This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

Interested in more discussions like this? Go to the Transplants Support Group.

@jodeej

@jeanne5009 I've been up for awhile also, but I'm in the central time zone! Lol I can't imagine how horrible it must be to be constantly itchy. I pray you get relief, soon.
Blessings,
JoDee

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@jodee
The second dose of prednizone has kicked in and I'm only 1/2 as itchy ..if that's possible. It's a heip though. Thanks for scratching my back!

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@gingerw

@rosemarya Thank you for asking. We checked out a few areas to consider for retirement. Spoke to some locals to get their input. And had to revise our route home due to high winds and chain requirements on the way back. A long day driving today, and the cat is sure happy to see us home! The neighbor is a nice person who kept her dishes filled and litter box cleaned, but she had no one to cuddle with at night.
Ginger

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Ginger, That sounds like a very satisfying trip, except for the wind and chain requirements. You should be able to sleep well tonight in your own bed. And your cat, too!

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@jeanne5009

@rosemarya
SLEEP? I am often awake at strange hours typing away not realizing people might be disturbed. Once a friend scolded me because he leaves his phone handy and on listening for an emergency call from his sick mother.....
church is the beach for me...but I enjoy going every once in awhile.

Itching update...4xs to PCP...3xs to derm ..PCP on vacation for a week next appt with Derm PA on the 3rd. Steriod creams, antihistamines and diet elimination not working. Liver bloodwork A+. Not scabies, lice or any other critters....my house is spotless and the laundry machine are on overdrive...lol. So...yesterday I went to the ER. No tests or answers. They put me on prednizone for the 4th time. It is relieving the fiery itch somewhat...but as you see...now I'm awake and full of energy...
Maybe I'll never need a new liver...Ill just invent a professional scratcher...lol

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@jeanne5009 I can only imagine how exasperating it must be to itch so much. When I have a mosquito bit it drives me crazy.
Is this thought to be related to your cirrhosis? I did not have this problem with my cirrhosis but it seems that it's unpredictable which symptoms you may or may not get, for instance, I was never jaundiced. I sure had a lot of other symptoms though.
JK

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@contentandwell

@jeanne5009 I can only imagine how exasperating it must be to itch so much. When I have a mosquito bit it drives me crazy.
Is this thought to be related to your cirrhosis? I did not have this problem with my cirrhosis but it seems that it's unpredictable which symptoms you may or may not get, for instance, I was never jaundiced. I sure had a lot of other symptoms though.
JK

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@contentandwell
My 6mo bloodwork was done and I dropped 2 meld points to 6. Dr. doesn't think it's related but I haven't ruled it out yet. The ER doc put me on prednizone 20 1 per day for 5 days. It's helping the itch but the rash is still there. The last 3 rounds of prednizone didn't work either. Well see.
Guess the allergist and patch testing is next.
I have a hard time rationalizing how I could be Stage 4 End Stage Cirrhosis with a Meld of 6 but I'm thankful for it...I guess... Can this all end anytime soon? I suspect I'm in for the long haul...Im pushing 69 maybe I'll just die from itching...lol

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@jeanne5009

@contentandwell
My 6mo bloodwork was done and I dropped 2 meld points to 6. Dr. doesn't think it's related but I haven't ruled it out yet. The ER doc put me on prednizone 20 1 per day for 5 days. It's helping the itch but the rash is still there. The last 3 rounds of prednizone didn't work either. Well see.
Guess the allergist and patch testing is next.
I have a hard time rationalizing how I could be Stage 4 End Stage Cirrhosis with a Meld of 6 but I'm thankful for it...I guess... Can this all end anytime soon? I suspect I'm in for the long haul...Im pushing 69 maybe I'll just die from itching...lol

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@jeanne5009 I too find it very confusing how a person can have such a low MELD yet be Stage 4 End Stage. From what I understand the MELD indicates whose needs are most imminent, but then how can you be Stage 4 and not be in dire need of a transplant?

