Update on Tony and "The Little Kidney That Could"

[smcd23]

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

[lainiepop]

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

[boswife]

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...   

[jbeany]

 

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.   

[willowtreewren]

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. 

 

Aleta

[MaryJoe]

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.   

[smcd23]

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.

[noahvale]

^

[smcd23]

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.

[jbeany]

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.

[amanda100wilson]

I am so hoping that things turn around.   

[smcd23]

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.

[cariad]

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.

[smcd23]

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.

[smcd23]

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!

[smcd23]

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

[cariad]

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. 

[WishIKnew]

Thinking of Tony and you....  What an ordeal!

[jeannea]

We're all thinking of you both. The whole situation is really tough. I hope the doctors can help him soon.

[smcd23]

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!

[Jelena]

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!

[smcd23]

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!

[RichardMEL]

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.

[jbeany]

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!
 

[okarol]

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!