Post Transplant Regimen - It does get better, RIGHT!?!?

[noahvale]

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[smcd23]

Oh yes, we're keeping track and he's drinking. He took in just over 3 liters of fluid today and put out a few 100ml more than he took in. He just finished a drink about an hour ago. I'm going to watch him like a hawk tonight to see his input/output and if his output is still down in the morning I'm going to call. He may have forgot to write a bathroom trip down. He just dozed off, and if tonight is like last night he will be up in an hour or so to use the bathroom. Crossing my fingers nothing is wrong, he's waited for this and he's not had an easy go with anything along the way.

[MooseMom]

Chris and smcd, what's all this about heparin and injections and pic lines?  I know that Tony had problems with clotting on his first go round...is that why he needs injections?  What's a pic line and what is it for?  Do all post tx patients go home with one?  I don't remember reading about THAT!

I'll be 2 hrs/2 1/2 hrs away from my tx center, so the commute is a problem that I've tried to talk to my husband about.  They're building accomodations for the families of out of town tx patients, but it's not ready yet.  Maybe it will be by the time I'm offered a kidney, but these sorts of projects that rely solely on private contributions take longer than you think, so hubby will be staying in a hotel while I'm in the hospital.  We can get the "hospital rate" if a room is booked through the hospital's concierge service, so that's something.  My husband knows in theory that it's going to be a lot of driving back and forth for the first several months, so he's going to have to decide what he is willing to put up with since I will be in no shape to drive for a while.  I guess sometimes you just have to let go of the ropes and let someone else herd the cattle for a while.  But my husband is one of those who don't like to think about details until it's almost too late.  LOL!

Smcd, I don't blame you for being paranoid.  After all you and Tony have been through, it's entirely understandable.  That feeling will probably last a while; it takes some time, I imagine, for someone with a new kidney to start feeling something close to confident again.  But Tony is already so much further ahead in the game than he was after his first tx. 

[jeannea]

Most people do not come home with a PICC line. Your meds should be oral and you should be able to eat and take meds when you go home. But if you do have an unusual problem you might need a line. It's rare because it's just another risk of infection.

[MooseMom]

Jeannea, thanks for that.  Where does a PICC line go?  Where is it inserted?  Sorry...I've heard of this but don't know a thing about it.  Please feed my paranoia.  LOL!  I need something new to worry about.

[jbeany]

PICC lines are an option for doing injections and blood draws without needing to be restuck every time.  Pretty common for anyone with lousy veins.  I had one inserted in the upper middle of my right arm all during my recovery.  It was where I hooked up to my IV nutrition, where they hooked up IVs, and where they drew blood.  I had mine for about 4 months.  I went home with it, and had to keep it flushed out on a daily basis.

 It actually ran up my arm, through my chest and ended very near my heart.  Boy, did that feel strange when they finally pulled it out!  I loved it though.  I am such a tough stick, that it saved me a lot of pain from the multiple blood draws.  I begged for one my last hospital stay, and the doc said no, he didn't think it was necessary.  He should have taken a survey of the blood techs they sent to my room.  They all wanted to know why I didn't have one!

[MooseMom]

Oh, thanks for that, jbeany.  That explains a lot!

[KarenInWA]

MooseMom, I had a line in my neck only when I was in the hospital, both for my tx and that emergency surgery back in April. Both times, that line was removed on discharge day. The only "weird" medical thing I had to deal with after discharge, both times, was the surgical drain. That wasn't all too bad. I was able to drive after 2 weeks, because I was no longer on pain meds (I still have my unopened bottle of them) so that wasn't a concern, either. Since I live alone, I had to do a lot alone, except for the first week after discharge, when I had a relative stay with me. She did not do anything medical for me, I handled all my own meds.  She was here mainly as a precaution, and to drive me around, make me dinner, things like that. It was nice!

Transplant experiences definitely vary from person to person. You won't know what yours will be like until you go through it!

KarenInWA

[Chris]

Mine was in my neck because there was no where else they could insert an IV in my right arm. I had to have infusions at home of themogobulin (sp?) and another med along with IV fluids. The heparin and saline is to flush the line out and keep it from clogging. You may or may not have this depending how things go. Jess21 could be of assistance if she was on because she had her transplant at the same center in Wisconsin. She has been busy and hasn't posted much on facebook. However this is where each person is different comes into play. Some have an easy time post surgery and some have trouble post surgery till things work out.
 

[Poppylicious]

Tonight setting up the overnight pills (which I taped in little baggies from the shelf above the toilet with the med name and time on them so he will see them when he gets up for the bathroom) wasn't as bad, and neither was planning the pills for Friday to take with us to his appt. I am starting to figure out what and when so that's good. He knows too I think because he asked at noon why he has 2 pink gelcaps (bp med) and not one like before, and I told him they upped his dose of that by phone today.

