Kidney/Pancreas transplant

[DialysisGoneFOREVER]

It is good news but still more waiting as the appointment is scheduled for July 12.

They make you wait 3 months for an appointment?? That's a quarter YEAR! That's because of socialized medicine in Canada right?  I got in at the U. of Chicago at Illinois in 3 weeks!

[PrimeTimer]

He's had such a bad run on dialysis this past few months.  We had yet another near death experience on the weekend - that's his third in five months.  The first time he went septic from an undetected infection that dialysis spread he just happened to already be at the hospital.  The second time only by the grace of god I woke up and realized the needle had fallen out during dialysis.  The alarm didn't wake him.  This weekend just out of the blue he had what I can only describe as a seizure, vomited and passed out cold about an hour after dialysis.  I actually called 911 - but while I was on the phone he regained consciousness and wouldn't let them come.

The only upside to this is that he's finally agreed to take my kidney if we're a match.

So sorry to hear this! How very scary! Hope he feels better by now and will let his doctor know what happened. I'd say it was a BP crash if it happened during dialysis but the fact that it happened a whole hour later sounds even scarier. Wonder what that was about. No doubt it's got you on edge but it probably is worrying him, too. I'd convince him to call his Neph about it. I think you did the right thing calling 911. If he had let them come he probably would have been seen fairly quick at the hospital since arriving by ambulance. 

[justagirl2325]

We had our initial meeting with the transplant team in Toronto yesterday.  Everything went well.  The surgeon sees no issues so far.  He has to go back to see the cardiologist August 2 (he wasn't available yesterday, summer holidays likely).

They only take around 30 people in the Kidney/Pancreas transplant program per year so it's pretty exciting that he's one of them.  The way this program works is that if there is a kidney/pancreas available and he's at the top of the Kidney/Pancreas list he would get both organs over someone who has been waiting longer on just the kidney list as they can't just throw the pancreas away and they only do a handful of pancreas only transplants a year.

That being said, as type O he was old bluntly yesterday that if he waits for a deceased donor it would be four to six years (he's been waiting two already so two to four years from this point) and if he has a live donor (me) it would be six months to a year for my kidney and then another two years for the pancreas.  They all recommended live donor kidney followed by the pancreas transplant to get off dialysis asap.

[coravh]

Justagirl, I'm also a PAK (pancreas after kidney). I got my kidney from my cousin in 2002. And while we were only a 1/6 antigen match, I have yet to experience an episode of rejection (Knock on wood). I got my pancreas in '08 and it's also still ticking along fine. This was my thought process at the time. Living on dialysis is kind of like dog years. I was not doing well and figured that the huge improvement of my health thanks to the new kidney would make the panc transplant a lot easier. And it did. I was out of hospital after the pancreas in about a week and recovered much more quickly than I did for the kidney (was in hospital for 3 weeks after the kidney surgery). Obviously, no people are the same. But I found my strength was hugely improved with the new kidney which made the panc surgery much easier (in part because I also knew what to expect from all the post transplant protocols. And statistically (and yes, none of us are statistics, but....) you will probably get more longevity out of the living donor kidney than a cadaveric one. Although the gap is closing now with better knowledge and drugs.

Best of luck!

[PrimeTimer]

Hope this all works out for you and your hubby! He's very lucky to have a wife offering one of her own kidneys to him. That's awesome that you stepped right up like that. This has got to be a good sign! And I think coravh is on to something as far as how the kidney surgery may have afforded the strength to get thru the pancreas surgery. 

[justagirl2325]

Well he's met with both the surgeon and the cardiologist and they've both ordered more tests - a colonoscopy and an angiogram.  Both as a precaution only.  Hopefully they can both be done here and within a reasonable amount of time.

A bit of good news he was able to stop taking blood thinners for his clotting from February.

[justagirl2325]

Well we have encountered our first serious bump in the road.  The angiogram ordered as a precaution discovered a large blockage in his aorta and he will need bypass surgery. 

