Update on Tony and "The Little Kidney That Could"

[MooseMom]

I'm glad he'll be able to come home tomorrow.  I know you miss him very much.

[jbeany]

No place like home!

[smcd23]

Hold on to your hats, everyone TONY HAS BEEN RELISTED EFFECTIVE JULY 1!!!!! 

We still don't know the how, why and what will happen next time that will prevent this, but I think we will find that out next Tuesday when we go back up and meet with the surgeon. The coordinator and social worker came down today before he was discharged and told us. The coordinator said he is active but on medical hold, and that she submitted the paperwork to get his time back. Tony said he is not ready to do this again, and she said that's fine, they will keep him on medical hold until he and the team determine he is healthy enough and ready to do it again. Tony said this time it has been far worse than when he had my kidney in 2008. He was cut open 3x in both cases, within 36 hours the first time and within 12 days this time, but this time he hasn't recovered nearly as well. He's lost 50lbs since the first surgery, and a lot of that has been muscle. So the plan is to see an endocrinologist the end of this month to hopefully get his hormones straightened out (his testosterone is 1/3 of what it should be in a man his age) and also get him into outpatient PT so he can build up some muscle. He was even talking about getting a stationary bike or joining the gym. He'd like to put on 20-25lbs of muscle before he tries again, and told the coordinator at least 6 months.

But despite the positive news, today has sucked. When he was discharged, he was nauseous. He assumed it was because they gave him ALL his meds in 1 dose this morning, and his stomach couldn't handle it. His bp was also low, so he figured the combo was bad. Then he threw up while I was out an appointment. He's been running a low grade fever also. I have called each time he's vomited, and this time I spoke with a doctor, who said they'd be happy to see him tonight, but we're 1.5 hours away. So we decided that they would make him an appointment in clinic tomorrow, and unless his vomiting increases drastically, or his fever goes up to 100.5, we will ride this out tonight.

Did I mention I LOVE the 86.2 mile drive each way? Oh and missing work, missing work is a BLAST! I just wish they'd stop letting him go when things are still not right...

[jbeany]

Oh, that has a familiar ring - "Capable of standing upright for more than 2 minutes?  Yes?  Discharge!"

[MooseMom]

OK, so now you have a game plan of sorts.  I am thrilled to bits to learn that Tony will be relisted.  Maybe there IS light at the end of this dreadfully dark tunnel.

It's an excellent idea to be "in training" for his next surgery.  I am very glad to hear that everyone will be working toward helping him get his strength back and build more muscle.  The effort will be worth it.

Let us know what the surgeon has to say.

[smcd23]

I want him to look at this as training for the kidney games lol. I am trying to lose weight and I had just got him into walking with me before this surgery. Now he's going back to square 1. But hopefully he can work with me but instead of losing he will gain

Jbeany yes, this is the 3rd time we felt like he was discharged too soon. The 2nd discharge last week was worse because he had all that swelling. This time it just appears to be a stomach bug or something he ate that caused the vomiting last night. My stomach has been queasy but I assume it's from lack of sleep and stress. His big concern is if it's a stomach virus that he won't be able to fight it off. He vomited last night around 1130 but was ok all night after. Fingers crossed he does ok today.

I'll definitely let you know what the surgeon says on the 17th.

[jeannea]

Is Tony on Medicare? When I was admitted they gave me a number to call if I thought I was being sent home too soon. It's part of the Medicare rules.

[smcd23]

Yes he's on Medicare and my insurance (Medicate is primary). Problem is he always wants to go home so he doesn't care if he's sent home too early. I care when I'm bringing him back.

[smcd23]

So we had our appointment with the transplant surgeon today. I will say he was much more apologetic, no make that sincere today when offering his condolences and telling us how very bummed he was that this didn't work out. We had heard he was upset about it last time we were there, but this was the first time he sincerely expressed it.

What he did say is that there can still be a next time. They have found an antibody in common between me and the donor this time. They believe this antibody sparks the immune response from Tony, which caused the rejection. The first kidney wasn't named a rejection because he clotted it off, but they think that the clotting was his body's first defense against the invading organ and antibody. This time around, since he was on blood thinners, his body couldn't clot it off, so it took it awhile to mount such a profound immune response to kill it. So their plan for next time is the usual suspects - cellcept, prograf, steroids, but also adding plasmapheresis ahead of time, thymoglobulin and rituximab. Possibly adding in another one if necessary. He would have to stay in the hospital longer, and he'd have to go back and have infusions of rituximab every 3-6 months for an unknown amount of time. They are of course, going to test the donor organ for this antibody as well, but they may or may not have enough time to wait for the results depending on when they get the organ. He wants to follow up with us in 2-3 months to get a full evaluation, and get activated again. Hopefully by then we will know if they gave him his time back, and also he will hopefully have gained some weight.

