May 30, 2021 at 3:09 pm #30349
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.
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 )
June 2, 2021 at 1:38 pm #30379
@jenc thanks so much. I’m just doing a whole lot of research at the moment, and then have a whole list of questions that need to be answered. If I’ve got to go through this I’m putting my foot down in terms of care in the hospital. Here we get a dedicated nurse in ICU but once you go to the general ward there just aren’t enough nurses to go around, and I hate to say it most of their attitudes suck. When I was in last week for example I didn’t get a bell, so I asked the lady opposite me to ring the bell, it took almost 2 hours for someone to respond!! Then generally you’re attending to by a nurses aide who almost always has to clear things through the registered nurse and there’s normally one one, max two per ward. I love South Africa 🇿🇦 but just not at the moment.
June 2, 2021 at 4:22 pm #30382
@traceyaustralianmigration-co-za I honestly felt like I was having a mini panic attack reading your update! I don’t even know what to say! I’m so, so sorry you went through all that only to find out how dire your circumstances are. If only there was some way we could help you!
The pulmonologist sounds like a keeper though. I’m going to pray that you receive more care from people like her!
I’m sure you realize by now that we care a lot about you and are here to support you at any time. If you need help researching something let us know and we will made an effort to find some information. I’m happy to hear you are compiling your questions for the doctor(s). That is important to do!
Please check-in with us again when you feel up to it.
June 3, 2021 at 12:43 pm #30389
Hi @traceyaustralianmigration-co-za, I am sorry to read about the issues that you had in your recent hospital trip. It sounds like they need many more nurses. Here we do have a shortage, but it sounds like SA has a bigger issue with this.
I cringe when I read you did not have a bell, first off. But, 2 hours is unacceptable. I hope that you made notes. Do y’all have anything like a patient liaison there in the hospital? They work to solve issues from patients’ complaints and concerns.
Here, I am in close contact with the guy( liaison) at the hospital downtown in the med center. He has stepped in a few times and helped me. Of course, he too works for the hospital. If not, maybe a case manager would be helpful, like a social worker or unit manager.
Creating a list of questions and concerns is a great idea. Please do let us know how we can support you as you research and have questions. We are here for you.
July 9, 2021 at 2:41 pm #31072
July 13, 2021 at 2:18 pm #31101JeanParticipant
Traceys story is one of the worst hospital and treatment experiences I have heard in a very long time
Sending blessings and warm thoughts your way Tracey. Some people say that thoughts snd prayers are worthless but I know that they are actually powerful and will be praying for you as you make your necessary choices for moving forward.
July 14, 2021 at 3:08 pm #31110
Hi @colleensteele, thank you as always for your ongoing support and concern. I’ve just got home from 10 days in hospital (5 in ICU again) with sepsis. I’m not really sure how I ended up with sepsis but tbe general theory is that I had a gallstone that got infected and the infection was just overwhelming and got into my blood stream. I have to say I thought COVIDs big brother had come for me, and I’m really just trying to piece together what went on. I hate when I’ve been so sick that I have very little recollection of what actually went on. We’re deep in the grip of a third wave of the delta variant of the virus here in SA so I was once again alone and I’m sure @jenc will agree with me that it is so difficult to process these serious hospital stays when you don’t have enough information. I had a couple of great doctors looking after me, including the new pulmonologist, and they want to see me back in a month to try and move forward with some kind of plan. I also need to see the cardiothoracic surgeon at that time to discuss the options for heart surgery.
I have to be honest I’m getting more and more concerned that I’m really not going to be able to deal with an open heart surgery. Every time I get ill it is just a further set back and I just get weaker and weaker. I can’t even get to the bathroom now without a walker because I literally feel as if I’m going to collapse. I know I have to try and keep as active as I can but it is so difficult now and I’m really scared that I don’t have the strength or resistance to face another obstacle.
I’ve got a lot of questions that need to be answered before we can make any decisions on the surgery, and the pulmonologist obviously wants to wait for this 3rd wave to pass before doing anything. And she wants to make sure that all the doctors have had time to regenerate.
We’ve finally got access to the vaccine here and the department of health came to our village today to give us the first jabs. I was pretty excited to be doing something positive but when my sister went down to register for me and explain I can’t wait in a queue she was told that they wouldn’t be able to jab me because there is no access to medical facilities near to us and because I’m so high risk I need to be under medical supervision for at least 24 hours post vaccine. So the bright light on tne horizon has now become a challenge.
At least I’ve managed to lose 22 pounds in the last 6 weeks though. I’m working on tne next 22.
July 15, 2021 at 5:02 pm #31122
Oh no, @traceyaustralianmigration-co-za, I am so sorry to hear of the sepsis and horrible hospitalization. I can attest to those trips where we are not aware of all that happened, and putting it all together can often take so much out of us. I don’t think I will ever piece it all together. So please know that you are not alone.
Try and rest and recovery back at home. Your updates always leave me so worried about you, and I hope that things improve there for y’all. I hate that you now cannot get the vaccine that you were looking forward to. I am sending you lots of positive healing vibes and prayers.
You are one strong warrior, and we are always here to support you as you need. Please don’t hesitate to update us more often.
July 16, 2021 at 9:22 pm #31137
@traceyaustralianmigration-co-za I’m sorry for the late response. I had a minor procedure and have been out dealing with it.
