Hey Everyone!
I was directed to this forum by a couple of lovely fellow members and I must say what a great idea - I never knew a place like this existed!
Anyway I am 23 years old, and have been waiting for a kidney for almost 5 years. I spent 3 and a half years on PD, and the past year and a half have been spent on hemo (after PD failed). A couple of months ago a good friend of mine said he would like to give me a kidney and amazingly he was a good match! (I am still in shock - what a miracle!!) Anyway the transplant is set for October 17...less than 4 weeks...eek!!
So I was wondering if I could pick your brains...all I have known for the past few years is dialysis dialysis dialysis - I know NOTHING about transplants. I'd really appriciate any advise anyone could give me...from the smaller things like what on earth do I pack to take to the hospital??? And the rather larger things like what can I expect to be able to do in the weeks following my transplant? How long should I expect to not be able to work for?
Also, in regards to my super-amazing-awesome friend - those of you who had live donor transplants - how did you make your live donor feel as happy and comfortable as possible? Is there anything I should do to make him feel less nervous?
I really appriciate your help, I feel rather in the dark about all this.
Thanks again.
Holly
ps. you can read more about 'my story' on my blog - http://questforakidney.blogspot.com
transplant newbie
Moderator: administrator
transplant newbie
http://questforakidney.blogspot.com
www.hollycocker.com
Received new kidney (kasper) on 17.10.08 from wonderful friend Oli after 5 years on dialysis. I'm 24 and living in London.
www.hollycocker.com
Received new kidney (kasper) on 17.10.08 from wonderful friend Oli after 5 years on dialysis. I'm 24 and living in London.
-
xXx Holz xXx
- Posts: 556
- Joined: Sat Jan 22, 2005 6:29 pm
- Location: Warrington, Cheshire, UK
- Contact:
Hey Holly great to see you posting! I'm sorry I never told you about the KPG earlier!
Obviously I can't help you much as I am in the same boat (I'll be interested to read the replies to this thread)! Just wanted to say welcome and I'm sure there will be lots of people able to answer your questions!
take care
Lv Holly x
Obviously I can't help you much as I am in the same boat (I'll be interested to read the replies to this thread)! Just wanted to say welcome and I'm sure there will be lots of people able to answer your questions!
take care
Lv Holly x
Holly - glad you made it across and welcome ! Hopefully you will find lots of help and support.
You've asked quite a few questions in your post (not suprising considering the immediacy of your tx) and, whilst it might be worth looking through some of the older posts too, here are a few of my thoughts.
Suitcase packing - we all have views on this, but most common tip is to take cordial of your choice with you as you will need to drink LOTS of water post tx to ensure the kidney is working away happily. As a result of that they will also put you on a drip for the first few days at least and you will gain a lot of fluid weight which they like to keep up for the first weeks at least (it can be 8kg or so) - so no tight clothes!!
I also liked having my phone & blackberry to communicate to the outside world (I didn't want lots of people visiting, but loved hearing from them), my i-Pod and also eye shades (hospitals and especially HDU are always well lit).
Post tx - they will try and get you out of bed the day after, and I was mobile once most of the drains were out - quite difficult before then so you need nursing help. Home between 7 - 10 days in a 'normal' tx and I was fine on my own though continually dropped things (like kitchen knives) so appreciated having help fairly constantly for a couple of weeks.
Finally - the back to work thing; my advice would be to have as much time off as you are able. However fantastic you feel, working up your stamina will be an issue and clinics are 2/weekly to start with. I had 3 months off and felt that was about right - around 2 months post tx I felt that maybe I should go back, but Helen had warned me that it was emotionally taxing as well. I also had to change meds from daily clexane injections to warfarin (not the usual treatment) so was glad to have that extra time to get that sorted.
Also as you will see from numerous posts the journey post tx can be challenging - I was warned about the Emotional Roller Coaster by one of the counsellors who just happened to pop in and say hello, and everyone is different, but you should not forget that however 'commonplace' it is now, it is a major op, and almost everyone (some more than others) will have a little hiccup at some stage - which can be very tough especially as you will be unlikely to expect it. The difference these days is that the tx units - are used to it and treat them immediately and effectively so you are in safe hands.
