I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: justagirl2325 on June 30, 2015, 12:59:51 PM
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Anyone here the recipient of a Kidney/Pancreas transplant?
We are going to meet the Transplant coordinator next week finally :cheer: and our home-hemo nurse is encouraging him to get on this list. He should qualify as he has terrible Type 1 diabetes and the wait list is substantially shorter 2-3 years vs. 5-10 years for kidney here.
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So I'm guessing no one is.
He has decided to go for it and get listed for "Simultaneous Kidney Pancreas" transplant, or SKP for short. At December 31, 2013 there were 105 people on the SKP wait list, and 44 were transplanted that year. Compare that to 3,277 on the kidney alone wait list with only 705 transplanted.
I must admit I was a bit upset as we were told he could do a kidney transplant with a live donor (like me if I was a match) and then stay on list for pancreas transplant later. But he's not willing to go there. So we wait and hope the road to his SKP won't be too long. When they put him on the list they backdate it to the day he started dialysis which is a year tomorrow.
Had a stress test this afternoon. I'm not sure of all the tests that will be required. The hospital said they would mail us a booklet and start scheduling tests. When the call comes we will have to travel to Toronto (they arrange that as time is of the essence) then we are on our own. We would have to stay in the area until medically cleared (4-8 weeks). She said to have fund at the ready of anywhere from $2 to $10K dollars to cover expenses.
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It might be that no one responded yet because it seems like quite a few transplant recipients only pop in once in a while after transplant. I think it usually just means they're too busy living normal lives again. :2thumbsup;
I hope you don't have to wait too long! It sounds like your wait will be fairly short since you need both.
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I know of only one IHD member who has had a kidney/pancreas tx, and I haven't seen him post here for a long while.
I hope you didn't feel ignored. I would have replied, but I've had only a renal tx, so I don't think I have much to offer you.
I don't blame him for wanting to get it "all done at once". It's major surgery, and to have to go there twice is a big ask.
Best of luck to you both! Please keep us posted on his testing/results!
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Thought I would give a response according to what we were told at Emory (GA) Hospital. My wife was hoping for the combination kidney and pancreas since she is a very long time Type 1 diabetic. The transplant surgeon basically told us that the combination surgery was extremely complex and they had backed off doing as many as they had done in the past. The pancreas is a much more delicate organ than the kidney and its long term success rate in transplant is not as good as a kidney only. The pancreas will typically fail before the kidney does over the long term. Kidney only surgery is not near as complex and the kidney is a much tougher organ. What makes the pancreas part of the surgery complex is the location of the pancreas and rework of the ducts into the stomach and intestines. The surgery is much longer and recovery is also significantly longer and more complex with the medical folks monitoring two organs. He said that this surgery is usually for those who are very brittle diabetic and cannot control their blood sugar levels regardless of what they do. Although he did not say it directly he also insinuated that it was people who are younger and can withstand the tougher surgery. My wife is 61 and a type 1 for 49 years. However, she is on the Minimed Medtronics insulin pump and is well under blood sugar control. I will add that friend introduced us to a person who was poorly controlled with his BS and he had the combination surgery. He feels it was the greatest thing he has ever done. He is about 4 years in now still going strong running his car wash and other businesses. He was 52 when he had his surgery. His waiting time was short at about six months.
Our story is on the kidney only waiting list for about 6 months and I am being tested for the living donor program and half way through that process.
My thoughts are to ask all the questions of the medical people and come to your own conclusions on what is best for you.
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Interesting, thanks for the info.
We are moving along here with an echocardiogram scheduled for August 2 and some ultrasounds on September 29 (speed of light with universal health care).
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So he has a couple more tests scheduled for next week (Sept 29 and 30) and from what I can gleam with the little information they have given us, I think that's all the testing. Will have to push them after that to get him on the list officially I guess.
Meanwhile, I went to a private clinic and had my health and kidneys checked (just in case he gets tired of waiting for kidney/pancreas transplant). My kidneys are perfect and ready to go lol. I don't know if I'm a match though.
