are you a transplant recipient?

[aharris2]

or are you on a transplant list? then these questions are for you...

how free are you to travel? do you have to be glued to your phone at home 24 hrs a day 7 days a week? or can you take a vacation and find out how are you fairing on the list? can you work? ok that's all i can think of right now... thanks guys!

Rolando

 


EDITED: Thread moved to proper section: "Transplant Stories" - Bajanne,Moderator

[Bajanne]

I won't be able to help - only on Hemo - but I do hope those who can will answer your questions.  These are some questions I myself would love to have answered.

[Laurie]

Here is my attempt to answer your questions. I am on the transplant list.

Yes, I can still travel. They prefer I stay close so that I can get to the hospital within 2 hours. I just have to let my coordinator know when and where I am going.

No, I don't have to be glued to my home phone. I usually carry my cell phone with me and I gave my coordinator a list of phone numbers for my family because they usually know where I will be and how to get in touch with me.

I don't think you can find out where you are on the list, but I'm not sure about that.

Yes, you can work. I still work fulltime. I am still pre-dialysis but will be starting very soon. I also plan to work fulltime once I start dialysis.

I hope this helps 

[livecam]

or are you on a transplant list? then these questions are for you...

how free are you to travel? do you have to be glued to your phone at home 24 hrs a day 7 days a week? or can you take a vacation and find out how are you fairing on the list? can you work? ok that's all i can think of right now... thanks guys!

Rolando

 


EDITED: Thread moved to proper section: "Transplant Stories" - Bajanne,Moderator

Here goes Ro.  I'm a recipient of almost 6 years.  At this time I can go anywhere I want with no restrictions.

We traveled when I was on dialysis without being glued to the phone.  These days you can be contacted most anywhere in the world by cellphone or you can leave contact information with the transplant center while you are away.  You are limited by the need for dialysis so for a person on hemo you would be either doing short trips with dialysis in your home unit or for longer trips you would arrange dialysis at a different center.  For those on PD supplies are shipped to your destination before you arrive there.

A kidney can be stored outside of the donor's body for a period of time so if the call comes while you are away there is a good chance you could get back for a transplant even from the other side of the world.

I worked during my dialysis days taking 3 months off for the transplant and recovery before coming back.

[Jill D.]

I am a transplant recipient - my surgery was Dec. 6, 2006. I laid low for 2 months - didn't go out much at all, mostly just labs. I didn't want to expose myself to alot of germs since I had the heaviest doses of immunosuppresants during that time. I started back at work in Feb, but only a couple of hours a day, then worked up to more. In April I was back to full time, and for the last month I have been putting in 50 - 60 hours a week.
I believe being extremely careful in the early months is very important. It is hard, because friends wanted to stop by, bring food, etc. but I made it clear that I preferred to make my own food and didn't want "company" for the first two months (there is always the phone and the internet!). It paid off because I have not had a single setback since my surgery. I am now back to a more "normal" life, but I will always be diligent about hand washing and food prep and storage.

[waitlisted]

Before I got on the list I was concerned about the travelling, I did not want to be glued to my home for next 5? years. After I got to the list I made the decision  that I will not stop travelling. I am still in pre-dialysis phase. The coordinator told me just to let her know when I will be out of town. My cell phone is my contact number and that works basically almost all around the word. I only let them know if I leave the country, because hen I would probably not be able return to hospital fast enough.

I guess I could keep myself on the list also during international travel and in case they would call me, I would just let them know that I cannot do it. However I think that if I would get the call while being abroad I would feel bad for travelling and missing my chance, so I decided not to take that risk.

[okarol]

Jenna's transplant hospital gave us a pager. It went off twice due to wrong numbers calling. We didn't travel except for 4 day weekend trips, never more than 2 hours from home. She did not work, but since starting dialysis at 18 years old, she was still in high school and was overwhelmed. Jenna got called twice, once as 6th back up and once as 1st back up. However, she ended up getting a living donor so we were able to plan the date.

[keefer51]

Ro, I am on the transplant list. My first transplant was a living donor so this process is different for me. According to my transplant coordinator i can travel almost anywhere. I go to a Fresenius center. i have a friend that just got back from Hawaii and he had no problem. I do have two phones. A land line and a cell. The cell is with me always. Because i sleep so heavy i am sometimes scared i would miss the call. I have asked three times in two years where i am on the list but was told they couldn't tell me. I was told by the transplant doctor it would be at least five years. I guess i have two left. This time on dialysis i don't work. I am too tired to even try. I did however the first time but i was a little younger too. I do go to the beach in September around my birthday every year but i only go for a few days. Because i am on the M-F shift it is easy to do. One year i went to dialysis on Friday early shift 6:30-10:30am then left for the beach right after. It takes two hours to get there but i did it. I was able to stay till Monday and go to the late shift 3:30-7:30.

[KT0930]

My first two transplants were living related, so this is a COMPLETELY different feeling for me...one I don't like, btw! Anyway, I don't have a land line, but my cell is by my side 24/7. I am planning a trip to Disney World in September, with contingent plans that if I have to jump on a plane at a moment's notice, we have a credit card available just for that (unlikely, but never too careful). I also work full-time, and my boss is aware that when the call comes, I have to leave NOW. We have trained a few people in the office to do my job for when that happens.