You've asked quite a few questions in your post (not suprising considering the immediacy of your tx) and, whilst it might be worth looking through some of the older posts too, here are a few of my thoughts.
Suitcase packing - we all have views on this, but most common tip is to take cordial of your choice with you as you will need to drink LOTS of water post tx to ensure the kidney is working away happily. As a result of that they will also put you on a drip for the first few days at least and you will gain a lot of fluid weight which they like to keep up for the first weeks at least (it can be 8kg or so) - so no tight clothes!!
I also liked having my phone & blackberry to communicate to the outside world (I didn't want lots of people visiting, but loved hearing from them), my i-Pod and also eye shades (hospitals and especially HDU are always well lit).
Post tx - they will try and get you out of bed the day after, and I was mobile once most of the drains were out - quite difficult before then so you need nursing help. Home between 7 - 10 days in a 'normal' tx and I was fine on my own though continually dropped things (like kitchen knives) so appreciated having help fairly constantly for a couple of weeks.
Finally - the back to work thing; my advice would be to have as much time off as you are able. However fantastic you feel, working up your stamina will be an issue and clinics are 2/weekly to start with. I had 3 months off and felt that was about right - around 2 months post tx I felt that maybe I should go back, but Helen had warned me that it was emotionally taxing as well. I also had to change meds from daily clexane injections to warfarin (not the usual treatment) so was glad to have that extra time to get that sorted.
Also as you will see from numerous posts the journey post tx can be challenging - I was warned about the Emotional Roller Coaster by one of the counsellors who just happened to pop in and say hello, and everyone is different, but you should not forget that however 'commonplace' it is now, it is a major op, and almost everyone (some more than others) will have a little hiccup at some stage - which can be very tough especially as you will be unlikely to expect it. The difference these days is that the tx units - are used to it and treat them immediately and effectively so you are in safe hands.
Hi Mandy!
Thanks so much for your reply - really useful information! Thank you also for your message you sent on Friday - it's great to hear from someone who has gone through this, espicially at the same hospital!
Taking shades is a really good tip - must remember that. Did you feel up to watching dvds or reading after the op? I'm guessing it must have been a few days before you felt alert enough to do this!
I didn't know about the 8kg of fluid they fill you up with - how did this make you feel? Did you feel horribly bloated?
Sorry for bombarding you with questions again!
Holly x
Thanks so much for your reply - really useful information! Thank you also for your message you sent on Friday - it's great to hear from someone who has gone through this, espicially at the same hospital!
Taking shades is a really good tip - must remember that. Did you feel up to watching dvds or reading after the op? I'm guessing it must have been a few days before you felt alert enough to do this!
I didn't know about the 8kg of fluid they fill you up with - how did this make you feel? Did you feel horribly bloated?
Sorry for bombarding you with questions again!
Holly x
http://questforakidney.blogspot.com
www.hollycocker.com
Received new kidney (kasper) on 17.10.08 from wonderful friend Oli after 5 years on dialysis. I'm 24 and living in London.
www.hollycocker.com
Received new kidney (kasper) on 17.10.08 from wonderful friend Oli after 5 years on dialysis. I'm 24 and living in London.
Holly - no problem, that is what the forum is for!
I didn't really feel like watching DVD's or reading much except papers and rubbish magazines, I find that a GA makes my head a bit woolly; also I never find the sleep that great in hospital - in HDU they are always prodding and poking you doing BP,sats and blood tests around 4x daily and of course there are so many other people around. In the other wards it is more the other patients and getting comfortable in a hospital bed! I am a light sleeper so found that my i-Pod and shades allowed me to zone out and rest better. You may be different.
The 8 kg may not be the amount you gain (although that amount is one I have heard from others too) - and no it is not comfortable - you feel like Michelin man - they even give you a towel to support your tummy when you are that bloated - but again, it is that they are trying to ensure that you are not dehydrated in the aftermath as it can be very dangerous for the first few weeks & months.
