This and That and Talk - My Transplant

@amynewheart, Thank you. I have always wondered about how having prior medical experience would affect someone going thru transplant. I am sure it is quite different for each person, though.
When I first learned that I would need a transplant, I think that I was too frightened and overwhelmed to even know what to ask. I have a vey dear friend who is a nurse, and she along with the health ministry group at my church kept a close eye on me. She told me that when I was ready, she would go over my liver transplant book with me and answer m questions. That was wonderful because she had worked on a transplant floor for a while and was so helpful and she calmed a lot of my fears. And she provided me with some practical advice. Later, I needed to be transferred away from home transplant facility to Mayo, and there the team was very thorough in taking the time to answer any concerns that I had.
Hugs,
Rosemary

@lcamino I went to the podiatrist today. He was very nice, I liked him. The toe in question is lifting from the base so he was able to easily snip a couple of pieces off the nail which will be sent to a lab to see if it is fungus. He said probably but it does not have the typical traits. He thinks it's possible that I may have damaged it somehow. I wonder too about it being connected to the hair loss that many post transplant people have - if your hair can be effected by the pharmaceuticals then couldn't your nails also be effected? They recommend biotin for that. Your nails and hair have similarities and my hair is thinning slightly so I have started taking biotin. The other toe where the nail totally lifted he said was definitely not from a fungus, it's perfectly healthy.
I asked him about treatments and if he could just remove the nail and he said that doesn't totally solve the problem because the fungus is not in the nail, it's in skin under it.
I go in 12 days and then will find out what it is and if it is a fungal infection how we will go forward.
It was a long day, I left the house at around 8:15 to get to the water class, had errands to do along with the appointment, and didn't get home until after 5:00. I was totally bushed by then.
I have been trying to figure out what possibly could have caused it and he did say it could be shoes that were tried on by a person with a fungus. I also asked him about the alcohol soaking and he didn't think that would be much help since the fungus is deep under the nail and the alcohol wouldn't get to it but I am going to give it a try anyway. It can't hurt. How long do you soak for?
JK

@lcamino Lynn, how heartbreaking it must have been to lose your daughter. I am so happy for you that your other children are not having any of the same problems, and they are almost grown-up now, right?
JK

@contentandwell, This did not occur to me before, but just now reading this post, it came to me. My finger nails actually regrew after transplant. The old nail was kind of discolored/darker, and there was a rough joining line where the new one grew in. It seem like it was within my 1st year. I recall fingernails doing it, but not toe nails. Rosemary

@rosemarya Thanks Rosemary, I really think it is possible that it could be something to do with transplant medications since they can effect your hair, plus the podiatrist did not think it looked typical of fungus. As I mentioned the nail on the little toe lifted but it never looked odd or anything. He said that one was definitely not fungal.
I am anxious for my appointment to find out what he has to say. That nail really has gotten ugly looking though since it lifted from the bottom and got dark in that area from whatever creeping in. After he clipped a bit off he put a bandaid on which I will do now when going out so it will be covered.
JK

@contentandwell Hi JK, I was just thinking about your appointment and wondering how the fungus is doing. What kind of doctor will you see next about it? Teresa

@hopeful33250 Hi Teresa, I will see the same podiatrist on the 28th to get the results of the testing. I was thinking this morning, why is is that doctors want you to come in to hear results if the results are fine and there is nothing more to do? They all do it.
As I said, he said it could be fungal, so if it is obviously I do need to see him to decide a plan of action, but if not? I hate to spend the money on lasix but if it means getting rid of it more quickly then I will probably take that route. Being an infection it is possible for it to spread, even internally, from what I have read online.
I have had some great doctors and some who are not so great, but overall I am so tired of seeing doctors.
JK

@contentandwell I hear you loud and clear. I have some wonderful medical professionals, but I would like my life to be more than keeping up with appointments! I hope that your appointment on the 28th goes well. Keep us informed. Teresa

@contentandwell - I'm finally back to answer the rest of your questions in the last paragraph from your June 15th post. Earlier (June 15th post) I explained about my first daughter's passing. Another family member got a clean bill of health (did not have FAOD like my first daughter) after she had the flu and recovered on her own. She was 3 at the time. She was never a very physically active child and my husband and I just assumed it was not her thing. The beginning of the explanation came when she was 6 years old. She woke up and could not walk due to pain. She had emergency surgery that night (around 2pm because she was unable to wait for the appointment the next day with the orthopedic surgeon. She would cry in her sleep when she moved.) They thought she had an infection in her hip. She spent the summer getting IV antibiotics several times a day with a PICC line. She finished treatment and we went out to dinner to celebrate. She was unable to walk out of the restaurant. The next day they took out excess fluid from her hip (the joint that was causing all the pain) and sent us to the children's hospital 2 hours away to see a rheumatologist. She was diagnosed with Juvenile Ankylosing Spondylitis (AS) which is a form of arthritis that is an autoimmune disease. She has had trouble in most of her joints in her body (spine, fingers, ankles, toes, knees, hips, rib cage, wrists, shoulders) although thankfully not all at the same time. Her spine, hips, and knees are usually the most bothersome. Once medicated she began to run and play like other kids and really was a good athlete. In grade 5 she had a massive arthritic flare and was in a wheelchair. That "forced" us to start using the biologics you see advertised on TV (Remicade, Humira, Cimzia, Orencia, and Enbrel). She has been on them all because after a few years they stopped working. The good news is that they got her out of a wheelchair.

2 1/2 years later our third daughter was born and turned blue in my arms. They took her from shortly after the cord was cut and resuscitated her. My husband and I looked at each other and said "No more children." She ended up being fine, just came through the birth canal too quickly. In utero they did see cysts on her kidney which was the start of when doctors were realizing that PKD develops in infants (there is a recessive gene that is always in infants and often fatal but my family does not have that gene). When I was diagnosed at age 20 they thought the cysts started developing in early adulthood. With the increase of ultrasounds during pregnancies and more advanced ultrasounds (I was getting ultrasounds that showed blood flow through the heart etc. at the children's hospital due to my first daughter's death) cysts in utero were starting to be noticed. She has been seen by a nephrologist twice a year since she was in kindergarten. Everything is functioning normally right now and hopefully the med I'm in a study for will be approved (it slows down the growth of the cysts by 50%), my daughter can take it, and she will never need a kidney transplant.

@amynewheart - The longer myself and my children are patients the more I believe that we have to advocate for ourselves, even with good doctors. Your knowledge can cause more stress but also better care so that is a lot of pressure on you but it is also the best for you. You must have had good doctors if they paid attention to your comments.