01/03/2024
UPDATE
This will be a long one but also a final one for a while.
TLDR - After 76 days after walking into Wellington ED with slight shortness of breath, I finally get to go home on Monday 4th, March
So it has been a while since my last update, mainly because its been rather boring. They give us a weekly schedule that tells us when we have clinic (seeing the doc), echo's and blood tests (even though its always early morning Monday every damn week).
The other scheduled event is going to the gym, 5 days a week. Basically I am tortured by the physio every weekday. After the stroke episode, the following week they started the physical rehab programme. Basically the goal is to walk between two cones for 6 minutes and get over 500 (metres) walked.
Once you get over 500, you are deemed physical fit. I got 550 on the first Monday I was there which shouldnt happen. After then they pushed me hard, increasing all my excerises everyday. Treadmill (cant run or jog though), Exercycle, Leg weights, bicep curls, Leg press and walking up damn stairs along with more. They tried to make me do squats...I threatened to unplug my batteries if they made me do squats. I never did a single squat. Physically I am good.
So we have been just learning how to look after the machine that is attached to my heart, plugging the batteries in. Plugging myself into the wall. Ive put a picture of my wall plug that I plug into everyday on this post. Doing the dressing changes (Ailish has been doing them like a pro), learning to live with the machine (having a fannypack in the shower is an odd thing to get used to), getting dressed is a nightmare, always different ache's and pains, the LVAD rubs on my ribcage from the inside so sleeping is tough, I have to carry around spares for everything for the device (batteries, control unit) everywhere I go, Ive lost nearly 10kg so now I need to eat everything I can. They have just started me on protein powder shakes twice a day. It hasnt been the best way to spend summer.
Over the last few weeks they have been dosing me up with meds to improve my heart. The unique situation that I am in is that normally when you have one of these LVAD plugged into the heart its after a long period of drug therapy and treatment, normally years like the other two LVAD lads (Other Dave and Steve) that got a device the same time as me (they only installed 3 LVADs in all of 2023 and they have installed 3 at the same time which has never happened before in NZ)
As they don't have any indication on how drugs will react and how for 36 my heart compensated as well as it did (remember it was at 11% Ejection Fraction/Function which is very bad) and my heart is heavily scarred in areas that will never heal. Over the last few weeks, with all the drug changes, rehab and tests results they have decided to be undecided and not put me on the transplant list yet.
The sternum still needs to heal but they are going to closely monitor my heart to see how it reacts to the drug therapy as its an unknown. In NZ, you only get approved for an LVAD if its 100% the only option and you need a heart transplant (as the NZ public pay for it, thank for that btw).
In other countries like AUS, UK and USA they pop them in for people that cant get a transplant or need time to become eligable for a transplant. More common in the USA due to it being paid by the person or by insurance (The rise of Opioid abuse as resulted in more being plugged in as they wouldnt be eligible for transplant in the US). With me, because of how well I have done and so many unknowns, they are going to chuck everything at me that they can to improve my heart.
The want to take a shot on healing my heart, only once in the 20+ years that LVADs have been used in NZ has an LVAD in New Zealand been installed and then removed without the patient getting a heart transplant (and apparently shes doing well) but the problem is that they don't have a plan.
They are going to have to make it up as we go. There isnt a treatment plan, the previous person was in a completely different situation, the chance this will work is very low but we giving it a shot. I will need to fly up every 2-6 weeks until they work this out, no one outside of Auckland can do the tests they need to do. LVADs are very rare. We now in a wait and see situation.
However, that also means we can finally go home after 70+ days on Monday. We can finally get home, put down the xmas tree and work out how to make the house LVAD friendly. We have a list of things we need to do, getting a new sit-to-stand desk, a medical trolley for the dressing changes, figuring out if my wall plug cord is long enough to reach the toliet (otherwise I have to plug into the batteries, they make a very loud noise if not quick enough). Anyway, I was gonna write more but I will do another update once I'm home.
I have to untangle the cord now so I can go to the toliet.
