I’ve been watching a lot of comments in our Facebook group of how “I Crash Landed into CKD”. Well my journey was more of a gentle slide from birth but hitting a large amount of bumps and rocks along the way turning me into the fine figure of a man I am today. Isn’t that right guys? Err why are you all laughing? So in some ways I feel like I’ve had it easy to cope with mentally as I have gently slid down the very long slope of IgA Nephropathy. It has given me time to get to grips with things at a nice pace, getting to know the terminology, renal diets etc. I can’t imagine what it’s like for you guys who are a picture of health one minute then thrust into this horrible turmoil like hitting a brick wall at 100 mph? So here and now I will apologise if some my comments appear flippant and laid back. Having met 100’s of patients over the years and been in and out of hospital, it has allowed me to absorb information to become very knowledgeable in many aspects of CKD, AKD various conditions and treatments.
Coming from an IT/Telecoms background I treat my health like a technical project and can always find alternative ways to achieve my goal of fixing a problem without getting phased by it all. So to reiterate a comment that Dennis Crane made earlier on Facebook about being lucky to have had a transplant then if being lucky means reaching the age of 28 before any biopsies had to be done ( I had an extra one just for good measure) then I am lucky. If reaching the age of 49 and 364 days before I started my Transplant Workup, then I’m Lucky. If not having to start any dialysis treatment till I was 50 years and 6 months old then I’m lucky. If managing 3 & 1/2 years on APD before it failed, then I’m lucky. If having a fistula made and transferring to maintenance HD 4 & 1/2 hours 3 days a week for 8 months, then I’m lucky. Getting a transplant in May 2009 and having nearly 4 years of serious hospitalisations with everything from pseudomonas, post transplant diabetes, and as a result getting a giant Pioderma Gangrenosum (PG) ulcer on my leg with the threat of treatment using maggots. Well after all that it’s lucky I’m still here to tell the tale.
The one great thing that has really made me feel lucky is the large circle of renal friends I have made over the years that have supported me all this time and now, becoming an active member of the Hope KPA and now GMKIN, I feel I can give something back and support others via this network.
Thank you all very much.
Hi Stuart,
What a journey! I don’t know about being ‘a fine figure of a man’ cause I have never met you but I know something about you and that is that you are STRONG. You have hurtled down that slope and confronted all those pitfalls and come through with courage and a ‘never give in’ attitude. And I guess it’s us that are the lucky ones for having you as a friend, that’s from one posh scouser to a brave scouser!
Lindsay.
Having been involved with GMKIN for a few months now I’m staggered at the sheer variety of routes taken into kidney disease, none of them easy, yet we all seem to find a way to deal with it. I think we all have the strength that Lindsay mentioned in her comment.
However there is no doubt that my journey has been considerably easier than many including Stuart’s and Lindsay’s and for that I’m grateful.
Hi Mark, like you i knew from an early age i would need Dialysis at some point. 15ml of medicine kept it at bay until it took hold at 14 years old and i started PD. It really amazes me the differrent ways people have come to need Dialysis and/or Transplantation. I have been doing this a long time and learn something new at least weekly. I had neve heard of things like IGA until being involved in this and other groups.
Like you say, i feel for people that have had this thrust upon them and think that even though i have been “ill” most of my life, i was more prepared for Dialysis even at only 14.
I hope you continue to have the positive attitude you have displayed here and keep yourself as well as can be.