I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: smcd23 on June 24, 2012, 11:10:18 AM
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I figured I'd start a new topic to post the updates on Tony, since it appears this will be a long journey.
So far they have determined this to be major acute rejection. They believe it is a donor antibody problem. The biopsy they did yesterday is promising. They said the kidney looks healthy and as long as it continues to get blood flow, it should pull through fine, once they get the rejection under control. They think the clotting is either a reaction to the heparin or something to do with the rejection. They are still running those tests. They are sending his blood and part of the tissue they took from the kidney to the organ bank in Boston so it can be compared to the sample from a week ago.
They have him on thymoglobulin for rejection and a new blood thinner I've never heard of, argatroban. He was too thin and needed 3 units of blood overnight and have been doing plasmapheresis on his existing blood trying to clear out the offending antibodies. He also was so thin he lost a lot of blood internally and they are going to do labs in a few and if his hemoglobin is still low he will be going back to surgery to fix the bleeding.
He had a port put in his neck yesterday during surgery for hemo. They did hemo last night and pulled off 1.4 liters of fluid but he's still 8 kilos over dry weight.
They told him that this was going to be a long ordeal and that he can throw in the towel anytime. But the kidney looks okay, so he is willing to keep trying. He is expected to be here up to FOUR WEEKS! I have no idea how I am going to handle that! His dad has been watching our dog, and he's having surgery on his hip Tuesday. I have no baby sitter for Saturdays so I can work OT at work, and I can't afford doggy daycare without OT. Tony also refuses to tell his mom and sister what's going on, so I can't exactly ask them for help, not that I'd want to anyway. So I'm trying hard not to get depressed or cry. I can't come up much during the week, if at all which kills me but with no help its sort of impossible.
They are in here taking his labs now. He is so weak it kills me :( I'll let y'all know how the labs turn out. I appreciate everyone's thoughts and support. It means a lot.
Shauna
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thanks so much for the update, been thinking of you.
so pleased Tony still has the Kidney & they are hopeful to treat the acute rejection.
so sorry you have no help tho, Can you not tell his mum & sister Would they want to help? Have they not contacted you to See how he's doing?
Praying for you all xx
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prayers comming from me. It's amazing what they can do and it sounds like they have the desire to do so and that your in good hands.. Wishing you well and keep us updated when ya can. wish we could help... :cuddle;
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:cuddle;
If his family isn't an option, it's time to start getting specific for help requests from EVERYONE you know. Ask at work, from school friends, anyone at all who knows you and Tony enough to have ever said, "If there's anything I can do, let me know..." Really, people want to help, but they don't want to intrude. Get a calendar, and start marking off days they could sit with Tony, babysit or dogsit. Explain that Tony doesn't need conversation so much as he just needs someone to spend a while making sure he has the nurses attention, and someone there to call you with updates on when he's going for tests, etc., so you don't worry. Reach out and ask for help, please.
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I'm so glad you started this thread, Shauna.
I agree with Jbeany wholeheartedly. Ask everyone you know to help. If you have neighbors that you don't know very well, but maybe to nod at, go knock on their door. Tell them what is going on and ask for help. Helping makes folks feel needed and they really, really do appreciate being asked. if you are a church-goer, let your church know.
Talk with your employer about arranging your work hours in ways that might make it easier on you.
I'm pulling for Tony and you. :2thumbsup;
:grouphug;
Aleta
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jbeany is right, time to ask for help. Ideally people should be asking you what you need - can I watch your son, bring you meals, walk/feed the dog? etc but they probably won't. Not because they don't want to be helpful, but what you're going through is probably outside their experience even though it seems like a no-brainer to us. People who've always been healthy seem to get a little weird around chronic and/or serious health problems. I hope they get the antibody problem solved, and that there is no reason for further surgery. Also glad Tony is willing to keep fighting. Try not to think about the time frame too much, you're only going to be able to do this one day at a time. (I know, I know, easier said...) Thanks for keeping the updates coming. I think of you often, will keep the prayers and positive thoughts coming. :cuddle;
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They took his blood at 2 and his hemoglobin dropped from a 10 to a 9. They are going to redraw at 5 and see. If its gone down he will go to surgery. If its remained stable then he's fine. They will do hemo again overnight I believe. He's super puffy and complaining of being nauseous. My parents just got here a little while ago with our son, but Tony is sleeping so I don't think he realizes what's going on. They haven't fed him on over 24 hours because they just don't know if he's going to have surgery or not. They definitely think its rejection and once they get the information from the biopsy they sent to Boston they can start giving Tony the same antibodies so the rejection will stop. Wish I could stay until the next labs but I'll need to take the insurgent (our son lol) home.
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^
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I am a half hour from home but im about to turn around and go back - they won't let Tony eat because they have not decided if he will need surgery and they are not going to check his labs for another FIVE hours. He has not eaten in over 48 hours and is complaining of nausea, feeling faint and a headache from being hungry. I'm going bullpoop angry. That seems cruel.
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It's not uncommon, though. I remember being annoyed at going several days without so much as IV nutrition when it became clear that I had a leak in my intestines. The IV food was always going to be started "tomorrow", and it was always, thank you Annie, a day away. Apparently, as long as you are getting IV saline, they just shrug and let you go hungry. If you take up arms and protest, you might be prepared to compromise on broth and/or jello.
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I am so hoping that things turn around. :cuddle; :flower;
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It's not uncommon, though. I remember being annoyed at going several days without so much as IV nutrition when it became clear that I had a leak in my intestines. The IV food was always going to be started "tomorrow", and it was always, thank you Annie, a day away. Apparently, as long as you are getting IV saline, they just shrug and let you go hungry. If you take up arms and protest, you might be prepared to compromise on broth and/or jello.
That's half the problem - he is NOT getting very much IV saline at all because he's not urinating and retaining everything. They had to do emergency hemo this morning to remove fluid and bring his potassium down. So he's only getting I think 50ml/hour of saline to keep the line open. That's it. He's angry because he's nauseous, light headed and whatnot because he's starving. They have no idea how low his blood sugar really is because he's on the steroids for the rejection, but I bet if he wasn't it would be evident that he's starving. More like wasting. He's 140lbs and I lifted him to reposition him in the bed this afternoon because he couldn't do it himself. He can't even walk to the bathroom, they had to lift him onto the commode. :( I think he'd be thrilled with jello and broth at this point.
Shauna - please contact the Kidney Transplant/Dialysis Association (KT/DA). This all volunteer organization has been helping patients and families in the NE area for 40+ years. They also offer a limited financial aid program (up to $300 p/year) that you/Tony might qualify because of the additional expenses you are having.
www.ktda.org
The KT/DA officers and board members are listed with contact info. I'm familiar with George Arena and Michel Lisieski, both long-term members and former KT/DA presidents. I'm sure both wouldn't mind receiving a call from you.
Now that I am home and on a regular computer, I am going to check that site out between loads of laundry and cleaning the house from Thursday nights pizza party. And find a place for the Mickey Mouse balloon our son picked out for Daddy, because it floating around the living room is seriously giving me the creeps. Thanks for the info!
I really just cannot wait to have everything fixed so life can be semi normal again. As much as I hated dialysis, the boxes etc, I'd do anything right now to have him home so I can have company and someone to keep an eye on the little guy so I can do errands etc.
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Shauna, wow, what an exhausting ride you're on.
