This and That and Talk - My Transplant

@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, 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

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

@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

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

@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.