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