23 year cadaver transplant (currently failing)

[monrein]

I was born in Jamaica in 1953 and at 8 months old was hospitalized with bloody urine.  They (mis)diagnosed me with PKD instead of treating me with antibiotics for what was an infection coupled with reflux (that also was never attended to). They also told Mom and Dad that I (their firstborn) probably had about 6 weeks to live. My parents took me to doctors in Miami and New Orleans where I was rediagnosed with pyelonephritis and the reflux was identified.  I don't remember any of this and I had a very active and not at all overprotected childhood.  I lived on a dairy and sugar cane farm and went to boarding school at age ten.  I was a huge bookworm, studious kind of kid with a very rebellious streak and I was always in trouble at school although I was always in the top of my class academically.  I hated the rules and broke all of them.  My parents eventually moved to Miami after we went through a lot of violence in Jamaica and that is a whole other story as I was the tenth generation on my mother's side born in Jamaica.  I refused to go to Miami for several reasons and my parents also worried that I would have been 15 starting college. Canada had an extra year of high school at that time so my parents agreed to let me come here.  I lived with an aunt and uncle whom I barely knew and went into residence at university when I was 16.  Life was good.  I met my husband at that time and we started living together when I was just 17.  He is 6 years older than I am and was very keen on traveling the world but he did wait for me to catch up a bit.  At 18 I decided to do my third year at a university in France so off we went and that is where I was diagnosed with protein in my urine and warned that I needed to be thoroughly checked out back home in Canada.  I wasn't even a little worried so spent the summer living on beaches in Greece and the former Yugoslavia. I did get checked out medically and was told that I would have kidney failure "later in life". OK I thought I'll deal with that later. We planned a year long trip to India and Asia and my folks thought I was nuts because I turned down a scholarship to do so but I was 20 and confident. We loved traveling all over and learning about different cultures. Then I went on to do a Masters in French Literature and taught English in France for a year. I was enrolled in a Phd program but my Mum got very sick (melanoma) and so we went to help my parents out with their nursery business (plants not kids) until she died four months later.  I lost that school year so took a job teaching French at Acadia University in Nova Scotia.  At the end of my first year there I was exhausted but since I was only 26 I wasn't thinking that later in life was here so soon.  It was and I started hemodialysis with an emergency subclavian catheter.  The surgeon who did that thought I was really nuts since I had him set up a mirror (I think someone had to hold it) so I could watch.
The first time they used my fistula (I watched them do most of that too) I passed out then promptly threw up all over myself.  There weren't  so many people on dialysis in those days and my hospital was very flexible.  I quickly got trained for home hemo since I was returning to Nova Scotia and Ontario also set me up with a machine at our cottage for the summers when we came back here.  I waited five years for a transplant partially because the only people I ever saw on dialysis who had had them were failed transplants and they seemed to be the sickest of the sick.  They also told horror stories about their experiences and I was feeling fairly well except for right after dialysis.  Home hemo went well, really well except for the time my machine started sending out smoke as there was a short in some motor and the wires caught on fire.  Eventually I asked my neph to lend me copies of Transplantation Today magazine and started to think about transplant.  At first I understood only every tenth word in those articles but I kept asking my questions and my neph became my tutor in a way.  At that time Cyclosporine was just being tested and I waited for the trials to be over so that I could get it.  I also learned that Cyclo did best with kidneys that are "fresh" not perfused for any time and I said I only wanted a good match and an unperfused kidney.  I missed the first call because the batteries in my beeper were dead and I was unaware of that (no cell phones in those days).  5 months later I got the next call at midnight and was transplanted at 6 am the following morning.  When they called, the young doctor (we became quite friendly during my hospital stay afterwards as he would spend his breaks sometimes telling me about his new family he hardly ever saw because he was working nights) was a bit confused when I started asking him how "fresh" the kidney was.  He said "we're calling you about a transplant not about a dinner invitation" or something like that but he did tell me that the kidney had never been perfused, just iced so off I went.  My donor was a 17 year old girl from London Ontario who had died suddenly of a brain hemorhrage  and her parents had donated all of her usable organs.  She and they have been in my thoughts for the past 23 years and I wish there had been some way to let them know of my gratitude.   
At that time they wouldn't do live unrelated donation so my husband couldn't give me a kidney.  I am B positive, my sister is AB and my brother is A so my sister was out and my brother was only 16 then.
I was only in hospital for 3 and a half weeks while at that time the average stay was 6 weeks.  I was back at work in 5 weeks and the most amazing feeling was actually wanting to get out of bed in the morning.  I felt as though I had gone from being 80 to 20 in a month and my menstrual period (sorry guys) was  back in two days after a three year absence.  I would have appreciated it waiting until I was a little healed but my kidney started working right away and my body followed cue I guess.  I've been very active since then and started working out at a gym which has been great.
Everything went well for about 22 years and then I had to switch from Cyclosporine to Cellcept but the kidney is now failing,  creatinine rising and I'm feeling 280 years old some days.  I still try to go to the gym but don't do too much, just walking and some weights for brief periods.  Helps to get out of the house though.
So I'm having a new fistula created a week from today and I have 5 living donors who are going to be tested.  My doc wants me to dialyse for around 6 months to clear things out of my system.
I know this is kinda long so I'll stop here.  Thanks for reading.
Gail

