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.
June 23, 2020 at 12:47 pm #25885
July 1, 2020 at 2:08 pm #26062
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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.
September 22, 2020 at 11:44 am #27355
Hey @traceyaustralianmigration-co-za, it has been some time since you have posted. I wanted to see how things are going for you now. I know that after the loss of your fur baby, you were not doing well mentally. I hope that you are staying busy with the event that you were working on.
How are you doing? Please update us when you can.
September 22, 2020 at 7:19 pm #27370
September 23, 2020 at 4:29 am #27373
Hi @jenc and @colleensteele, thank you so much for the concern. I’ve been wanting to post for over a week now, but have been weighing up my words because I’ve been struggling to identify how I’m feeling.
Meg’s lose has been a massive blow for me. The most distressing part is that this stupid disease kept me away from her when she was in need, and it kept me from spending real time with her in the last 11 months. I wasn’t able to go with her to the vet, and its the first time that I’ve had to euthanize a fur baby without being there to hold them. My vet is amazing and the most caring person so I know he looked after her, but I wasn’t there for her because I didn’t have the physical strength to make a 2 hour round trip. She was the most amazing dog, and even though she was rescued from the most dire situation where she was being bred as a hunting dog, she was the most loving and affectionate soul. She was my guardian and made me feel safe, I know she would never have let someone harm me, and I guess you have to understand that in the South African context.
We don’t particularly live in the safest country and house robberies and assault are pretty much something that happens on a regular basis. As individuals we all have to make sure that we are optimising our safety in our homes and while I’ve got two Boston Terriers who think they are the biggest, most aggressive Dobermans known to man, they don’t really pose much of a deterrent. This is where I need to weigh words, because Meg was first and foremost my baby, and secondly a good guard dog and I’m feeling pressurised to get another big dog for security. I keep looking at other rescue dogs but just can’t bring myself to make a commitment because I feel like I let Meg down, and I don’t want to do that to another dog. I’m frustrated that my condition is stopping me from being able to fully engage in play and training, and it takes a lot of work to have good dogs. My sister seems to be under the impression that I can just rescue a dog and he/she will fit straight into the pack and we’ll all live happily ever after. It just doesn’t work that way and I don’t want to put a dog in a situation where I bring them into a new environment and then I keep having to leave to go to hospital, or worse that I don’t make it and I’ve got 3 dogs needing a new owner who will care for them the same way I do.
I guess this all feeds into my underlying feeling of uncertainty. I’m heading into 7 weeks without a hospitalisation which is the longest I’ve gone at home for the last 11 months. I monitor myself constantly and am just so scared of things getting out of control, I don’t think I can handle having to go to hospital again for a very long time. Having said this I have made an agreement with myself that I will live every day as happily and to the best of my ability as I can, and I have been having some really good days. But I’m constantly aware of how tenuous my situation is. I was in Johannesburg last week to see my cardiologist and pulmonologist and they are both happy that I seem to have stabilised for now, but no one is able to tell me where to from here, or how long I can expect this to last. I discussed the various medications that I see people on Facebook support groups using, and they are just not available in South Africa because there isn’t a high enough demand, and coupled with this the health insurance is unlikely to pay to specially import meds. So I feel like I’m not receiving the optimum treatment and that leaves me wondering if I now fall into the category of only having 3 – 5 years of life with untreated PH?
I’m a troubleshooter and a problem solver, it forms part of my job to be able to find solutions and answers for people but I can’t find the solutions for myself. If you have a problem, I’m a good person to talk to because I can logically see what your solutions are and give you a plan to solve the problem. Heck even my therapist asks me for advice sometimes (I love her to bits and we’ve have been seeing each other for 8 years). Yet I’m not able to get answers to my own questions, and the answers that I do have are simply not an option. But I’m not the kind of person who gives up easily so I’ll keep on trying to kick PH’s butt!!!!!!
@jenc, yes we did have our dance challenge, and it was so much fun! But I had to laugh, a friend who I haven’t seen for very long time saw the video of the dance and wanted to know why I wasn’t participating. I have explained to her before what my condition is, but gently reminded her that jumping around in the air and doing fancy dance moves is a little bit beyond me at the moment. Bending over to pick up dog bowls is a challenge, so I would have needed an emergency hospital helicopter on standby had I been doing the groove.
This morning is the first time that I have been on my own since I came home. I love the people in my community so much for making sure that I’m ok, but I have to be honest I’m so glad to have my home to myself for a couple of hours. I’m going to savour this morning, and I may even walk around naked for while 😁
Thanks again for the concern, it really does help to know that I can talk to people who really understand.
September 23, 2020 at 12:34 pm #27381
Hi @traceyaustralianmigration-co-za, I am happy that you updated us. But, my heart aches as I read this because I can feel the love that you had with Meg. You connected and felt secure with her there with you. I am so sorry that you are feeling so emotional.
Please offer yourself a bit of grace. You have been through so much these last few months. You are learning your body after your PH diagnosis. That in itself is challenging. It sounds like you are having guilt that you were unable to be with her. Don’t beat yourself up. I am sure that Meg felt the love from you from afar.
Often, we have to step back to figure out our thoughts. This sounds like what you are experimenting with. Overwhelming, at times, I am sure. PH is unpredictable and not being in control and coming to terms with this is a work in progress, even after 15 years.
I am happy that the dance challenge was something to occupy your mind. It sounds like it went well. It often hurts when friends have no clue about our situation. You are not alone, Tracey. Please know that myself and the forum members are here to support you.
I can certainly understand how you may struggle with getting a new fur baby. Training takes time and energy, and it sounds like you need to focus on your health first. My prayers are with you as you continue to grieve the loss of Meg. That is a big punch in the gut. I”m sorry for your loss.