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So he has a couple more tests scheduled for next week (Sept 29 and 30) and from what I can gleam with the little information they have given us, I think that's all the testing. Will have to push them after that to get him on the list officially I guess.
Meanwhile, I went to a private clinic and had my health and kidneys checked (just in case he gets tired of waiting for kidney/pancreas transplant). My kidneys are perfect and ready to go lol. I don't know if I'm a match though.
A thousand apologies! I didn't see this post over the summer. I am what they call a PAK (pancreas after kidney). I got my kidney from my wonderful cousin in 2002, and my pancreas in '08. There were other reasons for the delay. Obviously, my first priority was to get off dialysis. I am still doing quite well - kidney ticking along and blood sugars normal, no matter what I eat. I actually found the later pancreas transplant easier than the kidney. If you have any questions, just fire them at me. Best of luck to you two.
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After the September tests were done we waited for further instructions. He had to go to the clinic at hospital for dialysis (has one session there every two months for labs to see how home-hemo is working).
His nurse contacted the coordinator only to be told that at September 30 all the tests have been done but no one has reviewed the results yet. Yeah free health care in Canada. :banghead;
So now we will call weekly with a "have you checked yet" chant.
On a separate note, a locum doc was in for this clinic and asked him if he had a kidney donor, he pointed at me and said "she's willing to donate" but he quickly explained I wasn't tested for a match as he was trying for the PAK. The doc told him straight out if you have a willing donor take the kidney now and be listed for a pancreas transplant later. That years of dialysis waiting for both organs (when you have a willing donor) is not worth the stress dialysis puts on your body.
He wasn't even willing to discuss that with me. :banghead;
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Sorry you're having such a stressful day. I'd be aggravated, too. Now is the time to be kind to yourself, whether it is treating yourself to a favorite treat, book, nap or alone time just do it and let go for a little while, if not a day. Focus on feeling every muscle in your body relax, beginning with your toes and go up from there. Chores and whatnot can wait, even when it seems they can't. Either way, break the anxiety by picturing other things in your head.
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I'm not really sure when, how, or why he changed his mind but he has agreed that the hospital can test me to see if I'm a match for him. Perhaps it was the nine day near death stint in the hospital from the infected chest catheter. Perhaps it was the fact that he was walking around with blood clots from the catheter unknowingly that put his life at risk. It doesn't matter.
Here in Canada I could not find out if I'm a match for him without him giving the ok to check.
So I will pass on my application to be a donor on Monday and see where it goes. All I know so far is I have no antibodies, we're the same blood type (O positive) and my GFR is 112.
He is still not officially listed but that should be soon.
He is still holding out hope for the simultaneous kidney/pancreas transplant but at least we will know our options.
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Good luck to the both of you
:cuddle;
Love, Cas
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I have had a skp (simultaneous kidney and pancreas) transplant for over 15 years now. At times it has been a rocky road, but still better than dialysis and hypoglycemia unawareness.
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I have had a skp (simultaneous kidney and pancreas) transplant for over 15 years now. At times it has been a rocky road, but still better than dialysis and hypoglycemia unawareness.
This is awesome to read! This will certainly bring hope to those awaiting the same transplant. Congratulations to YOU and your 15 years!
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There are people who have had it longer than me without another transplant.
It may not always be an easy road, but worth it for most people.
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There are people who have had it longer than me without another transplant.
It may not always be an easy road, but worth it for most people.
Wondering if you or anyone for that matter can answer this: When someone needs both a kidney AND a pancreas transplant, are they listed that way (for a double transplant) and must both organs become available to a recipient simultaneously together? Please forgive my ignorance on the subject.
