a year for me to do all of them and get okayed by the specialists.
Meeting with Transplant Doctors at UCLA
Results:
Transplant case is closed at UCLA.
No transplant for me due to my low BP.