March is Kidney Awareness month. That is one month out of every year where the public is made aware of Kidney Disease. For a sufferer of kidney disease, they are aware of it 24/7 & 365. There is no escaping it.
Diagnosis
Lee was diagnosed with Kidney failure over 2 years ago. The decline was gradual and not easy to notice at first. After spending every day with him for the last 7 years, I couldn’t see the change.
Symptoms
First, it was sleep. He just couldn’t stop sleeping. He couldn’t wake up in the mornings. I could be having a conversation with him in the evening and he would literally fall asleep mid-sentence. My frustration growing, I was mistaking this for laziness and got angry all the time when he wasn’t helping me at home. I felt like I never saw him as he was always just sleeping.
This is one of the ways that kidney disease is so cruel. There are no obvious, physical symptoms. To look at Lee, he might look healthy, you wouldn’t know there was anything wrong. The only clue is the faint outline of the PD catheter through his T-Shirt. The method by which he administers dialysis every night. Lee chose this type of dialysis because it is the least intrusive on his daily routine. It effectively all takes place during his sleep meaning that he can carry on as normal during the day.
Next, it was his skin tone. I hadn’t noticed. It took a visit from a friend who hadn’t seen us for a while to pull me aside and say how ill she thought Lee looked. With fresh eyes, I could see it. His skin was grey and around his eyes yellow. At the lowest point, around Christmas 2018 he was just a shell of himself. Going through the motions every day but completely exhausted. He slept through Christmas Day whilst my family all celebrated around him. No wonder. His kidneys were functioning at just 7%. Imagine all those toxins in the blood not being removed effectively. He was slowly being poisoned from within. However, he photographed an entire wedding on New Year’s Eve and you wouldn’t have known how ill he was. Only once he got home and slept for 15 hours straight would you realise.
Dialysis
Kidney Awareness Month is a great opportunity to share what kidney patients have to go through. It still astounds me now how ill they let Kidney patients become before starting dialysis. In January 2019, Lee was fitted with his PD catheter. A tube that goes into the peritoneal cavity so that he can plug into a machine that uses fluid to flush the toxins from his blood throughout the night.
Dialysis bought a whole other set of challenges. A monthly delivery of over 30 boxes to be carried up 2 flights of stairs. Then monthly trips to the dump to dispose of all the boxes and waste. Then being in bed by a certain time each night so that the treatment has time to finish in order to get up for work the next morning. Not being able to travel without the headache of organising the transport of supplies. And the simple things like not being able to ‘cuddle up’ without pipes everywhere. He cannot take a break from dialysis. It has to happen every night.
Steve the Nemesis
Steve is Lee’s dialysis machine. The nickname we gave it so we can talk about it in a less medical way. “Steve was a pain last night” is the usual next-day conversation. As Lee is such a heavy sleeper and still always very tired, he often lays on the pipes leading to his machine. That activates an alarm that continues to sound until Lee wakes up and deals with it. This also means the alarm can ring for minutes and Lee continues to sleep through. I have to wake him (which is not easy) so he can untangle himself and press the button on his machine.
Fight night
The worst night we had was over 70 alarms. On average now it’s around 20-30. On occasions I have got so annoyed that Lee won’t deal with it, I have stormed out of the bedroom to sleep in the spare room. But as I lay there hearing the alarm continuing to sound, I feel guilty and have to go back and wake him. There was also the time I was tapping him so much to wake him that he lashed out at me in his sleep. We’ve had accidents with the waste bag fastenings that have resulted in all of the waste fluid spilling across the floor or into the bed during the night. We are both not fans of Steve!
On the plus side, we managed a trip to New York with dialysis supplies in tow so we try to continue with normality as much as possible.
Transplant list
Lee has been on the transplant list for 1 year now and we continue to wait. We are aware that without a matching living donor, that we have to wait for an unfortunate loss for a family so that Lee might receive a kidney. That is a burden in itself. And then the worry of rejection but that is all in the future. Another worry for another day.
The dialysis is helping Lee to feel a bit better although still tired all of the time, he looks more like my ‘old Lee.’ After just 1 month of dialysis, you could see a difference in him…
Final thoughts
I can’t imagine what Lee really goes through in his mind on a daily basis – he’s not a great talker. I only know what I see which is someone so chilled and ‘go with the flow’ that it’s easy to think he is still in denial about his illness. It’s hard watching him go through this and at times I feel helpless. Every day he is faking being well when really he is not well at all. So for that one month a year when you might see a post or two on social media about Kidney Awareness Month, for some, it is a daily battle just to function as normal.
To find out more about Kidney Awareness month, visit the website
