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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.

IWantToBelieve | @IWantToBelieve | Aug 13, 2017
In reply to @contentandwell "@rosemarya Rosemary, thanks for inquiring. I am not sure where I last left things, but I..." + (show)
@contentandwell

@rosemarya Rosemary, thanks for inquiring. I am not sure where I last left things, but I am now on sirolimus, three in the morning and no tacrolimus. Initially I was still taking one tac in the morning and one in the evening (I had been doing three both times). I presume sirolimus must have more of a time delay and stay in your system longer since I no longer take it in the evening. I also still take prednisone, omeprazole, and a low dose aspirin in the morning, plus I am still taking imodium two times a day and now amoxicillin four times a day due to a mouth infection! I feel like my life is ruled by pills.

I am still doing weekly lab tests. I am sure when they feel my numbers are stable that will get stretched out to monthly again. My creatinine was pretty good last week, lower than what they 1.4 they are considering to be my baseline.
When I went for my lab work last Monday my regular phlebotomist was on vacation so I had a different person. She was very nice but she could not hit the spot. She kept putting it in and moving it around, she tried both arms, and then with my consent tried a third time. The third time she was able to get enough out to fill the four vials, thankfully. I swear if she is there tomorrow I will walk out. She is so nice but it got painful and I normally do not flinch at this.

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@contentandwell - having a phlebotimist that can't hit the mark if TERRIBLE. I have asked for another person before but my local lab only has one person so I'm not sure what I would do. I just cringed reading about her moving the needle around. That really hurts!

REPLY
JK | @contentandwell | Aug 13, 2017

@rosemarya The phlebotomist was so nice, and she honestly felt terrible about the trouble getting my blood that I felt sorry for her. I just hope she is not there tomorrow.
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 13, 2017
In reply to @contentandwell "@rosemarya Rosemary, thanks for inquiring. I am not sure where I last left things, but I..." + (show)
@contentandwell

@rosemarya Rosemary, thanks for inquiring. I am not sure where I last left things, but I am now on sirolimus, three in the morning and no tacrolimus. Initially I was still taking one tac in the morning and one in the evening (I had been doing three both times). I presume sirolimus must have more of a time delay and stay in your system longer since I no longer take it in the evening. I also still take prednisone, omeprazole, and a low dose aspirin in the morning, plus I am still taking imodium two times a day and now amoxicillin four times a day due to a mouth infection! I feel like my life is ruled by pills.

I am still doing weekly lab tests. I am sure when they feel my numbers are stable that will get stretched out to monthly again. My creatinine was pretty good last week, lower than what they 1.4 they are considering to be my baseline.
When I went for my lab work last Monday my regular phlebotomist was on vacation so I had a different person. She was very nice but she could not hit the spot. She kept putting it in and moving it around, she tried both arms, and then with my consent tried a third time. The third time she was able to get enough out to fill the four vials, thankfully. I swear if she is there tomorrow I will walk out. She is so nice but it got painful and I normally do not flinch at this.

Jump to this post

@contentandwell, I know what you mean about pills ruling your life.! yesterday morning as I was grabbing my weekly pill container, I dropped it and 5 days worth of pills spilled all over my kitchen floor! Luckily I found them all. I don't usually eat off the floor - but I made an exception here!
Phlebotomists are either good or bad - no in between!
Rosemary

REPLY
JK | @contentandwell | Aug 13, 2017

@rosemarya Rosemary, thanks for inquiring. I am not sure where I last left things, but I am now on sirolimus, three in the morning and no tacrolimus. Initially I was still taking one tac in the morning and one in the evening (I had been doing three both times). I presume sirolimus must have more of a time delay and stay in your system longer since I no longer take it in the evening. I also still take prednisone, omeprazole, and a low dose aspirin in the morning, plus I am still taking imodium two times a day and now amoxicillin four times a day due to a mouth infection! I feel like my life is ruled by pills.

I am still doing weekly lab tests. I am sure when they feel my numbers are stable that will get stretched out to monthly again. My creatinine was pretty good last week, lower than what they 1.4 they are considering to be my baseline.
When I went for my lab work last Monday my regular phlebotomist was on vacation so I had a different person. She was very nice but she could not hit the spot. She kept putting it in and moving it around, she tried both arms, and then with my consent tried a third time. The third time she was able to get enough out to fill the four vials, thankfully. I swear if she is there tomorrow I will walk out. She is so nice but it got painful and I normally do not flinch at this.

REPLY
3 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 12, 2017
In reply to @amynewheart "Sorry I have been mia. Was in hospital for over a week due to severe rejection...." + (show)
@amynewheart

Sorry I have been mia. Was in hospital for over a week due to severe rejection. My body really took a beating from anti rejection meds this time. Hope everyone is doing well

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Hi Amy @amynewheart

I see that you've been home from the hospital for a while now. How are you doing? Did you have your repeat biopsy yet?

Teresa

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 12, 2017

@contentandwell, Jane, I feel as if I have lost track of your post transplant dealings! How are you doing with the med changes? How are you feeling? Are you still doing the weekly labs? Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 12, 2017
In reply to @herbswife "My husband has just been diagnosed with liver disease in the last month, I am desperately..." + (show)
@herbswife

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

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@lexiopo, I'm thinking about you. Hope you and husband are making progress in your efforts to move forward. Have you found the information that you were waiting for?
Hugs and Strength,
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 3, 2017
In reply to @amynewheart "Sorry I have been mia. Was in hospital for over a week due to severe rejection...." + (show)
@amynewheart

Sorry I have been mia. Was in hospital for over a week due to severe rejection. My body really took a beating from anti rejection meds this time. Hope everyone is doing well

Jump to this post

@amynewheart, I hope you are able to get some rest. That will help your recovery. I have learned that prednisone does have a bad reputation - but on the bright side - it does the task it is designed to do.
I'm not familiar with heart biopsy. But I have some on native and transplanted liver, and on transplanted kidney. For those, the anticipation was worse than the actual procedure; I hope that is how it is for you.
Hugs,
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 3, 2017
In reply to @amynewheart "Sorry I have been mia. Was in hospital for over a week due to severe rejection...." + (show)
@amynewheart

Sorry I have been mia. Was in hospital for over a week due to severe rejection. My body really took a beating from anti rejection meds this time. Hope everyone is doing well

Jump to this post

@amynewheart, I'm saying prayers for you and for your doctors. Rosemary

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IWantToBelieve | @IWantToBelieve | Aug 2, 2017
In reply to @amynewheart "Sorry I have been mia. Was in hospital for over a week due to severe rejection...." + (show)
@amynewheart

Sorry I have been mia. Was in hospital for over a week due to severe rejection. My body really took a beating from anti rejection meds this time. Hope everyone is doing well

Jump to this post

@amynewheart - so sorry to hear about this. I can't relate but when my Dad was often hospitalized he was told it takes one week to recover from one week in the hospital. I know your sleep is always interrupted, not in your bed, and clearly quite sick. Plus, if you are dealing with rejection does that mean your heart is not functioning to its' full potential? If so, that would explain your exhaustion!

Are they taking biopsies of your heart? How invasive are the biopsies? Considering a second opinion if they don't get any answers? Hoping this gets resolved and be kind to yourself and give yourself time to recover.

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