This and That and Talk - My Transplant

@amynewheart Wow, Amy, that is amazing! I do not want to wonder what might have happened if that had been a busy night.
You said that you were working on the cardio floor, so I am guessing that you are somehow medically trained or a medical background to some degree. Do you feel that your medical background had any effect on your transplant journey? I ask because, I was completely ignorant of anything medical or hospital or even transplant. I have always wondered what it might be like for someone who was more familiar with the situation.
Rosemary

@contentandwell - Well I just came from my podiatrist today and she thinks my fungus is gone but I'm going to keep using the Jublia for three more months to be safe. There is a little nail that is thick and she is not sure if that is fungus so we are going to be safe. My plantar fasciitis is doing much better so I can use flip flops or sandals (good ones with support) in morning and night to help keep things dry (4-5 hours tops). I'm going to soak with bleach and water every so often too to make sure it is all gone. As my GP said, bleach is great at killing germs. One of the things that is hard about getting rid of the fungus is that it is under the nail bed so it is hard to get the medicine in there which is why soaking in bleach and keeping toenail very short will help reach the fungus that is closest to your cuticle.

I remember at the very beginning of treatment being told to Lysol the inside of my shoes but I did not keep that up so that would be a good question for the doctor you see. I don't understand why it does not spread to other toes or why my husband has not gotten it from the shower so the spreading of the fungus is a mystery to me. I don't quite get how we get the fungus in the first place but my doctor thought it was because I wore sneakers all summer (all day because of my plantar fasciitis) so my feet were very sweaty and hot. Not sure why I only got fungus in one toenail so I don't know.

Some are very highly chlorinated and some are not. Also, chlorinating the pool does nothing to control the deck and change rooms that are often always wet and nasty. It is my understanding that chlorination helps with controlling germs but is not a guarantee. I guess you just have to do what your transplant team says is permitted and deal with an issue if it arises.

I'm not looking forward to this germ sensitivity. I'm already a bit of a germaphob. My first daughter had a cold right before she passed away (later found out it was RSV) and the doctor told me to go home and Lysol the countertops etc. Well I have been a Lysol freak ever since. My husband says we should buy stock in Lysol.

@contentandwell - Well I'm not sure I would be biking as long in NH because of the hills. We have some hills but there is a lot of flat farmland as well so I can mix it up. Of course, if you let yourself go fast enough down the hill it can help you get up the next one if there are no stop signs etc. We have a lot of trails where I live (for walking, bikes, running etc.) so I usually stick to those so I don't have to worry about the traffic.

I'm sure your niece's husband knows this but you can be on multiple transplants lists at once. The lists are set up by regions (determined by UNOS I think) with the average wait of 5-7 years but the waits on each coast is much longer (over 10 years I believe). If he had a brother that wanted to be a donor to him but was not a match and was otherwise healthy enough to donate then if he got connected with a hospital that does paired kidney donations his brother should still be able to donate. For example, one of the Mayo sites could get them in a kidney donation chain assuming both "passed' the preliminary health screenings. The Mayo Clinic in Rochester is number one in the country for living kidney transplants although obviously all three would be fine. He might want to inquire at Mayo if his brother is still willing to donate.

@amynewheart - Thanks for sharing Amy. I find that personally reassuring that you had no idea that you had heart issues and it sounds like it was a "fluke" that you got a signal that something was not right. I don't spend time thinking about it now but when my daughter passed away from congestive heart failure (they found dilated cardiomyopathy after she died) I had this nagging feeling that I should have known, had a sign, questioned. Logic tells me otherwise but there was always a nagging feeling of "if only". Thank you for sharing and once again reminding me that there was very little chance of me, or the doctors, figuring things out until it was too late. I really appreciate you sharing because my query had a selfish intent.

