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Received my new liver


#21

Thanks for your thoughts, everyone.
I’m working an hour or two from home with a laptop, and will go part time in the office on August 14, and full time starting Sept. 5.

I have been going on long walks most days, and hit just over 7 miles today.

On the downside, the bills started coming in today.

But I have to take the good with the bad.

Dolphin5, my wife looked forward to going back to work, as it beat being with me.
And I can’t blame her!

Jeff


#22

Thanks for the update Jeff. Glad to hear you are back to work at least from home. I well remember doing that in the recovery days after transplant. It was good to be needed as I know you probably are feeling also. It’s hard though to let other folks lift for you. That 5 pound limit I had to endure for 3 months was quite a trial, but I made it and you will too!

Glad you are doing so well!

Mark


#23

Jeff - Three months with your liver. Give us an update if you will. Close to 100% yet? Working? New found wisdom?
Thanks in advance.
E


#24

Extraordinary work and Faith Dolphin 5!!!


#25

Eric1,
For an update, I think I am about 95%.

My bloodwork is still very good and I am back at work full-time. I am very thankful for both. No signs of infection, rejection or anything else have been noticed, and I do a very good job of listening to my body.

I have been able to taper off two of the meds; the fewer the better.

Slight concerns are: my coordinator has told me to drink more water, as my creatine level has crept up, and our pills are not kidney-friendly. My abdomen is still tender; sometimes it takes a few seconds to stand up. One of my cats has a knack of finding the most tender spot, and stepping on it. Every time.

The energy level has been pretty good. I was tempted last week to sleep when I got home, but chose instead to go to bed earlier; that has worked out well.

The appetite has been good. As transplant patients have been known to gain a lot of weight, I am continuing to minimize my portions, but have gone back to three meals instead of grazing.

I need to make more time to walk. Working full time does not leave much time for a two hour window to walk, and weekends are the same.

So things are still looking up, and hopefully, they will stay that way.
Jeff


#26

Thanks, R of S. It’s nice that someone recognizes how hard it might be for a caregiver.

Guilt over the level of support I was not able to provide at times for him post-transplant needle at me and I’m trying to be kind to myself about it. After 6 years since diagnosis and my effort to ensure he remained a good candidate for getting a transplant, I took a bit of a dip post-transplant and found I needed some space from the still intense roller-coaster. (Pre-transplant was intense). I know it will get easier and I will adapt to the changes. Time along with acceptance of the perpetually moving target of the new normal helps… and a good measure of kindness and patience to create the healing environment that both of us need.

Amazing to hear about Jeff being 95% and transplanted at about the same time! Everyone’s path is so different. I keep telling my husband (along with the transplant team) that it will take some time since he was so ill before-hand. I figure a year from transplant we will have a better idea of what the “new normal” might look like.


#27

Thanks to you Dolphin. My husband has only been diagnosed as of two months ago… Hope to tap into your wisdom and perspective at times when we go forward and I don’t know what the hell to do.
:heart:️Keeping the faith,
Liz


#28

Please do. I don’t come to this sight too often anymore due to being in a new chapter and still a bit overwhelmed with post tx life… but if you post a response to this reply I’ll get a prompt in my email. Ask me whatever and keep in mind each situation is so unique. In our experience there was some consideration for my husband having PSC and being so very ill. It wasn’t formalized in extra points , but it was in motivation to find him a liver ; and fast. I was amazed at how many tx were done in the time we were there! Hope, patience and always, always love; for love is the bottom line of it all. Peace, Dolphin 5


#29

Hi its sounds like you had a long road …hopefully you can now get stronger a better each day …im only new on this as only recently told I’ve pcs…scared and having a feeling of not knowing what’s around the corner.hopefully reading stories like yours and others can help …tks hopefully hear from you again


#30

Ask questions any time. This group has helped me so much along the way. Don’t go it alone. Sending my best. :dolphin:


#31

Hi tks for reply …got bloods done in dec going bk the 18 of jan to see specialist in dublin so see what happens then …only the last two weeks ive started to itch a bit…im worried dont no know whats happening …im working everyday no problem with being tired doh in the night i go asleep before 9 …