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Posted 8/24/2008 3:23 AM (GMT 0)

LaBunna

I am so glad your husband is doing so good.  Don't worry about him looking so frail. My husband was 209 before his transplant,with asites and all, but when he came home was 147.  The prednisone they put him on had him eating and he gained back to 186 at his heaviest.  Take care and don't be afraid to call your transplant team if you have any questions or fears, we had a great team and took real good care of us.

Helen

Posted 8/24/2008 3:24 PM (GMT 0)
Hi Helen, How are you doing? My thoughts and prayers are still with you.
Posted 8/24/2008 5:44 PM (GMT 0)
JoAnn

We got the call from the "Transplant Co-ordinator". I wanted to talk to a real doctor and a real nurse. (Well, maybe she was a real nurse, but I had it in my mind that she was just an administrator type. I called our hepatology doctor and , of course, my BFF who has been an RN for 30 years and spent 10 of those years on the surgical floor.

Side note - Hubbie took his first shower today ( in 13 days!) Whoa!!!!!!!!!! What a scarey ( and scar-y) experience.

But we did very well. I kind of took over at one point and finished him when he got out... he is still sooooooo verrrrrrrrry shaaaaaaaaky from all the drugs.

Thank goodness when we left the hospital they gave us a HUGE home care kit... compelete with one of those daily/hourly pill organizers. It would be just impossible to figure out what to take at what time and on what day without it! A God Send!

He is taking (probably) 25+ pills per day at different hours. One of them or several of them (I think it's the rejection pills) make him shake like a leaf in the wind. Forget about soup! If it's soupy... I feed it to him, otherwise it sprays all over.

This is supposed to subside one of these days.

Also he is on steroids for 3 more days to help suppress rejection. DO NOT LIKE THE SIDE EFFECTS OF THE STEROIDS. Makes him a little combative and snappish. But - only two more days for these evil pills.

That's all for now... just wanted to check in and wish you all the BEST HOPE and BEST PRAYERS!
Posted 8/24/2008 6:45 PM (GMT 0)

Butterflythree

Thanks so much for your prayers.  We are not good.  Jerry's cancer has bout go the best of both of us.  I don't believe he will be here much longer.  He's at home since they are not treating the cancer with anything except the Nexavar, and I'm keeping that up for him and the kids.  He's wearing a pain patch that has finally got the pain under control, but he can't eat and drinks very little. But we'll get thru this somehow.  Right now we need to celebrate with LaBunna.  LaBunna have patience, it will get better. You and your husband is in all our prayers.

Helen

Posted 8/24/2008 10:32 PM (GMT 0)

Helen, my thoughts and prayers are with you, Jerry, and your family.

Hugs,

Connie

Posted 8/25/2008 3:32 AM (GMT 0)

LaBunna

WOW-I have hard time now with Jerry's meds.  I can't even immagine 24 a day.  I also have a daily pill organizer.  It has been very useful.  Especially since I have trouble remembering my own name some days.  I'm  really getting the drift of what you are going through now. 

.. Have you surprised yourself at how really strong you are?  I always thought I was fairly strong but some days I pray for just ONE day or even ONE  hour of not being worried or afraid! 

.. Are you starting to see a light at the end of the tunnel.  Or are you still too tired to think about that?

.. Can you get help to come in and check your hubbie?  I would think it would be nice just so you know he is doing OK.  I dread that fear.  That and the lack of sleep are my weakness. 

.. Will your hubbie have to take the rejection drugs for the rest of his life?

Sounds like your doing a good job.  Just give yourself a big pat on the back.  This reminds me of the Dr. in the ER that told me I was really in for it with this disease and that Jerry was going to owe me BIG TIME when this was all over.  Well my dear, start making your list.  Of course #1 will be for your hubbie to be ALL better.  But now start working on #2-#3  and so on and so on.  If you are having any trouble deciding just let me know.  I'm sure I can come up with some good ideas!  That is on the days that I still have a brain!

Hang in there

JoAnn

Posted 8/25/2008 4:01 AM (GMT 0)
La Bunna, I didn't realize that your hubby is home!  Well, yay! on that!!

I have a brief suggestion about soup or soupy food:  Try a sippy cup!  idea

Big hugs,

Connie

Posted 8/25/2008 4:13 AM (GMT 0)

LaBunna

I forgot to tell you in my previous post.  I have purchased straws in bulk.  They work great.  Jerry uses them to take his lactalose!  OH_Maybe your hubbie doesn't need that nasty stuff anymore.  WOW-that would be awesome!!  Anyway the straws work great if you are shakey.  Being a Seattle girl I learned early on how to drink hot coffee through a straw so I know they work for hot stuff.  Have a good evening.

JoAnn

Posted 8/25/2008 5:01 AM (GMT 0)
LaBunna

I have just joined this site this evening..and have read everyone one of your posts...I am so happy for you and your husband. My boyfriend has ESLD and we are on a transplant waiting list. The wait is agony for both of us. He has been on the list for only about 3 weeks and has a MELD score of 23 now (it started at 18). It was a huge releif to finially get on the list, the process took us about 5 months. Am curious if anyone has any insight on wait times. Also looking for ideas for drinks, low sodium but not water as he has ascites.

Jennifer
Posted 8/25/2008 8:15 AM (GMT 0)

Hi, Jennifer.  I just wanted to welcome you to the forum.  Wait times seem to depend a lot on which facility you are using and in which state.

Congrats on your b.f. finally getting on "the list!"