@lcamino I found a different doctor, in Nashua so about 20 miles away and got an appointment with her tomorrow at 12:30, a cancellation so I was lucky. I cancelled all of my others.
I also called my transplant team and asked what drugs I should not take. There was only one, fluconazole, and if that is necessary they said they would change my tac dosage. I presume they would increase it. I also asked if it was OK if I had the laser treatment and they said yes, Anyone know anything about laser? From what I have been able to determine it would cost about $1000 and is not covered by Medicare because it is so new but I have read good reports about it. I am thinking that despite the cost it may be the best option because I could get rid of the fungus pretty much immediately and that would be great since fighting it off will be tougher with my compromised immune system. I just hate to spend the money. It seems like recently money has been flying out the door. $6000 for my new hearing aids was not easy but what could I do, I needed them, and I had to make deposits on our VRBOs for our vacay in the fall, plus charge airline tickets. UGH, but honestly, my husband and I deserve that and going with my son made it Irresistible.
Unfortunately my Iphone right now will not connect to the internet so my hearing aids are less useful, they connect with the phone so I can hear people on the phone better. I am really handicapped without that feature.
JK

@rosemarya Rosemary, it really is nice to be able to connect with people who are on the same page and understand. I agree about you have to be careful who you go to for nails. A number of years back when my son was married for a couple of years his wife brought me to a salon to get our nails done. She had a mani and pedi. I looked at the place and had my polish changed, nothing else.
My hairdresser is great too. Both my hairdresser and nail tech who are at different salons have become friends of a sort. I have been to church with my hairdresser, and my nail person is on my facebook and when I was having problems she asked if she could connect with my daughter in case anything went wrong with me. She was really concerned.
I am doing well, thanks. I am no longer on prograf, just 3 tac, two times a day. I am also taking imodium which I think I will cut back and see how that goes.
The three liters of water is pretty equivalent to my 80 to 100 ounces of water. I have a couple of water bottles I use when I go to my club and I have noted the number of ounces each hold plus I use a big cup at home to drink from and I measured that too. I keep track by how many fills each of them had. When I go to the health club I generally drink two of the one that holds 3.5 cups so that is a big part of my requirement. The other option is to fill something with water in the morning and that way keep track. I have done that too with a 2 quart water carafe. We have to use whatever we canto help us.
Speaking of helpful aids, I don't know how I would manage without the alarm on my phone. I have it set up to remind of my meds so an alarm goes off. The tacrolimus I take at 9:00 A.M and P.M. so I also have it set at 8:20 to remind me to pack my pills when going to the club. My class starts at 9:00.
JK

@rosemarya I have simply lost faith in him. I put a message on the portal three weeks ago and he called me a few day later but I was in Boston having lunch with friends so my ringer was turned off. I tried calling him back and then he called me back but that time for some reason he also didn't get me. He said he would call again but has not. I loved this doctor initially, he was very caring and attentive but not anymore. I even put a five star review of him on one of those doctor rating sites!
JK

@lcamino, It probably doesn't spread in your home shower because any germs get rinsed away - that sounds lame. When I use a shower moisturizing cream I usually spray a cleaner on the bottom of the shower afterwards so it won't be slippery. I don't bother to rinse it because we always have to run the water for a while before it gets hot. Maybe I will start doing that all the time.
After my water class I shower and then take a sauna so I will be really dry getting into my clothes and as I have said I ALWAYS wear shoes. When I see people walking around there barefoot I cringe.
Lynn, I am sure you must have posted information before since you are referring to it, but could you please refresh my mind? What did your daughter die from and how old was she? It's almost impossible for me to imagine how horrible to see one of your children die. Just thinking of it pains me. Also, why is your other daughter on immunosuppressives?
JK

@contentandwell,  I noticed in your post that you said that you are
no longer on Prograf but take 3 tac twice a day.  FYI:  If tac
is short for tacrolimus, you actually are still taking Prograf. 
Prograf is a brand name, tacrolimus is the generic name.  It sounds
like you are doing well and I am glad for you for that.

@lcamino, I am sure my nephew-in-law has looked into all of that. He and my niece are both truly brilliant and very diligent. I don't know about his brother, maybe there was something reason they felt he should not donate. I would hate to bring it up to him, there had to be a reason and maybe if his brother just decided against it it is painful.
There are a lot of walking trails in town I will try to remember to check to see if you can bike on them if I decide to invest in a bike. They are not cheap these days. There are no stop signs in town except on the main east-west highway, route 101, that goes through town. The town is semi-rural, you need at least 1.5 acres to build and most people have their own wells and septic.
JK