[PrimeTimer]

  Shocking! I don't mean to sound cold but better that they fix this problem now before he ended up in the ER (or worse) because of it. I've known people who have had bypass surgery and they each said they felt tons better afterwards. I guess the benefits from unclogging things are felt immediately. Hopefully that will lead to him having a better chance for the kidney/pancreas transplant. Meanwhile, hope you are able to take a breather for yourself just to be able to wrap your head around this latest news, you've had a rough summer but you are not alone! This might be one of those times where you need to sit back and have one...

[coravh]

Well we have encountered our first serious bump in the road.  The angiogram ordered as a precaution discovered a large blockage in his aorta and he will need bypass surgery.

My transplant center forced me to get an angiogram, rather than just a stress test (protocol for all diabetics with 25 years experience or more). And it turned out to be the right thing to do. I had 2 blockages stented, which greatly reduced my risks while on the operating table.  I know this is tough, but it will make him stronger for when it is time for the kidney and pancreas surgery. Best of luck to you.

[justagirl2325]

We are home from the hospital.  In all he spent 8 days in there.  Everyone said he recovered well, he was walking more than the average patient (he was 20-30 years younger than the average patient).  It was and still is very painful for him and he has a very high pain tolerance.  But I am glad he is home.  All together in the 8 days there he had 22 hours of dialysis (he normally is 12-16 in a week) so he left with very good numbers.  All except for hemoglobin.  It dropped to 69, its still only at 77 so he's feeling pretty wiped.  They will address that in dialysis tomorrow and hopefully get it back up.

[cassandra]

I'm glad to hear he's home


Love and strength, Cas

[PrimeTimer]

Glad to hear he's off to a good recovery! I imagine because of blood lost during the surgery he will probably be anemic for a while so don't be alarmed if this part is slow going. Hopefully they can boost his EPO or Aranesp and Iron to help with that. And yes, the sooner he moves around the better. Just walking will help build up his strength and get the ole juices moving and healing. Surgeons love that. But I imagine they told him no lifting or driving yet for a while. That part is important as he does not want to risk anything reopening or tearing open. Hopefully once he heals there will be a transplant in his future. Kudos for hanging in there with him! He's very lucky to have you!

[justagirl2325]

Well, we continue to wait at this point.  He's well enough to go back to work and has done so (just no lifting).  One more test next Monday and then he should be done.  I spoke to the other side (the side that was to evaluate me) and they were instructed by the transplant team to hold off on my testing until he's stable and medically cleared which she said will not be likely until the spring....I guess that's better than making me get tested now and again later.  I would just really like to know if I'm a match or not.

[cassandra]

It does sound, and must feel hard, but yes, no point being tested yet.

Love, luck and strength, Cas

[justagirl2325]

He had his follow up with the cardiologist today and everything went well.  She said he should be a good candidate for a transplant anytime now.  Now to get him officially on the list. 

[PrimeTimer]

That is great news! Good luck! Hopefully won't be long now. 

[justagirl2325]

Well he had one more follow up in March and the final one today.  And he's officially listed for Kidney/Pancreas transplant, he signed the papers!

Now to start pushing them to get me tested.

[PrimeTimer]

  Nice to hear good news from Canada! Will keep my fingers crossed!

[smartcookie]

Great news!!  Here's hoping you are a match! 

[justagirl2325]

Test #1 done today.  Just a ton of blood work.  Just using this thread to track my progress   Maybe it will help some other Canadian one day with respect to timelines on OHIP.

[justagirl2325]

Test #2 today, more bloodwork and a 24 hour urine collection test.  Everything looks good on my end.

[MooseMom]

Test #2 today, more bloodwork and a 24 hour urine collection test.  Everything looks good on my end.

That's great news!  Keep up the good work! 

[justagirl2325]

Got this email today "Dr. xxx, the donor doctor, has reviewed all of your preliminary testing. No concerns exist.  We can schedule the remainder of your tests and consults to be completed at our hospital. We are currently booking this next stage of evaluation approximately 6-8 weeks from now."

So far so good.

[cassandra]

Good news girl!!

   

[kickingandscreaming]

Congratulations!