Hurdles to Home Dialysis and Effects of Wrong Calcium Bath

Wednesday 2014-02-26

Changing patients’ treatment orders without clinic consultation is the first hurdle for my home dialysis training. Today I was fuming when they told me that I have to increase my treatment hours, otherwise they will kick me out. Increasing the hours alone wouldn’t make me this angry, when combined with what happened to me since I entered this training centre made my blood boil.

The first day I came to training I found they changed my calcium bath from 1.3mmol/L which I used for my entire treatment in the past 5 months, to 1.5mml/L without even letting me know. When asked about it, was told that they don’t have 1.3 ones. Out of politeness I let it be.

Afterwards I begun reading about Calcium bath and understood that it would be a complicated thing, as I’m taking Calcitriol and Calcium supplements. What side effect it will bring and how strong the effect would be is a question. Being constantly reminding nurses of their errors inadvertent or otherwise throughout my treatment really tired me out. I decided to wait and see.

After the third dialysis on Calcium 1.5 bath I began to feel the impact. When I got home that day I hit bed straight away, my energy totally drained feeling light headed and nausea. Arriving home about 2pm, lunch hour had long passed. To prevent further harms I dragged myself out of bed to have lunch, and I was shaking uncontrollably. Quickly finished lunch I was in bed again. After hours of rest I felt better, but the nauseating sensation remained came and went even lingering to today. That night I couldn’t sleep, went to bed by 11pm, at 3am I was still checking the clock, only when dawn came I slept a little.

On that day I did a blood test. The next dialysis on Friday the result came back which confirmed that the changed C bath did done harm. My phosphate level which was steady for the last 5 months under 1.28mmol/L shot up to 1.81mmol/L. My PTH gradually came down from 62.9 to 25 was reversed up to 27.6pmol/L. I communicated my concern to nurse S who agreed to change the Calcium bath back to 1.3 on Monday. But the damage was done, it need time for the pendulum to swing back. As a result, I came in today still not fully myself feeling tired and a bit nauseous. It was under such a circumstance that I received my ultimatum.

The first thing before all this learning or training began, they preached how good home dialysis would be which may very well be true, but not the way they are doing it. Since day one I haven’t had a moment of peace in my mind, rather I’m all stressed out. They have created many tense situations which made everything worse for me, and especially that I’m suffering from anxiety disorder which my blood pressure level is closely related to, had gone all over the place

My zero UF goal have been giving me trouble with the nurses in my whole dialysis history, here being the worst of them all. I showed them my past record which I copied from various centres I’d been to, which they should have in procession thenselves, they saw I went to the toilet after each dialysis, they watched the scale, nonetheless they still humiliated me with a borrowed BVM machine to watch my fluid movement on screen.

Today they brought this afore mentioned issue up and accused me of telling them what to do and that I was making out treatment order myself. I wonder do they ever read the information of my past record; really care about how patients feel; or perhaps they only know just to follow one set of order without looking (I don’t even dare to use the word study) at my whole history or hearing what I have to say. Do most of them just have tunnel vision can only read just one test result, one line, or one word?

Initially I put all my trust in them, only when I detected many errors that I started to put my guard up. If I let then have a free run, I would be taking more than 1 litre of fluid each session which would not only dehydrate me, but also took my residue kidney function away; the heparin unchecked would deplete all my platelet; in this place would add on hypercalcemia and calcification, high phosphate, high PTH, higher blood pressure and nausea.

Today I even got more proof that the C bath change had done harm, since I came in feeling unwell, they took blood test which showed that my phosphate dropped to 1.48 from 1.81 a week ago only after one session of correct C bath.

After the bath correction I thought I could relax a little, my blood pressure today even dropped to 140, which was put up by the wrong bath to around 170. My blood pressure is a complicated matter, at home it stays between 110 and 140, for the four times on the wrong bath it was raised to 150-170.

After their ultimatum, I stressed myself haggling, explaining and demanding to see a doctor before any change in treatment is even considered. The manager promised to make the appointment. I now need to prepare myself yet for another battle. The session finished by raising my blood pressure to 212 and counting.