1. < Transplants
Mentor

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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 16, 2020
In reply to @livertrex "Hi I live in western Colorado had my transplant in August of last year in Arizona...." + (show)
@livertrex

Hi I live in western Colorado had my transplant in August of last year in Arizona. I'm feeling fine. Still a few complications with dizziness. But overall I am getting out. Now the State wants me to stay home. We only have one case in our county. I think I'm okay and risk is low. What does everyone else think? I would like to go to church.

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I just sent you a message. Would you copy your question in reply to my new post?

REPLY
livertrex | @livertrex | Mar 16, 2020
In reply to @rosemarya "Announcing - New Group Dedicated To COVID-19: @2011panc,@livertrex,@joanaiken, @glinda, @jodeej, @dcwilkie,@jeanne5009, @jeanne5009, @estrada53, @rodney9999, @almula, @wildcat,..." + (show)
@rosemarya

Announcing - New Group Dedicated To COVID-19:

@2011panc,@livertrex,@joanaiken, @glinda, @jodeej, @dcwilkie,@jeanne5009, @jeanne5009, @estrada53, @rodney9999, @almula, @wildcat, -be sure to add your thoughts to the discussion COVID-19 in Transplant .

COVID-19: Let's Stick Together Virtually
https://connect.mayoclinic.org/group/covid-19/

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Hi I live in western Colorado had my transplant in August of last year in Arizona. I'm feeling fine. Still a few complications with dizziness. But overall I am getting out. Now the State wants me to stay home. We only have one case in our county. I think I'm okay and risk is low. What does everyone else think? I would like to go to church.

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 16, 2020

Announcing - New Group Dedicated To COVID-19:

@2011panc,@livertrex,@joanaiken, @glinda, @jodeej, @dcwilkie,@jeanne5009, @jeanne5009, @estrada53, @rodney9999, @almula, @wildcat, -be sure to add your thoughts to the discussion COVID-19 in Transplant .

COVID-19: Let's Stick Together Virtually
https://connect.mayoclinic.org/group/covid-19/

REPLY
1 reply
jeanne5009 | @jeanne5009 | Feb 25, 2020
In reply to @contentandwell "Hi, @beckyy39 I too welcome you to Connect. I also dealt with HE episodes from NASH..." + (show)
@contentandwell

Hi, @beckyy39 I too welcome you to Connect. I also dealt with HE episodes from NASH cirrhosis. My episodes were isolated, when I was not having one I was perfectly cognizant, and I either woke up with that fog or I could predict it coming because I would get a very upset stomach and feel tired. Since they were predictable I was able to drive right up until prior to having a transplant in September 2016, even driving alone on 3 hour drives up until the last summer before my transplant. At that point, I told my husband I did not feel comfortable doing that anymore. That was after having to resume taking lactulose.
I had a number of hospitalizations also due to HE episodes. Most of my episodes were mild enough that I could just sleep them off but a few were more severe and landed me in the hospital for about 3 days generally.
Has your hepatologist considered putting you on xifaxan? After I was diagnosed I went to Boston, to Mass General Hospital, and the hepatologist there prescribed xifaxan. I was able to drop lactulose and the xifaxan alone kept me from having an HE episode for almost a year. Then when I did have another that was signal that my liver had deteriorated further and I had to resume lactulose along with the xifaxan.
I was prescribed Lasix and then Spironolactone two or three months prior to my transplant. Prior to that my fluid retention did not require it. At that point though, about six weeks before I received my transplant, I gained about 35 pounds of fluid.
If you do have any questions, it sounds as if we have some common problems from your situation -- have you been diagnosed as having cirrhosis? -- please feel free to ask away.
JK

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Nearly identical to my path. Been on Rifaximin 2 years same for the diuretics. Meld still 8. Waiting for the liver to revolt..tee hee. None of us are alone...

REPLY
JK | @contentandwell | Feb 24, 2020
In reply to @beckyy39 "Diabetes and fatty liver - I have been an auditor for years and am still waiting..." + (show)
@beckyy39

Diabetes and fatty liver - I have been an auditor for years and am still waiting to hear from SS disability so finances have been a worry. I live 30 miles from the nearest hospital and my doctors and have had 5 hospitalizations since December 1. Because I had 2 severe inpatient visits due to hepatic encephalitis with amnesia my doctor said I can't drive originally but now that I'm on Lactulose and Spiractalone, he is allowing me a 5 mile radius with another licensed driver in the car. I live with my 17 year old son who is my caregiver, but he only has his learners permit and is afraid to have me continue teaching him as it scared him greatly when those episodes happened and he's the one that saw it and had to call the ambulance. I'll be going to Jacksonville, FL Mayo Clinic and have to ride on non-emergency transportation.