I’m sitting here trying to figure out what to say but I’m at a loss. Just wish I could give you a big hug and offer my help when you need it. I assume the gall stone was removed? Sepsis is nothing to sneeze at. The fact that you are home again is an example of how strong you are. I know it might not feel like you are but it seems like whenever you really need to fight, you do.
I get what your doctor is saying about waiting for the 3rd Covid wave to pass, but I do wish they would take care of you sooner. As you mention, you feel like you are getting worse. I would hate to see them wait then tell you that you are not healthy enough to proceed. Would you feel comfortable pushing the issue with him a bit more?
It’s a shame they couldn’t vaccinate you while you were hospitalized. I would bring the vaccination up with your doctor too and ask if he can help you get it somehow.
This is why I started with…I don’t know what to say – because I feel like everything I just said isn’t helpful. Just know we all care and worry about you here. Please reach out to us at any time.
July 16, 2021 at 6:06 pm #31135CindyParticipant
OMG! That is HORRIABLE! I am a Nurse of 24 years and I have never!
The Best thing, that I would Highly Suggest, If Possible, Get to the US!
You can apply for Medical Reasons. People do it all the time.
I would not go back to that Hospitals and at least change Dr. and Hospitals.
If you need help with a lawyer, I can help with too.
You are in my Prayers.
July 19, 2021 at 1:22 pm #31140
Hi @traceyaustralianmigration-co-za, I wanted to follow up and check in on you. I only hope that you know that we cared and wished that we would help you.
Are you feeling any stronger this week? I am certain that hospitalization has taken a huge toll on you mentally, physically, and emotionally. Isn’t it strange how so many never understand what others are going through?
My heart is with you, and I am sending you many positive thoughts and vibes from Texas.
July 20, 2021 at 3:30 pm #31161
Hi @jenc, @colleensteele, @jean, @cindy2021 – thanks so much for the encouragement and support. It really does mean the world to me to know that I’m not in this alone and people do understand. I sometimes think that when I tell other people what’s happening they sort of internally roll their eyes and think oh drama queen, it can’t be that bad. Here I know I’m heard and understood.
I’m getting there in small steps, I’m just finding the weakness and especially the dizziness almost unbearable at times. I just will not move without the walker because when the dizziness kicks in I start shaking and really feel like my legs are going to give in. The doctor says it’s because tbe blood is literally rushing through the mitral valve almost unchecked. I need to go back in 3 weeks to meet with the cardiothoracic surgeon to see where we go from here.
@jenc, yes it sure is challenging on so many levels. I think what’s freaking me out is really having zero recollection of what went on in hospital. I’ve been in bad shape before but have always managed to at least remember the majority of things. This time I literally don’t remember anything until the day before I went home. I keep getting bills for things that I don’t remember having done so it’s difficult. I suppose we’re all experiencing this kind of thing having to be in hospital alone.
@cindy2021, yea I would pretty much give my right arm to be in a first world country but realistically it is just financially unachievable with our local currency being ridiculously out of whack with the rest of the world. It’s more than I could ever make in 2 lifetimes.
I’ve just had to cancel a holiday I had planned with my “adopted” kids. There’s a national park here in SA called the Kruger Park which is an animal wildlife reserve that is bigger in land size than the Netherlands and you basically stay in bush accommodation and spend your days on tne savannahs trying to spot game in the wild. Kruger is really my happy place and I’ve been going there since I was a tiny baby. It is so serene and peaceful and there’s something indescribable and special about being so close to such majestic animals in their natural environment. I figured this would be my bucket list trip (you never know) so I went all out to book 3 weeks accommodation, which is no small feat given huge local and international interest, but Doc said no too remote. I pray that I still get another chance to go. If y’all ever want an experience that is mindblowing Kruger should be on your list and I’ll welcome you with open arms.
Anyway it’s late on a very cold winters night (-6.2C) so time to climb into bed with the furrbabes.
Take care everyone and stay safe. Again thanks for the support 💜
July 26, 2021 at 10:53 am #31215
@traceyaustralianmigration-co-za I honestly teared up hearing about your planned vacation that you had to cancel. Kruger sounds like a place that can heal the soul. It does sound a bit too remote for you to risk right now but I am praying that someday you will get there with your fur babies.
Not remembering events that took place in the hospital does sound frightening. Is there any way to arrange for your sister to be consistently updated when you are in the hospital? Ask her to keep a log of all that they tell her so you can read it when you are well enough too? That would be better than finding out by the bills that come in.
July 23, 2021 at 11:18 am #31192
Hi @traceyaustralianmigration-co-za, I am grateful that you are making progress. Baby steps count and mean you will get there. I know this feeling all too well.
I hate that you have no recollection of certain events. It does frustrate you and is also scary as heck.
Please be careful with the shakiness and dizziness. Do you use anything when you are up walking, like a cane or anything? I know when I am dizzy and shaky, I tend to hold onto the walls and furniture as I head to the bathroom, etc.
So take it slow and take rest periods every few minutes when up moving around.
I’m sorry that you had to cancel your trip with the kiddos. That park sounds like so much fun. Canceling plans like this are often tough on our mental health. That also affects our physical symptoms. So, I hate to hear this. I pray that you can reschedule that trip with them once you are feeling some better.
I am sending you Texas-sized hugs and some of this heat to warm you and your fur babies. Would you please let us know what the doctor says when you go back in a few weeks?
July 25, 2021 at 12:55 pm #31211
- You must be logged in to reply to this topic.