We finally got the call we have been waiting for - my hubby is on the double transplant list and is eligible for both pancreas & kidney. This is scary and exciting all at the same time for different reasons and in different ways.
He is quite excited by it all. He has the potential, if the right donor is found to be freed of all kidney and diabetic issues (in theory) for at least a little while. There are potential pitfalls, as with any major surgeries. One being the pancreas itself is a very delicate organ and doesn't transplant well. 1 in 5 or 6 fail. It is a very porous and veinous organ so many difficulties getting it attached and working. The other issue with the pancreas is where it is located and the type of surgery. They have only done 2 double transplants in our area in the past 12 months and neither one have been successful.
The other scary thing is that kidney transplants generally take a few days in hospital and a few days in the step down unit, a few days of observation post surgery and they are home in a week to 10 days. Pancreas transplants are so tricky and delicate that they have ever only had one person in hospital for less than 3 months post-op. The longest was a year. Average is 6 months in hospital after the surgery. Now THAT's scary. For varying reasons. The first one is that hubby doesn't do well with hospitals. Who does, really? The second is that I am self-employed and if I don't work, I don't get paid and neither do the bills, so it is very doubtful that I will be able to be at the hospital with him for more than a week or two. So, it scares me that he could be in a place he despises, alone for at least 6 months. That's not potential to break someone's spirit or marriage or anything! There will be some relatives of his in the area who can visit, but they aren't the most mobile either, so there will be a lot of alone time which is difficult on the head and heart.
We now have a lot of planning to do. We have to plan now for the good and the bad. We have to plan to pay for the post-transplant medications (for life), which we are hopeful the provincial government will agree to pay for. We're not sure of that though, so if they won't, we have to find ways to cover a few grand in medications a month as these are not optional medications. We have to plan for travel expenses, cost of living in Halifax for when he is discharged from the hospital as he can't come right home afterward. We have to plan for if things go badly what he wants for a funeral and how to pay for that. So far, the only thing I can figure is that we have a lot of financial planning to do without a lot of finances to plan with.
So, now I plan fundraisers. While I don't want my family to hold all the burden of helping me with this, it is what it is and I use what resources I have available. Right now, that is family. I'm thinking a concert with an auction to start the fundraising off. Then a CD, but that will cost $1100 - 1500 to produce, so not really a big gain there if you have to fork it out on production costs.
I also have to plan on finding constant and consistent work over the summer. Not teaching full time isn't an option this year as I am just making the expenses as it is. So, I will wait and see what comes available after adjudicating in April. One part of me hopes that the transplant happens in the summer when I technically have 3 months off, but I can't really take 3 months off or we'd be on welfare.
I also just realized that we are for lack of a better term, grounded. He can't leave the Atlantic provinces, or he has to go on hold on the transplant list. That rather sucks. Not that we have the finances to take a vacation mind you, but now that you know you can't, that's what you really want to do.
Oh the mind plays such nasty tricks on you when figuring things like this out.
Should be an interesting time. Could be a short time or a long time, but at least there is a period of time where we are productively waiting.
2 comments:
It is good news. Also, since he's A+, he's got a decent chance of getting a donation. About 1 in 5 people are A and about 60% of those are +.
My friend who had the kidney transplant is doing quite well afterward, so here's hoping that Van does as well, too!
Yes, it is good news.
They told him that A+ is a fairly uncommon tissue type and that he doesn't have many (any?) others competing with him on the list, so basically, the first young enough one with the genetic matching is his.
That makes it potentially immediate, which we are unprepared for in every way right now or maybe never.
Either way it is the most frightening good news and I'm really concerned.
I'm glad that your friend is doing so well. I think that if hubby was just getting the kidney he'd have a walk in the park and be out in a week or two. They warned us that the past few that have had the pancreas have begged for it to be taken back out. That's my problem.
I guess my problem is I'm afraid we're being too greedy with our hope and expectations. Silly, eh?
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