My Kidneys, My Home, My choice ?

Friday 2014-02-28

I was incandescent with fury! On Wednesday I was threatened being kicked out of home dialysis programme if I didn’t agree to have my treatment changed to what manager nurse L thought was medically right for me and was promised that my treatment remained as status quo and continued learning and dialysing in this centre until I had a chance to see and consult a doctor.

Today all this had changed, the threat became a reality. She bulldozed me out of the centre sending me back into the system. She had problem with the words “kicked out“ that was used by me, no matter what euphemism she preferred, the fact was fact. Sorry that I stepped on a toe and injured her precious feelings. But what she had done was making flippant decision that sent an anxiety kidney patient with complicated prescriptive treatment to limbo just to satisfy her psychotic ego, coming to her office each day executing her little managerial power and playing with patients’ lives. Only because last Wednesday on surface I seemed to have won on our encounter, she worked up her vindictive mind scheming up this tsunami for me.

She has absolutely no heart, said it was for my own good and played politic with my feeling and my health purely to satisfy her own ego. If she really cared about a small patient like me she would have heard what I said and how I felt physically and mentally. I have been on the current treatment for the past 5 months and which worked well for me and made me gradually better. Only when it were changed that I felt worse. Such thing had already happened a few times.

To through me back to where I came from to further endure uncertainty and stressful situations will do not do an iota of good to my health and could only harm me.

She made an appointment for me to see a doctor on 17 March and fully understood what the next two weeks will do to my mental and physical wellbeing, and yet to show that she is the one who is in charge and have the final say, she throw her so called “care for patients wellbeing and that was what her reason being where she is” in the wind.

The only object can be achieved for me to run about town again is that patients have to do things her way or no way, be it right or wrong, to the benefit or the detriment, whichever way she doesn’t care. There are people like her who say one thing and does another, her purpose here is to earn a salary doing her job and climb the corporate ladder. What care for patients’ lives, wellbeing, those are just words, for her they are deprived of real meaning.

It is precisely to avoid people like her drove me into home dialysis. Next week there is a conference promoting home dialysis with a slogan as “My kidney, My choice and My home”. What a joke that is, the way she is running things is making a mockery of the whole thing.

For survival, to be responsible to my own health and wellbeing she forced my hand. The only rational thing for me to do was to succumb to her demand and renegotiate my treatment on her terms without a medical clinic consultation.

Actually she was the person who changed my Calcium bath (for whole story refer to my last blog) without doctor’s prescription which made me feeling terrible and the wrong bath she gave me mucked up my blood test result, my health temporarily went backwards was caused purely by her. I haven’t heard her admitting any kind of mistake being made, an apology would be unimaginable.

A simple slight reply “we don’t have” was all I got and that doesn’t cut it. It was medicine that she was using. Science is an exact discipline, not bush mechanic. If she were a responsible nurse she wouldn’t have want only changed patients’ prescription without adjusting other related medication in the same time.

One other incident was the other day when she was taking me off the machine she didn’t clamp the artery catheter properly which lead to my blood back flew into the artery for about 13cm in length, such incident happened to me only once before. When I noticed the abnormality and asked her how could I prevent such thing from happening to me when I doing it myself in the future, she had no guts to admit what wrong she had done, but taking patients as fools and gave me a load of crap and diverted to other things. Making error is one thing, we are all human, what I can’t accept is covering it up and making stories.

How can I trust such a person, let alone making my treatment orders?

Our world is not perfect, for survival one can’t cut off from society, from people like her and have to swallow a lot of shit.

Wish the 5th Australia and New Zealand Home Dialysis Conference a success!

Thursday 2014-02-27

I was threatened if I didn’t agree to change my treatment I would be deemed unsuitable to do home dialysis programme and face being kicked out.

Why can’t I just learn how to do dialysis and do it at home under my current treatment regime which proved to be working well so far and have been making me better gradually?

I sincerely hope the training staff could facilitate patients instead of creating unnecessary anxieties and stress.

"My Kidneys, My Home, My Choice" ?

By the way, I wish the 5th Australia and New Zealand Home Dialysis Conference a success!

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.

Dialysis Blood Volume Monitor (BVM) – Lie Detector

Friday 2014-02-21

Dialysis risks, I was put on lie detector today.

Hooked up with Fresenius 4008S which is comparatively a modern piece of equipment with a blood volume monitor, my body fluid was put to the test. After they’ve seen my blood pressure, my weight before and after dialysis and toilet, they still need scientific proof with the specifically for me borrowed BVM, which I called a lie detector. Today is the second time I was put to test on a machine with BVM since I started roaming around various centres. The funniest thing was that Centre P which have the most advanced machinery was the least concerned about my UF zero goal and I was allowed to dialyse in peace.

The medical professionals I met, most of whom like to link high blood pressure with body fluid retention, the same is true with the current training centre where I am now.  I hope after they watched the screen they got what they want. By the way my UF goal remains at zero.

Ironically, my fellow training patient would benefit much more from the machine than I did. The other day she finished halfway because of severe cramping. If the machine were hooked up with her, the speed of fluid taking could be monitored, and experienced nurse could prevent the patient from loosing fluid too fast, thus causing things such as cramps or hypotension.

Note: 3 months after this, I was put on BVM again ...
                                 "Dialysis Blood Volume Monitor (BVM) - Probing me again "
   

            

Haemodialysis Access Catheter Dressing and Stopper – the good, the bad and the ugly

Wednesday 2014-02-19

Last week I’ve had the best dressing ever, which lasted a whole week without being retouched for six days, and can really be said waterproof. For the entire week it stayed snug along the contour of shoulder, chest and armpit. In the past 5 months I must had about 30 changes, none of which stayed in shape or in position for long. The quality of dressing material has the following different types and the skill of users varies, the chance of having a good dressing is to land in the hospital with good dressing and a capable nurse, in my case is 30 to 1.

Material wise for the dressing, hospital M has the best one, sturdy, strong, and smart, a transparent plastic with the inside loop lined with net ventilating adhesive fibre. Together a blue paper covered sponge button lined with antibiotics is used underneath the dressing circling the catheter entrance covering the flesh. When it is used properly should be waterproof, but due to my queer catheter position perfection is rarely achieved and hence need retouching after getting home on dress changing day.

Another type which is also commonly used in some hospitals is also made of plastic without the accompanying blue button, the looping fabric is not sealed with plastic, the single layer adhesive soft fibre doesn’t stick fast enough, with moisture especially in summer when one often sweat, it is likely to unstuck and the seal opens easily.

The third commonly used in other hospitals is the worst of them all, a plain, sandwich rapper like plastic with adhesive edges which curls and rolls back up easily, and before one gets home the dressing is already shrunk in size. When this one is used with the button proofs to be even more problematic. Underneath the dressing is airtight, the plastic clings to the skin, if one perspires the sponge button sucks up all moisture, fattens up and moves away, left the blue paper on top sucked to the catheter entrance point to the flesh. The sucking power looks so strong to me, when such things happen I often fear that this little piece of paper could be sucked into my flesh, however, this has not yet happened so far, but scary nonetheless.

With all the dressing having adhesive issues, I always keep rolls of sticky tapes handy, the strong ones are most preferable, even though when peeling them off often left the skin pink and raw with blood spot visible, part of the flesh could literarily torn off, one need to rotate sticking position to avoid repeated injure.

One other thing needs a mention is the catheter stopper. There are two types are in use, a short one and a long one. The short one is simple, tooth paste cap like flat top screw up stopper, 1cm in diameter, 0.8cm in length with vertical ribs of 0.3cm apart, easy to use and wearer friendly.

The long one, 1cm in both diameter and in length with vertical ribs of 0.1cm apart, the tip end stretches on to a thinner rod  of 0.8cm in length and 0.7cm in diameter with one single screw line at the tip which when touching the skin felt rough and scratchy, and its length proof to be cumbersome. The wearer can’t sustain a close or bear hug which would be dangerous when the rough edges is pressed against flesh. The closed ribs on the stopper are not friendly to the fingers when screwing it on. The short one is not flawless either, the reason today I had both a short and a long one on was because the other short one rolled away on holiday.

The Risk of Blood Clot for Dialysis Patients

Tuesday 2014-02-18

Dialysis patients face many kind of risks, one of which is inappropriate catheter locking.

I saw a blood clot the size of the thumb nail flew out of my artery line at the start of dialysis yesterday. I would very much like to learn about its cause and how to avoid from it happening again. The answer given made me felt even more confused and scared. The rest of the session went without further incident except that after wash back the artery line was reflowed with blood from the catheter outlet down for about 13 cm in length which is a totally different story and should be left for another day.

I’ve seen before for a few times that the lumens dangling in front of my right chest were pink in colour after being locked. None of the times I got a satisfactory answer and I had similar fears back then. Today’s scare was not only more but intense.

Normally before dialysis 3ml of mixed heparin and blood is drown out from each lumen and 10ml of saline pushed back in, then blood starts flowing out. It was at this point the blood clot appeared. How did it come about and where did it come from? I know the catheter out of the body have two outlet, inside the body it appeared as one single line with a divide to make it two individual channels, the blood would be drown from the same blood pool. How come after the saline for both lines were pushed in the clot flew out?

As expected in the end the dialyser was streaky. I was waiting in the past 24 hours if I needed to go to emergency and couldn’t help feeling unsecure and full of anxiety and fear wondering about my venous line which is where the blood going back in. 42 litres of my blood was washed which means the blood had been processed ten times and over, logically I should feel safe.

All I wanted to know was if the clot had anything to do with the way the catheter was locked or perhaps the amount of the heparin used was correct. I deserve a straight and honest answer instead I got garbage and a longwinded excuse.

As I didn’t get a straight answer, being medically illiterate I simply can’t help thinking about the venous line, other dubious locking and other inappropriate practices, doubting the whole medical system. No matter how skilled and careful a person can be, human errors are not totally avoidable. Making error is one thing, not having a procedure to prevent locking procedure not being followed which would endanger patients lives is another. One has to wonder why not such measure not in place already for the safety of patients.

Dialysis -- Heparin Overdose and Depleted Platelet

Friday 2014-02-14

On 17 Oct last year, five weeks after my kidney treatment began, due to continuous gum bleeding I ended back at the hospital in the emergency room after got home from the 17^th, an afternoon dialysis.

My platelet that day was 78 dropped to half from 149 on 10 Sep 13. I was staggered by the pace it dropped and panicked. In fact it didn’t just drop within one day, instead it was a downward slope, in between I had other tests done, and already noticed the trend and raised the issue along with some other downward figures and upward trend for other matters to doctor T. The emergency room was an inevitable path.

I was arranged to see doctor T again, again I voiced my concern and the fact that I ended in the emergency confirmed my suspicion that I suffered from heparin induced thrombocytopenia. We had a heated argument, and she brushed me off and cited her busy schedule and walked off.

While I was sitting in the corridor and catching my breath, the head of renal department, the renowned professor P happened to passed by, I recognised him from his photo in many of the hospital brochures. I told him about my story, he was not entirely convinced. From him I learned that the dangerous level for platelet was 50 and got the impression that before I reached that point nothing was to be done for me.

I told him that in such case, I would like to do dialysis only twice a week which would keep me alive and would not be too much overdosed by heparin. There’s no way he would agree to that. But I made up my mind. In the end he agreed that I could skip Saturday and arranged for me to see a doctor coming Monday.

I went to the appointment full of hope, only to meet the junior doctor J with a closed mind and who learned doing thing just one way. She too wasn’t convinced about my heparin story, instead she told me that it could be a one-off thing, that it could be the result of a careless nurse who didn’t lock my catheter well and leaked heparin in my body that caused my low platelet count. All indications showed she was giving me a load of rubbish. I was talking to a wall, talking more was wasting both her time and mine.

I told her that I would like to do dialysis twice instead of three times a week. She strongly advice against it, saying no way she would agree to such a thing. The only thing she did for me was ordered a blood test.

The next day, after 115 hours without dialysing I took the test. My theory was proofed the platelet came back to 142. Without doctor’s treatment order I did dialysis twice a week for a month. During which time I had a fistula operation, the blood test just before operation showed my platelet was 113, coagulation test APTT at 24 second, on the day I was in the emergency five hours after dialysis APTT was 96 second, and for a normal person it is between 22 and 32.

If I didn’t take measures myself, I wouldn’t be fit for the operating table, most probably I would be in the emergency long before that. I was lucky the other day that I only had my gum bled. Imagine if it were somewhere else.

I did see another doctor once, but judging from the mannerism, it’s seems she and other previous doctors were from the same school, I simply hold my tongue and bite my time. My luck struck when the third time I saw a doctor. I guess this is the bright side for a public patient that you don’t get stuck with just one person. Doctor R was more experienced and most of all had an open mind, listened to my story and read my tests, unlike her predecessors read only one single test result. She changed the heparin dose from bolus 1000 unit, hourly 1000 unit  to bolus unchanged, hourly 500, which means for me, instead of taking 8000 p/w doing 2 dialysis now I can do 3 dialysis only taking on 7500 p/w (excluding catheter heparin lock).

The new regime is not optimal, at least my body can tolerate. Before the dose was changed my platelet was 157, after one month it remained unchanged at 157. Obtaining doctor’s order wasn’t easy, implementing it proofed to be even harder.

The nurse seemed unsure about the new drug chart, and consulted her boss. Together they decided to go it slow, changing the hourly rate to 800. That sounded fair enough. After a couple of days they had no intention to reduce it further. In the mean time a visiting doctor P happened to be there one day. She asked me about my case, and seemed genuinely concerned. How deluded I was. I raised my heparin issue which back fired and created more trouble for me.

She looked at my last test result which was after I did dialysis twice a week for a month, she had no time for my whole story, and concluded that my platelet was ok for a dialysis patient, but she did had the decency to call my mother hospital. The person she talked to was the afore mentioned doctor T who had nothing to do with me since our last encounter, naturally responded that there wasn’t any heparin issue, that my platelet was fine. They were looking at the same single blood test result without knowing how the figure came to be. My heparin dose was changed right back at bolus 1000 and hourly 1000. I would have none of that.

The next time before dialysis, I told nurse C about my heparin dose thing and showed her the work sheet of my doctor’s visit which was copied and given by doctor R who reduced my heparin dose and about the moron who increased it back. Luck was on my side that day. The attending nurse was clear minded, decisive and knew how to read doctor’s instructions. Without further a due she gave the heparin as instructed and personally wrote out a clear chart. To this day no matter where I went, the same order was followed. One thing I fail to understand is that heparin is just an anticoagulation agent, so long the line is not clotted, why do so many doctors this gung-ho in using more rather than less, when less was already adequate.

Getting the correct treatment is not an easily thing.  From the bottom of my heart I thank doctor R who reduced my heparin dose and nurse C who implemented it. Weren’t for them I couldn’t do three times a week, skipping sessions without doctor’s treatment order was not an easy life to live. One needs to find all sorts of excuses not going to dialysis and in the process trying extremely hard not to annoy the people who were involved. It was such a stressing period of time. Even though I know my platelet could be better, I am not that greedy, so long as my body still could endure, I am content and still overdosed.

Dialysis Football Season Is Over for Now

Tuesday   2014-02-11

Adieus various hospitals and centres, today is the last day I go about town dialysing, this Friday I am starting home dialysis training. I’m tired of being sent everywhere, copping with last minute changes and fighting every inch of the way not to get the wrong medical treatment.

Starting five months to the day, I have now dialysed 61 times at 6 different places for repeated rounds, amounting to 17 switches, 54 nurses attended me (As a permcath patient sometimes on and off the machine I got two nurses.) excluding those who did blood pressure for me only. I’ve never met this many people so closely in such a short amount of time in my life.

I should be given the job of quality inspector. I know how each place is managed, the personalities of each person, their skills and working ethics and I even know the quality of their medical supplies. I can start my dialysis Guinness record for a patient who visited for repeated rounds to most centres in the shortest period of time and experience most changes in schedules and meeting the most number of medical staff.

One of the reasons for me to learn home dialysis is to avoid people meddling with my treatment. Today I met the training nurse, the first thing she mentioned was to make changes which is not the kind I would like. I hope I made myself clear that I’m not interested in the changes she was suggesting. In fact I only want to learn how to operate the machine and needling myself. I’m not relishing the thought of more battles.

It is not easy going through so many conflicts and maintaining a cordial relationship with the people one fought with. But it can be done most of the times. Humans are such complex creatures, when goodness in them is encouraged could emerge, vices unchecked knows no bounds.

Last Wednesday I got a call from the mother hospital M telling me to go to hospital D to dialyse in the last moment. As usual I accepted without a second thought. After hanging up the phone I suddenly remembered that I need to return my ECG halter to M and called them again. After checking their roster they said I could come to M to dialyse where I return my equipment.