Thinking of you and hoping that you are safe. It sounds like you have a supportive community. That helps so much!
I love that you are keeping your sense of humor :D.
September 23, 2020 at 4:17 pm #27385
@traceyaustralianmigration-co-za I can understand why you feel like you failed Meg. Give yourself time to grieve and while you do, reflect on the happy home that you gave her. It’s sad that you were separated during her decline but think about all the love and protection you provided her over the years. What happened is sad but not your fault. You didn’t let Meg down.
And the time that you were away wasn’t wasted. It sounds like you are physically in a better place now and I’m so happy to hear that! I hope you can keep breaking your record for time spent out of the hospital!
Thank you for updating us. It’s good to hear from you and like Jen, I appreciate how you have maintained your sense of humor!
We are here for you any time you need to vent and want support.
September 24, 2020 at 5:05 pm #27405Carol VolckmannParticipant
Hello Tracy, I just came across your story. My heart and soul are with you. You have been and still are struggling through so many health issues and on top of that the loss of your fur child, Meg. From your discription of Meg, who was so loyal, always there to protect you and be by your side – I think she still is and her beautiful soul is still giving you the strength to move forward, hanging in there and not loosing your wonderful sense of humor. You are an incrediable woman.
Has your Pulmonologist and/or Cardiologist suggested meds that are available in SA?
Keeping you in my thoughts and prayers and sending gentle hugs from WA.
October 24, 2020 at 7:36 am #27930
Ok update on my life. I’m now 2 months and 12 days out of hospital, and despite having had bronchitis for the last 2 weeks I’m doing ok. I was pretty convinced I had Covid but thankfully tbat test came back negative.
I’m struggling a lot still with fluid retention despite being on a massive dose of Lasix and Spiractin, and its a daily task to try and keep things under control. For the first time in my life I’ve been obsessed with the number on the scale and its amazing how badly my mood is affected when that number goes up. For the past few days I’ve been up and my mood is consumed with thoughts on how I can manage this and stay out of hospital. I’m trying to not have a lot of Sodium in my diet which is surprisingly easy in Dullstroom because we have no fast-food restaurants so I cook fresh veggies and chicken breasts most days. My doctors keep going on about my weight so I’m battling with that too, and despite my best efforts I’m not shifting any weight. I know that my chances of getting on the transplant list are diminished because I’m over weight, but honestly I don’t known what else to do. It all just becomes a bit much and depressing.
My last set of labs showed that my Pro-BNP has gone up since my last hospital stay. It was high when I came home but it has gone up so maybe thats why I’m having a problem with fluid. Carol I’m only on Tadalafil. There has been mention of IV medication and I think its Flolan, but the docs are not forthcoming with info and when I asked at my last doc visit about a month ago, I was told there are no meds available in South Africa.
On the very bright side though, I received a phone call a few weeks ago from a local animal shelter that I supported when I was healthy asking me if I could take a 12 week old puppy. It seemed to be karma at work because just a few nights before I’d been watching the movie The Art of Racing in the Rain and the dog in that movie was Enzo. The puppy at the shelter had been named Lorenzo. So the universe did her job and now little Enzo is firmly ensconced in our home. He is a very busy, vocal little boy with a huge personality.
I’m planning a memorial garden for all my little souls who have passed, and my mom (whose ashes have been sitting in my cupboard for 3 years- sorry Mom) with a huge space for Meg. I did have a laugh, one of the youngsters who helps me out with shopping etc told me that the first time she came into my house and saw all the urns (discretely stored on a shelf in the store room) she thought shame, this lady has lost so many people.
I guess that’s me for now. I sure wish I could take the dogs for a walk, but maybe one day again.
October 24, 2020 at 4:39 pm #27932Carol VolckmannParticipant
Hi Tracey, so glad to hear from you and have your update. Very happy to hear you are out of the hospital and delighted Enzo has come into your life. It is a gift for you both! You really have been and still are struggling so much. My heart aches for you. Please keep reaching out to your doctors, remember the squeaky wheel gets the grease! Here in the States if you need financial assistance for medications there are grants you can apply for. Is there anything like that in SA? You said you are really struggling with your weight, would your doctor recommend a dietitian you could consult with? In a previous update you gave you mentioned that you are a problem solver for others. Maybe try and have a conversation with yourself or a good friend and turn the table around and listen to that problem solving self. I am not saying you can fix everything but you may be able to come up with ways to spend your energy in a positive way and use that wonderful sense of humor you have. I am sending you positive energy and prayers your coming weeks will be better. Hug that little fur child. Warm hugs.
October 26, 2020 at 1:06 pm #27948
@traceyaustralianmigration-co-za trying to lose weight when struggling with fluid retention is extremely challenging. It upsets me when doctors don’t acknowledge that! When my son was battling rejection post-transplant he was placed on a very high dose of prednisone. He looked so heavy and his doctor was constantly after him about losing weight. Guess what? Once he tapered down on the prednisone, losing weight became much easier.
Same with weight gain from PH fluid retention. I know a girl who struggled to lose weight. When she received her transplant quickly went down 2 or 3 dress sizes. Most of her weight had been fluid.
I’m not saying you shouldn’t make a great effort to lose weight but try not to be too hard on yourself when the scale fluctuates. Your fluid retention I’m sure is fighting your effort.
My son was on IV Flolan for almost 6 years. He did very well on it. There is a lot to learn but it quickly become routine. If you do go on Flolan let me know if you have any questions.
Congratulations on the new puppy! Can’t wait to hear more about your new fur baby!
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