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Transplant team follow up process

I had a liver transplant in July of this year and I am trying to understand the follow up process. My son donated a part of his liver so I was not quite as debilitated  as many prior to surgery . My procedure  was performed  at the University  o Maryland  Hospital. I was under the impression that the transplant surgeons who performed my procedure would continue to be my team and follow me post operatively until I was transferred back to my heptologist and then yearly visits with surgeons .

It seems that the surgeons are only following my progreas  for 3 months and then they want me to follow up with hospital heptologist. When I questioned why not just following with my heptologist I was told that the hospital providers had access to the pathologists etc. I am not really buying this explanation Perhaps because I have not experienced any overt signs of rejection I am not appreciating their caution.

I have been very fortunate that my problems post op have been able to be managed with changes to my medications. My white count was just about wiped out by the anti virals and myfortic. Once discontinued they are improving . I also have developed Post liver transplant diabetes now taking 5 injections daily and finger sticks 6 times a day. I feel I have gotten off easy after reading some of the problems others have experienced .

I would appreciate any feedback from other liver transplant members about how there follow up providers were determined. Thank you

 

 

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Replies

  • My Hep team has a "work flow" if you will.  On now my 3rd Hep (3 years post next month) in the same group based on where I am at.  Pre, during and post.  Surgeons are there to install, they will not be following you in most cases. 

    Went through the injections (once with ugly side effect) but was required for the WBC.  I was also made diabetic with Pred and other meds.  As I mention quite often, use your food.  Three months of no longer eating "Added Sugar" and a low sugar diet I was no longer diabetic and got rid of the finger pricks and stomach shots.  Need to alter your whole diet anyway if you want to recover the best so start there IMO.

  • i am  7 months post liver/kidney transplant.  i still see my transplant teams both of them at the hospital used to be twice a week then once a week then once every 3 weeks and it still is. i have problems with low white blood cell also i am taking injections to produce more white blood cells, also they are still altering my meds.  they said that after 1 year i will be able to see my hepatologist every 6 months.  he works for the same hospital that i was transplanted at but its a different place that is much closer to me also i used to see him before my transplant he is the one who reccommended me for transplant so i am glad about that

     

  • After your surgery, you will have month-long follow up with your hospital transplant team. After follow up, the hospital transplant team will assign you to the liver doctor ( or called GI doctor) and his team for your  post transplant journey. 

    Surgeons are specialized in surgeries such as kidneys, livers, and lungs transplants. In our local hospital, there are about 1000 transplants every year. 

    After transplants, the patients are assigned to specialized doctors such as kidney doctors (or called nephrologists), lung doctors( pulmonologists) and liver doctors (GI doctors) for long term care. 

    Wish you the best. 

  • I was followed by my surgical team for less than a month.  I was then assigned to a hepatologist at the transplant hospital.  I may have been able to transition to my local GI doctor who has a strong background in hepatology; however, I chose to stay at my transplant hospital. 

    They have an entire healthcare team that is familiar with transplant patients and all of the hiccups that can happen.  I had a minor hiccup and saw how the team came together to solve the problem.  That sold me and I have not regretted it.

     

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