A bloody bad year

First, let me apologise for the scanty postings I have made to this blog. This reflects a bad year in my life and a bloody bad year for my haemodialysis. In March I had to put my mother in a nursing home. She had been at home with my father and her health needs were well beyond his capacity to handle. She was going downhill fast. Now my mum is getting professional and appropriate care and she has improved markedly. Adjusting to this new situation has been stressful for all my family members. My sympathy to all those of you who have gone through this experience, including those in nursing homes. My father has deteriorated badly. He forgets things immediately and gets stressed about it. Providing support to both my parents has been taxing. Added to that I have developed cataracts and have zero eyesight out of one eye. I am avoiding driving (doctor told me I wouldn't be covered by insurance) so have become dependent on the kindness of my family to get me around. All this has impacted my dialysis.

I had been dialysing five times a week at the beginning of the year. This dropped to three times a year as the weight of the problems I was facing got the better of me. Worse, the more frequent longer breaks between treatments lead to larger fluid gains which placed an unnecessary load on my heart. No problems yet but touch wood. I could have gone back to dialysing five times a week but my blood started clotting badly, mainly in the venous bubble chamber but also in the dialyzer. I was losing so much blood from clotting that I required weekly iron infusions. So on one hand I would get better results from dialysing five times a week but on the other hand I would become more anaemic as I clotted with each treatment.

Fortunately my anticoagulant agent could be changed. I am intolerant to Heparin so had been using Clexane. My specialist changed me over to Fragmin which unlike Clexane is not administered as a bolus at the beginning of dialysis but rather through the same regime as Heparin; progressively throughout the treatment via the Heparin pump. This has given me great results: the dialyzer is so clean that I joked with my renal nurses that I could recycle it, and the venous bubble chamber is always perfectly free of clotting or "collars". With a reduced loss of blood after each treatment I am feeling better. Now I am at the stage of going back to five treatments a week.

The main thing I learnt through this year? Talk. Always talk. Tell the nurses if you are blue. Tell them about problems. Also tell them about things that work. I just find talking to my renal support team is absolutely critical to getting the most out of my dialysis experience. Don't be scared that the question you have may be stupid; they will be glad to answer it, if they can. Even though my renal team only provided support for my dialysis needs they helped me through a difficult year in my life. Thanks to them. And I hope you will start talking with your team as well.