Transplant Tales -BBC2

[Miss-A-V-P]

Anyone watch the Transplant Tales on BBC2? Really made me appreciate how lucky we are. I cried throughout the 2 part series.

[Mgt8]

Thanks for posting this...

Have just watched both episodes...

Well worth seeing.

[manbreak]

I watched the first one I did find it uplifting but also very sad........for me it made realise Im not alone Im neally at the end of waiting to see if I can have my 3rd kidney this last one is just over 26yrs old how lucky am I, these last few week of not knowing have been very stressful and frustrating think its the not knowing is the hardest im trying to prepare myself for the outcome to be dialysis but its so hard........

[Miss-A-V-P in reply to manbreak]

You hit the nail on the head 'we're not alone'. I know it's hard for loved ones to see us having so many highs and lows, but we are the patients and I always feel it takes a different toll on us. Emotionally and physically. Really hoping all goes well for you. I know it's easy for me to say, but remain positive. Feel free to talk, if I can help in any way (small or big), I'll do so. 26 years is a tremendous achievement. If I'm not asking too many questions (sorry if I am), but are you currently on the transplant waiting list? You've clearly got a strong mind to go through 2 transplants.

[manbreak]

Yes Im on the transplant list and my husband is in the shared pool donation scheme we are giving it our best shot to get me another transplant before dialysis I know how lucky Ive been my eGFR is 11 now. I want to get another transplant as Ive never had a problem with this one its just come to the end of its life I led a healthy active full life until the begining of this year the thought of being stuck on dialysis is overwhelming but I will just have to get on with it........

[Miss-A-V-P in reply to manbreak]

Wishing you all the best, hopefully a suitable donor becomes available. X

[Bigdeb62 in reply to manbreak]

Hi there. I'm in a very similar situation to yourself. I have had my transplant 22 years and in March this year it started to reject. My consultant has done everything possible to try and save it but it's not looking good as my eGFR ranges between 11 and 13. Hence a couple of weeks ago I had a fistula done in preparation for dialysis. I have found it extremely difficult to accept with a feeling of been there done that and not sure whether I want to do it again ...........

I really do hope you get the news you're hoping for

X

[manbreak]

I dont think people understand how hard it is when you have had a kidney for so long to get your head around going back to dialysis for me it has always been my biggest dread but because I ve already have 2 transplant Ive had people say things like "oh well youve had all this before" for me im just as upset and frightened as I was the first time around this time I over 30yrs older..........

[Miss-A-V-P]

I think it's easy for people to give words of support without them really understanding how deep the fear runs and all those questions that go through a transplant patients mind.

When I was younger the NHS provided a lot of counselling to help us come to terms with our new lifestyle and embrace the fact that 'different' could still be part of normal society. (granted that was a long time ago but as a teenager taking medication and having scars was considered 'weird')

Although I try and avoid calling myself a patient and playing a victim to my health issues, i still have to constantly remind myself 'I'm not like everyone else'. So I try use that as a positive. For me the differentiation is so important, because it's a constant reminder to 'make sure I drink enough water' or 'have I taken all my medication today'

If I've learnt anything, then I know that the journey of a transplant patient is unique and special because we don't take our life and health for granted and each milestone requires support from like minded individuals and professionals.

Do we know if there are similar support mechanisms available for those who are going through what you are facing now?

Until I found this site, I always thought I was one of very few who had my transplant for such long duration, doctors could never really tell me how long my kidney was going to last. In my opinion Science doesn't seem to know either, although all our journey's are different, I can imagine that we all have experienced similar questions and fears. (Hence why we're on this blog)

If my understanding is true maybe there is an opportunity for us to collectively identify a support network (like this) to reach out to others, who feel alone.

manbreak / Bigdeb62 can I ask if your hospitals offer any additional support?

Do you find it easy to talk to loved ones about your fears?

If this community could support you, what would you want to see/hear from us?

Anjana

[manbreak]

Hi Miss A_V_P I have never had any kind of help with counseling its never been offered to me and as you say its very hard sometimes...

I did ask one of the renal consultants when they first told me that thus kidney was failing and I was finding acceptiing so hard but was told they don't have anything in place......

How long have you had your Transplant hope you are still well this message board is good for realising we aren't the only ones living with this....

[Miss-A-V-P in reply to manbreak]

What part of England are you based in? I'll do some research this week and share what I find. Another suggestion could be for a few of us to try arrange a meet up? I can tap into some of my networks see if any professional are willing to offer advice.

I'm based in London, but happy to travel. I'll blog something see what kind of interest we get.

I'm guessing a lot of Transplant patients do meet up, unfortunately due to my busy work schedule I'm hardly in the country. But thay excuse needs to stop and I have to make time

I've had my kidney for 20 years. It's always been in the back of my mind that it won't last forever, although I feel like I'm prepared for that day, i don't think anyone can dictate what's going to happen in life.

Don't give up hope (I know it's easy for me to say), but a positive attitude makes a world of difference.