transplant

[stubby27]

Iam new to the site .I am on a transplant waiting list and wonder if anyone has had one ,if so how long did it take you to really start feeling better and how long did you need after care,like actually getting help to get around meals etc i live alone kids are grown and will have to figure this out sometime .The hospitial is great but they olny can do so much

                                         thanks stubs

[mayday557]

Warm welcome to the forum...I my self have not been thru what you are at present.
Some one here may have the answers you seek.  This is a wonderful forum for
support, knowledge  and shared experiences.  Hang in there !  

[nygirl7]

One of our members who posts quite often will hopefully be on in a little while and he can talk to you as he was a transplant recipient.  He's a lovely man and I am sure will be willing to answer any questions you might have.

[mikesimon]

Recovery is really an individual thing and my experience may be quite different from yours. I was transplanted before the adoption of the MELD score and I wasn't really as sick as most transplant patients. Cancer was suspected and therefore I got a liver while I was still fairly active. I wasn't nearly as sick as most of the people who were transplanted around the time that I was. Okay, I was out of the hospital within 5 days of my transplant. The second day that I was home our new washing machine was not working and I went up and down the steps at least 15 times trying to get it to work. So I was able to get meals and bathe and take care of myself right away. Then I ran into some problems and everything changed for me. Then I needed help for meals and things like that. And, they generally forbid you to drive for a while post transplant and you will have to go to the center probably 2 times a week for several weeks after your discharge so you will need someone to drive you to and from. The drug regimen immediately post transplant is rather detailed and it certainly helps to have someone around to remind you to follow that regimen. Like I said, everyone is different and generally people aren't discharged as quickly as I was, they don't recover as quickly as I did and they also don't run into all of the problems that I did within the first month post transplant. My advice is that you should try to get someone to stay with you after your discharge because you just can't know how you will feel or what issues may come up. It's a new territory you'll be entering. I suspect that your transplant center would not be at all comfortable if they knew that you would be alone after your discharge. You really should have someone with you. That's my advice. I wish you good luck on this difficult journey. Mike

[Liz50]

Iamthewalrus is the "lovely man" and I should know, as I am his wife. I will have him post soon for you, he can answer a lot of your questions. I can only talk about the side of being his caregiver. Right now he is on a jobsite and working really hard AND he has a bad cold (his first in probably 3 years!) so he's a little swamped..but next time I talk to him I'll remind him to check in with his friends here.
I think I can say he did really well with the transplant, he did have a nasty post-op infection that set him back and if not for that, I bet he would have been a real poster-boy for transplants. Even with that he did well. Looking back, it was hard, but, well, he did great. Got a great match and had a great attitude. He can probably be a great help to you...but I gotta say, waiting is the pits!  

[cat33]

I went into the hospital on Dec.13  2006 very confused. Dr.'s after a week in the hospital finally concluded that my amonia levels were extremely high and put me on lactulose to rid the amonia which was causing encephalopathy. Well it took 9 months of tests and Dr.s for them to finally do a biopsy.  Messed up on first one had to do another one. I was told that I was at end stage called it cryptogenic liver disease. I think it was an abuse of tylenol and ibuprofen that I took for so many years to help with the pain of arthritis.  Since I had allergic reactions to prescription drugs.  Now I am not allowed to take any kind of otc or use pain reducing creams. So I am in a great deal of arthritis pain. I had no pain or symptoms of liver disease ,still don't.    Had to find a transplant center. ect. Well just got the word today Dec. 13 2007. That I have been put on the list.  So I too will be checking out this forum. For hepful words of wisdom. And of course from you since we are on the same boat. I have read some of Iamthewalrus posts in the past. He is very helpful. cat33

[nygirl7]

Liz - I am sure that your husband is a lovely man...but I did mean my friend Mike Simon just so you know I wasn't being "forward" and flirting or anything like that!

The Walrus is a lovely man - but I don't want you to get the wrong idea (you never know on the internet how people misread things!!!!!)

Please tell him to pop in he hasn't been around in too long - and as you know having friends with the same disease and problems is important...because we do care!

He's lucky to have a wife like you - I wish to God I'd had a husband who was so supportive when I was treating...you are quite a blessing I hope you know that!

[Liz50]

LOL ---after I thought about it I realized you did probably mean Mike Simon....(and I don't worry about the flirting!!)  
Walrus is working too hard....plus he's got that cold, so I think he's crashing at night instead of writing here, but still, I'll tell him to post. He does have the double "blessing" of having had a transplant and being HCV+.
Don't know if I was much of a blessing to him. Do my best, but, well, this is not a trip for the faint of heart!  We are blessed with 5 terrific kids and 4 beautiful grandbabies--I think tha's what keeps him going. (Love you, babe!)

[IAmTheWalrus]

Hey, I AM the walrus! hahah. I read the "lovely man" and then read Mike's post and knew who you were talking about. But it's nice to have a wife that is so loving!

Wifey: Thanks for the adoration!.

[IAmTheWalrus]

Haven't been here for a while, but my wife said that there was someone "on the list" that might want to hear from me. So, you're the main reason I checked the forum tonight. Now it is nearly morning and I'm still here.

