Dialysis Risk — More is Less (sometimes)

Tuesday 2014-04-22 

Lately I feel sort of like a secret agent often doing things clandestine way. As I’m more familiar with the machine, my supervisor’s hawk eye was lax a little, though she still pricks up her keen ears not missing anything.

When they changed my treatment, initially I did suffer mental anguish and physical misery, I experienced headache, nausea, lethargy, insomnia, cramps, urinary infection, constipation, aching limbs, toes and ankles (totally washed out in other words).

Gradually I am allowed handling the machine on my own. Some changes have to be made to survive. The 1^st thing was to reduce the Qd pump rate (dialyser pump) to 300 ml/minute instead of the ordered 500. The trick is the Qd number doesn’t appear on the screen unless a series of buttons were pushed even then it disappears all on its own.

A while back starting on 28 Oct 2013 when I was taking perindopril to reduce my blood pressure, what it did was increased my heart beat. With a racing heart I couldn’t survive blood pump rate (Qb) 250 ml/minute and Qd 500 which are the standard rates for dialysis patients, I did Qb rate at 200 for a while. With 3 hours of dialysis I was afraid it wasn’t giving me sufficient clearance, so I increased to do 3 and half hours which is the limit for my bladder. I knew the above combination was alright for me, as I couldn’t change the blood pump rate when it appears constantly on the screen, and I survive poorly 250 Qb rate and 500 Qd rate combinations for 4 hours, the only thing I could maneuver was the Qd rate which hide inside the machine.  On screen I was doing 4 hours at 250 Qb, very normal indeed.

This change made huge difference to my life, I could at last breathe again, l was once again felt more like a human being than a miserable zombie, no longer felt so washed out and groggy, even my bowel became happier, I don’t want the nurses noticing my physical improvement, so after 3 hours of dialysis which is when the washed out feeling started, my beloved other half often remind me that I need to appear somewhat tired than I actually feel.

The second thing changed was the heparin dose, instead of taking on 6000 units for 5 hours at the very beginning and later 1000 units bolus and 500 hourly rate, I am now only taking on 1500—2000 units for 4 hours. If when bolus given was been watched I simply take on a little extra or else I may skip bolus altogether and the last hour heparin may also be stopped. With the amount of extra saline I’m receiving these days (about 300ml during each session) the dialyser is always white.

As for catheter lock, I’m given 25000 units and both my lumens are 1.9cc. Recently I’m using Tego to reduce infection risk which add extra 0.1cc, I was told to use 2.0cc to include the length of Tego which I found the end of lumen often clotted with blood, I’m now giving myself 2.1cc for arterial line and 2.05 for venous line. So far, they haven’t clotted again. The worst thing could happen to me is I might take on 750 units extra heparin, that’s the price to pay for safety. The sad thing is when I go home I was told for some reason I have to use Claxine instead of heparin which will be a bit of nuisance for me. I’d better enjoy while heparin still in use.

Beside these changes there are other things to manipulate such as sodium level and machine temperature to suit body ones, etc.

The last couple of sessions coincide with public holiday when the manager who has keen observance and sharp senses, and always sees everything and hears everything takes her days off. I was liberated, her foot soldiers only very involved with their own affairs, I even managed reducing dialysis hours a little. The fact is every bit of less dialysis I receive (to a point), the more beneficial to my wellbeing. With only 2 sessions of less hours (roughly 3 and half hours), my walking has already improved, the pain has reduced, although still hasn’t recovered to what I was before I enter this training unit, the change is obvious.

When these changes were made, my beloved other half was maneuvering the machine while I took on watch, we feel like a couple of spies doing thing under cover. By the way, at the end of sessions we need to set the machine back to order in case being checked, or simply turn the machine off and on again, letting it forget what it had been.

Haemodialysis – Unnecessary Complications

Friday 2014-04-04

Nurse J asked me today why I recently hadn’t taken blood pressure which was routine for patients before, during and after each dialysis. Since she asked, I had to show her. Even after a week my arm was still clearly badly bruised by the injection she give me last Friday, a huge patch of purple and blue which looked real bad as if I took severe belting. I also showed her my photo when it was inflamed and red. She looked uncomfortable. How could any nurse look comfortable after created such an a surrealist piece?

Basically, my entire upper arm was encircled with redness and bruises. I think she asked why I wasn’t taking blood pressure on behalf of her team, after a few days in a row not measuring myself they wanted to know why. I had already put down my reason on my daily record which they should read. Initially I didn’t want to embarrass them about my emergency trip, she must now report back to the manager.

One single injection could make such an impact surprised everybody. By looking at my arm the doctor at the emergency asked me how many injections I had. It is only bruises left now, when I went to the emergency it was in full inflammation. Where did the infection come from while it was done in a hospital and by a nurse?

Actually, today the arm feels not as bad as it looked, though I still feel a slight heaviness when I lifting my arm, I just want to play this thing a bit more.

