Being a Donor

[moggz101]

Hi Bigbuzzard,

Thanks for your reply! The crash landing scenario seems very common among renal patients - I'm not sure if it's because men are more stubborn about visiting the doctor I also agree about the NHS - on a few occasions my partner has been given information from one of the nurses, and I've sent him back to clarify things that have adverted a few disasters! The PD team are used to me now - I think they see me coming and groan!! I am lucky in the respect that my job means I work along side a few medics that are fantastic about giving me advice, and loading me with the best questions to ask to make sure we understand everything that is going on.

The paired donation scheme has been briefly mentioned, and if we aren't a match, it's something I would like to consider, and I think my partner would prefer - giving the donation anonymity takes away some of his guilt as well. Your HLA match for your first donation also gives me some hope, that maybe there is a little more chance of us being a match (Fingers crossed)

Congratulations on your second transplant, and good luck having the tube out - I'm sure your not going to miss it I hope you get a lot of years before you need it back - I will PM you if I have any queries I can pass your way - thank you for the offer

Morag

[moggz101]

Morag.

Fluid retention can be caused by the blood pressure mess he is on. All my time on PD my BP never went below 150/100 even as meds were increased. Staying on top of fluid restrictions can be difficult and PD doesn't help if he is an absorber of fluid during dwells. (all problems I had)

This is something that never occurred to me...thank you. We have his quarterly Doctors review next month, and this will be top of the agenda!! He is on a high dose of BP tablets - 10mg of ramapril and 10mg of amlodipine and 5mg bisoprolol. His BP is quite stable at 120/60 though. The only think he doesn't seem to absorb is the extraneal - if the green is in any longer than 5 hrs, it's a battle to get the fluid back off him for a few days...and if he goes over his fluid allowance - it's game over

[rheaybou]

Morag

10mg of amlodipine....that's the one that can help retain fluid. I never absorbed any of the day dwell (2lts extraneal). If fluid retention is a problem then ask for more green bags. I would do a Wednesday and Sunday on green bags overnight. That really helps if sometimes you want to be a little naughty with the fluid!

[mnm2010]

Hi Morag,

I successfully donated to my brother 8 months ago. I've not noticed if you said this in any of the previous posts, but are you your partners only volunteer? They will almost always take family over unrelated, so that is the first thing to think about. You may instantly be relegated to a back-up option.

It will also be drawn out. Our scenario was pretty straight forward compared to some of the stories I've read on here. I was first pick, was a good match and got through all the tests. But that still took around 9 months. And I think others that have been through this will agree that's a pretty good run. We had one 'hiccup' when they discovered I had a very small stone (the term the surgeon used was 'fleck') in my left kidney, which is the usual kidney of choice, which slightly complicated things. I needed an additional scan to check I hadn't been damaged by the stone, and that I wasn't still actively producing them, so that probably added another couple of months. That experience did make us realise that there are most things they can get fix though. What actually happened was during the op, the kidney came out, they then operated on the kidney to remove the stone, then they put the new and improved kidney in to my brother - problem solved!

My advice at this stage is to have a pad to write questions down and take them with you to the appointments with the medical staff. You'll be taking a lot of information onboard to start with and you'll inevitably forget all the questions you had the instant they ask you. I quickly learnt to keep my pad by the bed as it was inevitably when I was just dozing off at night that something would pop in to my head!

I hope it all goes well, and I'm more than happy to share my experiences with you as you hopefully progress.

Take care.
Mark

[smudge]

Hi Morag

I donated to my best friend nearly 4 years ago. The testing process was relatively straightforward & if you've read Gary's posts you'll have seen some of my experiences shared there (I think! ). Very happy to answer any questions you have either publically or feel free to private message me. I would do it again if I could. My recipient has had rejection twice & I won't lie - that was hard to watch - though I think it would have been hard whether or not I'd donated or not.

All the best

[moggz101]

Hi mnm2010,

Thank you for your advice - up until now I've just been mulling things over, but now he's getting closer to being on the list, it's seems like a good tie for us to be making lists of questions. Maybe putting a pad in my bag so when I'm at work I can make notes. I find it very reassuring that there seems to be a way around most problems that are encountered during the testing process.

Thank you for sharing your experiences - and I'm glad you had a positive outcome donating to your brother!!

Morag

[MatthewC]

Hi Morag

Good to see your post. I'm a potential donor for my brother and I've been lurking here for some time - this is my first post. I went through all the tests in a hurry last year and was quite surprised to find that I passed everything and moreover we're a perfect match. However, it has all gone on hold now as his eGFR is still hovering above the maximum at which they would do a transplant. At my age (almost 61) I am worried that I might not be so well when I get re-tested (whenever that is).

My advice about the testing is that you need to know what is required and (to an extent) drive things through yourself. I have a theory that, being a volunteer, they are never going to push you and so you effectively keep re-volunteering through the process every time you ask "what next?". Possibly because of this approach I did all the tests in about 15 weeks last year, which seems to be remarkably quick judging by other people's experiences.