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I went back and reread the previous posts and now realize they more or less answered my questions. Oops...sorry.... :Kit n Stik;
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Here we are in April 2016 and he's still not officially listed on the transplant list. He finally lost it at his last clinic appointment and the doctor in charge told the transplant co-ordinator to get moving already. Apparently she left work crying that day...sorry her life is hard and I can appreciate that she's busy but then don't tell us in January that we should hear something from Toronto in three weeks only for us to find out in April she hasn't sent it to them yet.
She called me and I had an appointment Friday and they took the first required blood samples from me to check me. I know I'm healthy and I know we're the same blood type but he still hasn't said "yes I'll take your kidney" just yes to check if its possible.
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Pleased to hear your hubby finally got angry (at the right people) about still not being listed because of some paid person who ....#####....
Very sad to hear that he still not is listed too. I really hate people doing jobs they just shouldn't. The misery they cause....
The second part about why your hubby hasn't jumped on your offer yet? Maybe it's so incredibly difficult for him to have someone he loves going through pain and uncertainty for him makes him scared? Scared of you having to go through pain? Scared that it might not work? Maybe thinking that he's not worth it? It's so difficult.
I thought all that when my hubby offered many years ago. I agreed to let him go for a blood test as he didn't know what blood type he was (healthy people, the luxury of that innocents.....) and TTL we were incompatible. So now I'm 100% APR so I'm waiting for that 1 in a gazillion chance o a cadaver kidney. That's okay. I'm old enough now. Never give up hope, and neither has your hubby.
Lots of love, luck and strength, Cas
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Went home from work last night and there's a message on the machine from the K/P transplant team in Toronto wanting to schedule an appointment with him. Finally!
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Went home from work last night and there's a message on the machine from the K/P transplant team in Toronto wanting to schedule an appointment with him. Finally!
That is GREAT news! Thanks for sharing!
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Went home from work last night and there's a message on the machine from the K/P transplant team in Toronto wanting to schedule an appointment with him. Finally!
Congrats, great news
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It is good news but still more waiting as the appointment is scheduled for July 12.
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It is good news but still more waiting as the appointment is scheduled for July 12.
Sorry I do not check in as often as I use to. I check in Facebook more than I do here, which is a big reverse of doing when there was a post about Facebook in here about 7 years ago.
Good news is that you hav an appointment, bad news is a long wait to get ball really rolling. Test will probably need to be repeated such as the stress test to be more current for them. More test maybe neded along with blood test on a routine basis. My advise is to take lots of notes, use a voice recorder to help with notes and be on top of things by being pushy when you fel the need. Proactive is better than reactive to some degree, this maybe a bumpy ride.
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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.
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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!
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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.
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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.
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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! :2thumbsup;
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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.
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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.
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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.
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:( 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... :wine;
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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.
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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.
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I'm glad to hear he's home
Love and strength, Cas
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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!
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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.
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It does sound, and must feel hard, but yes, no point being tested yet.
Love, luck and strength, Cas
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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.
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That is great news! Good luck! Hopefully won't be long now. :beer1;
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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.
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:canadaflag; Nice to hear good news from Canada! Will keep my fingers crossed!
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Great news!! Here's hoping you are a match!
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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.
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Test #2 today, more bloodwork and a 24 hour urine collection test. Everything looks good on my end.
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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! :2thumbsup;
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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.
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Good news girl!!
:2thumbsup;
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Congratulations!
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YAY!!! I hope everything turns out great! :pray;
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Awesome!
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Thanks everyone, they said 6-8 weeks but got me in much earlier. I go June 12 now. Tissue typing, more blood work, chest x-ray, CT scan, donor education, and social work.
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Yes!! Keep us updated! I know you are ready to be off that stupid machine!
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This is wonderful news. I hope the long wait is over soon.
:2thumbsup;
Aleta
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June 12 is just around the corner.....chin up!
:bandance;
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I had my apt yesterday and the worst part was the CT scan. They injected me with a dye that helped the machine see all of my blood vessels. It was an horrible experience. Glad it only lasted about half hour and that I am done my medical testing. So as long as they don't find anything wrong with me (which they won't) and as long as our blood doesn't fight each other on the cross matching test (which they better not :police:) I go back to Toronto again in 3-4 weeks to meet with their nephrologist as the final step in the donor process. Then we pick a date.
