This is a blog post that has been so hard to write. There were a couple of occasions over the past few months when I didn’t know if I was going to be here to write it. Every time I thought I was getting better there was another twist and subsequent turn that meant I was more poorly than before. I did everything I could think of to get myself better, but in the end I needed an operation and dialysis.
So, as I said in my last blog post, my problems started in January. I had unexplained sharp pains in my body. In February I developed a chest pain and in April I was struck down with gout. I didn’t know it at the time but I was becoming very ill. If I look back now I can see I’ve had pretty severe weight loss since January. I was 7 and a half stone in January and now I weigh 6 stone 2 pounds. The gout that for most people lasts a few days didn’t seem to get any better and every time I came off steroids it flared, and I was in agony. By May I had extreme pain in my hands, arms, feet, legs. I joked that the only place I didn’t seem to have any pain was in my head. Though I had confusion and even the smallest things seemed to fox me. Running a business for me became out of the question I just didn’t have the energy or brain power. I have since been told by a rheumatologist that I probably had pain from the gout, I had calcium in my blood which caused pain and a nerve pain which went from my foot to my knee. I soldiered on, but I could not walk, I could not sleep, I was not functioning at all. Three weeks later I saw my consultant and his reaction when he saw me was ‘oh golly’. I was subsequently admitted to Southmead hospital.
Whilst all this had been going on I had been seeing another consultant about a malfunctioning gland in my neck. I had a scan which revealed a small tumour on one of my glands. This gland was due to be removed fairly quickly, but my renal consultant had decided that this was causing some of my symptoms and maybe all of them. Two days after being admitted I had an emergency operation to remove this gland. There are four glands next to the thyroid called the parathyroid (parathyroid means next to thyroid, but has nothing to do with the thyroid, confusingly). They thought one of these was not working. They did not think it possible that all of these were not working because for this to happen you need to have either been on dialysis for years or have had an extremely low kidney function for a prolonged period of time. My function was holding at 12%, so they didn’t think that this was possible. I had the operation, and all of the glands were malfunctioning. They had all gone autonomic causing calcium to be leeched out of my bones, (giving me bone pain) and then it was depositing the calcium all round my body, causing me other pains. This also becomes extremely dangerous once you reach a certain level and mine was at that level. The operation was a success and I felt much better straight away. I was sent home two days later. I did well initially, but soon I couldn’t walk again, although the pain was not as bad as before. I was just so weak and my legs were so atrophied. Two weeks after the op I went to see my renal consultant in a wheel chair. He was perplexed as to why I was still struggling to walk.
Four days after this I saw a rheumatologist. He thought that I needed dialysis to clean my blood and once that had happened I would be able to walk again. My renal consultant phoned me on the same day, he told me that for all the glands to be misfiring I must have had an extremely low kidney function for a long time. He had gone back through my results and decided that I had probably been below 10% for the last couple of years. He thought I had uraemia and it was this that had caused the weight loss, muscle atrophy, weakness, fatigue etc. He agreed with the rheumatologist that I needed dialysis, but I needed it right away. He was worried that the uraemia was atttacking my heart. I was already scheduled to have planned dialysis and an operation date had been arranged for later that month but my consultant said that this was not soon enough and admitted me to Southmead hospital the next day. At Southmead they did emergency dialysis putting a line in to my neck so the dialysis machine could be hooked up to me. The line went from my neck down to my chest. I was awake. I had a local anaesthetic, but I was so weak I felt like they were going to break my bones. I could hear the tube rubbing and being pulled through and then I was stitched up. It felt like I was awake for my own post mortem. I was traumatised and when my husband saw what had been done, he was traumatised too. I went straight down to dialysis. They asked me how much time had the line had to heal. I said an hour. It was a difficult day, probably one of my worst.
I have now been on dialysis for three weeks. In this time my body has gone into to a bit of shock, I have had extremely high blood pressure, severe anaemia and intermittent very high calcium. Lots of my blood results have been very poor. All have been treated with drugs and I’m hoping that I now will be able to get strong again. In the meantime, I have unfortunately been suspended from the transplant list. My weight is too low and they want to make sure my heart is strong enough for the transplant operation, my hb level also needs to rise as they will not do the operation with hb as low as mine. So, its been traumatic, and absolutely the toughest time of my life, (and I have been through my fair share). What I can say though is the people around me have been wonderful, beyond wonderful. I have been truly supported. My husband has been amazing, words cannot describe how brilliant he has been through some really exhausting and distressing days. He has cared for me while juggling his work and all the day to day activities that still need to be done and he has supported me throughout. Also My Dad who has taken me to nearly all my dialysis sessions (which unfortunately are in Cossham, Bristol which is 25 miles away so it makes dialysis days extremely long). My Mum and sister have also been carers taking the load off my husband. My brothers, Sister in law and nieces and nephews have all been there to make me smile and bring some much needed moments of normality. My best friend and cousins have been a constant support too, especially in the darker moments. A friend of mine sent me a care package with lots of amazing treats. A great aunt and uncle sent me some money to make sure I could buy good food to make me better, another great aunt and great uncle and cousin sent me money to go and get pampered. I have had lots of flowers from other family members. I have been overwhelmed by the support. To know they are thinking of me has helped me through some difficult days and I can’t thank them enough for their thoughtfulness.
My next step is an operation, (which is tomorrow) to have tubes put in my stomach for home dialysis. This will hopefully make my life a bit easier and then maybe, I will be able to get back to some semblance of a normal life and get back on the transplant list as quick as possible. For now, my business is on hold, I just need to concentrate on getting better. Then hopefully I will be able to return to the job I love, capturing special family memories on my camera, and making lots of happy memories of my own.
Thank you for reading my blog,