(Well, who doesn't do a hospital loo selfie? It's a looooong day.)
Well here I am back at the Day Procedures Unit (DPU) for my next hit of juice (IV Saline). I'm a wee bit tired and washed out today so looking forward to that precious litre of fluids. I think I've been trying to make the most of any benefit from the IV and pushed a little too far. But you get that. At least no one can accuse me of not being motivated.
As promised my update as to how it's all going. The big question being “is it worth it?” Worth it for the hassle of finding a doctor who'll prescribe the procedure.? Worth the hassle of finding a place willing to do it? Worth the four-plus, hours it takes to be infused? Worth that long day spent in the hospital? Worth being exposed to the Petrie dish that is the hospital, when your immune system is not exactly in great shape? Worth being jabbed with a needle weekly as I'm not a candidate for PICC or port?
So far, for me, the answer is yes.
I wont say it's not an exhausting day. And there is the pre-prep the day before and the morning of. Tuesday is spent making sure I try and rest up and am anal about my diet so to manage my gastric issues as best as possible for the next day. Wednesday is all about trying to get myself together in the morning, when morning is always my worst time of the day. Organising transport to and from the hospital; taxis are hit and miss where I live in the boonies outside Melbourne. Though this week the taxi driver was not only on time, but also opened the door for me, helped me with my bags, and was an all round friendly guy. Which is always nice. Though nearly $13 for a 5min trip still makes me gasp. These are all factors to be considered as they take a substantial amount of energy. I usually leave home around 10:30 and get home around 5pm. So it all makes for a really long day.
(Me and all my friends in the waiting room.)
(Either it's a quiet day in the DPU, or my BO's gotten really bad.)
(Today's infusion ensemble includes violet compression stockings and new boots.)
Today I encountered what will no doubt be an ongoing issue. The fun game of find-the-vein. After searching around I am back with old faithful in the crook of my right arm. It seems all the others have fled. Sadly, old faithful is getting a bit sore as he's also the one that tends to be used for my monthly bloods. But the lovely nurse managed to get that little sucker in there and I am juiced up once more.
(Old faithful was a tad sore by the end.)
My bp has been swinging a bit the last two infusions, although the width of the swing is far smaller than normal. First time there was little swing and a pleasant 120/69 hr 65 for most of the infusion. Now I am doing the old 115/79 hr 69 to 97/56 hr 65 to 138/90, hr 68. Much smaller swings than I am used to where it can normally be anything from 70/50 to 165/115 minute to minute. I'm pretty stoked with my pulse pressures which mean that even at 97/56 I still feel pretty great. Though the staff keep asking if I am dizzy. It's strange to see them get worried as it's so much a normal part of life. But it does mean I get to raise a bit more awareness as I explain the joys of Dysautonomia. My hr has remained decent so I'm pretty happy and I've had minimal bradycardia during the intervening days between infusions.
I've been doing physio and OT the two days immediately post infusion to capitalise on any feelings of wellness I have thanks to a more stable bp and hr. Last week was a bit of a shamozzel as in my brain fog I booked OT and physio on the same day, with OT at 9am. Sometimes my own stupidity amazes me. Needless to say the OT and physio took pity on my patheticness. Plans to watch me cook and garden were shelved for the day in favour of sitting down upper limb exercises to hopefully improve my arms of patheticness and discussions on pacing, appropriate mobility aides and of course the look of “what the?” when I mentioned I didn't have a disabled parking permit. I have to see my GP at the one month mark for review so I'll add that to my list of things to discuss. It would definitely make Mr Grumpy happy if I did get one as I'm always getting lectures on my stubbornness about the issue. Tomorrow at the reasonable hour of 1:30pm I will be making hotcross buns under the watchful eye of my lovely OT whilst she points out all the ways I make it hard on myself thanks to stubbornness.
Physio was the eye opener. Deep down you know how much you've declined but you delude yourself that you're not really that bad. Then after assessment you are handed a program which only allows for 2x30sec bursts on the minicycle, with no resistance, and you realise just how bad your physical abilities have become. And the reality is, as much as I want to believe otherwise, she is completely right. By the time I do her program twice a day and the OT upper limb program 3 times a day I am beyond exhausted. I am rocking a program that overall is less than what we used to give my elderly patients back when I was working in rehab. Once more I am confronted with the knowledge that Frank and Beryl my old grey-haired nemeses from my original physio class could still kick my arse, hip replacement and triple-bypass be damned.
And my body is protesting my attempts at improvement at every opportunity. The bone pain and zapping in my left leg have gone up about 80%. I am in pretty constant pain now, even my right wrist feels like it has been broken. All from exercises a new born kitten could do with ease. That's a little confronting when you're not quite 40. Once more it's the good old rock and a hard place. So when I see my OT and PT over the next two days I guess we'll be reviewing things again. At this rate breathing and forcing a fart will be about the only exercise I am capable of.
I am still feeling better overall since I started the regular infusions. The last two days before the next infusion are still rough though. My kids and Mr Grumpy just look at me and shake their heads as stroke face hits and my body goes into cascade failure once more. But those first couple of days post IV are quite golden compared to my norm. As my kids told me last week I actually have colour in my face and more importantly I am less grumpy and can take the piss better. I've also managed to do a couple of things around the house that I've been putting off due to my health. My reading corner is finally done and I am quite stoked. Once more that may not be quite the variables my doctors are interested in, but from a quality of life perspective it's pretty good.
I did note this morning as I sat in the chair waiting for my infusion that stroke face was beginning once more as my left eye and left side of my mouth began to droop. Now over half way through my bag of juice it's beginning to lift and go back to normal. Surely that means something. I do wonder about the connection between my neurological and blood volume issues, especially the difference I feel in the facial paraesthesia after the infusion. It seems hypoperfusion is a bit more of a pesky problem than I have previously realised.
(Pre (L) and post (R) IV saline. Pre: stroke-face beginning, I always notice my left eye more but my mouth was also starting to drop, was feeling a tad worse for wear. Post: stroke face mostly gone though still looking pretty tired. At least I can open my eyes fully.)
Once more I'll have to say the whole process is made much easier by great and friendly staff at both the Day Surgery Unit and the Community Rehab Program. It makes such a difference when the staff are nice. Having been to other hospitals where I was confronted with nursing staff who were more akin to Nurse Ratched from One Flew Over the Cuckoo's Nest, I really appreciate the staff at my local hospital. As most patients quickly discover bedside manner can make or break an experience, especially when you are really unwell or distressed. There are a few hospitals around town who could take a leaf out of my local DSU and CRPs book.
So there you go, that's how it's all going. Pretty tired right about now. Once I've finished writing this I think I might take a little nanna nap in my recliner whilst the last 200mls drips into my arm.
A little bit of my relax mix that gets me through the 4hrs. One of my favourites from PJ Harvey and Tom Yorke, This mess we're in.