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This and That and Talk - My Transplant
Transplants | Last Active: Aug 14, 2024 | Replies (1677)Comment receiving replies
@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK
Replies to "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..."
@contentandwell Hi, I'm glad to hear that your creatinine is "inching-down." Any improvement is a good thing! Teresa
@rosemarya Rosemary what are the physical symptoms you were told to watch for? No one told me that if I recall correctly. My husband and I came to realize that for me the symptoms were a very upset stomach and extreme fatigue but I don't know if that was typical or just me.
JK
@rosemarya @lcamino and @contentandwell, I agree. You all give of yourself to support and encourage other people and that is the greatest volunteering task! Teresa
@lcamino One day on the way to Boston to see my transplant surgeon, and feeling great, I was thinking about how gratifying it must be for surgeons like him to see patients before transplant looking wholly miserable and then a few weeks later to see them on top of the world. Or at least that was me. I blurted it out to him and he got a little smile and said it really is gratifying. I can only imagine the positive feedback they must feel from doing this. I think some surgeons begin to think they are God but thankfully my surgeon does not seem to be like that.
JK
@contentandwell -
Yes, rising creatinine is typical with my kidney disease and continued decrease in kidney function but I actually do not know what the creatinine is when you start dialysis. My doctor follows my creatinine but it is my estimated GFR that seems to dictate everything. I'm embarrassed to say that I really do not know why because the GFR is just that, estimated. I'm going to ask next month!
I'm to meet with the transplant team when my GFR is 20 with the plan of getting a transplant before it reaches 15 and that would typically take me one year. The "advantage" of PKD is that it is a slow digression that is somewhat predictable. If I don't have a transplant I would start dialysis anywhere from a GFR of 15 or 10 depending on my symptoms (nausea, vomiting, leg numbness, problems with taste, retaining fluid, uncontrollable blood pressure, shortness of breath etc.). Thankfully I have none of the symptoms of kidney failure except fatigue and bad numbers (high creatinine and low GFR) and from what I understand that is somewhat unusual, thus a blessing. I thanked God today as I finished a 16 mile bike ride on my tuned up bike. It was a hilly ride so lots of intervals and I rode 1-2 mph faster than usual!
@contentandwell - Thank you for sharing and reliving a truly frightening time. I understand better know what you were discussing before. I had no idea. Sounds like God was looking after you.
@contentandwell - I can't relate to your situation with your daughter but the consolation is that she is happy and it sounds like they are good for each other. Being the mother of the bride, and traditional party that would plan the wedding, you might feel like a fish out of water at the second ceremony so I'd recommend trying to focus on her happiness and that she is marrying someone that cares for her and treats her well.
@lcamino Good for you on the bike ride, Lynn. You and are similar in that I felt better than most with my cirrhosis.
JK
@lcamino You are absolutely right Lynn. Thanks. I just hope he does not become domineering after marriage.
JK
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@rosemarya My transplant team knew I wanted to get a TKR but when they found out it would be at Brigham and Women's which is a "Partner" hospital they were greatly relieved because the two hospitals do have a lot of cooperation with each other.
Of course MGH is a large transplant center but I am curious about what is the smallest in the country, and wonder how well they handle all of this. You are right Rosemary that it is very finely tuned. Gotta love those people. I sure wish the doctors up here cared about their patients half as much. My husband laughs about me and says he would hate to have me for a patient and I admit, I am picky and I think everyone should be. It's your health and your life. My husband has not had a physical since 2003. At that one his PCP suggested he see a urologist because he suspected prostrate cancer. He was right, he did have cancer so we trotted off to Boston for that, our first real experience with MGH. Interestingly, the urologist up here said to us, "of course you are going to Boston for a second opinion".
JK