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I”m having a tough time.
<div>@Jen @Colleen So I’ve been quiet for a while…I’ve been going through a lot. In March I started feeling really awful – dIzzy, oh my gosh so weak and heart palpitations like I’ve never experienced and the inability to stay awake for longer than an hour at a time. I was admitted to hospital at the end of the month and bloods revealed that my Hb was 7 (should be 15) and was later told this was a potentially fatal reading. Then the hunt was on to find the reason and the consequences – emergency scopes to check for bleeds, ultrasounds, MRIs, CT scans, echos and a million bloods. The result – severe iron deficiency, severely enlarged liver and spleen, worsening PH, and my replaced valve had totally tightened up. I got 3 x iron infusions and 2 x blood transfusions. I was then sent home with supplements to try and improve my Hb so a right heart catherisation could be done.aco
4 July was RHC day, and I was out like a light for the whole day. Next morning doc came and gave me the news; my valve that was replaced in October 2021 has completely failed and degraded 😪 and I am going to need another open heart surgery to replace the valve again. I always know there’d be a second surgery but was always told my first replacement should last 10 to 15 years. It’s less than 4 years and Im having surgery again! There is no explanation as to why this valve has failed so quickly.
There is only one surgeon in Johannesburg who can do this surgery and he was away for the whole of July and has a 2 month waiting list just for an initial consultation. I’m hoping my cardiologist can get me in to see him sooner because I’m finding it almost impossible to function.
I’ve been really rattled by this. For the first time I wish I lived back in Johannesburg. I’m scared all the time because my heart just randomly does flick flacks in my chest and I’m so far from medical attention. I wish I had more stable family support because to say that my current living arrangements are negative and toxic is an understatement.
But when things get too much, which they do a lot, i just hang onto my boys.
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8 Replies
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Oh Tracey, I am so sorry you are going through this and having such a tough time with very little support.
It is good that with all the testing you do have some answers and there is a plan. I just hope and pray that your Cardiologist can use his/ her influence to push your case to the front line as soon as the surgeon is back.
This has to be so stressful on top of everything else. Do you meditate, do breathing exercises to reduce stress? It can really help. Holding onto your boys 🐶🐕 helps. Do you have anyone near by that can help you? Please don’t hesitate to ask. You can also ask your doctor for a referral to some counseling.
Tracy I have read many if your posts and feel you are stronger than you think and you can reach out.
You are in my thoughts, prayers and I surround you with positive energy ✨️ 🙏 and ❤️.
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@Tracey I feel so emotional from your update that I don’t know what to say. I wish I could offer more than words of concern and support. I’m so glad you took a moment to reach out, and hopefully, knowing how much we care for you here provides at least some comfort to you!
My prayers are that you get into the doctor sooner and gets things moving for surgery, although I am so sorry you have to go that route again!
Are there any church or community groups you can reach out to who can at least check-in on you from time to time? My heart goes out to you my friend!
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Tracey,
I saw your post and hope it is okay to jump in with a reply. You are certainly dealing with a lot, and to need another valve replacement so soon is discouraging and daunting. But, you’re an experienced survivor and will persevere though this new obstacle. Do you know if the flip-flopping is due to the heart-valve issue, or is it due to rhythm issues of another sort? What does your most recent EKG reveal as far as rhythm issues. I can understand the difficulty in dealing with palpitations, as I am in constant atrial fibrillation, despite a pacemaker. Sometimes, when my Metoprolol isn’t in tip top therapeutic range, it feels like squirrels chasing each other in my chest, which also kicks up the anxiety a notch or two. Believe it or not, I play phone games to take my mind off my feelings and to focus on something else. I also listen to books through the Libby app, which can also take my mind off the heart beats and calm down with a good story. Libby interfaces with your local libraries and there are a plethora of audio books that you can check out for 21 days at a time. The best part . . . it’s all free!
I pray that you get in for the repair quickly and that you get relief from these bumps in the night (and day). It can take a toll, but you are stronger than you think, so do whatever makes you smile to make time go faster and you will be healing sooner than you think.
Lisa
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@LisaMichele Members are always welcome to join any topic/conversation, and I am so appreciative that you chimed in on this one! Thank you for connecting with @Tracey and sharing not only your personal experience, but also offering examples of what helps you through the struggle.
I am all for games on the phone! My favorite for over 10 years has been HayDay. My son, Cullen introduced me to it during one of his hospital stays. He no longer plays but I kept going because it is relaxing, and it doesn’t take a lot of concentration so I can still be aware and responsive to life around me. Royal Match is my other favortie. What games do you enjoy?
Tracey, how are you doing so far this week?
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Hi @LisaMichele , Your kind and encouraging words to Tracey truly touch my heart. Thank you for not only sharing how you keep yourself busy but also for showcasing your warm and loving nature.💜
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Hi, @Tracey , I’m so glad to see your name, my dear PHriend, but my heart aches after reading about your struggles. It feels incredibly unfair that you’re facing another open-heart surgery so soon after everything you’ve already endured post-surgery. On top of that, dealing with severe iron deficiency and complications with your liver and spleen is so much to bear.
Please know you are in my thoughts and prayers, PHriend. I’m so grateful you shared this with us, even though I wish I had more comforting words to offer. Sending you extra gentle hugs and so much love to SA.💜🤗🙏
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@Colleen @jen-cueva @carol-volckmann @LisaMichele Thank you ladies, I always feel so much better knowing I’ve got such amazing women behind me.<div>
The absolutely amazing news is that I met with an interventional cardiologist and he says he can do a trans-catheter valve replacement. I knew that technology is out there but didn’t realise that its available in South Africa. Crickey I am beyond relieved that I won’t be having another open heart surgery, it’s kinda weird to wrap my head around this happening any other way. Yesterday started full of nerves not knowing if I was going to be admitted for open heart surgery and ended with me coming home to Dullstroom with an entirely different plan. Back to Johannesburg for a replacement on 4 September.
The only hitch is that because this is a new surgery here, there is quite some negotiation with insurance providers and the doctors rooms have already warned me that I’m in for a chunk of change out of my pocket- eeek can’t do that so I’m going to have to be extra persuasive with my insurers. They’ve always been really good to me in the past so I hope that continues. Q
Interestingly this new doctor is the first doctor who has been prepared to commit to the fact.that my valve is being pummeled by Lupus and he has been totally honest that this is going to happen every 4 or 5 years. He’s very direct and has said they should never have used a tissue valve with the first replacement because now I’m committed to tissue for life. I was told 4 years ago it was not possible to use a mechanical valve but he says that’s nonsense. So it’s a bit annoying that actually this could all have been avoided.
@LisaMichele I absolutely love reading when my brain decides to cooperate, but there are just no community public libraries in SA anymore. Very sad state of affairs, and the only audio library is private and for visually impaired people.
Maybe I need to start getting into the gaming side of things – I hear there’s big money involved in competitions 🤣 Oh I’m supposed to be lowering my stress level – I wish 🤞
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WOW Tracey, 🌻 I think you hit the jack pot with this new surgeon!! It is so good to hear you are in such capable hands who is up to date with what is best.
I hope you have started to get your iron levels up and your stress levels down.
Looking forward to hearing your updates. Know you are in my prayers 🙏 and feel the positive energy ✨️ coming your way 😊.
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