I've never tried to find out where I am on the list, my understanding is that it's not "oh, you're number 2 and so you'll be next". It's done based on medical need and time on the list as well as other factors, so it's really too complicated for them to give you a quote. Done more like a database search, I believe.

[Romona]

I was only on the list for 6 weeks. I had read all the statistics and averages and thought that my wait would be years. When the call came I was in complete shock. The coordinator that called said the it was a very good match. I believe they take into account not only blood type, but antibodies as well. I had received both kidneys of a small child that grew into 1. I was told because I was a small woman 5ft 2 that was a factor in matching us. There are so many things that are taken into account. Try to relax and enjoy life. I was a nervous wreck waiting for the call the first two weeks, but decided to just let "What ever is meant to be" be my motto.  You may not be high on the list but if you and the donor are a match and a it looks like a good outcome you'll be moved up. Good Luck!

[angela515]

When I was on the list I was free to travel.. I just had to let the transplant team know so they knew if one came along if I was close enough ot get back in time for it. They had all my phone numbers, all family's cell phone numbers....and now that I am a recipient I just have my blood levels drawn before and after my trips.

[okarol]

I was only on the list for 6 weeks. I had read all the statistics and averages and thought that my wait would be years. When the call came I was in complete shock. The coordinator that called said the it was a very good match. I believe they take into account not only blood type, but antibodies as well. I had received both kidneys of a small child that grew into 1. I was told because I was a small woman 5ft 2 that was a factor in matching us. There are so many things that are taken into account. Try to relax and enjoy life. I was a nervous wreck waiting for the call the first two weeks, but decided to just let "What ever is meant to be" be my motto.  You may not be high on the list but if you and the donor are a match and a it looks like a good outcome you'll be moved up. Good Luck!

Hey, I had heard of "2 kidneys from a child" transplants, but never knew anyoine that got one! And such a short wait too -- that is amazing - best of luck to you!

[lola]

RICO, the first time Otto was on the list he went to South America for a week and now this time around we are going to Vegas. We try to live as "normal" as possible, our coordinator has every # possible to get ahold of us for when we get the call. As for work, well he still works his 2 jobs he says he needs to keep everything the same in his life or he might lay on the couch and never want to get up again.

[Romona]

Hi Okarol, I was just as amazed as anyone. They were the size if two small lollipops. When I had an ultra sound approx. 4 months later for something unrelated to the transplant, they had grown to almost full size. With in two days of my transplant my creatin went from 3.2 to 1.6. I am stable now at 1.1. I love reading everyones posts. I am hoping to start a support group soon. The nearest one to me is about a an hour and half away. I have been trying to talk to more people and their families about kidney disease. I am really so inspired. I am really nervous about taking on something like this, but as I talk to more people, I know this is the right thing to do.

I want to honor my donor by doing something to help others.

[MyssAnne]

I'm in the process of filling out my papers. I've been nervous about doing it, because of the expense incurred, and the possibility of the coverage being dropped after 3 years. I'm not on disability yet, or ever, for that matter, so that may not be a problem.  I did not realize the cihldren's kidneys grew! Wow! I'm glad they worked so well for you, Romona! Between you and Karol, we're getting quite a bit of info!

[angela515]

I'm in the process of filling out my papers. I've been nervous about doing it, because of the expense incurred, and the possibility of the coverage being dropped after 3 years.

Most people find a job with insurance coverage long before their 3 years is up... and now a days if you dont have that, there is people out there willing to help get you coverage or pay for your immunosupressives.. however, its best to know your covered forever before you get the transplant... I have had mine for 7 months now, and I plan on going back to work the begining of next year when I have a drivers license and a car, however if for some reason my plans didnt work out and it got pushed back further, I would make the necessary move to the city and near a bus line to be able to get a job, and also start talking to my social worker about options in paying for my drugs if 3 years come and im not working yet.

All in all, im just saying, dont let that weigh your decision for transplantion down.

[Romona]

Myss Anne, Im lucky that my husband and I both have insurance. But it doesn't cover it all. I have co-pays. I have medical bills out the wazoo.
I'm like the guy on TV that says I'm in debt up to my eyeballs. I try not to worry about it and pay down as much as I can.
So many people are in the same boat. I had this crazy idea that I would be able to pay down bills and save money before the transplant. We were set back fiancially the year before when I had four stays in the hospital in two months. I was finally caught up and paying ahead when I had the transplant.
I just like to think of myself as job security for collections departments. They have families too!

[MyssAnne]

Angela and Romona,  thanks, ladies, for your honest input! I have to admit, this is what has kept me from filling  out the papers and doing the necessary 'stuff' to get on the list.  In a way, not being on disability is good, I can't get kicked off, if I'm not on, right??

[highlite36]

You know, money will always be an issue as a sick patient.  I always said that I'd be a RICH woman if I got a penny for every single time that I was sick....  :-)  I often wonder what I'm going to do for the rest of my life.  How will I afford a house, children..... 

[angela515]

Money sucks... when your sick. You just have to look at the big picture... Like for myself... I would rather owe millions to bill collectors and feel healthy and normal than chooser to stay on dialysis and not at least try. Ya know? I just wish our giverment or any goverment for that matter wouldn't be so money hungry and be focused on living a normal life.