Desperate times call for desperate measures

Me in somewhat better days

Desperate times call for desperate measures.

This is the post I hoped I would never have to write, but as the title implies, I’m desperate!

As those of you who have been regular visitors to TSM would know, I have lung disease, and any who have read my comments of late would know, my health has been deteriorating greatly over the last few months.   😦

Breathing is one of those natural things that we all take very much for granted, until we struggle to do it, at which time we realise that it affects everything we do, and every aspect of our lives.   😯   Hence the the Lung foundations motto “When you can’t breathe, nothing else matters.”

Now, for those that are not familiar with my illness, let me explain.

About 15 years ago, I was diagnosed with a degenerative lung diseasea which is rare genetic form of emphysema called “Alpha 1 antitripsyn deficiency“, which basically means that the protein (Alpha 1 antitripsyn) that predominantly protects the lungs and liver from enzyme damage, isn’t produced by my body.   😦

It is different from other forms of emphysema, as it is not caused by smoking, but by having both parents being carriers of the defective gene, which mine are   😦   , meaning that I won the bad gene lottery, inheriting the worst kind of Alpha 1 (type ZZ).

My specialist originally picked it up on a high resolution xray, because normal emphysema starts in the upper lobes of the lungs, whereas Alpha 1 starts in the lower lobes.   He then sent me for a genetic test which confirmed our worst fears.   😦

Because the protective protein is absent,  the air sacks within the lungs are attacked and degraded by the aforementioned  damaging enzymes, and lose their ability to maintain their shape and elasticity, eventually becoming saggy and ineffective at transferring oxygen into the blood stream.

For example, my BI has the normal version of emphysema, with less lung capacity than mine, and still a smoker, yet he maintains blood saturation levels of 96 -97%, whereas mine, at rest are around 90 – 91%, and, of late, regularly drop as low as 82% if I try to walk more than a few steps at anything more than a slow snails pace, and are often down to 77% briefly, at which time you feel bloody awful.   😡

And the question is why am I telling you all this?

Well when I last saw my specialist, around three months ago, he recommended that I try to get a portable oxygen concentrator, to help with my mobility, but since then  my condition has deteriorated further, to the point where I also now  need , a portable electric wheelchair to get pretty much anywhere   😯

I do have a home oxygen concentrator (Which extracts medical grade oxygen from the air), supplied by the good people at MASS (Medical Aids Subsidy Scheme), which I am using right now as I type   😯   ) and a wheelie walker     but all they can offer me, is to replace my concentrator with portable oxygen bottles, which are no good for me, as I have no upper body strength left to lug them around; and they cannot tell me when they can get back to reassess me for a wheelchair, which I may not even qualify for anyway under their criteria, as they are grossly under staffed and under funded    😯

The problem that I have is that all medical equipment has a price premium attached, and with the governments cuts there is little option for people like me, on a part DSP.

The other problem is that with basically no upper body strength, I need a concentrator that is powerful but small and  light, so that I can carry it with me, and there are only 2 that fit the bill, both are new technology, battery operated and weigh around 2 kg which is about as much as I can carry   😦

My oxygen script at rest is for 2 ltrs per minute, but I need a unit that can deliver 3 – 4 ltrs per minute when I’m walking, or doing anything remotely strenuous, and these 2 units are the only ones that I’ve found that meet my requirements, and they range in price from around $4,000 – $5,000    😯

These are the only two options that I’ve found, that suit my needs.

Inogen One G3

The need for the wheelchair has been highlighted over the last few weeks, as we have had a number of visits to the hospital, where my wife has had to borrow one, to get me from the car to the clinic, as I just can’t walk there   😦

But she is only small, and due to my lack of fitness, and ability to exercise, I’m over 105 kg which means that she really struggles to push me up even the slightest incline

And I am now at a point where to walk anywhere is quite dangerous for me, as my respiratory physiotherapist warned me,  extended periods with blood sats below 90% can result in organ damage, including brain damage (although some would argue, that ship has already sailed     😕     ) and even heart attack   😯

So I really need a strong but light weight electric wheelchair that can be easily folded and lifted into the car, but small enough and powerful enough to get me around   🙄

They range from around $3,500 – $4,500 new, and a bit less second hand , when available?   😯

There are a few, but this is one of the better options, for my needs, that I’ve found;

Now I know that TSM is only a small site, with a small, but loyal, following, and I have agonised over whether or not to ask for help from people I consider friends, but as I said, desperate times call for desperate measures   😦   So I am appealing to those of you that can spare a little cash,  to help if you can?

My goal is to raise $10,000 for the equipment that I need, including delivery costs and any necessary extras such as spare batteries etc.

Which is a lot of money for me, but if just 200 people could donate $50.00 each, then I would reach my goal.

I use those numbers as an example only, as I know for me even $50.00 is a lot of money, so any donation would be gratefully received, and personally acknowledged by email.

I was originally hoping to record my song “Canopy of leaves”, to offer for donations, but sadly, what I have often referred to as “terminal porridge brain” is becoming an ever present problem, due to low blood sats, making concentration harder and harder for me   😡   so all I have at this time, is my poetry and writing.

So as an added incentive, if any donors of $25 or more have a favourite poem, and email me,  providing details of their donation, favourite poem etc,  and a postal address, I will endeavour to print out a copy on quality parchment paper, laminate it and post it ASAP.  (As porridge brain allows     )

Sadly, the way my health has deteriorated over the last few weeks, doing nothing is no longer an option for me, and after much soul searching and a few hard reality checks, I have decide that I need to ask for some help!   😦

So please help if you can, even if it’s just by sharing this post on your FB page or twitter account, and my wife and I will be eternally grateful to you, cos my grand realisation is that;

Desperate times call for desperate measures!

Thanks for taking the time to read this, and if you can donate, please go to the donate page via the donate button on the side bar or the “Contact/Donate” page tab above.

For those that would like to donate, but do not have a PayPal account please email me, and we can make other arrangements   🙂

I will post regular updates as to how we are tracking.

Cheers   🙂

Update:

Day 1 tally = $1495.00 + some to arrive next week by snail mail   🙂

Thank you all for your well wishes and support   🙂   You are amazing!   🙂

Udate:

Day 2 Tally = $50.00 + pledge

Running total = $1545.00

Update:

Day 3 Tally = $50.00

Running total = %1595.00

Update:

Day 4 = $50.00

Running total = $1645.00

Update:

Day 5 = $200.00

Running total = $1845.00

Update:

Day 6 = $80.00

Running total = $1925.00

Update:

Day 7 = $150.00

Running total = $2075.00

Day 9 = $412.00

Running total = $2487.00

Day 11 = $100.00

Running total = $2587.00

Day 12 = $20.00

Running total = $2607.00

Update:

$150.00

Running total = $2757.00

Update:

$50.00

Running total = $2807.00

Update:

+ $100.00

Running total = %2907.00