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?

@rosemarya

@threerrr3, I am happy that you will soon receive your kidney. Your sister is an angel on earth.

I have both a transplanted liver, and kidney. I got them both at the same time from same donor. What you said about medications being hard on our organs is something does concern me. Was your kidney monitored after your liver transplant? When did you (or doctors)first notice that your kidneys were affected? How did they know?

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They monitor it and every year the creatine level and gift clearance got worse by a few points but after 20 years the clearance had gotten real bad ..so it’s all about the numbers .. but I think now more then back then when I had my liver transplant I was on high doses of prograf and imuran and prednisone .. today I don’t think they start you and leave you on such high doses..they tapered them down to 1/4 of what o was taking and I’m good with that but it was to late on my kidneys .. so we all have to monitor our own blood test also .. we know our bodies more then anyone and if something doesn’t feel right ask and get checked .. all in all I think if you watch your creatine level it will go up but point that out to the doctors or ask ..I would like to thank everyone for all the messages and advice and tips so greatly appreciated..
Thank you Rose

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@almula

Hi, I had my liver transplant last September but I started lifting after 4 months. They told me I must make some exercises to return back my muscles. I like to share the post-transplant experience. Best lucks and have a nice weekend. Jasem

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Good for you ! Are you saying lifting weights ? Wow that’s awesome ..Yes I’m so burnt out right now , so I’m hoping to be able to work out more after ..thanks for the help ❤️

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@threerrr3

They monitor it and every year the creatine level and gift clearance got worse by a few points but after 20 years the clearance had gotten real bad ..so it’s all about the numbers .. but I think now more then back then when I had my liver transplant I was on high doses of prograf and imuran and prednisone .. today I don’t think they start you and leave you on such high doses..they tapered them down to 1/4 of what o was taking and I’m good with that but it was to late on my kidneys .. so we all have to monitor our own blood test also .. we know our bodies more then anyone and if something doesn’t feel right ask and get checked .. all in all I think if you watch your creatine level it will go up but point that out to the doctors or ask ..I would like to thank everyone for all the messages and advice and tips so greatly appreciated..
Thank you Rose

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@threerrr3 My creatinine levels went up from the immunosuppressants after my liver transplant too. I have to have lab work monthly. I have been directed to drink 80 – 100 ounces of non-caffeinated beverages a day, and doing that my creatinine is under control.
JK

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@contentandwell

@threerrr3 My creatinine levels went up from the immunosuppressants after my liver transplant too. I have to have lab work monthly. I have been directed to drink 80 – 100 ounces of non-caffeinated beverages a day, and doing that my creatinine is under control.
JK

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That is so good to know that they have figured out away to help slow that down .. I’m sure over the last 21 years there have been a lot of discoveries in treatment . So happy it worked for you .. good for others to know out there also .. ❤️

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@charicen

I have had a total of three transplants. My first was a liver transplant in April of 1995 (age 22). My second one was another liver transplant in May 2007(age 34) due to failure of the first transplant due to unclear cause. I then had a kidney transplant in November 2012 (age 39) due to the antirejection meds taking their toll on my kidneys. I was fortunate enough to have my mom be my living donor for my kidney transplant. I am coming up on my 46th birthday this coming Tuesday (December 4). I am thankful for all my donors and being able to still be here. Prior to receiving my kidney I spent 2 years and 3 months on dialysis, which is definitely not a fun way to live.

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Hi was wondering how you we’re doing ? I’m going to be having my kidney transplant soon .. as we had talked before about having multiple transplants .. of my liver transplant was on 1998 and now kidneys on 2019 .. I was wondering with all you have been thru how are you doing today ? I know Transplant’s don’t last forever which is sad but I feel we can make our best effort to prove that wrong …I guess I’m quite nervous about my up coming kidney transplant.. it’s not so much the transplant I guess my biggest fear is how long is my liver going to hold out even after I get a new kidney .. I guess I’m just talking out my fears ..

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@threerrr3

Hi was wondering how you we’re doing ? I’m going to be having my kidney transplant soon .. as we had talked before about having multiple transplants .. of my liver transplant was on 1998 and now kidneys on 2019 .. I was wondering with all you have been thru how are you doing today ? I know Transplant’s don’t last forever which is sad but I feel we can make our best effort to prove that wrong …I guess I’m quite nervous about my up coming kidney transplant.. it’s not so much the transplant I guess my biggest fear is how long is my liver going to hold out even after I get a new kidney .. I guess I’m just talking out my fears ..