Are you sorting all his pills out for him?  When he's feeling a little more recovered be sure to pass that little (big) job onto him so that he's in control of his meds and knows what he's taking and why. He should be responsible for taking care of himself (and his kidney) post-transplant, and he is capable of planning it out himself.  How will he cope if something happens to you and you're unable to plan his meds out for him?  I like that Blokey has full control over his meds because it's one less thing for me to worry about.

 

MM, you'll be fine!

[smcd23]

Yes Poppylicious once he's feeling better he will take it over I'm sure. Tomorrow I plan on having him help set them up for the weekend.

We're currently at the local ER though. He took in 2000ml since midnight and only put out 500ml, so the transplant center wanted him checked and treated for dehydration.

[cariad]

Sorry to hear this. Thinking of you and hoping it's a quick fix for your fella! 

[Chris]

Hopefully it is only dehydration and he will feeel more energized and walk around after he is pumped with fluids.

[smcd23]

We're up at his clinic appt waiting on labs. All that fluid he had yesterday? He's retained it ALL in his belly. He weighed 8lbs more today than he did yesterday. It's not in his legs like it used to be on dialysis. Wish I knew what was wrong. I am sure the transplant team will fix it today but he's extremely uncomfortable in the meantime and can't provide a urine sample.

[lainiepop]

Hope his Labs come back ok thinking of you x

[MaryJoe]

I'm so sorry Tony is having problems, I hope they get him sorted out quickly.  I'll be thinking of you both, and holding good thoughts for an end to Tony's discomfort, peace of mind for you, and relief from anxiety and stress for you both

 .

[smcd23]

Sadly no good news. Kidney doesnt have adequate blood flow. Will need to come out. Despite the blood thinners it's thrombosed. He can never have a transplant. Ever. He has no access for hemo those all clotted too. Can't do PD due to a the surgeries. He hasn't decided what he wants to do. Currently bringing our son up to see him in case this is the end. 

[MooseMom]

Oh no. No no no no no no no no no no no no no.  I just can't believe it.  I'm gutted for you, absolutely devastated.  I am so so sorry.  I just don't know what to say.  I can't believe the docs have no plan B.  I don't understand the clotting issue.  What's causing that?  Is there some clotting disorder that they haven't diagnosed adequately that has caused this?

Oh, I am so so sorry.  I truly can't believe this is happening.

[MooseMom]

This news has actually made me sick to my stomach and has made me cry.  I wish I could make all of this go away for you and Tony.

[smcd23]

They have no idea what is causing it. His blood is thin thin thin but for some reason it's clotting in the renal artery. The surgeon was going to talk to hematology but their answer was the thinners after seeing his prior transplant records

[MooseMom]

They have no idea what is causing it. His blood is thin thin thin but for some reason it's clotting in the renal artery. The surgeon was going to talk to hematology but their answer was the thinners after seeing his prior transplant records

What?  Hematology says that the blood thinners are causing the clotting in the renal artery?  That doesn't make much sense to me.  None of this makes any sense whatsoever.

[cariad]

I am grieving with you and Tony right now. Such a shock, I scarcely know what to say. Sorry doesn't quite address the horror of this situation.

Can they at least get a cath for him to do hemo? I am hoping against hope that once you're past the chaos of the situation, the doctors can offer you new ideas.

Your family is in my thoughts.

[willowtreewren]

I am just in shock. Each day I've been sharing your story with Carl. This is awful....

Just awful..... I wish there were something I could do.... You have been a tremendous help to me and I wish I could return the favor somehow.

I can't even begin to imagine what you are going through. 

I am so very sorry. Words just don't reach the depth of sadness I'm feeling.

I hope there is some solution that the doctors haven't considered yet. 

Aleta

[MooseMom]

Is there any more news?  Have the docs been able to come up with ANYthing?  How is Tony doing?  How is he coping?  Do you have any friends or family close by to help you out?  Is there any chance your parents can be at the hospital with you?

[smcd23]

My mom and dad came up and sat with him while I went to get our son. They are pumping him full of steroids hoping to open the artery and get more blood to it. He is running very thin and keeps getting nose bleeds. Tomorrow they are going to do another ultrasound to see if there has been an improvement. Originally when I left they were saying it was coming out tonight. In the 2 hours I was gone they changed their mind. He still has output but it's nothing but blood it looks like, not sure if that's because he's so thin or what.

He doesn't want a chest tube. He's never wanted a chest tube. Not to mention he'd potentially clot it which is why a graft was never an option. That's why they went with fistulas when he started hemo. I tried talking about NxStage as an option if he went with a tube because he could do it at home like he did with PD.

I'm hoping hematology comes up to see him. They never tested for genetic conditions because the treatment would be what they did this time. But if it is a genetic condition that can't be fixed, I think I'd like to know.

I've always said I'd trade places with him in a heart beat, and that's especially true now. He deserves 30 good years. I've had that many, he should get the same. I don't want to have to explain to our son where daddy is.

He also has 0 native kidney function. His kidneys are 5.2 and 5.0cm and are atrophic. I don't know how long he'd be able to live on any sort of dialysis before it would need to be around the clock.