giramomma
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Post by giramomma on May 8, 2021 11:45:10 GMT -5
Threads wander. It's the nature of the net. And blood type is really on point. Nuts. I just realized it is possible I will not be considered a viable kidney donor. I had viral hepatitis when I was 43, a complication of mononucleosis. It happens. But ever since then blood banks have refused my donations, although the hepatitis is long since gone. Try not to go there. You don't know yet.
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lurkyloo
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Post by lurkyloo on May 9, 2021 13:02:45 GMT -5
How did the bloodwork look? (I am O+ but I seriously faint at the sight of a needle. Nearly fainted when I got my covid shots Donating blood just to be a good samaritan was never on the table.)
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finnime
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Post by finnime on May 9, 2021 14:56:30 GMT -5
DH hasn't gotten his results yet. Will be in a day or two. They'll post them on his PCP portal, I'm sure. They were ordered by his endocrinologist so it may take a bit more time to loop back to the PCP.
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debthaven
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Post by debthaven on May 9, 2021 16:22:18 GMT -5
Praying for good news for you and your DH Finnime.
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finnime
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Post by finnime on Jun 8, 2021 7:44:44 GMT -5
Meeting with the transplant team via Zoom in a few hours. DH did not get the latest results of his blood tests. He doesn't really want to know and reasoned that if they were very bad one of his doctors would have called him.
I know this meeting is really informational about the program, but I'm a bit nervous. I imagine they will be looking to assess how he might do as a recipient if he should be fortunate enough to get a kidney.
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TheOtherMe
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Post by TheOtherMe on Jun 8, 2021 8:22:45 GMT -5
Good luck
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giramomma
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Post by giramomma on Jun 8, 2021 8:40:34 GMT -5
I hope the discussion goes well.
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finnime
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Post by finnime on Jun 8, 2021 15:51:36 GMT -5
Lots of information disseminated during the meeting.
Greatest impact for us: the shortage of cadaver kidneys realistically means people with type O blood (which, we found out, includes DH) need to plan on a 7 - 9 year wait unless they can get a living donor. DH, at 72, is not eligible to be listed for a transplant unless he can get a living donor. They have found that transplants done for patients in their later 70's do not have good results. The surgery is demanding to recover from and the immune-suppressant drugs have significant side effects.
I have signed up to be a kidney donor. I've passed the screening on paper, next will be physical testing. People who have been donors automatically get first priority for a transplant if they themselves need one later on.
It is possible or even likely DH would not get my kidney, but someone will, who themself has donor, who matches to someone else's need who has a donor, who matches to another patient, whose donor matches with DH. It's not just blood type they match on, but it is a real boon to find out we are both O+.
They strongly encourage asking people we know using social media to consider donating. The more donors the greater likelihood of a successful end.
Financially we'll be okay. We are both dual-insured, with Medicare and BCBS federal employees program, so all costs would be covered.
Donors have all expenses covered including lodging, travel, meals, lost wages, disability insurance.
Like I said, a lot of information. Need to process.
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buystoys
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Post by buystoys on Jun 8, 2021 16:09:59 GMT -5
finnime, I wish I could be a donor, but I can't. Hugs to you for all you're doing in this difficult time.
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finnime
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Post by finnime on Jun 9, 2021 6:51:17 GMT -5
Started to consider logistics. If I'm approved as a donor (highly likely) and DH receives my kidney, we're looking at something like September. Neither of us should be driving for a couple of weeks after the operations. Longer for DH, who will also need many more appointments and follow up. So I'll need to figure out some transportation. Uber, I guess, makes most sense.
If we wind up with one of those chain donor/recipient situations then I could donate very soon, in 6 weeks or so if that's more convenient. We'll see. I do want to get up to Maine for July 4 and see family, take a break.
Need to get DH scheduled for a required pre-op colonoscopy.
So, ready the house if I can figure out $ to do so. Take a quick vacation or three between pre-op testing. Put house on market perhaps in October if post-op. Have one last hurrah here for Thanksgiving, with family coming down from Massachusetts. Move out to some temporary quarters. Close on house sale in early December? Can make it a condition of sale if we want.
