New to forum, Is this the right place to introduce myself?

[Matt1978]

Hi,

I have polycystic kidney disease and am currently attempting to arrange a live kidney donation.

Is this the right place to unload all of my thoughts? Questions? Concerns?

I will put it 'out there' anyway and see if anybody's got anything to say...

Having grown up with separated parents and watching my mother go through 3 divorces, I thought I was quite a hardy kind of bloke. Not much could phase me emotionally and I've always been pretty tough about living with PKD (diagnosed when I was 15, I'm now 32). Then suddenly I find myself emotionally stretched and in possibly the toughest situation of my life so far!

A little over 12 months ago my routine visit to the consultants became more complex than the norm when I was informed that by 2012 I would be requiring dialysis, and to prevent this, a pre-emptive transplant should be considered. Wow, a humbling bit of news if ever there were any! I "tough-guyed" it out for a few months having decided that I love all of my family members and friends too much to consider asking one of them for a kidney, and that I will wait until I'm on dialysis and get on the list for a deceased donor. After about 6 months of this the consultants had a session with me, explaining the difficulties I may experience with dialysis (and my own research started to indicate that this option would certainly not be a walk in the park!), and that a live-donor would be a much better option for me.

My darling fiancé has maintained all along that I could have one of hers but I would love to provide her with children (which we are yet to start on), and we were advised to wait until we had bred until we considered that avenue. Given the timescales involved this rules her out as a potential donor. My father had my older brother and me with my mother, then another two boys with his second wife. My mother also had two more, a boy and a girl with her second husband. Out of all of these siblings, and both of my parents, I am the only one with PKD. So I am that much of an individual that it seems I have developed this condition all by myself, just to be different! My older brother has children of his own now, and runs his own business so I have ruled him out of the equation (even though he is the most likely match due to us having the same parents). Similar situations ruled out my half-brother and sister with my Mum. Leaving the two younger half-brothers I have through my father, the youngest of which is still only 19. The other is 23 and offered without any arm-twisting to undergo the tests to see if he could help me.

Once my father got wind of this proposal he decided against it, worrying for the health of two of his boys would be more effort for him than just worrying about me. I have struggled to come to terms with my situation as a whole, but this seemed like the final blow so I didn't communicate with my father out of anger for a few months. Finally I find the courage to speak to him on the telephone about it and he decides that I shall 'have one of his instead'. He is in his 60s and is quite a bigoted character to say the least, so the offer from my little brother remained the preferable option in my mind.

I'm not sure what I am seeking from putting all of this info on a forum such as this, I guess some encouragement would be nice. Looking at different posts on here, a common theme seems to be lack of understanding from 'normal' people. This is something I experience too. I have deteriorating health, my energy levels are poor, I face decisions which I feel too humble to make, and sweepingly generalised comments from friends and family. Lack of understanding from most people around me. My fiancé does so much for me around the home already just because I find things hard to do, I cannot imagine how this will be once I am actually on dialysis, or recovering from surgery. As with other posts I have read here, I worry about moaning too much about my problems. I rarely discuss much with anyone, the brave face comes on and I tell everyone I'm fine! Truth is, I'm bottling everything up and sometimes feel like I am going to explode.

I work in financial services which is dull and low paid. I have tremendous debts dating back from my gap year and my studies which simply have not gone away, only gotten bigger. I have a loving, amazing girlfriend who agreed to marry me over 3 years ago now, but I cannot afford to get married. We do not own our home, we've been together 5 years but have never had a summer holiday due to finances. She deserves so much more than somebody who is ill and is due to get worse. Is anyone in a similar situation to me that knows of any financial help available to us?

Does anyone know if I should accept the offer from my father, bearing in mind when I am 50 I would have a kidney (which I would be relying on solely) that would be pushing 80 years old??

Anybody been through this and come up smiling the other side?

Anybody know any good jokes?!!!!

[Thumps]

Your story mirrors my own pretty closely - although I was 19 when diagnosed and 34 when I eventually accepted a living donor op. I too have considered myself a pretty self-sufficient person and don't like having to rely on anyone, so the process of allowing someone to give me a kidney was pretty fraught from a mental perspective. Nothing in the world prepares you for what this sort of impending illness does to you.

Finding a donor is a difficult task. Your fiancée sounds very supportive and committed to you, which is great. You do seem to be writing like it's all your decision though; realistically it's actually down to the donor, and if someone wants to give you a kidney, in the end it's best to swallow your "hardy"-ness and accept that generosity with good grace if you can. Tough to do, but so very necessary. Your nephrologist (kidney doctor) can tell you about likelihoods, but there's no reason why your Dad's kidney wouldn't be a good one without going for the tests.

