The Pre-Waiting List Blues

[GuyIncognito]

I need to vent today as I just found out I have to wait another month to find out if I am on the active transplant list, now they keep telling me not to worry all my dialysis time will be counted once I am listed but what about all the potential perfect matches I have missed over the past two years?
Heres the skinny: I had a preemptive kidney transplant 4 years ago in Hamilton (my mother was my saviour) however this kidney was lost to a rare baterial infection that 1) they failed to diagnose until it had caused a series of aneurysm's in my right leg and covered the new kidney which resulted in its removal. 2) Upon review it was determined by infectious diseases that the only place I could have contracted this baterial infection was during the transplant itself or during a follow up biosy, needless to say I am angry to this day at the hospital not only for the lack of treatment I received but also the defensive stance they took in regards to my care... In Canada we have healthcare so suing the hospital or doctors only takes away from the care of others, meaning I was never going to sue them.
Now after a battery of tests I was cleared by the hospital and listed on the active list... Which was great I was ready to get back up on the horse and start living again. However the treatment I was receiving, not allowed to see the 4 nephrologists that performed the transplant or the biopsy and a general feeling that the hospital wanted me to disappear made me realize it was time for a change of scenery and 1 month later I moved out east and was able to get into Ottawa hospital and into a Bayshore clinic which I thought was fantastic.
The transplant coordinator / hospital has made me repeat every test I had previously taken without attempting to get the results from ST. Joes and after 1 1/2 I finally completed all the testing they could possibly throw at me, however this is when the meetings started and here we are 2 years after the transfer and I have just been informed that we are now waiting on another meeting.

 I am 27, in great shape, do great dialysis and have been cleared by infectious diseases, Vascular, social worker, Physiologist but for some reason they will not list me and continue to put me off?

IS THERE SOMETHING I AM DOING WRONG.

....Sorry for the grammer and such - I was really angry writing this.)

Topic moved to appropriate section - Bajanne2000\Moderator

[livecam]

If you were in the U.S. we might be able to comment.  Canadian experts please weigh in on this.

[susie q]

No expert here but I did my transplant workup at St Joseph's also.. they are not the most efficient but they tried to book most of the tests.. etc.. for the same day..
I have heard lots of stories about people contracting viruses at that hospital.. kind of scares me but I don't really have the option to move right now.
But.. your seniority on "the list" goes by your dialysis start date..
still waiting... 
Sorry you are getting the runaround Guy.. hope it gets sorted soon.. 

[Panda_9]

I dont even qualify to get on the list. Thankfully mums come forward to give me a kidney, which was supposed to go ahead 4 years ago. Apparently they "didnt have time" to do it. Which Im kind of glad it didnt, as I was very overweight back then.
Sorry I cant help you as Im in Australia, but I can say, the more I hear about healthcare over your way the more I am greatful for what we have here. I guess thats why we have so many immigrants coming here for dialysis and transplants and everything else. The hospital I go to is full of people from overseas, most of who dont bother to learn english.

[angieskidney]

Hopefully Ottawa is better than St. Joe's but I only have experience with Toronto, London and Windsor (but Windsor has no transplant program). I know every hospital is different and I would hate to suggest moving again. Have you talked to the transplant coordinator personally about your concerns? I wouldn't think it would take more than 6 months after all the testing is done. There may be some other reason they are not talking to  you about but only to each other behind your back. Maybe they read about what happened at the other hospital and are worried? Who knows...

[coravh]

Hi. I'm from Ottawa and understand what you are going through. Unfortunately, it would be worse if you had a living donor. I have several friends that had living donors here and they were quite clear in their opinion that the system did everything it could to discourage them from donating. "Are you sure you want to do this? Really sure? How about we make you repeat several tests even though they were normal and then we'll see if you still want to do it?"

The good news is that the surgeons are very good and most of the transplant physicians and nurses are great. I'll let you come to your own conclusions about who you aren't too keen on. Overall it is a good program. The unfortunate thing in most areas though is that you probably wouldn't have gotten a kidney during those 2 years anyway. In this area (and Toronto) the wait for a B kidney is about 12 years. Considerably less for other blood types but still much more than 2 years.

Best of luck to you, and I hope you get actively on the list soon. My advice to you is to be firm and don't  let yourself get pushed around or forced to wait for answers. On the other hand, I understand that it is a fine line and you don't want to annoy (too much) the folks who will  make the active list happen. Take care.

Cora

[angieskidney]

Hi. I'm from Ottawa and understand what you are going through. Unfortunately, it would be worse if you had a living donor. I have several friends that had living donors here and they were quite clear in their opinion that the system did everything it could to discourage them from donating. "Are you sure you want to do this? Really sure? How about we make you repeat several tests even though they were normal and then we'll see if you still want to do it?"

The good news is that the surgeons are very good and most of the transplant physicians and nurses are great. I'll let you come to your own conclusions about who you aren't too keen on. Overall it is a good program. The unfortunate thing in most areas though is that you probably wouldn't have gotten a kidney during those 2 years anyway. In this area (and Toronto) the wait for a B kidney is about 12 years. Considerably less for other blood types but still much more than 2 years.
Cora

Ya for O+ it is at least an 8 year wait (I was told this at the Ottawa Kidney Symposium in 2001). It is amazing the differences between the States and Canada though .. in the States they love live donors but in Canada they don't .. I find it interesting the differences between the countries. Maybe that is why Canada does less transplants than the States... who knows.

[GuyIncognito]

I have to admit that I have been very impressed with Ottawa and it's doctors, especially my nephrologist Dr. Zimmerman the personal touch she gives each and every visit allows me to feel that I am in the best hands and care available. However I do sorely miss Dr. Ingram from St. Joe's he was a fantastic guy who followed me for years and made a point of taking me to lunch and ensuring I was OK after all the unpleasantness that had happened.
 after some cooling down period I can see that my frustration stems from what I can only term as politics rather than a lack of care by the hospital, I am not looking for a Kidney today but rather a confirmation that I am OK and there is a future sans dialysis out there for me... more now than ever with my first little guy on the way.

[coravh]

I have to admit that I have been very impressed with Ottawa and it's doctors, especially my nephrologist Dr. Zimmerman the personal touch she gives each and every visit allows me to feel that I am in the best hands and care available. However I do sorely miss Dr. Ingram from St. Joe's he was a fantastic guy who followed me for years and made a point of taking me to lunch and ensuring I was OK after all the unpleasantness that had happened.
 after some cooling down period I can see that my frustration stems from what I can only term as politics rather than a lack of care by the hospital, I am not looking for a Kidney today but rather a confirmation that I am OK and there is a future sans dialysis out there for me... more now than ever with my first little guy on the way.

Dr Z. is fabulous isn't she? Everyone just loves her. Unfortunately, she doesn't deal with transplants so you will lose her eventually. So enjoy her while you can. As for the transplant docs, Dr Bell is good and most people like Dr Karpinsky too. Most ot the transplant nurses are very caring too.

Cora

[coravh]

  Ya for O+ it is at least an 8 year wait (I was told this at the Ottawa Kidney Symposium in 2001). It is amazing the differences between the States and Canada though .. in the States they love live donors but in Canada they don't .. I find it interesting the differences between the countries. Maybe that is why Canada does less transplants than the States... who knows.

I was thinking about that symposium. I missed it because of ill health. The scarey part is that it was half a decade ago! Too bad that 8 years is probably longer now. Sigh.

Take care.

Cora




EDITED:  Fixed Quote - Goofynina/Moderator