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Welcome Tracey
Hi, y’all,
I wanted to share some about Tracey, she is a new member, diagnosed only 6 months ago. @traceyaustralianmigration-co-za lives in a small community in South Africa. She has heart issues as well as lupus along with her PH. She shared a bit here.Thanks for the welcome. It has been a very challenging time for me. My doctors put me into lockdown as soon as the news of COVID-19 came out of China so I have been isolated for quite some time now.
I live in a very small village in the province of Mpumalanga in South Africa which is very rural, but being in such a small community has had its advantages. I have some wonderful friends who do my shopping for me and drop it at the front door, and then go and stand at my garden gate which is at least 10 meters from my door, so that we can have a chat. Sometimes friends pull up their garden chairs in the road outside while I sit on my patio so I have some company – totally breaking lockdown rules, but we all love each other here.
In terms of my illness, I have had to be hospitalized once during the pandemic which was pretty scary but I was kept in total isolation in the hospital. I have however deteriorated to the point that I need a caregiver and that is not possible for me at the moment. I cannot afford a live-in carer and cannot risk a carer coming in from outside every day.
Life has it’s challenging but we just keep on going.
later she adds- Emotionally I’m struggling a bit, to be honest. This last hospitalization showed that things are going in the wrong direction with the echocardiogram showing an increase in my pressures despite being on Revatio and Volibris, and a tightening of the mitral valve. I need to have another angiogram to confirm the pressures. The plan has been to try and stabilise the PAH to a point where I am able to safely have surgery to repair my heart, and hopefully, that would relieve the PAH. I was told now by my doctors that any heart surgery is off the table now and all we can do is try to medically manage things. It does really scare me that I have deteriorated to this extent since October when I was diagnosed, and am really unsure now as to my life expectancy. Everything I’ve read seems to indicate maybe a year or two? I see both cardiologists and pulmonologists on the 30th so I’ll ask them both.
Please welcome her and our other new members.
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