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Yes!!!! :yahoo; :yahoo; :yahoo;
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Well done girl!!
:flower;
Love, luck and strength, Cas
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Great.
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Going back to Toronto July 13 to meet the nephrologist and surgeon.
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:wine; Here's hoping for good things to happen for you guys in Toronto!
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Yeeessss!! I am so excited for you to get a kidney!! :yahoo;
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So it's official. He only has 3% PRA and our cross match was negative (good). This means that I can donate my kidney to him. The nephrologist there (who called himself the final step, the "gatekeeper" ) said I was extremely healthy and it was one of the easiest reviews he's had in a long while.
I was unable to meet with the surgeon yesterday (he had an emergency) but it will just be a formality as he has to check the box that he explained the risks to me before hand.
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Yes!!!!!!! I am so excited for both of you! I will keep you in my prayers and can't wait to hear when the date is!
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The way is cleared. Congratulations.
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So apparently to get listed takes forever, but surgery yikes they want it done asap. They called and asked if we could do it August 21. That would be awesome but he wants to wait until November or December of this year. Have to admit, waiting makes me nervous.
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Excellent news!!
Why does he want to wait until later in the year?
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His daughter is getting married at the end of October and we know we will have to be 1,000 miles away from home for a month or so after the transplant as we are required to stay close to the hospital. So the wait is just in case.
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His daughter is getting married at the end of October and we know we will have to be 1,000 miles away from home for a month or so after the transplant as we are required to stay close to the hospital. So the wait is just in case.
Good reason!
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Wow! That wedding will be special. Not just celebrating marriage, but life and giving, as well! I am so happy for you both!
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We have a date. Our surgery has been scheduled for November 8th.
:cheer:
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We have a date. Our surgery has been scheduled for November 8th.
:cheer:
Congratulations!
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That's less than a month away! How wonderful is this news! I'm thrilled to bits for you!
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Best of luck. Hope it goes well.
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Awesome news!
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Great to hear!
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Will send prayers and well wishes north to you guys! :canadaflag;
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:yahoo; Woohoo!!
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In my diary, great news,
Lots of luck, love and strength for the both of you, Cas
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We are one day post transplant here. I'm doing so well the docs might release me tomorrow. My husband who I've only seen for an hour is apparently doing quite well too. The kidney picked up and and started working right away.
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Such fantastic news!!!! I'm so proud of you.
Wishing you both a speedy total recovery
Lots of love, luck and strength, Cas
:flower;
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That's great to hear! Hope you both recover fast and live well! Just in time to ring in a new year for a new beginning! Best wishes! :bestwishes; :canadaflag;
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Congratulations!
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Wow! Congratulations!
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Great news!!! Congratulations!!! I send you both my best wishes & a speedy recovery & the best of luck for the future !!!
Kristina. :grouphug;
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I was indeed discharged after a two night stay. My worst part is severe shoulder pain. Apparently all the gas they insert into me travels up to my shoulders. Its being treated with T3s.
As for my hubby, we have a different measure of creatinine in Canada - normal is 70 to 110. His was 877 before the transplant. It has dropped to 193 as of this morning. Almost in the normal range already.
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Fantastic news!!!! Thanx for the update.
Lots of luck, love and strength, Cas
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Just discovered your story. Congratulations and good luck for the future. And if, in Canada, they remove the stent in the same way they remove it in Britain, I wish him strength with that.
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The doc gave him the green light and we are home :)
Back to work, get ready for xmas.
His kidney function is now in the normal range - creatinine is 108
We do go back on the 21st for yes that awful stent removal.
But we are both doing great. He will be officially listed for a pancreas transplant in 2018.
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We do go back on the 21st for yes that awful stent removal.