Connie

Posted 8/27/2008 7:47 PM (GMT 0)
NO MORE LACTULOSE!!!!!!!!!!!!!!!!!! HOORAY!!!!!!!!!

Saw the transplant doctor today for his first checkup visit. She said he is doing great and all the staples will be coming out next week.

She also 'guaranteed' us that the shaking will stop as he gets used to the antirejection drugs.

As far as him owing me "big time".... he doesn't see it that way. He is talking about all the things he "owes himself" after he gets healed.

(You'd have to know my husband to appreciate that.) He was a spoiled kid and it seems he will always be a spoiled kid. rolleyes

Jennifer - if your boyfriend has ascites... no more than 1500 ml of ANY fluid a day! Go online and search for 'low sodium' - you will find a wealth of information. I bought a book from a website that is a sodium guide. It was a great resource.
Also - if your boyfriend has a MELD score of 23.... that's pretty high. They told us anything over 21 was 'transplant territory'. (Of course it didn't work out that way for us) I think the big question is, does he have a lot of symptoms? And is he being hospitalized to be 'tapped' often? My hubbie was going into the hospital almost every 2 weeks at the end. This helped get him a liver along with his terrible confusion.

But, every team in every hospital has a different philosophy. Our team always told us they were 'aggressive'.
And by gosh...they were!

Joann - our transplant doctor (a tiny oriental gal - she looks like a high school kid) is from Seattle! She trained there and she talks about it all the time. There - that is a good omen for you and Jerry.

More later, folks. You cannot believe how much I have to do now that he's home and totally helpless!

(Yes a nurse comes in every other day, but she only stays for 30 minutes or so with him. NOT that much help to me, except for the peace of mind.)
I am kind of needing the PHYSICAL help. My hubbie can't even bend over to put a dish in the dishwasher. (I think he kind of likes that).

*** You'd have to know my husband to appreciate that*****

rolleyes
Posted 8/27/2008 8:24 PM (GMT 0)
yeah yeah yeah to the no more lactulose. sad to the no help......but when he becomes 100% again I would definitely call in some markers for everything that you did and been through on his behalf. If he has trouble realizing just how much the past few years affected you just make him come on this site........we will give him an earfull!!!!!.......oops I mean and eyeful. You deserve to be the spoiled one now.


Happy thoughts your way.......... tongue smilewinkgrin turn
Posted 8/27/2008 8:33 PM (GMT 0)
PG
You are a sweetie!
Posted 8/27/2008 10:11 PM (GMT 0)

La Bunna, so glad to hear that your hubby is off the Lactulose!  That's really progress!  As for getting no physical help from him for awhile:  Remember my hernia--or rather hernias, as the first repair didn't hold up? That was due to the huge incision that was made--probably the same as if I'd had a transplant.  Believe me, you do not want him to go through that and be set back again.  So let him be the "spoiled kid" for at least 8 wks.  He will regain his strength in time, but meanwhile he is still healing from surgery on the inside...which takes a heck of a lot longer to heal than the outside incisions.  I'm now at 12 wks. post-op from the last hernia repair, and still don't feel comfortable lifting anything 10 lbs. or heavier, or vacuuming for long.

Hopefully, he is sleeping on a more regular schedule, and you are able to get a decent night's sleep, too.

Hugs,

Connie

Posted 8/28/2008 1:52 AM (GMT 0)

LaBunna,

We just returned from Vanderbilt.  Man, did I have a lot of questions.  And this time I finally got some good answers.  I am feeling so much better.  There are a lot of reasons they were so hard on us to begin with and now I totally understand.  Since they did blood work we should get a call in the next few days.  Normally when I get blood work done locally they fax me the results and I calculate the MELD.  I few things I did learn, if Sodium falls to 130 or lower your MELD automatically goes to 22! Interesting isn't it.  There were several times a year ago when Jerry's sodium was 125. Of course he wasn't on the transplant list at that time.

  I also know what you mean by having to do everything.  I have been for a long time.  That is whats wearing on me so much.  What makes it hard is Jerry has this Anal brain that everything has to be done perfect!  My brain does not think that way.  So by golly he doesn't always get it done his "Brain" way! I'm too over loaded.  Probably some things you are going through now. 

I had more questions for you LaBunna but I have already forgot.  I'll write them down when I remember.  We came home with a new prescription for Itching YEA!  Keep your fingers crossed.  I need a few 8 hr nights.  So glad things are going good.  I can only immagine the relief you must feel.  Don't you think you can maybe get a nice relaxing LONG vacation out of all this.  I bet you do.  Just don't expect it and it will be a nice surprise.  Keep the reports coming we all love them.

JoAnn

Posted 8/28/2008 10:51 PM (GMT 0)
Hi LaBunna,

Will try to really limit his fluid to 1500 ml...i think we've been told that, but thanks for the reminder...We have been told so much it is hard to remember it all.  He has been dehydrated too so have been trying pedialyte.  He doesnt like the fruity flavor though.   His number has not changed this week, but we are supposed to go down to Strong for a reevaluation in a couple of weeks.  He is now being "tapped" once a week, and feels very week afterward, they are talking about a "tips" procedure. He is not too excited about that as their are risks involved.  

No more lactolose, that is awesome!!! We go through it by the gallon it seems, after reading other posts it seems like everything we are going through is pretty normal... It does give me comfort in knowing that we are not experiencing symptoms that are uncommon with this diagnosis.  I have learned more reading threads on this site and also find comfort in that.  

I hope you are finding some time for yourself La Bunna, as i too understand the work involved.  I am also trying to get 3 kids ready to head off to college!!!

Cheers,

Jennifer

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