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Are there any other pre-liver transplant caregivers out there?
Hi,
I'm JoDee and my husband is on the registry waiting for a liver transplant. I'm feeling stressed and would love to have someone to talk to that gets what is going on with us. We live 5 hours from Rochester, so I can't attend any of the support groups there and there aren't any near us. Any suggestions?
Thank you!
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Thank you for the welcome and the information. We actually had an appointment with our GI/Liver specialist today and talked withm hi about a referral to the Jax Mayo Center. He indicated he is going to move forward with sending a referral to the center. It was my understanding that someone from the center would be contacting us after receiving the referral from him. Is that correct?
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1 Reaction@bamagirlgina, My transplant team at my home area, made my referral to Mayo Rochester, because they had reached a deadend in my treatment. My husband thinks that our local transplant doctor told us that he had sent the information that they requested for the referral. We do know that we received a packet from Mayo with appointment schedule, details, registration etc.
I am happy that your husband is going to be receiving treatment.
Rosemary
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1 Reaction@rosemarya Rosemary, you had a local transplant center? I just always assumed that you did not which was why you were transferred to Mayo. There are NO transplant centers for liver in NH. I believe that Dartmouth Hitchcock does do kidney transplants, but that's all.
My doctor referred me to a different transplant center but we did not care for it there so I researched it myself and chose Mass General. I felt a little bit bad because I think he had put some effort into finding a place for me and he had obviously spoken to the doctor there a few times but neither my husband or I liked her at all.
JK
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1 ReactionMy husband's GI doctor assumed that we would be going to the hospital that he was associated with, but we wanted to go to Mayo. His nurse totally understood as she has a son that is seen for different reasons there. She told me to call and make an appointment! I had no clue that you could call Mayo and schedule! Lol So, I went online to the appointment scheduler and requested an appointment and we had one 18 days later. We have been there 6 times for appointments since starting last June. It's a 5 hour drive one way and at times we wonder if we just should have gone to the local doctor that was only 25 minutes away, but deep down we know we made the right choice.
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4 ReactionsHi @bamagirlgina So glad to hear things are moving along with getting your husband to Mayo. I know you and @transplantcenteratmayoclinicflorida exchanged messages after you posted this question, but to confirm, yes – you should be hearing from Mayo Clinic’s campus in Jacksonville once they receive all of the referral information. If you don’t hear from them in the next few days, feel free to call our appointment office: 904-956-3309. Thanks!
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1 Reaction@contentandwell, Yes, I did. I was on the transplant list at the Univ of Kentucky which is only 40 mile/minutes from my home.
We were very pleased with the care that we received there. I really liked the doctors and all of the medical team while I was a patient there. We were also thrilled because we could live at home, and have relatives and friends nearby. But...one day my labs indicated the possible presence of tumor cells. (that was right after I was told to get ready because I would probably be called soon) Then next day, another blood draw to double check result, and next day I had endoscopy to get tissue samples, but they were not able to get any samples due to the blockages in my bile ducts. I was inactivated from the transplant list. The head of the department made arrangements for us to go to Mayo to see the specialist in cholangiocarcinoma.
Two days before our flight to Rochester after a difficult week, I went to the ER. I was experiencing acute renal failure and ended up in ICU at UofK instead of flying to Rochester. I missed my appointment. After emergency dialysis, I began to stabilize. That is when the same same dept head/surgeon talked to Mayo and made arrangements to fly me to Rochester via air ambulance after 5 days.
I spent 2 weeks in the Mayo Methodist Hospital, continued the (hopefully temporary) dialysis. I did not have the cancer, was re-evaluated and approved for a liver transplant. I continued on dialysis, but there was no improvement in their function. I had some more evaluations and was also listed for a kidney transplant, too. I remained on dialysis until transplant. I could look forward to one surgery instead of two, with both organs coming from the same deceased donor. Yes that was frightening, because there needed to be 2 good organs instead of one. The doctors were always honest and encouraging to me.
