• sally-hoffman

    October 14, 2021 at 7:18 pm

    Hi Tracey,  So glad to hear you are ok.  You’ve been on my mind every day.  Such a dual time for you, crazy glad the surgery is over.  Long hard road ahead to recovery.  We are here for you every day.  Smile brave girl.  You did it.  You will do the rest.  Best, Sally

  • jen-cueva

    October 18, 2021 at 8:22 am

    Hi @traceyaustralianmigration-co-za, I wanted to let you know that I am thinking of you. I will be on the road in the next few days, but I will keep an eye out for any updates.

    I hope and pray that you are recovering as I type this message. I am keeping you in my continuous thoughts and prayers.

    @mainegal, your words of encouragement to Tracey made me smile. That is so kind, and I know that she, too, will appreciate those words.

    How are you doing this new week?

  • jimi-mcintosh

    October 20, 2021 at 7:26 pm

    So happy that your surgery was a success and you are recovering.  Force yourself to stay active and push yourself just a little more each day. Positive thoughts, positive actions, yields positive results.  I almost gave up, now I am fighting my way back again.  We have your back and are pulling and praying for you.

  • jen-cueva

    October 24, 2021 at 11:10 pm

    Hi @traceyaustralianmigration-co-za, I was on the road last week, and you were on my mind many times. I wanted o check in and see if you had updated me while I was out a few days. I am sending you extra gentle hugs, lots of love, and positive thoughts and prayers your way from sunny6 San Diego.

    @jimi, your words to Tracey are heartwarming; I teared up. It makes my heart happy that you are PHighting your way back. We are cheering you both on, my PHriend.

  • jimi-mcintosh

    October 26, 2021 at 11:43 am

    Tracy wishing you the very best today, tomorrow will even be better. When we are all singing the same song and pulling together, We become the Choir. We are praying and singing for your speedy recovery.
    Remember that Doctors practice medicine , your GOD , does healing.

  • Colleen Steele

    October 26, 2021 at 1:30 pm

    @jimi and @traceyaustralianmigration-co-za you are both often on my mind. I hope you don’t mind me using a description that is often used within the PH community…you are both PHighters! You have had your share of struggles. Sometimes they knock you down but in your own time you always get back up.

    Thank you for the support you give to others and thank you for letting us support you too!

  • Colleen Steele

    October 29, 2021 at 2:08 pm

    @traceyaustralianmigration-co-za I hope you don’t mind that I let our PHamily know that I heard from you. The update will make them happy!

    Tracey is out of the hospital and at rehab now. Her sense of humor is still intact and we all know that laughter is the best medicine!

    Please continue to keep her in your thoughts and prayers.

  • jen-cueva

    November 4, 2021 at 2:59 pm

    Thanks, @colleensteele, for that uplifting update. @traceyaustralianmigration-co-za, I am so happy to hear this update. Colleen messaged me last week as I have been asking about you.

    I love that you have your sense of humor back. I am keeping you in my thoughts and prayers as you continue to recover. How are things going for you this week?

  • tracey

    November 17, 2021 at 11:15 pm

    Hi all, yes after 1 day shirt of 7 weeks away from home I was allowed to escape the confines of hospital on Saturday. It has been somewhat of a Rollercoaster bit more about that later.

    The surgery went very well with no complications except for a last minute repair to the tricuspid valve as well. I was in theater for 7 hours and then in ICU for another 7 days before I was spent to tbe ward for another 8 days before going to a sub-acute facility (rehab). We worked really hard in subacute with daily Occupational Therapy and Physiotherapy and getting back I tk daily life but after 10 days they picked up that I was in a-fib and needed a cardio version. So I was back to the hospital for that shocking experience (and I was zhocking) and stayed there for 3 days before going back to sub-acute for 3 weeks.

    The staff at the sub-acute were.amazimg but it was desperately lacking on the culinary side if things. I love my food and had shallowed my taste before foe bad hospital food. This was beyond and I think I single handedly set Uber Eats back on the map after lockdown.

