Post Transplant Questions

[BrandyChloe]

I have a few questions for those of you who have already transplanted (mine is scheduled for 12/29/09).

1. How long before you were able to start exercising again? (Like in walking 3 miles.)

2. How soon after the transplant, can you have visitors? (I'm a little nervous about them bringing germs to me from the outside world.)

3. How soon after transplant did you actually take a trip away from home? (Hotels scare me with all their germs and the lack of really good cleaning by the cleaning staff.)

4. Silly one - can you still get pedicures once you have the transplant?

I have more but can't think of anymore right now. I know the doctors will advise me on all  this but hearing from people who have actually experienced it holds more weight with me.

Thanks!

Effie

[rookiegirl]

Hi BrandyChloe,

I'm excited for you getting a transplant.  Hope all goes well.

1. Exercising - It depends on each individual.  I know my Dr. recommended to move and walk around as much as possible. Unfortunately, for me it was difficult.  I really didn't get to walking until after 6 weeks. Everything just hurt.  But some people on this forum started walking right after surgery; amazing huh?
2. My Dr. told me to limit visitors and to inform my friends/relatives they need to be 48 hours free from sickness. I wore my mask when I had visitors and didn't let them hug/kiss me.  I did this for at least 6 weeks.
3. I didn't take a trip until 4mos. after my transplant because I was still going to the transplant clinic 2x/week.
4. Pedicures - Didn't really think about that.

Best of luck to you.

[kellyt]

I'm one year post transplant and I still don't exercise.      Not doctors orders though...   

I had visitors while in ICU.  I limited hugging and kissing.  I never had any problems.    Congratulations on your upcoming transplant.

Just wash your hands regularly and keep them away from your face, eyes and mouth.  Stay away from people who are obviously sick.

[jbeany]

My case was extreme, thanks to lots of complications, so I don't have good answers to most of this.  The patient education at my center included the information that you need to expect 2 days of recovery for every day of bed rest/time in the hospital.  (For me, that's 4 months before I can expect to feel back to normal.)

They will encourage you to walk and exercise almost immediately.  The sooner you do, the faster you recover normal strength.  It's all going to depend on your comfort level with the incision.  If you walk 3 miles a day now, you should be in good enough shape to resume that very soon after the surgery, though.

I had visitors in ICU and recovery - at least my sister and the 3 girlfriends who had driven me to the hospital.  I don't think adult visitors are a problem.  Every hospital room these days is equipped with a bottle of hand sanitizer.  The nurses request that all guests make use of it as they arrive.  Of course, tell them not to visit if they have a cold.  I don't think most people have trouble understanding that.  I'd limit visits from kids - if the hospital even lets them in the front door.  My center stopped allowing any visitors under the age of 16 when the swine flu started, and they haven't let them come since.

I went to my sister's house for recovery after 2 months in the hospital.  I immediately began going shopping, church, etc.  I just carried hand sanitizer and used it frequently.  The little yellow masks are actually useless for protecting yourself - all they do is keep your germs from everyone else - so I never wore one.  I never had a problem.

Pedicures are a health risk for healthy people.  If you intend to have them, make sure you bring your own instruments, and make sure the salon follows sanitary procedures.  I'd advise avoiding them until you are down to the lower doses of all the meds, so you aren't at such risk.  After that - heck, if you love them, then don't let the transplant deprive you of them permanently.

[kellyt]

Good call on the pedicures.  I waited six or seven months until I got a pedicure.  I had no problems thankfully.  I just had another pedicure last week.  My feet were horrible.

The day I discharged from the hospital my husband and I went to the grocery store.  I road around in the electric cart after I thoroughly wiped it down, inclouding the seat.  I stil don't attend large crowd functions, but we're in the cold and flu season.  I stay away from strange kids, as well.  No Chucky Cheese birthday parties, etc.

Also, no tampons until your team gives the okay.  No submerged hot baths - you want to avoid infection at all cost to your incision and such.  But really, there's no need to become a hermit or anything.  Just use your common sense.  My doctor said the worst place to be is in the hospital.     No grapefruit or things that include grapefruit, no raw meat, cookie dough  , raw eggs, blah, blah, blah.  Make sure your food is cooked properly.  Again, common sense stuff.

[BrandyChloe]

Thank you for your replies. I enjoy my pedis but could give them up if necessary. That was my other question - how long before I can go back to Mass? I use hand sanitizer now after the sign of peace and don't expect to stop after the transplant either!

 

[okarol]

We live 2 hours from the transplant hospital, so Jenna stayed in San Diego/La Jolla for 2 weeks, then came home for a weekend visit. The total time away from home was 5 weeks because there were so many appointments to get the immunosuppressant level tuned in. Then it was another month of every 2 week visits.

[jbeany]

Thank you for your replies. I enjoy my pedis but could give them up if necessary. That was my other question - how long before I can go back to Mass? I use hand sanitizer now after the sign of peace and don't expect to stop after the transplant either!

