Question about Transplants

[Riverwhispering]

I'm still pre dialysis, ready to start soon.

Just curious about this... I've read people that have had transplants talk about not being around people with colds or that are sick.   What do people do if they have small kids at home?   I was also thinking my grandson is almost 3 years old and knowing how kids get colds and whatever at that age, I wonder if I had a transplant and got sick and died from being around him when he had a cold what kind of head trip would that do to my son and his wife knowing I died because i was exposed to a sick child.  You know, maybe he had something but didn't come down with symptoms until later when he was back home.

My mind is wondering a lot about the choice of transplant.  Right now I would have to lose a lot of weight first and since I have no medical insurance or help until i start dialysis what chance would I have to afford the transplant and meds etc.

Also I'm 63 and I believe there is a age limit on transplants.  Anyone know what that age is?

So many questions so little time

[Poppylicious]

I used to read stuff (mostly on this site) which put me in a panic about Blokey having a transplant.  There's posts about people wearing masks (masks were never EVER mentioned to us) and how to prepare your house for transplant (I gave everything a good scrub prior to us going into hospital, and was anal with my alcohol-infected wipes for about three weeks after Blokey came home but now just carry on as before - I'm easily bored) ... I suffered terribly from a cold for about six days over the New Year (two months post-transplant).  I shared a bed with Blokey at this time and couldn't help but breathe in his presence ... did he get a cold?  No! 

*sigh*

Every time he goes to the hospital he's potentially mixing with somebody who could give him something his immune system wouldn't cope with.  At first he was using hospital transport three times a week and having to sit with up to four others and goodness knows what they may have passed on!  He's now back at work full-time, we go to the cinema, we go to restaurants, spent a day cooped up in our small house with a snot-infested six year old.  I work in the education sector and use public transport, so I come into contact with oodles of potentially harmful things.

So far, we've been lucky.  I don't doubt that one day he'll catch a nasty bug (at Christmas we spent some time with my outlaws and upon arrival we discovered that my BiL was poorly with a stomach bug and we did umm and ahh about whether we should stay or go - we stayed) and it will knock him for six and things may get worryingly bad, but we can't live in fear of that happening.  Now he's been blessed with more of a life than he used to have we need to make the most of it; we don't know if we've got one week, or twenty years, or an entire lifetime before Our Kidney rejects. 

I'm not saying we're not careful, and I'm not saying I don't worry (I do slightly panic everytime I hear him sniffle, and I will nag him about food and washing his hands and keeping an eye on his moley skin!) but some things can be beyond our control and those are the things we can't spend time worrying about.

Sorry, I've waffled.

If you need a weight-loss 'buddy' I'm your woman - I had to lose A LOT before I could donate to Blokey!

[willowtreewren]

River,

Carl got a transplant a year ago. He was 63 when he go it. Now get this....he is a preschool teacher! That is a whole different ball game than being around one grandchild!

For the first couple of months after his TX he stayed out of the classroom pretty much, and just did office work. But this year he has been in the classroom full time. So far, there have been 3 cases of fifth disease (children are contagious before symptoms manifest), 2 cases of pneumonia, and various stomach ailments among the kids in his class. He carries hand sanitizer with him all the time and uses it frequently, but other than that, he doesn't do anything special to keep from getting sick. The biggest thing is staying hydrated.

I think from everything the docs told us and we have read is that the biggest threat (other than being more susceptible) is that if he should get something that causes him to be dehydrated or he can't keep his meds down, he might need to be hospitalized to help avoid a rejection episode.

We have taken a "what will be, will be" attitude. He is careful and takes his meds "religiously." He is also much better about staying hydrated (because he has a pain in the a$$ wife who will nag him if he doesn't).

Just live a clean life and stay as healthy as possible. Otherwise, don't fret. Fretting is NOT good for your health! 

Aleta

[ToddB0130]

Oy. Schools and hospitals can be S.C.A.R.Y.  I have a friend who works in a hospital (administrative - surgical appointment scheduling).  He is HIV+ and I often think that is the last place he should be working with a comprimised immune system.  I'm sure that there are lots of medical professionals in his situation,  but still ..hospitals .... YIKES.  Full of sick people.  Ha Ha.

[Riverwhispering]

Poppy I would love to know how you lost the weight.   I've been at a loss for ideas being on this pre dialysis eating.  Any suggestions would be great if that's possible because being limited on what I can eat makes it hard to diet like most people.