While I was dialysing I saw the roster woman and thanked her for the consideration. Hearing my compliment she was obviously pleased and she went back and personally wrote out my schedule for the next appointment which had never happened before (even though the schedule didn’t hold, the thought counts). In contrast to this, previously each time we met, she always looked blank and walked right pass me as if I wasn’t there. And for a few times that I went to other places where she forgot to let people know of my coming, she flat out denied knowing anything. I heard every one of the conversation on the phone. She made it seem that I was demented and showed at other dialysing centres without being told to go there in the first place. Anyway, that was the past.

Back to the story of last Wednesday, before I finished for the day, she came again to me, so once again I showed my appreciation for the special arrangement. Most of times when one is nice to others, others will nice you right back. This time she thanked me for my understanding and cooperation being sent all over town and copped many changes. In her heart she knew what she had done to me. Everybody knows that squeezed wheel got oiled. I never made any complaint and accepted what they dished out silently. They simply took things for granted and abused my good nature and accommodation.

If I‘m not wrong I would think they intentionally drove me to home dialysis. It was the same roster woman who sent me on my roving trips out of vendetta. That was two weeks after I started dialysis when my condition wasn’t even stable yet.

Doctor prescribed 2 cartons of 8 x 100ug of Aranesp. Before it was even unpacked the dose changed from 100ug to 40ug. I was told to throw away the 100’s and buy another batch of 40”s. It cost more than a few pittance (without prescription it would cost thousands of dollars). I don’t have money to burn, besides it is such wanton waste. There must be other ways to solve the problem. After much hassle this roster person reluctantly swapped one carton for me with the hospital ones. After that incident I started my roaming about town. I’m glad today was the last day of my round.

One last thing needs a mention, as what I was expected last Saturday the theme of my changing schedule played to the very end. This morning 7:30 I received a call asking why I was not arrived at D for dialysis. I told them that my last instruction was to go to M in the afternoon. Ten minutes later they called again saying that M has no place, that D it is. Luckily I don’t live too far from D. Thus bring to the end of the football season, being kicked out by the professionals.

Dialysis - Overdosed by Good Intentions

 Saturday   2014-02-08

Another hospital another déjà vu, I could sense that today’s nurse was just another strong minded and full of presumptuous type. Nurse S insisted on taking fluid from me or at least the so called what’s given – the clichéd 500ml. Why nurses like her refuses to just follow the chart, follow what’s been done previously as on the worksheets sent to her, instead they all try to use their own heads. I detest confrontation and dreading hurt their feelings, but self preservation forced me on the battle field. By now I am too tired and have no time for educational sessions, and asked to see the manager. She came in with her own question and wanted to know why I only doing three hours.

There is a list of reasons for me doing just three hours, but I only told her the one which would stop further probing, that is my bladder couldn’t handle more than 3 hours, that I had been doing 3 hours with zero UF goal for 4 months. After some frustrated haggling everything was settled exactly as what it was should be which was a repeat of my last session and many more before that. Needless to say this can’t help my blood pressure. The tone they used was full of accusation, treating me as if I was a criminal.

Nurse S disappeared with my file, I was sure she was busy with her literary work, recording the whole episode. For fear of being read by me, she hided the file somewhere without putting it back to where it usually lay which is on my table or on the machine. I knew this was true because every hour patients’ blood pressure needed to be checked, that when another nurse came and did everybody’s in the room except me, and she looked for my file here and there again and again and couldn’t find it. Certainly she couldn’t ask me where my file was, I was just sitting on the chair and going nowhere, beside that would look unprofessional. Without my file to record things on, I missed out my blood pressure check which I was not particularly fond of, the pumping of blood and squeezing of my arm is not a feeling to be enjoyed. After finishing her report nurse S did came in and checked my pressure for later hours, she only brought along a scrap of paper to record the numbers, never the whole file. All other patients had their files where they should be.

When dialysis was finished, she followed me to the scale and read out the weight and encouraged me to go to the toilet. I didn’t see any door with a toilet sigh, and she let me to the end of the dialysis unit and opened a plain looking door without any signage on it which I suspected was used by the stuffs. I did my thing. She then followed me back to the scale again. My weight was 500g lighter than before toilet and 200g lighter than before I came in today before dialysis. She was still sceptical and asked me whether I was taking diuretic medication, which I certainly did not. And we said our good bye.