You've also not mentioned friends anywhere - do your friends know about your situation? Has any of them offered? I too am a singular PKD-er in my family, but in the end it was my friends who stepped up to the plate and I had a transplant from an unrelated donor two years ago. Everyone assumed we must be related in some way, incorrectly... it's entirely possible to do a transplant with a not-so-great match now. I was very clear and open with my friends when it came down to it, and several of them offered to go and have the compatibility tests. I guess all I'm saying is if your family situation is complex, then you may have other options.

I can't really say a lot on the benefits front as I've never claimed any, my employer has been hugely supportive throughout which I'm very grateful for.

If it helps at all, three years ago I was at 12% function, barely able to get out of bed in the mornings, trying to do a living donor workup while also looking for a new home closer to the hospital in case I needed dialysis, and hold down a full time job (badly as it turned out) - now I'm 2 years post-tx, healthy and happy and most definitely smiling. It's not all plain sailing by any means but you CAN come out the other side positively!

The only thing I would say is that a transplant isn't a "cure", just another form of renal replacement therapy, and you'll be a kidney patient for life, so that's probably something to try and get used to. I didn't, and it's taken me ages to accept that I'll be reliant on drugs and the skills of the team at my clinic for life. It does promise to be a pretty good life, though.

Good luck and keep in touch! x

[Matt1978]

Hi Thumps,

Thank you for your response. It's great to hear the point of view of somebody who knows my situation. Your words have already helped!

I didn't mention my friends, none of them offered to help when I explained it all to them. In fact, some of them just came straight out with “Well you can’t have one of mine, sorry”. This made me realise that I could not expect anything like this from friends.

I’d like to think that if the shoe were on the other foot then I would consider becoming a donor, but that’s me. I cannot expect others to have the same willingness to help. Especially given our current ages, marriage and pregnancies are abundant in my circle of mates and that sort of planning and commitment obviously takes precedence over the health of mere friends.

I hear what you say about my father’s offer not being a bad one. It’s hard to explain but he isn’t the kind of person who would let it be easy. I imagine plenty of obligation on my part due to his donation. And given that his offer came out of fear for his younger son as opposed to concern for the health of the slightly older one (i.e. he didn’t offer when it was discovered what was required, just once he found out that my younger brother was getting involved), I feel reluctant to accept. But there again, as you said, it’s not really my choice is it? It’s his.

Could I ask; Has your relationship with the friend that donated to you changed at all since? Also, you say that they were not a match. What level of anti-rejection drugs are you on? Has that changed you at all? Physically, or otherwise?

One other thing, where are you? What team look after you? I am based in Bristol and Southmead hospital are my guys, they seem pretty amazing at what they do.

Thanks again for your advice, it’s invaluable to me. I really appreciate it.

[Thumps]

I hear what you say about my father’s offer not being a bad one. It’s hard to explain but he isn’t the kind of person who would let it be easy. I imagine plenty of obligation on my part due to his donation. And given that his offer came out of fear for his younger son as opposed to concern for the health of the slightly older one (i.e. he didn’t offer when it was discovered what was required, just once he found out that my younger brother was getting involved), I feel reluctant to accept. But there again, as you said, it’s not really my choice is it? It’s his.

That's true, but you're also right to be wary about your Dad not "making it easy" for you - that would certainly be a reason for me to think about turning the offer down (I did actually turn down a friend for that reason!). How old is your brother? Has he simply decided to step back because of your Dad's concerns, or is he still willing to help? Sounds like quite a complex situation. If it helps your Dad, the health of donors is usually excellent - in fact they have to be in tip top condition to even be allowed to donate in the first place. Donors don't suffer negatively in lifespan or general health as a result of their donation. I'm sure Southmead can give you leaflets and info on this. Do you have a Living Donor coordinator yet? Do Southmead have any peer support group meetings or similar? Perhaps the three of you meeting with the coordinator or attending a meeting to get more direct info would be a helpful thing to do.

Could I ask; Has your relationship with the friend that donated to you changed at all since? Also, you say that they were not a match. What level of anti-rejection drugs are you on? Has that changed you at all? Physically, or otherwise?

She was a 1-2-1 match I think, which isn't that great. We are much closer as a result of the experience, although strangely I don't really see her that much - it's just an amazing experience to have shared, and it changed her life as much as mine (she's now doing a PHd in Psychology associated with donor and recipient experiences!)

The drug regime is pretty unique to each patient but I don't think anyone here would disagree with me when I say it's a hell of a rollercoaster for the first few months. Side effects can be really quite debilitating and it's quite an emotional ride as well, some of the drugs are quite mood-swingy... not to mention the shock of the op and the changes you make. Being pre-emptive (i.e. transplant before dialysis is needed) meant for me that I kinda missed out on the upswell of joy that some patients who've been dialysing report immediately post-tx, but it has still completely changed my life for the better. I'm fitter and happier than I've been in years, and I appreciate life a lot more now I think.