The stent removal was not too bad for me and went quick. I did take an pain pill as recommended an hour before.
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He said it wasn't as bad he had feared, he made it worse in his mind. He saw the transplant team the next day and everything still going well. The plan is to get him relisted in about 3 months and his nurse said he would have a pancreas within 6 months of that or she'll come to our town and buy him dinner. I liked her a lot. She introduced herself as "Hi I'm Andrea and I'm here to make sure you die of old age."
on a side note, just before we left the dialysis machine was packed up and taken back to the hospital (we don't own them in Canada, not sure what the US is like). It was surreal seeing it packed up and I actually cried...I think I had prepared myself to see that one day at the end of a much different process. Of everything we've been through it was weird how hard that hit me.
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:clap; I agree Andrea sounds very likeable.
Glad all went well, and keep us informed on upcoming pancreas transplant news.
Lots of love, luck and strength, Cas
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Hi, I know this is an older thread but I received a k/p at once as well. Both took off working right away however in early days still, with drug changes, I panic when my blood glucose gets near the higher limit. It is stressful. I figured out that number shows up when my Prednisone is peaking.
My wait was short and testing straight forward. It was the tx team that offered the opportunity otherwise I had planned only for a kidney.
My HBA1C was very well controlled previously but the team said it offered a better quality of life. So far, so good but very early in it.
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So good to hear from you AND with such fantastic news!!!
Enjoy an extra drink from me, and keep doing well girl!!!
:flower; :cheer: :flower;
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Thanks! I will definitely have an extra drink for you as trying to make 2L a day is harder than I thought! :stressed; I am glad to see some familiar people here! Hope you are well!
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That's pretty cool. My guy should be relisted for the pancreas transplant by the end of May (six months after the kidney). He's not looking forward to the second operation but it is a go. I was worried for a bit as right after the kidney transplant he thought he would turn it down (due to the hard recovery from the kidney transplant) but he's recovered and back on board. It's crazy to try and drink 2L a day all of a sudden :) congrats!
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He's officially listed for the pancreas transplant. And the coordinator told us that all of her other type Os have 100% antibodies (his is only 3%) so he will be number 1....all he has to do is call them once he has lost 10 pounds. For future reference for anyone considering this transplant the doc's want your stomach to be flat when you are lying on your back.
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we had a bump in the road where he had to deal with his first acute kidney rejection that delayed this a bit but that was cleared up and last Thursday they called and said to be prepared he's close to top of list. Well they called today so we are on our way to the hospital for the pancreas transplant. Thoughts with the young man/woman/child's donor family at this time and very anxious.
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That’s good news. Best wishes for the transplant.
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Good luck!!!!!
Love, luck, strength, Cas
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we had a bump in the road where he had to deal with his first acute kidney rejection that delayed this a bit but that was cleared up and last Thursday they called and said to be prepared he's close to top of list. Well they called today so we are on our way to the hospital for the pancreas transplant. Thoughts with the young man/woman/child's donor family at this time and very anxious.
This is good news! Hope his surgery goes smooth. Must be a bundle of nerves but excited at the same time. Best wishes for the future! :pray;
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It starts really well. Surgery lasted 6 hours. In ICU for three nights. Liquid diet to start only Blood sugars perfect. Walking around like a champ. Then they started to give solid food. Cramps bloating constipation. All assume it is due to pain killers. So medicine for that. Everything including suppositories. Nothing. A CT scan reveals collapsed bowel. They figure the spot where new pancreas was attached to bowel not healed. Back to liquid diet to let heal. If not would have needed more surgery. But it heals on its own. All total ten nights in hospital. Recovering well now.
