Blood Pressure on Dialysis Day

Thursday   2014-01-30

10:30 this morning, the ball was kicked forward, I got a call to go to the hospital straight away instead of in the afternoon, it happens that there isn’t enough nurse in the afternoon shift. When I got there, my blood pressure was 189. After being measured for months, I am not so scared about it, since now I have some clue of my pressure’s direction.

It seems any kind of pace changing, be it good or bad, will set it up easily. It has a mind on its own and would react all by itself when situation calls for. No matter what my sanity tell the mind. Emotion is controlled by sanity, but blood pressure in my case is controlled by situations.

In the beginning of my treatment through dialysis, my blood pressure started to rise in a matter of two weeks which jumped from 130-140 to 190-200. Initially I was very scared not knowing the cause which made it worse. One day, I was reading something complicated and straining myself, I find immediately my pressure went up. I took notice of that, and I started to look at other things and situations, only to find that blood pressure even though it is a complex matter, most of the cause can be identified and managed.

Tension, stress, excitement should be minimised or avoid if possible. Since we are not living in a vacuum one can only try to do one’s best.

Iron Protocol for Dialysis Patient

Tuesday  2014-01-28

I was told to have iron today. I said to the nurse that I just took another test which showed that my iron was sufficient. She replied that she only follow doctor’s orders which is to give me iron every week. I knew that someone must have read my file selectively, not only my latest test was over looked, the date was wrong too.

I have to prepare myself for a hard battle. The whole story of my iron was relayed to her in details, that I went through 3 protocols, had another test done after the one she referred to, and according to which I don’t  need more iron and produced  my own copy of the test result. She took my copy and talked to her boss, they cancelled the iron.

They have all my relevant medical information at hand, I looked at them previously, I knew that they can’t be trusted blindly. So for quite a while I have been accumulating my private file and carry it around with me for event like today. Even with all this readiness, my blood pressure still went up. I think the treatment may save me while the process of seeking treatment may just kill me. What an irony. Today if I didn’t look after my own affairs, I would be overloaded with iron. My iron saturation is already 63%.

Later the nurse chatted with me, to my or not to my surprise that she had 3 patients who brought with them 3 different iron protocols which are different from hers.  She had to negotiate with 3 doctors in order to give patients their correct treatment, including 1 patient she tried to give more iron. I totally empathise with her. It is rather confusing to have too many iron protocols in one State. It is a nuisance for nurses and a dangerous practice for patients. It is high time that the science people take a look at the bloody protocols.

Wrong Blood Bath on Dialysis

Saturday   2014/01/25

On Saturday the wrong blood bath was used for me, instead of Calcium at 1.3mmol/L, 1mmol/L was used.  When asked about it, the answer given was that the correct one run out. However on the work sheet this incident was not even mentioned, 1.3 was recorded as usual, what get recorded on the sheet is very selective, something could simply left without a trace.

This is not the first time that wrong dialysis solution was used without the patient’s knowledge or letting aware of it’s happening. One day the incorrect potassium solution was used for a patient, after 3 hours on a 5 hour session the blood bath was changed from K2 to K1. I noticed the whole episode including the patient’s extreme uncomfortable behaviour, but I don’t think he knew what was happening to him himself. Not so many patients use K1. After the incident, he was treated extra nice.

Once  I was bathed with a wrong solution when my potassium at 2.9, and I felt terrible, and felt better only after the doctor let me swallow 2 chlorvescent dissolved in water which taste horrible. Nobody should take medicine to boost potassium level after dialysis, something happened when it should never have.

I suspect the same thing happened to me more than once, however, not just for one day but lasted until now. K3 bath seems more suited for my condition which was exactly what I was prescribed in the beginning. Since I go everywhere to dialyse, along the line perhaps one centre changed it to K2 which is a much popular bath which is also acceptable even thought not optimal for me at the time, the rest simply just followed what had been done, now I am stuck with it.

Right or wrong, something is easier changed than others, not the other way round.

