@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

@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

@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

@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

@contentandwell, It can be frustrating. I like to think that if it were a true emergency, that they would act quickly on your behalf.
Rosemary

@rosemarya - I have to keep count of my liquids due to the medicine I take for the Mayo study. Below is what I have found works for me, and after doing it for a month keeping track is automatic and drinking has also become automatic. Now I feel lost if I go anywhere without water. In fact, I think I spent the majority of my life dehydrated! Anyway, I use a water bottle that I know the size - my most recent favorite is 18 oz. So I fill it up, carry it around, and when I need to refill it I record my water in the Myplate app which is also where I record what I eat/calories. Sometimes I forget to count the 6.5 oz of milk in my oatmeal but that is negligible.

Now - my favorite water bottle (I've had many good ones but this one is pricey yet I think well worth the money) I bought at Dick's Sporting Goods. The brand is Hydro Flask. It is basically a thermos which is why I like it. I find I drink more water if it is cold so I put a few ice cubes in it and fill it up with water and it stays cold for an astounding length of time. I do this when I go to bed and by morning the last of the 18 oz is still cold! I have left it in a hot car for three hours and it was still cold! They come in many sizes but the 18oz fits in my cup holder in my Honda so that is what I use. It comes with a screw top lid which is a pain (can't use when driving etc.) so now you can buy a pop up lid with a straw. The only drawback - needs to be hand washed.

I share all this from someone who maybe drank 4 glasses a liquid a day prior to the study. I now drink a gallon or more so it is possible to learn to increase liquid intake.

@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.

@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