Long time no blog!
I stopped blogging before a disastrous hospital stay and never got around to starting again but thought it was about time I did an update on how I'm getting on with IV saline as the blog gets lots of hits about it and people have been asking.
This June will be 2 years since I started on it and life is so different! I've been making slow and steady improvement. The average day is still spent in bed except bathroom trips in my wheelchair but I can push myself and go out (but crash after). People who knew me before and after just can't get over how different I am.
Before saline I was either asleep or wanting to be asleep all the time, even when I was awake I so rarely felt anything other than extremely groggy. I spent all my time laying in bed with my legs raised and despite this my heart rate never dipped below 120 (6 slow sodium tablets and twice daily fludrocoritsone had lowered it to 120) but as soon as I sat up it would spike and my blood pressure would drop. Standing for more than a matter of seconds would cause me to collapse. Crawl or sitting up also left me breathless with a racing heart. Apart from hospital stays I left the house once s year and it would take 2 months to recover from it. I was drinking over 6L every 24 hours but always thirsty and feeling dehydrated.
I mentioned in my first entry that when I had my line inserted I had 1.5L of fluid in a short space of time and didn't ask for my wheelchair to be reclined but from starting it there has been a slow upwards curve. Sadly the benefits don't last and after 20 hours I'm ready for my next bag, I had hoped to be off fluids by now but I can't see that happening any time soon. Since starting I feel much more awake, I described it as I feel like I've come back to life during the good parts of the day. I feel less poisoned, less dehydrated, my BP is better, concentration, heart rate (although still tachy) lower etc etc.
So I used to have one day out of bed a year, since the summer I've been to hotels, eaten in quiet restaurants, seen a snow, and went into Starbucks for the first time! A friend who has no previous medical experience learnt how to look after me and do my medication and has taken me away without my parents for the first time in my life (I'm 32!).
Saline certainly isn't a cure, my drug list is still over 20 items, and in the past week I've spent half an hour out bed laying on the sofa. I still have times when turning over in bed is a struggle or having a conversation is too much but now days it's because I've over done it rather than random bad days. I know all it takes it's one infection or just one relapse but life is still a million times better.
I still have no line support despite my consultant requesting it which is one of the hardest things and have to buy what supplies I can online and beg, borrow and steal supplies from online friends which is a major downside and of course the other downside is the constant risk of infection.
I use an IV pole at home but have had IV saline in the car, hotels using an ironing board and big lamp on a table and even in a crowd with my friend holding it. It's given me a quality of life I could only dream of and in the past 8 months I've managed more than I have in 15 years combined- complete with feeling the sea lap my feet!
Why does it work? Again no exact answer but my Drs theory of the fast increase in blood volume (it doesn't work when infused very slowly) putting the stretch on the Baroreceotors. I can't say I had heard of Baroreceotors or their role in the body but after watching this video it made total sense
My previous blog about it has more about the treatment and how I accessed it can be read here.
In short it's the first thing in 15 years that has helped and let me see the world outside my window!