Half full or half empty?

 

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My daughter asked me an interesting question the other day. “Is your glass half full or half empty mum?”. I thought about this and started reflecting on my life. Do I think that I’ve been dealt some unlucky cards? Well yes if I consider that not long after I separated from my daughter’s father and trying to come to terms with my own drinking demons, I was then diagnosed with end stage renal failure and commenced on urgent haemodialysis. I was an  inpatient for two months. I had only just moved house and had no furniture or appliances. Finding a house on the private rental market close to my parents and whilst feeling ill was no easy task, but I struck lucky. I was then able to do APD, (Automated Peritoneal Dialysis), as it fitted in with taking my then 9 year old daughter to and from school. It wasn’t easy and after the first three months I felt well again. However, once my urine output reduced I began to feel nauseous and lack energy. I also suffered from excessive menstrual bleeding which reduced my HB to seven. We held off on a transfusion so as not to affect future cross matching for transplant. I then later contracted peritonitis and was admitted for two weeks. It was then I was informed I was under dialysed and had another line fitted and recommenced on haemodialysis. My daughter then had to go to my mum’s after school when I was at dialysis. Over the next few years my BP remained dangerously high, causing me to be admitted five times in one year. On many occasions my daughter didn’t know if I would be admitted and this had a big impact on her. Then about three years later my stomach began to swell and following my insistence it was fluid I had an ultrasound.  It was concluded my target weight was about 10 litres over. Once at my correct target weight my BP reduced and stabilised. During these years my mum was also diagnosed with breast cancer. Another battle to face. However, luckily it was treated and she has been given the all clear.
After three years in my other house we were lucky enough to find another private rented house that was better and bigger. However, not long after moving my ex partner passed away quite suddenly due to alcoholic encephalopathy and liver disease. It was one of the worst moments of my life having to break the news to our daughter. It was a terrible time for my daughter as she was only thirteen and had just started being ill with anxiety. Then my dad was diagnosed with bowel cancer.  Another anxious horrible time. Because of being surrounded by constant illness my daughter has developed terrible health anxiety. The last three years have been a constant battle to get my daughter the right support both in and out of school. It has been physically and emotionally draining.  I am lucky enough that my landlord allowed me to have the dialysis machine plumbed in to dialyse at home allowing me to be at home more for my daughter.
 Of course from time to time things still come to bite me on the bum. I have been unlucky enough to have three episodes of D & V in less than three months. I have recently had a bad experience when I had AVF Reconstruction surgery as I was in recovery all day due to no bed being available. At times I feel a sense of resentment for lack of sibling support and that not one of my five siblings have offered to donate. At times I resent my illness from preventing me walking as far as I would like and the constant lack of energy. I feel unlucky in that I had to refuse a transplant due to my daughter’s ill health. I feel unlucky that in view of family history I am more at risk of developing cancer. However, when I hear of others on their renal journey compared to some I suppose I am quite lucky. I’m lucky in that I can do home haemodialysis which allows for weekends away. I’m lucky that I have my own car and have decent neighbours. I’m so glad I had my child before I developed kidney failure. I’m thankful my parents are in remission from cancer. I’m thankful that I was able to beat my own drinking demons by pure determination and willpower.
I’m thankful I’ve not suffered a stroke from severe hypertension and that I can still walk.
So returning to the initial question. I suppose all in all my glass is actually half full.
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Hi I'm a home haemodialysis patient with experience of maintenance haemodialysis, A.P.D and P.D. My interests include reading, puzzles, and health education. I am also an ex nursing sister.

4 thoughts on “Half full or half empty?

  • Thank you once again Helen for your blog, you are always very honest and open and I admire you for that. As Rob says we knew a little of your story but this blog gives a broader picture. you are doing amazingly dealing with this as well as trying to be a mum at the same time, that can be difficult enough on its own. Maybe your siblings have there reasons or don’t realise you would want them to be tested, don’t be too hard on them as they may be finding it difficult too.
    I sincerely hope you get a Transplant soon as I do for all of us that are waiting, and hopefully are able to accept it too.

  • I can sympathise with your story as I’ve travelled a similar path in life. We all have to stay positive and make the most of our life no matter how exhausted and frustrated we feel. I am waiting for a transplant and like you can’t understand why my siblings have not offered a kidney but you know if they did offer now I’ve had time to think it through and I wouldn’t accept their offer for many reasons. Each day I hear of friends and ex work colleagues that have suddenly died young and I think we’ll I’m still meant to be here, it’s not my time yet and I’ve got a lot of life to live. My glass is more than half full. Stay positive. Hope your parents stay well and your daughter will get strength from you

    • Family dynamics are invariably complicated and I would never have asked my brother to donate, he had a young family and I didn’t want him to take the risk or feel pressurised. I think if family members fully comprehended the impact their donation would have on the recipients lives the question might be easier to ask.

  • I knew a little of your story Helen but wasn’t aware it was quite like this. The fact that you have gone through all of that and still manage to stay positive speaks volumes about your inner strength. Thank-you for sharing 🙂

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