I think Mike, as usual, sums things up very concisely and completely. I don't think I can add much to what he said, but that never keeps me quiet. I found his comment about needing help managing your post TP meds to be particularily insightful. It seems a simple task, but given the physical, emotional and pharmaceutical state you'll be in, and the pills sooo numerous, it can seem almost overwhelming for a while. The level of steroids that you will be on temporarily can cause melancholy and an emotional roller-coaster effect. I found myself tearing up over every little thing (like the sappy plot to a TV show). My wife says, "welcome to a woman's world" :)  

Can't say enough about how much I needed and appreciated my loving family and friends throughout.

Having someone you can rely on for a while will be essential. Your TP center should enquire about your support network and, like Mike says, would be reluctant to release you unless you have good support. You definitely can't manage alone for a few months. That being said, it was only a couple of weeks out of the hospital when I was able to get up and around, make meals and go for fairly good walks.

Unfortunately, I had complications with post op infection. This and other complications are not uncommon. By the time I was out of the hospital (the second time) a month, I was walking several miles a day, though sometimes I had to call my wife to come pick me up in the car because I was too exhausted to finish the return leg!

Four months after TP, I returned to work full time (though I was a bit of a slacker). I could have done this after 3 months, I'm sure, if not for the complications.

Six months after TP, I was only taking a couple milligrams of Prograf each day, and that was all! Because of Tx for HCV, that has changed, and my diet currently consists mostly of pills. But this also is temporary.

On the upside, I lost a lot of weight after the TP  - now 20% less Walrus :)

Most of all, I can say that you're welcome here and I hope you can draw strength from this forum. I think you'll find support in hearing from people who have similar circumstances. I have. Msg me anytime if I can help. Wish you the best!

Mike: I can't believe you were out of the hospital after 5 days! I thought I did great getting out in 9. Maybe it was because I had to have an ERCP to place a stent in a leaky bile duct. Still, no way I could have been out in 5.

[Liz50]

Thanks Walrus (I NEVER call him that at home, it is purely the kid's nickname for him--we're all Beatle's fans)--can y'all tell we're apart?
Walrus is right, you DO need a supprt network. Just the meds post surgery are daunting and the timing of them is crucial. That was one of my jobs for a long time. Walrus was busy crying over sappy movies (J/K) but he did have a lot to do, he was diabetic due to the prednisone and the shock to his system of the surgery and so he was the one who mananaged all that. I fed him the kind of meals he wanted/needed--carbs, protein, etc. As he pointed out, you wil probably not be allowd to go home without at minimum  a part time caregiver. Your mid will be still fuzzy from so many drugs and even the anesthesia takes a long time to dissapate. Also you'll have labs & blood work--we were back at the hosp. 4 times a week for blood draws and labs for a few months. It tapers off. Our transplant facility offered a kind of "hotel" arrangement for people who were from out of town and several patients were released from the hospital to there (right next door to the hospital). Check all this out before you need the care. Once you;ve had the transplant you will feel like a train ran over you and decisions will be harder to make.
Walrus and I were super blessed and continue to be so with great family & neighbors & friends. Hopefully you too, will find that supportive network of people. You will need them. Good luck!

[Trish77]

I am not waiting for a transplant so I can't entirely relate.  I just know that my kids are grown and I really didn't want to interrupt their lives.  I had really been hoping to just slide through treatment without them knowing much about the side effects and the ramifications and just handle it on my own.  But when I got thinking about that first weekend I knew I'd want someone to be there with me if I could...and when I started thinking about who I'd ask, I just realized that to bypass my own children on that and not to even give them the decision was just so totally wrong.  So...I called my daughter who is 24.  And I was nervous about it because the last thing I want is to worry my children.  And I asked her if she would come home the weekend I do my first injection and she didn't even hesitate a second and said "sure, I can do that Mom" and then she said she figured she'd probably have to come home a number of times to take care of me...and said I'd taken care of them and now it was their turn to take care of me.  I gotta tell you, I just broke down and cried.  And then she DID get worried and asked me what was going on and I told her...that I didn't have a clue how much to tell them and that the last thing I wanted to do was worry them and make life harder for them...that that would make life harder for ME.  And we had this very adult conversation where she proceeded to tell me that they would actually appreciate it if I was straight up with them and tell them honestly what was going on.  She said if she came home on a weekend and found me in rough shape and she hadn't been prepared for that...that then she WOULD be worried.  She let me know..they are adults now and that she would appreciate it more if I would level with them rather than hide things from them.  

I have a great relationship with my three children, my son who is 21 and my daughters who are 23 and 24.  They all live away from home and various distances.  My son is in the same area as me only every four months when he's on university semester rather than co-op and frankly, I probably see him more when he's on co-op in a city an hour away than I do when he's on semester living 20 minutes away from me.   They're very independent, living their own lives...and I want it to stay that way.

Just the same.  They've told me what they want from me.  My son wants facts once they're known, my daughter wants straight up honesty as does my other daughter.  And I'll count on their sense of humour which is in abundance.  If I do weird things on treatment.....I can COUNT on them making abundant jokes about it!!