I'm in London @ Guy's, and they've been fantastic. I hear good things about Southmeads too.

We'll all be about if you want to ask more questions.

[Matt1978]

My brother's 23, and no he hasn't stepped back. I have coordinators here in Bristol. Family are on the south coast and my brother is in the process of arranging meetings for tests with a team down there. The 'Dad development' was literally in the last couple of days so no move on that yet. Obviously it's my brother's decision not my Dad's so if he still wants to keep his offer on the table then that's between him and me. It's just that Dad is so opinionated, he even referred to my specialists as "So-called Specialists" when I spoke to him the other day, believing his "Friends in America" (business associates and fellow day-dreamers) know more about this area of medicince than my dedicated team in Southmead! This is the additional complexicity to the situation, trying to tell a bigot that he doesn't actually know everything about everything!

Southmead run coffee mornings I think, or similar such meetings. At present though, I am feeling good about getting an informed response through this medium, it's nice and 'removed' for me. And I have had the leaflets and DVDs from the coordinators, it's just nice to hear someone's experience first-hand.

Thanks again, I will stick to this forum (which is a first for me), and keep you informed of my progress - please do the same.

Cheers, have a great day x

[Otherstarfish]

Matt, Welcome - this is definitely be the place to be to rant, rave, laugh and mostly share with others your experiences. You will have many, I am sure!
A lot has been said by Thumps, that mirrors my own - so here my thoughts in no particular order.

Don't tough it out - you don't get any points and just waste time. You have a three way choice - Dialysis, donation or something else beginning with D.
Your family will be there for you - all the rest is noise. Let them be bigoted if it helps them. Its going to be, well you know that ride in Alton Towers, which throws you around alot and turns you upside down and generally scares you to pieces - you have started the emotional equivalent of the worlds greatest roller coaster. So buckled down (if you didn't know already). there will be highs as well as lows. I don't know one recipient - donor pair that hasn't wanted at some stage to say stop! However virtually all progress and carry on.

I think people react in one of three ways - either its a "YES, take it now" or a "NO, absolutely not" or its a "noooo... at first then a kind of ok this is important lets do it" - which is where you father falls. The way i would look at is if the situation were reversed would you donate (assuming your manky kidneys were good) to the person you are asking? if you can't say yes then why would they,

In terms of your father or your brother - get them both checked then let the hospital decide which is best for them and you - this isn't a shopping trip for you to choose the best cut. Let the science decide first....it could be one, unbeknown to anyone, has 3 kidneys for example or equally only one - until they are tested you don't know.

Do factor other things in like do they have kids, married etc. For example My sister had a friend volunteer who was a widower with 2 kids, so just from a general if something happens sense then its a NO. Whoever donates to you - your relationship will change. It can't not. Mostly its for the better.

One way to fight bigotry is information and intelligence - go read and learn. I will drop you a pm with some useful links.

Apologies for the ramble.

Cheers

Gary

[pocketwilson]

Hello fella,I am also a unique PKD sufferer and the only offers of donation came from a school friend that I lost touch with for 16 years and my wifes friend whcih really humbled me. The whole experience has made me realise that perhaps I was putting energy into relationships with people that wasn't really returned so i have stoppe doing that and focussed on the inportant relationships. I was lucky enough to recieve a non heartbeating kidney 6 weeks ago, which was a surreal experience and has had me up and down emotionally as I didnt feel that sense of wellbeing immediatley post op. Instead I have gradually felt better and had more energy as the days have passed.

Dialysis while not pleasant isnt all that bad, especialy if you are young and otherwise well. I have done both peritoneal and haemo dialysys and this is a needle phobe speaking here! I would say it is an inconvenience, but you should see a certain amount of energy levels return. Educate yourslef on the different dialysys options available so you are prepared if you need it before you get a tranplant as even pre emptive ones take a while to arrange.

I found that arming myslef with knowledge and controlling what elements you can helps massively.

I know what you mean about normal people not having a clue, one of my oldest friends rang me 2 days post transplant and asked where I was! (he knew i had jsut had the transplant) he then "sympathised" with the amount of blood tests I had (every morning at 6am for 10 days) by saying they had trouble getting blood out of him at the blood donor clinic!

even on the odd occasion I complained i was tired - and i was virtually on my knees when that happened he would always claim to be more tired.

The bottom line for me is to keep the glass half full and stay informed.

[Helen Rambaut]

Hello, this is a good place to post & introduce yourself. I can relate to several aspects of the situation you find yourself in. I am nearly 4 years post tx from my much younger half brother (from my father's 2nd marriage) & I am the eldest of his 6 children and one step daughter. The youngest daughter (3rd marriage) was 12 when my Dad went to be tested. He was 73 years old and passed all the tests. I have posted before about the situation that happened to me so wont go into it all again in this one. Do send me a private post if you'd like more info.