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@threerrr3 There is a lot to be said about being aware of your transplant, your health, your diet, your exercise plan, and how you live your life; it's all connected. Making sure you have the best that you can out of everything goes a long ways to keeping transplanted organs going healthfully. In our monthly kidney support group we have seen people that have kidneys transplanted over 40 years ago! There's also the markers for a transplanted organ, that is how well a match the organ was to the recipient. Because this gift is coming from your sister you may have an up Point on that. Sitting here in cold California hoping that you have a successful surgery and uneventful recovery!
Ginger

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@gingerw

@threerrr3 There is a lot to be said about being aware of your transplant, your health, your diet, your exercise plan, and how you live your life; it's all connected. Making sure you have the best that you can out of everything goes a long ways to keeping transplanted organs going healthfully. In our monthly kidney support group we have seen people that have kidneys transplanted over 40 years ago! There's also the markers for a transplanted organ, that is how well a match the organ was to the recipient. Because this gift is coming from your sister you may have an up Point on that. Sitting here in cold California hoping that you have a successful surgery and uneventful recovery!
Ginger

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Thank you needed a little reassurance ❤️

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@threerrr3

Hi was wondering how you we’re doing ? I’m going to be having my kidney transplant soon .. as we had talked before about having multiple transplants .. of my liver transplant was on 1998 and now kidneys on 2019 .. I was wondering with all you have been thru how are you doing today ? I know Transplant’s don’t last forever which is sad but I feel we can make our best effort to prove that wrong …I guess I’m quite nervous about my up coming kidney transplant.. it’s not so much the transplant I guess my biggest fear is how long is my liver going to hold out even after I get a new kidney .. I guess I’m just talking out my fears ..

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@threerrr3, I want to tag @charicen, to this conversation because I don't know if she got your message. I also want to bring in 2 other members who have had a 2nd transplant.

@mnemeth318, How are you getting along since your liver transplant surgery in December? I want to introduce you to this conversation because you have received a 2nd transplant. @threerrr will be receiving her 2nd transplanted organ in 2 weeks. What was the 2nd experience like for you? Do you have any words of reassurance that you might offer to her?

@ca426 – Charlie, With your experience with kidney transplants, I am tagging you to this conversation. I hope you are doing well.

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Hi to all. I introduced "This and That" Discussion nearly 2 years ago and during those 2 years, we have shared, cried, celebrated, and encouraged each other thru a variety of transplant issues.
I invite you, past, present, and new members to send a note and share an update. How are you doing? Any new questions? What can we celebrate?

I'll go first. Today, I feel like a lazy achy old lady. I took a long nap, and bundled up in blankets because I was cold and developing a fever. It has hovered at 100,3 and my transplant information says that at 101 to 'call doctor'. Of course it is a Saturday afternoon and the doctor is not available until Monday! I do have access to immediate care until 8 PM if I need it. I feel good, but plan to stay hydrated and to momitor tonight.
Has anyone else ever had this experience? What do you do?

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@rosemarya

Hi to all. I introduced "This and That" Discussion nearly 2 years ago and during those 2 years, we have shared, cried, celebrated, and encouraged each other thru a variety of transplant issues.
I invite you, past, present, and new members to send a note and share an update. How are you doing? Any new questions? What can we celebrate?

I'll go first. Today, I feel like a lazy achy old lady. I took a long nap, and bundled up in blankets because I was cold and developing a fever. It has hovered at 100,3 and my transplant information says that at 101 to 'call doctor'. Of course it is a Saturday afternoon and the doctor is not available until Monday! I do have access to immediate care until 8 PM if I need it. I feel good, but plan to stay hydrated and to momitor tonight.
Has anyone else ever had this experience? What do you do?

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Hi Rosemary, I'm actually doing good it's been 1 year and 1 month since I was hit by the car but I'm getting stronger everyday I passed my yearly physical in January of this year it's hard to believe I am 8 years post transplant(heart) I have finished physical therapy now and I work out at the YMCA here but found out that my right leg has arthritis in it now where the steel screws and plate is that's the only thing that isn't as strong as I would like is my right leg the pain never goes away and I can't take any anti inflammatory medication for due to transplant I still struggle with anxiety and the PTSD but I thank God for my counselor she helps a lot the only problem I have is I still have brain fog after all the surgeries I had to have last year and it frustrates me because I have trouble remembering the dimple things that I used to know and remember just wanted to say Hi and update everyone on how I'm doing I may not be on here a lot but I try to check my posts for mayo connect every day I'm just working on getting stronger and better right now thanks for listening when I need to talk.
Always Glinda

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@rosemarya

Hi to all. I introduced "This and That" Discussion nearly 2 years ago and during those 2 years, we have shared, cried, celebrated, and encouraged each other thru a variety of transplant issues.
I invite you, past, present, and new members to send a note and share an update. How are you doing? Any new questions? What can we celebrate?

