I too had a problem motivating the local hospital. I knew that the Cardiac consultant (and possibly my GP) had received a letter from the Royal Free. The problem I had was that the consultant wasn't contacting a haematologist. Until that was done, the Royal Free wouldn't move forward. I attacked it in three directions! I asked the very efficient HF nurses to chase the consultant. I asked my GP to do something, but they said they couldn't do anything. Lastly, I contacted the Royal Free and explained my problem. A senior haematologist said he would contact my local hospital to get things moving.
Between them something has happened! Earlier today, I was asked to go in tomorrow for a few days to get a bone marrow biopsy, CT scan and other tests. A haemotologist, with experience of amyloidosis has been appointed and details of treatment planned!
Here is my very brief timeline:
- January to August 2020 - Suffering from Pulmonary and Peripheral Edema. I thought the Pulmonary Edema was a worsening of my COPD! All GP did was check for covid!
- August 2020 - GP sent me for a chest x-ray and the Edema was diagnosed. One week in hospital on twice daily injections of Furosemide.
- September 2020 to March 2021 - Various appointments with HF nurses who confirmed that the Edema was because I had chronic heart failure and right ventricle failure.
- April 2021 - HF nurse suspected Amyloidosis from various scans. Therefore, I was sent for an MRI scan at Papworth. This strongly suggested Amyloidosis.
- June 2021 and July 2021 - Appointments at the Royal Free Hospital. After various tests - SAP, DPD and MRI scans, with a radio-isotope injection and a "stomach" biopsy, AL amyloidosis was diagnosed. Letter outlining treatment sent to local hospital and to me.
- August 2021 - After a few weeks delay, contact between the haemotolology departments finally made! I am now having a few days in hospital for a bone marrow biopsy, CT scan etc.
For about a year, I have been taking various diuretics - mainly Bumetanide, but also Spironolactone and Metolazone (weekly). I don't think I now have Pulmonary Edema, but my legs/feet are still bad with Peripheral Edema. I am hoping that the Edema or my low blood pressure will not prevent me having my chemo. But I have faith in the haemotologist and heart failure nurses to do their best.