[kelliOR]

hello gail,

what a life you've lived!   congratulations on the longevity of your transplant.....
sad news that it is failing....but wonderful that you have 5 people in your life with big hearts!

May you always have love to share, health to spare, and friends that care  !

love,
kelli

[IrishGirl]

Gail,
I am thrilled that a transplant lasted that long. Thats a really REALLY long time, esp for a non living donor who was not related to you, yes? You have been blessed and lucky. Sorry about this setback for you. I really hope your transplant goes as well this time around...you have 6 folks waiting so certainly at least 1 will be a great match for you. I will be thinking about you and praying for the best.
You certainly have lived a very very full life. Sad about you losing your mom when you were so young, thats very hard, I lost my dad very young, he was not there for my wedding, my high school graduation, college graduation, etc. You really miss that. Hang in there on your "tired' days! Its just a frame of mind, thats what I tell myself. Rest when you need it, this takes a toll on you. IrishGirl

[willieandwinnie]

WOW! What a story Gail. I'll be praying and thinking of you for that new kidney soon. Keep posting, I loved reading your story. 

[Sluff]

Hopefully you are a good candidate for another kidney soon. 

[Bajanne]

Thanks for sharing with us.  You are in our caring thoughts and prayers.  HOpe everything goes well.  We are with you all the way.  Please keep us posted.

[Chris]

Now that's a story worth reading. also would have made a great introduction of yourself. Sorry to hear about kidney failing, that is something I fear of my organs doing. Good to hear that you have 5 live donors lined up, but hate to hear that the doc wants you on dialysis for 6 months. Hope dialysis fly's by quick for you, but wwill seem to go by slow when your on it.
Good Luck,
Chris

[stauffenberg]

That nephrologist who thinks you should be dialyzed first rather than have a pre-emptive transplant from one of your potential donors ought to have his license revoked, since pre-emptive transplant is universally regarded as infinitely superior to spending time on dialysis prior to transplant.  Dialysis will replicate at most 10% to 14% of normal renal function, while a transplant can replicate 100% of normal renal function, so the latter option will 'clear out any remaining toxins' much better than dialysis.  The nephrologist has to know better than the advice he is giving you: no doubt he has some ulterior purpose in telling this lie, such as not wanting to admit that the backlog of surgeries scheduled causing no operating theaters to be available for your transplant. You should challenge his opinion.

[Meinuk]

while a transplant can replicate 100% of normal renal function,

Isn't a transplant 50%  (one kidney)

100% would be 2 kidneys

[okarol]

Over the first year the transplanted kidney actually grows bigger in the recipient (and so does the remaining one in the donor) so the kidney function is nearly what it would be with 2 kidneys.

[Meinuk]

That is great information Karol, I've never heard 100% function mentioned with regard to transplants.  Great for the donor as well.