So, that was the update. Crossing fingers that the next time works...

[catcare]

at  least  they  know  what  to  do  for  the  next  time. 

you  are  an amazing person. best  wishes.


catcare

[MooseMom]

Gosh, I really don't know what to think.  I'm very glad that the surgeon feels Tony should be relisted, but having to go through a third tx must be a daunting prospect.  I really am eager to know what will be done with Tony's previously accrued wait time and fervently hope they give it back to him.  It's only fair.

How does Tony feel about all of this?  How is he coping?

[bleija]

as for just having mine, i cannot imagine going through it twice and looking at a third time...  i hope this is the issue, and not just something else... hopefully he can rebuild mentallly and emotion and physically and be ready for the next time around

[smcd23]

I think he is okay with it. I haven't really brought it up much, since I ended up having car trouble on my way back from getting my name changed on my drivers license, and that turned into a cluster eff of an afternoon. I will probably wait a day or two and approach the subject then.

I know he had been talking about calling Mass General and seeing if they've expanded their kidney/bone marrow program to deceased donors yet. That would, for sure, eliminate this problem. I am not sure if he is still thinking of that, or even calling to review the plan with them to see if they are in agreement

Honestly, the first surgery wasn't that hard on him. He was about 50lbs heavier than he is now, in better health (he was still stage 4, but peeing still and working) and he was up and about and driving long before I was. This time, it's kicked his butt. He's lost a ton of weight, he's down to 138lbs now (was 148-155 when he went in on June 15) and he's basically skin and bones. Being in the hospital for so long took a lot out of him. He has a hard time climbing the stairs and doing anything, really. Gets tired easily and feels he doesn't have the strength. He was gung-ho about this surgery, referencing the one in 2008, thinking it couldn't be that bad. Now, after this one, he wants to gain weight and get stronger before he tries again. Two totally different experiences. He wants to do it again, he wants a more permanent fix than dialysis, but after having been through this surgery, he wants to do all he can to lessen the blow. If the first surgery had been like this most recent one, I am not sure he would have gone through with the 2nd. But knowing that it can be not as bad, he is willing to try for #3 once he gets himself to a better weight and a bit stronger.

Emotionally, I think he is hanging on to the small sliver of hope that tells him that it could still work out. I don't think he wants to talk about it, because I don't think he wants to talk about that hope. I think he just lets it sit in the back of his head, and pulls it out when he's slipping into a dark place.

I have reminded/encouraged him to call the counseling center again to set up an appointment. I am going to call our family therapist tomorrow to set up a follow up appointment with her. We had one the day he was released but he wasn't feeling well enough to come with me. He's been taking his antidepressant, and he could return to the transplant psychiatrist in Boston if he wanted, but it's way too far to travel for an appointment, and I get that considering his truck gets a wonderful 12mpg. Now that he's on my insurance he has his choice of local providers.

So the next thing on the agenda is the endocrinologist. Hoping to get him on testosterone so he can build muscle because we know he has low testosterone levels. Depending on what the endocrinologist says, maybe some human growth hormone or other hormone replacement as well. He's been consistent in his weight loss while on dialysis, but never has it been this severe. The doctors, dialysis nurses and basically everyone that sees him is very concerned. I in a way miss puffy, swollen Tony because his face was fuller and less skeletal and he looked more like Tony and not the walking dead.

[jbeany]

Hope, no matter how slim the thread, is always stronger than you think.

 

[Poppylicious]

Thinking of you both.

*huggles*

[cariad]

Congratulations to Tony on being relisted, but of course my sympathies that he continues to struggle. What a devastating experience, emotionally and physically, for you both.

I know he had been talking about calling Mass General and seeing if they've expanded their kidney/bone marrow program to deceased donors yet. That would, for sure, eliminate this problem. I am not sure if he is still thinking of that, or even calling to review the plan with them to see if they are in agreement

Please urge him not to put his hopes here. First, he will not qualify, they are only considering the deceased donor option for first transplants, live donor for second transplants. Going for his third transplant, unless they make an exception for him (and they won't) he would be automatically excluded. Also, their protocol requires a PRA of zero. Additionally, it is my understanding that this program has been shut-down, possibly permanently. It says suspended on clinicaltrials.gov: http://www.clinicaltrials.gov/ct2/show/NCT00801632?term=kidney+transplant+bone+marrow&rank=4 Finally, I've spoken to the one surgeon and, well, she earned the nickname The Wicked Witch of the East in this house for quite a long while.