Your tx kidney has no nerves so rather than working to what you are drinking (getting messages from your brain) you have to drink to what your kidney produces. This is actually quite difficult, especially if you have previously been on a fluid restriction. I had not been but for around a week I was having to drink 6+ litres/day - then it dropped to 4 and now works fairly normally, but keep around 2- 3 and preferrably closer to 3. I found 'solid' food was generally better minimised for the first couple of weeks in favour of soups etc to help the fluid.
You should not drink plain water (as I did) because it literally washes the salts out of your body and I needed a phosphate drip - so milk (think venti latte) , cordial, juices, soups etc are all a good idea.
I didn't really feel like watching DVD's or reading much except papers and rubbish magazines, I find that a GA makes my head a bit woolly; also I never find the sleep that great in hospital - in HDU they are always prodding and poking you doing BP,sats and blood tests around 4x daily and of course there are so many other people around. In the other wards it is more the other patients and getting comfortable in a hospital bed! I am a light sleeper so found that my i-Pod and shades allowed me to zone out and rest better. You may be different.
The 8 kg may not be the amount you gain (although that amount is one I have heard from others too) - and no it is not comfortable - you feel like Michelin man - they even give you a towel to support your tummy when you are that bloated - but again, it is that they are trying to ensure that you are not dehydrated in the aftermath as it can be very dangerous for the first few weeks & months.
Your tx kidney has no nerves so rather than working to what you are drinking (getting messages from your brain) you have to drink to what your kidney produces. This is actually quite difficult, especially if you have previously been on a fluid restriction. I had not been but for around a week I was having to drink 6+ litres/day - then it dropped to 4 and now works fairly normally, but keep around 2- 3 and preferrably closer to 3. I found 'solid' food was generally better minimised for the first couple of weeks in favour of soups etc to help the fluid.
You should not drink plain water (as I did) because it literally washes the salts out of your body and I needed a phosphate drip - so milk (think venti latte) , cordial, juices, soups etc are all a good idea.
-
Blind Terry
- Posts: 51
- Joined: Fri Jan 04, 2008 8:40 pm
- Location: The home of Robin Hood
hi holly,
can't help on the live donor question (Big Buzzard is your man
)
I detailed what happened right from the call to getting better on my blog
iheartgeography.blogspot.com
Read it from the February entry to get chronological order.
It's very graphic and quite emotional reading back now...I wrote it because I was not expecting to happen what actually happened, and at the time I was really quite traumatized by the events of the 10 days following my transplant. At one point I even wanted to give the kidney back as I couldn't take the emotional and physical pain I was in... then I came here and realized everyone goes through it to varying degrees depending on actual progress. I've kind of stopped writing on it now as it was more a cathartic process I needed to go through to deal with the events in my head.
Every single person I know who has had a kidney transplant has had a different experience, from people who sail right through, people like myself who have more emotional than actual problems, right down to people whose kidney never started working properly.
So you need to be pretty prepared for anything, but also keep a realistic perspective- I was convinced my kidney was about to pack in any second, and even though I knew that in reality 95% of kidneys work, I couldn't accept even those odds and was sure that I was in that 5% of people whose wasn't going to work. Anyway, things are great now!
Don't worry at first about not knowing what all the meds are for. You basically have to submit yourself to the care of others, and not being able to do stuff like washing yourself was horribly frustrating for me and a source of my anxiety, and I wish I had taken it a bit easier now in retrospect.
I'd agree with everyone about the packing, but also
*nightie not PJs - you'll be peeing a lot and the PJs will rest on the staples- ouch!
* Have a wax down there!! My donor was a cadaver and I wasn't prepared in time (and it was the last thing on my mind), but hell I wish I had had this done before as the scar is on the bikini line and having dressings changed and docs ripping it off twice a day- yikes
can't help on the live donor question (Big Buzzard is your man
)I detailed what happened right from the call to getting better on my blog
iheartgeography.blogspot.com
Read it from the February entry to get chronological order.
