Self Management -- Haemodialysis Risks Solution (DIY)

Wednesday 2014-06-18

When dialysis time comes I always need to arm myself first. A part from hot water bottle, blanket, warm socks, Iron, Aranesp that most dialysis patients carry, my stash also include bed pan, bananas, candy, chocolate ice, grapes, saline, Mersyndol, Tabellae metoglopramidi, hirudoid cream, and ice cubes. Imagine when I was a vagrant patient without a locker the size of luggage I lugged along.

Ever since I started taking Perindopril to counter my hypertension I noticed not only did it increase my heart beat to around 110 p/m it also raised my potassium level. The racing heart was too much for me, I stopped Perindopril in exchange for Metoprolol. But since I stopped perindopril my potassium after dialysis was brought down too low, fighting this I started brought banana along.

I tasted the feeling of low potassium right after my very first dialysis. My heart flustered like crazy and my chest was restless, ECG was strapped on me twice. Before dialysis that day my potassium was 2.9mmol/L, it must have dropped to a terribly low level afterwards, doctor C gave me a yaki glass of liquid with 2 fat Chlorvescents dissolved in it the feeling and taste were unforgettable.

I relayed the banana story to doctor A who said I shouldn’t do that. I also raised the issue and changing of K bath to other doctors, everywhere I turn I find walls, I didn’t know that adjusting solution was taboo and like some other things such as Heparin which is also untouchable. It seems that doctors rather like adding more pills to counter whatever negative impact than adjusting the solution. I raised the same thing to nurses as well, one of them said banana is cheaper that adjusting the bath.  Self management is the only solution I can find, my list of necessities grew.

Not long after home training, on 3^rd March I was coerced into doing extended hours, within 2 weeks one more hour was added against my strongest objection. The stash of essentials I brought along increased. The first was bedpan, then extra saline to compensate the urine I passed on dialysis with the increased hour. After months of battling the nurses not to remove my fluid, this unit seems to think that I was dehydrated and began giving me fluid.

With increased hours my discomfort or rather my misery increased, I was losing a lot of sugar and protein through urine, I began to bring candy with me and I found eating a large souvlaky also helped. One other thing is my chemicals are all knocked out of whack. My test before dialysis shows most of them quite in balance, the one afterwards is quite worrying.

Here are some numbers, my albumin would drop from 41g/L to 35, phosphate from 1.26 mmol/L to 0.56, potassium form 4.4 mmol/L to 3, chloride from 0.94 mmol/L to 0.8, calcium from 2.23 mmol/L to 2.13, sodium didn’t do too bad only dropped from 137 mmol/L to 136, considering I took on around 300ml of extra saline and doing 140mmol/L sodium bath. Gosh, what a price to pay to have just one item changed to the better while the rest took heavy battering. I can’t say specifically how one feels when each item is been bashed, I do know when combined I feel terrible.

Longer hours wash out more middle and large size molecules which my urine still has the ability to process, with the increased hour and higher urine output, I copped double whammy.

I found hot bottle can prevent my cramping, unlike when I just started dialysis when it was caused by removing too much fluid through UF setting which could only be helped by infusing saline.

The longer I did longer hours, the worst my health became I started to have headaches and nausea, with time they worsened. When I took the fight with Associate Professor P on Monday, March 17^th, I pleaded my case not to have my hour extended with vigour and fervour, 6 weeks later on April 28^th I went to see him again holding a vomit bag and battling a monstrous headache couldn’t even sitting up let alone uttering a word. It took another Doctor’s visit to obtain Mersydol, Panamax proof useless, counter nausea pills are also have a place in my stash.

However, the pills can only do so much I still need to eat chocolate ice or grapes. In the end, sugary stuff and lapse of time combined brought me back to feel human again. The trick is if I could predict the headache and nausea were coming and have cool sweets before they arrived, I could actually prevent it happening, most of the time I fail taking the hint rendering the whole day useless.

Thursday, May 1^st, I started using fistula and my vein got blown often, Hirudoid cream and ice cubes came in handy helping the bruise and swell. It seems my vein is quite shallow lies just beneath the skin. The workable length is very short which includes a dog leg. Longer needles puncture it easily. After repeated requests and 3 vein-blown later, short needle was in.

Nurse Manager L single-handedly blew it twice out of three which I made it known to her each time. I thought what the hack, the worst I could do is to blow myself. I volunteered and permission granted. I did exactly that. That day I went home arm fattened and darkened without being dialysed. Nurse J said to me that when I were ready again call her. The healing took 2 weeks, including the previous 2 punctures I could not find my arm for 5 weeks.

One week after Nurse L did it.

One minute after I did it.

When started dialysing at home, first thing I did was to ditch the bedpan, hot bottle (my home is properly heated) and the extra saline during. I still take on more saline, but instead of during I take it in the end, I now wash myself very clean, all my lines are near white even the venous bubble trap is reduced to light pale pink. I kept the fruits and sugary stuff which I grew quite fond of. The pills are on and off, I just hope the sacrifice I made exchanging more hours for the chance of dialysing home wouldn’t be long lasting that the bettering I took didn’t reach the point of no return.

For now at least one thing I’m sure of that’s I’m not losing as much middle and large molecules. If nature almighty willing I might one day get rid of the pills as well.