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Sounds positive, that's great to hear! Does he still have to test his blood sugar for a while? No more diabetes? I suppose the real test will be when he can eat solid food. Hope he's resting and taking it easy, plenty of time to test food later. Thanks for updating us. How you holding up? Be sure to let yourself rest too. :cuddle;
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Excruciating times Justagirl, hoping the recovery continues
:flower;
Love, luck, strength, and recovery, Cas
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After they let him out Friday we had a good Saturday and then he was feeling unwell on Sunday. Back for bloodwork Monday morning and his white blood cell count was through the roof. He was readmitted for two more nights so that they could give him IV antibiodics. They figure it was all to do with the bowel obstruction that caused bacteria in the gut to enter his bloodstream.
He's out again and feels good. He still is supposed to check his blood sugar daily for the first three months as that will be the first sign there's anything wrong. We're told that once he gets past a year with the new pancreas then in their experience the pancreas will last for the lifetime of the patient.
No more diabetes.
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Glad he is back home. The post transplant roller coaster should level out in a month or so.
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:flower;
Thanx for the update, and enjoy some delicious extra drinks on me :cheer:
Such great news
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great to hear...please keep giving updates :)
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After they let him out Friday we had a good Saturday and then he was feeling unwell on Sunday. Back for bloodwork Monday morning and his white blood cell count was through the roof. He was readmitted for two more nights so that they could give him IV antibiodics. They figure it was all to do with the bowel obstruction that caused bacteria in the gut to enter his bloodstream.
He's out again and feels good. He still is supposed to check his blood sugar daily for the first three months as that will be the first sign there's anything wrong. We're told that once he gets past a year with the new pancreas then in their experience the pancreas will last for the lifetime of the patient.
No more diabetes.
That is very good news! I think it would be the hardest thing to go thru what you guys are going thru, I just could not imagine. I'm glad they are looking to the future with his new pancreas, I'd take that as a good sign. His feeling well is also a very good sign. The most important! Thank you for updating us. Have a good week!
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They let us come home from the big city, sent him home with a tool to remove his own staples as three weeks was not enough time for them to heal. Ok, but I'm not doing that lol. Hope he'll take their advice and has his family doc do it.
Weekly blood tests for three months now. Best thing for him is that he ceases to be followed by his local renal team as they don't have the experience for the PAK transplant so he'll be followed by the big city docs for the rest of his life. He never found he was well looked after locally so he's glad about that.
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Glad to hear such good news.
:flower;
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I'm glad you are back home and also that you have the big city care team now. I hope they treat your husband well and keep him healthy.
Looking back at your second post: (And then the rest of the posts – looking back it’s been a long process for you, I really hope you and your husband get a long break on the healthcare front.)
When the call comes we will have to travel to Toronto (they arrange that as time is of the essence) then we are on our own. We would have to stay in the area until medically cleared (4-8 weeks). She said to have fund at the ready of anywhere from $2 to $10K dollars to cover expenses.
How did it feel for you living through the transplant out of town? Were you in a hotel for the time? If you had had a center closer would you have begrudged being at that center, even if it meant that your husband was transplanted sooner?
I’m wondering as I could have been listed in 3 (US) zones that are all under two hours, away but choose just the close DC zone as I didn’t know how hard it would have been on my wife (and our two cats) for her to be holed up in a hotel out of town for the post-transplant period. I’m happy I was close to home, and also found the post-transplant stay fairly short, but I don’t know how the follow-up care for the weekly (or more frequent) visits in the first three months would have gone if I was at an out of area transplant center.
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Yes, he deserves a break from operations and hospital stays.
We really didn't have choice but to go away for the transplant, they don't offer surgery like that locally. Even people who need other complicated surgeries for cancers or heart problems here have to travel the 1,000 miles. And I'm glad because neither of us have confidence in local doctors for complicated matters.
For his first surgery (by-pass) I was in a hotel. Actually I was in four different hotels as I could not find reasonable accommodation so I kept moving. I'm talking couldn't find less than $500 a night. That was a huge pain. Some hotels where half hour train ride away.
