How far to go in order to avoid infections/diseases after transplant?

[kristina]

After transplant the immune system is greatly suppressed and there is a much greater risk of contracting an infection and/or disease.
I am wondering : how far one should go to avoid infections and diseases without going "over the top"?
For example: is it alright to continue and get books out of the public library that may have recently been handled by someone with some infection/disease etc. ?  Another example would be handling money ? Touching door-handles ?
It makes me wonder how long infections, diseases etc. “linger” ?
There must be many other examples of close interactions and if anyone has any experience of this and what they have been told by their transplant-team, I would appreciate any comments.
Many thanks from Kristina.

[justagirl2325]

My husband was basically told to live his life as he normally would (and he wouldn't be caught dead in a library lol) but just to take precautions.  Like don't eat undercooked meat, stay away from sick people, wash your hands.  For the first month we were together 24/7 and I passed him the hand sanitizer after every timed he touched a door knob or used a public restroom. He continued to use it on his own for a while, but I see that he has stopped.  He is 6 months post transplant now and it hasn't been easy for him.  During that time he's been to the ER twice with fever.  The first time he had a slight fever (101) turned out he caught pneumonia somehow (we're not sure) and the second time he was wildly sick (104) no one could tell us why and he was ok in two days. He thinks it was something he ate.  He got sick after eating in a restaurant out of town.

So my advice for transplant patients would be it never hurts to keep up with the hand sanitizer.  It seemed to work really well.

And if you're in a restaurant and you have an uneasy feeling, just get up and leave.  Don't worry about insulting anyone. 

[MooseMom]

Hello, Kristina.  I have always wondered just how immunosuppressed we are. 

As a transplant patient, I have monthly labs done to test glucose, creatinine, hematocrit, potassium, tacrolimus trough, and white blood cells.  When it comes to the wbc, I get a complete panel that shows me the levels of all of the "phils"...neutrophils, etc.  Every month those levels are perfectly normal, right down the middle of the "normal" range.

In the six years with my transplant, I have had one stomach illness (bad salsa!) and two colds, each of which lasted just 3 days.  So I can't claim to be severely immunosuppressed.  Our local library is my second home. 

I don't really do anything "extra" that I didn't do before.  Common sense things like washing my hands after gardening, avoiding being around a lot of young children, staying away from anyone who is obviously unwell.  I eat well (I know you do, too), sleep well and keep active.  I do the same things that any normally healthy person does to stay normally healthy, one of which is to keep my hands clean/sanitized and away from my face.  These are the things that my transplant team told me to do.

I hope this helps!

[UkrainianTracksuit]

Everything's been covered! 

All tx-teams will tell you to go out and live your life. They don't want you to live in a plastic bubble. The immune-system is suppressed but it is still there and does its job to an extent. A lot of it is common sense, such as, don't put your hands near your eyes, nose or mouth. If you need to, make sure you wash them first. Hand sanitizer is your best friend for public situations such as restrooms, door knobs or handles, or any place that you know has a lot of contact. It's true that hand-washing and sanitizing can dry out your hands after awhile, so buy yourself a nice (suitable for your allergies) hand cream.

We live in a forested place so we got the warning not to swim in lakes (parasites, etc).

You have to learn to become firm in telling people to not visit etc if they have any sort of infection. Sometimes you can't avoid sick people in public places so just be conscious if you hear/see people sneezing or leaving grubby hand spots. Avoid it if you can but don't be a shut-in!

As for food, as noted, be wary of anything that seems off or undercooked. I know that you know to avoid spoiled food. Skip the unpasteurized dairy or juices. Be wary of salad greens that don't seem as though they've been washed well or any places where they sit awhile. Once you have your tx, they'll go through this with you.

Like MooseMom said, at monthly blood work, we see our red and white blood counts. My white blood cell count is right smack in the middle of normal. My -phils and -cytes are all normal except for my lymphocytes. We know that is due to the medication and it doing its job so nothing to fear. There are those that say that as a result of this medication, that the risk of infection is higher, but I have been fine so far, and even done some stupid things. (touched a door handle at a mall, wasn't thinking, rubbed my nose...)

Rest is important too. You need your sleep to be healthy.

You are a smart woman so use your common sense and you'll be fine.

