Lost Son - Dad Post Transplant

Hi all,

Hope everyone is doing well. I will expand on this later as I am exhausted having slept about 4 hours in the past 48.

It has been quite an adventure but I am glad to say that the transplant went well and as of right now things are going in the right direction. Spoke with dad this morning and he was very positive and was very happy/emotional. He was also back to his old self making jokes even though it was hard to understand him since his voice was very bad due to the breathing tube being just taken out.

The doctor told me that all signs they look for are functioning well and said he was doing fabulous at this stage. My whole family is very optimistic and feeling very blessed even though we know there is a huge road ahead. I think it is safe to say we (I especially) am still in a state of shock as how fast this happened.

Some key things:

- University of Iowa is FANTASTIC. The facility is very nice with great accommodations and the staff is terrific. They are very friendly and helpful. Especially the doctors. I feel my dad is in good hands here.
- The procedure took 12 hours (Start to finish)
- Breathing tube was taken out at noon today
- He will be in ICU for 48 hours then transferred hopefully tomorrow to the transplant recovery room
- I got the call and was here 5 and a half hours later, his was officially started 2 hours after that. So 7.5 hours from when we got the call.

Some of the issues along the way:

- I hadn't heard of this but one thing that was a set back was that the bile duct from the donor organ was larger than the one my dad had, therefore a standard connection was not possible and they needed a plan B. They ended up connecting the bile duct to a portion of his intestine. The doctor said it was not a complication but rather an additional technique that needed to happen.
- This issue caused the surgery to last an additional 2 hours and for that reason now, he will need to be on a liquid diet with no solids for 3 to 4 days to allow his intestine to recover.
- This will also mean his stay will be pushed back 3-4 days.
- His mouth is extremely dry but they are holding off on any water.
- There was a brief scare as his left leg was numb for several hours. and he still even now can not move his foot from the ankle down (Not sure what this is all about but I will keep you posted)


Some good:

- It is amazing how quickly his eyes and skin look better already. Even now that fresh out of surgery one looks very weak.
- His spirits are high although he does get cranky at times (The doctor said to expect this)
- His blood sugar level and blood pressure is normal
- His kidney function is well
- The doctor said "We are not out of the woods by any means, but I can tell you that 3 months from now you won't even recognize him"

That comment really stands out with me and I was very thankful for it as that is what all of this is about.

Thank you to all for your advice as it kept me sane and I hope it continues as I know this is only half the battle. I also was able to get a cheap room at a hospital rate. I will start looking for something longer term tomorrow. It appears we will be here 2 -3 weeks.

On a side note, my car broke down this morning and had to get it towed to a repair shop (Unexpected expense, but hey...I'll take that trade any day)

Oh one other thing, The incision is a big one! and I must admit, when I saw it, I knew how serious this is and how much of a miracle I am witnessing.

Alex

Thank you for posting. Sounds like things are going wrll. Mike has the too big duct thing. They always remark on it on the post TP MRIs, but the didn't get that intestine bypass thingie. He was off solids a while as you said, so that must be why.

I am sure he will be improving day by day. Does he have a Mercedes or a Lexus scar?

So many hugs,

Carol

Wow, lost son your dad did get his transplant I'm so happy to hear that. It's been a struggle since my dad passed in July, but we are trying to keep things together and still moving my mom to the city. I'm very happy to hear this news, I'm glad your father was granted a second chance :)

As another update he has now left ICU and is in recovery. Overall things seem to be going well physically.

However mentally his demeanor today is much different. He is extremely nervous and what I would say complete paranoia. Everything from thinking we are making too much noise to thinking we are pulling on the cords he is plugged into. It's very unlike him so not sure if this is normal? He even thought he was bleeding all over the bed when he wasn't and at times he says things that don't make much sense.

They also have nuerology check on his leg as it is still a bit numb and hard to move.

My mother will stay with him throughout the duration of it all but I am heading back tomorrow. Then returning over the weekend.

Alex,

Ups and downs post op. Think of it this way...they had him open for hours and hours and have a zillion things to hitch back up, then they started him on a zillion new meds...and may have to tweek that. And one of the meds is a boat load of prednasone, which can make folks a little hopped up and emotional. I'm sure they will check everything out.

Will you Mom go back and forth to hotel, or stay in his room.

Good luck concentrating at work!

Hugs,
Mama Lam

Alex,

I might be wrong, but I am almost certain that a child of a parent receiving a transplant can take time off under Federal Family Medical Leave Act.

Probably not paid by disability but it protects job.

Like I said, not sure but I think you can
Check with your HR department.

Sean

I am pretty certain the drugs have caused extreme paranoia. Comforting to hear it takes a while for drugs to wear off.

The paranoia he is going through is EXAGERRATED! He won't let anyone near him, says if he closes his eyes he will die. He heard people in the hall and thinks it's me arguing with the staff. I must admit this is a huge curve ball I was not ready for. It seems he is dilusional and very out of it. All day today was a real odd day. On the bright side, he stood up for a few minutes. But hasn't had the energy to walk yet.

lostson ... crying tears of joy for you and your family. So glad he got his second chance. From what others have said things should calm down as they adjust his meds and like David said, he recovers from the anaesthetic. Keep your eyes on the physical improvements!!

Take good care of yourself and your needs, too. Sounds like you have a heavy load ... but thank you so much for sharing the good news with us.

Best wishes for recovery in every area!

Oh I know! I can not wait to see the results of this miracle. It is amazing to think how he can become who he once was. Today he tried walking but it wasn't happening...he took only a few steps because he is so weak. I hope to see him walking by the time I return in a few days.

David, he is getting prednisone so that could be it.

Common sense to me says healthy. But I assume he needs to gain some weight.

lostson,
This guide will give you everything you need to know about transplants.


www.massgeneral.org/transplant/assets/pdfs/transplantcenter_patientguide.pdf

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David, I made your link "hot" with the [[[ marks. ML

Post Edited By Moderator (MamaLama) : 10/22/2014 6:43:08 AM (GMT-6)

OMG I'm so thrilled for you!

ALex, my brother had the episodes of confusion, and they think it was the combo that included seroquel (for sleeping) prednisone and prograf.

After they tweaked the meds he was fine...they dropped the seroquel and prograf and put him on the "c" anti-rejection drug (the name escapes me just now).

I knew your dad would get his tranplant when he was dual-listed...take one day at a time and you will have more small victories than drawbacks, I'm sure of it.

So nice that you were there for your parents, your mom must be so thrilled!

Hugs, Mae

p.s. he was switched to cyclosporine

I obeyed the rules strictly for 6 months, then began to cheat a little. My surgeon told me "you have a new liver, eat what you like." My dietician didn't want me to eat anything that wasn't well done. I went with my surgeon's advice and have been fine. I did wait until my recovery was going well before cheating.