June 2, 2020 at 3:21 pm #25501
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.
June 2, 2020 at 6:09 pm #25502Colleen SteeleKeymaster
Welcome, Tracey! I’m sorry to hear your struggle with decline. Has your doctors discussed IV therapy for you at all, maybe Flolan or Remodulin? Sometimes Revatio isn’t enough and triple therapy is required. That was the case for my son. He was on Ravatio, Bosentan, Flolan and diuretics. It’s worth the discussion with your doctors if you haven’t already.
It’s sounds like you have wonderful friends in your village who care a great deal about you. Please keep us updated on how you are doing. I hope all goes well on the 30th and that you get some answers that provides hope.
June 4, 2020 at 5:36 pm #25544DawnParticipant
Welcome, Tracey! I’m sorry to hear of your current difficulties. When I started medication for my pah my doctor told me it usually takes 3-4 months to see results. It took closer to 8 months, and I was feeling like I didn’t have much time left when it finally started improving how I was feeling. My doctor also told me not to focus on any particular life expectancy because we don’t know what will happen when and they are making strides in treatment of pah. I try not to focus on the ‘what ifs’, but have tried to have my important paperwork etc. in order for whenever that time may come. I hope your meeting with your doctors brings good news. It sounds like you have wonderful friends! You’ll find some wonderful folks here too.
June 4, 2020 at 5:57 pm #25549
Thank you @dawnt for such encouraging words to @traceyaustralianmigration-co-za. It certainly does help to focus on the positives. I am a 15 year long-term PH patient. I have certainly had some ups and downs, but I am fortunate to be here. I also have that important paperwork like advance directives, etc., because none of us ever know what tomorrow may bring.
I am grateful for the continuous research and strides made in PH treatments.
Thanks again, Dawn for such kindness. How are you doing this week?
June 6, 2020 at 11:09 am #25578TraceyParticipant
Hi Everyone from a very chilly little village in SA
@dawnt thanks for the response. I guess I just have to get my head around the PH. It’s funny I’ve lived with Lupus for so long and it never scared me or felt like it was threatening. This just seems different to me. I think its because the diagnosis was around such traumatic circumstances and I’ve been unable to work since October, something.that has not happened to me in my 30 year career. I’ve just not bounced back from diagnosis which is unlike me but I have to get used to a new normal
@colleensteeleele the doctor has briefly mentioned some IV medication but he seemed to indicate that we would need to apply for a special licence to import and use the meds, but I’ll certainly discuss with him and the cardio.
Thanks again I find it very comforting knowing that I’m not alone. I’m a great writer and always have been so you may all regret me joining the forum 🤣
June 8, 2020 at 2:59 pm #25589
I am hopeful that you will bounce back some once they find the best treatment plan for you. That often takes a little time. I am sure that lupus and PH are so different in how they affect you. I bet the 2 of them make things that more challenging.
You mention that you had to stop working. May I ask what your career was?
When do you see your medical team again? Please know that we are here to support one another. Thank you for sharing your PH journey with us. You never know when it may help others who are reading.
- You must be logged in to reply to this topic.