A few days before she bruised my arm, I already stopped taking blood pressure and forged the numbers. My arm had been hurting for a while now, ever since one day on dialysis the left forearm suddenly started to feel tight and strained and I was hurting so much each time I took blood pressure, outwardly the arm looked normal and fine.

Each time I tell them what’s wrong, they have a remedy, most of the time it would make me felt worse. I can’t possibly even think telling them anything specific these days. Doing blood pressure again may bring the pain back as well. I’m not ready yet, after what they learned today, it would be a while for them to be interested in my blood pressure taking again.

Another thing happened today was nurse S was eager changing the dressing on my right arm on which access nurse M specifically written leave intact till 7^th April which is 3 days away. I mentioned my bleeding event and emergency trip the day after operation 20 days ago. After what had happened to me in this unit since I got here I have qualms in her touching my dressing just yet.

After dialysis she only peeled and changed the outer layer of the dressing leaving the inner layer intact. I was relieved. She is a clever woman and had already made the connection that I tolerate heparin poorly, and peeling one more layer off may lead to unpleasant things.

With a flip of finger today she even stopped my heparin half an hour before finish saying my dialyser always looked clear and white I may not need so much heparin. This reminded me how difficult it was for me to have the heparin reduced in the beginning when I found out I couldn’t tolerate it. It took me more than a month time, and it was the 4^th doctor I raised the issue to who reduced its dose. Albeit only to the level I could survive. I never dreamed to reduce the dose to the level I wanted which was sufficient enough to keep the blood flow without clogging the line.

While working with my drug chart, nurse S wanted to know whether I had my vaccine and I showed her my photo. She was practically gleeful that she wasn’t the one who injected me. By the way, she was the senior nurse who often praised J’s needle work.

Linking both of my incidents, the bleeding wound and the injection infection with heparin, before I left the hospital for the day I overheard nurse S talking to the manager that the super strength power heparin locking for my catheter was to blame for my bleeding and bruise.

Actually she had a bone to pick with the manager. I noticed the strength of heparin lock had recently changed from 5000 unit to 25000; My guess is, S preferred and had been using 5000, the rule in this hospital is 25000; I can’t know all the details, somehow nurse S was ordered to change it to 25000 instead of 5000, she wasn’t happy. Today she threw my bleeding and bruise back at the manager.

I’d been to so many different hospitals and used both neither had trouble locking my catheter. Personally I prefer 5000, when less can do the job why use more, but since when my preference mattered.

Haemodialysis – Aranesp, Haemoglobin and Iron

Thursday 2014-04-03

My aranesp is a convoluted matter.

Last year in September I went to the emergency and diagnosed as End of Stage Kidney Failure with Haemoglobin (HG) as low as 70g/L. During hospitalisation I received 4 units of blood transfusion and a catheter operation. 10 days later on Monday, 16 Sep 2013 when I checked out of the hospital, my HG was 126 and aranesp was prescribed for 100mcg p/week.

Before the 1^st dose of aranesp was due, I received my last unit of blood transfusion and my HG grew to 141, the 1^st dose was thus postponed.

A few days later my HG dropped to 112, doctor T was consulted and aranesp dose reduced to 40mcg p/w and my 1^st dose was finally given on Thursday, 26 Sep 2013, 10 days after I was out of the hospital and on the same day I also received the 2^nd dose of Iron and 1^st Iron on the previous dialysis.

Then I started moving about different satellite units for dialysis. As a vagrant patient I brought my aranesp along wherever and whenever it was due and I would remind the nurses to administer them to me. The problem with moving is that the drug order may often received in delayed time by the nurses, then there would be many phone calls between nurses, secretaries and doctors chasing drug orders, eventually I would get the medicine if not on the day, would be on following days.

There is a spoken or none spoken rule that renal professionals like to keep renal patients’ haemoglobin less than 120. When the level is above that the nurses would like to withhold aranesp or consult a doctor if one is available. When HG is low, in my case, because I move around no one really takes notice.

I had my aranesp of 40mcg p/w for a month in 4 different places, none of which was a straight forward thing. When the 5^th time due on Thursday, 24 Oct 2013 I landed on yet another unfamiliar centre S, my HG was 127 at the time, a doctor’s opinion was required and given as 40mcg p/month by the same doctor T who prescribed 40 p/w in the past when my HG was 112.

One month later I was sent to another centre P, the nurses refused to give aranesp without doctor’s order which for reasons that I had been to so many places nobody knew what was happening to me and my drug history. Nurse M said according to my own record I could have the drug, and I could inject it myself, just not by them, because legally they can’t.

Luckily the following Monday I had a doctor’s appointment where a drug chart was written which I brought to centre P the next day. But they still couldn’t give it to me. The nurses were busy working among themselves and other centres I had been to and tried to sort things out, after a lot of kerfuffle they still couldn’t give me the drug. Then I learned they need an Iron study in order to give me aranesp. I told them I brought a test with me which was done about a month ago and along with my other records if that could be of any use. The nurse was relieved and happy. One senior nurse said, “Remember always ask the patient.” Finally the aranesp was given.

