At home with my new liver transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Aug 27, 2016

Coming home after an organ transplant is one of my fondest memories! However, sometimes being at home might seem a bit overwhelming. I remember the fear of being away from the secure environment and immediate care that my transplant team provided. Even though, I was a phone call away from my team, I would have welcomed the opportunity of talking to someone who was a recipient. So, I begin this discussion. Congratulations on your life saving transplant! You are not alone. Welcome.

@swordfish

I’M HANGIN ON ROSEMARY GOODMORNIN, HOWEVER I’M NOT LOOKING FORWARD TO THE DR.s VISIT THIS TIME.IM WORRIED ALL NITE HE’S GOING TO SWAB IN THÈRE AGAIN, BEEN UP ALL NITE AGAIN.WELL C WHAT HAPPENS,THANKS

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Good morning, @swordfish. Once again, you are in the best place for care right now. It is important for the doctor to know exactly what is going on with your situation. And sometimes that is uncomfortable. Try not to dwell on the negatives and instead try to focus on getting better. Is your doctor or nurses aware of your anxiety? Please let them know about it and about any pain you are experiencing. Hope your day gets better, and that your treatment continue to move forward. Rosemary

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@swordfish

I’M HANGIN ON ROSEMARY GOODMORNIN, HOWEVER I’M NOT LOOKING FORWARD TO THE DR.s VISIT THIS TIME.IM WORRIED ALL NITE HE’S GOING TO SWAB IN THÈRE AGAIN, BEEN UP ALL NITE AGAIN.WELL C WHAT HAPPENS,THANKS

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THANKS AGAIN

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@swordfish

I’M HANGIN ON ROSEMARY GOODMORNIN, HOWEVER I’M NOT LOOKING FORWARD TO THE DR.s VISIT THIS TIME.IM WORRIED ALL NITE HE’S GOING TO SWAB IN THÈRE AGAIN, BEEN UP ALL NITE AGAIN.WELL C WHAT HAPPENS,THANKS

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@swordfish, have you asked your doctor about sepsis? Whatever answer you get, it’s crucial to ask as soon as possible — before septic shock sets in.

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@swordfish

I’M HANGIN ON ROSEMARY GOODMORNIN, HOWEVER I’M NOT LOOKING FORWARD TO THE DR.s VISIT THIS TIME.IM WORRIED ALL NITE HE’S GOING TO SWAB IN THÈRE AGAIN, BEEN UP ALL NITE AGAIN.WELL C WHAT HAPPENS,THANKS

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THEY FOUND BACTERIA IN THE INFECTION SITE FROM YESTRDAY, I GUESS I’M UNDER QUARETINE.THE DR. N LIVER TEAM COORDINTR R COMING TO TALK TO ME,THIS ISN’T GOOD AT ALL,WORRIED.

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@swordfish

I’M HANGIN ON ROSEMARY GOODMORNIN, HOWEVER I’M NOT LOOKING FORWARD TO THE DR.s VISIT THIS TIME.IM WORRIED ALL NITE HE’S GOING TO SWAB IN THÈRE AGAIN, BEEN UP ALL NITE AGAIN.WELL C WHAT HAPPENS,THANKS

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The important thing is to identify the type of infection so that the correct antibiotic can be administered. Do not assume that a visit from the transplant team coordinator is a bad thing; on the contrary, he/she will be the one to explain to you what is going on and what treatment might be needed. Your coordinator is there to direct you toward a successful recovery. Ask your questions. and tell your fears and concerns. If you are feeling too ill or weak, have someone else do it for you. It is your right to know what is happening.
I understand your fears. I once had sepsis. Not fun! Infection is very serious for a transplant patient. But, remember, it can be successfully treated. You deserve credit for reporting on your symptoms early! I hope this helps. Rosemary

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@swordfish

I’M HANGIN ON ROSEMARY GOODMORNIN, HOWEVER I’M NOT LOOKING FORWARD TO THE DR.s VISIT THIS TIME.IM WORRIED ALL NITE HE’S GOING TO SWAB IN THÈRE AGAIN, BEEN UP ALL NITE AGAIN.WELL C WHAT HAPPENS,THANKS

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THANKU AGAIN,I GUESS I’LL B HERE A WHILE BUT TTHE IV ANTIBIO KEEP COMING, C WHAT DR SAIS

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@swordfish

I’M HANGIN ON ROSEMARY GOODMORNIN, HOWEVER I’M NOT LOOKING FORWARD TO THE DR.s VISIT THIS TIME.IM WORRIED ALL NITE HE’S GOING TO SWAB IN THÈRE AGAIN, BEEN UP ALL NITE AGAIN.WELL C WHAT HAPPENS,THANKS

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swordfish, This is to let you know I’m thinking about you today.

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@swordfish

I’M HANGIN ON ROSEMARY GOODMORNIN, HOWEVER I’M NOT LOOKING FORWARD TO THE DR.s VISIT THIS TIME.IM WORRIED ALL NITE HE’S GOING TO SWAB IN THÈRE AGAIN, BEEN UP ALL NITE AGAIN.WELL C WHAT HAPPENS,THANKS

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Good morning, swordfish. I understand your anxiety. After all, we are only human. Just try to rest in the fact that you have the best medical team available and they will get this under control and you back on track. Sometimes there may be a few setbacks but hang in there and try to stay strong. Definitely talk to your team about your anxiety so you can get some assistance with that to help you get the much needed rest you require right now.
Keep us posted and know that we all are cheering for you!

