Dialysis, Transplant and beyond

I thought i would write a blog about my current health situation and how i am dealing with it and how it is affecting my day to day life.

lets get you all up to date then, back in 2009 i was sent to my GP’s after a routine MOT by a private medical company as they found a high amount of protein in my urine, i thought (wrongly) that this was done to the amount of Protein i was eating, back then it was circa 350g per day.
I had my appointment with my GP who pretty much did 2 things, firstly he lectured me on the use of Anabolic Steroids and then referred me to the renal clinic at the local hospital.

the lecture i could deal with, had it many times before and to be fair what the average GP knows about steroid use you could write on a stamp (a GP told me that), what i was concerned with was the speed he referred me to the specialist, 3 weeks later i had my first appointment and from that first appointment i realised that my steroid use was going to be the ongoing topic to which she would beat me over the head with on every appointment, she made no qualms in telling me i was scum for using steroids (not in those words but you get my jist)

So over the next 9 months i had every conceivable investigation on the health of my kidneys from ultrasound to a biopsy then end result at the time was that they could not find any issues, as you can imagine the consultant and her attack on me and my steroid use was not repeated in that last appointment although she did at the end say that if i did not stop using my life would end and i would go to hell (well that’s what she might as well of said)

fast forward 12 months and i had another referral to the renal department by an over eager GP, this time my numbers were slightly more elevated……i had the appointment and again went through a few more investigations which ended with yet another biopsy, which for those that have never had one is not the nicest of procedures……
the result of this biopsy was to show a slight degeneration of my kidneys, after a lot of appointments over the next 6 months i was eventually diagnosed as having Secondary FSGS Kidney disease……

What is Secondary FSGS Kidney disease:

FSGS is a rare disease that attacks the kidney’s filtering units (glomeruli) causing serious scarring which leads to permanent kidney damage and even failure.

Secondary FSGS means that doctors think the FSGS was caused by or is associated with, another medical condition that occurred first. How the other condition caused the FSGS scarring is not always certain. Some causes of secondary FSGS include:

– Kidney defects from birth (dysplasia)
– Urine backing up into kidneys (kidney reflux)
– Obesity
– Obstructive Sleep Apnea
– Viruses and blood disorders (such as HIV and sickle cell anaemia)
– Autoimmune disorders (such as lupus and HSP)

So that’s what i have……it wasn’t caused by the steroids i have used or the amount of protein i have eaten, my new consultant when i asked him why i had it he responded with “Its a blood disorder, that has never shown up, if you was a golfer you would be in the same position as you are now”
now that alleviated the worries i had concerning what i had used over the years and the potential damage i thought they had caused.

I have had several discussions with my consultant who unlike the first one i had does not preach to me about bodybuilding or steroid use at all, as he has said “steroids have no direct effect on the kidney’s” it’s your Blood Pressure you need to watch as that is the real issue with kidney damage.

So fast forward to September 2016 and my kidneys dropped 20% in a few weeks when we looked at the potential cause it was eventually put down to me being dehydrated whilst on the family holiday at the end of August.

my levels had a small rebound and we thought everything was going to be fine but unfortunately not and they started to again fall and by Christmas, they were down to 14%…..

I was placed on EPO injections in November to help with the oxygen in my blood as this was getting low and affecting my breathing pretty badly, so my medication at this point was the EPO and Ramipril, the Ramipril was to lower my BP although i didn’t have high BP but the lower we could get it the better for my kidneys.

Due to the state of my kidneys and that they had dropped to below 15% i was placed on the Kidney transplant list, fortunately for me both my sisters and brother volunteered to be tested to see if they could become a donor, although my brother wasn’t a match both my sisters are…….

so in January 2017, we started the process for my younger sister Sarah to be worked up to become a live donor, the plan was to go through with the transplant as i was doing really well although my function was 14%……..

Then on Saturday the 15th of January i felt really rough, worse i had felt since the September before when my levels dropped dramatically, i dismissed it (as us men do) as just not sleeping well and a hard week in the gym….

the following week i had a couple of blood tests at my local surgery, the results of those showed that my function had dropped to 10% not knowing what to do as the surgery was useless, i called the CKD team to let them know what the recent blood test’s showed and how i was feeling, i was very fatigued at this point.

the outcome of that call was for me to drop into the clinic the next day (21st of Jan) just for a general check-up, i arrived at the clinic at the local hospital at 10.30am the Kidney nurse took one look at me and admitted me for dialysis…..

to say i was shocked was an understatement, dialysis was never spoken about as an option as everyone thought that my kidneys would be fine until my live donor was all sorted, then i would have the transplant and hey presto all good and new……..

that Friday was a long day, i had a chest drain placed in my chest for the dialysis, believe me this is not a nice procedure and basically involves a tube placed in the artery in your chest that goes directly to the heart…..this is what it looks like

As you can imagine not a great thing to have inserted, i had some real issues with it in the first 2 weeks as it was catching on my arm at night and bleeding all the time, thankfully by a repositioning the external tubes this no longer happens…..

so that was it dialysis 3 x week, my current timetable is Monday/Wednesday/Friday 9.30am until 1.30pm although with the process for connecting me and unconnected me from the dialysis machine i am normally in the unit for about 5hrs.

its been a rough 8 weeks since starting dialysis, i really was not prepared for it at all, i am trying to keep things as normal as possible.
so still training, still working and still able to do things with the family, but when i think about it all, it’s not the same, i am not the same, i just try to get through it as best as i can.

i look around the unit and see old people who have been on dialysis for years and here i am only been on for 8 weeks thinking negatively then i realise that it could be worse, i have a live donor so i know all things go well i will be transplanted sometime in May or June

how has this all affected me as a bodybuilder? well my training is reduced to 3 days a week (Monday/Wednesday/Friday) these are the days i have dialysis, i have a tad more energy although the combination of dialysis and training does wipe me out for the evening post training, but i am getting a lot of enjoyment out of my training at the moment, i think if this was taken away i would really struggle.

i have had to restrict the weight i use and the volume but to be honest i am still training and although that might not seem important to a lot of people out there i would hope the majority of the people who read this blog will understand training is a part of who we are it’s not just what we do…….

i think that’s enough for the first blog on this subject, i intend to keep it updated at least weekly with my current training and general feelings about dialysis and ultimately the transplant so be good to have you all drop back in and read the updates…..

12 comments on “Dialysis, Transplant and beyond”

  1. Alan Reply

    I hope you’re ok paul, you’ve given a lot to so many people in your sport, so I hope the support goes both ways.

    Alan (ukm)

  2. Khalil Reply

    Wow heartfelt mate. Just wish you all the best with the op and post recovery.

  3. Ollie Reply

    Hello there, You don’t know me, but I have met you a couple of times at Forest gym and at some shows. I also read your columns and use some of your info in my weekly training. I’m sorry to hear the news but sincerely hope that your transplant goes well and the love of your family gets you through this. Wishing you everything good.

    • Pscarb Reply

      thanks buddy, chuffed you have got something from my columns and ramblings on the net mate, next time you see Harold give him my best please

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