My name is Neil Gibson I was diagnosed in 2014 with stage 3 AL Amyloidosis. I had never ever heard of amyloidosis before this.
My prognosis was not good, a matter of months and if it hadn’t been for the CCC, Carmel in 2E outpatients in PAH, convincing me to start chemo, as I was a bit reluctant in the beginning, I would not be here today playing golf and leading a normal life.
So how did we, my wife and I, manage at diagnosis? We started the bewildering task of reading all the information given to patients, such as amount of salt sodium in my diet. That was an eye opener. Going to the supermarket and starting to reading labels for sodium. I could not believe the amount there is in almost all our regular items.
As I had fluid in both legs up to my knees, unable to wear shoes because of my swollen feet, salt and fluid was my main concern. I stuck religiously to my allowance of 1500 mils per day. Lucky for me it was in winter and most times I managed to cope.
My next concern was swallowing food, I had a swollen tongue and was unable to swallow anything of any substance, also I had lost my appetite due to either the chemo or the disease. I wasn’t that fussed on food. My wife had been a nurse for almost 40 years, so it is thanks to her as well as the PAH CCC that she worked out our program for a daily routine.
I’m hoping this article recounting my experiences may help new patients to get into a daily pattern of getting to know their limits and help them take some control of their health again, as when first diagnosed it is mesmerizing just to understand the disease never mind taking in all the does and don’ts.
So I have listed some helpful hints that we worked out over a number of weeks.
- Wake up, that’s the important one.
- Write, record your weight you have to know which way you are trending up or down.
We kept a daily diary, recording weight, fluid intake such as water tea, coffee soup, ice-cream all fluids. (It is easier if you get a 200mil cup, and count each cup at the end of the day you will know if you are under or over (, take) your limit.
I basically lived on soup for a number of weeks, until we bought a Magic Bullet liquidizer. This was the best thing helping me get some real protein back into my system. As I could not swallow we blended stews to form a soup the best one that I enjoyed was steak and kidney. Don’t laugh it doesn’t sound good but was really tasty.
Because I had kidney involvement most of my protein was escaping through my bladder, so using the Magic Bullet I made my own protein drinks it consisted of my basic 200mls cup of full cream milk two desert spoons full milk powder one desert spoon of egg powder (available at super market) and Milo, (I found it cheaper than buying them in a store.
With the swollen feet and legs my doctors wanted me to wear compression stockings. Unable to get them on without a big struggle my wife came up with the idea of woman’s tights. This was a god send as it gave my feet and legs structure easy to get on and off, I wore them for 6 months, until the fluid left my body and gradually improved over time.
I hope this will be of benefit to new patient.
I realize that every patient is different even if they have the same type and stage of amyloidosis. It is therefore important that you talk over any of the tips I have suggested with your doctor before trying them yourself.
If other patients have any tips they would like to pass on to my wife and I we are always ready to learn.