I'll go first. Today, I feel like a lazy achy old lady. I took a long nap, and bundled up in blankets because I was cold and developing a fever. It has hovered at 100,3 and my transplant information says that at 101 to 'call doctor'. Of course it is a Saturday afternoon and the doctor is not available until Monday! I do have access to immediate care until 8 PM if I need it. I feel good, but plan to stay hydrated and to momitor tonight.
Has anyone else ever had this experience? What do you do?

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Ive had those low fevers also and usually a couple of Tylenol and that takes care of it. Luckily I've never hit the magic 101.4 level the drs required a phone call. I think its due to dyhadratetion also and that was confirmed once with the team. I myself are doing good but still fighting this side problem of CMV from the donor heart and Parvio B19 virus. Neither causes any symptoms but twice now i had to get whole blood due to low hemaglobin. They tried this last time a week in hosp to receive IVIG antibodies and will find out in a couple of weeks if it killed the b19. But i feel great working out and playing golf no real complaints.

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@rosemarya

Hi to all. I introduced "This and That" Discussion nearly 2 years ago and during those 2 years, we have shared, cried, celebrated, and encouraged each other thru a variety of transplant issues.
I invite you, past, present, and new members to send a note and share an update. How are you doing? Any new questions? What can we celebrate?

I'll go first. Today, I feel like a lazy achy old lady. I took a long nap, and bundled up in blankets because I was cold and developing a fever. It has hovered at 100,3 and my transplant information says that at 101 to 'call doctor'. Of course it is a Saturday afternoon and the doctor is not available until Monday! I do have access to immediate care until 8 PM if I need it. I feel good, but plan to stay hydrated and to momitor tonight.
Has anyone else ever had this experience? What do you do?

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@rosemarya
Out of the question…you are not allowed to be sick! I dont know how these things go but how long afer transplant do you worry about rejection? Curl up and snooze…drink lots of fluids and take what ever mefs you have been instructed. Of course its Saturday…just to make us worry a little more…lol
I go to the local cardio Dr. On Monday to see what he thinks. I had an ultra sound and bloodwork and will discuss all that with my PCP Tues. Have a 2 day appt with Mayo in Jax on the 16th. Thats a 4 hour trip but always well worth it
The good news is..my faughter Emily is coming to FL to visit next Sunday.
We will be doing some serious boating and beaching!
Please keep us posted…Im sending uou virtual hugs, prayers and chicken soup!

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@danab

Ive had those low fevers also and usually a couple of Tylenol and that takes care of it. Luckily I've never hit the magic 101.4 level the drs required a phone call. I think its due to dyhadratetion also and that was confirmed once with the team. I myself are doing good but still fighting this side problem of CMV from the donor heart and Parvio B19 virus. Neither causes any symptoms but twice now i had to get whole blood due to low hemaglobin. They tried this last time a week in hosp to receive IVIG antibodies and will find out in a couple of weeks if it killed the b19. But i feel great working out and playing golf no real complaints.

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@heart people
Im having some heart issues to go along with my Stsge 4 cirrhosis. Mayo is going to check me out so I will be asking you all to share with me.
Ive had this liver stuff for 3 years snd understand it pretty well…the heart is a whole new ball game. I need a new dictionary for this!! Will keep you posted

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@jeanne5009

@heart people
Im having some heart issues to go along with my Stsge 4 cirrhosis. Mayo is going to check me out so I will be asking you all to share with me.
Ive had this liver stuff for 3 years snd understand it pretty well…the heart is a whole new ball game. I need a new dictionary for this!! Will keep you posted

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Jeanne, we are all here for you. I'm 14 months post heart and remember no question is stupid ask anything and i bet someone has had the same experience. Good luck Mayo is the best.

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@rosemarya

Hi to all. I introduced "This and That" Discussion nearly 2 years ago and during those 2 years, we have shared, cried, celebrated, and encouraged each other thru a variety of transplant issues.
I invite you, past, present, and new members to send a note and share an update. How are you doing? Any new questions? What can we celebrate?

I'll go first. Today, I feel like a lazy achy old lady. I took a long nap, and bundled up in blankets because I was cold and developing a fever. It has hovered at 100,3 and my transplant information says that at 101 to 'call doctor'. Of course it is a Saturday afternoon and the doctor is not available until Monday! I do have access to immediate care until 8 PM if I need it. I feel good, but plan to stay hydrated and to momitor tonight.
Has anyone else ever had this experience? What do you do?

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@rosemarya the only time I had a fever was when I had legionnaires disease and my temperature was 103. That definitely required a drive to Boston. I was so happy it was just something that they could take care of with antibiotics. Overall that hospital stay wasn’t too bad! Except for the food – awful.
JK

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