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Hi, @beckyy39 I too welcome you to Connect. I also dealt with HE episodes from NASH cirrhosis. My episodes were isolated, when I was not having one I was perfectly cognizant, and I either woke up with that fog or I could predict it coming because I would get a very upset stomach and feel tired. Since they were predictable I was able to drive right up until prior to having a transplant in September 2016, even driving alone on 3 hour drives up until the last summer before my transplant. At that point, I told my husband I did not feel comfortable doing that anymore. That was after having to resume taking lactulose.
I had a number of hospitalizations also due to HE episodes. Most of my episodes were mild enough that I could just sleep them off but a few were more severe and landed me in the hospital for about 3 days generally.
Has your hepatologist considered putting you on xifaxan? After I was diagnosed I went to Boston, to Mass General Hospital, and the hepatologist there prescribed xifaxan. I was able to drop lactulose and the xifaxan alone kept me from having an HE episode for almost a year. Then when I did have another that was signal that my liver had deteriorated further and I had to resume lactulose along with the xifaxan.
I was prescribed Lasix and then Spironolactone two or three months prior to my transplant. Prior to that my fluid retention did not require it. At that point though, about six weeks before I received my transplant, I gained about 35 pounds of fluid.
If you do have any questions, it sounds as if we have some common problems from your situation -- have you been diagnosed as having cirrhosis? -- please feel free to ask away.
JK

REPLY
1 reply
JK | @contentandwell | Feb 22, 2020
In reply to @gaylea1 "@rosemarya @contentandwell so...slammed again! So I had the skin cancer removed (They got it all). Now..." + (show)
@gaylea1

@rosemarya @contentandwell so...slammed again! So I had the skin cancer removed (They got it all). Now I have shingles and it hurts!! My ERCP to remove my metal stent is booked for March 16th (I'll have to phone to see if I can undergo this) but the past ERCPs ended up with me having pancreatitis. Now that's REALLY painfully. Being immunosuppressed is quite a battle. I hope I get a break soon. 😌

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@gaylea1 I'm glad they got all of the cancer but that's a shame that you have shingles now. My transplant center has not approved getting the shingles vaccine yet so I worry about getting it. Apparently there is a protein in the vaccine that increases immunity which of course they do not want.
You are right, immunosuppression really is a pain but when you consider the alternative it's better than that. I hope the removal of the stent is without any negative effects. I've had numerous small things building up too. I saw my PCP this week and told him I felt like I was being stoned to death with small pebbles. Then, of course, I get on Connect and I see the problems that others have and I realize that mine are not so bad. I have much to be thankful for.
You have been so strong through all of your battles, that definitely has an impact, that trying to stay positive.
JK

REPLY
gaylea1 | @gaylea1 | Feb 22, 2020
In reply to @jeanne5009 "@gaylea1 Hoping the finally get you back on track. You are stronger than strong and give..." + (show)
@jeanne5009

@gaylea1
Hoping the finally get you back on track. You are stronger than strong and give all of us renewed energy. I'll be praying for you....God loves us....

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@jeanne5009 thank you so much for your support 💚 Healing prayers are so effective and I appreciate it so much.

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jeanne5009 | @jeanne5009 | Feb 22, 2020
In reply to @gaylea1 "@rosemarya your unrelenting support is so appreciated 💚 I don't know if it has to be..." + (show)
@gaylea1

@rosemarya your unrelenting support is so appreciated 💚 I don't know if it has to be replaced or if the bile duct is now open for business. I won't find out until the procedure. In the meantime, you know me, onwards and upwards. I'll get through this rough patch.

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@gaylea1
Hoping the finally get you back on track. You are stronger than strong and give all of us renewed energy. I'll be praying for you....God loves us....

REPLY
1 reply
gaylea1 | @gaylea1 | Feb 21, 2020
In reply to @gingerw "@gaylea1 Dang it all, anyway, right? We're here for you, and I just know your strength..." + (show)
@gingerw

@gaylea1 Dang it all, anyway, right? We're here for you, and I just know your strength is going to help you handle this.
Ginger

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@gingerw thanks so much for your support! Its been a rocky road post transplant but I wouldn't ever want to go back to my pre transplant days. I'm greatful every day regardless of the bumps in the road. 💚

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