[kristina]

Many thanks for your kind suggestions, justagirl, MooseMom and Ukrainian Tracksuit, it is all very much appreciated!
After the transplant I shall be as careful as possible and I shall try to continue living my life without restricting myself overly too much and all within good reason... and I shall start with my training about it right now ...
At first all of this sounds really like a tall order, but being aware at all times and using common sense makes it possible after all. I shall also research about my best times to go shopping in order to avoid crowds etc. and ... I have just been wondering how to go about holding hands with my husband when we go for a walk...
... I did not concern myself overly too much about my being on the transplant-waiting-list, but recently I had my very first call and unfortunately it turned out to be false alarm, because the kidney did not "come up to scratch", but this experience made me suddenly sit up and think, as it is an indication that "things may get serious in the not too distant future"...
Many thanks again for your kind inputs, it is very much appreciated and kind regards from Kristina.

[MooseMom]

Kristina, if you've been able to avoid serious infection using a cath for dialysis for all of this time, I have no doubt you will do well after transplant.

I'm sure your local Boots has travel sized hand sanitizers that you can tuck into your handbag when you are out and about.

You know how much I fly and how I throw myself around London and the entire southeast of England, and I have been fine.  That said, I think it would be wise to take extra precaution during the first year after tx, as this is when your body will be getting used to the new meds and your dosages will probably be changing until you find just the right combination/dosages.

I have no doubt that your husband will be doing all he can to make sure you are safe!

[kristina]

Many thanks MooseMom for your kind analysis, that is very lovely of you and assists me to build a bit more confidence towards a transplant!
It is true, I do take the greatest care with my cath and hopefully it will continue to serve me well for as long as it is needed (touch wood!!!).
... I have just been thinking whether it might be a good idea to use some loose-fitting, disposable facemasks just after the transplant, whenever I need to go back and see the doctors, just in case there is some coughing & sneezing about ... and I shall visit my local Boots for sanitizers ...
Many thanks again for your kind sharing of your experiences from Kristina.

[iolaire]

(I wrote this early on Saturday on my work computer and forgot to post it.)
I was not cautioned much beyond staying away from public transportation and concerts or other large gatherings in the first three months after transplant.  (But they said church was ok, I felt like that was due to them thinking positive support for church members and someone's belief system outweighed the risk.  Not being a church person I see that the same risk as any other large gathering of people.)

I did wear medical gloves well cleaning up the leaves in the patio this year because of other people's comments on the forum.  I do use hand sanitizer frequently around work and wash my hands as soon as I get home from work.  I take a bus and metro to work each day.  If I was in proximity regularly with young children in daycare or school I probably would be worried about that.

FYI re face masks, I asked about the need for that on the metro and they said studies are fairly inconclusive that the cheap paper masks help at all, so they didn't recommend bothering with it. But clinics do have masks handy for people that are already contagious.

[Simon Dog]

My clinic has advised I will be instructed to wear a mask for a few months when visiting any hospital, using public transportation, or going places with large crowds

[UkrainianTracksuit]

About face masks...

Like the others, I was advised to avoid large crowds like concerts, public transportation and church. I’m a church person so that’s been the biggest life change so far. We had to fly home and I wore a face mask at the airport and on the flight. That’s been the only time I’ve used one and thought iit was a good decision in a cramped Dash-8 with people coughing.

My tx centre said it was up to me. They do not advise patients on wearing masks, since like iolaire said, the research isn’t that strong in favour of them. However, there is no harm in using one so if you want to, nothing to stop you from doing it.

I do have a bunch of masks on stand-by though just in case a situation presents itself, such as having to clean up after pets because no one is around, husband catches flu,, but they are not an every day thing.

One thing that you’ll realize is that you will see how normally you can live with a transplant. I am in the early months and I live like anyone else my age except I have 2 “new organs”. Prior to transplant, I panicked about all sorts of things, such as germs, and we must use common sense about that, but post-tx, unless I didn’t experience it, I wouldn’t know I had a double organ tx. And I don’t take extraordinary precautions.

[iolaire]

I’m a church person so that’s been the biggest life change so far.

....

My tx centre said it was up to me. They do not advise patients on wearing masks, since like iolaire said, the research isn’t that strong in favour of them. However, there is no harm in using one so if you want to, nothing to stop you from doing it.