I find that when something happened by mistake or not, is very easy, change it back correct or not, is very hard. The same also goes with other things. If they are convinced that fluid should be taken, not to take proof to be difficult. If the alarm of the machine sounds continuously, without identifying the real cause, pump rate could be easily reduced. But when one doesn’t feel too great and ask to reduce the rate, they would say low rate leads to bad clearance hence not to reduce without much fuss. If you are on K2, they don’t change to K3 easily. If you need a higher temperature, it is almost impossible to ask. As for the use of heparin, even it proofs that it causes thrombocytopenia they still won’t change to something else or reduce the dose easily. I heard one patient suffers severe itchiness because of it he was changed to use another drug. For me I still use heparin even it make my platelet count low, since it is invisible, it is hard to change. 

Haemodialysis risk, Iron Overload or Depletion

Saturday     2014-01-25

My iron infusion was never a straight forward thing. On 10 September 2013 I had my permcath operation, before and after which I received 2 units of blood transfusion each night. On 24 and 26 same month I had my first and second dose of iron infusion. 20 days later in another hospital I had an iron study which showed no iron was needed. 2 days later back at the mother hospital, two nurses worked on me, before I could finish telling one of them about my iron test, blood was drawn by the other for yet one more iron test – totally unnecessary. Logically, both tests are unnecessary if they read my file carefully, such wanton waste.

2 Months later another test was done which created much uncertainty. At the time I was dialysing under the umbrella of three different protocols, my iron infusion was to follow protocol. My blood result would lead to three totally different interpretations. Protocol 1 gives me no iron, protocol 2 every month, and protocol 3 every week. I was initially under protocol 1&2, I had no iron. On the 4^th week I landed on protocol 3, I had my iron, and my drug order was changed from follow protocol to infuse every week. When the due time comes, nearly missing out on my dialysis, among all the confusions I missed out on my weekly iron. Just before the 3^rd iron was due, I had my monthly blood test which include an unscheduled iron test purely by chance, according to which I would have no iron under all three protocols without ambiguity this time.

For the past month, if I had iron every week and every week after that for another month according to protocol 3 which would obviously overload me, or protocol 1, I would miss out my iron treatment completely, and protocol 2, I would get 2 infusions.  I don’t know whether I dodged a bullet or missed out on my iron. Being a food ball and got kicked around has some advantage after all, as a result I had one infusion which seems quite enough for me as my test showed. I don't envy the guy who has similar blood result as mine and landed only on protocol 3, who would be made an iron man for sure. I guess somewhere above decision has been made that I can’t be an iron person. There’s no need for another statue idling about. If my iron is such a mess, just imagine what happens to my Aranesp which it supposed to help to absorb. But that's a story for another day.

Iron Protocol for Dialysis Patient ...
http://dialysisday.blogspot.com.au/2014/01/iron-protocol.html

Dialysis Side effects, Muscular Tremor, Wash back and it's Artery Overflow

Tuesday     2014/01/21

Each time after dialysis I would feel this muscular tremor which vibrates in the pit of stomach up to the chest which would last until the next morning. The tremor is the kind that can’t be detected by the naked eye, is like how one feels after holding or clinging to something vibrating for some time, even after releasing it, one still can feel the vibrating sensation. After morning session, it doesn’t feel as bad as after an afternoon one. Perhaps that is because one move around a lot and doing things during the day, while in the evening one just sit and lie done, with quietness, one’s senses get acute. There is no pain with the tremor which is only quite annoying, but tapers off with lapse of time.

My theory for the tremor is this, the blood is moving in the body at a faster speed than it is normally run, and generated more cycles than the natural pace would do which disturb the muscle’s natural environment and pisses them off. It is rather like a gushing wind run through the body each time one dialyse, and takes time for the muscle to quiet down.

When I dialyse on pump rate at 200ml/m, I did not feel the tremor, the clearance rate is less than optimal, because of bladder stress I couldn’t last longer hours, out of necessity I have to change pump rate to 250ml/m even it gives me the tremor. I guess in order to live one need to be pumped up.

It is not all sad and gloom, today I am quite happy about the wash back. Nurse P helped boss C taking me off, she managed to give all my blood back, including the artery outflow which is rarely being done except with exceptional skill. Every time getting off, there is this blood in a line between 15cm-35cm in length get lost with wash back which I call orphan. Most medical people dismiss it as nothing, they always say, “You will grow back in no time.” Perhaps it is true for a health person. But I am anaemic and I do care. I dialyse every other day cumulatively it would matter, to me at least. So every time, I watch helplessly when the orphan gets lost and feel sad.

Losing the orphan is standard practice, only with exceptional skill and a kind caring heart can prevent this orphan from being. I am very appreciative whenever it is prevented, albeit rare.

I am happy today, it was a good run, nothing unexpected, and my blood pressure was stable. Stress free is a good thing. Amen to that.   

Dialysis and Football

Saturday      2014-01-18

It is like a merry-go-round. And yet again I faced the same question when I got to another centre, “What are you doing here?” They hadn’t the faintest clue of my coming. Imagine the stress, frustration and blood pressure, and the extra work created to those innocent nurses by the situation. It’s not fare to everyone involved. Even the nurses find it odd, they had never seen such a case like mine, visiting all centres again and again. They were kind and understanding and helped me settled in. The whole thing is not normal. Politic is at play.

Thinking about it gives me more stress and anxiety which is not good to my already poor health, like adding salt on wound.

Travelling to different places for treatment is not a pleasant thing. Most patients have hypo blood tension, my is hyper; most have limited urine, I can urinate like a healthy person; most can tolerate heparin, heparin cause me my thrombocytopenia; and most satisfy temperature at 35.5, my is higher; most have high potassium, my is normal (except when I was on perindopril). All these differences cause trouble and pain, and needed explained to each person I met in order to get the right medical treatment.

If they are understanding, there goes a good session. If they are head strong and treated me like most patients, it wouldn’t be a happy ending, there would be pain and discomfort and cause my body to react in such a way which setting the alarm off constantly. These would create extra work and annoy the hell out of everybody. Then the pump rate would be reduced and resulted in poor clearance rate, or even aborted session.

Again and again such things would happen or otherwise someone’s ego gets bruised.  Either way it is not a happy situation to be in. I am in such a quandary, one side is my health, and the other is a confrontation which I try very hard not to get into, and at the same time not to hurt anybody’s feelings. The most difficult thing is that most people are genuinely thinking that what they are doing are the best for patients, even though the result says otherwise. People simply doggedly follow some rules but not the other.

Permacath Stitches, Pink Lumen and Sloppiness

Thursday     2014-01-16

When my permacath was five weeks old, I noticed the flesh around its entrance was a bit raw and pinkish, each time a new dressing was on I felt the pain of tugging and pulling now and then, I’d asked nurses weather I was in the risk of infection.  I was always told that it doesn’t matter. As I detected no fever on me, I was reassured. But the pain always nagged me.

One day, another seven weeks later, I met nurse L, thanks to whom who identified that all my trouble was caused by the permacath stitches which I didn’t know that I had, which should be removed 6-8 weeks after operation. The stitches were duly undone, from that moment I was free from my woe, no more pain, and the pink disappeared gradually. One has to wonder, if it is standard procedure, how come only one person know? During this whole time, including doctor P who’s solution was only to prescribe some cream which did not help much at all.

Another curious thing was that sometimes I find my catheter lumen is pink. I seek the net, couldn’t find an answer. My observation from enough number of times which when it happened to me, let me form the conclusion, that this is due to sloppiness or poor eye sight. Each time when the lumen’s pink in colour, they were always locked by such person. I strongly recommend that certain medical personnel over 45 years of age take a regular eye sight test.

Careless person does appear from time to time. It happened to me twice that the stopper of the catheter was not screwed on properly and felt off, which gave me quite a scare. And another time nurse X even forgot to sterilise the catheter before putting me on. Normally, when such careless things happen, if it were discovered, it is already too late. Since what happened to me so far was not life threatening, I let them pass. But still one can never be sure of such a thing, one can’t help being scared and stressed out in silence.

