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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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@marynlogan I'm so sorry to hear about your husband. Prayers for strength for both of you!
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1 ReactionMy son worked until the day of his transplant. He has a desk job. He also has three young sons that played sports and needed a dad. He did very well with his liver surgery-the liver was split betwwen him and an 8 month old baby. On day 5 he left the hospital taking the elevator down 18 flights, walked across the street to the parking garage, and to the car. He needed no physical therapy. I think it was because he worked at keeping his life normal. Once a month he had an outpatient procedure to tie off varices and every two weeks had fluid drained from his stomach. His liver disease seems different than mine. Instead of varices I have recurring esophageal strictures. I am up to 9 in two years. This last procedure didn’t go as well as the others. My platelet counts are dropping faster-now about 60. The doctor said everything went well but there was blood on the sheets. Well he said there was some bleeding so he didn’t know if he could do another one. I asked him what that meant for eating—his answer soft food. For your husband on the reasoning etc tell the doctor. It could be a sign of HE starting. My first sign was during a card game where I was keeping score-in the middle of the game I forgot how to add. I was ashamed so I lied and said I had a headache. As a patient at times you want to protect your loved ones, other times because of frustration you treat a caregiver harder than you would a stranger. I have seen the before and after—the after is really worth the struggle.
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3 Reactions@jodeej, Yes, you will get thru it. One day at a time, one foot in front of another. It is not always easy, but the rewards are worth it:-)
Rosemary
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1 ReactionMy husband was just diagnosed and we are still trying to process everything. So glad I found this site. Im sorry if I am barging in on someone else's post but I have questions along the same lines and honestly don't know how to start my own question. We were referred to a GI who promptly told us my husband needed a transplant. He was very blunt. My husband had not drank for several weeks even before his diagnosis. We he told the doc that he was never drinking again the comment from his GI was "that's what they all say". Then after telling us he needed a transplant, he further stated that there were no transplant centers in our area. I know this guy has a tough job but we were left reeling with no idea where to get any of our questions answered. He did say that my husband would have to be alcohol free for six months and that he would need to have letters of recommendation and show that he had a good support system before he would be "listed" and that's kind of how it was left. We've be researching online and I found this site. So, first question is how to we begin this journey and do we have to wait six months before even beginning the process. We have each other as a support system, but both are from very small families. He was an only child, I have one daughter, one brother and that's about it. Will that hurt is chances of getting "listed"? The doc also said that the window is closing for him to have a transplant since he is 62 and doc said they don't like to do them after around 68 or so. I noticed the poster above said they have to live closer to the transplant center. How do you pick a center? We live in Pensacola FL, 7 hours from Mayo in Jacksonville. Closer centers are in BHM 5 hours away and Oschner in NOLA 4 hours away. How do you choose or does someone do that for us. We have BCBS Federal so our coverage is worldwide. Sorry for so many questions. I have tons more but don't want to totally highjack the originally poster's blog. We just literally don't know how to get started or when. Thanks so much for any information!
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3 ReactionsMy advice is to get an appointment with the facility that you would like to do your transplant. You will have a social worker assigned to your husband that can help him get ready for his transplant. Also, most transplant facilities require you to stay close by and each one is different with their requirement. I recommend traveling to Mayo, but maybe you could start with your insurance company? And there is no "window," there is scale based on need. Your husband could be on the waitlist for a long time or short time, it's hard to know for sure.
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3 ReactionsWe live in Ft. Walton. When my husband had living donor kidney transplant in 2012, we went to Mayo Jacksonville. It is a straight shot on I-10. Mayo is located on the SE side, so the only major traffic in the whole trip is Jacksonville itself. Even that can be avoided by taking the bypass. Mayo has Gabriel House for people waiting for transplant, recently transplanted. Very inexpensive, but very nice. http://www.gabrielhouseofcare.org
We’ve had to relocate to Jacksonville twice (for eight weeks each) for an unrelated medical treatment and we used ExecuStay.
I don’t know about the window in hours for liver transplant, but you may have to relocate to Jacksonville.
