My Life In A Nutshell

MONDAY 2ND JULY 2012.

Dont worry, im not expecting you to know why this date is of any significant value to anyone as it doesnt have one. This date though is the last time i blogged about my medication. The treatment that keeps me going. In 2012 i was with consultants that really wanted to start from scratch. Reduce nearly all my meds and find out the best ones from me. That didnt happen. Instead, they started adding more in.

Today things are worse than before.

During a 24 hour period i take on average 64 tablets a day, 16 nebulisers minimum. A salbutamol inhaler. A nasal spray. A tablet inhaler twice a day. A TENS machine, morphine patch. Supplements and im also now on sub cut IgG infusions of 60mls a week.

I wish my life was counting other things instead of drugs, oxygen reading, pulse reading and peak flow reading.

I guess being in the UK i am extremely lucky, my medications get funded by the NHS and the government. I really feel for those in other countries that have to pay for their treatments and its in the thousands. If their insurance wont cover it, how does the government expect them to get the vital medication they need!?

I know one things for sure, if i didnt have this list of medications, i would be dead. If any asthmatic didnt have one single inhaler, they would be dead.

Asthma needs to be more recognised. I have been doing this blog now for near on 2 years and in those 2 years. Ive literallt have my blog viewed thousands of time. I just pray that just 10 of those thousands of people have gained a little more knowledge into the life of an asthmatic. That they can see its not just a few puffs of a blue inhaler. Its time consuming, mind and bodily draining, its demanding and most of all its life threatening.

Asthma needs a cure, can you help find it!?

_____

On a different note, depression, this also is very life threatening and not enough people know about it. This week, Tuesday infact is my wifes 21st birthday and suffers from severe depression. With our housing situation this has meant that things have been getting worse again. I didnt know what to do, how to help her so,i gave her an early birthday present that she can focus on, and give a purpose of living for. I got her a guinea pig. We still dont have a name for her but she is 9 weeks old and such a character. Today is her first day with us and in ta time, she has climbed the curtain 3 times and climbed up the inside of my trouser leg twice. Shes blinking fast thats for sure

Well, i better be off, i have those drugs to go take so i can make it through the night as i am currently suffering yet another chest infection.

TTFN
XXXX

Here is a visual look into my medications and below is our latest family member, the nameless guinespig class="separator" style="clear: both; text-align: center;">

My Last Hope

Since being told in January that there was nothing left for me, nothing left trestment wise to help my asthma i was preparing for each year that went by for ny life to get worse. My lungs to get worse. Thankfully ive been given a lifeline. I change my local consultant when i move to Cornwall and they have done tests that show i have PID which is primary immune deficiency. As i have this, they have said this is the reason to which i am getting around 15 infections there abouts a year which is not only causing my asthma to flare but also my lung function to permenantly be done and ive now built up huge amounts of irreversable scar tissue in and around my lungs. It suck. The worst thing about it all is this could have been solved years ago. I first had this picked uo 4 years ago but was told there was no treatment when in fact therevwas and there still is. Im just so glad I moved to Cornwall as it now means ive been given hope. So my new treatment IgG transfusion. Its pretty technical stuff and again as I said before, without wonderful blood donors, my life wouldnt be able to have this. Each 20ml of my treatment is a few thousands worth of donors bloods and each week I will be recieving 60ml and that is for the next year alone. If the treatment shows improvement I will be staying on this untill they find an alternative. This could be life. For my first ever treatment, me and my wife watched the nurses set everything up and put the needle in my belly. Next week though its our turn. We will be taking a hands on aproach so that the quicker we learn how to set up the pumps and do everything in a safe manor, the quicker I wont have to keep coming to derriford hospital. Each infusion takes an hour to go through. I can only have a maximum of 20mls through each pump at a time into that specific area of my tummy to prevent damage. Yes it take a long time to go through but once its running, youre free to do what you like, well withing reason. On this occasion, I did have a reaction to the blood product but this was to be expected as it was a foreign body being placed into the skin surface of my belly. Today it is still pretty red, sore and bruised but itll settle. Im just praying this is the miracle treatment that could give me some form of life back. Im not banking on my life to be exactly the same as 5 years ago as thats impossible, I have far to much damage, but even if im semi there I will be impressed. Here is a picture of my treatment

TTFN XXXX