Barring complications we will settle in Mass. in early 2022 and plan some traveling on DH's bucket list.
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finnime
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Post by finnime on Jun 13, 2021 9:15:16 GMT -5
Reading some research. Apparently at DH's age, 72, dialysis starts to cross into the territory of no clear benefit vs. a more conservative approach. It does lower the quality of life and does not really increase lifespan for people in their later years. Hmm.
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finnime
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Post by finnime on Jun 23, 2021 5:54:16 GMT -5
Had a video call with 2 of my brothers and my sister. DH wanted me to do this; my family is very close. They each brought up points I hadn't considered much. Mainly, that DH's history suggests strongly he would not do well with major surgery. He did pretty much lose a year and a half to his foot and ankle surgery. He became septic. My sibs think I'm moving too fast, that this would be major surgery for me as well, and DH agrees. He would not be ready psychologically and possibly physically for a transplant this September. But there comes a time when planning for a transplant is not realistic.
Now I've retreated to more of a wait and see mode. We're going to concentrate our energies on preparing and selling our house.
I feel a lot of apprehension about this. Oldest DB saw a picture of DH on Facebook and commented he didn't look well at all. It's true he's aged a lot very recently. And now he has a cough.
It's confusing. DH says he's at peace with whatever unfolds, but then that he's got things he wants to do before the end. None of us know how much time we have left. But without dialysis and if he does not get a transplant soon, DH's time will be short, I believe. Unless he is stable where he is now.
We got a package of information and documents from the transplant center that DH wants me to read. He has not read it himself.
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NomoreDramaQ1015
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Post by NomoreDramaQ1015 on Jun 23, 2021 7:28:29 GMT -5
Finnime does your doctor's office or his or the transplant department have counseling available or nursing advocates you can talk to? UNMC's cancer center for example assigns everyone an advocate it is someone who can go through with them all the medical stuff and people can express their concerns/worries to. That person becomes your go to person for anything you need and they help control the flow of information/appointments between departments. Apparently it really helps because obviously it's all very overwhelming, having a neutral third person in the know can be of great benefit.
This is a HUGE decision for anyone involved and I can imagine there is never truly a "right" decision because any decision you make has so many unknown variables. Finding someone to talk to, maybe even a support group might be of benefit.
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finnime
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Post by finnime on Jun 23, 2021 8:22:21 GMT -5
That's a good idea, Drama, I'll check.
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mamasita99
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Post by mamasita99 on Jun 23, 2021 8:30:49 GMT -5
Thinking of you, finnime. These are some tough decisions for you guys to make and I agree, a counseling session with someone who can help explain your options would be super helpful.
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Post by Deleted on Jun 23, 2021 19:25:17 GMT -5
finnime, I will pray for you and your DH tonight. I don’t know if that means anything to you, but that’s all I have. I dare not insert my uneducated opinions into something so serious, even if I had some (opinions), which I don’t, because I’ve never been in a situation even remotely like yours and your husband’s. So when I have no idea how to help myself or somebody else, I pray. And if it’s someone I like and care about, I offer a shoulder to lean or cry on and hugs. That’s a big deal, because I’m weird about people touching me (I don’t like it!) but people I consider to be my peeps can touch me, and I always have a hug for them if they need or want one. So here’s your hug I was serious about praying too.
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finnime
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Post by finnime on Jun 23, 2021 20:17:59 GMT -5
I thank you from the bottom of my heart, @pinkcshmere. We need prayers, and hugs.
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daisylu
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Post by daisylu on Jun 24, 2021 7:40:39 GMT -5
Counseling sounds like a good idea. I am sorry you are having to make such hard decisions, and in the end we still end up questioning if we made the right choices.
I will also pray for the both of you.