With that MELD it does seem like you may be in for a long haul. I received my transplant two days prior to my 69th birthday, I was MELD 28, and due for an increase in my MELD at that point. They were not anticipating that I would have a transplant for a couple of more months but somehow things happened for me sooner than anticipated, probably either because of blood type or size. I happen to have been given a lot of information about my donor from her parents and she was the same height as me.

I cannot imagine the itching. Obviously, it won't kill you but it must be so extremely annoying.
It will be interesting to hear what the allergist finds out.
JK

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REGARDING ITCHING. Have any of you tried full body exfoliation? Nothing worked for me until I bought a mesh washtowel (from WalMart) and changed to Dove Extra Sensitive Body Wash. I chose the towel so that I could wash it out more completely than a poof and I could spread it out across my back and get a good scrub. Good luck to anyone else that finds relief in this manner.

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@taarthi

@rosemarya I am amazed at how awesome you are that you remember everyone so well and truly connect with them. What a kind person you are!

I have not started packing yet. I plan to do that the weekend of December 15 as we would leave home on December 18. We did buy loose fitting sweat pants and shirts, comfortable slip on shoes, pillow. So it is just a matter of putting them in a bag. I am planning to pack my make up kit, personal hygiene items, chapstick, socks. My husband gifted me a new laptop and a wireless headset that I need to pack too. I don't mean to sound braggy but little things make me happy. Someone at my workplace told me to enjoy the 8 weeks off of work and I said I will! I am hoping that everything goes well. Let us see.

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@taarthi, I want to take a moment and drop in and ask how are you doing?
It has been busy here on Connect as we continually welcome new members and make new friends😃. I hope that your surgery (and husband's) surgery went well, and that you are recovering comfortably.
I would love to hear from you, dear friend thru Connect.
Rosemary

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@rosemarya Hi Rosemary. Well after the 3 surgeries last month I'm back to hospital again tomorrow morning. Numbers are trending too high again and they believe blocked bile ducts are the reason this time. I looked into this and apparently almost 50% of liver transplant patients go through the same thing. I am just sharing my experiences so that others can be aware that once the transplant is done there can be all sorts of complications. Some people will have none. So far angioplast, artery repair, type 2 diabetes and blocked bile ducts have been on my list. Every stage is a step forward though.

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@gaylea1

@rosemarya Hi Rosemary. Well after the 3 surgeries last month I'm back to hospital again tomorrow morning. Numbers are trending too high again and they believe blocked bile ducts are the reason this time. I looked into this and apparently almost 50% of liver transplant patients go through the same thing. I am just sharing my experiences so that others can be aware that once the transplant is done there can be all sorts of complications. Some people will have none. So far angioplast, artery repair, type 2 diabetes and blocked bile ducts have been on my list. Every stage is a step forward though.

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gaylea, I admire your positive attitude! "Every stage is a step forward though".
Your message is a very important one and I want to thank you for sharing it. When we see numbers like that (50%) we are given assurance that we are not alone. Throughout my entire disease and transplant journey, even with my dear husband and family at my side, I felt alone in the sense that no one else was experiencing the same symptoms as me.

I'm praying for your numbers to return to normal, even if an intervention is needed.
Did you have an opportunity to have a Christmas/New Year with family?

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@gaylea1

@rosemarya Hi Rosemary. Well after the 3 surgeries last month I'm back to hospital again tomorrow morning. Numbers are trending too high again and they believe blocked bile ducts are the reason this time. I looked into this and apparently almost 50% of liver transplant patients go through the same thing. I am just sharing my experiences so that others can be aware that once the transplant is done there can be all sorts of complications. Some people will have none. So far angioplast, artery repair, type 2 diabetes and blocked bile ducts have been on my list. Every stage is a step forward though.

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@gaylea1 I didn't have many of your complications, but the diabetes one is pretty common I think due to prednisone. I had to be on insulin for a while until they decreased my prednisone dosage.
I hope the bile duct problem is easily resolved. Looking forward to hearing that that everything is A-ok.
JK

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