See that is I think why my was center is ok with church, if its important to someone it probably would help their body and mental state more to attend than to stay away from the sick people...  I assume that this limitation is for the first three months?

I also think that one mask problem is that they don't fit will so the odds of it being effective is poor.  You read about that with chemical masks, if people don't know how to fit them then they are basically worthless.  So they don't recommend panic buying gas masks because they will not provide the protection expected to most people.  But that's not to say it would not be bad to use the masks...

[MooseMom]

I honestly can't remember anyone in my tx center even mentioning masks.

I had had a couple of boxes of those little paper masks stashed away in the cupboard (why, I can't remember), and I do remember wearing one for some reason or another.      Anyway, I found that when I wore it, my breath would steam up my glasses.  It was very distracting and uncomfortable.  THAT much I CAN remember!  LOL!

[UkrainianTracksuit]

Yes, the limitation was for the first 3 months. I’m out of that stage now so all clear to go. However, tx has revealed to me some of the misinformation about transplants in my religion so it actually caused more grief than help and healing! But, I understand your view that church may be helpful in healing to others.

[kristina]

Many thanks again for all your kind thoughts,iolaire, Simon Dog, Ukrainian tracksuit and MooseMom and your kind sharing of experiences is again very much appreciated. For at least the first three months I shall try to avoid public transport and whenever in hospital I shall try to protect myself as much as is possible... and ... sanitizers seem to be all-important & being aware and keep hands as clean as is possible at all times to avoid risks ...
Many thanks again from Kristina.

[kristina]

Many thanks again for all your kind thoughts,iolaire, Simon Dog, Ukrainian Tracksuit and MooseMom and your kind sharing of experiences is again very much appreciated. For at least the first three months I shall try to avoid public transport and whenever in hospital I shall try to protect myself as much as is possible... and ... sanitizers seem to be all-important & being aware and keep hands as clean as is possible at all times to avoid risks ...
Many thanks again from Kristina.

[Xplantdad]

Hi Kristina-

From a parent of a heart transplant of almost 28 years and the same "kid" who's had her new kidney since 2016...Each person is different!  Immunosuppression amounts varies wildly among transplanted folks. For example...Some folks may have a very robust immune system and may not metabolize the immunosuppressants quickly, while others may have a fairly weak immune system and metabolize the meds very quickly....hence the need for weekly, then bi-weekly, then monthly, then quarterly blood tests (as you get further out from the transplant)...to check on the levels of immunosuppression on the 'individual' and dial it in to their individual needs.

The idea is to suppress the immune system "just enough' that the body doesn't reject the newly transplanted organ-as this also gives you an immune system to fight the common cold, etc.

As was said above, if you've been free of any infections with a chest cath for any long period of time, you are already doing the right things, the rest is just common sense.

BTW-For the first three months, you are going to clinic pretty often and getting checked-so they advise you to stay away from large crowds

One suggestion that we brought up in the class for newly transplanted folks at Mayo...was to get rid of washcloths for washing dishes (If you do them manually). They can harbor germs. Just wet a paper towel...add your soap of choice and throw out when done!

We just got back from a 2 week long trip from AZ to Pennsylvania by plane, from Pennsylvania to New York city by train and from New York city to Canada and back to Philadelphia by rental car....Then back to AZ by plane.

No sicknesses-just common sense.

We DID notify the airline ahead of time that our daughter was a transplant....and they allowed her to board BEFORE anyone else...at no extra cost. The also said that they'd move us on the plane, if the folks around us were coughing or sick!

Ask away if you have any more questions

[Rerun]

I was told to not have cats (or cat boxes) and no birds because they carry disease.

[iolaire]

I was told to not have cats (or cat boxes) and no birds because they carry disease.

I was told not to do the cat boxes and have my wife take care of that.

[Xplantdad]

I was told to not have cats (or cat boxes) and no birds because they carry disease.

I was told not to do the cat boxes and have my wife take care of that.

Interesting-as we've had cats for Holly's whole life. We were never told that. Of  course Holly doesn't scoop the kitty pans


The only restriction we had when she was a child was to not have a live Christmas tree...but they stopped with that restriction early on....

