My MUM talking about stopping dialysis

[f77ms]

Hi
My Mum started Dialysis in September and is really not coping well . She is exhausted all the time , has no quality of life and has mentioned coming off dialysis . Her haemaglobin is also very low at 7.0 and she seems to have lost all her confidence , the days she is not having dialysis she spends lying on the sofa feeling weak and very unwell.
When she started dialysis at Manchester Royal they mentioned that she probably would not need 4 hours 3 times a week due to her size as she is very tiny and light. The unit she attends now is run by a private company and the Dr did mention that the company wanted everyone on 4 hours/3 days as a target . I really think that my Mum who worked for the NHS all her working life would cope better with less dialysis and it annoys me that targets are set which have nothing to do with patient care and everything to do with profit . I am sorry if I come over as bolshy but I am finding it all very stressful as I am her main support and encouragement .
What I would like to find out is how the amount you need is calculated , I have trawled the internet but mostly is seems to say that you can`t have too much only too little . I am afraid that she will stop having it without ever having any benefit and am sure it should not be like this . The local unit where she has dialysis do not encourage relative involvement and we are not allowed into the unit . The manager told my Mum that she will see the Dr once every six months but they will try to bring it forward to the beginning of Feb due to her being so unwell and I think we will have a chance to speak to the Dr then. I have read as much as I can take in from the various KP sites and wondered if anyone had any advice /info
Thanks Fay

[suz]

Hi Fay
I have been on haemodialysis for 4.5 years now and can only speak from my own experience. When I was doing 4 hours dialysis 3 times a week I felt really unwell after dialysis and after discussion with my Specialist he changed it to 3.5 hours. I felt much better and nothing has changed with my monthly blood tests. This was more than 3 years ago so it has been sustainable for me. What I have learned with dialysis is that everyone has different requirements, in my unit we have people who do 5 hours 3 times a week and others who do 4 or less hours twice a week.

Having such a low haemoglobin would make your Mum extremely tired and have very low energy levels, is she on any medication for this (usually given at dialysis). I'm sure if her haemoglobin was higher she would start to feel better than she is now.

I am surprised that your Mum is only down to see the Dr every 6 months. I see my renal consultant every 2 months routinely, and if I was unwell I would either be able to see him or talk to him by phone or the dialysis staff can contact him if they or I have any concerns at any time.

Your Mum should be able to have some say in her treatment and can't be forced to do anything against her wishes. Can the staff actually stop you from entering the unit especially if your Mum is so unwell? I find this quite bizarre and have never encountered anything like this with friends and family encouraged to be involved.

Hope this has helped and happy for you to PM me if I can be of any help.

Regards Suz

[f77ms]

Hi Suz
Thanks for your reply . Interesting that you find it bizarre as not having much experience I thought that it must be normal to not tbe encouraged to enter the unit. I also thought that dialysis was a tailored thing and my sister and I were fully expecting this to be worked out quickly. I think my Mum has got quite depressed as she was told she would feel better but in fact feels worse on dialysis. She has also had a couple of falls in the house which have shook her up.
She was given Iron a while ago in the unit but it did nothing to improve her Hb level so they treated her with antibiotics for a kidney infection but nothing since. Everything seems to take forever as she continues to look more frail .
My sister rang the unit last Saturday but was told they couldn`t tell her much without permission from my Mum but yesterday while my Mum was having her dialysis the manager came to take a blood test to see if they could reduce her hours any. So I guess the phone call must have got something moving !
Fay x

[jan4alan]

Hi there, it sounds like your mum is having a really tough time which must be so difficult for you. My understanding is that it is recommended that all patients need a minimum of 12 hours dialysis a week. From my own experience I found the machines used in the renal unit were leaving me completely wiped out and wobbly. I have home haemo now with a different machine which suits me better and dialyse alternate days. On the odd occasions I have to dialyse in centre I refuse to have more than 3 hours a time and also insist that the speed of dialysis is slower than the usual 400 setting. In my opinion the point you have used is really important. There is no need for a 4 hours 3 times a week. Treatment should be sensitive to people's physical and psychological care needs on an individual basis, not as a routine without thinking. Your mums Hb levels are so low she must be feeling terrible anyway. Another point is that there are some people who need fluid removing, I'm so fortunate that at present I don't have this need. I would have thought if you do need fluid removing it may well take a little longer to dialyse. The lack of flexibility is astonishing. It's as if the warehousing in some renal units is just a process like a factory line, not for people. Your mum is lucky having you and your sister to advocate for her and I'm tempted to say I would do this quite loudly. Good luck and I hope she begins to feel better soon.
Jan

[wagolynn]

I am only a patient – Mums Haemoglobin. The next move should be to put here on EPO (you no doubt have read about this) but just in case EPO is a hormone produced by the kidneys (when healthy) that gives the bone marrow a kick in the pants to produce more red blood cells. Of course this cannot happen without iron, in the form of ferritin, being present. I find in the unit I attend, they appear unable to get their heads around this, feratine is checked every three months. However EPO is administered then a wait to see if the cell counts lifts if not then iron is given, just crazy.

As mentioned in the posts above, mum will always feel tired with a low cell count, and high levels of waste products in her tissues will tend to make her feel depressed. In this state she will need sympathetic support, which it sounds as though you are trying to do.

If you are unable to get an early appointment with the Nephrologists then get her GP involved, explain your concern, after mum as had her say. The fact the unit is being run by a private contractor should not make any difference, a sick patient is a sick patient no matter what.

As to dialysis time, initially the nephrologists have to make an intelligent guess based on sex and body weight. This then gets fine tuned after a few weeks.
It is similar for the amount of water taken off (if she needs water off); the dry weight is initially little more than an (intelligent) guess. Too much water off and she will complain of acute thirst or could even faint whilst there, not enough and she will slowly fill with water, puffy ankles, puffy bloated face or in extremis difficulty breathing etc. The amount of water taken off is usually calculated by the nurse putting her on dialysis. The dry weight is initially estimated by the consultant.

Watching other patients in the unit I attend (run by a contractor) it usually takes six to eight weeks to get a patient settled in.

Best wishes to you both.

[amanda in CA]

What is at issue here is not how much dialysis she is doing, but more about how much fluid they are removing per treatment. It is not the treatment length that causes someone to feel unwell, because the more dialysis the better (think of better toxin removal), but how much fluid is removed and how quickly. Some questions. Does your mum still pass urine? That is a big factor. If she is and they are jog taking thus into account, this is another reason why she may not be doing well. Too much volume removal, too quickly, results in volume depletion and gives rise to the feeling of weakness, cramps etc.

The other issue is the fact that she is very anemic. Not surprising that she feels this way. Is age on epo (epogen, procrit) injections?

Is peritoneal dialysis or home Hemo an option for her? Peritoneal dialysis is easy to do at home and people feel much better on it. also, home hemo may be an option. Dialysis is done more frequently but fluid removal per treatment because it is done more often tends to be less, and there is not that washed out feeling afterwards. Dialysis does not need to be exhausting, it it is managed properly. Is there any chance that she could switch clinics? I think that you need to request a case management meeting so that all these issues can be discussed.

[amanda in CA]

Another point. You need both iron and Epo to make red blood cells. With a count this low, epo injections will result in more blood cells to be produced but this process will quickly consume iron stores and then the process will come to a grinding halt and the anemia will remain. You need to demand a review by the nephrologist, get your mum to sign a consent so that you can be involved.

[wagolynn]

Hi f77ms,
Having thought a little more about you and mum overnight (poor sleeping is also par for the course), I add the following:

Patient confidentiality – Your mums GP, the dialysis unit or the consultant will not or should not discuss your mum’s case with you, in the detail you require unless mum tells them it is OK to do so. You need to talk this over with mum and ask her to let them know if she wishes them to discuss her case with you.

When a patient starts dialysis, in general they have had malfunction kidneys for a long time, meaning they will have built up a large amount of waste products in their body tissues. Dialysis removes some of the waste products (+ water if required) from the blood. The transfer of waste from the tissue to the blood is a relatively slow process, so at the end of a session the patient is left with cleaned blood but still waste in their tissues. Between sessions, the blood gets loaded with newly created waste and some that has diffused from the tissue, hence the slow response that new patient show to dialysis.

I found these web sites very reliable for facts.
http://www.edren.org/pages/edreninfo/bl ... isease.php
http://www.edren.org/pages/handbooks/un ... alysis.php

I hope this helps a bit...