There is fun to be had and there's always room for change

[jessie2pigs]

Hi guys, first of all, I'd just like to say what a great site this is, and thank you for allowing me to be part of your community.

I've been a renal patient at St James' Leeds for longer than I care to remember (43yrs!) *Groan* In that time I've met the great and the good, been to hell and back, but I'm still here! None of us has the same experiences so please feel free to share yours and I hope any of the things I went through can show we are stronger than we think and to never give up. This is just one experience...

I was 19 when I was diagnosed with PKD (Polycystic Kidney Disease) I was being scanned for Gall Stones and those sneaky little cysts made their surprise appearance. My mum and some of her siblings had been suffering from abdomen and back pain for years and had been back and forth to their doctors but no conclusion was ever made. So when I got the diagnosis my mum contacted them and suggested they be tested too. Lo and behold four out of the seven had PKD. They went on their own journeys. Mum eventually went on haemodialysis and after six months of being on the transplant list, she received a very healthy kidney which lasted the rest of her life. She never made a 'thing' of it, but I wish she had told me more. And this is what I would say to anyone. TALK!!

Information is empowerment, it's about taking control and building confidence to make informed decisions about YOU! Learn as much as you can, question everything, discuss, discuss, discuss. Don't shield your family, they need to know what you are going through, they can take as much or as little info on board as they want but it's another life lesson that may one day be useful to them.

When I eventually make a run to the rainbow bridge to be with my beloved furfaces again, I know people will say, 'Oh she never had the best health.' or 'She was always poorly.' Not things like, 'She was a survivor.' or 'She was strong.' or 'She never let her health stop her from doing what she wanted.'

I went on a cruise around the med with my father and two sons. I missed going on two excursions out of six due to dialysis but that was better than missing the whole fantastic experience. It was one of the BEST holidays ever and in time it was to change not only my life but those of my fellow patients back at home.

Every first Wednesday of the month we used to have an injection of Aranesp and by heck, it stung like hell! You'd think with everything else going on another jab wouldn't matter but it did, it hurt! I took my injection with me on the cruise as it was due while I was away. At the end of the very last session I still hadn't been given it and I asked the nurse. She said it had been put into the machine. I couldn't believe it and to be honest I was a bit scared. The guy who was dialysing with me was Austrian and when he saw my panic he told me he had never received it via injection, it was always administered in his machine. At dinner that night I asked the other renal patients we shared tables with. Japanese, Spanish, German, Italian...and Alan from Bolton all told me they had the Aranesp in their machines! This was a huge revelation to me. How come all these people from around the world, and Bolton, received it differently from us?!

When it came to the next first Wednesday of the month and the male nurse arrived with my dose of OUCHYNESS I asked if he would put it in my machine, please? He looked at me like I had suddenly grown the most enormous gruesome boil on the end of my nose! No, I could not have it in my machine!?! I asked why when people from far and wide - and Bolton - had it in theirs. Why did we have to put up with yet something else - that was completely avoidable - when there were so many other things we endured! He got very angry with me. He told me I was wasting the very expensive medicine - I told him I wasn't wasting anything I just wanted it in a slightly different way. He said it had to be passed by N.I.C.E before it could be put in the machine...I argued it must have already been passed because Bolton was only on the other side of the Pennines! It escalated and he phoned my consultant.

Dr Will was an amazing man, mum and I had known him for over twenty years and we had a very good, mutually respectful relationship. After electing to have my second kidney removed earlier that year (2005) he told me I was the bravest person he knew. (We'd been through a lot together!) Even so, when he arrived at the unit at 10.30 that night even I thought he was going above and beyond. We discussed the problem at hand and I explained my experience to him. He listened and took it on board and he told the nurse to put the meds in my machine. He must have discussed it with his colleagues because a couple of months later the whole unit had Aranesp in their machines. He was a brilliant brilliant man and a fine example to any budding doctor.

On board the ship (Costa Atlantica) the hospital bay had cabins with double bunks where two people could dialyse at the same time, the nursing staff were Italian and some could speak good English, it was quite entertaining at times, and all of them provided exceptional care. Dialysis doesn't mean you can't continue having a bloody good life, yes you might be full of pain, aches upon aches, no energy, tired beyond belief and everything else that comes with it, but an injection of something fun in your life will not make your life worse.

[Jayhawker]

Thanks for sharing this wonderfulAnd inspiring post! It’s just what I needed!!!

Jayhawker

[jessie2pigs in reply to Jayhawker]

Thank you so much, I hoped it would reach someone who needed to see that fun is to be had and is out there, no matter how we are feeling, sometimes it's the lift we need to carry on. And then plan for the next adventure. I hope you are well ☺️

[Silkdog in reply to jessie2pigs]

To me, a positive attitude is very important in the process of healing, otherwise, you'll be so depressed and make your life miserable. I know it's hard to do, but that's something we need to do.

[jessie2pigs in reply to Silkdog]

We might lose body parts during our kidney journeys but a sense of humour cannot be touched and can be used well to get through many things.

[RoxanneKidney]

Holy moly that is quite a story. I'm going down fighting too. We are all given one life, and no one or thing will take mine easily.

[jessie2pigs in reply to RoxanneKidney]

Good to hear 😊 Our bodies, our minds, our decisions. Just because we are sick doesn't mean we have lost the ability to understand and offer our opinions. Stay safe xx

[KidneyCoach NKF Ambassador]

Studies have proven these type medicines are up to 70% more effective when administered via subcutaneous injection vs. into bloodlines while on dialysis. Just an FYI. BLESSINGS

[jessie2pigs in reply to KidneyCoach]

Thank you very much for your input. It is good to know there are studies that draw these conclusions and put them out there for people to make informed choices. That really was the point of the whole issue I had. No one in my unit in West Yorkshire had any idea about the difference between treatment for the same thing across the world and less than 50 miles away in Bolton. I don't know how many more people still have the Aranesp subcutaneously and, if informed, would prefer it administered in their machines, but I do know there wasn't one single person that complained about the change on my unit ☺️ Kindest wishes to you

[horsie63]

Best story ever! I think you are the strongest person I've read on here.

[jessie2pigs in reply to horsie63]

That is very kind of you to say so but there are people that inspire me who are much stronger and braver. If we can soak some of it up from each other then it can only help. I hope you are OK and I send you my very good wishes xxx

[Ladyprudence]

What a fantastic story, jessie2pigs. Sometimes we have to stick to our guns and not take No for an answer till the conversation has been just about exhausted.

[jessie2pigs in reply to Ladyprudence]

I absolutely agree with that! 😊