This is the subject I thought long and hard about writing… I contemplated recording a video of the procedure but I wasn’t brave enough for the world to see my catheter 😕
If you aren’t keen on the sight of blood then please don’t read this blog. I was torn between just writing about this and not adding the photos, I didn’t want people I care about to see me now…but it’s me at the moment and I know if they really care they can see past my little tube in my tummy.
I think if I knew in January when I agreed to having the Tenckhoff fitted, what I know now I probably would have chosen to stay on hemodialysis… as much as I hated that tube in the boob it didn’t make me feel like I do about myself now.
They tell you that you will get your independence back, your not tied to a dialysis unit every other day, they make it sound wonderful.
I miss the people I dialyzed with, they understood, they knew the way it made you feel, we were a family… a strange unrelated family and I loved every one of them. Now when I dialyze I sit by myself at home or in the disabled loo at work, just me… no one to keep an eye on me, to make sure I’m ok.
The process of peritoneal dialysis, I’ll call it PD from now on as its such a mouthful is relatively simple but it’s how its affected the way I look at myself… my body…is the bit I’ve struggled to cope with.
The tube was fitted in April, I couldn’t wait to have it done, it was covered with dressings for the week or so, I couldn’t see it and I was oblivious as to what awaited me when the dressings came off.
I had to go to Bristol to have the catheter fitted to the tube coming out of my tummy 2 weeks after the surgery. I was unprepared for what I was about to see, as Tracey gently took the stuck dressings off my tummy to reveal an angry sore little hole in my tummy with a tube coming out, she then brought out the attachment that would screw onto the tube, it had a clamp on it and a catheter. The tube once it was attached and left to dangle reached my knees. ☹ I hated it on first sight but made jokes and kept smiling.
Now I had to use it…So each home dialysis session starts with a minute of handwashing, very specific handwashing… I’m allergic to the chlorahexadine they supply so I have to use carex so my hands don’t blister. Once I’ve washed my hands I can’t touch anything, door handles, stair bannister, even my own body for fear of contamination. I then use alcohol gel thoroughly on my hands. Next I use a disenfectant wipe to wipe down my tray and the organiser my dialysis dial clips into. Next I peel off the plastic on my dialysis bag and pop the 2 separate chambers to mix the fluid, this can then be hung on my drip stand. Next I take out a new catheter head and add this to the organiser, take out my tube and gel hands again. I connect the tube into the right side of the organiser and unscrew the middle port, removing the cap and then uncrewing the tube and moving to the central port. Once screwed in I can unclip the clamp and the fluid that’s in my tummy starts to drain out of the tube and into the waste bag. This takes approximately 10 to 15 minutes, I know when it’s done as I feel a painful pulling in my tummy a bit like a contraction. I then know it’s time to move onto the drain in, I move the dial from 1 to 2, count to five and then move onto 3… the fluid in the bag on the drip stand then drains out into my tummy. My peritonium naturally filters the waste like a sieve. Once all the fluid has drained in its left to do its job. Depending on the results of my PET test, I know if I’m a fast or a slow transporter. I happen to be a fast transporter, meaning I need to have my dialysis sessions closer together otherwise my body re-absorbes the fluid and with it the poisons that make me unwell. So my sessions and the fluid that I drain off are carefully monitored, samples of the fluid as well as many bloods are taken regularly to be checked. I was doing a session morning, lunch time, tea time and one before bed time, but now they want me to dialyze every 2 hours to get the most amount of fluid off. I have three different types of bags, two are glucose and one is called extraneal. The glucose bags are yellow and green, I pull off more fluid with the green bags as they have a higher glucose content, but your body will reabsorb the fluid if left in too long. The extraneal I use overnight, it needs to be left in overnight for a minimum of 8 hours, this bag is starch based and I cannot reabsorb the fluid from this. This pulls off much more fluid. Each bag is 2 litres going in and I can quite often drain 3 litres off in the morning!!!
Once I’ve drained the bag into my tummy it’s time to disconnect, so I move the dial to 4 and close the clamp on my tube. Alcohol gel my hands thoroughly again and then unscrew the tube and screw it into a new catheter end. I can then put the tube back into the dressing on my tummy.
I have to change the dressing everyday, this is a another lengthy process of cleaning and redressing, I can’t have a bath or swim. I can shower but carefully, I have sticky pouches I stick to my tummy that hold the catheter tube.
Having a large dressing on my tummy all the time has played havoc with my skin, other PD patients I have spoken to also have problems with the adhesive on the dressings, they make my skin red, sore and itchy… I’ve scratched my tummy until its bled a few times…
So would I go back onto hemodialysis if I could? The simple answer to that is I don’t know… so many pros and so many cons with each treatment. I love having my independence back and being able to go back to work but I hate feeling more poorly, I’m not dialyzing as efficiently on PD and it makes me feel much more tired, often queasy and the RLS is sometimes unbearable at night.
I hold onto the fact that this won’t be forever… thanks to my Sister Helen I WILL get my new kidney and I will have a second chance at normalcy… at least I hope I do.
I can only dialyze on PD for about 5 years before it stops working and I’ll have to go back onto hemodialysis… statistics say that most patients can last up to 10 years on dialysis before other complications set in and sadly those with other health complications and age against them will never make the transplant list, this breaks my heart for them…
One day it might be me and I’m not sure how I would cope with the fact I would die on dialysis… at least today and tomorrow I have hope…