If he wants to go the clinical trial route, I would see if your doctors have suggestions. The MGH trial was started to help a woman in dire health after her first transplant, and an acquaintance of mine had a study begun for her at UW-Madison. Maybe some enterprising doctor will create a study to help Tony, or at least be able to recommend an appropriate one for him to investigate.

I hope this is the beginning of better luck for you and Tony.

[smcd23]

Cariad - are you referring to Dr. T-R? She reminds me of a character from a kids movie, but I can't put my finger on it. We had rather good experiences with certain folks from MGH, but others not so much. Ever since their wonderfully disorganized coordinator left (she was convinced Tony's name was Michael) they've had this rapid turnover of them, which I don't like. But their doctors have always been more than kind to Tony. They cried when he lost the tx. He still goes down there to see the tx psychiatrist because he hasn't been able to find a good one up here that is experienced with chronic disease.

Tony's PRA is still zero. My kidney didn't work long enough to sensitize him, and he had so much plasmapheresis done this last time that he's retained no antibodies. He was doing some research tonight as he still doesn't have hepatitis B antibodies despite over 12 shots of it, and he now thinks he has low immunity until he has reason to fight something, which brought him back to the clinical trials page where he saw it was suspended. He is just so afraid that if something happens next time around, he will be out of luck for good. He found some article where they followed 20 patients or so with a problem similar to his, and only 2 of them retained the kidney long term, and that was for 8 years. So he's not feeling so confident that this new plan will work anymore.

[jeannea]

This has been terribly educational. I just wish you hadn't learned it too. Thank you for sharing with us.

[cariad]

Cariad - are you referring to Dr. T-R?

That's the one. I only spoke to her by phone and somehow she managed to convey her utter disdain for both me and my husband, while crushing all of my hopes, in the course of a 5-minute conversation.

We had rather good experiences with certain folks from MGH, but others not so much. Ever since their wonderfully disorganized coordinator left (she was convinced Tony's name was Michael) they've had this rapid turnover of them, which I don't like. But their doctors have always been more than kind to Tony. They cried when he lost the tx. He still goes down there to see the tx psychiatrist because he hasn't been able to find a good one up here that is experienced with chronic disease.

Then I think he should absolutely talk to one of their doctors about suggestions for how to proceed, what exactly is going on here, and if there is a clinical trial that might offer more hope. I have no doubt that those doctors are some of the top in the field, but after a lifetime of having to endure doctors (before they made such ground-breaking discoveries as 'bedside manner is important') I am someone who needs to feel that my doctors, most especially the ones who are going to knock me unconscious and cut me open, actually see me as a human being and perhaps even like me. Once I pulled myself together after that conversation with the MGH doctor, I realised that I would never have felt comfortable letting her operate on me. I know that personality does not matter much to all patients, but to me it matters a great deal.

Huh, OK, I am surprised that Tony still has a PRA of zero, sorry I assumed that he would be highly sensitized by now. Was it greater than zero before the plasmaphereisis? I asked the MGH doctor if I could have plasmaphereisis since I was rejected for the trial when my PRA went above zero. She flat-out said no and really refused to say why and made it obvious that she felt I was wasting her time. (I had been told to contact her by Sandy - is she not there anymore?) I spoke with my surgeon about the MGH trial and read an article summarizing their results, and what I found was far from encouraging. Based on my layperson's knowledge of it, I doubt it would be a good fit for Tony, but who knows what they will develop in the near future.

I appreciate you sharing what you are learning from this ordeal.  I rather despise being told that my medical experiences are so interesting because it always strikes me as saying 'Your suffering is so entertaining! Carry on!' but I have to admit that this is fascinating information. I join everyone else here in pulling for you and Tony and hoping that the three of you can move on to an uneventful (medically, anyhow) post-transplant life as soon as possible.

[smcd23]

Huh, OK, I am surprised that Tony still has a PRA of zero, sorry I assumed that he would be highly sensitized by now. Was it greater than zero before the plasmaphereisis?

His PRA was zero after my kidney because it didn't have a chance to work. He had clotted it literally within hours. I don't know what time we got out of surgery, I think sometime in the late afternoon, our families left around 8pm and shortly after that they took him back to surgery because it had stopped working. He wasn't sensitized at all from that go around. This time around I have no idea if he ever became sensitized as the kidney was working, but where he had so much plasmapheresis while they were trying to save it, they told us he still had a PRA of 0. But they also know what antibody his body doesn't like and will have to watch out for it in the future.