I still don't have a clue if I would be able to afford a transplant and the meds.  I have no medical insurance and can barely pay for the labs and to see my Neph doctor every 4 to 6 weeks.   I wish I lived in a country where they took care of medical like Canada and England etc.

I also read some post mentioning something about medicare after three years transplant they cut you off?  Not sure about that one.

Life sucks sometimes

[willowtreewren]

I also read some post mentioning something about medicare after three years transplant they cut you off?  Not sure about that one.

River, you will not have to worry about that as you will be eligible for Medicare based on your age at the end of three years post transplant. 

I have lost 30 pounds since June. I looked around the Web for apps to help. LoseIt and SparkPeople are two that are similar. They have you simply track EVERYTHING you eat and what exercise you do. Those strategies are effective regardless of your renal food restrictions. It all comes down to using more calories than you consume in moderation. If you try to lose too fast or by eliminating key foods, you won't be doing your body any good. Slow and steady is important in weight loss. It takes about three weeks to change habits and that is true of eating habits, too.

Good luck with the weight loss. One of the things that has helped me is not worrying about how long it is going to take me to get to the weight I want to be, because that time is going to pass anyway. It can either pass with my staying the same (and dealing with the same health issues) or it can pass with my losing weight and improving my overall health along the way.

 

It hasn't be easy and it is going to be months more, but worth it.

Aleta

[Riverwhispering]

Aleta that's great to know.   I will be on medicare as soon as i start dialysis and I think the age thing is 65 if you are healthy so that's one less worry.

I'll give it a go on counting calories.  That should actually be quite easy using the spread sheet I made for myself with renal friendly foods.    I just happen to have the calories included.

Did you set a target amount of calories per day?

[willowtreewren]

Did you set a target amount of calories per day?

Not really....I ended up using Spark People and one of the "reports" shows the differential between the number of calories you consumed and the amount you used in your activities. I always try to make the use be about 500 calories more than I took in. to be honest, I increased my exercise quite a bit. but I find that I really feel better when I'm exercising, so that became a real reward....

I made the mistake of NOT varying my exercise routine and ended up with not one, but two badly inflamed rotator cuffs. That put my normal exercising on hold for two months. I was able to increase my walking during that time, though.

These are free apps. Del (another IHDer) is using LoseIt. I think it has similar functions, but I had already started using Spark People and didn't want to switch.

The down side of these apps is that you have to log in on-line....not always easy. they have phone apps to go with them. When I started I did not have a smart phone, so I was somewhat limited. I do now, so logging in can happen any time.

I think the biggest benefit to a program like this is actually becoming very aware of what you are eating. Since you are on a renal diet, this part should be easier for you.

One interesting thing I have found, too, is that when I reach a plateau, I no longer worry about it, because if I just keep up with my plan, there is a rapid loss when my body finally "gives up" holding onto the weight. 

So I might go 2 weeks without losing anything and then lose 5 or 6 pounds during the third week. Hang in there. 

It really, really is worth it.

It's harder for us "older" folks to do this (I'm 60), but it certainly isn't impossible.

One other thing I did, was give myself a real reward fro every ten pounds. Not a food reward and not a new clothes reward (because I know I'm still losing). I go out and get a pedicure! 

If that's not your thing (and it didn't use to be for me), think of something else. 

Aleta

[Marina]

 Rule of  thumb  is  to  wash  (or  sanitize)  your  hands  often.                I  carry  a  sanitizer in  each  jacket  and  another in  my  purse.
I  never  eat  anything  I have to  touch  without  cleaning my  hands.
I  also  try  not  to  touch  my  face.
When  pushing  elevator  buttons  do it  with  your  knuckles.
when  opening  doors,  do  NOT touch  handle unless you  absolutely  have  to,  use  kleenex  or  napkins  when possible.             Push  door  with  knee  or  back into  door.      Or  sanitize  after  you  touch  it.

I  work  with  the  public,  I  wear  gloves  while  at  work.


Post  TX  while in-patient,   there  was an   RN  who  had  had  a kidney  TX  11 yrs  prior.
When she  found out  I  had  a  TX  she  sat  down  with  me  and  talked  about her  experience.
She  said  that  the  other  nurses  know  of  her  TX  and  when  possible  they  switch  patients  so  she  won't have to  care  for  those  with  contagious  infections.

Upon  discharge,  my  coordinator  told  "don't  forget  kids  are  germ  magnets,  if you  go  spend  the  day  with  the,  when you  come home,  shower"         I  never  have,  although  sometimes  I  think I  should.
But  I  sanitize  often.   the  kids  even  ask  for  sanitizer   all the  time.

[Poppylicious]

Poppy I would love to know how you lost the weight.   I've been at a loss for ideas being on this pre dialysis eating.  Any suggestions would be great if that's possible because being limited on what I can eat makes it hard to diet like most people.

I still don't have a clue if I would be able to afford a transplant and the meds.  I have no medical insurance and can barely pay for the labs and to see my Neph doctor every 4 to 6 weeks.   I wish I lived in a country where they took care of medical like Canada and England etc.

WeightWatchers - 120 Ibs and still a little more to come off.  However, I don't have to stick to a renal friendly diet as I'm not the partner with the failed kidneys.  I agree with Aleta though; exercise is a must (if possible), if only because whle you're exercising you can't actually eat ...

 

I will say that if there's something you really love munching on but it's a little bit naughty (or even something 'forbidden') make sure you have a bit once in a while, even if it's only the teeniest amount.  Depriving yourself of something is silly because it just makes you want it more, and all the hard work you put into changing your eating habits can be seriously undermined in a weak moment! 

I have to be honest, I am grateful that I live in England sometimes, but it isn't necessarily a good thing - testing for things (cancer, for example) can take longer and may not be as vigourous.  It's swings and roundabouts really. No system is perfect; some are simply easier to deal with and understand.

[kristina]

Oy. Schools and hospitals can be S.C.A.R.Y.  I have a friend who works in a hospital (administrative - surgical appointment scheduling).  He is HIV+ and I often think that is the last place he should be working with a comprimised immune system.  I'm sure that there are lots of medical professionals in his situation,  but still ..hospitals .... YIKES.  Full of sick people.  Ha Ha.

Hello, Todd, thanks for mentioning this. May I ask you a question, please?

I am wondering:  how difficult or how easy is it to get infected with HIV in a hospital ?

I ask, because I was always petrified when doctors or nurses took my blood
in NHS-hospitals without disinfecting their hands or the skin on my arm
where they eventually placed a needle to take my blood...

For a considerable time now I have had my blood taken in a private laboratory,
where the nurse disinfects her hands and she also disinfects the skin where she places a needle
to take my blood-sample. That makes me feel much safer.

How risky is it for a patient if an HIV+ medic takes blood without disinfecting their own hands
and/or the site where they insert the needle to take the blood ?
Would it be safe enough if they only disinfect the site where they are going to take the blood ?

Is disinfecting good enough or should nurses who take someone’s blood always wear gloves ?

Thanks from Kristina.

[KarenInWA]

Oy. Schools and hospitals can be S.C.A.R.Y.  I have a friend who works in a hospital (administrative - surgical appointment scheduling).  He is HIV+ and I often think that is the last place he should be working with a comprimised immune system.  I'm sure that there are lots of medical professionals in his situation,  but still ..hospitals .... YIKES.  Full of sick people.  Ha Ha.

Hello, Todd, thanks for mentioning this. May I ask you a question, please?

I am wondering:  how difficult or how easy is it to get infected with HIV in a hospital ?

I ask, because I was always petrified when doctors or nurses took my blood
in NHS-hospitals without disinfecting their hands or the skin on my arm
where they eventually placed a needle to take my blood...

For a considerable time now I have had my blood taken in a private laboratory,
where the nurse disinfects her hands and she also disinfects the skin where she places a needle
to take my blood-sample. That makes me feel much safer.

How risky is it for a patient if an HIV+ medic takes blood without disinfecting their own hands
and/or the site where they insert the needle to take the blood ?
Would it be safe enough if they only disinfect the site where they are going to take the blood ?

Is disinfecting good enough or should nurses who take someone’s blood always wear gloves ?

Thanks from Kristina.

Kristina, where I live (Seattle area of U.S.) fresh gloves are *always* used when taking my blood, no matter where I get my blood drawn.  Also, when I was in the hospital for my transplant, anytime a nurse did *any*thing with me, they always put on a fresh pair of gloves. Same with the dialysis clinic. In fact, at dialysis, if a tech/nurse had to be interrupted for *any* reason while tending to me, new gloves were always put on. Even if it was just for a second. So here, at least, it would be very difficult for HIV to be transmitted to a patient, unless some awful accident occured!

KarenInWA

[ToddB0130]

Kristina --- In brining up my HIV+ friend who works at a hospital .... I was talking much more about the risk to HIM (with a compromised immune system) ............. I hope you have a chance to talk about any concerns you might have with someone with more knowledge than me (or even online where there is plenty of information).   The HIV virus is spread in very specific ways with relation to fluid transfer (as far as I know it is blood borne primarily).   It is not something that you can breathe or get from touching someone or being touched by someone infected.  (just like kidney disease is not contagious).   Most medical professionals take great care to insure that BOTH they are their patients are protected.  I am shocked that any medical professional does not wear gloves when appropriate.    Anyway --- bottom line,  basically unless the other person's blood comes in contact with you and enters your own bloodstream,  you are not at risk.  In the distant past,  there have been cases of transfusion related cases of exposure,  but they do better with testing donated blood now.

Bottom line --- it's 2012 and there's plenty of information out there for you to determinse what would put you at risk if you're really concerned about HIV exposure.  Take the time to educate yourself.  When I said that hospitals are full of sick people .... I think there are other things you're much more likely to be exposed to

[kristina]

Thanks very much, Karen and Todd,
your comments are food for thought
and very much appreciated.

Thanks again from Kristina.

[rsudock]

With my first transplant I was working as a teacher and I was around MRSA, swine flu, and sick/germie kiddos all the time....I never picked up anything they had. I would make a conscious effort to have the kids clean their desk with soap and water, open windows to air out my classroom, wash my hands constantly, and stay hydrated. This second transplant I am having more difficulties with getting things so far CMV and the flu (I think). I work at a hospital but not in a ton of patient rooms...so I have no idea....I think many folks that end up getting some sort of blood infection/bacteria is what tends to put your life in jeopardy...so before transplant go to the dentist and after transplant try not to get cuts, piercings, anything that would cause you to have a wound that could get infected.

I don't really know about the age thing though sorry.

xo,
R

[Krisna]

I've had 4 transplants.  I started in 1980 so they were spread out over the yrs.  I had 3 younger sisters at home.  I was told that my body was used to them so it was okay.  But at the same time if I got sick I had to call my doctor and let him/her know.  Then I had to keep track of my temperature.  If it got above 100 and didn't come down with meds then I had to call my Nephrologist immediately.  I was young so I was able to fight things off more easily.  But if I got the flu I would have to go to the ER so they could keep an eye on me.  It was the same with my first 2 transplants.

With the last 2 I didn't live with any kids so I had to stay away from them for abt 6 wks or so.  Then I had to be careful to not be around them if they were sick.  After that my family just let me know when any of them were sick so that I could stay away.  You are going to get sick no matter what.  But as long as you take steps to keep it under control it doesn't mean you will die.  I would always end up in the hospital when I got the flu growing up.  I was thrilled when they came out with the shot and I get it every single yr. 

So, if the kids already live with you then you should be fine.  Use hand sanitizer when you can't get to a sink to wash your hands.  I carry a small bottle with me everywhere.  And I never use my hand to cover my mouth when coughing or sneezing. 

I had my first kidney for 8 & 1/2 yrs and I got the flu every single yr and colds several times a yr.  Yes, sometimes I wound up in the hospital but I made it through just fine! 

I know someone who had a transplant and did die because she got sick.  So, it can happen.  But she was running an extremely high fever and refused to call her doctor!  If she had called her doc would've admitted her to the hospital and she would probably still be here!

[Krisna]

With my first transplant I was working as a teacher and I was around MRSA, swine flu, and sick/germie kiddos all the time....I never picked up anything they had. I would make a conscious effort to have the kids clean their desk with soap and water, open windows to air out my classroom, wash my hands constantly, and stay hydrated. This second transplant I am having more difficulties with getting things so far CMV and the flu (I think). I work at a hospital but not in a ton of patient rooms...so I have no idea....I think many folks that end up getting some sort of blood infection/bacteria is what tends to put your life in jeopardy...so before transplant go to the dentist and after transplant try not to get cuts, piercings, anything that would cause you to have a wound that could get infected.

I don't really know about the age thing though sorry.

xo,
R

I remember having to ask my doctor for permission to get my ears pierced when I was 14.  I was still on my first transplant.  She said yes, but told me the importance of keeping them clean until they healed.  I still clean my piercings and earrings with alcohol before putting earrings in.

And my transplant clinic requires a dental visit before they let you have the transplant or put you on the list.