[monrein]

Stauffenberg
Thanks for your input and I will raise the issue with my neph.  I do think however that you are being a bit harsh as to his motives and perhaps I was not clear about his recommendations. I have great faith in him actually, have been with him for 23+ years and have found him to be an upfront honest doc. He has been a terrific advocate for me over the years and has helped me get tests and see specialists quicker than would normally be the case. He said that although some docs would not agree with the idea of a six month dialysis period, and I did'nt have to either, he felt that it might be a good idea to give my body a break from so many meds.  There is also the matter of having my donors tested and some of them are in the US and can't drop everything immediately.  We don't know at this point if ANY are compatible.  My doc felt that he doesn't want me to get sick sick sick hanging on to avoid dialysis.  My numbers and some symptoms aren't horrific yet by any means but I'm beyond exhausted.
I really think that if it were a question of operating rooms, he would tell  me just that.  Perhaps I'm incredibly naive but I do trust him.  He is the head of the transplant unit of the Toronto General Hospital and is much respected in our renal community here.  I would hate to think of him having his license revoked but I could personally refer some docs I know to the licensing board for just such action.
I will ask him more about his recommendations though and perhaps you could let me know of some references for me to further research this.  I'll also do a Google search before "challenging" him.
Thanks again for your input and your response to my post.

[stauffenberg]

If you are in Toronto (as I am now too), I will give you ten-to-one odds that the reason for the six months of dialysis being recommended is a shortage of surgical facilities, surgical nurses, or transplant surgeons for the procedure, so the scheduling has to be delayed.  Healthcare in Canada is pitifully underfunded: I knew someone who had a perfectly matched live donor and still had to wait 8 months for the transplant to be scheduled because of shortages of facilities and transplant teams in Ottawa a few years ago.  The US spends 16% of its gross national product on healthcare to cover only 84% of the population, while Canada tries to get away with spending only 10% of its gross national product on healthcare to cover 100% of the population, and we see the result in the unacceptably long waiting times for everything.

[kidney4traci]

  Gail, what an awesome intro.  I appreciate your honesty and hope you get another match that will give you life without dialysis for many many years to come.

[monrein]

OK then, what's the alternative?  Move to the US? For sure I want to get another transplant and for sure there are problems in our system but let's say for the moment that you are correct and that there is a backlog(we do have longer wait times than people in the US with money) should I go to my neph and tell him he should have his license revoked because our system is clogged. Do you not think that he would like there to be more resources also?  With all due respect, I see a need for political lobbying to improve an imperfect system but I still prefer our system to the US and overall I feel that I receive excellent care here.  I also think that it is extremely important to be assertive in the system and to do what one can when one is healthy (lobby, volunteer with the Kidney Foundation, whatever) but  again supposing that backlog is the issue,  why should I get first in line for that operating room ahead of all the others also waiting??  I mean of course I'm extremely important but in my world view so is everyone else who is  waiting and, as I understand it, many Americans are somewhat disillusioned with that system too.
Final point, may I repeat here that whatever your theory, I DONT YET HAVE A DONOR, so this discussion is rather academic at this point in time.
P.S. 
My fistula surgery occurred two weeks after seeing the vascular surgeon but I was offered a first appointment just four days after our meeting.  I don't consider that unacceptable but I was aware that if a transplant came in that would have priority and my access surgery would have been delayed.

[stauffenberg]

I completely agree with you that the Canadian system is superior in concept to the US system and that the solution is not to abandon the Canadian alternative, but rather, to try to make it better.  Friends of mine who are covered by the public healthcare systems in France or Germany have shorter waiting times for treatments than they have in America, simply because those systems are adequately funded, given that they do not have to overpay their physicians the way the Canadian system has to in order to prevent them from fleeing to the US for higher fees.

I suggested that you challenge the nephrologist's excuse, which was that a period of dialysis is better for clearing toxins than a sooner onset of a transplant.  This is absolutely untrue and the universal consensus of medical opinion is that a pre-emptive transplant to avoid any dialysis time is superior.  However, I did not mean to suggest that you should blame the nephrologist for the failings of the Canadian healthcare system which led him to resort to that excuse.  Obviously the whole system's underfunding is not the nephrologist's fault.  I just don't like it when physicians try to treat their patients like idiots and tell them any lie they feel like in order to simplify things for themselves.