OK, just my unsolicited advice, but unless Tony has a bad history with his mother and sister, I would tell them so that you can get their help - even if it's only mutual support it is vital that you have real people in front of you that can give you a hug and hold your hand through all of this - but also because I think they, and especially his mother, have a right to know. As one mom of boys to another, I would be off-the-rails with fury if this were happening to my son and I was not told the whole story, and chances are you would feel the same if it were your child. Not to mention that I think I would direct all of my resentment toward my daughter-in-law for not understanding that there are certain times when you have to defy your spouse's wishes. And before anyone calls me a hypocrite for not telling my own parents about my transplant, I do have that horrible history, and my support person panicked and did tell them and it turned out to be one of the smartest decisions that person made (and he had to make a lot of smart decisions as he was in way over his head because we had no idea any of this would be as hard as it was).
Enough about me, but please consider that trying to keep his mother and sister in the dark may do more harm than good, and ultimately could really damage your relationship with them.
Wow, I really hope they can start giving you some concrete answers soon. You poor thing. I love jbeany's and Aleta's advice - time to tell the world and accept any offer of help you can get.
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Cariad - there is a lot of bad blood between her and I going back to his first transplant. After his brother was tested and couldn't donate (I think he asked for a "medical reason" to get out of it), it came out that she had told the transplant team that I was a drug addict during the first family meeting. His brother actually wrote her a scathing email asking her why she would let her mental illness get in the way of Tony's "last best hope" at a kidney. (She is in fact bipolar). So I avoid her like the plague and have since that day because due to her unfounded comment, I had to undergo a battery of additional (and somewhat humiliating) testing before they'd consider me. You just don't say something like that if you don't have facts (she was basing it on 3rd party reports that were mostly untrue and greatly exaggerated). As I told the tx team then, it was nothing more than "youthful experimentation" which in the end did no harm as they were able to use my kidney.
Tony doesn't like her because she basically walked out on him when he was small, like 5ish. When his parents divorced his dad did the right thing and left her the house with the boys and said you get it so long as you pay for it. After about a year she couldn't "handle" it and called him and left. She moved over an hour away and never came down to see them. The story was she couldn't for a number of reasons, but my thought is hell nor high water would keep me from my son if for some reason he wasn't with me. And a kid that young doesn't get adult issues, they just know their mom isn't there anymore. Then from what has come out in therapy, Tony said she would pop back into his life and be consistent for a few weeks/months and then suddenly fall of the Earth again just when he was starting to get close, and she'd be gone for months, and that was a cycle that went on for many years. To this day she never comes to visit even though she visits his sister who lives 5 minutes away at least once a month. We've told her numerous times that we are always here and she can just call and stop by, but she never does. The only time she shows up is when he's "sick" (read in the hospital). She never came to help when he was on dialysis, never offered to help me with our son when Tony wasn't feeling well from ESRD. But she magically appears by his bedside whenever he is in the hospital.
For instance, on Thursday when they told us to go to the ER, I said I was going to need help with Marcus (she was here when we got the call). She wanted to go get him from daycare at noon, during nap and watch him. I said no, I need help at 5. At which point she left, without the car seat and took off. I would have gladly put it in her car so long as she got him at 5! I paid for daycare already, don't want to waste money but since it couldn't be at that moment, she didn't want to do it. Then of course at 5 she wanted to help again, but I was in the ER and she had no way to get the car seat.
I told Tony he needed to call her, and I have sent her some texts, but I am NOT about to get involved in a nuclear meltdown because he had surgery, almost lost the kidney etc. I am NOT about to take the brunt of her wrath because he chose not to call. He doesn't like that she plays martyr and shows up when he's in the hospital when he could use her support all the time, and he still feels abandoned by her. He hasn't told his sister because as he put it "they are a package deal" and if his sister knows everything she spills to the mom, and then they both end up at his bedside. And he feels they have a way of blowing things way out of proportion, and their fretting makes him on edge. His dad is no peach, but in Tony's view growing up his dad provided food, clothing, shelter and consistency so that's why he called him before surgery and not her. (and he's too self centered to worry too much about Tony, and he doesn't understand). The only reason I think he tolerates me is because I am consistent. Even when we had "issues" after the first transplant and he hurt me greatly, I still stuck around because I promised him from day 1 that I would go through this with him, and after knowing his history and our child aside, I have never been able to walk away because of that promise, as tough as things have been.
So that's the insight into Tony's psyche and why I won't make the call. I know I am already being blamed for it, but it is on record at the hospital that I have told the nurses he needs to call, the doctors that he needs to call and his dad knows he needs to call and I've told him that. It's not my place and Tony has this way of trying to push the hard stuff off on me and others (again, part of his growing up I think). He needs to handle the hard stuff every once in awhile.
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Oh yes, I should also mention I called the nurse around 10pm, and she said they had snuck him a half cracker and he ate a few bites and said he felt worse! They gave him a little pep talk and told him how tomorrow they should know exactly what they are up against and change the plan of attack to address the offending antibodies and get things moving forward, and once they knew if his hemoglobin was stable, they could feed him, so likely in the morning. Then she gave him a shot of benadryl when she hooked him up to the thymoglobulin and he dozed off and hasn't made a peep since. Hopefully he won't be giving me or her a hard time for the rest of the evening.
She said she'd call me if they had to take him into surgery, or if he needed emergency hemo as he did this morning when his potassium shot up. Otherwise I will check in on my way to work to see how things are going.
I am just praying that they can get everything sorted out and get the kidney up and running again so his hope returns!
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No results yet on the biopsy and blood samples sent to Boston so today's plan is to stay the course with plasmapheresis and HD. They may send him to have a chest cath put in for HD access since the emergency one in his neck hurts him. Fingers crossed still for good news from Boston
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Oh, Shauna! I am so sorry I dredged up those awful memories with my suggestion. I could not tell from what I'd read of your posts if you were not telling the mother to try to spare her worry, or if there was another reason altogether. I have experience with bipolar relations and it is draining and often infuriating. Telling the transplant team that you're a drug addict? That is beyond comprehension, really unforgivable!
Sorry there is not any helpful news yet, but I still have fingers crossed for all of you. :grouphug; :grouphug; :grouphug;
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Thinking of Tony and you.... What an ordeal!
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We're all thinking of you both. The whole situation is really tough. I hope the doctors can help him soon.
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Cariad it's no biggie for me, I just shake my head. I feel bad for her that her son doesn't want to see her, but I also understand the depths of his issues more than anyone else because I'm the only person he's gotten that close to. And I see his hurt and frustration when she comes and goes. When he asks her to watch our son or help him and she says she can't, he still looks sad. I've had him extend the olive branch tons of times just because I want her to spend time with her grandson but now it's just getting me so frustrated that I will wait and take cues from him on this, and if doesn't want her up at the hospital or involved I'll stand by his choice and not push it, though I still mention he should call and check in, but I won't nag about it like I might have done before.
And there is still no other update aside from this morning. I hate hurry up and wait!
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I am thinking of you and, as everybody else, hoping for some good news. I admire your strength. Hang in there, it has to get better! :pray;
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No offense to men out there - but by golly I swear most men are the biggest babies on Earth!
I get a call from Tony tonight where he is claiming he has bed sores. He says they are starving him. He can't move his legs because they are so swollen and they wouldn't move him out of the bed today. And they won't do anything about the swelling. He wants to come home. He was upset and crying and generally breaking my heart. I told him these few days/weeks of discomfort will be nothing compared to the several years of life with a kidney, or the many years of discomfort on hemo. This is minor compared to what could be, and worth it compared to what the outcome will hopefully be.
