Need to know
For #TeamEEAST Last updated: 18 May 2024 at 12:33
To mark Disability History Month Rachel talks about the dialysis she receives as a result of her CKD.
My name is Rachel and I have CKD – chronic kidney disease. It is now end stage often referred to as ESRF (End Stage Renal Failure) as I only have 3% function and now do dialysis 3 times at week to stay alive (I know that sounds blunt, but it is what it is).
I am very honest so there are negatives as well as positives…
I was diagnosed with Stage 3b (there are five stages) of CKD when I was aged 25, when I first got pregnant. There were complications and I miscarried twins a week apart – the cause was excess protein in my urine and my creatinine was high. Tests were undertaken and I had a biopsy (ouch!), which led to me being diagnosed with Glomerulonephritis.
This in time develops into Nephrotic Syndrome. It just means all the glomeruli in the kidneys attack their own tiny filters by being constantly inflamed and cannot remove excess fluid, electrolytes and waste from the bloodstream and pass into the urine. Your kidneys just attack your immune system. I ended up looking like a puffer fish!!
I am now 3.5 stones lighter since starting dialysis. I was in stage 3b for 17 years then went into stage four then quickly progressed to stage five within two years. My symptoms ranged from excessive urination every 90 minutes but only small amounts that were always frothy and dark, fatigue, general ill feeling, coughing, shortness of breath all the time, body swelling, nausea, and vomiting.
Even though I am now on dialysis I get lots of symptoms which are chronic body pain, nausea and I vomit a few times a week, feel unwell everyday (forgotten what is normal now), shortness of breath and my joints and muscles hurt. I have developed osteoarthritis, gout and underactive thyroid due to my kidneys failing.
However, the positives are that I do not suffer with high blood pressure (its low!), no high cholesterol, I have normal potassium and phosphate levels and no diabetes which is excellent in a kidney patient. Another positive is I only wee once a day!
I work full time too. Some people ask me how I do it. I don’t know is the answer truthfully. I don’t want to get out of bed some days, but work gives me a purpose. I sometimes think if I didn’t have work, I wouldn’t bother to dialyse then I would be dead in a matter of days – morbid I know. It is how it makes you feel. By working full time, it gives me some semblance of normalcy, I get to see people (dialysis killed my social life and lost all my friends). It keeps me active and makes me feel normal.
This has been a real-life changer, in some ways for the worst and some ways for the best. I lost friends as I said above, and family don’t understand, and it has killed many relationships, but it has opened my eyes to the world a bit more, made me more spontaneous and adventurous. I want to try new things. My husband is amazing and so understanding and helps me a great deal, I am very lucky in that respect.
I also learned to do shared care in the hospital. I like to know what is going on and do endless research into my disease and dialysis and do challenge the nurses! They are not always correct. My nephrologist told me I am “professionally challenging” but at least things get corrected.
I cannulate myself 3 times a week and it is much better. I was so scared though and refused to do it for 2.5 years!! I have been doing it just over a year now. I monitor all my bloods and know when something is amiss and can point this is out if it is missed at the renal unit.
However, dialysis life is incredibly lonely. It is mainly older people, and some people have other conditions and are rather poorly. Due to COVID I have lost a lot of people at dialysis that I knew due to this and have witnessed death on the unit due to cardiac arrest – very distressing but you must move on and have real mental strength and fight every single day for your life.
Having to go to hospital three times a week and travelling takes up 15-16 hours of my week on top of working, it does not leave much time for anything else as I’m too fatigued to do anything else. You do not have an option to stop dialysis once started – it takes only between 5-21 days to pass away.
The thing that gets me really annoyed?
People and colleagues saying “you look well” – I know I look well because my disease is invisible, totally invisible, but I am dying inside out, and I can feel it deteriorating over time and you just cannot articulate it. Or when people say “I hope you get better/improve soon” – its chronic! It does make you sound a bit bitter at times.
But I am positive and determined and smile each and every day and put myself out there to help and support others where I can. I admin a kidney group on Facebook and have over 600 members. It is a nice supportive group.
There are many types of kidney disease, but ultimately, we all end up on dialysis, whether haemodialysis or peritoneal (via stomach). Lucky people get a transplant, some of us not so lucky as not eligible but we keep on fighting day by day. Life is for living. Let’s make it count. Determination and willpower are the best medication you can give your body. I am living proof of that so far.
Published 11th December 2021