[monrein]

Stauffenberg,  My understanding from my neph was that the period of  dialysis was not about clearing toxins (transplantation is clearly superior for that) but rather about giving my body a rest from some of the medications,  specifically blood pressure meds, of which I take six and most at the highest doses.  When I was on dialysis last time my blood pressure was way better (unlike pre-dialysis or post-transplant).  He has also pulled my Actonel (for osteoporosis) already  and would like me to consult with a neurologist about my epilepsy as we'd like to pull the dilantin I've been taking forever.  The dilantin affects the doses of immunosuppressants because it tends to inhibit absorption (in the case of Cyclosporin anyway). It also has side effects on the gums.  They don't like to mess with removing it with a transplant because of potentially upsetting the balance so this is an opportunity to ditch a long-term med.  I am still of the opinion that my neph is not offering me an excuse for anything and that if it were a waiting time issue he'd say "Gail, I know this should'nt be so but there is a huge backlog etc etc".  I also don't like it, nor do I accept it, when physicians treat their patients like idiots (in fact I don't like it when anyone treats me like an idiot) but that has never been my experience with my neph  and I'm not sure how come you're so sure that he, in particular, is being duplicitous.
I will also point out that my neph did some post-graduate work in the US and could easily have gotten a job and remained there but instead made the choice to return here and pursue a career within our system.  Of course he makes a good living here but would be  far wealthier (in strictly monetary terms) had he remained south of the border.
My passionate responses to your posts stem from the fact that you began with the idea that my neph ought to personally have his license revoked.  I find that an outrageous statement and feel obliged to defend someone whom I, and many others, think is an outstanding doc, albeit practicing within the confines of a less-than-perfect system.
I do agree that some of the European models are enviable but I'm not sure that Canadian doctors are overpaid as such.  Rather, I think that American doctors are so grossly overpaid and research monies so much more attractive there that we lose docs regularly to that system despite the fact that our taxes have heavily subsidized their education for long periods.  All of that is a separate issue.

[stauffenberg]

Of course, I meant only that a nephrologist who thought that it was preferable in general terms for a patient to be on dialysis for a while rather than to have a pre-emptive transplant should have his license revoked, since if he truly believed that he would be so totally uninformed about renal medicine as to be nothing but a charlatan.  If he has other medically valid reasons for recommending the initial period of dialysis, or if he is dealing with delays to surgical scheduling arising from an underfunded healthcare system, then there is no reason to blame him or revoke his license in that case.

[monrein]

So we agree then.  Where's a handshake icon when you need it.  Oh heck, I don't drink but let's get drunk instead.!!!   and here's one for my neph

[kellyt]

Your travels sound fabulous!  I'm so jealous!!!!!

[monrein]

Kelly, at the moment I'm pretty jealous of that girl's life too and I'm a very, in the moment, the present is what counts, kind of girl.  So, I love travel shows on tv or documentaries about other cultures and I just live vicariously through other people.  However, if and when I get a transplant I'm dreaming of a trip to France. I love looking at photos of my friends trips and want all the details.  One couple I know just went to Prague and I'm sure I got a surge of energy looking at their pics.  Truthfully though, the thought of traveling wears me out for right now so I visit here instead.

[kellyt]

I travel via www.Googleearth.com.  If you've never tried it, do.  You can go pretty much anywhere.  Be sure to zoom in real close.'

Also, another cool site is www.streetview.com.  Search for your home address.  It's freaky!!!





EDITED: Added Links - Sluff/Admin

[Sunny]

Hopefully you will soon find a good match from one of your prospective donors.
I'm glad to hear your first donated kidney lasted so long. That is good news for those of us who will need a transplant or have already had a transplant.
Best of luck to you and I hope you are feeling well.

[MIbarra]

Wow! I can't believe your cadaver kidney lasted 23 years! That is awesome. This gives me hope for mine. Everything they've told me and much of what I have read says I should expect it to last between 5-7 years.

Good luck on your new kidney quest. I hope everything works out and soon!

[monrein]

I think regular exercise was helpful and also being careful with my diet.  Obviously some people do everything right and it still fails but I have no regrets because I treated my kidney with as much respect as I could.  Hoping yours will stick around a long time too.