Gerry’s Amyloidosis story

“You’re just constipated. We’ll empty your bowels and send you home. “ This is what I was told twice by staff in Emergency over a two-year period. I was in Emergency because during that two-year period I was having bad stomach cramps, so bad that I took myself to Emergency. After my 2nd Ed visit my GP thought there must be something else wrong, so he sent me off for various blood tests. One came back which indicated that there was something wrong with my kidneys. He ent me off to a kidney specialist who did a number of tests and told me that my kidneys were damaged. I think he knew what the problem was, but he sent me off to a haematologist to confirm it. After further tests, which included scans and biopsies and a congo red test, he confirmed that I had AL Amyloidosis with kidney impairment.

This was a shock to me as, like most of us, I had never heard of Amyloidosis. I considered myself fairly healthy, I was physically active cycling to work regularly over the past thirty years. I asked if I had any symptoms. The haematologist touched my ankle which left an indent indicating there was some fluid retention due to poor kidney function. He then gave me an option. Either do nothing and you will most likely be dead in five years or take some treatment and then you will have a good chance of living longer than five years. (n July 2021 it is ten years since I was diagnosed. I have enjoyed the extra life the treatment has given me, although with fatigue issues.

The treatment began with a combination of various amounts of three tablets; Cyclophosphamide, an oral chemotherapy; Dexamethasone, a steroid; and Thalidomide which was used for “morning sickness” in pregnant women. Due to this, I had to sign a document saying that I would not have sex with women of childbearing age.

Over a two-month period, various combinations of these drugs were tried but all had uncomfortable side effects. Eventually my haematologist said we had to move to plan B which was something he had not mentioned before.

This treatment was an autologous stem cell transplant. This treatment started with the harvesting of my blood cells. Before they were harvested, I had to inject myself with xxxxx daily in order to build up good blood cells. The harvesting took one and a half days to collect enough cells for two return transplants if required. The next step was to receive a high dosage of Melphalan chemo, which caused my white blood cells to be drastically reduced. A few days later, my harvested cells were returned. During this process I had to chew on ice so that my mouth wouldn’t dry out. I was given a letter to take to Emergency should my temperature reach 38 degrees. I was told, due to my reduced white cells that I in danger of catching any illnesses I may come in contact with.

I had to return to the hospital regularly for check-ups. On my third check-up my temperature was recorded at 38 degrees, so I was admitted to hospital immediately. It took staff a while to find me a suitable room as I was neutropenic, ie: easily susceptible to infection and needed a single room with en-suite. That night I woke up around 2am to use the bathroom and on returning to my bed I collapsed in the middle of the en-suite and could not move. I saw the emergency buttons to push but could not reach them. Luckily I heard someone walking outside and feebly called “HELP”. It was a nurse and she immediately called a Code Blue. This meant that all available doctors attended the scene. I could hear them talking numbers which seemed rather high to me. They were concerned if had damaged any limbs when I fell but I was OK from that perspective. I was admitted to ICU where I stayed for four days. While there I had a nurse beside my bed 24 hours a day. It transpired that I had internal infections such as septicaemia. My wife came into visit each day and commented that there were six or seven of bags for drips hanging over my bed and a port on each side of my neck to receive the infusions.

On returning to a normal ward, I was surprised that I had real difficulty walking even though I had only been lying down for four days. A physiotherapist helped me recover my walking ability. I ended up walking around the corridors of the hospital to regain my strength in walking. My stay in hospital lasted three weeks which was not very pleasant. I had trouble eating which I continued when I got home. When I was apparently ready to leave hospital, they held me back a few days as my Creatinine level was too high. This is an indicator of the kidney health and should be below 100. On departure it was 167. During the nine and a half years it has stayed steady at around 150. The lowest it has been is 134 when I last had my bloods tested a few months ago. During my stay in hospital, I only lost hair for one afternoon when I scratched my head I could pull some tufts out. I guess this was due to the chemo.

I was not able to return to work while I was recovering from the SCT. I ended up taking a year’s sick leave and then returned to part time work, but even this proved difficult to maintain and I eventually retired in August 2013 at age 65.

As mentioned earlier, when I did return home, I had trouble eating for quite a while. I could eat sweet food but mush cooked food I struggled to eat. For about a week all I could eat was Nasi Goreng bought from a local shop. As I improved over the following weeks, I started eating regular food again.

One lasting effect that this process has left me with is lack of energy. I could then, and still now not walk for more than 500 meters without an aid – eg: a walking stick. My doctors encouraged me to be active. I am still an active member of a four-wheel drive club. Knowing that I couldn’t walk far, a fellow 4wd club member suggested I try kayaking. To my surprise, I was able to do this and have kept it up since. In fact, I am now regular member of the Mandurah over 55 kayak club and paddle every Monday. This consists of an hour paddling, enjoying morning tea on the banks of the river and then paddling back again. I am normally the last one to return, in front of the tail paddler. I am also incredibly grateful for the help my fellow kayakers give me in getting my kayak to the water and then back on the car.

I have now also joined two “pole walking” groups and partake in Park Run every Saturday.

With Park Run, I use my walking poles and it takes me about 54 minutes to complete the five kilometres, at which point I am quite fatigued.

My ongoing health maintenance consists of six-monthly visits to my Haematologist and Neophrologist.

Gerry’s Amyloidosis story – Gerry – Australia