As for today, it went as usual. I am at their beck and call, prearranged schedule can be changed easily. At 8:50am I was called to get to the hospital in half an hour instead of afternoon, luckily I live only 15 minutes from this particular hospital. Such is my precarious time table when dialysing about town. The rest of the day went without too much drama. The last few days were all above 40 degree, everybody are happier at work where one can't feel the heat.

Dialysis About Town

Tuesday    2014/01/14

The day started on a positive  note. On the way to dialysis, a prescription left by doctor M at the pharmacy in the mother hospital was picked up without glitch. On Saturday the doctor couldn’t get the proof from Canberra, the record showed that he left it there bright and early Monday morning. For his diligence, I salute him.

Then the day went pear shaped. When I got to dialysis centre P, I find that I was not expected. Obviously the knowledge of mine coming was lost somewhere in the communication tunnel. Earlier in the day, some old equipment nearly caught fire, and the power was off. There was chaos. They were not thrilled to see me, my surprise appearance only added to their woes.

After some phone calls, I was let in and told where to go for the next couple of times. Half way into dialysis, the power was off again which caused more inconvenience. But that is a story for another day. Before long, when nurse S tried to send my med info to centre S where I was going next, only to find out that they didn’t know I was coming either. Needless to say, there goes another round of phone calls and haggling. I was told once more of the new direction. Hopefully this time the plan will hold.

One has to cop a lot dialysing about town. I used to come to P for a month and half which I enjoyed very much. At least in here I wasn’t getting the third degree for my sensitive body and quirky medical treatment as elsewhere. At P I could dialyse in peace and tranquillity. But suddenly one day, I was out, the reason given was sketchy. To this day, what evoked the eviction was a mystery to me. Hand on my heart, I know I didn’t do anything wrong. One would never know that a sick patient has to encounter so much politic, over current and under current seeking medical treatment.

Coming back to P brought back a lot of memory, this night sleep escaped me.

Dialysis and Fluid

Saturday    2014/01/11

Told Nurse D UF goal is zero, had been for 3 months (previously when fluid was taken, I had cramps and my limbs stiffen and locking up, the pain would last more than  24 hours), with much difficulty and involving a doctor, UF zero was on the machine. Every bit of situation would fluctuate my blood pressure which is hyper sensitive. Today is no difference.

In the end of the session, after toilet, my weight on the scale was 100g more. With good intention, for the gained 100g, D gave me a severe lecture on the importance of fluid taking.

Mind you, the fact was, as usual, the fluid math is this: the prime, the wish back, the permacath (catheter) saline flush injections and the drink and sandwich I had, together would weigh at least 500g. Facts show my body still has the ability handling fluid, at least for now.  The urine excretion rate for me on the machine was at least  3.55ml/hour/kg, actually if I was given 1 more hour, the 100g would be out. By the way, the scale incremental is 100g. One would think reasoning with people of science would be easier, I have to find it out the hard way.

Dialysis Temperature

Thursday     2014/01/09

Told nurse B to set machine temperature at 36. B said 35.5 for everyone without even looking at my record. 2 hours in, the back of my body – torso and legs start tremor and vibrating, felt miserable. Called nurse C asked bringing temperature up. With much fuss, temp’s up to 36. 

Damage’s done, blood pressure was up to 218 and tremor lasted till the end, albeit alleviated. Stumbled home, feeling extremely light headed like never and lay in bed for the rest of the day.  Took an hour to bring pressure done to 150, and not until 6pm for it to drop to 137.

Actually, the night wasn’t easy either. After dialysis-I mean every single time, my chest and tummy always feel a light tremor kind of thing which run steady on until the next morning.

Missed a dialysis session

Tuesday     2014/01/7

Got up at 6, drove for 40 minutes to hospital. Once there, nurse  told there was confusion in the office, no place for me, had to wait for another patient to get off in 5 hours.

Doing the math, up at 6, wait for 5, another 4 on the machine and hit the rush hour traffic home. Out of home all day without place to wait and lunch, before my kidney kills me, the prospect of the day would.

Thank you very much nurse, and head home.

By the way, the treatment in hospital was haemodialysis, not a headache.