This and That and Talk - My Transplant

@contentandwell, I think your doctor and mine are on the same 'page'. A lot of things are written in stone, and there absolutely no room for leniency. And then there are some things that are up to us to make a judgment call. None of us wants to take unnecessary risks with our health, so we try the best we can...and enjoy our lives.
In my opinion, you are being very pro active and careful, and I really enjoy sharing ideas with you. (My friends think that after 8 years, that I am 'all better' and act shocked that I still keep up with my 'safe' regimen. So it is nice to have someone who understands). I also think that much of this, like pedicure and nails is so dependent on where/who is your technician. I feel same way about my hairdresser. She is very careful about keeping things clean sanitized. I have always felt safe there. But, on the other hand, there are some places that I don't even want to enter.

Infections are going to happen, even in best of environments. The best thing to do is if you do get one to seek early treatment.

How are you doing? I seem to recall you had a medicine dosage adjustment.

Myself, I have a teeny tiny kidney stone in my transplanted kidney. It is amazing that it turned up on a CT that I had done here at home for unrelated issue. And it was no big deal - until my kidney team saw it and wanted to investigate it further. I (we) are under a higher scrutiny with our transplants and immunosuppression. After full investigation, we are not going to treat it, but I do need to aim for drinking 3 liters of liquids daily. I always drink a lot anyway, but now it has become a conscious thing, and I am not good at keeping count!
Life is good!
Rosemary

@rosemarya Rosemary, it is frustrating. I of course tell anyone that might have any impact that I am a transplant recipient and on immunosuppressants. I put a message on my PCPs portal asking him for a recommendation for a podiatrist and explaining that having an compromised system I wanted to see someone as soon as possible. Of course I have not heard back from him. I am getting more and more disgruntled with him but it is hard to change. I know, I have to. I almost feel like he would like to see the end of me, he certainly is not being very attentive to my needs.
JK

@rosemarya Thanks, I do all of those things already except bringing my own equipment for nail work. I plan to ask my nail tech about that.
I asked my surgeon about hot tubs when I was there a couple of weeks ago. I told him I belong to a pretty pristine club and they test the water frequently. I hardly ever go in the hot tub, I use the sauna to warm up, but very occasionally I use the hot tub if I have been in the pool for a long time, about an hour or so, and no one has been in the hot tub in that long. He said that it was my decision but they generally do not recommend it. There are a lot of things they are very insistent on, like wearing a mask when flying.
I wear water shoes not just because I don't want to risk infection, but also walking over the pebbly surface around the pool is painful for me.
JK

I was diagnosed at the age of 26. Fortuanately for me I worked on a cardiac floor at the hospital. One night when we were slow we hooked ourselves up to the monitors and while walking i was found to have a heart rate in the 170s. I had previously had several episodes of dizziness but always found an excuse for it. From there my primarycare doctor order my echo and found my decreaed ejection fraction and so my journey began
Amy

@contentandwell, You bring up a good point about being " scrupulously careful ". I, too, try to be that way. And it is so frustrating when - in spite of best practice - something happens, like a toenail fungus, or athletes foot, of a swelling or redness on a scratch, or an upset tummy...I usually find myself trying to figure out what I 'did' or 'did not' do. And I end up playing the Blame Game.

A note to you, make sure that when you need treatment anywhere that is not your transplant facility, that you tell them that you are a transplant recipient and that you are on immunosuppressant medications. My PCP usually squeezes me in to see him.
Rosemary

After my transplant, I was given a 4-page paper about preventing infection after transplant. I do not know the source, or I would reference it here. And I do not know how strict or how long the adherence is recommended. But, I do want to share with you, what it says about this current topic that you are discussing. It is something to consider, or maybe ask your transplant team.

"Avoid all use of hot tubs, especially public ones. Swimming in pools or the ocean is okay as long as you do not have any open cuts or sores. Do not swallow the water. Wear water shoes or sandals when walking along the beach or wading into water from the shore.
Bring flip flops for the shower when traveling.
Bring your own equipment for manicures and pedicures if possible."

Does anybody else have any thoughts or information or experiences to share?
Rosemary

@lcamino, I had a great bike but when I was single but then I got very overweight and my daughter needed a bike in college I gave it to her. It was a nice, very lightweight bike that I purchased because I had to carry it up the stairs to the third floor in my apartment building. I may have to consider getting a new bike but I should rent or borrow one first. Unfortunately, this being NH there are a lot of hills. When I was single I lived in Boston. That is great that your shape is changing. You should really feel pleased with yourself for all of your efforts. I must admit, I feel pleased with myself for mine and having lost the weight and gotten into better shape. I have to wear my rings on different fingers now and people say I should get them made smaller but I sort of like them being on different fingers because it reminds me of what I have accomplished. I haven't mentioned that to anyone before.

Thanks too for your comments on my gratitude. I just don't want people to be rolling their eyes in boredom.

My niece's husband is on at least one transplant list. Now that I am thinking of it I think I will facebook message him and ask him how things are going. Recently I have not had time to be on facebook much though. I know when they moved from Wisconsin to Missouri last year he was going to list at a center closer to there. He thought he had a donor in one of his 10 brothers but it didn't turn out to be a good match. I can't imagine that one of them wouldn't be a match but only one stepped forward. I mentioned the Mayo in Arizona to him because I know they are great transplant center for kidney with less of a wait than many places. I don't know what the wait in Boston is but my wonderful surgeon is actually head of the kidney transplant center there along with being a liver transplant surgeon. He really is the best, I honestly feel his expertise contributed to my great recovery. I don't know if I mentioned this before, but if he was single (I presume he is married, he's in his mid-40s) and my daughter (she will be 35 next month) was not engaged I would be trying to play matchmaker. He is just her type -- dark, brilliant, and with a dry sense of humor. 🙂 I like her fiance a lot though too. I am just having difficulty now because their wedding planning has really brought forward a cultural difference. My daughter, having worked at a very nice restaurant with big wedding receptions, has always thought that was a waste and basically just wanted to elope or just have immediately family. Her fiance's parents come from India and expect a HUGE wedding, up to 200 people which they are actually willing to foot the bill for. I worry that my daughter is going to get over-stressed over this.
JK

@lcamino Lynn at the nail salons around here they give you disposable file after your mani or pedi, or throw it away. I believe they sanitize the metal tools too but I was thinking about that yesterday and plan to check on it.

Your comments on pools is not encouraging. I get the major part of my excercise in the pool so that will really set me back if they tell me not to use one. I am sure in our discussions they know I have been using one for exercise though.

I am even careful when I go to Pilates. Many people do it barefoot but not me.
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

@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