It was an extremely difficult time, mentally, physically, and spiritually. That is why I wrote the blog article about Staying Positive While Waiting when I was approached about it. There was absolutely no other choice for me. I wanted to live. I wanted to go home again.
https://connect.mayoclinic.org/newsfeed-post/staying-positive-while-waiting-for-a-transplant/.My own experience tells me that miracles do happen. That is why I like to say, "I believe in miracles"!
Rosemary
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2 Reactions@rosemarya I just always assumed that you were sent to Mayo because there was not a transplant center near you, just like there are none in NH. You sure had some very scary times there, thank God it all turned out so well. I am sure that you, like me, express your gratitude every day, multiple times a day. My journey was as difficult as yours but shortly before my call things did go downhill so it was getting a bit difficult. The NP at the hepatologist did not think I would be called until at least November and I just could not imagine how I could make it that long. Thankfully I didn't have to since I got the call on September 22.
I too believe in miracles.
JK
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1 Reaction@contentandwell - Jane, Sometimes it gets too emotional for me to remember and to relive that part of my life. That is why you will often see me using the term, 'complications'. Nine years ago, during the first 2 weeks of March, I was going through this. We had the option to return home and be reactivated on the transplant list, but I told my husband that I wanted to stay at Mayo. When I was listed for a kidney, too, I was sure that I made the right decision.
After I transplanted and returned home, I went to see my original transplant team. They were thrilled to see me, and to know that I was going to be okay. They said that I could come back as a patient anytime. Right now we are committed to making our annual trip to Rochester (about 13 hour drive that we prefer to flying) however, eventually as we get older we will be considering that.
I am happy that you are doing well. And - Yes, everyday is a gift.
Rosemary
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1 Reaction@rosemarya I can totally understand the emotional part. I think that's why I remember so little from the time I got the call to the next day. I was perfectly lucid, not in the least having any type of HE at that point, but it's all a complete blur to me.
I am thankful that I was able to have my transplant in Boston, it makes the trips much easier. If I had ended up at Mayo we definitely would have been flying a lot.
My son was in Minnesota last week. One of his clients wanted to take him ice fishing so he went out there and they ice-fished on a big lake in quite an elaborate "hut" - he sent me a picture. I can't quite understand the appeal of ice fishing. Fishing sounds boring enough but to be out there on a freezing cold lake makes it worse. I think my son was glad for the experience but that he has no plans on doing it again.
JK
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1 ReactionSorry for the delayed response, but just now seeing your message. BHM is Birmingham, specifically UAB medical Center. It is listed by our insurance as a Blue Cross Center of Excellence, along with Oschner and May Jax. At our last visit, we told the GI we wanted to move forward with the evaluation for transplant. He would not recommend a specific center but we chose to go with Mayo in Jax. Our local hospital here (Baptist/Pensacola) is also affiliated with Mayo--not sure if that is any benefit or not for maybe getting some testing done locally. Reviewing our BcBs Federal insurance it looks pretty good as far as coverage. It also provided reimbursement for travel/lodging up to a certain number that I don't really recall at the moment. We also have a 39ft travel trailer so the option of moving it closer to Jax and setting it up at a long-term park could also be an option. As far as alcoholic Vs social drinker, I would say by husband was a very social drinker. He was a beer-only drinker and during the week drank a few most days but not always. Weekends were a bit heavier. Other than the liver disease, he is in great health so far. Unfortunately, when one of his first symptons appeared as swelling in his ankles/feet and eventually legs, his PCP dx was lympadenopathy and he was put on pumps every day and send for vascular studies which showed nothing but he was told to continue the pumps. When I noticed a change in his gait, occasional slurred speak, a bit of confusion/forgetfulness, when it was brought to his PCP's attention, he didn't seem concerned, but that's another story. 🙂 At least we are on the right path now.
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