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Liver transplant - Let's support each other
Transplants | Last Active: 1 day ago | Replies (1617)Comment receiving replies
@acid2come I hope the traffic wasn’t too horrendous today. We went to MGH last week for a 3:00 appointment. We left here at 12:45 and I barely made the appointment. My husband dropped me off on Cambridge Street and I walked the remaining short distance. He had to drive a bit further and park and got there a half hour later! The next day I had an appointment with my orthopedic surgeon in Chestnut Hill and faced the same thing and got there just in time. We can often make it to MGH in an hour so that was probably the worst ever. I do love MGH, they have been great there. I feel so fortunate to have such an incredible facility so close by. I’m sure lahey is good too. If not for that doctor I might have had my transplant there.
I’ve never heard of Valcyte but I’m still on a small dose of prednisone and it’s been more than three years. I think I will be starting a BP medicine soon. I needed a cholesterol one too and the doctor thought that was more important and didn’t want me starting two new meds at the same time.
JK
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Traffic was a breeze until the I-93 junction, but only held us back by about 10 minutes. So I was about a half hour early, which is good. I always have my Lahey survival kit--my backpack stocked with notebook and my list of questions, tablet, charger and lunch. All was well with the kidney doctor. He took my blood pressure manually, rather than one of the automatic machines like I use at home and said my blood pressure was normal. So my home BP machine is most likely inaccurate. Yeah--so no additional BP medicine. My kidneys numbers were good--potassium slightly high, so I had a brief consult with the nutritionist. My surgeon told my my liver is doing great and I don't need to come back for two months. She even told me I looked younger. I love her sense of humor. At four months I think I am finally becoming myself again, feeling a great sense of energy and optimism. There is still work ahead to build physical strength, but that is the easy part compared to the stress of the first weeks and months of recovery. I can't wait for the six month mark when I ill get rid of one or two drugs.
I heard another patient who left Lahey for MGH say they didn't feel like a good fit with a certain doctor. I will say I saw her (if it's who I think) for several years before transplant and attribute my survival to her. She encouraged me to lose weight and always spent the time to answer all of my questions. I think the diet and exercise she encouraged helped me through the surgery and recovery. My cancer was detected and treated in the very early stages, thanks to her care. But I did have doctors over the years of surviving liver disease that were not a good fit, and had to leave behind. Trust in our relationships with our care providers is so important to our outlook. I always hear great feedback about MGH. I have several friends who are transplant patients there.
Valcyte is an anti-viral medication. I need it because my donor liver is CMV (Cytomegalovirus) positive and I am CMV negative. So I face the possibility of infection with this virus at some point. Best wishes, Bill