It's so funny you had that experience with that doctor. She's not my favorite one there, but she literally came in Tony's room and cried with him when he lost mine, and when we were there in December for his eval while we were waiting for DHMC to get their ish together, she came to speak with us and the social worker must have filled her in because she insisted on holding my hand and telling me what a good person I was and how she wanted things to get better for Tony ASAP.

As for the bone marrow thing, from what Tony and I have read on it, and what they told us about it back in 2008 when he first asked about it, it may be one of the few options for him. Since he'd take on the donors marrow and not recognize the organ as an invader, he wouldn't mount the immune defense he has mounted thus far against every kidney that's gone in there. He's feeling pretty discouraged right now because he found an article where they studied others like him who have this antibody that come up to attack only, and the longest any of them lived with a graft was 8 years

I had been told to contact her by Sandy - is she not there anymore?

We never saw anyone named Sandy, we had Jayne. Jayne was an older woman, British. She amused me to death. Aside from calling Tony "Michael" all the time, when his sister tried to donate and was told she had something wrong with her liver, I called and said I'd do it and went that very afternoon to see her. She looked at me and said "My yes, you are much bigger than your sister" I was like umm I'm not her sister, and yes, I am much bigger. Now give me the darn 24 hour urine jug so i can get out of her. This woman also lost 2 or 3 24 hour samples that Tony's brother brought in. I swear she had a fetish

I don't mind people telling me they've learned from the experience if they understand the experience. What gets me is people who know nothing about this sort of stuff, and they start asking and then have to ask more questions because they don't understand what any of it means. I don't want to have to explain 3x as much just so you get the basic gist of things! That annoys me more, I think. Certain people I know will go home and do research and "get" it, but to some people I feel like I'm wasting my breath.

[cariad]

Shauna, is there a name for Tony's condition? If his system is attacking within hours of a transplant, I'm not sure these current clinical trials would work without a major shift in protocol, which they may be willing to do, I wouldn't know. I saw that Jewish Hospital and St. Mary's health care in Louisville has a similar trial using deceased donors: http://www.clinicaltrials.gov/ct2/show/NCT00498160?term=kidney+transplant+tolerance+deceased&rank=1 The doctor who is directing the study is the same person who acted as co-Principal Investigator for the trial that I underwent. She is brilliant, cannot speak to her personality as I only met her twice and both times were fairly brief. Tony would not currently qualify for their protocol as written (plus you'd have to arrange to go to Louisville) but you might want to contact them all the same and ask some questions about possible plans to expand the program to other hospitals (like Harvard did) and when they imagine someone with Tony's history might be able to qualify for this. Worse they can do is say no, which is what the MGH doctor said to me ultimately. Perhaps I just caught her on a bad day (although she called me). I am relieved to hear that she does not treat her actual patients with such indifference!

If you'd like to know more about my experiences going through Dr. Ildstad's protocol at Northwestern Memorial in Chicago, please feel free to shoot me a PM. The details are getting fuzzier for me as time goes on, but I can still remember most of it. There have also been articles posted on this site and I wrote about it at length in the transplant stories section if you feel like doing a load of reading. A LOAD of reading. Let me know if I can give you any information that might be useful. Hope things are normalizing for your family, and that Michael Tony feels better every day!

[smcd23]

There is no name for Tony's condition that we've been told - essentially he is just having antibody mediated rejection because his body creates antibodies to attack a common HLA antibody that he doesn't have (but 98% of the population does) He doesn't have a positive cross match on the initial screening, but after a few days a crossmatch will show a positive between this particular antibody in the donor and an antibody his body makes in response after the fact. They think his complement antibodies/immune system kick in, so that's what they are going to target with immunosupression next time.

I keep checking the clinical trials page, and I checked out the link you sent and forwarded it to him. If he wants me to make the call to ask about it, I will. But I don't know if he'd want to be that far from home for that long, and he hates the South. I also noticed one where they are experimenting with one of the antirejection meds the current facility had thought about using on him, and that one is in NYC. I am going to tell him to look into that one, too.

We made progress with the endocrinologist, and he had to run some more up to date labs, and will start treating him with testosterone and possibly some other hormones so he can gain weight, and hopefully in October when we go back for follow up, he will get activated if he's ready to be, and maybe the doctors will have some more ideas or tricks up their sleeve. I know there has been research into what causes this to happen in people like Tony, so I am sure down the road there may be better solutions, but he's so scared to lose a 3rd one that I think he is going to explore all his options before jumping into another surgery.