Hostess Risé Blesses Us

Hostess Risé blesses us with her tireless devotion to helping with our transplant situations. It’s amazing how she can manage the website, promote organ donations, answer our queries, plus start new and interesting topics. She maintains a constant level of friendliness, joy and hope.

Our Hostess suggests that readers of her website share some of their stories; since they may help others better understand their own situation.

My case is somewhat uneventful, but here it is.

After the liver surgery 5-months ago, a brief internet investigation led to Previously, I had only spoken with 1 liver Tx person on the phone. His first organ failed and the second one he had for 4-years.  

Although I went to the pre-Tx clinic about every six months for 10-years, the MELD score never got high enough until some tumors started to develop. This significantly increased the level of brain fog, and the last few months were the most challenging.

One sunny day they called and said a donor had provided the Gift of Life. The surgery had no complications and I was released from the hospital a week later. Since then, there have been zero rejection episodes, and the brain fog is gone…but a lot of memory has been erased…actually a benefit, because “I can’t remember” is a sometimes-valuable free card.

Sometimes I wonder why everything has gone so smoothly. In addition to having a very caring spouse, was it being a vegetarian for 40-years…was it the strength of the donor’s liver, did the Lord grant me an undeserved favor, was it the medical team, was it living in the more-sterile frozen North (Canada)?

As we all know, post-Tx people often have a lot of spare time, and it’s interesting to read what the Transplantfriends have to say about the details of their journey.

They weaned me off Prednisone within four months, and also reduced the Tacrolimus by half. It feels like the meds have some effect, but it’s a much better feeling than before the surgery.

There was only one sidebar to this journey. In Canada, having the flu or a cold is common…and apparently more common when on immunosuppressants. I had a flu/cold for the first 3 months, so took the recommended Benadryl. Later I started experiencing the urgency symptoms indicative of an enlarged prostate, and they proscribed Flomax. This med worked, but presented with large headaches. Someone suggested taking the maximum dose of Advil (since Tylenol didn’t help). After 3-weeks, my GFR suddenly dropped to 25% below minimum, and the Creatinine rose by about 25%.

Pre-Tx, the GFR was at the high end of the scale, but the meds had brought it down to the minimum acceptable level for my age group. I quit the Advil immediately when learning the results of the blood test (and finding out on-line, that maximum doses of Advil can affect the liver). In rereading the Tx literature, I noticed that Advil was not permitted (my bad). Now, two weeks later, the Creatinine is back to the upper limits of normal, although the GFR is still CKD Stage 3.

There is internet information that suggests Flomax (and other similar products) can cause an enlarged prostate. It’s interesting that quitting it, has eliminated the urgency to urinate. I guess the body can fix itself. The other interesting post-Tx observation is that a recent ultrasound of the spleen, which was pre-Tx double the normal size, showed it now in the normal range. I guess again that the new liver’s processing ability has decreased the red cells lodged in the spleen. As possible corroboration, the platelet count, which was historically about 50, is now always over 100 (although the recommended minimum is 150). It’s noticeable how much faster any cuts and scrapes stop bleeding. At one time, even shaving could be an adventure. Please note these medical observations are only suppositions on my part.

And now a question…in the past few weeks, a hernia (about 4” in diameter and 1” high) has developed at the intersection of the two incisions. The clinic says they like to wait until a year has passed before restitching the tissue. But, they also say that a lot of pain can motivate them to accelerate the surgery. They recommended a support and it helps.

So…does anyone know if abdominal hernias reach a maximum size and then just stays as is?

Any comments and suggestions on hernias will be greatly appreciated.

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  • Lawrence- I know this post is old and I don't have any knowledge in this area anyway, but am inspired by your story of how God worked in your life when you needed it most. I am also considering the vegetarian diet.
  • Mark, we are similar. Dying is its own blessing. The Lord guides our lives. If He keeps us on this earth, then we fight on with the gifts we are provided.

  • Lawrence, the greatest challenge was making the choice to live. The dying part was surprisingly easy to accept. God and my caregivers dragged me to the finish line :)
  • Kidneyboy...thanks for the advice...I will ask the surgeon who did the transplant for all the specifics.

  • Hi Lawrence,

    Post renal Tx I had a surgical hernia that required multiple surgeries to close. The fascia alone was not able to mend well enough, given the level of meds I was taking early on. The hernia continued to open requiring further attention.  Eventually a mesh was used successfully to heal the area.   Waiting might have helped the original repair, however the hernia was increasing in size.  I would consult with your team, that served you so well, to explain to your satisfaction why waiting is the best course.  It may be they want to avoid any risk to your Tx with a surgery that is not an immediate need.  I hope you have continued success with your Tx and enjoy many years in good health.

    Stay Well!   

  • It's hard to imagine a meld that high. How did you manage the challenges?

  • Yes, the first 2 (quarterly) made them disappear altogether but they returned and thus tace 3-5. I don't think they were intended to cure, only to stymie their growth until a tx could be done. Each successful tace raised my meld about 5 points. I was at about 35 when the tx occurred.
  • Thanks for sharing, Mark. Are you saying that the tace treatment helped slow down the progression of the tumors? I agree with your comments on the blessing of receiving the Tx before the time it's too late, and feel badly for those whose circumstances don't get help in time. It sounds like your platelet level was very low...less than 40? 

  • Btw, I can certainly relate to your comment about shaving. Early on, I nicked the edge of my lower lip while shaving and the cut would not heal completely. Had to stop eating out because my lip would start bleeding nonstop. Woke up in bed once with sheets covered in blood - from that tiny shaving nick :(
  • Sure. I think there were 2, maybe 3 tumors toward the last phase of the tase treatments. Things were not that bad until an abdominal infection put me in the hospital for 10 days. After that, the lasix and other drugs were out of whack and the ammonia was literally going to my head. I was scheduled for tase #5 when a liver was offered to me. My surgeon rejected it (fatty liver) after I was already suited up for surgery, so I got the tase treatment instead. Left the hospital with a sick feeling that the tumor size had exceeded UNOS protocol and I would be delisted. Came home and got the 2nd call within 30 minutes. The rest is history ... good history. Hardly a day goes by that I don't spend a moment thinking of those who waited but could wait no more.
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