So... I guess I'm saying talk to your kids and let them know what's going on and what you're going to need.  My kids KNOW I don't want to be babied and pampered (well SOMETIMES I want to be pampered) and they know I'm too fiercely independent to be relying on anybody any more than I have to and I suspect your kids know the same about you.  So... talk to them.  They might surprise you.

And forgive me if what I've said doesn't apply to you... I know every situation is different.  Just throwing my two cents into the wind there.

There are probably also community resources out there that can kick in for some of this stuff, cause you can't be the first person in this situation and perhaps your care team can point you in that direction.  Just... please....accept the help you need.  I wish you very best of luck with this.

Trish

[Liz50]

Trish, I wish you all the best and I am glad you informed your kids. They would have noticed something was wrong..and at ages 21, 23 & 24 thay are certainly old enough to handle the truth. We have been upfront with our kids from the get go and they have been a real source of strength.
Stubby, you say your kids are all gone, but you might be surprised by the amount of support they will give you--I don't know a thing about the dynamic of your family, but it doesn't do them any favor to not share with them what is going on in your life. Of course, Walrus has me, but he self administers his shots and is 100% on top of his meds (all I do is nag him not to rub his itchy eyes!) and fuss him a little on the wknds when he is sickest. I do keep track of the next order of Interferon and pretty much handle the house & yard and stuff, but honestly, that isn't all that much difference from before--he's always worked a ton and so I guess I just kicked it up a notch. Our sons in law have helped out when necessary and our daughters are wonderful. It's definitely been a family affair. I can't imagine not having all 5 of the kids involved and if I told you how many extended family, too, you'd pass out. We're darn lucky. All I am saying is, you really do need to draw a support network around you...family, friends, whomever you can, because the TP will be tough on you for a bit. (One of Walrus' TP doctors told me "100 days"--and he was right on! After 100 days things were so much better!)  I think for Walrus, and I know for me, that just KNOWING we have so many good people pulling for him...it's a daily affirmation that he's loved. That helps a lot. Talk to your kids...you might be very pleasantly surprised...and when you have the TP,  trust me, they will notice :) !!!
All the best-
Liz

[Trish77]

Hi Liz, it isn't that I didn't tell them anything.  They deserve better than that...and I wanted them to get tested as well, they've lived with me all these years without me knowing to take any precautions and I know my daughters and I have shared razors.  It's not knowing how MUCH to tell them. Them worrying about me isn't going to help me OR them, however they also need to know that we can go through these things ALSO as a family and manage this together too - and my kids and I have been working through that maze together and they are helping ME understand what they need from me, now that they are adults as I've spent years carrying the load so that they could get off to a good start.  They're capable and independent...but I'm still Mom and not used to this change in roles just yet, where my daughter says now they can take care of me....never much been one for being taken care of period..lol  :)   It's a transition thing and I'm sure my kids and I will learn a great deal through this...and I will LET them take care of me as I need it.  Thanks for your thoughts, Liz.

[Trish77]

And on that note.. I'm going quiet.  Just wanted to put in my thoughts on talking to your family and I don't know a damn thing about what it's like to go through a transplant and I'll leave that to people who do.  I wish you all the best.

Trish

[mikesimon]

Just before I was put under anesthesia my surgeon told me he had a patient who went home in 5 days - the seed was planted. I was closed early Saturday morning - around 1am and out of ICU Monday and walking the halls. My surgeon said that if it hadn't been the weekend he'd have had me out of ICU Sunday but he didn't trust the weekend staff. On Tuesday he asked me if I was ready to go home tomorrow and I was floored. I told him I would do what he advised and he said "your biggest risk is infection and a hospital is one of the worst places to be". That sealed the deal and I left the next afternoon. I was back at work in 10 days but I'm the boss and the boss never does anything anyway so it wasn't a big deal. I ran into issues about 2 weeks later and the honeymoon was over.  Mike

[Liz50]

You are 100% right about hospitals being the worst place to be if you're sick. Walrus picked up a horrible infection there...it took 3 weeks to "fester" and then , POW, he was sooo sick, so fast. I guess the only upside to that was we never saw a bill for the "infection" stay. No doubt it was a hospital borne one too. Recovering from that was worse, in many ways than the TP. But luckily, he didn't have to re-start the taper on any meds...just picked up where he'd left off. The infection just really left him weak and he'd really been doing so great, post op.
Trish--I totally understand how hard it is to let go of being the "Mom" and let your grown kids help. I cried buckets because my daughter had Thanksgiving at her house and I felt so guilty...that's my job..but then I thought "I spent all these years raising these fiercely independent kids and for what purpose? So they can be adults and take over some of the responsibilities!  And yes, when we found out Walrus had HepC we had some sad moments, but I never for one second thought any of us had contracted it (and I was right). We are more vigilant about his razors, but that's all. It really must be a tough little bugger to get. We are going thru all this as a family and for the most part, we are of one mind and spirit. If this TX doesn't cure him, then the next one will. His TP was a miracle, truly, and we all share that belief. We're putting a lot of faith in the TX and hoping and praying for the best outcome. That's all we can do.