The second surgery (kidney) was scheduled so I was able to rent a condo for a month. Turns out we were there for a month and one day so we were in a hotel for one day. I was a bit panicked as we were running low on funds and the thought of getting more $300-$500 a night hotels was not good. It was about a 20 minute walk to the hospital sometimes we had to cab it because we were sore, sometimes we walked, and later on that month we had our car.
The third surgery (pancreas) was unscheduled but the company I rented the condo from for the kidney was able to rent a different condo to me for the month. This one was really close to the hospital, like 3 minute walk. I spent two nights on a chair at the hospital while we waited for surgery as I didn't want to rent anything for a month until the surgery actually happened (doc said it could be cancelled right up to 30 seconds before). Then one night in a hotel then to the condo. We ended up wasting a week as we got to leave after 3 weeks, no refunds as the rentals were only by the month but you take your chances. I would have lost my mind in a hotel room for three weeks. I need a kitchen :)
It's a bit hard as you don't have those things you use for comfort at home, like a couch, or a recliner or your favourite blanket and slippers, proper pans that you are used to cooking in. But we tried to treat it as a adventure/holiday. We had family visits on the second surgery that helped pass the time. We have no pets so that was useful. I was lucky at work as my coworkers are terrific so they were very supportive of my time off.
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Hey Just a Girl,
Have not been here for awhile but I have seen your husband had his pancreas transplant! Congratulations! Can't stop smiling for him and for you!
Yes, I remember the liquid diet for days post SPK well and had a similar white blood cell spike afterwards. As the surgeon explained, when they work with a pancreas, it's a bit of a dirty situation since they have to attach it to the bowel. It's true that they advise to check blood sugars regularly in the beginning to detect if anything is wrong, but to be honest, I haven't stopped, and it has been 8 months since the surgery. I was born Type 1 diabetic so in all honesty, I don't remember a time not checking my blood sugar. I am still in shock a lot of the time that I can eat carefree and no more lows. That said, it will be nice for your husband to be able to stop that annoying little thing! Oh happy days!
Your team at your transplant center must have more up to date information than mine. From your post, I learned that if the "new pancreas" goes successfully for a year, then, it is good for a lifetime? Is that really so? I hope so! I mean. nothing is certain, but that hope lightens my mood. To be honest, I've heard so many numbers thrown around. My local neph team says something like "they usually only last 2 years" and my nephrologist makes it seem like it won't last long either. My tx coordinator made me feel a little better that she has a patient with his going 20+ years. Does your center have any sources or research?
We have a situation like yours too in that my local renal clinic doesn't have experience or knowledge on PK tx. And so, I have to make trips to see the team at the tx center mainly for the pancreas or things like kidney biopsies. However, they will look at my blood work and adjust my tac levels because SPK (or PK in general) troughs are the same than single kidney.
And also, like you, my tx center is close to 10 hrs away by car. We have to take two flights to get there. Lovely flying Air Canada Express. ::) Post tx, we were stuck in a hotel for over 2 months. But now, when we go back to the tx center (have been back 2x, will go back at the end of the month), we turn it into a little vacation since there are multiple appointments. Another great savior has been OTN (Ontario Telemedicine Network) for teleconferencing with some specialists in regards to transplant. They fax blood work requisitions during the teleconference, get the results and then advise locally. It's not ideal to be so far from the tx center city but it works out well!
Again, congratulations and it's nice to see someone similar in regards to being far from their center. All the best for your husband and his new journey.
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I was in four different hotels as I ....... couldn't find less than $500 a night.
Where the hell was this?
England is suppose to be really expensive for hotel accommodation (you constantly hear American tourists complaining about it) but you can find plenty of cheap hotels for under $50, average ones for about $100, really good ones for around $150 to $200, and luxury ones for $300 to $400. For $500 you would expect it to include a dinner of caviar and smoked salmon, as much French champagne as you could drink, and your own personal butler on call 24/7.
(The last time I stayed in a hotel, about 3 years ago, it cost less than $24 a night, but admittedly it was a crap hotel, and the fire alarm kept going off for no good reason, usually in the middle of the night.)
