June 19, 2020 at 2:07 pm #25834Jen CKeymaster
Hi members, I received a message from @traceyaustralianmigration-co-za with an update. She needs our positive thoughts, prayers, and support. She went for her clinic visit and now in ICU. She is in South Africa and recently joined us. Let’s show her our support.
When I arrived in jhb yesterday for my appointments I was pretty sick and had oxygen sats at 76. I was immediately admitted to ICU in RHF. My pulmonologist tells me that this is going to be a prolonged admission because he needs to stabilise me and we need to finally come up with a way forward. Once I am stable, and I’m told this will take about 2 weeks, I’ll be transferred to a transplant center in jhb where I will have another right heart catheterization. This will be done by a cardiologist specializing in PH and a transplant specialist. My growing team will then assess whether or not a mitral valve repair is feasible and if so if that would then get me on the transplant list. There was also a lot of talk about getting me onto prostacyclin. I’m told that there is only 1 available in SA and my research tends to suggest Flolan the doctor wasn’t sure of the trade name. I’m told it’s only available IV so Im not sure how that is going to work in a tiny village that doesnt even have a general practitioner. Also need a blood transfusion because haemaglobin is very low. Probably contributing to my exhaustion. I’ll update if I get any news.. Cheers
@traceyaustralianmigration-co-za. you are in my thoughts and prayers. I am hopeful that they can stabilize you and get you some much-needed relief. We will be waiting for an update when you feel up to it.
June 19, 2020 at 6:54 pm #25839V.R. PetersonParticipant
Tracey, I’m glad you found our helpful forums but sad you need us. You’re in my thoughts and prayers.
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July 3, 2020 at 7:38 am #26109Marcia D JonesParticipant
Hello Tracy, I will add you to my prayer. I will hope and pray everything will go well, however, you must have faith in your higher power. Be blessed.
July 4, 2020 at 5:20 am #26117
Thanks for the positive thoughts and prayers. It has been so helpful knowing that there are people out there who understand what I’m going through.
I had a balloon inserted via angiogram on Wednesday to open up my mitral valve and thankfully that seems to have worked for my heart. Fortunately the Professor doing the procedure decided to anesthetize me because it turned out to take over 4 hours to complete the procedure.
It seems that it has worked great for my heart with the pressure coming down to just 5 (🤗) and the pressure in my lungs has come down to the low 60s. I must say that I’m a bit disappointed that my lung pressure didn’t drop down lower and I could tell that the Professor was a bit disappointed that practically I haven’t reacted as bouyantly as he would have expected. But I’m still recovering from the anesthetic and my blood pressure is now very low so I’m sure when I’ve had a chance to properly recover I’ll feel better.
I have been discharged because the hospital is so full of COVID they wanted to get me out of there. They wanted to send me to ICU after the procedure but all 11 ICUs had COVID patients in them.
It has been a very good move for me to move to a top class hospital because it means I have also now had access to top class medical professionals. I have seen a rheumatologist who is also a professor and he has said that I have been misdiagnosed with lupus for 14 years. I in fact have dermatomyositis which is earmarked by the deterioration of muscles and interstatial lung disease, and requires different medication to that which I have been treated with. I wonder if I had been treated correctly whether I would be in this position with my heart and lungs now?
The pulmonologist is the strangest man doing his rounds at 3am which is hardly conducive to normal discussion, but is a gifted doctor. He says my scans and lung function tests are so far from normal he needs time to work on a diagnosis so we will have a tele consult probably during the week. But the good news is I dont have sleep apnea – I’ve always been terrified I’d have to sleep with a CPAP so that was good news.
The best news of course is that I am home with my fur babies so I’m very happy!!
July 6, 2020 at 6:34 pm #26132
@traceyaustralianmigration-co-za I really needed to hear some good news today and you supplied it! I know things are far from perfect but at least there has been improvement and most important, you trust your new doctor’s. I feel so relieved for you! Yeah to be home with your fur babies! I’m sure they make you feel better than any medicine can!
July 12, 2020 at 6:58 am #26205
Sorry I’ve been a bit scarce, I’ve been having a really hard time recovering. I seem to just sleep all day. I’ve got a huge problem with retained fluid to the point that it is actually hindering my movement, and my blood pressure is extremely low. I’ve been trying to have a Zoom meeting with my pulmonologist but he has missed the last 2 scheduled appointments so I’m feeling a bit distressed because I still don’t have any feedback from him as to what he thinks the problem with my lungs is. I guess I’m just going to have to keep hanging in there.
July 13, 2020 at 2:17 pm #26234
Oh no @traceyaustralianmigration-co-za I am so sorry to hear about the fluid retention. That can be both scary and so uncomfortable. I feel aggravated for you that your doctor hasn’t properly responded to this concern. I assume you are on diuretics and when you finally hear from him maybe he will increase the dosages or place you on more that one kind?
Are you still alone? Is there anyone able to risk venturing out to visit with you?
Thank you for taking the time to update us. We think of you often and keep hoping for improved recovery.
July 13, 2020 at 2:48 pm #26236
Thank you @colleensteele, I am exceptionally frustrated- I left 4 messages today and still no word. As I said to my sister it’s all very fine and well having the best doctor in the country, but if he cant communicate with me his knowledge means nothing.i am on Lasix and told the cardiologist last week that the fluid is not shifting but he seems unconcerned. I’m particularly upset that I’ve been taken off my PH meds but haven’t been given any other treatment. I have no official diagnosis from the pulmonologist so dont even know what I’m dealing with. But I’m still experiencing the same severity of symptoms and dont feel that ive gained any relief from the heart procedure.
I’m not able to be alone at all so the community has really jumped in to help, but everyone has to follow safety protocols when coming in the house. I do feel exposed but I really need the help. I keep thinking about @jenc’s article about the three hardest words. I’m terrible at asking for help so having someone here 24/7 has been really difficult.
A friend suggested that she drive me back to johannesburg to confront the doctor but honestly, I dont think I would survive the trip at this stage.
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