I Hate Jumping Through Hoops Rant

[kitkatz]

OKay I am going to rant here.  Please let me get it out and then tell me to shut up if you want to.

I am so sick of hearing about transplant that happens to other people that happen over night. I know it does not work like that. Let's stop with the fru fru stories and tell it like it is. It takes years to get on the list and years to get a kidney.  Man, oh man, one more good story and I am going to throw up all over everyone, everywhere.  He got a kidney from someone, it only took a year. Puhhleease! It never tells the back story of the drama that put them there in the first place!  And besides if you are not compliant enough while on dialysis they can kick you off the list anytime they want to. Does anyone talk about that? No, the news stories are always "they gave a kidney, how great"!  I speak as someone who was refused from the transplant list because I was 20 pounds overweight in 2004. Now they want more tests.  I am so tired of the hoops I have to jump through just to get on the transplant list.  I hope to God I make it this time.  I hate this waiting. It mnake me mad and angry and I feel hopeless sometimes.  I was in better health and shape in 2004 than I am in now.  And they want more tests now.  I swear every day over it.  Lord, please help me!

Those of you who made it good luck to you and God bless you! I envy you your new kidney!

[okarol]

Hey Ms. Kitkatz --
I agree - it takes a great deal of perseverance to get listed. Even Jenna, who was 18 years old at the time of beginning dialysis, had no other health problems,
no antibody issue, no hypertension or other issues, took months to get listed. So someone who has to get "perfect" before being listed definitely has many hoops to jump through.
The stories you often hear about are not because this list works. It is because people find living donors to help them. The waitlist, in my opinion, is a "wastelist." A lot of people
waiting are not going to make it to transplant. I know there are those who will disagree with me, thinking that it's better to wait for deceased donors, rather than put another human at
risk to donate to them. But hospitals are more willing to help get you evaluated if they know you have a willing living donor. Getting multiple listed is also a good idea, if you can do it.
In Los Angeles you have to go to San Diego or Sacramento (or even Phoenix if you can get those low cost Southwest Airlines fares) but it will improve your chances on the list.
I hope you get more support from your transplant team, and the path will become clear.
~K

[libran925]

Yes, yes, yes, ditto, ditto, ditto! I was yanked from the local transplant list because a social worker believed that I would not comply to the rules and requirements. My nephrologist wrote a letter on my behalf stating that I was a very compliant patient who followed all rules, took all meds, showed up for all appointments. Nada. The response was that I should be kept on dialysis a minimum of six months, which time would not count on the transplant list. I was FURIOUS. This was the first event that molded my present-day opinion of the medical establishment. That was in 1994 and many more events have contributed to my absolute distrust of medical personnel, especially doctors.

Eventually, I did get a kidney transplant. No, it didn't happen overnight though my wait was under two years. The kidney only lasted six years, then back on dialysis. Now my attitude is, "I'll follow the rules I feel like following." I'm not interested in another transplants, don't want to take those meds again, don't ever want to be an overnight guest in a hospital again dealing with short-staffed nursing units, etc. etc. So now that I don't have to watch my compliance, I DON'T CARE!! I'M FREE. Well, to a certain extent being as I am on dialysis...

[livecam]

I started dialysis in January of 1999 and was on the list that August at the age of 44.  At the time I felt that it had taken forever just to get listed.  Please don't despair about the tests and meetings etc.  It is all just part of the process and although it is a pain it is all worth it in the end.  As far as compliance is concerned do everything you can to tow their line.  They are looking at your labs as well as transplant center bloodwork constantly and if they sense that you are being a good patient things will go better.  Remember that a quick transplant is a roll of the dice in alot of ways.  Once you are on the list if that perfectly matched kidney becomes available you will get a call even if it is the day after you get listed.  Also remember other strategies for a faster transplant like getting listed in more than one location.  I know that you are a Kaiser member so your transplant coordinator can explain to you how that is done.  Let your transplant team know that you are determined to be listed and will do whatever is expected of you both before and after that.  Once you are listed treat your body very carefully and be ready for a possible transplant at all times.  Try not to get sick and if you plan to be away have a plan to get back to the transplant center quickly if they need you to come.  Getting listed and getting a transplant isn't magic or voodoo or any of that stuff.  People get them every day and so will you. 

[goofynina]

I have a question,  not sure if anyone can answer it but i am going to ask it anyways, ready? here it goes...What if someone has a donor, the blood tests have been taking, the donor has gone to San Francisco and taken his second series of tests,  YOUR A MATCH, BUT, you (meaning me)   have a rediculous amount of weight to lose.  (second part of the question)  Let's say by some miracle, i was able to lose this rediculous amount of weight and i was ready to get have my transplant, but have not been on the list, will they still do the transplant??  This whole things confused the shit, oops, i mean caca out of me    

[Sara]

I think that if you have a donor, you don't ever have to be on the list.

