Hepatitis B Vaccine

Saturday 2014-03-29 

When I had my first two hepatitis B vaccine injection I didn’t dare to look, each time they said it would be painful but I felt nothing. Six months later from the 1^st one, yesterday I had my 3^rd, as nowadays I’m practically live in the hospital, I am quite the veteran, besides after Easter I might start needling myself, I braved myself for a peek.

I was astounded when I saw only one centimetre of the needle left outside the skin, the rest all went into my arm, for a moment I thought perhaps it went through me. But I checked there was nothing poking out of the other side.

Nurse J who has 17 years of experience, perhaps has used to putting needles in the elephants and forgotten that I am only a chopstick. Before jabbing she warned me it would be painful, she was not kidding, I still have trouble lifting my arm as of right now a day after the injection. And I remember that nurse S who's over 50 years of age often praise J's needle work. Maybe nurse S meant she was more nimble working with a needle with wings rather than with a normal syringe.

Haemodialysis Fistula Repair – Branch Ligations and Effects of Anaesthesia

Thursday 2014-03-27 

My initial fistula had limited blood flow which need re-operated to render it workable. On Tuesday, 18^th March the surgeon told me there would be two incisions, one near the wrist to do a turn-down, a little further up a ligation of a side branch.

After the operation I did see two dressings, but the turn-down was not necessary, as it’s already 3 and half months after my ultrasound which detected the narrowness of my vein, I, myself did the turn-down all on my own during that time, the two openings were both ligations.

The story was the surgeon snuffed my idea of twin fistulas saying the arterial flow need to be massive to make it workable. When he opened up my skin, he had found that one of the twins under my theory, Arnold had grown and opened up the narrow of the vein, as a result turn-down wasn’t required and Danny was terminated, the ECG chart turned flat along with his little brother (another side branch of my veins which can be seen from my photo in earlier blog). The surgeon told me that Arnold was still growing, after Easter the fistula should be in working order.

Before the operation the nurses “ooh” “ah” about the purring sound made by my handicapped fistula. Even though it doesn’t work, the fistula matured well in the past 5 and half months. They have never seen such a mature maiden they might have seen plenty of fistulas, all of which would be either newly created or damaged needing repair, nothing like mine, buzzing and alive. Everyone put their hand on it and had a thrill.

After I woke up from the anaesthesia, my mind was in super working condition which couldn’t even remember my own weight right after I stepped off the scale on my normal days, could memorise 5 sets of blood pressure including both systolic and diastolic, the hypertension drug administered, their quantities and names. These figures rolled out of my tongue an hour later for recording purposes and I was drifting in and out of anaesthetic effect when I asked those questions and the nurse lied to me about the number of times I asked him those questions.

I also learned that the young male nurse who looked after me had a son and a mortgage of another 13 years, and had to work from 5am to 10pm 7 days a week and making sandwiches for his 11 year old son before going to work each morning.

When I told him I just bought a house a few days ago, he made fun of me for doing it this late in my life. I kept on pestering him with questions within less than an hour waiting in the recovery room. He must be relieved when I was finally being trolleyed off. In my normal state of mind, I’m not the chatty type. Who would have thought that anaesthesia is such a wonder drug!

I can still vividly remember another incident that last September when I had my catheter operation, afterwards when I woke up another phenomenon occurred, I started mimicking sounds, peoples’ voices, phone ring tones, machine beeps, anything came into my ear I would repeat, my mouth was so busy that day mimicking the cacophony of my surrounds that nothing escaped my ear. The nurses were murmuring above my head, I broad-cast them all, I did make some of them blush. I knew what I was doing, just couldn’t stop it. The supernatural power didn’t last, overnight I was mere mortal again.

Dialysis Risk – Trade Off for Chance of Home Dialysis Therapy

Monday 2014-03-17

There is a price to pay for everything. It is also true in gaining the right doing home dialysis therapy.

Monday, 17^th March the associate professor K called out my name when the receptionists left and the door to the clinic closed, I was the last patient there. While I was waiting I overheard the receptionists talked about what a busy day it was, all in all 75 patients were seeing that afternoon from 1:30 to 4:30.

In order to clearly and succinctly state my things I prepared him a note earlier, former experience told me the doctors are always pressed for time, generally the duration for each consultation last 15 minutes.

The associate professor skipped through my note, but I doubt the sharpness of his scanner. His memory didn’t go beyond the 1^st paragraph and was oblivious of its contents which he showed clearly during our consultation.

I also showed him some graphs of my past months treatment and result which include my urine since Sep 2013 after I was diagnosed, my weight, detailed treatment and test result which was printed on one page easy to read and compare with explanatory notes to particular figures.

He brushed off my charts, saying having urine is fine but it’s not everything; told me to watch my weight while my chart clearly showed that it had never been an issue. I told him my UF was zero, he was surprised. I said the nurses were giving me 200ml saline that morning and advised me ingesting more salt and sugar; as for the test results he said he had them all and dismissed my chart. I told him mine is all on one easy page, I didn’t tell him that he didn’t have all my results as I was moving around and some centres didn’t belong to the hospital system he’s working in, some of my result didn’t show on his computer, I carry them personally. Since he clearly had no interest there was no need wasting time telling him that; I did catch his attention briefly when I explained the treatment chart, that how the different hours and the pump rate came about.

He told me that middle and large toxic molecules need longer time to be rid off. Since he has most of my blood and urine results I didn’t dare to mention that I’ve been losing large amount of protein and sugar through my urine and inevitably toxin of similar size and weight.

The fact that after doing longer hours for the two weeks before I saw him, all my figures became worse which he failed to mention or explain. Either because things didn’t go his and his subordinate, the training manager’s way, or he too, being one of the persons who could read one set of test result only; My urea before my dialysis carrier started in Sep 13 was 32.4mmol/L, 31^st Oct 2013 when I did 3 hours twice weekly was 16.8, 16^th Jan 2014 at 3 hours three times weekly 17.5 and 17^th March 3hours and 45minutes three times weekly was the worst of all at 35.6mmol/L.

Immediately after consultation each Monday the doctors would have their weekly meeting, he told me that during our consultation and kept on looking at the door, as I was his last patient of the day he was clearly extremely pressed for time.

All other doctors when they examine me physically would listen to my chest front and back while asking me to deeply breathe in and out a few times. The associate professor did it in super speed, even before I finished breathe in and out for the 1^st round, his stethoscope already left my body.

When I asked him whether my medication needed adjustment, his answer was negative saying everything stayed the same. But he wrote out my prescription 2 out 3 with reduced quantity – the doses were wrong. His mind was already in the other room where he was expected at their weekly meeting.

In spite of all these, the consultation was not a total lost. He did dose out 4 hours of dialysis for me instead of what I was told through his subordinate, the training manager of their initial intention of raising my treatment from 3 to 5 hours.

When consultation was over, he asked my permission to keep all my charts and note, he was impressed by the blood result which was all in one convenient page created for a layman such as me. The note he showed particular interest and reluctant to relinquish which took us a tug of war for me to get it back, his hold on it was very tightly. The note was to help me communicating my things easier, communication was done, its purpose served. I knew he didn’t read it through, he knew he didn’t read it through, but I did give him my other charts.

Haemodialysis Fluid Paradox

Friday 2014-03-21

My status has risen on the dialysis chair, now there’s no need for me to drink water, tea or coffee, I’ve been upgraded to saline. On dialysis I take on 710ml of saline which include 220ml prime, 220ml wash back, 300ml extra minus 30ml UF (minimum machine accept), they say I can pee it out. The nurses are very considerate the 300ml is broken into 3 intravenous infusions to alleviate their impact or in another sense 300ml at one go, they could be tired of running my toilet trips. The amount of fluid I’m given almost equals to my fellow patient’s off rate.

Since I’m doing longer hours, the nurses related my lethargy, light headedness, yawning, headache and cramps to dehydration hence the decision of extra saline, the advice of ingesting more salt and sugar. I’m very scared of their creative ideas. Probably they will give me glucose IV next as I’m not diabetic.

Not too long ago, on 11^th Jan (refer to my previous blog), another senior nurse was very angry with my refusal to have fluid removed and called the doctor to back her up but failed. In the end of that day she gave me a lecture about the importance of fluid removal.

My physical condition hasn’t changed, but the nurses’ attitudes towards my fluid issue have. I wonder what would happen if they met and talked about my condition. Could both of them be right, wrong, or one of them right and the other is wrong? I’m confused. Could I, the only one who has got it right?

By the way, after all the trouble they have put me through, the mother hospital now is providing me a psychiatrist to help me dealing with the stress they put on.(The 1^st session ended with 5 repeats of sleeping pills). Am I the only person who needs a shrimp?

Haemodialysis Access Conundrum - Fistula Turndown and Ligation of Branch

Thursday 2014-03-13

Ultimate haemodialysis access solution - twin lumen on one fistula

My arteriovenous fistula turndown and ligation of side branch is scheduled on 18 March, next Tuesday. The fistula is a knotty character. I’m right handed, but my left arm is useless with too many rivers and branches; my right arm is not a straight forward story either.

31 Oct 2013 a fistula was created in my right arm, last Christmas ultrasound showed there’s a twin of them.  Today with naked eye I can see one vein zigzagging like ECG chart and bulging along my right arm, the other vein invisible but I can feel, also bulging under the skin. I can’t discern whether it’s a Danny and Arnnie scenario or an identical twin, when I listen through a stethoscope they sounded similar which means they have equal volume of blood flow. Anyway the doctor decided to ligate the “ECG chart”.

I guess the surgeon would be laughing at me if I suggested keeping them both and putting a needle in each as they share equal flow, one for arterial the other for venous, because I’m anatomically illiterate, he may think my idea mad. It makes sense in layman’s logic, it will separate arterial flow from venous flow so to prevent back flow and prolong the life of the fistula. I may try my thought on the surgeon.

My surgeon is a young energetic registrar who is nice, kind, looks intelligent and capable who did my catheter operation as well; however, nurses didn’t like my catheter when they changed dressings for its awkward position, yet they didn’t voice their trouble to the surgeon who kelp on churning out patients with similarly positioned catheter.

The fistula he created for me in October has a few issues hence next week’s surgery. One of which was as I stated earlier there was a branch which siphoned off half of the blood, and another issue was the anastomosis at 2.1mm in diameter was quite narrow, and just above which was even narrower at 1.4mm, the outflow is 199mils p/minute, 11cm above wrist crease the vein is 6.8mm and my artery at fistula is 3.5mm, the fistula inflow volume is 488p/m. Due to these issues the fistula is useless. The correction of the problem is to do a turndown which I have no idea what it means exactly, apart from knowing that the artery and venous connecting point is too narrow providing limited blood flow and need to be widened to be useful for dialysis.

           [The ultra sound was done 16 Dec 2013, since then the branch on the right has grown, flows to both are close to equal, a little over 200ml/min on the left, and about 200ml/min on the right, by my last ultra sound check 5th Feb 2014. Now I feel, it is about the same. ]

The funny side of the story is the initial fistula was scheduled as urgent which was operated on 31 Oct 13 after the veins were mapped on 26 Sep 2013; the repair job labelled as semi urgent before Christmas is scheduled for 18 March. The optimal usage time for a catheter is 6 months, mine was done 10^th Sep 2013, I’m now is chasing the tail of luck.

Inconvenient Truth of Haemodialysis – Extra Catheter Required

Monday   2014-03-10    

My legs and feet cramped terribly in the last 10 minutes of today’s dialysis, my calf was as hard as stone and I couldn’t help cried out in pain. My woes are piling up day by day. A part from this place, the previous time I had cramp was when my UF goal was more than 500ml early Oct 2013.

The nurses were attentive and nice, brought juice to my mouth saying would help the cramp. Fear for hurting their feelings, I drunk the juice. After a few minutes the cramp moved up to my stomach   the cold liquid pulled my entrails and pained like hell. Watching me in agony helplessly, my woeful state wrung the heart of my beloved.  It took 2 and half hours curling up in bed for the pain to go away.

This morning they asked me how I felt, I said I didn’t want to hurt their feelings, but the fact was I began feel worse when I got to their place. Interpreted in their own way they said that I would feel better after I did longer hours for longer in the future. I can’t believe how diluted they are. As a matter of record I told them all my woes that I was lethargic and feeling miserable after dialysis in recent times and how difficult having lunch afterwards for me was. They advised me lying down first before eating. Follow their advice I would become a mummy, how could I defend myself then physically.

I told them how I feel constantly having the false sensation of wanting to pee even just coming out of the loo and peed about 500ml and how I was holding back my urine due to my inconvenience of wearing a dialysis catheter until 3 sessions ago they allowed me a pan. As if they didn’t hear me, saying that I shouldn’t hold back urine which was not good for me, totally oblivious that it was not by choice.

They simply can’t understand what I was talking about and how I felt. Since they allowed me the pan I have taken full advantage of it. Today I used it twice within 3 and half hours and peed 300ml + 150ml and another 200ml straight after the session. However the peeing sensation didn’t go away. My opinion is my urine was produced too past, my bladder can’t handle it.

They gave me many advice most of which made me worse, if they advised me putting in a second catheter (urinary) in me I probably would have a go.

I may even take up their advice and ask for 3 pans next time not holding back any urine, by then they will indeed give me another catheter saving them from running  my toilet trips.

Dialysis Daily Body Weight and Urine Chart ( 2 )

                                           Note: UF goal mostly 0, From 14 Feb, UFG=20ml.
24 Hours urine count after morning BW taken till next morning before taking Morning BW, Evening BW taken before bed, my urine at night makes up close to half of the total 24 hours urine.

                                                    

Dialysis Risk – Indirectly Fluid Removal, Killing Residue Kidney Function

Friday 2014-03-07

Dialysis overdose, assuming what they are doing to me are out of good intentions, the result is I’m being killed in slow motion. The prolonged treatment time drains all my energy. I feel exhausted after dialysis, getting home being the worst moment of all. I couldn’t keep my eyes open, feeling funny, every bit of moment making me sweat profusely and the whole body feels discomfort and misery, swallow back tears, and in a trance I nourish myself. Longing for bed, but I‘m not in a state of rushing food down.

My last battle failed miserably, yet the war is still going on. The rubber band of my physical endurance is now being tested. Last time I endured such impact was on my dialysis treatment début, when everything about dialysis was new and unknown to me which lasted 10 sessions. Now I have to suffer all over again, past torment thrown down the drain. Hoping my body can hold long enough to see the end of the tunnel.

In order to allow me dialysing longer, they give me a pan, first time since September 2013, the longer I’m on the machine the more urine I churn out. In the past few times, after 3 and half hours I pasted more that 650ml. In the normal course of that duration I just past around 200ml, which means they make my 3% functioning kidney work 3 times faster than it should and more. I wonder what this will do to my residue function. My bladder is not happy either, on the machine, even after I pee I still have the feeling of wanting to pee, and the sensor of my bladder is totally stuffed. At home, even not on dialysis the urge to pee stays there. It’s a horrible feeling that one wants to pee all the time.

In actual effect,  they are removing fluid from me, the difference between previously when fluid was removed last September, it was done by machine directly through the reached UF goal, it is now done indirectly by hooking me up with the machine through my own natural kidney which is an unnecessary prolonged process giving me unnoticeable benefit but misery.

When fluid removed through UF goal, immediately off the machine then, I’d past more than 500ml of urine, and at the time I only could estimate, later I began to weight myself so that I could find the exact amount. After each session I did not pee for a long time until the next day, when it came back slowly, nor did I know thirst or hunger. One feeling I did have was constantly having the sensation of wanting to pee.

I don’t dispute that other patients who have no urine function left may also constantly feeling want to pee, but in my case my suffering could be avoided.

After I started doing 3 hours the sensation gradually reduced, it never went away completely. Because even with 3 hours I was already holding my urine and I’d pee 300-500ml straight after each session. Now when they allow me the pan, I found that after 1 hour 40 minutes I’d past 400ml+ of urine already. Imagine the speed of which my kidney must be working, undoubtedly it must be in a frenzy.

Thinking of those fascists who forced me to endure this make me wanting a cricket bat, but my batting target is not a ball. The difference between them and me is that I don’t act out my fantasy but they do. In their imaginary mind they believe what they are doing to me is for my own good, they have no eyes or ears to perceive reality.

If the assumption of their intention being good doesn’t exist, it would colour their hearts as the hue of that of coal. 

The Risks of Haemodialysis Dose, Shit Happens

Wednesday 2014-03-05

A mouse is having an elephant dose.

To avoid eviction I had to increase my hours from 3 and eventually to 5 before I see the doctor on 17 March. As I am less than 50 kilograms, right now I feel like a poor mouse whose getting the elephant dose. I’ve been doing 3 hours since 12 Oct 2013, which have been working well and gradually making me better.

The moment an adult patient sits on the dialysis chair, his journal on the conveyor belt begins, most of whom would be prescribed a dose of 5 hours, 3 days weekly, 35.5 C machine temperature, Sodium 140mmol/L, heparin (bolus 1000 unit, hourly rate 1000), and etc..., indifference of age, gender and weight. Patients who are out of this rage would be disadvantaged, and I think these poor souls would be likely to fall into haemodialysis mortality group.

I remember seeing some incidents while sitting on the dialysis chair. The other day, some poor guy nearly pasted out. What happened was the fast speed of removing his fluid brought his blood pressure down too quick and too low, his heart beat reduced to a worrying level. To prevent an ambulance situation, all his vital figures must be up, to achieve this, fluid must be restored, and saline was therefore reinfused into his blood.

That day the nurses were very worried and busy, checking his blood pressure in short intervals, adjusting his chair up and down, down and up, and he was attended with extra kindness. After about half an hour, his condition was stabilised, he was letting to sleep and continue his session and the nurses wiped off their sweat. This patient’s UF target that day was totally stuffed, but I saw he got two extra packs of cookies (2 cookies in 1 pack) taking home.

There was another woman whose luck was poorer, experienced a similar episode but which was in the beginning of her session. Her condition wasn’t stable enough to continue, so the session was aborted within half an hour she started. She came in 44kg and went home more than half a kilogram heavier and I noticed the UF target on her machine was 3 litres and it was a Saturday! The poor woman ended up the day not only didn’t have her fluid off instead more fluid was on, not to mention her toxins. The nursed had their hands on their mouths when recording her weight and eyeing each other with strange looks.

Last week my fellow patient, 2 hours into her 5 hour session she wanted to go to the loo, she was washed back and temporarily taken off the machine. When she stood up her legs started cramp which was another side effect of removing fluid too fast. She was gasping, her face contorted, and yet too polite to curse, but one may discern some smothered sound, she kept on saying sorry while obviously she was miserable suffering tremendous pain and that went on for about half an hour. In the end, the nurses decided to send her home. What a pity, they used the BVM machine on me for lie detecting purpose (detail in my other blog) instead of on her which may have saved her from this incident. By the way, the reason for her loo break, I think was not to pee, after what had happen to her earlier whatever she was holding was not there anymore, women normally can’t hold a pee this long, only shit can be easily scared off.

If only some people could respect science rather than setting their imaginary goals on dialysis machine, patients would not have to suffer anymore than what their illness had brought to them.

There are some unbelievable stories that dialysis concentration solutions could run out of stock which had happened to me twice, once for real and the other I keep my reservations.

When bad things happen, what can you do?

Like our current Prime Minister used to say, ”Shit happens”!

My Kidneys, My Home, My Choice ? (2)

Here is an email that I prepared to send to the person who is in charge instead I am putting it in my blog.  Emailing it I would be treading on thin air, I’m at a tight corner in this moment and can’t afford more complications.

The experience in the past few days gave me things no better than my poor kidney did, I may want to trade the chance to have my troublesome kidney improved for a bad experience, certainly not both a dark experience and a worsened kidney. Can any expert in haemodialysis field prescribe me something to get rid of this side effect?

Dear Professor,

From a patient who just started her home dialysis journey two weeks ago (Friday, 14th, Feb), I wish this “5th Australia and New Zealand Home Dialysis Conference” a success. The theme of this event "My Kidneys, My Home, My Choice" is properly better said than I could myself. With better facilitation, home dialysis therapy will give patients a better treatment choice.

It was very sad what had been happening to me right now. Without giving a chance to see a doctor and given clinic consultation I am about to be forced out of home dialysis learning program, unless I agree to change my current treatment which I have been on for more than 4 months.

On Friday 28 Feb the unit manager delivered the message that she had booked me to see either Professor P or K on 17 March and that I could no longer come to her unit and she would book my next dialysis probably in centre S. I was astounded.

Only on Wednesday 26 Feb she had promised me seeing a doctor before any changes were made, and that while I was waiting the consultation of a doctor I could remain at her unit continue learning and dialysing.

I was totally stressed, without a doctor’s consultation and was not even given a chance to consider the whole situation, I didn’t know that making treatment changes was a prerequisite to stay in the programme, that if I didn’t agree to it I was out immediately. I was devastated.

I was not against changes, especially when it would benefit me. In fact I told the nurses that perhaps they could keep the current treatment for a while, so that they could get familiar with my case, and I would be more relaxed and ready to take on any side effect of the changes.  I’m suffering from severe anxiety disorder which could raise my blood pressure easily to above 200, especially with tense situations, new places and the intensive training and learning at the start of this programme, what else it may affect me, that I have no idea. My spouse and I have talked about it that I may have a better chance to get through the changes, if I were in a stable state and familiar environment.  So we hesitated about the change right now, and seeking doctor’s advice was always on the back of our mind.

 However, the moment I was waiting for didn’t come soon enough. I’ve been in this unit six times. Things kept happening to me one after another, I hadn’t a moment of peace in my mind since I got here.

For the first 4 times here, I found that I was dialysing in a higher Calcium bath. When asked about it the response was that they didn’t have the one I was using. One can run out of stock for one day, not all the time, after all it is a hospital.

The second incident was on Mon 17 Feb, the second session there while starting dialysis the nurse and I saw a blood clot the size of a thumb nail flew out of the catheter into the artery line. Being a medical illiterate, I began to worry about my venous line. In the end of the session my artery line was not clamped properly, blood flew backwards during wash back, I was interested to learn how to prevent such things, but she didn’t give me a satisfactory answer. On Friday 21 Feb I felt extremely tired, light headed, nausea and shaking uncontrollably. My ambulatory blood pressure had risen a notch, from 110-140 to 150-170. I had spent a few sleepless nights full of anxiety and fear.

On Monday 24 Feb the Calcium bath was changed back to what I was using before.

My trust in them was in doubt, by now and seeing all of these, I have hesitations to do changes at their bidding even if it were the changes I wanted. I couldn’t stop wondering what would happen to me if I dialysed one extra hour on the high Calcium bath.

On Wednesday 26 Feb, I came in feeling very weak and not my usual self. The manager told me that I had to increase my hours to stay in the programme. I asked if I could please see a doctor before any changes were made, and she promised me a doctor’s appointment and that I could remain in her unit until such time.

On Friday 28 Feb all this was changed. She told me I could not come to her unit anymore and would book my next dialysis probably in centre S. I was shocked, terrified, in tears and uncontrollably trembling and shaking. My certainty for future dialysis was no more and felt that my life was being threatened.

It was so out of the blue, one day was all right next day was all changed. Dialysis is a life-long treatment, I don’t understand the rush, what difference does 2 weeks make (till 17th March), why the urgency and the sudden change of mind. I was not told once if not agree to changes would cost my right staying in the programme, let alone being driven out immediately.

During a dialysis session is the most venerable state of any dialysis patient, her message of stopping me my training programme both on Wednesday and Friday was delivered at such moments, and on both occasions my spouse reminded her of my anxiety condition.   After confirming with her, that it was made clear to us that she had informed her boss about my situation.  Scared of losing the certainly of my future treatments, my spouse and I agreed to let her change my treatment time by the amount she thought was ok. She agreed that I could come back next Monday to continue learning and doing dialysis here in her unit.  My spouse told her that I have been doing 3 hours dialysis for too long (more than four months), when she changes the time if it were possible to do it gradually and monitored by an experienced nurse for safety.  Later she came back said that we need to sign a paper.

If I had known that it was a condition that I must have longer hours to be in the home dialysis program, I would had tried to get a medical advice privately if the time to wait for clinic visit was too long, or just took a risk taking longer time. Now before I could have a chance to seek medical advice and ask a doctor to review the treatment, I was forced to make on the spot decision myself then and there that I must agree to the changes. I confirmed with her again, if not increasing treatment hours was the only reason to kick me out.  She said yes, but rather I didn’t use the word “kicked out”.

It is about home dialysis therapy, it should not have to be like this.  It should not be the way for a patient to be treated in a hospital, and by a nurse manger in front of other nurses and patients.

One of the reasons I want to do home dialysis is that it would benefit me more and I know I need to make the longer time treatment environment available to myself before my body forcing me to.

The other reason is my anxiety disorder condition, on none dialysis days, my ambulatory blood pressure has been in the range of 110 mmHg to 140 mmHg, but on dialysis days before connecting me with the machine, my blood pressure could be in the range of 170 to even 200 mmHg, it drops down if I can dialyse at the same place for a longer period of time.

My spouse and I are very committed to the programme.

Why all of these came out so wrong?  Why is home dialysis so hard for me to have? What are the conditions and requirements that patients must meet to do home dialysis?

As a patient, it looks like that I was given a choice to do home therapy, but before I was really in the door my chance was taken away plus my basic rights of certainty for my future  treatment. Do I really have the choice to choose home dialysis? I may not physically possible to make to the “5th Australia and New Zealand Home Dialysis Conference”, but it is a question I would ask if I were given a chance at this conference. I know the answer to it would be yes, but in real life, it is close to impossible to me.

I know you have put in extra effort into this conference to get more people to see the good side of home dialysis therapy, I hope to use some of your time reviewing my treatment and making changes to meet the requirement of home dialysis, and to help one more patient in real life onto home dialysis therapy.

By writing this email to you before this conference, I feel I may just have thrown out my last chance to do home dialysis and lost the certainty of all my future treatment, the moment after you read this. But for the good of finding better way to facilitate patients onto this good programme, I send you this email.

I might have done many wrongs handling the above situation, one of which may be the hesitation and concern I had in making treatment changes without medical advice first which may have made or caused me being kicked out. Maybe there are other wrongs I am not aware of, there may also be inappropriate wordings in this email, please point them out when you see them. I and my family do not want to see it fails, for the betterment of my health we are willing to make any changes needed. With you point out what we should do and improve, I may still have a real choice in my treatment.

It is very hard for me after experiencing all these all of a sudden and to try to suppress my personal feelings and try to write this email to you as objectively as I can, please do not mind if my wording appear improper.  By the way, there was no heated arguments in the training unit throughout the whole situation, as I was in a state could not talk with shock my partner had managed until the end without  raised voice, any impoliteness and improper wordings, there were other patients present in the unit having  their session during this whole time .  

Sincerely yours

2^nd March 2014