Something which you may like to know re your fiancee. 2 weeks before my op I ran into a woman asking for directions to the medium dependency ward - she was about to give a kidney to her mum. The next week my brother met her post op in the clinic and she was walking stiffly but looked pretty good having been discharged from hospital. About a year ago she came to one of the hospital's transplant seminars with her baby, his father and her mother to talk to patients who hadnt been through the live donor process. I learned yesterday at a meeting that it's patients like her that get potential young women donors making a beeline to speak to her because she gave a kidney before being pregnant. There is a variation in practice between the different renal centres in the UK with regard to living kidney donation. I expect my unit has data on the number of women, under their care, who have given a kidney before having children.

At the meeting yesterday there were 3 pairs of live donor/recipients - all unrelated (one friend & 2 wives), a man whose wife had been the donor, a woman whose husband had been the donor, a woman whose friend had donated. I was the only one who had had a blood relative donor (2/6 match, same blood group). Two of the couples were ABO incompatible. It's amazing what they can do these days.

Helen

[geduramah]

Hi Mat, welcome to the forum!

We can all relate to you in one way or another! I am 30 (only just *cough*) but was diagnosed with PKD when I was very young, approx 9. I had lived my life normally, almost forgot I had the disease until a couple of years ago at my regular neph appointment my doc siad that a my kidneys was functioning below 20% and I should start the work up for a pre-emptive donation. I thought I had been side blindied! I honestly thought I was 'normal' and that my kedneys were ok - in hinesight I should have payed more attention to my results and seen it coming!
I honestly didnt think getting a donor would be so much heartache! My fiancé offered straight away (my dad couldnt coz he has PKD too and already had a successful transplant), unfortunatly we were diffenernt blood groups so couldnt go ahead (there is a possibility for diff blood groups to donate but certain criterea has to be met in which we also failed).My mom offered to donate but there was a risk of her getting diabetes in the future so my neph wouldnt entertain the idea. My point is, whoever offers, they will do extensive tests to ensure that they are tip top health and minimal risk and that you are a match. My neph said that the max age he would accept for me is 55 due to me being young and wanting the best outcome. Someone younger would have a 'prime' kidney and recovery for them would be quicker and easier than that of 50+.
The other point is that offers may come few and far between so take any offer seriously and nurture those offers! Could you ask your neph team to test both your bro and father to see who comes up the best match? It is possible for them to do this in Yorkshire and in their best interests as you will be saving them money in the longrun! At the end of the day your brother is old enough to make this decision for himself?

I am now on peritineal dialysis (since Aug last year). I did have to also look at the possiility of dialysis when I was aksed about pre emptive transplant too. Although its something that you might not want to think about, its important that you prepare for it anyway. If you want any real info on what its like just PM me : ) Its not all doom and gloom and like you felt tired etc... but this has improved since being on PD and controlling my iron levels.

I can totally understant the tick tock of that biological clock! I dont have any children and I do realise im not getting any younger - would love to start a family but obviously cant atm, but look forward to the future! I have to also be realistic, even if I was able to have children now, im in no position to be the mum I would like to be and so im glad to wait.

As for friends, im in the same position as you - they dont understand and so I never bother them with my stuff. I think some even forget that im on dialysis but thats ok - I would rather moan to them that I have a cold rather than kidney failure!

Hope you find some great info on here, ive found this forum a great help and the peeps on here are good listeners : P

[Matt1978]

Wow, So much wisdom in response to my post. Thanks everyone. Thanks Gary, pocketwilson, Helen, Geduramah - I'm not addressing each response individually but a massive thank you for taking the time to boost my confidence.

Your themes are all similar, yes, I must suggest that both my brother and my father get the tests done so the speciallists can decide which option is best. Those post transplant have really made me feel more comfortable with my prospects and those going through dialysis have helped me not to be scared of that too. You guys really are brave, and it all goes relatively un-noticed by the world at large.

I think I may make an effort to discuss my problems in a more open manner when gathering with friends. Try not to rely on my brave face.

I feel I have made friends here! It's weird, I'm not usually one for forums and anonymous friend-making but I have something in common with you all which is a major first for me. I've never met anyone in real life that's been through this sort of thing, and continues to go through it each day.

Keep up the good work everyone! I check this forum in work so am limited to the amount of concentration I can give it, otherwise I do not get much work done! But I will continue to look, and am very interested to hear from you all. Obviously I will keep you posted on my developments too.

Thanks again xx

[geduramah]

I feel I have made friends here! It's weird, I'm not usually one for forums and anonymous friend-making but I have something in common with you all which is a major first for me. I've never met anyone in real life that's been through this sort of thing, and continues to go through it each day.

totally agree there!

I come back on here once every week or so, sometimes just to read how people are doing and if I get time I like to respond, good thing is we dont moan when you havnt visited for a while hehe x