My Name is Coral and my symptoms started on boxing day 2001 when I woke with swollen ankles and a pain in my chest.
A visit to A&E, admission to hospital and a kidney biopsy confirmed the diagnosis of AL amyloidosis. I was 39 years old and had until then been very active and healthy with 2 young children aged 9 and 13. We had never heard of amyloidosis but the seriousness of such a diagnosis was quickly brought home when we were informed by the doctors that “ I was running out of time” and an autologous stem cell transplant was suggested to try and stop the disease. What a shock! Our lives were transformed over night from ones of happiness and dreams for the future to ones of fear, sadness and the unknown.
From the very first injection to stimulate my stem cells I became tachycardic and my kidneys stopped working properly. I ended up in ICU where there was a race to stabilise my condition. My wonderful renal physician gave me hope when he said “I have seen worse”.
My girls were only allowed to visit me for very short periods of time and it must have been so scary for them to see me attacked to so many lines. But my husband Patrick and I tried very hard to explain in language they could understand what was happening and how sick I was.
Eventually enough stem cells were collected for one transplant. Unfortunately the first bag was contaminated which was another blow. After spending the next month in hospital recuperating, my stem cells, which had been stored, were returned to my blood system through an intravenous infusion.
Read: High-dose Therapy and Autologous Stem Cell Transplantation
The nausea was indescribable and then I ran into many other medical problems and was rushed into ICU once more with internal bleeding, accumulation of fluid and very low blood pressure. Slowly my wonderful medical team began to control some of these life threatening issues and I was able to return to the ward where my renal physician felt I should see more of my children and ordered a desk and chairs so that they could visit me after school and do their homework! What a blessing that was. They even got to stay the night.
My husband Patrick had just started a new job. He immediately had to adjust his life to looking after the girls with the help of my mother who had dropped all her activities to come and help. Patrick came into the hospital every morning before work to help me shower. It was the only place we could be alone together, to cry and hold one another and I will cherish those times for ever.
As I slowly recovered in hospital from the stem cell transplant I used to imagine what it would be like to see my children graduate and get married as my future still seemed bleak.
I celebrated my 40th birthday while still there but eventually got home after 4 months followed by a few admissions for pneumonia. It took quite a while after discharge for me not to panic when little things didn’t seem quite right.
But gradually I improved and from mid 2002 to 2008 apart from visiting the hospital for check-ups and dealing with symptoms of early menopause and osteoarthritis, my blood tests slowly returned to normal. It was during this time that I wrote letters to all my family telling them how much I loved them and how I really felt in case I wouldn’t be there to tell them in person in the years to come.
In 2008, just when life was going along well, a phone call from my haematologist threw our lives into chaos again. My light chains were rising and other blood levels indicated a diagnosis of myeloma as well, soon confirmed through a bone marrow biopsy.
I was started at once on oral revlimid, a derivative of thalidomide, which stabilised the situation quite quickly allowing me to see my eldest daughter graduate from university and marry. How fortunate I felt to be at her wedding.
But by 2011 the revlimid had ceased working and my haematologist suggested another stem cell transplant. That was a very hard decision remembering what I had been through the first time but I was fitter this time and there seemed to be no other treatment that could put me back into remission again.
But there was a problem. All my collected stem cells had been used for my first transplant so I needed more. This proved to be a far more difficult procedure than planned. After a month in hospital constantly having needles, I understood enough stem cells had been collected. I was shattered to be told that more needed to be collected.