Update on Tony and "The Little Kidney That Could"

[jbeany]

 

[Sax-O-Trix]

I am so sorry this has happened.  I hope you have been able to find some help on the home front...

[smcd23]

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.

[amanda100wilson]

What can I say?.  I am so, very, very sorry to hear this.   

[paris]

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.              

[smcd23]

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.

[bleija]

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

[smcd23]

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?

[boswife]

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...   

[lainiepop]

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

[MooseMom]

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.

[okarol]

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 

[jeannea]

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.

[smcd23]

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!!

[jbeany]

 

I hope they can get him back on the list - and in a hospital closer to you, too.

[smcd23]

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.

[okarol]

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! 

[Deanne]

I'm sorry you and Tony need to go through this. 

[willowtreewren]

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

[smcd23]

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...

[amanda100wilson]

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?

[smcd23]

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.

[Zach]

Was Tony on an Expanded Criteria Donor (ECD) list?

 

[smcd23]

No he's too young. They want him to have an under 45 kidney, or would prefer it.

[amanda100wilson]

Even if the person with bone cancer was the donor, there is no reason that this would have any link with the rejection episode.