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finnime
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Post by finnime on Jun 24, 2021 8:19:16 GMT -5
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anciana
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Post by anciana on Jun 24, 2021 11:33:35 GMT -5
What a difficult decision to be made, finnime! I hope all the family, friends and experts you surround yourselves with will be of help. Keeping you and your husband in my thoughts!
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saveinla
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Post by saveinla on Jun 24, 2021 11:48:27 GMT -5
Thinking of you finnime and hope you and your DH can make the decision that is right for you together.
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Post by Deleted on Jun 24, 2021 12:23:57 GMT -5
Had a video call with 2 of my brothers and my sister. DH wanted me to do this; my family is very close. They each brought up points I hadn't considered much. Mainly, that DH's history suggests strongly he would not do well with major surgery. He did pretty much lose a year and a half to his foot and ankle surgery. He became septic. My sibs think I'm moving too fast, that this would be major surgery for me as well, and DH agrees. He would not be ready psychologically and possibly physically for a transplant this September. But there comes a time when planning for a transplant is not realistic. Now I've retreated to more of a wait and see mode. We're going to concentrate our energies on preparing and selling our house. I feel a lot of apprehension about this. Oldest DB saw a picture of DH on Facebook and commented he didn't look well at all. It's true he's aged a lot very recently. And now he has a cough. It's confusing. DH says he's at peace with whatever unfolds, but then that he's got things he wants to do before the end. None of us know how much time we have left. But without dialysis and if he does not get a transplant soon, DH's time will be short, I believe. Unless he is stable where he is now. We got a package of information and documents from the transplant center that DH wants me to read. He has not read it himself. This is more information, but technical, courtesy of my DW. Wishing you and your DH the best during a trying time. jamanetwork.com/journals/jamasurgery/fullarticle/395715
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finnime
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Post by finnime on Jun 24, 2021 18:21:13 GMT -5
Thank you, @x, that was very informative.
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finnime
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Post by finnime on Jul 9, 2021 5:45:16 GMT -5
I plan to check with ourselves once a week to see how DH is doing and is any action indicated. One thing my DB pointed out is that it's easy to get caught in a medicalization of our lives given this situation. That would be an awful lifestyle downturn. If we knew there were an upside, okay. But we don't know that. So once a week, I review.
Next week DH has more blood tests. We'll know from them if he's stable, at least. He has decided to not move ahead on any procedures including dialysis as long as he is stable.
The living donor program people have been in touch and I'm going to talk with them again today. My history of hepatitis did cause some concern. Also my depression. We'll see. It could be I am not a suitable donor for anyone after all.
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debthaven
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Post by debthaven on Jul 9, 2021 5:52:00 GMT -5
Thinking of you and your DH Finnime.
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TheOtherMe
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Post by TheOtherMe on Jul 9, 2021 6:54:38 GMT -5
Hugs
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NoNamePerson
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Post by NoNamePerson on Jul 9, 2021 7:01:42 GMT -5
I just saw this thread. Thinking of you and DH finnime.
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buystoys
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Post by buystoys on Jul 9, 2021 7:38:27 GMT -5
Hugs finnime. It's smart to do the weekly check in with yourself. You can put off any ruminating by delegating it to its appropriate time. Fingers crossed you DH's blood work comes back good.
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anciana
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Post by anciana on Jul 9, 2021 8:58:28 GMT -5
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finnime
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Post by finnime on Jul 21, 2021 16:01:16 GMT -5
Soooo, DH's test results continue to be stable! His creatinine has come down quite a lot (a good thing) but otherwise no changes really. He's a bit anemic.
I have a Zoom meeting for the living donor program at the end of next week. I'm going to commit to the Zoom, but nothing beyond that at this time. DH is convinced he'll remain stable indefinitely. Also, as my siblings and DS pointed out, DH has not done well recovering from prior major surgery. Plus DH does not want me to undergo the donor process.
The donor program people have an entire process that they onboard you to, including extensive testing, the next step after the Zoom meetings. They would expect to do that in August. I'm not going to do that, not now. Maybe not ever.
I am grateful he's stable now. One quarter year at a time . . .
Thank you all for your good wishes.
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