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.

Haemodialysis Risk—Fresenius 5008

Monday, 2014-06-16

Last Thursday, 12 June, I went back to the centre learning needling. It supposed to be a quite day, there was only me and a fellow patient R who came to reduce his fluid, but the day ended in chaos.

For some reason after 2 years of self dialysis R recently put on 12kg of excessive weight than his normal dry one of 88kg, his legs and feet swollen quite badly.

It’s more than a month now since he noticed his problem and came back to the centre doing dialysis at least twice a week. R told me his condition hasn’t changed much. If my memory is correct when I first met him his excess weight was 10kg. The nurses have arranged quite a few extra doctors’ appointment for him. One day after dialysis when he visited the specially arranged doctor, he fainted then and there on the spot.

Nearly 2 months passed, the nurses and doctors are still searching for a remedy. That morning there was a dietician came talking to him for quite a long while. It seems his protein level is extremely low even with the supplement he’s taking. For now at least the level is stabilised.

Every time R came over, he is hooked up with the best machine available which is a Fresenius 5008 fitted with all the latest bells and whistles, much flashier than the BVM 4008S – the lie detector they used on me.

R had poor luck again that day, by the time I finished my session of 3 hours and 20 minutes (my bladder wouldn’t last my obligated 4 hours), he had already passed out on the machine and required oxygen and infused saline which was standard practice. All the nurses were hovering over him. When I left his eyes were still firmly shut.

Obviously again his fluid was removed too fast, on a wrong pace and in a wrong way like other patients I’ve seen both here in this centre and in a few other units.

That morning when he was getting on I wanted watch and learn but the nurse manager L gave me the marching order.

For nearly 2 months the treatment didn’t produce much effects except giving him a few fainting episodes. Whatever has been done to the man is not working.

R told me in the past 2 years he always felt fine and wonderful after dialysis, only recent months his legs and feet became swollen fat. He’s been doing 8 hour sessions at home alone.

This centre opens 8 hours a day and 5 days a week. The 8 hours includes time for preparation, getting patients on and off and shutting down the machine. The nurses don’t do shift and they too, like everybody else need finishing the day off and going home to be with their family, as a result the longest a patient can do here is 6 hour sessions even though they might do 8 hours at home which is what this centre preaching for, the longer the better.

My theory for poor R’s situation is this, somehow recently his 8 hour sessions weren’t adequate enough for him that he accumulated excess fluid in the body, to counter this, either he needs to increase his hours or the pump speed or perhaps both, but I have no idea what that will do to his chemical balance.

The F 5008, what a super machine it is, it even includes a self generating saline function, perhaps the only room for improvement is to add an oxygen function as well. Unfortunately, the best machine in the centre did little for him, as I noticed it is not even linked with a blood pressure monitor to check his blood pressure and heart beat constantly which would enable the machine taking fluid at a proper speed and sounding the alarm when is sense danger. I bet when the poor guy passed out his blood pressure too low and heart beat too slow, perhaps the heart rate was at 30 – 40 p/m.

In our dialysis training manual, if we were to do 4 – 5 and half hours, the dialysate flow Qd should be at 500ml/m, blood flow Qb at 300 or for 5 and half – 8 hours Qd at 300 and Qb at 225ml/m. Furthermore, if we notice blood pressure running low, feeling sleepy, or having cramps or headache, we should gave ourselves saline.

At home dialysing alone I bet R wouldn’t dare to let himself slip into sleep which would be extremely dangerous, he would follow instruction, when he felt drowsiness he would gave himself saline before he reaching the stage of fainting. But being at the centre, he may put all his trust on the nurses and lost guard and let himself dose off.

One other thing I believe was true is that both R and the nurses would all follow the instruction from the same manual and to the tilt. In the same session they would be aiming for the same amount of fluid to be removed, one would try doing it within 8 hours while the other within 6 hours, now you do the math.

The only difference would be at his home he might have fluid problem in his current condition, but at least he wasn’t endangering his own life. For poor R, I can’t see the end of the tunnel just yet, at least in the short term.

     - Haemodialysis Risks – Fluid Removal Method
     - Dialysis Blood Volume Monitor (BVM) - Probing me again 
     - Dialysis Blood Volume Monitor (BVM) – Lie Detector
     - Haemodialysis Fluid Paradox
     - The Risks of Haemodialysis Dose, Shit Happens
     - Dialysis and Fluid