This and That and Talk - My Transplant

@contentandwell I'm sorry to hear about the fungus, not good. I always wear pool shoes, but I could probably still get it if I'm not careful. Teresa

@2011panc What encouraging and kind words! Thank you for your post. Teresa

@Thanks. I researched toenail fungus of course and obviously if you are on immunosuppressants you are also less resistant to them with your compromised immune system. I didn't know who to go to and I have been waiting for a call back from my PCP for two weeks now so I don't want to call him again. Interestingly, there is a podiatrist in Nashua, about 22 miles south of here, with the same last name and he is quite well rated. I just checked out those sites that rate doctors and I actually have two appointments, one on the 21st and one on the 23rd. I will decide which one to use and cancel the other.
Grrrr is right. I really did not need this and from what I have heard it can take a year for that nail to be fine again.
JK

@amynewheart, Yes! Yes! Yes! You have said it well - We love our transplant doctors and coordinators 🙂 Rosemary

@contentandwell - Well I have to share my experience with toenail fungus. Of course I'm pre transplant so keep that in mind. Do not do anything I did without asking your transplant team first. I actually had a minor toenail fungus for years and never knew what it was because it was slow growing and just a white spot on top of my big toe. Eventually I learned what it was and spoke with my GP. Obviously the pill (rx) available was not an option for me because it can damage the liver and/or kidney (forget which one). His suggestion was to soak my foot in bleach and water (I did about 50/50) every day for 15 minutes and that did stop the progression of the fungus. I did this for about 3 weeks and then stopped. Now it was just about getting it to grow out which does take about a year. Since my bleach soaking I started seeing a podiatrist for my plantar fasciitis and I mentioned the fungus. I started getting impatient thinking I needed to get rid of it before my transplant. She has some super duper sharp toenail clippers and cut my toenail back so most of the fungus was gone. The toenail gets so thick my clippers could barely cut them. She then did prescribe me Jublia (don't know if you could use this) which is topical. She said it helps some people. I've been using it since January and I don't know if it is changing anything or it is just that she keeps the toenail cut so short (BTW my podiatrist does not care how the toenail looks so don't expect your toe to look like you just got a pedicure!). Part of cutting it frighteningly short is so the medicine can get to the fungus. I keep meaning to start soaking with bleach again and use both methods but I have not made the time. All this to say that soaking in part bleach and part water definitely stopped the growth of my toenail fungus, now I'm just getting rid of the toenail. Letting your feet stay cool and not perspire so much helps prevent fungus but that is hard in the summer so I just make sure I air out my feet in the evening since I need to wear sneakers and inserts all the time for my plantar fasciitis.

Hope this helps! Good luck!

@contentandwell - Yes.

@contentandwell - I started getting monthly pedicures when my plantar fasciitis got bad because the foot rub felt so good and really helped. I just assumed I would not be able to do that after a transplant even though the tub is sanitized and the metal implements but the files etc. that are not metal are obviously used on everyone. It will be one of my questions once I get that far in the process.

Although, I think public pools are the worst for things that grow in moist environments. I know people who have gotten Molluscums (like a wart) on their legs and it took many trips to the dermatologist to get them dug out. Pools are tough I think.

@contentandwell - The reason I like biking outside is because I like to be outside and the natural wind you create biking cools you off and the scenery helps pass the time. Yesterday I did five miles in 26 minutes with an average speed of 11 miles an hour. Now that is easier on a real bike because of hills and switching gears but biking against the wind really slows me down (8mph) and biking up big hills (5 mph). The 24 mile ride was a total of 2 hours and 22 minutes in the saddle (on the bike) but that includes stopping for traffic to cross streets and stopping to drink. I averaged 10 mph on that trip. I really want to lose weight (still not happening) but my shape is changing because I can see it, people look at me and think I have lost weight, and I can buy clothes in a smaller size. Unfortunately my nephrologist only sees the numbers on the scale that are stuck between the same 5 lbs.

I think it is important for people to realize how grateful you are. It can be tiring being around a negative person all the time but who complains about being around a thankful person? What I learned after my daughter died was that the friends that were willing to be there through the tough times were the ones that stuck around (because I talked about grief and my daughter a lot) and God provided new friends to fill the gaps for those that could not handle my new reality.

Is your niece's husband on a list to get a transplant? Has he looked into getting a living kidney donor? Wash U is a great hospital but I don't know if they do living kidney donations. For general information the Mayo Clinic has great information on kidney transplants from deceased and living donors.

The way the Mayo Clinic does paired donations is that if my donor is not a match they find a match for my donor at one of the Mayo facilities (Rochester, Phoenix, or Florida) and then that person's donor might be a match for someone else etc. until a kidney eventually comes to me. I believe they have had a chain up to 8 people. Mayo flies the kidneys between the three sights and someone how times it all. I'm organized but it sounds like a crazy complicated thing to orchestrate. Not all facilities work together so it could limit a person's options but at least with a paired exchange your donor does not have to be a match for you (with kidneys, different for other organs I know) as long as the donor is willing to be part of the donor chain. Sometimes paired donation chains can be started by a person that chooses to donate a kidney and they do not have a recipient in mind. I think they call that an altruistic donor.

I learned about being proactive online and it is one reason why I went to the Mayo Clinic because I knew they did a lot of living kidney donor transplants for people with PKD, one of the benefits of the internet and having research at your fingertips.

@lcamino Lynn, thank you so much for sharing your experience. I have been wanting to hear some info from someone who has been through this.
Being summer is a mixed blessing. I generally wear sandals all summer so that lets my toes breathe, but of course I am afraid that if people notice my toes they will be sort of grossed-out. Interestingly the nail on my little toe lifted about a month ago and was just attached on the inside edge. It did not look discolored or anything so my nail tech trimmed back right to where it was rooted for me. We had assumed that I must have damaged it some way but now I am assuming that must have happened from fungus also.

I have three appointments set up with podiatrists right now. I have one tomorrow but it's a distance. It's a podiatrist my sister has been to for plantar fasciitis and she has known other people who have gone there and liked them. I also have an appointment about 20 miles away next week and one closer to home in two weeks. He is the one I would most like to go to but I hate waiting that long. Maybe if I do the bleach I can wait. I also plan to call my transplant team to ask what medications I should avoid.

The thought occurred to me this morning while putting on my slippers can this spread from wearing the same shoes? If so I wonder how long the fungus can survive inside of shoes, particularly my sheepskin lined slippers. I think I will try to find some inexpensive, comfortable slippers today that will not cover my toes. I saw some in Marshall's but they weren't that comfortable. I hate to spend the money on something like Uggs which are great but pricey. I have two pairs for cooler weather and love them.

I read somewhere that you can get toenail fungus in swimming pools! I am wondering what the podiatrist will say to that. In a chlorinated pool that seems unlikely to me but what do I know?

As I mentioned before though, I am scrupulously careful about not walking around the club in bare feet or anything like that.

Thanks again, Lynn. Looking fotward to you coming to Maine. ;-0
JK

@lcamino, Lynn, I've never been to Indiana, the closest I got was Chicago where I was assigned for four months, "way back when", and to Lansing, Michigan for my stepdaughter's graduation from Michigan State. Nice country out there. I loved being a single in Chicago, it was a fun city. I almost took a permanent position there.
JK