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Tue, Mar 17 1:57am · Liver transplant support group in Transplants

I expected the same after my June 2019 Liver and Kidney transplant. After 6 months my feeling started to return and now after 9 months, it's over 80% back .I'm a 69 year old male – so your healing process may be much faster. My Liver has never had any problems – my kidney has minor problems. I lost 2 years fighting through this and it was worth the journey.

Sun, Mar 15 3:22pm · Liver transplant support group in Transplants

After the misdiagnosis, I contacted the MAYO myself – as I lost trust locally. They are just the most caring and, knowledge people I've ever met. With all my records sent there – I was diagnosed in One Day. It did take 9 months to complete all the testing. I've been in a HE coma twice (initially the TV was talking to me, then I entered a FOG that I could not see trough, with things talking to me. Now my Ammonia Levels are Great. Before I was taking Xifaxan and Lactulose, Las Vegas Doctors were pushing me to go on dialysis (I kept procrastinating) and eventually after speaking with an amazing Dr. at the Mayo, he said to skip it – for the worst that would happen is that they would tap my neck. Get on the waiting list quickly and also look at the time to transplant at each center. There are some huge swings. Best Wishes. My Meld score at some point was in the upper 20's, and when they called, I was 5 minutes away.

Sun, Mar 15 1:07am · Liver transplant support group in Transplants

My Meld score was in the high 20,s , however I needed a Liver and Kidney transplant. I was transferred with extreme HE (Like in a Coma) from Las Vegas and after being revived at the MAYO and an additional heart test, I received my transplant within 24 hrs. This was after a 2 year journey of misdiagnosis in Las Vegas. Never give up and stay positive – they journey will be worth it.

Sun, Mar 1 11:24am · Liver transplant support group in Transplants

My HE went to the Coma stage twice. Once after I was misdiagnosed as a stoke case in Las Vegas, before they found my HE, and the second time a year later, near when I was completing the testing for a transplant. They moved me from Las Vegas to Phoenix without me knowing until a day later when the Mayo stabilized me. It still took days for me to answer simple questions. Everyone should stay with it. I'm now doing fine after receiving my transplant. It will be worth the effort. Rest and keep your spirits up, for there are highly trained professionals at these major centers that deal with all situations daily.

Wed, Feb 26 8:03pm · Liver transplant support group in Transplants

Becky, I also had HE, misdiagnosed for one year, before I reached out to the MAYO in Phoenix. My Ammonia Level was in the high 200's.I also took 2 Xifaxan tablets daily plus lactulose. It worked for almost one year, as I was working with the MAYO to get on the transplant list. At the end of the process it became serious, as I needed a 300 mile emergency transfer and as I was in the Mayo system, they insisted that I would be transferred to them. I was very fortunate in that after 9 months of testing, I was placed on the list and received my transplants (liver and kidney) in less than 24 hours. I did have to stay very near for 2 months. Take HE very seriously (as I got into a position where I was in a coma like state) and start the process for a transplant approval. Look at hospitals that have the best success rates, better waiting periods, etc.. The first few months were rough (mainly because of my kidney), however now after 8 months, I feel better than I have in years. I know it's scary, however speak with your transplant coordinators,Doctors, Social Workers. etc., You will need a Team and they all will be there to explain in detail, support you and do whatever helps you. Follow their instructions – Exactly – and know there are many others that have been down the same road.

Sat, Feb 22 11:25pm · Liver transplant support group in Transplants

Karen, I live in Las Vegas and had my Liver and Kidney transplant last June. This was after a misdiagnosis in 2 Las Vegas Hospitals before they found out I had NASH (non alcoholic liver disease) and entered an altered state. After that, I sent all my medical records to the Mayo in Phoenix and set up an appointment There I was diagnosed on my initial visit, that I needed transplants and the evaluation process began, it took 9 months to complete the evaluation with me being emergency transferred from Las Vegas to Phoenix as I was totally unaware of when nor how I got there. They stabilized me (3 days) completed the last test and then placed me on the transplant list. I received my transplant the next day and after a rough 3 Months ( I also had carotid artery surgery causing a minor stroke) , I feel better than I have in years. My best advice – follow the advice of your pre transplant coordinator EXACTLY. Listen to your Doctor and Nurse team. Never be afraid to ask your questions – write them down prior to your visit. Have all forms completed when you get there. Speak with your Social Worker about financial problems ( you will be expected to remain in the area for a couple of months. You will be overwhelmed with "paper" – save it all and read it prior to the transplant. There are numerous websites that provide extensive detail about success rates, transplant hospital ratings, etc. I went through numerous emotions with grief for the family that lost a loved one, to gratitude that the donated organs were life giving, to my wife (my Caregiver) who was heroic in helping me get through. I hope you have a quick an peaceful journey through the process and always reach out at the Mayo as you will never be alone. Ben

Nov 18, 2019 · Foot neuropathy in Neuropathy

Get as many gabapentins as you need. I take 4 300mg capsules a day, If you need more,speak with your Dr. I have friends that take 10.
Also if you live in a legalized Marijuana State, try some of the active strain creams (a good store will guide you). I had a double transplant, so currently I only take prescribed medications, however with the cream I seldom needed medications. Here in Las Vegas there are Chiropractors that sell you relief, however it's little more than a Tens treatment (be careful it's a temporary treatment).
When the Needles Pain Starts,it totally uncontrollable and sometimes it's also the Burning skin areas – this is very painful and do not tolerate Anyone belittling your pain – and it's also Bad Karma.

Nov 18, 2019 · What are the financial challenges after transplant with medicare? in Transplants

Prednisone is a drug that again is increasing my blood sugar (120 to 150), while when I was not taking it it averaged 20 points lower. I hope to be free of this medication as soon as possible.

I'm at the point that I must be active again, and I still have many food, outdoor and mobility restrictions. Six weeks after my transplant I had a carotid artery surgery and had a minor right side stroke. So I still have physical and occupational therapy and I'm about 80% back. The Last 4 months have been "interesting", however I'm grateful for the Mayo's excellent doctors – even though I think they are in a hurry to push you out the door, since they desperately need bed space as they are doing an incredible number of transplants.