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What is the condition of your Transplanted Organ? - Do you know?
Can this be the main cause of all the side effects we are all experiencing?
Take a moment and look-up the side effects of CMV and EBV
https://www.acibademhealthpoint.com/epstein-barr-virus-ebv-and-cytomegalovirus-cmv/
My “Liver Transplant” was due to PSC – (Autoimmune disease)
***Liver Transplant Date: – 8-27-23***
***MELD Score on 7-21-23: (14)***
Condition of The Donated Liver I Received:
DCD (Donation after Circulatory Death)
COSSI: Positive (Indicates positive signs of Liver issue of some kind)
MTB: Negative (Mycobacterium Tuberculosis)
CIT: 19hr 4m (pump 15hr 20m)
WIT: 30m
CMV: Donor +/ Recipient - *Mismatch - (Cytomegalovirus)
EBV: Donor +/ Recipient + (Epstein–Barr Virus)
*CMV & EBV*
- Both are herpesviruses that can cause significant health issues when they occur together
o Read more - https://www.acibademhealthpoint.com/epstein-barr-virus-ebv-and-cytomegalovirus-cmv/
- Both are common viruses infecting humans of all ages
- CMV and EBV prevalence range from 60% to 100% of the global population
- These viruses remain latent in the host and reactivate when the immune system is compromised
- CMV and EBV infections are also a common cause of complications in patients
- CMV and EBV are highly opportunistic and a common cause of infectious disease in immunocompromised patients
- (Check your labs) CMV can keep persistence in leukocytes and EBV in B lymphocytes
- Read more about this - https://pmc.ncbi.nlm.nih.gov/articles/PMC7605947/#sec5
My Post-Transplant Ongoing Issues:
***Severe Daily Joint Pain – All Joints***
- Before the transplant, there was no issue
- Seemed to start overnight at 4 months post-transplant
o That was the timeframe of stopping many of the medications per their schedule
- Joints in my hands are really bad in the morning
***General Unwell Feeling***
- Do my best to push through it anyway
- Exercise seems to help
***Low Platelets since Transplant***
- Constant bruising
- Excessive bleeding
- A lot of Nose Bleeds
***CMS Virus several times***
- 1st occurrence was 1-15-2024
- Happened right after stopping several medications at 4 months post xplant
- Viral load was 2850 & 2650 over 3 to 4 weeks
- They put me on Valcyte to fight it
- It has come back 6 times since then
***Constant Bloating and Digestive issues***
- Heartburn a lot
***I’m pretty sure I’m having vision issues***
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Good morning from Canada
I had my liver transplant in October 2020. I am currently experiencing a few of the symptoms that you have described. The only difference is that mine have started at the 4 1/2 years mark. I have been experiencing extreme bloating and fluid retention. No one seems concerned though. It's so bad that I can't do up my jeans anymore, last week I could! Joint pain in hands, elbows and ankles. As I like to say " It's hard being transplanted".
Liver transplant a little over a year ago. No symptoms but 3 months a go tested as CMV: Donor +/ Recipient - *Mismatch - (Cytomegalovirus). They put me on Valctye and back down to not detected. Took me off and now a small load. Never had symptoms but the tests go back and forth small loads when not on Valcyte. Best of luck with your fighting it.
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1 ReactionI too am on Valcyte for cmv plus on Vemlidy because donated organ exposed to Hep B.
9 months post transplant my Valcyte is at a low dose to keep cmv in check. I will have to be on Vemlidy or other Hep B antiviral for the rest of my life with this liver.
My main issue are bile duct strictures and anemia.
Good luck - pumped organs are amazing but have other issues as we see; however, the bottom line is I received a new liver and am alive. Everything else comes next.
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1 Reactionhang in their I had several stents put in bile duct different sizes for a few months but been without them now as that was the goal to place plastic and metal diferent sizes a few times till they could finally take it out !!!
good shape now for several years transplanted in April 29 - 2019 had sorisses & hep C in the old liver which made the new liver get hep C but drugs took care of that in a few months no problem Prayers to you !!!
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