Update on Tony and "The Little Kidney That Could"

[smcd23]

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)  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. 

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.

[okarol]

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. 

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.

[smcd23]

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.

[cariad]

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.

[smcd23]

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.

[jeannea]

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.

[smcd23]

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.

[jbeany]

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!

[RichardMEL]

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.

 

[smcd23]

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!

[lainiepop]

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

[MooseMom]

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.

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.

[smcd23]

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

[MooseMom]

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.

[smcd23]

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.

[cassandra]

yeah would be nice.... I hope all goes well with the surgery.

Lots of love, and luck, and lots of strength too.

love Cas

[MooseMom]

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?

 

[smcd23]

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 

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.

[smcd23]

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?

[KarenInWA]

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!

 

KarenInWA

[smcd23]

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.

[MooseMom]

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.   

[jbeany]

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.   

[MooseMom]

Oh geez, jbeany...that sounds really unpleasant.  I should have known you'd know all about JP drains.

[smcd23]

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! 

I hope we get to speak with the surgeon. So far, he says he hasn't seen anyone from the transplant team.