New Transplant Blog Posts

@keggebraaten Thanks Kristin, but I am still at three months now. We are fiddling with my medications because I was changed from tacrolimus to sirolimus because the Tac was causing my creatinine to go high. I am having knee surgery on October 13 (yes, Friday the 13th) so now we are going back temporarily to the tacrolimus. Apparently sirolimus can interfere with healing. Since that is all being adjusted I will be continuing with my weekly lab tests for a while longer too.
Thankfully I can use a lab less than 10 minute away that is part of a chain (Quest) that connects directly with MGH, and I really do not mind going to Boston once every three months, I would move there in a heartbeat if I could afford to live somewhere nice down there. My visits with my surgeon are always pleasant. He is a peach.
Today after my visit, while I was checking out, I met a couple who come down from Bar Harbor, Maine, which is probably about six hours from Boston. Then later today I had connection with a person who goes to MGH from Northern Vermont. That too must be at least five or six hours away.
Surveys abound but when I have seen MGH listed as number 3 on lists of the best transplant centers. Mayo was first, Cleveland Clinic was second. I really do love MGH but would easily have headed to Minnesota if it looked like I would be waiting much longer in Boston.
JK

@contentandwell, I don't know how you all do it. There's so much to keep track of regarding medications and instructions from the doctors. You are all heroes in my mind to be able to lead full lives and still take care of all those extra details. We, too, have many patients who travel from long distances to see us for every visit. They don't seem to mind the travel too much, as long as the weather stays nice for them. We perform many surgeries on Friday the 13th - don't worry, everything will be fine! I know several transplant patients who switch their medications up frequently based on their levels and future plans. How does it go for you? Do you feel ok when they make those switches?

@keggebraaten Kristin, so far when they have altered my medications they have pretty much tapered one off as they add the other on. Changing has not been a problem for me. I have some problems from them that could not be considered major -- "hot flashes", diarrhea for which I have been taking imodium but they want me to switch to metamucil since it appears this will be a long term problem. The problems have not been from changing though, and are pretty minor when I think about what I was like prior to transplant.
I think it's sort of funny that my TKR is on Friday the 13th, my sister was horrified but I am not superstitious. I think the surgeon will be just as excellent on that day as I have heard he is on any day. That surgery will be at Brigham and Women's Hospital in Boston, which is a "partner" hospital with MGH. That was actually coincidental on my part, I chose the doctor based on reputation and everything I have heard about him, but it does simplify the coordination for MGH.
I am trying to figure out how to alter when I will take my medications due to the time change, we are going to Hawaii so it will be a major time change - I am on the east coast. My surgeon told me not to worry too much about it though.
JK

@contentandwell - HAPPY TRANSPLANT ANNIVERSARY! After getting to know you online I assumed you had your transplant years ago because you are so well informed, physically active, and sound healthy. Congratulations and do something special to celebrate!

Lynn

@lcamino Thanks Lynn. I had my appointment with my surgeon on Wednesday and he asked how I was feeling. I think he loved it when I told him how great I feel and how when I look back I can't believe how miserable I was a year ago. Honestly, can you imagine how gratifying it must be to be a surgeon changing people's lives like that? He's such a nice guy too, not at all arrogant like some doctors tend to be.
JK

@contentandwell- I have your surgery date in my calendar and will be praying for you and the surgeon that day.

Lynn

@contentandwell - and your orthopedic surgeon will change your life in a different way. It is only going to get better!

Lynn

@lcamino Thanks Lynn. I'm not worried which is odd because my other knee has never functioned well since having it done but I am in better shape this time and have a better surgeon.
JK

@contentandwell - I totally forgot you have already had one total knee replacement. You go bionic woman!

Lynn

@lcamino, my husband thinks I am crazy to have a TKR but he just does not understand how much it often does hurt. Thanks to all of my exercising I have strengthened the muscles around my knee helping me to walk now without limping. Since I am not limping he figures I am fine.
Yep, the bionic woman, that's me. Two fake knees and a liver that started out belonging to someone else. I thank God that he/she thought to go onto the donor list and that I got his/her liver. The liver, Hank as I refer to it since that is sort of gender neutral, and I have so far gotten along fabulously. With my transplantiversary looming in 12 days I cannot believe where I was a year ago, so swollen with ascites and edema that I thought I would burst. My skin was so stretched it actually hurt.
JK