It's very graphic and quite emotional reading back now...I wrote it because I was not expecting to happen what actually happened, and at the time I was really quite traumatized by the events of the 10 days following my transplant. At one point I even wanted to give the kidney back as I couldn't take the emotional and physical pain I was in... then I came here and realized everyone goes through it to varying degrees depending on actual progress. I've kind of stopped writing on it now as it was more a cathartic process I needed to go through to deal with the events in my head.
Every single person I know who has had a kidney transplant has had a different experience, from people who sail right through, people like myself who have more emotional than actual problems, right down to people whose kidney never started working properly.
So you need to be pretty prepared for anything, but also keep a realistic perspective- I was convinced my kidney was about to pack in any second, and even though I knew that in reality 95% of kidneys work, I couldn't accept even those odds and was sure that I was in that 5% of people whose wasn't going to work. Anyway, things are great now!
Don't worry at first about not knowing what all the meds are for. You basically have to submit yourself to the care of others, and not being able to do stuff like washing yourself was horribly frustrating for me and a source of my anxiety, and I wish I had taken it a bit easier now in retrospect.
I'd agree with everyone about the packing, but also
*nightie not PJs - you'll be peeing a lot and the PJs will rest on the staples- ouch!
* Have a wax down there!! My donor was a cadaver and I wasn't prepared in time (and it was the last thing on my mind), but hell I wish I had had this done before as the scar is on the bikini line and having dressings changed and docs ripping it off twice a day- yikes
-
bigbuzzard
- Posts: 1481
- Joined: Sun Mar 12, 2006 11:21 am
- Location: Devon, UK
- Contact:
Hey Holly
Congrats to you and O - great to hear your story, especially on a day when the press (page 15, Monday's Metro) is yet again claiming without thinking that 'it's really rare for people who aren't in the same family to be compatible' enough to be living donors.
I was lucky to only spend a year and a half on dialysis before my transplant last year. But the a week after the operation I felt 20 years younger! From reading your blog I see that would make you a toddler again!
I need to get some sleep, so I can't write too much now, but if you'd like to read my no-holds-barred diary of my transplant week, take a look at my blog.
As for reassuring your donor, I'd be happy to put him in touch with my donor who'd be glad to talk to him about it all if you like.
Congrats to you and O - great to hear your story, especially on a day when the press (page 15, Monday's Metro) is yet again claiming without thinking that 'it's really rare for people who aren't in the same family to be compatible' enough to be living donors.
I was lucky to only spend a year and a half on dialysis before my transplant last year. But the a week after the operation I felt 20 years younger! From reading your blog I see that would make you a toddler again!
I need to get some sleep, so I can't write too much now, but if you'd like to read my no-holds-barred diary of my transplant week, take a look at my blog.
As for reassuring your donor, I'd be happy to put him in touch with my donor who'd be glad to talk to him about it all if you like.
Hi to everyone that sent me messages
Thank you so much for your helpful advice - I so appreciate every little bit, as I am sure you've guessed I am in a bit of a panic about the whole thing but I feel so much better now that I have heard from you guys.
Jen and Bigbuzzard - reading your blogs was awesome, they are both really detailed and helped me understand a lot more of what will happen and what to expect. I read them both in one go - absolutely fascinated!
I will keep you all updated on my goings on!
xxx
Thank you so much for your helpful advice - I so appreciate every little bit, as I am sure you've guessed I am in a bit of a panic about the whole thing but I feel so much better now that I have heard from you guys.
Jen and Bigbuzzard - reading your blogs was awesome, they are both really detailed and helped me understand a lot more of what will happen and what to expect. I read them both in one go - absolutely fascinated!
I will keep you all updated on my goings on!
xxx
http://questforakidney.blogspot.com
www.hollycocker.com
Received new kidney (kasper) on 17.10.08 from wonderful friend Oli after 5 years on dialysis. I'm 24 and living in London.
www.hollycocker.com
Received new kidney (kasper) on 17.10.08 from wonderful friend Oli after 5 years on dialysis. I'm 24 and living in London.
-
xXx Holz xXx
- Posts: 556
- Joined: Sat Jan 22, 2005 6:29 pm
- Location: Warrington, Cheshire, UK
- Contact: