In 2017 I was diagnosed with and treated for Philadelphia Positive ALL. I had 3 lot of chemo and and a fully matched unrelated SCT.
Since then I was diagnosed with Chronic GvHD, of which the worst part is restrictive pericarditis. This causes the sack around the heart to become inflamed and prevents the heart from full expanding after pumping. The effects I have from this are shortness of breath when walking along anything that isn’t flat or going down. And excess fluid in my body, which mostly collects around the left lung.
I have now had 3 periods where I have had to be admitted to drain the fluid which has collected around the left lung.
It feels like each time this happens I cope with it less well and was wondering if other felt similar.
The first 2 times were urgent admissions and the most recent one (end of Feb 2019) was planned to try and stop this from reoccurring. I had a procedure to insert a semi permanent drain into my left lung, which was successful and the drain is working well. However, my body didn’t react too well to the anesthetic and I have spent a month convalescing at home trying to get rid of the 8 litres of fluid that has accumulated in my legs and abdomen.
I have wonderful family and friends, but have been finding it hard and at times I have had feelings of despair and not knowing how to carry on. I don’t remember feeling quite like that before.