    It was during this time that I realized that things were going pear.shaped with my sister. She was becoming increasingly agitated ald nasty with me so I tried really hard to not need her to do anything, but there were things I needed and this was done very grudgingly. I hadn’t even gone to sub-acute yet when she told me she needs to start spending more time with her “husband” so ww’ll have to start seeing how much help I’ll need.

    She also started becoming really want saying things like I don’t have tbe will power to keep up with tbe physio program I was given without supervision and she didn’t trust me to look after my own health- after all she hadn’t been down this road just for me to give up. She even compared me to someone on the reality show my 600 pound life. Ou trip ho was was just insane with her screaming th we se wild accusations at me and going crazy when I tried to defend myself. I felt somewhat like I was having a mental breakdown because obviously I was remembering things wrong. On our second night home.she went to the point of trying to physically attack me, unprovoked, and her husband held her off. They night @colleensteel and @jenc I answered your FB messages. I answered Colleen first in a DM, and then without thinking answered Jen on a public platform.  Thr next morning my sister said we need to go to family counseling, I said that’s fine but not until she’s got her head in straight which of course was also the wrong thing to do, and she started ranting at me telling me that the staff at the rehab all hated me and had numerous combines about me which I found a bit odd. Anyway she went out the obviously mother in law saw the FB post to Jen and let rip via whatsapp calling me Ann ungrateful bitch and no worthy of anything from anyone, and two faced and on and on. Then she threatened to smear across FBL. Oh and I’m the worst Bully she’s ever come across. NI was a little upset to say tbe least but as soon as my sister got home I phoned the rehab in front of her to ask about complaints against me. So ny sister then admitted that she has made it up to try and make me see how wrong I am. I spent the rest of the day inconsolable and confused and like a guest in my own home.

    Anyway bit packed myself off to bed soert of wondering what this life is all about. The next morning my sister told.me that what she has done is so bad and she just feels terrible for making me feel this way.  That’s great the only person that helped was her but let her keep believing things are OK because plans are afoot to get.her out.

    There’s so much personal drama that I’ve hardly touched on the surgery. @jenc as I said I do feel a bit disappointed particularly today and yesterday. The first echo I had post surgery showed pressures of 45, which is a huge improvement but not insignificant. So I’m not happy about that. Then tbe day before yesterday I noticed I was getting very SOB doing my physio, so phoned tbenkhysio who said trybtinenit back – and she laughed and said at least she knows I’m doing it. But yesterday my days on exercise were 75 and just walking from the fridge to the table last night dropped to 79. I emailed my pulmonologist whosaid this should be conserved s big step back and if not better today I would have to see the cardio which I know means hospital.

    I’ll just wake up properly and see how things go.


  • jen-cueva

    November 18, 2021 at 5:51 pm

    Hi @traceyaustralianmigration-co-za, I am happy to hear that you are home but not about the sister drama. Ughh, that is not what you needed after all you have been through.

    I am sorry that she saw your response to me on FB and went crazy on that. I hope that things are much better with that, at least until you can get her out of there. It sounds like a toxic relationship, unfortunately. Again, so sorry that this is happening to you.

    WTG on your Echo this early on. But I am interested to see how your SOB is today and what your pulmonary team says. That and your oxygen desaturations would concern me, too. Please try to limit stress as much as possible. I hope and pray that this is not another hospital stay for you. I know you want to be home with your fur babies as you continue to recover. Take it easy and slow; you have been through so much, my PHriend.

    Please keep us posted. We are here to support you.

  • Colleen Steele

    November 19, 2021 at 7:06 pm

    @traceyaustralianmigration-co-za I’m so concerned about how your sister and others are treating you. Emotional well being is such an important part of recovery and it sounds like you are being deprived of that. Whatever you can’t get from them on that level please know we are here to provide it. We want you to feel well, inside and out.

    It sounds like sometimes your sister truly wants to help and other times she is at odds with doing so. Makes me wonder how much other people are influencing her relationship with you.

    Praying things all around get better for you.