Another month past, on Tuesday, 17^th Dec I received another 40mcg. Because I moved around, I missed out all scheduled tests enjoyed by permanent patients, my test orders were mostly the result of my clinic visits, by then I learned when would be good time to have my tests done. The following Monday, 23^rd Dec I had a doctor’s appointment, I arranged to have the test done Thursday 19^th Dec, my HG dropped to 101g/L after 2 months of 40mcg p/m.

I asked doctor L to review my aranesp which she did and prescribed 40mcg p/fortnight which is still valid today. Since then I had a few tests done, in all of which my HG were under 120, until 17^th March, my HG finally reached 123.

Iron and aranesp work hand in hand. My Iron infusion last September lasted me till January this year when I was moved to do dialysis in centre M where the iron protocol was different from other centres I’d been to, according to a test done on 19^th Dec my iron saturation was 49% and the protocol in M prescribed Iron for 100mg p/w while the other places either prescribe nil or every month for the same result.

 Iron of 100mg was given to me on 11^th Jan. 100mg p/w was prescribed for me and the order would follow me wherever I went, when my initial Iron order from the beginning was to follow protocol and decision was made locally, the doctor may not realise that there were so many different protocols when a patient is moving about town, this time order was specifically 100mg p/w.

Before the 2^nd Iron was due I had an unscheduled test (benefit or disadvantage being dialysing about town) where Iron saturation was 63%, Iron was withheld under any protocol. Another month later, Wednesday, 19^th Feb another chanced test, this time iron saturation dropped down to 27%, the order of 100mg p/w was back in.

The past yoyo experience tells me that 100mg p/w is a bit much for me. As now and always it is I who remind the nurses about my Iron and aranesp, I simply don’t remind them that often, for the moment I only remind them once every fortnight. It’s about 2 months now since I’ve done this which works quite well with my fortnightly 40mcg aranesp. My Haemoglobin is gradually coming into line my last test showed it was 123g/L, until the next test and some smart guy come along and mess it all up again.

Haemodialysis Complications -- Vaccine Injection and Emergency Trips

Tuesday 2014-04-01 

Yesterday when I got home after dialysis I was totally beaten, I had a headache, felt nauseous and tired. Even resting couldn’t return my energy, but a forced down sandwich with a large portion of ham helped a bit.

As my arm felt still sore and heavy from Friday’s injection, I thought better take a look. The needle point and its vicinity was bruised, from one single red spot of Saturday to a huge patch of redness, the upper arm was hard and swollen as if I were hit by a bat.

the blue dot at the top is injection point

10 minutes later I was in the emergency room. Registrar E felt my right arm and left arm and left and right again and again, and said there was a 50% chance of some kind of infection which was called Cellulitis and 50% chance it was a delayed drug reaction. I told him my other two hepatitis B vaccine injection didn’t gave me any delayed reaction at all and he went away to consult some renal people for my condition and drug dose.

In the end he gave me a packet of Flucloxacillin, a letter to my dialysis training unit and sent me home. I may hold on to the letter myself, as they are the people who sent me to the emergency in the first place and their changes to my treatment made me suffer more after dialysis, I’m quite scared of their creativity and fanciful minds.

Obviously the drug was effective, few hours later the bruise mollified down a little, I continued with the medicine. This morning the swollen was gone, the bruise dulled down a shade, the sore and heaviness would take a few more days to heal.

About 10 days ago, on Wednesday, 19^th March after dialysis I also ended up in the same emergency room. My wound from previous day’s operation oozed blood, within half an hour from a single red spot to one side of the dressing darkened.

Inadvertently I must somehow graze my wound while dialysing and the heparin I received on the machine made it worse. Holding my forearm and hand upright I was in the emergency within 10 minutes.

Neither the triage nurse nor the doctor dared to touch my dressing soon as they learned my wound was the result of previous day’s operation. The doctor consulted the vascular registrar who operated me and decided to send me home without doing anything saying things to the effect that unless the whole dressing was soaked and worse, don’t come back.

The bleeding temporarily slowed with my arm holding upwards, I was tired and my arm turned horizontal with which the bleeding came back. I called access nurse M who gave me her 24 hour number, who told me pressing my hand on the wound which I did for 20 minutes and it worked.

We all heard of the phrase “put pressure on the wound when bleeding” a thousand times, neither the emergency people nor the surgeon did this. When I told doctor L that my up held arm seemed helped a bit, she said, “Well, then keep on doing that”.

I delayed my hospital visit for more than 20 years, no GPs either, rarely taken medicine, eventually I ended up in the emergency and found I only got 3% kidney function left. In the past half a year, I made 5 emergency trips, 1^st one was too late and the rest I went as soon as possible.

The other 2 emergencies, aside from the above mentioned ones, one was my catheter was not properly dressed which resulted minor infection of the wound and other one was my jaw bled continuously due to overdosed heparin for a period of time which lead to platelet count dropping 50% within 20 days and APPT reading was 96 seconds.

The emergency trips are a bit much for me. I don’t have the intention to start a blog for "Emergency Day".  Imagine how long would that last.