[iolaire]

Interesting-as we've had cats for Holly's whole life. We were never told that. Of  course Holly doesn't scoop the kitty pans

The only restriction we had when she was a child was to not have a live Christmas tree...but they stopped with that restriction early on....

Basically they say I should live under the same limitations as a pregnant women for foodborne illness and general environmental risks.  So that means no shellfish, cleaning cat litter etc..  And those limitations have grown for pregnant women over the years.  The cat thing might be sort of new.  Obviously I'm not that concerned about mercury in tuna, but I have no problem staying away from large amounts of seafood - especially shellfish - and small amounts of raw tuna is one of the seafood that I see as safest and I'm most interested in eating.

I've opted to decide that some alcohol is ok (in impacts how the immunosuppressant's are absorbed - also the immunosuppressant's are hard on the liver so they don't want alcohol to stress it as well).  The manual said no drinks expect for a few special occasions.  The dietitian said it was ok much more frequently in limited amounts.  Generally I don't drink much for example over labor day we stayed a Kempton with nightly wine hour and I did have 2.5 drinks/night for three of the four nights.  Otherwise I'd say its a drink or two across multiple weeks.

[MooseMom]

I had a work colleague many years ago who was into her second trimester and lost her baby because of cleaning up after her cats.  It was dreadful.

Kristina, I know that you have an underlying condition of SLE/lupus, so how this affects your immune system on top of the meds is something you should discuss with your docs BEFORE transplantation.  Our stories may be interesting (or not!), but they are irrelevant to you, really!

[Xplantdad]

Iolaire, Holly doesn't drink alcohol-so no worries there.

Moosemom, Holly ended up with medication induced LUPUS-due to one of the blood pressure meds (if I remember right). They were able to treat Holly with different meds and she was okay after that.

As you said, not sure that this applies to Kristina...and your mileage may vary!

[MooseMom]

Moosemom, Holly ended up with medication induced LUPUS-due to one of the blood pressure meds (if I remember right). They were able to treat Holly with different meds and she was okay after that.

As you said, not sure that this applies to Kristina...and your mileage may vary!

Sorry, I should have been clearer.  My anecdote about my work colleague was not intended to have anything to do with Holly.  Iolaire mentioned pregnant women and cats, and I thought that as a general rule, what he was told about living under the same limitations as a pregnant woman was wise, especially knowing what happened to my colleague.  I just never forgot that, so that particular story just sort of fell out of my mouth.  I should have put it into better context!

My comment to Kristina was not intended to have anything to do with either cats nor Holly, either.  As you said earlier, immunosuppression varies widely amongst us, and on top of that, a patient's underlying condition/health is probably a factor, too.  Kristina has been very forthcoming over the years on this forum about her battles with chronic health problems.  I have not had to contend with those sorts of obstacles, so my thinking is that perhaps it would be best for her to follow more stringent precautions than some of the rest of us have had to follow.

Again, my apologies for not being clearer!

[kristina]

Many thanks for your kind thoughts, Xplantdad, Rerun, iolaire and MooseMom, it gives me lots to think about and get as well prepared as is possible.
It is true, that underlying reasons for ESRF might make the doctors to induce a different "route" of treatment after transplant. I have to ask the doctors about that and thanks for pointing it out! Even if a different treatment might "come along", your inputs have been very helpful and I do appreciate your thoughts very much. It is certainly a good idea not to use a washing-up-sponge and to use a wet paper-towel instead. It is also a very good idea to inform travel-professionals about a transplant, as it surely helps a lot to avoid the travel-crowd as much as possible whilst travelling!
I have also heard of induced Lupus through "the wrong" medicines and hopefully it won't happen in my case, as the Lupus is already unfortunately "established". Fortunately it has been "behaving itself" recently and hopefully it continues like that...
MooseMom, I am so sorry for your work-colleague who lost her baby because of cleaning up after her cats.  It must have been a horrific experience and I am very sorry for her.
Many thanks again from Kristina.

[MooseMom]

Kristina, another post tx thought occurs to me.

I wear a sterling silver medical alert bracelet.  On the front is engraved my name and the words "kidney transplant immunosuppressed".  On the back is engraved the name of my tx center and their phone number.  I wear this in case of an emergency so that first responders will have this information at their disposal.  This is something that maybe you can consider in the future.