I too have a blog (http://diaryofakidneydonor.blogspot.co.uk/) but as I don't live with (or near) my brother, it's all about the donor side of things rather than living with the patient. Keep posting!

Matthew

[moggz101]

Hi Matthew,

Thank you for your reply...I'm also happy I encouraged you to give your first post ! Your advice is sound as well - the renal department are a bit slow at getting anything sorted. When he was referred to the liver team for a biopsy, we asked the renal team in the lead up if they had heard or knew what was happening - their reply was 'No...we didn't know you were having a biopsy...but when you do know whats happening, can you let us know too...' - It was them that referred him!! I think the transplant team might be the same as well, so I will be persistent with them for the initial typing testing.

I'm happy to hear your brothers eGFR is still holding strong - will they continue to monitor you every so often until your brother needs the transplant, or will they leave it now until the time comes and then re-test?

Thank you for the link to your blog - it'll be useful to read your experiences up until now!

Morag

[MatthewC]

I'm happy to hear your brothers eGFR is still holding strong - will they continue to monitor you every so often until your brother needs the transplant, or will they leave it now until the time comes and then re-test?

I think they are leaving any re-test on me and waiting to see what his eGFR does. He went from mid twenties to 17 or 18 a year ago, touched 16 and was at 19 on his last test. It's inevitable that it will drop past 15 but this might take some time, they say.

[Rachael Turner]

Hi Morag
Don't know if it's any help, but I received my new kidney from my hubby on April 30th last year. He was a 1-1-1 match, so we were really lucky. I knew I had kidney failure from 2004 when I was pregnant with my daughter, however, in Dec 2011 my kidney function went really bad, and by April 2012 we were booked in for him to donate his kidney.
I was worried for him, and for our daughter, but he has never regretted a moment of it. I know I am lucky, but it's not to say it can't happen to other people. Up until now been really well, had an infection which transpired into sceptacemia just after Christmas, but on the whole we are, as a family, really good.
When I looked for donors, I went onto facebook, asked friends, family, and put it on the work noticeboard.
I do hope everything works out for you both.

[rheaybou]

My Donor has just returned his 24hrs heart monitor after his scare just before going under. The nurse said that nothing looked out of 'the normal' so when the doc reviews it Monday we may get a new date.

Its amazing what a donor will do for you! His family life is on hold while we wait for him to donate. His partner is fully supportive and his kids think he is Superman for helping to 'fix' me.

Once this is over I am going to help do all I can to highlight what these donors do. They give a kidney.....but also free up a deceased kidney for people not so fortunate(lucky) to have a living match for whatever reasons.

[jan4alan]

Thats right. Those of us waiting for a cadaver donor are truly grateful to all live donors. Fantastic people!

[moggz101]

Hi Rachael,

Thank you for sharing your story! We have discussed it a lot together in the past few days, and he's not 100% happy with me being tested, but if the shoe was on the other foot, I would feel the same as him, and he be the one determined to be tested! We gave up waiting for the transplant team to contact him, so he rang them on Thursday (turns out the unit haven't been keeping them update about his weight progress as they promised us). They are coming down to meet us at his next outpatients appointment on Monday to start his work up, and to talk to him about the option of living donation, so it hopefully won't be long before I find out if I am a suitable match or not. I have few friends who think I'm bonkers for even considering it, but until you are in this situation I don't think you can really appreciate what it would mean to both of us if I was a match. We have a strong relationship, and regardless to the outcome of testing, we face whatever challenges together. I'm really happy that you and your husbands story is ending well! Your husband has given you a wonderful gift, and I'm sure he also feels the same for you allowing him to give you it!

Rheaybou - I've been following your development's in your thread. I'm glad to see you've been given your new date for donation. I bet Monday can't come soon enough for you. I understand the feelings of your donor. I don't know what it's like to have kidney failure, to do dialysis, be poked and prodded by the nurses, or what it's like 'living on the transplant list'. But I do know what it's like to watch somebody else you care about go through it all and wanting desperately to make it different, or even a little better for them. It seems like the biggest priority in life. I'll be thinking about you both on Monday!!!

[rheaybou]

Moggz.

You are right, its not you suffering but you live every good and bad day with your partner. Its a long road to discovering if you can donate and I hope you are looked after better than we were initially.

Now we couldn't ask for any more from the team, they through it maybe twice a week!

[MatthewC]

I was told last week that my brother's eGFR has fallen to 15% and today he saw his consultant for a "routine" appointment. It was anything but "routine" - they are now putting us on the list for an operation in three months' time (which seems to be their normal forward plan). So, it'll be some repeat tests for me plus fill in a few gaps (like the HTA interview that I've not had!). Although I've had over a year to get used to the idea since volunteering, even thinking of the impending reality of it has made my heart rate increase.

Now I have to do six months' work in my garden (= building site) in just three months.