So I get off the phone with him and call the nurse. They have him on a renal diet, and whatever he ordered (stuffed pepper maybe?) he can't have, so they gave him salmon. Which he doesn't like. So I told the nurse that he doesn't care for fish really, and if they have to give him an alternate menu item, make sure it isn't the fish. If he orders the fish, that's because he actually is in the "mood" for it and then let him have at it, but don't force it on him.
Then I asked about the bed sores and itchy back. She said they had washed him and put lotion on him (he has chronic dry skin) and he had no bed sores. He's on an alternating pressure mattress which prevents bed sores. I told him this. Twice. As did my mom. But apparently he still thinks he has them. ::)
Then I asked about the dialysis. He has so much fluid, and the thymoglobulin makes his blood pressure low, that they can't go and pull all of it off at once, they have to do it gradual. And they have to monitor his pressure because the new kidney needs the blood pressure good and stable so it can function. I said okay, I get that, that's fine. But pull please make sure they take off as much as they can safely per session, because the fact he can't move on his own is really upsetting to him. And I told her how he said it was every other day, and she said no, he will have HD again tomorrow (I had assumed as much, but I figured I'd double check just to make sure). And they did move him from the bed to the chair, so I know he's changed positions. His butt probably hurts from being so swollen, I think.
They said the results from Boston will hopefully be in tomorrow at the latest. Crossing my fingers that this is true so they can stop the rejection with the right antibodies and get him on the road to being healthy. I am also going to check with the nurses to see if we can get him into PT or something before he comes home so he can regain some of his strength.
And I on the other hand may go crazy. Realized today that I have NO daycare for our son on Weds through Friday next week. I am off on Wednesday anyway, but the other 2 days I don't have off, and I don't have extra time to take off, so it may be unpaid. :( We also have 2 weeks worth of disgusting garbage in the bed of his truck that needs to go to the dump, but the darn dump is only open from 730 - 330 and I am work those hours. Ugh. Only good thing today was I found a new doggy daycare on my way to work and not 15 minutes in the opposite direction of the baby's daycare and my job, so that was good. But I am not kidding when I say these 4 weeks will either kill me or make me insane!
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oh boy I'm so sorry to read all of this. Poor guy sounds like he's so desperately frustrated and fearful of the failure of the tx all combined into one - all that fluid can only come off gradually but they know as much as the rest of us how vital it is to come off - hopefully as that comes off the swelling will reduce and he will feel more able to move around - I hope so... but I really hope the results can give them a solid answer and plan of action to get this all under control and him back to a situation that works.
My sister has just spent a few weeks in hospital with a fairly serious condition and her perspective and complaints have been how nobody listens to her and she can't do this and that and she's ignored and all the rest.. then you hear the other side of the story and the truth is probably somewhere in the middle. I wonder if the bed sores concern is an example of all the worries and concerns piling up and making him feel that way as opposed to what the nursing staff report?
Either way it's so difficult for you :( I'm so sorry this is far from smooth - this kind of thing is supposed to work out will and I have all my bits crossed that it will still work out - as you say 3-4 weeks of this kind of discomfort will be worth it totally if the kidney can be stabalised and get going for him and give him years (hopefuly!) of more normal living - and we all want that for Tony.
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I can understand his frustration with the extra fluid. I gained 60 pounds of fluid with my complications. Nope, I couldn't move either. My docs wouldn't even do D or give me lasix - they wanted my kidney to shift it off. It took months.
Not being able to move himself is probably contributing to the feeling he's getting bedsores. The bum does go numb, even with the funky mattress. Remind him that the nurses will help him shift from hip to hip and up and down in the bed. He just has to remember to ask.
Also, remember he's on some funky drugs, and they are messing with his mood like crazy. Prednisone makes everyone a little over the top, and who knows what the anti-rejection mess is doing to him.
Hang in there!
:cuddle;
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Also, remember he's on some funky drugs, and they are messing with his mood like crazy. Prednisone makes everyone a little over the top, and who knows what the anti-rejection mess is doing to him.
Good point!
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Sorry for such a late update today! Tuesday is my standing appt at the salon to get my nails done. Tonight I got to enjoy my bi-weekly "me" time with a two year old in my lap and my beagle at my feet (yes, they let me bring the dog inside so he wouldn't sit in the car and bark the whole time). I was also 15 minutes late to my appt because I had to pick everyone up, and I couldn't even have her paint me tonight because I would have ruined them as soon as I tried to put everyone in the car. Just got done painting them myself, and it looks like a 5 year old did it. *sigh* ;D I just keep telling myself this will get easier, it will get better...
I didn't even think about what all the meds might be doing to his mental status. Oops I feel bad for thinking he was being a wussbag. But I know this must be very hard for him not being near our son or in the comfort of his home. As crazy as things are for me, I at least get our son every night and to sleep in my own bed.
Anyway, Tony had hemo last night and they took off another 1.8 liters. Then around noon they took him down to get a cath in his chest wall instead of his neck so he will be more comfortable during hemo treatments.
Then he called me as I was heading out of work. The transplant head came down to see him. They got the results back from Boston. Tony's body is obviously fighting the kidney. They did find an antibody in the sample from Saturday that was not in the original 48 hour crossmatch. I know Tony got a unit of blood during the transplant, so I wonder if the antibody came from that (I should write that down and call and ask in the morning). They still believe the kidney is viable. Their plan of action is to treat this like any other cross match positive donor/recipient paring - plasmapheresis and immunosupressants (currently thymoglobulin, cellcept and solu-medrol). Only difference is the kidney is already IN Tony. But the Doctor said the kidney is 10x smarter than us - as soon as it started being attacked it shut itself down to protect itself, and the Doctor is confident that as long as it has adequate blood flow, it will be fine.
He said they are going to stay this current course for 1 week. There is another, stronger immunosupressant for situations like this, eculizumab, which they may decide to use instead. But it makes you more susceptible to meningitis, so they don't want to use it unless there is no progress with the current plan. He did say that the meningitis risk would be slightly lower because he'd also be on antibiotics which is part of their post tx protocol. He said he believes the plasmapheresis will work, it just may take a little longer than it would if they used the other drug.
So when Tony called to tell me all of this, he sounded pretty happy. I think he was just relieved to hear *something* new. They are also undecided on whether the clotting and reduced blood flow is part of all of this. They are still thinking and leaning toward it being heparin induced thrombocytopenia or something to do with arterial cuts, as he has 3 clotted fistulas and he clotted my kidney within hours.
So I am just trying to stay positive, focus on their optimism and not think about all the stress at home - organizing daycare, finding weekend babysitter, trying to figure out when I could possibly go up to visit since I don't have a babysitter etc. As much as he makes me crazy when he's here, I do sort of miss having company that can speak in full, coherent sentences and doesn't hog the entire bed. And I am going to keep praying for a quick and successful outcome to all of this. I hope to escape with my sanity!
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:cuddle;
Men are wimps when they are sick though! ;D
Having a plan of action, even if you don't know if it will work, is sooooo much better than not knowing anything! Hope this works for him.
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And the roller coaster ride continues! At least they seem to have a plan, and an alternative med if this one doesn't do the trick. Maybe things will smooth out a little on the medical front. Now you just need to figure out the messy, stressful details of home an work!(sigh... :() I honestly don't know how you keep from screaming. You're doing an amazing job of keeping everything together. I know your son must miss having Daddy home and it's good that he has been able to be with you to reassure him that while everything may be confusing right now they are going to be okay. Hang in there, I know you're tired, worried and stressed, but it will get better. I'll keep sending positive thoughts and prayers your way. :cuddle;
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thinking of you all & praying the treatment works to Stop the rejection. Hope you get some sleep too x
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They are giving him another transfusion today. His hemoglobin was 5.2. I wonder how all these transfusions may effect his antibodies... I am going to call up there in a few and ask I think. He said they told him the low hemaglobin is caused in part by the anti rejection med and also by HD. He still says he's wicked puffy but the nurses told me with te chest tube it will be easier for the fluid to be pulled off. I guess they can pull more blood through the chest port than they could through the neck cath.
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Oh my goodness. I'm so sorry to hear all of this!! I will keep Tony and you and your beautiful little family in my thoughts and prayers! :grouphug;
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Thinking of you both Shauna. *huggles*
(And men ARE wimps, bless them! ... But I actually think he's being very unwimpish right now, and so are you, and I really hope that in a few months you'll be ale to look back on these first few weeks and have an insane chuckle occasionally.)
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On my way to the hospital. Nurse called at 4. Ultrasound is showing no blood flow. Taking him to surgery for removal. Praying that the ultrasound is wrong. Praying for a miracle because if it clotted it's hemo or death.... No possible transplant ever again. I'm completely devastated but I'm not going to cry. Just praying. Im still an hour away. Wish I could fly. Wish I could fix this. He's devestated I know he didnt even want to talk to me. I understand he feels like this is the end.
Thank you all for your support and prayers. Heaven knows I need that now more than ever. I'll keep you all posted.
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Oh, Shauna! I'm devastated for you. Hoping right along with you that the doctors have another trick up their sleeves, but if not, it will be hemo. Tony needs to hang in there until science can offer him another option. Many are working on it, he just needs to stay strong until the next big thing arrives. Hugs and more hugs.
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:grouphug; :grouphug; :grouphug;
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Oh, I am so incredibly sorry to hear this. I have been following your news closely and was hoping that it would work out for your husband.
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I'm so sorry. That is really bad news. Allow yourself to cry if you need to. I'm sure it's very overwhelming.
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I'm in the waiting room waiting to see the doctor. I'm usually calm in these situations but 3 times in less than 2 weeks? My nerves are shot! I can't take much more!!! He's been done supposedly for 45 minutes and they checked to see if I was here. I may need to go t the bar after this!! I got a long drive home still too, and a little boy who is freaked out because daddy hasnt been there for bedtime for 2 weeks and now mommy is gone too :(
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No more kidney. I'll need to talk about this when I get home and I'll elaborate. His body just doesn't want him to live.
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I am so sorry! My heart goes out to you all. :grouphug;
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Oh, God...I am so sorry. :cuddle; I just don't know what more to say that can heal your heart.
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So So Sorry to hear this. thinking of you all xxx
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Shauna, I am so sorry to hear all of this. I wish we could all be there for you to give you hugs and support.
:grouphug;
KarenInWA
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No more kidney. I'll need to talk about this when I get home and I'll elaborate. His body just doesn't want him to live.
Keep us updated only when you feel like it. Like Karen said, I wish we could be closer so that we could be of more support.
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:grouphug; :grouphug; :grouphug;
Wish there was more we could do. :cuddle;
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Oh Shauna, I'm heartbroken for you both. Praying for peace of mind and comfort for you. :cuddle;
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Shauna sweet ... I'm so sorry, for both of you. How completely crushing and heartbreaking. I'm sorry I can't offer more than *huggles* but I am thinking of you all.
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So sorry. :( Can you possibly take FMLA leave in order to give yourself some time with your family and allow yourself to start healing from this trauma?
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My heart is breaking for you. Thank you for keeping us updated, but don't let us add to your burden. Like the others I wish I could be there to physically help. My only advice, breathe, just breathe and try to only think about the next immediate thing, not beyond. Praying for you!
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It was a HLA antibody rejection. Despite the thymoglobulin and other meds, the plasmapheresis they couldn't stop them or get them all out in time to save it. The antibody was in response to the organ. They reviewed his labs from early June and he didn't have them then. I asked if they could have come from the unit of blood he got in the original surgery but they said it was unlikely because he was already on immunosuppressant meds at that time. I really don't know what he's going to do. I'm sure I'll survive either way. I don't think anyone has died from crushed hope and broken dreams yet.
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:grouphug;
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I am so sorry this has happened. I hope you have been able to find some help on the home front...
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I also found out today that he didn't have this antibody when he left the hospital last Tuesday to come home. So it cropped up between when we left on Tuesday and late Wednesday night/Thursday noonish. I saw the Social Worker today and she said she had ran into the surgeon on her way up to see us. She said that he wasn't counting out another kidney at this time - they want to wait for the pathology reports, the tissue sample results that they sent to the lab in Boston. They want to know what particular antibody it was, so they can narrow down where it came from, and figure out how to stop this from happening again. If there is a fix, they will relist him. They also told us that since he rejected, if they relist him within 30 days, he can keep all of his time. He obviously doesn't want to try it again anytime soon, but she said they could relist him and put him on a hold like a medical hold for a few months until he is healed from this go round. That's the piece of hope I am holding onto, albeit small, but I am not going to count out that possibility. I think that's the only thing that is keeping me going right now...
So then I ask Tony in the presence of the Social Worker if he has told his parents. He said no. We discussed on ways to tell his dad, who is currently hospitalized in a different hospital due to a hip replacement issue. The social worker suggested calling the nurse at the hospital and letting them know so they could be present when his dad took the call, just so he'd have someone there to comfort him. I called the nurse and explained the situation, she was on until 7:30 so I told Tony he had to call before then. The nurses were aware of this too. All he had to do was call up and talk to his dads nurse, and she would go give him some extra pain meds because as she put it "he has some strong feelings and opinions on this matter" Yeah, you could say that.
I called Tony at 745 flipping out. I needed to go to the store. I needed to bring my child who didn't nap today and the dog with me. Child did not want to go. Had a complete fit wanting daddy, not wanting to go with mommy, telling me he only listens to daddy. I told Tony that he needed to tell his family because I NEED their help. Even if it's just them coming over here after Marcus is in bed so I can make a quick run to the store. What takes me 30 minutes solo takes me 2x as long with child. So he called his sister. I had finally convinced Marcus to come with me and she pulls in the driveway, so he stays here with her. While I'm talking to her, Tony's dad calls my phone. I ignore it and when I listen to the voicemail he sounds sad, said he was just checking in to see how I am doing. So I figured Tony called him too.
On my way back from the store I call him. He asked how I was doing etc, and I said I am exhausted, and that it's just going to get worse when I have to bring Tony to hemo 3x a week. He said "Why is he coming home? Oh... does he still have the kidney?" CRAP! So then I had to tell him what happened, explain the rejection thing and bear the brunt of his yelling and tears. Not very pleased about that. I am hoping he was still on his bonus button pain medication so he could hit it a few times and forget what I told him...
I truly have no idea what I am going to do if they send Tony home on Sunday like they suggested they might today. He doesn't have in center hemo set up. I called his PD nurse and she said that it could take a few days to get that in place. So he might go a number of days without dialysis, which won't be very good for either of us. And then I am going to have to drive him to dialysis 3x a week, and when he went the last time, he used to have to be there VERY early. Which means I will have to wake up the baby and take him with us. And then come home, get ready, bring the baby to daycare, dog to daycare and then go to work myself, and then when he's done LEAVE work to go get him. Since I am the only one working, I'd like to keep my job... In addition to the rides up to the transplant center for follow up and everything else. I can't do it. I can't keep up as is, I can't add any more to what I do now. :(
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What can I say?. I am so, very, very sorry to hear this. :'(
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My heart hurts so much for you both. This is awful. I keep crying, realizing how devastated you must be. Your plate is very full and along with others, I wish I could be of some help. I'll be keeping you both in my thoughts and prayers. I don't know why things happen when it should have all gone smoothly. A good reminder that a transplant is a major event and not as easy as some people think. I am sorry. I'll be saying healing prayers for all of you. :cuddle; :cuddle; :cuddle;
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I haven't really cried since they told me he lost it. I am more in disbelief trying to figure out what went wrong. If he didn't have the antibody at the beginning of June, and he didn't have it when he left the hospital, how come or why did it crop up so quickly when he got home?
And if the kidney was healthy and "pink" on Saturday and they had him on all sorts of meds to stop antibodies and the plasmapheresis, why did things all of a sudden change? They said "As long as the kidney has blood flow, it will be fine" Obviously that was not the case.
I just don't understand. And I don't understand why he can't catch a break either. Sometimes I think the alternative to dialysis would be better for him, it would end the suffering and heartache of never getting things right... He's never had a normal life because he's had this his whole life, and he keeps getting promised things will improve (you'll feel better when you start dialysis, you'll like PD better and feel better too, the next transplant will work etc) and every time it's all wrong.
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i hate to sound so pessimestic, but i think they say those things, so u will keep striving for that light way wayway down at the end of the tunnel. its kinda like things will get nbetter but u gotta get through this rough patch now. idk that just what i think. i hope u guys do catch a break, this is all so heartbreaking to read. eventually it has to get better
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i hate to sound so pessimestic, but i think they say those things, so u will keep striving for that light way wayway down at the end of the tunnel. its kinda like things will get nbetter but u gotta get through this rough patch now. idk that just what i think. i hope u guys do catch a break, this is all so heartbreaking to read. eventually it has to get better
Like I said, seriously wondering if the dialysis alternative would be better. Not that I want that, but really? How many times can you break someones spirit?
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this has been a hard read. Im so so sorry for it all. I know' that' kind of exhaustion and you cant continue that for yourself either. I can do nothing but offer prayers. Im awfuly sorry it's all happened like this when it should have been a beautiful ending :( I do wish for you that something good comes from it, and that and there is a turnaround in the road REAL soon. Bless you and give you rest... :grouphug;
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Shauna I'm so so Sorry for you all I just have no words. You are all in my thoughts & prayers.
Is there anyone who can help you Out With your son, Shopping & taking Tony to hemo? Friends or neighbours ? You're doing So much with so much on y our plate. Do the hospital have a transport Service For those Who have no one to take them or cant drive themselves? We do in UK & they pick patients up from their homes & take them to hospitcl.
take care xx
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What an overwhelming experience. I don't even want to imagine what you must be feeling. As much as I know you love your son, and as much as I know he is a constant reminder that you have to just keep on going for his sake, I also know that at this moment in time, having to attend to his needs just makes things so much more difficult for you. I hope you can find some help.
Quality of life is such a difficult thing to quantify, but in the end, that is something that Tony will decide for himself. You do not have to worry about that. I hope he will be able to find some satisfaction in life on hemo. Many people do, but it is by no means an easy life. I saw it with my mom, but then again, she didn't live with these sorts of health issues for as many years as Tony.
You can see that you and your family are in our prayers, and this is the place to vent away if it helps. Are you pretty confident in the quality of care that Tony has been receiving? If you are, that is really a good thing.
You are rarely out of my mind. :cuddle;
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I am so upset by this, it's just so hard to believe how this is going.
I hope you can get a friend or family member to give you some support.
And of course Tony should not be sent home without a dialysis plan.
Thinking of you both all the time :cuddle; :cuddle; :cuddle;
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I am so sorry. Now this may be too soon, but I hope when you are ready you can each get some individual counseling. There's something called the loss of the imagined future. You need to allow yourselves to grieve that loss. I'm sure right now it's all hard to fathom and cope with. And you're so busy with day to day problems. But eventually you will have time with your thoughts and I hope you will let someone help you.
I feel so bad for you both. Please take care of yourself as well as taking care of others.
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Well at this point there isn't a ton to update, but I know so many of you have us in your thoughts and prayers, and I am very grateful for that. So I figured I'd give you a mostly uneventful update. (That and I am incredibly bored and lonely after the little guy goes to bed. Nobody wants to hang out with me).
I had not heard from Tony all day. Marcus and I talked to him this morning on the phone, and I sent him some texts and didn't hear back. He has been moved from the ISCU to a regular floor, and I was worried that if something happened the nurses wouldn't call me. So I called up to the nurse and he said Tony was awake, and connected me.
Hemo has removed most of Tony's swelling. But his left arm is still really swollen and hurts A LOT. He's had like 12mg of dilaudid orally in the last 2 hours. They did a dopplar on it, and the pulses are good so they don't think it's a clot or anything. The IV nurse was just in about 20 minutes ago checking his PICC line because he said the pain is starting from the PICC line and going down his arm. The IV nurse said everything looked good, so I guess the plan is to do an ultrasound tomorrow. I don't think they are going to let him go home until they figure out what is causing the pain and get it under control, because he said it hurts worse today than it did yesterday.
On Friday the social worker told me they want to move Tony to a swing bed in another hospital. She said most of these units are North and West of us, and the closest ones are still an hour away. Our upstairs neighbor is an ICU nurse, and I was telling her about it, and she called up to the physical rehab floor at her hospital and they could take him on that floor (the social worker said they were worried about his physical conditioning after so many surgeries and being in bed so long, he needs reconditioning mostly as he can still feed himself and wipe his own bum) and bring him down to do dialysis no problem. Tony said that's how he's doing his hemo now, so I am going to lobby for that. The 2 closest swing bed units are still an hour away from us, so that wouldn't be the greatest. If he went to the hospital my neighbor works at, I could go see him on lunch as it's only 5 min away from my office, and Marcus and I could go have dinner with him every night. It would be much better for his mental status, I think.
While talking to him, I forget what we were talking about but he started crying saying how much he missed us. :( Made me really sad. I was debating going tomorrow because it's a 3 hour round trip ride, and that's a lot of riding for a 2 year old, but now I am going to make sure we go. I'll pack the ipad, some toys, crayons etc and we can sit in the family room they have there so we can contain our nutty 2 year old and hang out together for awhile. It's supposed to be ridiculously hot tomorrow, so sitting in an air conditioned car and an air conditioned hospital wouldn't be the worst thing ever. And if the 2 year old gets antsy, I can take him down to the mall or whatever they call the 3rd floor where they have all the food, bank and shops and let him run the corridor.
Oh! Tony was told that the preliminary pathology came back - there were NO clots in the kidney at all. Which is good news! Something else had to happen, so there is still hope that they can figure out what, and give him another kidney at some point down the road. One of their theories was that this had something to do with his clotting issue, and if that was the case, he'd be ineligible for another shot because there would be no way to keep it from clotting off. I guess now they have to get the rest of the results back for the other test they are doing to figure out what antibodies attacked it, where they came from, and if they can prevent this from happening again. So I am not going to lose all hope until they tell me for sure that all hope is lost. The social worker said the docs are devastated and shocked and also determined at this point. Hopefully I can speak with them tomorrow.
So that's the newest news. Not thrilling but not as bad as it has been. And even though he does annoy me when he's here, like you know when I'm reading a book on my kindle in plain site, and he interrupts me 10x to tell me about various news stories he's reading on his computer that I don't really care about, I do miss having company. And I don't sleep good when I'm alone. If I thought he wouldn't be a burden if he came home right now, I'd push him to ask to get out ASAP, but he's not strong enough to *not* need my help when he's here as of now, and I'm overwhelmed as is.
Again, thanks everyone for thinking of us. With his family being so disengaged with me, and my family so far away, I feel like I have nobody to talk to, and talking about it sort of makes me feel a little better. So thanks for listening and being supportive, I appreciate it!!
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:grouphug;
I hope they can get him back on the list - and in a hospital closer to you, too.
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I hope they can and are willing to relist him too. I don't know if you guys knew this, but I guess if they get him relisted within 30 days, even if he is on a medical hold, he will keep all his wait time? He wants to wait at least 6 months before he tries again, IF he can try again.
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I wish this didn't have to be so hard for him, and I do not understand why they don't know what happened to the kidney.
I feel so sad for you too, poor girl, this is a huge thing to go through - I think you are handling it admirably, I think I would be screaming at everyone - ranting like mad.
I do believe that because the kidney didn't work, he retains all his wait time. Be sure someone confirms this.
I hope your Sunday turns out ok, toddler and all - yes, maybe being in A/C will be ok. Big HUGS coming your way! :grouphug;
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I'm sorry you and Tony need to go through this. :'(
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Oh, Shauna. :'(
I've been without a computer for a few days and it makes me so sad to read this. I thought about you often over the weekend. I cannot even begin to imagine what you are going through. I am so very, very sorry.
Aleta
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Went up there earlier with Marcus. The doctor that was on the floor checking in knew nothing of his case, so she called the doctor that I was told would be in (one of the surgeons). I apparently need to go up there tomorrow because they are considering discharging him. I expressed my concerns about his physical ability to go home. I am going to call the care manager on my way to work to again express my concerns. Yes, he is getting up and walking, using the toilet himself and eating, but I don't like the idea of him being here alone. And he needs to be able to climb the stairs into the house. They also have to work out his hemo schedule. I know the center can take him, I've discussed with them, but it's just a matter of time and getting his paperwork in.
I also asked if they had a plan for a more permanent access for hemo. The Dr. said they would need to do some vein mapping to see what they can do in terms of fistulas or grafts, which is great, but he won't be able to use it for several months. I really don't like the chest cath at all. Makes me nervous with the 2 year old.
I am still praying daily that they can sort out what went wrong, and relist him and that the 3rd time will really be the charm.
I wish this didn't have to be so hard for him, and I do not understand why they don't know what happened to the kidney.
They do sort of know what happened - it rejected. The way he explained it to me was that this antibody attacked the small vessels inside the kidney that do the actual cleaning. The question that they have is where the heck did this antibody come from?? When they did the initial cross match on Tony's blood from June 11 with the donor, everything was negative. When they did it again on the 23rd, using his blood from both the 19th (day of discharge) and the 23rd, they found an anti-HLA antibody in the blood on the 23rd only. It was not there the day he went home or the original cross match blood sample. So what they are trying to figure out, or hoping to figure out, is where this antibody came from - did it come from the donor blood they gave him in surgery (though they told me they doubt this because at the time he would have already been on immunosupressants) and all the donor blood and plasma they gave him Friday night into Saturday, is it something his body produced in response to the kidney, or is it related to his clotting issue (which they doubt).
What I wonder, and I am not sure how to ask, is could it be related to what the donor died from? I browsed the obituaries for the state that Tuesday as it was the end of Bike Week and there were a bunch of awful accidents and I came across a 43 yo male who died the 15th. Of bone cancer. I shared this info with my mom when I found it, and she brought it up when they removed the kidney. I just don't know if it's something I can ask...
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I don't think that someone who had died of bone cancer could/would have been acceptable as a donor. By the way, the antibody is what a person's own body produces in response to a foreign antigen. HLA tests are looking at antigens. Therefore Tony's own body produced the antibody, so the question is, where did the antigen come from?
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Correct it attacked in response to the antigen from somewhere.
From what I read about this one man that died the night of the transplant, he had bone cancer in his skull. From what I looked up after I read that, brain cancer and cancer that has not metastasized to any other organ does not disqualify you from being a donor. But it's all connected to the lymphatic system so who knows what was being circulated in the donors body at time of death. He did not have a traumatic or cardiac death from what we were told. Just makes me wonder. I so wish we could have prevented my kidney from failing. I knew where it had been and that I took good care of it, the whole mystery of a deceased donor sort of bothers me. I wish they could tell you more about the person medically before you make a decision.
Hopefully he's coming home today. He had his dialysis this morning and I guess they are waiting on a PT consult before they will say for sure he's being discharged to make sure he's able to care for himself once home. I have to leave work in a bit to head up.
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Was Tony on an Expanded Criteria Donor (ECD) list?
8)
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No he's too young. They want him to have an under 45 kidney, or would prefer it.
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Even if the person with bone cancer was the donor, there is no reason that this would have any link with the rejection episode.
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Even if the person with bone cancer was the donor, there is no reason that this would have any link with the rejection episode.
Probably, but you know, when I sit here all night and ponder how this antibody showed up between discharge and his first follow up, tons of things go through my mind.
Tony did come home today. He weighs about 30lbs more than he did when he went up there on the 22nd because he had 4 liters of fluid on the Thursday, then when the readmitted him on the 23rd they started the IV's of saline, he wasn't peeing, and they didn't start dialysis until Monday or Tuesday last week. The hemo clinic nurses at the hospital did dialysis on him this morning, but his body wasn't giving up the fluid, so they reduced the amount they took off. They had planned on hooking him up for 2 hours tomorrow to just draw fluid, but the transplant doctors discharged him. His next treatment isn't until Wednesday at the local clinic, but he's so swollen he can hardly walk. He said his feet squish when he walks, and his feet and ankles put my pregnancy swelling to shame. I am going to call the clinic and raise hell tomorrow to get him in for a few hours to try to pull off the fluid. He is okay with this too, because he is so miserable.
I also have to call the transplant people tomorrow too. They discharged him on some new meds, but also on all of the post tx discharge meds minus the immunosupressants. For some reason, this doesn't seem right to me. They also added another blood pressure medication, lisinopril, which we know in Tony has been known to cause elevated potassium. When he was on PD, this wouldn't have been a concern, but his potassium is on the high side of normal, and I don't know if adding lisinopril is a good idea. He was taken off of it while on hemo before because they couldn't get his potassium down. They never even mentioned it to him while in the hospital, it was just on the discharge sheet. He said they did not give it to him in the hospital.
And I get the dumbass of the day award. They told us they had sent the new medications to the pharmacy. I was like okay, so I swing by CVS on my way home, and they don't have them. That's because they sent the medications to THEIR pharmacy, an hour and a half away (86.4 miles in case you're interested) :banghead; So if he's supposed to be on all these new meds, I need to figure out how to get them transferred tomorrow, or take a leisurely drive after work.
I am betting $20 though that we end up back at the hospital this week. They told us that if his JP drain puts out more than 300ml in 24 hours or if he spikes a fever or has any other sign of infection to call. Well guess what? Since we got home around 7, I've drained over 150ml of fluid from the JP and he's complaining he is cold and it's 76 and sticky in here. I checked his temp and it's barely 99, so we shall see...
I swear I can't catch a break. I figured these next few weeks would be tough while he adjusts to hemo and can't drive, but he was told that he has to avoid public places for SIX BLOODY MONTHS because of the amount of immunosupression he was on. So that means no grocery store, no malls, no leaving the house essentially. If anyone wants to hand me my superhero cape and nursing degree, I'll be waiting. :Kit n Stik;
But our son was very happy to see Daddy tonight, and I could see in Tony's face he was happy to see him, so I guess that makes this all worth it.