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THANKS AGAIN ALL OF YOU, I’LL BE STAYING THE NITE AGAIN,I HAD A PARACENTESIS THIS A.M.5 LITRES TO GET SOME TESTS& TO ALLEVIATE SOME OF THE PRESSURE, THE RADIOLIGIST SAYS THERE’S PROBABLY 10 IN THERE!I FEEL RELIEF FROM THAT LIL BIT .SUPPOSEDLY I CAN GO HOME TMRRW.AFTRNOON.ILL BE IN TOUCH WHEN I’VE LEARNED MORE, I THINK THEY’RE SAYING IT’S MURSA!

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@swordfish

THANKS AGAIN ALL OF YOU, I’LL BE STAYING THE NITE AGAIN,I HAD A PARACENTESIS THIS A.M.5 LITRES TO GET SOME TESTS& TO ALLEVIATE SOME OF THE PRESSURE, THE RADIOLIGIST SAYS THERE’S PROBABLY 10 IN THERE!I FEEL RELIEF FROM THAT LIL BIT .SUPPOSEDLY I CAN GO HOME TMRRW.AFTRNOON.ILL BE IN TOUCH WHEN I’VE LEARNED MORE, I THINK THEY’RE SAYING IT’S MURSA!

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@swordfish, It is good to get an update from you! I know you were busy today, getting that procedure done. I’m happy that you are getting some relief from all that fluid pressure. Maybe you can rest easier tonight. Are you able to eat yet?
Hang in there. And as @coastalgirl says, we are all cheering for you! Rosemary

I am including this information on MRSA, if that turns out to be the culprit.
http://www.mayoclinic.org/diseases-conditions/mrsa/basics/definition/con-20024479

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@swordfish

THANKS AGAIN ALL OF YOU, I’LL BE STAYING THE NITE AGAIN,I HAD A PARACENTESIS THIS A.M.5 LITRES TO GET SOME TESTS& TO ALLEVIATE SOME OF THE PRESSURE, THE RADIOLIGIST SAYS THERE’S PROBABLY 10 IN THERE!I FEEL RELIEF FROM THAT LIL BIT .SUPPOSEDLY I CAN GO HOME TMRRW.AFTRNOON.ILL BE IN TOUCH WHEN I’VE LEARNED MORE, I THINK THEY’RE SAYING IT’S MURSA!

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THANKS, YEAH THEY’RE GIVING ME A FEW DIFFERENT TYPES IV ANTIBIOTICS
CONSTANTLY,SO THEY’RE ON IT& I DON’T MIND STAYING FOR THIS TREATMNT! IT’S A
LIFE SAVER FOR SURE,I’LL GO HOME TMRRW I GUESS,THANKS

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Hi all,
I thought you might be interested in this short video: Stella’s Story about after a transplant at Mayo and the Help in Healing Home https://www.youtube.com/watch?v=N5EYA3rqM7g.

Here’s additional information about the Help in Healing Home http://www.helpinhealinghome.org/contact-information/.

Did either of you use the Help in Healing Home?

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@colleenyoung

Hi all,
I thought you might be interested in this short video: Stella’s Story about after a transplant at Mayo and the Help in Healing Home https://www.youtube.com/watch?v=N5EYA3rqM7g.

Here’s additional information about the Help in Healing Home http://www.helpinhealinghome.org/contact-information/.

Did either of you use the Help in Healing Home?

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Thank you for this, Colleen. I did not use the Help in Healing Home but I have learned more post-transplant than i could have possibly learned before transplant and would definitely recommend it to others. I had my transplant at Mayo Jacksonville. Thank you so much for your devotion to this cause!!
Everyone at Mayo rocks!

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@swordfish

THANKS AGAIN ALL OF YOU, I’LL BE STAYING THE NITE AGAIN,I HAD A PARACENTESIS THIS A.M.5 LITRES TO GET SOME TESTS& TO ALLEVIATE SOME OF THE PRESSURE, THE RADIOLIGIST SAYS THERE’S PROBABLY 10 IN THERE!I FEEL RELIEF FROM THAT LIL BIT .SUPPOSEDLY I CAN GO HOME TMRRW.AFTRNOON.ILL BE IN TOUCH WHEN I’VE LEARNED MORE, I THINK THEY’RE SAYING IT’S MURSA!

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Blessings to help you rest and find peace in knowing that this is just a bump in the road and things will be better soon!!
The sun will come out tomorrow!!

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@colleenyoung

Hi all,
I thought you might be interested in this short video: Stella’s Story about after a transplant at Mayo and the Help in Healing Home https://www.youtube.com/watch?v=N5EYA3rqM7g.

Here’s additional information about the Help in Healing Home http://www.helpinhealinghome.org/contact-information/.

Did either of you use the Help in Healing Home?

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No, because I was in Rochester. My husband and I spent 11 weeks at Gift of Life House in Rochester. Definitely a home away from home with support and encouragement from the other residents. I clearly remember one particular incident when the transport shuttle bus was delivering us home from one of my pre transplant hospitalizations: A group of patients waiting outside the GOL to board the shuttle and they applauded and welcomed me as I was helped off the bus. Wow! Talk about encouragement and support. Rosemary
It is our first choice of lodging whenever we make the 800 mile return journey for annual check up.

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