The doctor is the one who will make the transplant arrangements, and it sounds as if he won’t initiate it until proven stopping drinking has been demonstrated. As to the GI comments, your husband should start with AA or some other sobriety group immediately. He will have a sponsor who will be one of the people to vouch for him. His work, church and professional organizations might also be sources for people familiar with the situation to vouch for him. No center will give a liver to someone who may abuse it.
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2 Reactions@bamagirlgina, I want to say, "Good Morning, and Welcome to Mayo Connect". No apology needed, you are not barging in! We call it "Joining the conversation" and that is why we are here. I am a liver/kidney transplant recipient, and I can understand that panicked feeling you describe. I am happy that you are already in contact with some other members who have shared their experience. It does help to know that you are not alone. We are all here to help and to walk with you.
Here are some resources that explain eligibility, alcohol use, support, being listed, as well as contact information.
https://connect.mayoclinic.org/newsfeed-post/eligibility-for-liver-or-kidney-transplant/
Alchoholic Hepatitus - https://www.mayoclinic.org/diseases-conditions/alcoholic-hepatitis/symptoms-causes/syc-20351388
Maybe after you read these articles, you could conference with your GI or your PCP about a next step for your husband's situation. He will definitely need someone to monitor the alcohol consumption. It is to your advantage to be informed and beyond the panic, to move forward and to have a reasonable conversation.
Your questions are always welcome! There are also many transplant discussions happening in our Transplant Discussion Group
https://connect.mayoclinic.org/group/transplants/
I look forward to hearing from you.
Rosemary
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2 Reactions@bamagirlgina I'm sorry to hear what you and your husband are going through. Was he an alcoholic or just a social drinker? When my cirrhosis was diagnosed I was told to not drink but I had just been a social drinking, basically having a glass of wine with dinner, so I don't believe that impacted the time I would need to be alcohol free.
I was accepted as a transplant candidate when I was 67 and transplanted at 68, 2 days short of my 69th birthday. I presume the doctor who made the age comment is not actually at a transplant center. My transplant and pre-transplant care was at Mass General Hospital and they look at a person's overall health and fragility, not specifically chronological age. I am fortunate in that we live in southern NH, about 55 miles from Boston with some of the best medical care in the world. It takes about 2 hours to get there with mid-day traffic but it's worth it.
I was not familiar with what BHM might be so I googled -- Baptist of Miami? I'm not familiar with that hospital but of course both Mayo in Jacksonville and Oschner are very highly regarded. If BHM is Baptist, they are not listed as doing liver transplants.
If you go to SRTR.org and put in your zip code you can find the hospitals that do liver transplants within however many miles you input. There are five within 250 miles of Pensacola, with Oschner being the closest.
I wish you luck on this journey and please ask any questions you need to ask. That's what this forum is for, to help each other by responding to questions, as long as it is not medical advice.
JK
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2 ReactionsHi @bamagirlgina - just want to echo the warm welcomes you've received from our other members and let you know we're here to help answer any questions. @keggebraaten and I are moderators of this group - not patients but Mayo Clinic employees, so let us know if we can help connect you to our appointment office or share more information about potentially coming to our Jacksonville campus.
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2 ReactionsHi again, @bamagirlgina. I’m at our Jacksonville campus today and connected with a colleague in the transplant center who shared some additional information with me that might be helpful for your situation. He recommended getting connected with a transplant center soon so that your husband can begin the evaluation process. The issues you described are not uncommon and it’s much better to identify all issues that may be a barrier so they can be addressed early in the transplantation process. My colleague advised that our Jacksonville campus treats many patients from the panhandle and routinely transplants patients in their 60s, so your husband’s age shouldn't be a barrier. In fact, according to SRTR.org. 28% of the patients receiving a liver transplant at Mayo Clinic in Jacksonville are over age 65 (which is above the national average). I hope this helps! PS- the colleague I spoke to is also a member on here, @transplantcenteratmayoclinicflorida so feel free to contact him directly by sending a message if you have more questions.
-Kristen
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