Tuesday, 12 April 2011

The Other Side Of CF.

I have added a page at the top of my blog, which is titled my 'CF Daily Routine.' It's just a guide as to what living with CF is like, all the medications and treatments I have to do daily, just to try and stay alive!

Cystic Fibrosis is not the only problem I have, although most of the others are related and it's because of CF that I have them.
I was going to post a link to something like wikipedia, but after reading the CF page myself, I think they should make a 'thickipedia' using much more normal words, lol! Seriously, the amount of long-winded, medical terms they use on that website, I understand some of them because of being around hospitals and doctors using those terms all the time, but some of the words baffled me and I've dealt with this rubbish for 20 years, lol!!
So here is the other side to CF written by yours truly.. :)

One of the biggest problems I have is something called 'CF Related Diabetes' which I was diagnosed with 9 years ago. CF related Diabetes is not the same as normal type 1 or type 2 diabetes, it is actually a combination of both. I use insulin to control my diabetes and a 'diet restriction' is not recommended for me, due to the high calorie/fat intake I need, it is more important to control the diabetes with extra insulin than to stop eating certain foods.
When I get a chest-infection my sugars become higher so I have to adapt my insulin intake with how well, or unwell, I am. Also when my sugars aren't controlled, I lose weight.
I also sometimes need steroids to reduce inflammation in the airways, making breathing easier and to help with infections, however, steroids make my sugars sky-high so this was something I couldn't have until recently. For these reasons I've worked really hard to get my sugars under control and it's now no longer a factor stopping me from transplant. They had said if my sugars were constantly high I would not be able to be listed, mainly because after transplant you are on steroids permanently, so my sugars would need to be controlled enough to deal with the constant steroids.

CF also affects the digestive system, I'm lucky that I've never had any bowel blockages or anything, but this can occur in people with CF. I have to take enzymes with almost every item of food I have, to help break down the fats in foods because my own body doesn't do this, without these tablets, the fats would pass straight through me and would mean I might as well have not eaten because it does me no good! If I forget to take the tablets with even something such as a bag of crisps I get severe belly pains which are sometimes so bad I'm sick. So, these tablets are so important! I can take upto 30 a day, 3 with each meal, then 1-2 with snacks, so depending on how much I eat through the day, depends how many tablets I need!

Recently I was also told I have the beginnings of liver disease. I have an enlarged liver, so have to have routine ultrasound scans to keep an eye on things. Bile which is released from the liver to help digestion can block the bile ducts, which lead to liver damage, this can over time lead to scarring. The liver fails to rid the blood of toxins and doesn't make the necessary proteins which are responsible for things like blood clotting. This is one of the biggest signs that I have liver disease, my blood clotting levels are quite low so I am having extra vitamin K to help with this. Liver disease is the 3rd most common cause of death in CF.

I also have very weak bones (basically, osteoporosis) meaning I have to have bone-strengthening drips, which cause severe pain in my bones that can last up to 3/4 days. This is something I have to have every 3 months, if my bones are not strong enough, I might not be considered a good candidate for transplant.

I also suffer with horrible heartburn, due to acid reflux and have to take tablets everyday to ease this.

Another thing is that some of us can't have children. 97% of men with CF are infertile and due to things such as malnutrition, some women with CF can also be affected.
I, myself have no idea whether I am infertile but I have been told that if I was to get pregnant, my chances of being alive by the time the baby was born wouldn't be too high! Also after transplant my team have said there are quite a lot of complications, so my choices are either surrogacy or adoption.
Luckily, I've never been one of those girls who ever saw myself as a parent, but I can't help but think 'what if.' The love I have for my doggies is so strong I think I'd actually be a really good Mum, but obviously until after transplant I have no plans on having children, for my own health :)!
I wouldn't want to risk not having a transplant and leaving behind a baby without a Mummy.

So there you go, CF and the rest of my problems try to break me down and I admit, sometimes I let it. I'm not afraid to cry and I'm certainly not afraid to admit I need help, I've struggled in the past with my emotions, there were times when I was so angry at life and many times I wondered "why me?" I've suffered with depression due to the way my life was changing because of my health, I barely had a social life before I was with Josh, because I was usually too exhausted to do anything. I'd always imagined that I would be at university, studying to have a successful career, but instead I am stuck at home everyday, living off very little money - a million miles from where I would have liked to be.
But I know that life throws many curve balls and there are always hurdles in the way of your dreams, but these are the things that make us stronger and when you do eventually achieve those dreams, they will be all the sweeter, mainly because you've worked so hard to get there.
This is how I am viewing transplant, I've worked hard to gain weight, sort out my sugars, strengthen my bones, keep my liver disease at bay and I've worked hard to try and get my lung function up and I'm going to continue working really hard to get on the list, then it will be a matter of waiting for that phone call, the wait could be very long, or it could be very short, but I know that when(!) I do get the transplant, I will be so proud of myself for overcoming the odds and all the hard work will be totally worth it.


Thanks for reading!


Tori said...

I have an enlarged liver too :)

Gemma said...

Great post really interesting and informative but most importantly in English :)
Love your blog btw as a mum of a cfer I'm learning all the time so thank you for being so Frank and honest but still staying positive even with all your struggles.
I wish you all the luck in the world that you get your call and can enjoy a long and happy life with Josh.

Us parents really look up to you guys and gals with cf so no pressure ;) seriously thank you to you all for sharing such life changing events with us.