[okarol]

The list is so that you will be considered for a non-living matching kidney when it becomes available.
If you want to get a transplant you still have to be evaluated to be sure it will be successful, but there's
no reason to get listed if you provide a living donor that passes their own evaluation process. Many people
get pre-emptive transplants so they can avoid starting dialysis. Medicare will pay for your transplant if you
have already been on dialysis, but if it's pre-emptive then you would have your own health insurance
covering the cost.

[paris]

At my center, I had to go thru all the tests (months worth) and be completely evaluated and put on the transplant list before they would start the living donor testing. No use having a living donor, if I wasn't completely able to accept the kidney (cancer, heart etc.)  I had several people who had completed the paperwork while I was going thru the testing, just waiting for the magic moment I got on the list. Three are a  match -- now if I could only get rid of my PRA of 100%!!!!!

[coravh]

I have a question,  not sure if anyone can answer it but i am going to ask it anyways, ready? here it goes...What if someone has a donor, the blood tests have been taking, the donor has gone to San Francisco and taken his second series of tests,  YOUR A MATCH, BUT, you (meaning me)   have a rediculous amount of weight to lose.  (second part of the question)  Let's say by some miracle, i was able to lose this rediculous amount of weight and i was ready to get have my transplant, but have not been on the list, will they still do the transplant??  This whole things confused the shit, oops, i mean caca out of me    

At most transplant centers, the wait list has nothing to do with people who have a living donor. In a lot of cases, they like to do the transplant before you go on dialysis (pre-emptive transplant).

I wish you the best in losing the weight. I know you can do it. Believe me, it is possible. My donor lost a lot of weight before she gave me the kidney and now we are both great. Just think, if you lose the weight now, you will be all set with a healthier lifestyle for once you get the kidney.

Cora

[Black]

...  have a ridiculous amount of weight to lose....

Have you ever had a complete hormone profile done?  Have you had one lately?  Blood and saliva levels checked?  Inability to lose weight on a healthy diet is often an undiagnosed hormone problem.  If your doc does not run a complete hormone profile, then a problem could be easily missed and no amount of diet and exercise modification can overcome a hormone imbalance.

You may have to do quite a bit of searching before you find a doc who will do a complete hormone profile -- blood and saliva, and unless the doc you find uses diagnosis codes your insurance company will accept, you may have to pay for it all out of pocket.  More of that "jumping through hoops" kat mentioned.

[kitkatz]

I know with me they have to list you before they will even consider looking at a live donor. Check withy our center.  There have been transplants done on some very obese people and they have had very good results.  That is what I have heard. (Do NOT quote me to the medical establishment!) 

[BigSky]

At my center, I had to go thru all the tests (months worth) and be completely evaluated and put on the transplant list before they would start the living donor testing. No use having a living donor, if I wasn't completely able to accept the kidney (cancer, heart etc.)  I had several people who had completed the paperwork while I was going thru the testing, just waiting for the magic moment I got on the list. Three are a  match -- now if I could only get rid of my PRA of 100%!!!!!

If you have a living donor you should be able to undergo plasmapheresis and immunoglobulin (IVIG)  treatment to reduce your PRA levels.

[Treasure]

Ah, jumping through transplant-approval hoops should be an event at the Transplant Games   

I was very frustrated during the 1.5 years leading up to my transplant. I was placed on the list when I started dialysis. However, I had at least two sons who were willing to donate to me, so we started the transplant workup.

I had discussed getting  a living donor transplant with my nephrologist many times of the years he treated me. He did not mention that I needed to lose weight until after we had started the process. Thankfully, I was already working on that... but it still made me angry that the doc waited until we started the workup to mention this.  I was so angry, in fact, that I looked into transplant centers that do transplant on heavier patients. I visited Swedish Medical Center in Seattle with this in mind, but ultimately decided to go with UCSF after they compromised on my weight goal.

Another frustration was that the transplant team didn't tell me all the test I needed to have done-- up front. I'm the kind of person that will schedule all my test for a short period of time and get them all knocked out at once-- especially if I'm going to have to take time off from work to get the testing done. Because of the piecemeal way they let me (and my two potentional donors) know about tests, this part of the process dragged out. So much time had transpired, that I ended up having to repeat some of the tests-- and that was frickin' expensive!

I understand the importance of weight loss and the tests-- but I think things would have gone smoother if I had been more completely briefed about the process in the beginning. I suggested that the department create a checklist that can be updated as needed...

I was singularly-focused on getting a transplant and that helped me jump the hoops. I got my transplant, even if it was short-lived...and now I know how things work, so I will be better prepared next time


Michelle  ~  Treasure

[Sluff]

Treasure, your a treasure. Thanks for sharing your experience so others may benefit and learn to ask the right questions.

Did you get your chilled grapes yet...

[Treasure]

Treasure, your a treasure. Thanks for sharing your experience so others may benefit and learn to ask the right questions.

Did you get your chilled grapes yet...

How yummy! The grapes, I mean. And they fit right in with my gotta-get-another-transplant-after-losing-weight-again diet! hehehe...

Treasure...