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 group.

I'm relatively new on this journey. I was diagnosed with liver failure the end of December and go for evaluation mid March

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@beckyy39

I'm relatively new on this journey. I was diagnosed with liver failure the end of December and go for evaluation mid March

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@beckyy39, I am happy to welcome you to Connect. I am a a liver and kidney recipient, and I assure you that you are not going to be alone on this journey. We have many members like you, like me, who experience a frightening diagnosis, and who have the experience of that 1st appointment.
Beckyy39, I would like to ask you to share a little more about yourself so that I can connect you with others who are like you. What is the diagnosed liver condition that is cause fot the liver failure? Where will you be going for the evaluation and eventual transplant? What is your biggest question/concern ?

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@rosemarya

@beckyy39, I am happy to welcome you to Connect. I am a a liver and kidney recipient, and I assure you that you are not going to be alone on this journey. We have many members like you, like me, who experience a frightening diagnosis, and who have the experience of that 1st appointment.
Beckyy39, I would like to ask you to share a little more about yourself so that I can connect you with others who are like you. What is the diagnosed liver condition that is cause fot the liver failure? Where will you be going for the evaluation and eventual transplant? What is your biggest question/concern ?

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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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@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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I have previously been a governmental and non-profit auditor, but due to memory issues and inability to drive to clients, I'm not able to work. Having been really independent all my life, being home bound is a challenge.

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@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 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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@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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@beckyy39, You have the one symptom that I did not experience. However I can link you to members who do have experience with HE.

Here is a link that will take you directly to pg 30 where there are 4-5 pages of conversation about HE(Hepatic Encephalopathy) Just click on the link.
To ask a question – go to the reply as you have done here to reach me. Address the member by his/her @name and they will be notified.

GroupsTransplantsLiver transplant support group
https://connect.mayoclinic.org/discussion/liver-support-group/?pg=30

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@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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The support from this site helpful. I have been traveling down this road since 2006. I was taking lactulose and last year and I ended up going to ER and diagnosed with liver cancer last February. Things happened fast and I received a liver transplant at Mayo AZ in August. Hold on but Mayo has your back and will support you all the way..

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@beckyy39

I have previously been a governmental and non-profit auditor, but due to memory issues and inability to drive to clients, I'm not able to work. Having been really independent all my life, being home bound is a challenge.

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@beckyy39 Losing my independence was not difficult for me until I started feeling better and could not find people to drive me. Fortunately for me, I had housekeepers who were also willing to give me rides and I was able to schedule most trips around their schedules. One good thing about being housebound, it really cuts down on the impulse shopping in waiting lines at stores. lol Do you have activities or hobbies that you can do at home to keep yourself involved? I have many crafting avenues to follow, as well as reading and writing, so I always have a number of choices of things to do without leaving home. Now I sometimes resent having to go out. Hopefully you will make it through this time relatively easily. Blessings.

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@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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@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….

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@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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@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

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