 

I think that kind of depends on the size of your church.  If you live in a small town, and there's only 40 or 50 people there on the average Sunday, that would be less danger than one of the big city churches that commonly have hundreds of people there.  (My brother-in-law likes to go to the church where his father is a deacon.  Silly me, I was picturing the church like the ones around my hometown.  When we got to BIL's church, our pew section alone held more people than live in my hometown.  There must have been several thousand people there.  If I'd had any idea, I wouldn't have gone!  I just kept up with the hand sanitizer, didn't join hands or hug anyone, though.  I was fine.)

[BrandyChloe]

I have a kidney buddy here in Jax that had a transplant in June. She told me manual razors are no longer possible - I need to get an electric shaver. Any of you been told that?

[kellyt]

I was never told that about razors.  I change the blade regularly, but that's about it.  Nothing too drastic.  I also keep my toothbrush enclosed in a hard plastic case, which I clean in the dishwasher and replace regularly (replace your toothbrush regularly, too).  I also keep that hard case and toothbrush in a drawer and not out in the open.  I use pump soap primarily when washing my hands and also buy a good "nail brush".  You carry a lot of bacteria under your nails.  Oh, and if you bite your nails stop that too.

I wipe down the grocery baskets when I think about it (handles and the sitting place where I put my purse).  I keep the sanitizer in my car and try to remember to use that whenever I get back in my car.  I use the Clorox wipes on a lot of stuff.    But I've got to be honest, I'm not crazy weird about it anymore.  I was for the first 3-6 months, but it's just not possible to clean everything.  Keep your hands away from your face, eyes, nose and mouth.

Oh yeah, I don't do free food samples anymore at the grocery store unless he/she gets it right off the hotplate and just took it out of the package.  You don't know how long it's been sitting out, etc.  I'm careful with eating leftovers, too.

No more raw cookie dough!  Get your fill now!       My doctor also said no new pets for the first year after transplant.

It's truly not that difficult.  Don't drive yourself crazy.  Use your common sense.  You'll be just fine.

Oh, stay away from children who've been vaccinated with live vaccines for about 6 weeks after vacinnation.

For our Christmas Eve party at my brother's house we had just finger foods and such.  We all make sure that my stuff is either kept cold or warm, whatever it needs.  And after a few hours I just stopped eating anything accept bread or chips.  No more all night/day grazing. 

[BrandyChloe]

I was never told that about razors.  I change the blade regularly, but that's about it.  Nothing too drastic.  I also keep my toothbrush enclosed in a hard plastic case, which I clean in the dishwasher and replace regularly (replace your toothbrush regularly, too).  I also keep that hard case and toothbrush in a drawer and not out in the open.  I use pump soap primarily when washing my hands and also buy a good "nail brush".  You carry a lot of bacteria under your nails.  Oh, and if you bite your nails stop that too.

I wipe down the grocery baskets when I think about it (handles and the sitting place where I put my purse).  I keep the sanitizer in my car and try to remember to use that whenever I get back in my car.  I use the Clorox wipes on a lot of stuff.    But I've got to be honest, I'm not crazy weird about it anymore.  I was for the first 3-6 months, but it's just not possible to clean everything.  Keep your hands away from your face, eyes, nose and mouth.

Oh yeah, I don't do free food samples anymore at the grocery store unless he/she gets it right off the hotplate and just took it out of the package.  You don't know how long it's been sitting out, etc.  I'm careful with eating leftovers, too.

No more raw cookie dough!  Get your fill now!       My doctor also said no new pets for the first year after transplant.

It's truly not that difficult.  Don't drive yourself crazy.  Use your common sense.  You'll be just fine.

Oh, stay away from children who've been vaccinated with live vaccines for about 6 weeks after vacinnation.

For our Christmas Eve party at my brother's house we had just finger foods and such.  We all make sure that my stuff is either kept cold or warm, whatever it needs.  And after a few hours I just stopped eating anything accept bread or chips.  No more all night/day grazing. 

Ha! I gave up cookie dough ages ago - got a scare from someone getting sick eating the raw egg. I quit biting my nails a couple of years ago when I got my braces off and the ortho put permanent braces behind my front top and bottom teeth. Couldn't get a hold of the nail anymore so that bad habit went out the door. LOL

I do wipe down the grocery cart when I go food shopping but never realized how many times I touch my face, eyes, nose and mouth. Habits to be broken!

Thanks for the advice. Surgery is Tuesday and I'm getting antsy.

 

[kellyt]

I'm so happy for you!  I'll be thinking about you on Tuesday!  The stay in the hospital was the worst part for me.   Congratulations!   

[YLGuy]

Thank you for your replies. I enjoy my pedis but could give them up if necessary. That was my other question - how long before I can go back to Mass? I use hand sanitizer now after the sign of peace and don't expect to stop after the transplant either!

 

Do you normally take the cup and do you plan on doing it after transplant?  I am curious for myself.

[rookiegirl]

I still take communion at Mass but I don't drink from the cup; only the Eucharist.