  • tracey

    December 1, 2021 at 4:36 pm

    Hi all, the day after my last post I was sent back into hospital with organising pneumonia quite severely through the top, middle and lower left lobes. Just been home 3 days. The cardio did an echo and my pressure was up to 56 and I heard the cardio telling the pulmonologist he doesn’t think they’ve brought the ph under control. Wish he’d discuss that to my face so I know what’s happening. Because now I am really disturbed that the dizziness has returned with avengeance and I’m back to clinging to walkers and walls to avoid falling down. It is freaking me out and I know I have to discuss this with my doctors but they’ll make me go back and i just can’t. I am emotionally spent and exhausted and spend a lot of time crying. I’m pushing to keep up with my physio routine, but it’s not working and just makes me feel worse when I can’t do it. I have a huge level of disappointment and despondency at the results of this surgery and just feel I’ve got the same problems as before.

    It’s really late and I’m emotional and probably not making any sense, so I’m going to sign off.

  • jen-cueva

    December 2, 2021 at 3:30 pm

    Oh no, @traceyaustralianmigration-co-za, I’m so sorry to hear about pneumonia and hospitalization. I knew that you were having some difficulties with your last post. I had a note to check on you today, so I appreciate your update.

    I hate to hear that the surgery isn’t effective, or maybe it needs more time? Like you, I wish the cardio would have been upfront with you and discussed his concerns. When do you see your medical team again?

    The dizziness is concerning, and I am worried about you. How’s your blood pressure? Did they do your labs, too? When we get up and put already low, BP may drop, which can cause dizziness. When my sodium is low, I am like you describe. I hold onto walls, chairs, whatever I can to help me from falling.

    How are your lungs and breathing after this severe case of pneumonia? That can also cause an increase in your pressures. They may want to do another Echo once it is resolved.

    Is your sister still with you? I know that you are happy to be becak home. I hope and pray that things will start to improve with rest and time for you, my PHriend.

    Please keep us posted when you feel up to it.

  • lesa-worsham

    December 2, 2021 at 6:51 pm

    Hugs for you Tracy.  What you went through is an ordeal. It will take time to heal. Be patient. I had the same operation four years ago and was in the hospital four weeks and on dialysis three months. It took about a year for full recovery. Keep on truckin and I’ll keep on praying for you.

    • jen-cueva

      December 3, 2021 at 12:40 pm

      Hi @lsworsham, thank you for sharing your experience with this same procedure with Tracey. I know that she will find some comfort and hope from your support.

      How are you doing now, four years post-surgery? Did you experience an increase in dizziness post-procedure, as she describes?

      @traceyaustralianmigration-co-za, never forget how strong you are, and you continue to show us that. You are loved, and we pray for you from many different areas to SA. Please update us when you can. You got this!

  • tracey

    December 3, 2021 at 2:58 pm

    Thank you Lesa for sharing with me. I sometimes feel so alone in this because I live in a tiny village and while everyone has been very concerned and understand that I’ve had open heart surgery, I can see their eyes glazing over when I try to explain the heart issue, or the PH to them. I almost get the feeling that people are thinking ok get better already, and it’s just not that easy. Here in South Africa I have to even explain to the majority of nurses who have cared for me outside of ICU what a mitral valve replacement is, and that your sternum is actually cracked open to get access to your heart, and that your heart is stopped during surgery. It just gets super frustrating. A big but though is that I have a wonderful therapist whose mother had a valve replacement a few years ago and she has just been wonderful. We have talked almost every day for the last 2 months – she has been my therapist forever and has seen me through so many health challenges, but is concerned about how emotional I have become. I think she understands me better than my doctors do ???? .


    @jenc thanks for the tips on what could be going on. I have been putting off talking to my cardiologist because I’ve been so scared that he’s going to tell me I have to travel back to Johannesburg to try and see what’s happening, but I did call him this morning and asked him if I can go to a relatively close lab to check my blood work. He was very understanding and said it could be a number of things, but foremost in his mind would be that it’s PH related or actually something to do with the lupus. Anyway we agreed that I will monitor my BP and sats, especially when I’m moving around, have the blood work done and then work from there. I think I got so panicked that something had gone wrong with the surgery that I just have not been able to see the wood for the trees. I’ve managed to find a caregiver who is with me at tbe moment, it’s a hit to the wallet but necessary.


    Thank you for your unwaivering support and love. I am so grateful that I found this forum and the amazing people here.