For certain people it is not easy to have an open mind and drop all presumption and prejudice. Most of the time, such persons do what they do initially out of good intentions and diligence to their job and duty. Very often they could only achieve the contrary to their desires. Certainly there are others who do what they do simply as their duty and earn a salary. It never occurred to them that their actions could hurt others.

A part from the above drama today is the most confusing day for my next dialysis appointment. This morning 10:30 I got a call from mother hospital asking me if I knew where I would go next Monday. I told them that I normally dialyse on Tuesday sequence, that today as it was Saturday I was to go to centre D in the afternoon. They checked their roster and told me to come to centre M next Tuesday. During dialysis today the manager at D told me I was to come to her unit next Tuesday and I told her my morning phone call. She went checking and told me that all sorted, I was coming to her unit. Before the day ended, the secretary came to me and told me I had a choice to go to either M or D on Tuesday, I don’t think they knew what they were doing. I wonder if they can read their own roster. To play along, I choose M, at least the battle there had been fought, and I know every nurse there. In the mean time, I just have phone battery charged, who knows what’s going to happen on Monday or even on Tuesday for that matter.

Dialysis Daily Body Weight and Urine Chart (Note)

Thursday 2014-02-06

Weight is not a constant number instead it fluctuates between morning and night and from day to day.

Even when I was very sick I managed to keep my weight at a decent level. But my urine is totally another story. Two years before my health deteriorated to the worst point I was always very thirsty and had to drink much water both day and night. Passing urine was never an issue. In fact the problem was I always passed more than I drunk. At the worst point I would drink easily more than 2 litres a day and pass out more than 2-3 litres of fluid. As a result I never suspected that I had kidney trouble until the doctor told me. How naive I was and still am. I went to the hospital because of my heart. My palpitation was so severe that I could not even close my eyes to sleep.

When I was young and healthy, I rarely got thirsty, drunk very little water and hated soupy stuff. I never formed the habit of habitual drinking, only drunk when I felt thirsty. Since I started dialysis gradually I begun to drink less, after 2 months of treatment my drinking habit returned, I no longer feel as thirsty as when I was previously. Once again now, I only drink when I feel thirsty, about 1 litre a day and seldom need to drink at night.

My urine habit is that I pass about 5-6 times per day and between 4-6 hours at the quantity of 200-300ml each time during the day and 300-500ml each time during the night, and each night is about 600-800ml in total. My weight fluctuates with my intake and passing out, but not exactly equals to it, especially in the morning. My morning weight rarely stays the same as the night weight minus passed urine, and most times I lost count of about 200-400g of my weight from the previous evening. I don't sweat at night.

The difference between morning weight and evening weight could be as little as no change to 1.7kg and averages to 0.7-0.9kg. Dialysis day the difference is the closest about 0.4kg, the next day the biggest about 1kg, and the day farther from dialysis the difference reverses back to between the two extremes. It seems nature has a stronger pull, without the interference of the artificial kidney the body tend to get back to its own rhythm.

There is a reason for the varied weight difference between dialysis day and non dialysis day. Immediately after 3 hours of dialysis I would give a pee about 300-500ml, however, in the normal course of a day, for that duration I would just pass about 100-200ml. And one other thing is that the machine moves the blood in a faster speed than its natural pace and the prime given in the blood in the beginning of the session makes the natural kidney work harder than normal hence more urine in a shorter amount of time. Besides plus the wash back I get which means on dialysis day I would take on 500ml of extra fluid with me. (One curious thing, 4-5 hours after I get home on dialysis day I always pass about 220ml of urine, and the wash back is about 220ml ) As a result I always pass more urine on dialysis day than non dialysis day.  For a patient like me who still passes urine means that the dialyser is not a total replacement of the kidney, rather it is an addition to it.

From my weight and urine chart I can see that my weight may come down a bit after dialysis which lasts till the next morning, but without dialysis the weight always reverse to its own course. Then again I dare not stay away from dialysis for too long, the longest being five days, my weight in fact dropped from 47.8kg to 46.9kg (happened in Oct last year, the data is not included in the current chart). As a result, I can’t say exactly how my weight would react if I am not dialysing.

Since a person's weight fluctuates during each day and from day to day, unless a patient can dialyse in the same time of the day all the time, if whose fluid taking on dialysis depends on whose dry weight, the dry weight could easily be messed up.

Dialysis Daily Body Weight and Urine Chart

Thursday 2014-02-06

The following chart is my daily body weight and urine chart as a dialysis patient. By the way, had a peek on my dialysis order today, which some nurses don't even let me looking at it, my dry weight was written as 50.5 kg. They were scratching their heads. Since my UF goal is zero, I don't give a damn. It is summer now in the southern hemisphere, but they are still on winter scale.

Betadine and Chlorhexidine

Thursday   2014-02-06

Some centres use betadine to sterilise my catheter, and others use chlorhexidine. Some nurses who use chlorhexidine are very annoyed of the betadine strain. The nice ones would clean and scrub the stain off with gusto, and I would watch them with good humour and imagine of their spotless home that everything shines and reflects as mirror. Others would clean the catheter with grudge and attitude.

I remember that one time how I got a severe told off while being cleaned, saying that how I should clean it with water and soap, that in New Zealand the catheter is not even dressed, and cleaning is done in the ordinary way. At this point, I simply hold my tongue.

For fear of infection, I dare not touch the catheter. When I bath, I cover it with sandwich rapper. Because the awkward position of my catheter which is right near the armpit, dressing it is always a problem. Most of the time the side of the dressing would be opened up even before I get home from hospital, which often want more sticker on all three sides. With dressing like this I never dare to take a shower even though I was told that the dressing was waterproof, to me they look far from it.

For me, as long as the point near the stopper is clean, I’m happy. This satisfies me and gives me the peace of mind.

Dialysis Dry Weight and Fluid Taking

 Saturday 2014-02-01

When I was first thrown on the dialysis chair, I was very ignorant, very sick and very trusting. The only thing I knew about dialysis was that it would make me better and I would feel cold. Any side effects were never mentioned. I thought all the discomfort, the pain and the cold were part of the deal and should be endured. Later, I found that much of it could actually be prevented and that medical people could only be trusted selectively.

The first thing I noticed was my fingers often stiffen up, and I couldn’t use my hand. I mentioned it to the med people in the Ward, no one seems to know what I was about. Then more things started to happen, my limps would cramp and locked up during the night, legs and feet were contorted like someone  suffer from polio, not to mention the agony and pain.

One day, the same thing happened when I was on the chair, was told perhaps too much fluid was taken. Fluid, what fluid? I didn’t know that fluid were taken, I thought they only cleanse my blood. I learned that my weight of the day was checked against something called dry weight, and anything extra was considered as excessive fluid and was taken. I could still pass urine, in fact they checked and I brought back to them 2.3 litre of it that I passed during a 24 hour period, hence no fluid was accumulating in my body. What they have done was severely dehydrated me and caused a lot of pain. 

By the way, whether a person has fluid in the body is easy to verify simply by checking the leg, the neck and listen to the chest.

What happened was a week after dialysis I put on 0.6 kg, another 2 weeks later 2 more kilos. My flesh gain was mistaken as excess fluid. Even though I told them my urine story again and again, and the fact that I had a urinary catheter in me for a few days, both my fluid in and out was recorded religiously, but nobody seemed to have bothered with this information.

When eventually the dry weight problem was settled, they told me they still need to take 500ml which is simply the amount given me on the chair – a drink, the prime and wash back. I was confused, but it sounds fair.

One day, finally I had the whole thing worked out. What I find was, even the prime was in me first, the volume of liquid including blood and prime on me remain unchanged, the drink would go through normal channels not directly into blood, the fluid taking is a continuous event, and the wash back happens in the last minute.   Thus, taking 500ml would mean that I was continuously being squeezed of my extracellular fluid in order to replenish the ones taken - in laymen’s term being “dehydrated” continuously and flooded in the last moment.

What they say that only take what’s given is not total truth. In order to preserve my precious urinary function, I put my foot done and requested 0 fluid taken and met with strongest objection. I had to insist on that I took full responsibility for my decision.  Eventually the UF goal was set the minimal that the machine could accept. The whole story was recorded in the medical sheet of the day and I was never asked back to that particular centre again.