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I swear I can't catch a break. I figured these next few weeks would be tough while he adjusts to hemo and can't drive, but he was told that he has to avoid public places for SIX BLOODY MONTHS because of the amount of immunosupression he was on. So that means no grocery store, no malls, no leaving the house essentially. If anyone wants to hand me my superhero cape and nursing degree, I'll be waiting. :Kit n Stik;
When does he get labs again, and how often? If they check him WBC count and it's going back up, I don't think the length of isolation time will be as long.
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The visiting nurse has orders to draw his INR but i am not sure if that's all they are drawing. I assume dialysis is going to draw labs too, because his next follow up isn't until the 17th.
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Shauna, are you saying that the blood, plasma and kidney all came from the same donor?
I continue to hope that this all gets easier for you soon. It all sounds so overwhelming.
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I know the blood and plasma during the 2nd admission came from various donors, but during the transplant, I am unsure. I forgot to ask, I got the heebee jeebees when they said he got a unit of blood. I am compiling a list of questions for the 17th. I already had to call them today to clarify the medications as it looked like they only removed the immunosuppressants and blood thinner injections. Sure enough, they did - some of the things they kept him on could actually do harm now because of dialysis again.
He is SO swollen today. I think he's +40lbs in fluid gains. We have to be at the hemo clinic by 615 in the morning (don't ask me why I'm still up as it's almost 1 but he's not sleeping so I can't either) I tried getting him to go to the ER for some emergency dialysis, but he refused. And the clinic sucks - tried calling to see if they could take him on for a few hours to pull fluid today, and they said no, go to ER. Of course he doesn't want to go to the local ER because he knows they will readmit him and he doesn't want to be in the hospital anymore. I am going to ask tomorrow if they can hook him up again every day just until they get his weight down. He hasn't consumed much fluids today or yesterday but he still seems to be growing. I am so worried.
I feel like I whine a lot, sorry about that if I am. My anxiety and stress levels have been off the chart lately. We had a normal before, and then that normal was torn apart and we planned on our new normal, and then that got torn apart a week later, so I had to make yet another normal for Marcus and I, then Tony came home and we have yet another normal. Enough to make my head spin. I just hope now, aside from figuring out where the antibody came from, they will relist him and he will adjust okay to hemo. I don't want to argue over it like we used to. He hated it, so he wouldn't get up in the morning, he'd show up late, he'd skip all together. He just doesn't realize how important he is to us. I mean jeeze, I walked in the house with Marcus today and he screamed "Daddy!!" and went careening into the living room arms raised to hug him. Then very gently climbed on his lap and asked how his boo boos were. I never ever get that kind of welcome. Gosh, I love that kid.
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You're not whining. The whole thing is really hard and yet you're coping. I'm impressed.
Aren't kids the best? Their love just gives you warm fuzzies all over.
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Aren't kids the best? Their love just gives you warm fuzzies all over.
He's being surprisingly gentle with Tony, which is good. I've pinned his JP drain to his pants so it's visible and I think that helps remind Marcus that Daddy has boo boos that he can't usually see.
Tony had his first in center hemo today. The director remembers him from when he was there 3 years ago, and said she could see how much weight he lost despite the swelling. She also arranged to get him hooked up in their other center for 2 hours tomorrow just to pull fluid. Hopefully by the weekend he will be feeling a lot better. They got about 10lbs off today and cleaned his blood. Tomorrow they will just pull fluids so hopefully the extra 2 hours dedicated to just UF will do him good.
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I walked in the house with Marcus today and he screamed "Daddy!!" and went careening into the living room arms raised to hug him. Then very gently climbed on his lap and asked how his boo boos were.
Awww!
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I'm so sorry Tony lost the kidney - the worst that could happen has (well, ok, second worst.. without trying to sound insensitive somehow). I really don't know what to add to all the supportive words, advice and thoughts everyone else has given, but I wanted to add my "me too" to the list of how upset I was to hear the news about Tony and to read the ongoing difficulties you've all had.
So wonderful to read about Marcus though to be perceptive and sweet enough to his dad to be like that. It must really warm your heart and fill you with pride like that.
And believe it or not, this whole experience makes you ALL that much closer and stronger as a team. You all are hanging in there and that's so important. It has been, and continues to be such a struggle, and there's more to come, but you are all together and that's the main thing.
My hopes are for positive improvements, some sense of stability to return and, down the track, thoughts to trying again, if they can solve the problem in the first place.
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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I'm on my lunch running home to get Tony to bring him to his 2 hour UF only session. But I got a great surprise today. A bunch of my friends from my mommy group pitched in and got me a maid service. My friend Ami told the lady briefly all that's gone on, and the owner was so touched by the story that they called her back and said they'd to the first session FREE! So I'm going to get 3 sessions of house cleaning! I was speechless. No idea what to say or how to thank them!
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What Lovely friends! So glad some people are helping you out.
How are you doing? So sweet your Little boy with his daddy!
thinking bout you 3 & hope Tony feels better once they get all his fluid off xx
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A maid service! Oh, that's just fantastic! This way you can spend more time with Tony and Marcus. How thoughtful it was for your mommy group to organize this for you. This has just made my day. I get all choked up when I hear about incidents of simple human kindness. :cuddle;
I apologize for being confused, so may I ask...what exactly is the final decision, if there is one, about Tony's chances of being retransplanted in the future. At first they seemed to be saying that it would be impossible, but now it seems they're not so sure. I understand that they don't really have a grasp on what caused the problem in the first place and why it happened, so I suspect there's not an answer yet, but what DO they know?
Still thinking of you and sending my most fervent prayers.
Oh, and btw, you're not whining, but even if you were, who cares? If you can't whine on IHD, then this site has not fulfilled its purpose. Whine away. I'm a master at it. It's a bit of a gift. :P
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I apologize for being confused, so may I ask...what exactly is the final decision, if there is one, about Tony's chances of being retransplanted in the future. At first they seemed to be saying that it would be impossible, but now it seems they're not so sure. I understand that they don't really have a grasp on what caused the problem in the first place and why it happened, so I suspect there's not an answer yet, but what DO they know?
What do they know? They know for sure that this was a rejection. They know for sure this antibody did not show up until after he was out of the hospital between Tuesday afternoon and Friday morning. That is really all they know right now, or knew when he was discharged on Monday. We are going back this Tuesday, the 10th for a follow up with one of the surgeons (I like him better, more bedside manner and he doesn't mind my incessant questioning and note taking so I can research when I get home) because his Jackson-Pratt drain is either done draining, or has a clot up near where it goes in his body and I can't get it loose. So they still had a lot of why's and how's to figure out when we left.
I am reading a lot of articles. I am doing a lot of research. I have lots of questions. I just don't want to annoy them, but I really want to print stuff out and highlight and point and ask LOL
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OK, thanks for that.
It occurs to me that all of your questions might actually lead them to an answer. You have only the one patient, Tony, to think about, and you can focus all of your time and energy into research. The docs don't have that much time; they must be awfully frustrated because doctors like to think they know everything. I'm sure they want to know what exactly happened, and I think your lines of questioning might actually give them some ideas.
The 10th is coming up soon, and I am eager to hear what you find out. Please let us know.
