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Update From Tracey
This is the latest update that Tracey, @traceyaustralianmigration-co-za shared. I thought adding this to a new topic will better allow others to comment.
Tracey, again, I am sorry for the way that you have been treated and also kept in the dark perse about your health. You have dealt with so much just within this year. Please know that we are here for you and want to support you the best we can.
I hate that you were in tears, but I have been there and know it is not a good place.
Below is Tracey’s update.
Hi Everyone,
Just thought I’d give you an update on my situation. I saw a new pulmonologist a few weeks ago, one of very few who specializes in PH in South Africa. She asked me to go back into hospital on Monday so that she can do her own assessment.
It has all been a bit of a nightmare but at least I’m home now. Before I went into hospital I checked what the protocol in terms of having visitors is, and given that COVID has really been manageable the last few months I was told I could have one visitor for 2 hours a day. So I didn’t feel too terrible about it because at least this time I’d have a bit of company. So I arrived at hospital 1 on Monday only to find that visitors were no longer allowed with effect that day – so things didn’t get off to a good start. So we did a bunch of scans and bloods etc and I was told that I would be moved to hospital 2 for a RHC on Wednesday, because the Cath Lab at hospital 1 is broken and it’ll be 3 months before its repaired (that’s Africa for you!) but I’d be taken back to hospital 1 after the procedure. So early Wednesday morning I went to hospital 2, arrived there at 6.30am and was put on a stretcher in the Cath Lab. Well at 12.30pm I was lying on the same stretcher with nothing going on, at which point I was really uncomfortable and pretty cranky. Eventually the cardiologist showed his face at 1.45 and we finally got the show on the road. After the RHC I was told I needed a TEE and I begged the doctor to please make sure I was properly sedated because last time I woke up midway and it was awful. I was assured I’d be properly sedated. About 2 minutes into the procedure I was fully conscious and really thought that I was suffocating. I grabbed the nurse and then I just kept getting told to hang on it wouldn’t be much longer – why on earth they couldn’t get extra sedation on board is beyond me. To add insult to injury when they moved me off the table in the TEE lab they ripped the ekg leads off tearing my skin. So at that point I was outraged, sore and in tears.
And so I went back to lying on a stretcher waiting for someone to tell me what was going on. It was then pretty late in the afternoon when I was told that hospital 1 had to give my bed away and had no other beds, and there weren’t any beds available in hospital 2. At that point I hadn’t had anything to eat or drink for almost 24 hours and was told I couldn’t have anything for at least another 2 hours to be sure I wouldn’t choke following the TEE. And I still didn’t have any clue where the heck I was going to spend the night.
So I said that was it, I would be leaving and get an Uber to a hotel. Then the cardiologist appeared again and said they’d found a bed for me and I couldn’t leave because I needed to stay lying down. I was then transferred to a ward and of course all my stuff was still at hospital 1, including phone chargers etc. I did manage to get hold of a friend who fetched my things from hospital 1, and because I had then missed supper on the ward, got something for me to eat. But she was not allowed into hospital 2 to get anything to me, so had to leave everything for me at the main entrance in the hope I would get it. I did eventually get it and was so exhausted by then I ate and passed out.
Wednesday morning the cardiologist came to see me, and I was in tears again – and it takes a lot to make me cry, I am just not a cryer. I think in the last 10 years I’ve probably cried 3 times, when my mom died, when Meg died, and when my business partner stole money from the business (I’m not counting the times I cry when an animal dies in a movie ????). The cardiologist said he doesn’t understand why I hate being in hospital so much, to which I said if I was properly taken care of I probably wouldn’t hate it so much.
Anyway, he then went on to tell me that my heart is in pretty bad shape and the pressure in my heart and lungs is worse than its ever been. Apparently what happened is that when they did the valvuloplasty to relieve the stenosis, they ended up tearing the valve and the regurgitation is so bad its now threatening to also put me in left heart failure. Wow that was pretty mind blowing given that when the valvuloplasty was done I was told I wouldn’t survive a full valve replacement. So I’m not sure why they now think I’ll survive it, but I haven’t got any other options. Because I’ve had the valvuloplasty it means they can’t just repair the tear, the valve has to be replaced.
He said I could go home but I had to go past the pulmonologist first. She was really good at explaining everything to me and said I have to do this within 3 months or it’ll be too late. But she needs me to see a rheumatologist that she has chosen for her team, and I need to lose a lot of weight. Unlike all my other doctors though, she at least has told me that the medications I’m on for my autoimmune diseases are just designed in such a way that they do make you gain weight, and she’s given me some injections that I have to take every day that apparently will really help with getting the weight off.
I’ve got a lot of thinking and researching to do now before I decide what to do, even though my sister seems to think that she knows what’s best!
I’m off to eat some rice cakes ????.( that sounds great to me, LOL )
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