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I do not want to overstep privacy boundaries if JAG doesn’t want to reveal where, but in the context of tx centres and hotel prices, it must be a city like Toronto.
Not an expert here but I think the tx program is at Toronto General and the hotels around the area in regard to pricing are not too bad.
Most are low priced in the range of around $150 to $300. There are a handful in the 1 km range over that: The Adelaide, Shangri-La, Windsor Arms, Cambridge Hotel. And they are just $400+ for very basic, but nice, rooms. If my memory serves me well, it’s the Cambridge that is close to the hospital closest to $500 + taxes. I guess the others plus taxes comes around $500. And then parking, with a car.
The only instances of higher end prices I can think of (around the hospital network) are the Fairmont Royal York at around $700 for the Gold standard and perhaps close to $1500 for a large suite.
I don’t go to Toronto for transplant concerns but when we go for other medical, we stay at the Four Seasons. It’s not too far from the hospital network and I know it’s clean. They don’t offer medical rates though, must be below them.
It is possible to run into the $500 rate in the area but most are much more mid-range for tl:dr.
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OK, so Toronto is off my "cities to visit" list! (Although it is now top of my "cities in which to open a hotel" list.) I loved the line "Most are low priced in the range of around $150 to $300." You obviously have a different definition for "low priced" than the rest of us. My absolute maximum for a hotel room is about $100, but 99% of the time I'll stay in places that cost less than $50. There was one exception , when I let my sister do the booking, she likes a bit of luxury (her room had a four poster bed) and history (hotel was built before Columbus landed on the shores of what was to eventually be called "America").
I'm guessing that the streets of Toronto are filled with Ferraris and Rolls Royces which are driven by people who call them "cheap little run arounds".
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Not to derail this more but perhaps one day, someone will have transplant and hotel questions, in regard to Toronto.
There are numerous hotels across Toronto that are in the below $100 range. People can find such accommodations easily. It’s the downtown area that has the upper priced accommodations and since the hospital is there... yes, you can assume safely! They don’t really work in regards to proximity to the tx hospital. So, yes, you still visit affordably!
Although, for clinic visits, they say to stay in a “1-2 hour window” (at least my tx team said so) around the city so technically, one could stay further away. But, without driving, it becomes too much a chore.
The streets are not filled with Ferrari’s and Rolls but they show up in certain areas. It’s a mix of all classes like any other big city!
When my husband and I go to Toronto for medical, we stay in Yorkville so I can shop my appointment-related depression away. But, that’s just us. Hotels are upper end and don’t really cater to medical travel but it works.
For transplant in another city centre, we took a taxi everywhere. Our taxi bill was rather elevated since my husband didn’t want to rent a car in a strange city and still strange country for him. Paying 2 months for a hotel was acceptable but the taxis irked me.
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Yorkville. Lovely place. We' d travel well together. We alway go up their our last night for dinner at our favourite Italian place (Dimmi)
It is Toronto General. His doc is the head of pancreas transplants for Canada (Dr Schiff) so I'd take what he says with a lot of confidence.
As for the hotel disaster on the first trip obvious the bypass was emergency surgery and I was there the week of the Toronto International Film Festival. That's the most expensive week for the city. You have people like Jennifer Anniston booking 2 floors of rooms etc. Usually I can get $250. Still cheaper to rent a furnished condo
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Yes, for sure, if it comes from Dr. Schiff it has a lot of merit. That’s absolutely wonderful for such a respected expert to have such a positive outlook on graft “life expectancy.” Thank you for sharing that nugget of information. :cheer:
We will have to give a Dimmi a try when we trudge down there again. At the Four Seasons, they have Café Boulud on site so we mainly have dinner there. I hate having to get on the scale at a medical appointment the next day but yay, pancreatic freedom!
The odd night we take the longer cab ride to Don Alfonso 1890... if we get reservations when we book early! (And no appointment the next day.)