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So we're back up at Dartmouth. Tony's Jackson-Pratt drain stopped really flowing on Friday so I called up and they said since he had been back on hemo and everything was being pulled off, he may be done draining and made us the appointment for Tuesday. Well last night he started feeling nauseous and today he said he had a lot of pressure like a PD fill with a lot of UF. I got maybe 25ccs out of the drain since yesterday morning so I called again and they told us to go to the local ER. They did a CT scan and his belly is full of fluid, so Tony got an ambulance ride up to Dartmouth. He can't go a week without seeing them it seems. I assume they will bring him for surgery, but it would be nice if they slipped a new kidney in, too.
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yeah would be nice.... I hope all goes well with the surgery.
Lots of love, and luck, and lots of strength too.
love Cas
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I don't even know what a "Jackson-Pratt" drain is, but he has to have surgery to remove it? Am I understanding this right? Or are they going to reposition it to get rid of this belly fluid?
Next question...have they truly determined that he can never be transplanted again, or is there still hope in that regard?
:grouphug;
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A Jackson Pratt drain is a tube that comes out his side into a little ball. You squeeze the ball to create a vacuum to gently pull out fluid in the belly. Where he has been on PD for years prior, his body is used to putting fluid there. So it had been putting out quite a bit and then it suddenly dropped off.
And let me just say OMFG the resident is here in the ER and what a flipping moron. I want to punch him in the face. I just had to explain how kidney transplants work :Kit n Stik;
Moving on, they have not yet told us either way. Tony's nephrologist is friends with the surgeon and his nephrologist indicated to Tony on Friday that they do want to try to relist him. But we haven't heard for sure yet. Tony wants to find out if they will, and if they do, he wants to find out their plan and maybe run it by the prior hospital. Their chief of kidney transplant has written several articles on rejection, specifically HLA rejection. The prior transplant hospital is doing the bone marrow/kidney transplant with living donors, and Tony feels if the plan here isn't iron clad, then he wants to ask the old facility to use him as a guinea pig for a cadaver bone marrow/kidney transplant. He only wants to do this one more time, as you can imagine, hes pretty beat down, torn apart and just doesn't feel like he can keep going through this.
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They just used the PD catheter to drain his belly. He got out over 3liters. Now he's in excruciating pain - looks like someone has peritonitis. So angry - I called them when it started putting out a lot, I called then when it stopped (all signs that something could be wrong with the drain) and on Friday they said it was fine. Now that they drained him he's in excruciating pain, like when he had peritonitis. Guess what can happen if you let the fluid build up too long? Peritonitis.
This is his 2nd bout of peritonitis (if that is in fact what this is) and he might not be able to go back on PD if the infection is that bad. Why do these things keep happening to him????
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I don't even know what a "Jackson-Pratt" drain is, but he has to have surgery to remove it? Am I understanding this right? Or are they going to reposition it to get rid of this belly fluid?
Hi MooseMom - I had a JP drain after both my transplant surgery and the emergency surgery in April. No, you don't have to have surgery to have it removed, but I bet if there are any problems with it being obstructed, you probably do. Removal is usually done by a surgeon on a post-op visit, in the same exam room you see your transplant neph in. That is how it's done at my center, anyway. Results may vary!
Shauna, I wish Tony would get a break already! I think he has over come his lifetime limit of personal hell, and needs to be granted a new string of GOOD luck, not this bad crap he keeps getting. I hope that once this is all over, you 3 will be able to spend some enjoyable family time together. You need laughter, hugs and the ability to make good memories. You deserve it!
:grouphug;
KarenInWA
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Well, the initial test is back, and it shows no microorganisms. So it doesn't look like peritonitis, he could have had such awful pain from draining so much so fast. Or at least that is the next theory. He texted his sister and said he feels like this is how his grandfather died (his grandfather had bypass surgery and then complication/hospitalization one after the next). Unfortunately, the hospital called me when I was about 10 minutes from home, so I couldn't turn around and go get him, even if they did let him go home tonight.
They said maybe tomorrow after dialysis if the pain is gone, he can go home. If not, they may make him ride out the 3 days in the hospital while they wait for all the other cultures to grow. The last time he had peritonitis, the first gram stain showed microorganisms right away, so I am hoping that the first test will be accurate in this case also. Still no idea what they are going to do about the drain, I assume they will replace it tomorrow?
The way the semi-competent resident explained it to me, the Jackson-Pratt drain is used when they don't think the body can reabsorb the fluid and remove it naturally (or through dialysis). I asked because he didn't have one after the last transplant, and I didn't have one either. He said since Tony's albumin and something else were low, it would take his body longer to reabsorb the fluid so dialysis could remove it. It pulls out the fluid that causes swelling, and since you can't see swelling in the belly until it's too late, they use the drain instead. As part of the healing process I guess it can get tunneled off at the end in the body, which may be what happened here. The surgeon didn't want to go in and adjust it because if it's already started to tunnel off and heal, they don't want to open that back up.I am not comfortable with them using his PD catheter to drain him, but I guess in a pinch, it is the only option. I am afraid the PD cath will get clotted, and that's like the back up fail safe should something happen to his chest catheter so he can continue dialysis, even if the PD isn't adequate, it's better than no dialysis.
I am so exhausted. I guess I will be going to work nekked tomorrow because I didn't get to do laundry today, obviously. My cats are happy though, I didn't get to the store to get their food, so they got to feast on tuna fish when I got home.
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Well, now I know more about JP drains, so thanks for that, everyone!
Shauna, I can well imagine how Tony doesn't want more surgeries and more living hell, but I hope he will find it within himself to give it one last go at tx if the docs identify the previous problem and have a good game plan in which the two of you have some confidence. Surely this all can't go on forever. :grouphug;
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Shauna,
it was my JP drains that caused me the most pain, so that might be part of the trouble. I was in so much pain with them, I could barely sit up. I used pain patches directly over the tube sites the entire time I had them after all my surgeries. As soon as they came out, I didn't need the patches anymore.
MM,
JP drains look like little rubber hand grenades - or the bigger pineapple size, if you are really unlucky. They swing, tug, and pull, and must be pinned to your lovely gown whenever you get up, which pulls it forward and opens it even more in the back. :P
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Oh geez, jbeany...that sounds really unpleasant. I should have known you'd know all about JP drains. :cuddle; :cuddle;
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His pain was strange, it was on the opposite side of his belly than his drain and he swore it felt JUST like peritonitis.
I have to go up and get him tomorrow. They have found nothing wrong with him. They think the fluid was there because he had so much edema. They are going to remove his JP tomorrow now that they have most of his edema off, and I guess if he feels like hes getting full again, he can use his PD cath to drain (even though we are both very against this idea) All of the stains of the fluid have come back negative time and time again. I can't wait to have him home. The kid and the dog have made me CRAZY! :urcrazy;
I hope we get to speak with the surgeon. So far, he says he hasn't seen anyone from the transplant team. :(
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I'm glad he'll be able to come home tomorrow. I know you miss him very much. :cuddle;
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No place like home!
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Hold on to your hats, everyone TONY HAS BEEN RELISTED EFFECTIVE JULY 1!!!!! :bandance;
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...
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Oh, that has a familiar ring - "Capable of standing upright for more than 2 minutes? Yes? Discharge!"
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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.
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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.
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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.
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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.
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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...
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at least they know what to do for the next time.
you are an amazing person. best wishes.
catcare
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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?
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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
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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.
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Hope, no matter how slim the thread, is always stronger than you think.
:cuddle;
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Thinking of you both.
*huggles*
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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 (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.
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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. :(
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This has been terribly educational. I just wish you hadn't learned it too. Thank you for sharing with us.
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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.
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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.
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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 (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!
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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.