This and That and Talk - My Transplant

@hopeful33250, Teresa, you are very kind to say this.
I believe that after this experience and a new life, we cannot 'afford' to let anything get past us. My husband and I consider it our own special way that we honor my donor - by taking care of this gift that was freely given in my time of need.
Living with a transplant requires lifetime commitment to being aware and proactive. On this forum, it is wonderful to receive ongoing encouragement from others who are in similar circumstances.
Thanks for your encouragement,
Rosemary

@contentandwell and @rosemarya I agree - you are not normal, but far above normal - in that place called "special." You are both intelligent and planners - you don't let anything get past you! I admire both what you have been through and how you handle it. Teresa

@contentandwell, We are a special set of patients, and many doctors have not had to treat people with our medical issues. But I am in complete understanding and support of your approaching this issue. I think that you mentioned your visits to the gym and pool and spa, and those play a major part in your choice to get it treated. Early diagnosis and treatment is always the best policy - even more important after transplant. My husband likes to tells me that I'm 'not normal' anymore - so I should not settle for normal care. btw, husbands professional career was as a psychologist.
Correction: My nail darkening began pretransplant, But the outgrowing wasn't until afterwards.

I'm loving what you said, "I want answers"!
Rosemary

@contentandwell, I believe you did exactly what any good patient would have done by asking about the medications. I also do this whenever in question. If my issue is directly related to the transplanted organs I go thru the portal to my nurse. She either responds, or she consults with a physician before responding. I have also felt the need on occasion to go beyond my local pharmacy to my specialty pharmacy at Mayo for advice. I feel that they have more experience with these immunosuppressant drugs and our condition. I have not found my locals to be out of compliance, but the peace of mind is worth it to me! Plus I am provided with a more detailed answer to my question. It is so-o-o hard to decide, but I prefer to err on the side of caution!
I had some minor athletes foot rash when I was in for my annual in April. Dermatologist said it is ok to use some of the over counter topical creams. He gave me some names, but I would need to go look them up. Recognizing that we are all under different caregivers, and have different situations, I believe that you are best to go to your provider.
JK, as far as the toenail thing - my husband and I have been surprised at the many peculiar things that we have ended up talking about during and since transplant. Often find ourselves laughing about it later.

I can understand your concern over the creatinine numbers. It is wonderful that the team at MGB will be in contact with you about it. I know that you will be happy to hear from them. Were your creatinine numbers stable before you changed your immunosuppressant meds? Were they 'normal'?
Rosemary

@rosemarya Thank you for the input. That seems to make it even more likely that it is not fungus but the podiatrists probably see very few patients with a problem from transplant since the large scheme of things we are not that common. Of course your problem started prior to transplant whereas mine just started more recently, about 8 months after transplant.
The nail was looking sort of ugly and I had no idea if it could be fungus or not so I just wanted to get it checked out particularly since in some instances a fungus can cause a spread of infections, the last thing I need. I guess I am fairly cautious; I want answers.
JK

@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

@contentandwell, I never even asked about the possible medication connection, I just assumed it. And the dermatologist was not concerned, except to suggest the biotin (which also really helped my thinning hair-after the transplant).
JK, It looks to me like we are all helping you to formulate your list of additional questions for your surgeon at your annual visit:-)
We are all in this together!
Rosemary

@contentandwell, Hopefully in 8 years you will forget this whole episode like I did:-) Rosemary

@contentandwell, @hopeful33250, @lcamino, This current toenail discussion has jarred my memory!
I remember that during my pretransplant days, I was severely jaundiced, and my fingernails took on that dark hue, too. I did not think much about it at the time. But as soon as I came out of my transplant surgery, one of the first things I remember hearing from one of my sons, was, "Mom, your aren't yellow anymore!" Well, my nails remained darker than the rest of me. As time went on, I noticed (quite happily) that I was forming new nails - and they were my 'normal' coloration. However, some nails came in smoothly with new one under the old damaged one - like roofing shingles. On others there was with a rough joint where they met. The new ones grew in but were weak. At my 5 month visit after transplant (postponed from 4 month due to sons' wedding) the transplant dermatologist that saw me said that it would be okay to take biotin to strengthen them.
I transplanted in April of that year, and in November, I went on a trip that included some hiking. Last week, I was again hiking, and as I was lacing up my hiking boots, I remembered that I had to wrap tape around my toenails to keep those rough joints from catching on my hiking socks! And even a couple of my fingernails needed layer s of clear strengthening polish to prevent them from coming off too early (ouch). I also remember that I needed to wrap tape around a couple of them...interesting what un pleasantries we choose to block from our memories!
I have always assumed that this was a result of my body reacting to the severity of my own complications, or the medication, or surgery meds, etc. I never even considered the possibility of a fungus. Fortunately for me, it apparently was not an issue. JK, I am impressed that you have taken the self determination to get this checked out and treated. In my ignorance, can I ask what led you and podiatrist to consider and test for fungus?
Thanks for keeping us informed on this!
Rosemary

@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa