My mum started haemodialysis 4 months ago. Everything started really well, we all noticed a great imrovement in her. She was literally shrinking before our eyes as all the fluid was removed, this in turn helped her breathing, appetite, sleeping and mood.
However, the last 6 weeks have been awful for her. She's been experiencing symptoms that were believed to be those of a panic attack whilst undergoing dialysis, so they've been trying to treat it with diazepam...but to no avail. They've since informed us that my mothers symptoms are in actual fact a physiological response to the act of dialysis itself. Her blood pressure drops, her oxygen levels drop and she has the uncontrollable twitches. The medical staff have advised that the dialysis process is proving to be too harsh for her and that she needs to undertake a gentler dialysis at a different unit (20miles from home).
Has anyone else experienced this? Will it get better? It's making my mum very depressed and resulting in her avoiding attending dialyisis regularly. I'm concerned that if it continues she may stop going all together.
Thank you in advance for your responses.
Written by
burnie82
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I'm sorry to hear about your mum's experiences it mut be a stressful time for all of you no doubt. Having been a patient for many years both dialysis and transplant have no direct experience of the symptoms your mum has had but could possibly offer some advice.
Firstly, your mum should not be missing any dialsyis sessions, things wont get better if she regulalry misses sessions.
I'm assuming that the present unit do not ahve the dialysis machine to perform the 'gentler' dialysis which is a shame, you should get the healthcare team to discuss this with your mum and yourself this option in more detail as this may allay any fears she may have - it's likely that this machine will be better in the long-term. Such a discussion could also explore the idea of your mum receiving counselling/support from the hospital to help her overcome this difficult time and find ways to cope - this is particularly importnat given the concerns you raise with your mum's potential future attendance.
Alternatively have other options been explored i.e. slower pump speed? Also has your mum been sticking to her fluid restriction? The more overloaded a patient is before haemodialysis, more fluid has to be taken off, and the session can then be quite uncomfortable with fall in blood pressures common - I'm sure this has already been explored though.
These are just some thoughts that you might like to consider if of course you haven't already done so.
I hope things improve and your able to seek the support of the healthcare team? If you are still concerned or things continue unresolved I would advise you to contact the NKF national patient helpline (free phone) 0845 601 0209 who would be able to put you in touch with an Advocacy Officer who covers your area. The Advocacy Officer can provide support, advice, and guidance, in a confidential and sensitive manner, and is totally independent.
I'm sorry to read this about your mum. It must be as terrifying for you to watch her go through such an experience. Can I suggest that she tries some counselling. If a counsellor can help her develop a strategy to deal with her panic attacks then life on dialysis should easier for her to cope with. I found that I was grieving for the life I had before dialysis and didn't seek help and did end up developing depression. I went on to receive a transplant which is now failing and this time I'm going for counselling to help me deal with my fears. I hope things improve soon.
I suffered from all kinds of unpleasantness when I started haemodialysis, including twitching and panic-like symptoms. As time went by, my body and mind both got more used to the process, and I now have few problems. I hope the same happens for your mum. A positive attitude definitely helps; I had to have counselling before I could begin to be positive. Good luck.
Thanks everyone for your responses. It is refreshing to know that everyone's experience differs and that with perseverance and a little bit of luck things will hopefully improve for her. Kibbi90, you've hit the nail on the head. My mother is too grieving for the life she once had. There have been promises made to refer her to a clinical psychologist who works with the renal team, but thus far this hasn't materialised. I'm meeting with her consultant this week so will be sure to follow it up.
WaterBob, you don't know what a relief it was to read your post. If there's at least one other person out there that has experienced what she is experiencing and has overcome it, well that gives me all the hope I need.
I'm very sorry to hear that your mum is having such a hard time. Dialysis is never easy. It basically runs your life. But with the right doctors, the right care and support from her family, she should start feeling better. Good luck and God bless your mother.
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