[kellyt]

I'm not Catholic, but if I were I wouldn't drink from the cup either.  The church I grew up in (Lutheran) had a tray of little mini shot glasses and everyone took one and put it back.  I used to follow behind Pastor so that they could take a glass and then replace it.  That's the most sanitized way.  Every church should have that.  That little wipe of the goblet is just not good enough these days...for anyone.

[jennyc]

Yeh, being catholic i was alway (even before renal failure) sceptical about the chalice, i worked as a pub manager for years and had to have hep shots becuase of the saliva and blood. So drinking from the chalice was always icky for me so i just took the eucharist.

as to the conact, in hospital we were in a single isolation room, max 2 visitors at a time who had to be clean, wear plastic coats and go through a washing procedure. I don't do the kiss/hugs/hello thing anymore, some of those around me get offended but i don't care. If they want to be selfish and expect me to put myself in jeopardy just to kiss them hello then thats their problem, no way am i going to risk it when i've had such a rough trot (my tac levels are being kept between 10-12 due to severe rejection... vascular and cellular) and they have no intention of dropping any of my med levels until much later than most patients (yay, fun). At home i only do cheek kisses (they kiss my cheek) for hubby and son. Son knows not to breathe on me and if he wants hugs he normall rests his head on my chest or puts his back to me and get a hug that way. we have hand sanitzer everywhere now as well.

[openboat]

1. How long before you were able to start exercising again? (Like in walking 3 miles.)

I was walking the floor in the hospital the next day.  It seemed like miles, but I was so slow it probably didn't add up to a mile all day.  I was walking 2-3 mile in one stretch within a few weeks, and at three-months post-Tx I walked a 10k race. (The Peachtree Road Race, in 1:39:09  )  Once the incision had healed (a week or two) the doc's just said don't do anything that hurts.  Now at almost a year I'm down to around a 1:12 10k, about half walking and half running.

2. How soon after the transplant, can you have visitors? (I'm a little nervous about them bringing germs to me from the outside world.)

I had visitors (family) the evening of my transplant.  I didn't get up to my room until around 7:00 PM, and my sister was already on the same floor recovering from the donation, so they were there waiting for me.  No kids, nobody sick, and I used *lots* of hand sanitizer.   

[BrandyChloe]

Yeh, being catholic i was alway (even before renal failure) sceptical about the chalice, i worked as a pub manager for years and had to have hep shots becuase of the saliva and blood. So drinking from the chalice was always icky for me so i just took the eucharist.

as to the conact, in hospital we were in a single isolation room, max 2 visitors at a time who had to be clean, wear plastic coats and go through a washing procedure. I don't do the kiss/hugs/hello thing anymore, some of those around me get offended but i don't care. If they want to be selfish and expect me to put myself in jeopardy just to kiss them hello then thats their problem, no way am i going to risk it when i've had such a rough trot (my tac levels are being kept between 10-12 due to severe rejection... vascular and cellular) and they have no intention of dropping any of my med levels until much later than most patients (yay, fun). At home i only do cheek kisses (they kiss my cheek) for hubby and son. Son knows not to breathe on me and if he wants hugs he normall rests his head on my chest or puts his back to me and get a hug that way. we have hand sanitzer everywhere now as well.

Even before the transplant, I never took the wine. Always seemed gross to me. Now, it's definitely a no!

They didn't have any restrictions on my visitors but Mayo has hand sanitizer and masks every where. People were good about not approaching me for a hug. All went well and my 3-month anniversary is a week from Monday.

I was always paranoid about germs but now, I see things I never noticed before! I know I can't live in a bubble so lots of hand sanitizer for me too!

[BrandyChloe]

1. How long before you were able to start exercising again? (Like in walking 3 miles.)

I was walking the floor in the hospital the next day.  It seemed like miles, but I was so slow it probably didn't add up to a mile all day.  I was walking 2-3 mile in one stretch within a few weeks, and at three-months post-Tx I walked a 10k race. (The Peachtree Road Race, in 1:39:09  )  Once the incision had healed (a week or two) the doc's just said don't do anything that hurts.  Now at almost a year I'm down to around a 1:12 10k, about half walking and half running.

2. How soon after the transplant, can you have visitors? (I'm a little nervous about them bringing germs to me from the outside world.)

I had visitors (family) the evening of my transplant.  I didn't get up to my room until around 7:00 PM, and my sister was already on the same floor recovering from the donation, so they were there waiting for me.  No kids, nobody sick, and I used *lots* of hand sanitizer.   

Yeah, they had me walking the next day but I was having a lot of drainage so I really limited my walking as I would leave a trail of fluid every time I took a lap!

I still haven't been cleared to use my eliptical trainer (I will be 3 months post transplant a week from Monday) so I can't wait for that day. Once I started PD, I got my own eliptical trainer. Gyms are so unsanitary.

Mayo also allowed me visitors right after the transplant (even though I was in ICU for a couple of days). They just made everyone use the hand sanitizer before they came in the room and my family was very good about not hugging and kissing me. My brother was also on the same floor recovering from his donation.

Aren't siblings great? :-)