It is now exactly 12 months almost to the minute since I watched the bag of stem cells slowly drain into the Hickman line. It's been a very eventful 12 months to say the least. Since my last post 9 months ago I had a difficult end to 2019. I was hospitalised for pneumonia in October which turned out to be a fungal infection. I was given powerful broad spectrum antibiotics before the correct diagnosis was made after a bronchoscopy. A particularly unpleasant procedure during which I felt as if I was drowning. I was discharged after 10 days. A week or so later I started vomiting and had diarrhoea. C. difficile was diagnosed and after a week of Vancomycin at home I went back into hospital feeling very unwell, a bit scared and rather desperate. I wasn't able to eat and was losing weight and becoming increasingly weak. After nearly 2 weeks of this and, at times, thinking that it would be a blessing to not wake up, I had a sigmoidoscopy and GVHD of the bowel was diagnosed. The C.difficle had gone and I was put on to steroids. The result was an overnight end to nearly 4 weeks of diarrhoea. By now I was very weak and had lost nearly 2 stone. I was discharged again and began to recover. Long story short I was subsequently in and out of hospital with chest infection, severe oedema and was still very poorly, although I managed to be home for Christmas. New years eve in hospital was a rather bleak moment. I was last discharged on 7th January. By then I had been diagnosed with heart failure which was a blow, but I was home and began my recovery.
6 months on and I am feeling really very well. No transfusions since last year. No more cyclosporin and the consultants at QE Bham are pleased with my progress. All my blood counts except for platelets are near normal. I am able to go through the day without afternoon sleeps, my weight is a few pounds off 'normal' and I can even enjoy a glass of wine once more. I do not know where I am with the heart failure as the Covid crisis has meant I can't go to hospital for tests but the medication seems to be working well.
I am so thankful for where I am now and have (cautious) hope and optimism. I went through the mill, but I came out the other side, and life is good. When I think back to how I was in the months before transplant, with splenomegaly, night sweats, weekly transfusions, fatigue and a growing sense of despair I am now in good place. I feel as if I have my life back. I am so lucky. The NHS and its people are simply wonderful and I can never thank them enough no matter what happens from here on in.
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Dodders
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Hi Tim, thanks for the update. I have been wondering how you were getting on. Congratulations on navigating your way through the mill and making it to a significant anniversary with optimism for the future. Keep it up! Simon
Hi Dodders, what a story! You have certainly been through it. I’m so pleased to hear you are coming out the other side. No doubt there will be a few more hills to climb but with your attitude I’m sure you’ll push through.
Really glad for you …. a wonderful gift of life which I think , despite your difficulties, will encourage people who are feeling as you did pre-transplant.
Congratulations on your 'anniversary'! You have been through the mill. So glad to hear you are in a better place now. Thank you for posting as I'm sure it will give hope to a lot of other people on this forum. Best wishes.
Well done. It is a tough road and can affect us all in different ways and to different levels. You have had a particularly rough time but you can now benefit from your treatment. Onwards and upwards. Chris (non Jedi version). Now nine years out.
Hey Dodders , , A very Happy Re- Birthday to you. . . It's such a milestone to celebrate your first SCT Anniversary especially when your journey there has been marred by setbacks. But you've battled your way through and I'm pleased that you're now in a good place (heart issue apart) . . And as time goes on your pre transplant symptoms and post transplant traumas become a distant memory.
It's a good feeling to get your life back and enjoy living again, just a pity Covid is putting a damper on things just now.
I'm on the train to B'ham to have blood work done, and hopefully see a consultant as I've not had a face to face for a couple of years, I think! Overall I remain really well with the only 'issue' being fatigue; during the afternoon I more often than not feel an overwhelming need to take to my bed and sleep. I shall certainly be asking about my ferritin assuming it is still high as I believe by this can cause fatigue as well as other issues.At any rate I continue to count my lucky stars. I thought I'd look back at some of my posts whilst on the train, including the one above and having done so I see that I never said thanks to all the encouraging comments and good wishes, so here's a very belated thank you to you all. It's hard to imagine what it would be like if there was not this community with whom, from time to time, I can interact with and feel part of.
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