    • Colleen Steele

      December 8, 2021 at 3:50 pm

      @traceyaustralianmigration-co-za I’m sorry for not responding sooner. I’ve been in the other side of the country visiting my parents.

      I just wish I could reach through my computer screen and give you a hug. It hurts to know you are hurting, physically and emotionally. As you mentioned yourself, your sternum was cracked open and your heart was stopped. My mom broke her sternum in August and it took months for her to heal and not hurt.

      Yes, PH and Lupus is likely to be the reason for your concerning symptoms but they might be flared because of the pain you are likely still feeling from the surgery. Is it possible for you to have physical therapy to help your chest heal? I’m just hoping that once that feels better maybe your other symptoms will calm down and you will start to feel the rewards of having the surgery.

      Just know you are not alone. We are here for you. Please reach out at any time!

  • jen-cueva

    December 6, 2021 at 4:36 pm

    Hi @traceyaustralianmigration-co-za, I’m grateful that you did reach out to your cardio. Yes, PH and lupus would most likely be the most common cause, but if they aren’t seeing anything there, I mentioned the sodium and drop-in regular (systemic) blood pressure.

    I’m happy that you have some help, although I know that doesn’t come cheap. But, it’s your health. You’re worth it.

    After such a complicated surgery, I can only imagine how stressful this has been for you. Keep your eye on the prize and know that many of us think of you and send you positive thoughts and prayers.

    Please do let us know once you hear back from your labs.

  • jen-cueva

    August 23, 2023 at 6:29 am

    Wow, @traceyaustralianmigration-co-za, this doesn’t seem like two years ago this week. You’ve come so far, my dear PHriend. You’ll come through this hurdle again to begin your infusions to boost your immune system. One step at a time, even if it’s those baby steps, will do it!

    Tracey messaged me about a new hurdle she is experiencing and would like others’ experiences with PH and kidney issues. She writes, “Hi Jen, I’m sorry that I only ever seem to be in touch when I’m having a crisis, but time seems to run away with me. I finally managed to get my doctors onto the same page for the meds to rebuild my immune system, but I have now run into a rather unexpected hurdle. I was admitted on Friday to start the infusion, and my pulmonolgist, who was overseeing the process, ran a normal blood panel and a U&E. It came back showing an eGFR of 31. The infusion was immediately stopped, and a nephrologist was called. Another doctor to add to my list! He saw me on Sunday and said he needs to do a kidney biopsy, but he needs me to stop my blood thinners before then, so he’s only prepared to do the biopsy next Monday.

    The pulmonologist wanted me to stay in hospital to be monitored but I managed to convince her to let me come home, if I have blood every second day. So now I’m home and researching and see an eGFR of 31 is perilously close to severe kidney disease. I know you battle with your kidneys, and I’m not sure that a PH forum is the place to bring this up, hence the private message.

    The biopsy is to determine if I’ve got lupus nephritis or some other kidney disease. Whatever the cause, I know I’m in for big changes in my life again. I would be so grateful if you could share your experiences with me and maybe give me an idea if what might be ahead. Tracey

    I shared with Tracy that my kidneys were in kidney failure when I was diagnosed. Thank God they stabilized at stage 3 chronic kidney disease for years. Recently, they worsened a bit more, as many of you read about my complications over the past few months. But years of a boatload of diuretics to keep my PH and CHF at bay were to blame.

    Some of our other forum members struggle with managing PH with kidney disease. Would you mind sharing your experiences with Tracey? I know it helps to hear from several others and realize she is not alone.

    Tracey, my dear PHriend, you are in my thoughts and prayers as you wait for your biopsy on Monday. Please know we are here for you and ready to support you through yet another hurdle. We are sorry you are dealing with another bump in the road to recovery. You got this, girl!

  • jen-cueva

    August 29, 2023 at 12:02 pm

    Hi @traceyaustralianmigration-co-za, I have you in mind and wanted to check in and see how things are going for you. Did you have your biopsy?

    How are your kidneys doing this week? Any changes?

    We are here to support you and pray that you are doing better and getting answers. Hugs to you, my dear PHriend!

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