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    • #31568
      Colleen Steele
      Keymaster

      @traceyaustralianmigration-co-za I’m also posting your update here to make everyone has an opportunity to read it. I know everyone would like to offer you their support.

      UPDATE FROM TRACEY

      Hi Everyone,

      I’m not going to lie, the past few weeks have been really, really difficult and things are taking a big toll on my body. I’m really struggling with shortness of breath, dizziness, fatigue and overall weakness. Some days I feel like I’m just of no use to man or beast.

      Anyway, be that as it it may, I met with the cardiothoracic surgeon yesterday and he was pretty full on. He sure doesn’t pull his punches but I really liked him and he’s got a brilliant sense of humor. He’s basically said that I’m at a real crossroads and I’ve got tough choices to make. I can choose to do nothing and he doesn’t think it’s likely I’ll see the end of next year, or we can do the mitral valve replacement surgery but I have to accept how high risk it is for me. He says that because I’ve had a previous stroke I will wake up with all the stroke symptoms, he can’t say how long they will last but it is certain to happen. I will for certain be on dialysis and he can’t guarantee that I’ll come off it. I will be in hospital for an extended length of time but there’s no benchmark for him to say how long because I’m so complicated. He can’t say I’ll come off the ventilator or that I won’t get an infection. But he does say that having the valve replacement will improve my symptoms and I will have a better quality of life.

      So long story short I need to decide if I take a chance, hope for the best and a better quality of life or if I pass on the surgery and accept that I won’t live for much longer.

      And I need to decide soon because he says things are precarious.

      But he says either choice is a valid choice and he’s not going to try and sway me.

    • #31573
      Susi Steppins
      Participant

      Wow.

      Hello @tracyaustralianmigration-co-za

      It sounds like you have some tough decisions to make.

      I am so sorry about that.

      I don’t really know you but I think that when someone has to make decisions like this that we need to keep in mind that it is our decision to make and nobody elses.

      I hope that you find the right answers for you and that you have the support you need to get through this.

      I will be sending you very positive thoughts and wishes.

      You can do this and the end result will be the right one.

      Take good care Tracy and please let us know how you are doing when you can.

      • #32673
        Rickie Daniels
        Participant

        Oh my goodness, Tracey, may God speed you on this journey.

        Rickie

    • #31574
      Roger Bliss
      Participant

      @traceyaustralianmigration-co-za

      I hope and pray you make the right decision that works for you. You might consider getting a second opinion as a different doctor may find something the other one missed.

      Keep us updated and let us know what we can do to help support you.

       

    • #31582
      Jen Cueva
      Keymaster

      Hi @traceyaustralianmigration-co-za, my heart aches as I read this update. You have been through so much this past year, it seems, already.

      I am sorry that you are progressing and have some tough decisions to make and quickly. I want you to know that we are all here and want to support you as you make these tough decisions and take that next step, whatever that may be.

      I won’t lie; this would be tough for me, too. The pros and cons are not looking great. But for me, quality of life is important, too.

      I know that you will dig deep and discuss what will be best for you with any other medical team members. My thoughts and prayers are coming your way to SA as you figure this all out.

      I wish I had more to say that would help you, but only you can decide. I am sending extra big hugs and an abundance of love your way from Texas, my PHriend.

    • #31608
      Jill Upshaw
      Participant

      Go with your gut. You live in your body and nobody else. I agree with Jen that quality of life is important. It is important to me also. You will make the right decision. My thoughts and prayers are with you. No matter what, you will know what the right thing is at the time and you will have the strength to do whatever your decide.

    • #31611
      Darla McCollim
      Participant

      I’m in the same but different pickle. I need Pulmonary OK for robotic surgery with my head down and feet up. They were murmuring I may now be stage 3 due to the dizziness, sob, etc.  If I don’t get the ok then I can’t have the debulking surgery for my cancer. Both will dramatically reduce my life span. Yuck. I much prefer choosing between a cookie or some ice cream.

    • #31624

      Tracey,
      You have a lot on your plate, and undoubtedly your mind, to handle. It is very difficult to make such impactful decisions, but with help from your family and assessing risks and benefits on both sides, you’ll get there. Your surgeon seems to be on top of his game and up for the challenge which is always a plus in the surgery option. Best of luck with the process and lots of support going out to you from all of us.
      Lisa

      • #31633
        Jen Cueva
        Keymaster

        Hi @lisa-michele-mikolajczak, I love the support that you offered Tracey while dealing with a heavy plate yourself. This is why I love our amazing members.

        I have had you in my thoughts and prayers. @traceyaustralianmigration-co-za, I was on vacation at the end of last week. How are things this week, any updates?

    • #31650
      Sally Hoffman
      Participant

      Tracey, just know that whatever choice you make, we are here sending you love and support.

    • #31666
      Tracey
      Participant

      Hi Everyone,

      Thank you all so much for the unconditional support and understanding. It truly means the world to me and I appreciate every one of you.

      I’ve really had sleepless nights over this but I have done a lot of research and my pulmonologist has been very helpful in explaining the exact risks and what my percentage chance of survival is based on historical data.

      Before I was diagnosed with PH and mixed mitral valve disease I had a full life and pretty much never let my existing comorbiditiies get to me. I’ve always been a take the bull by the horns kind of person and have never let much stand in my way (stubborn some might say), so I feel as if I would be letting myself down if it don’t have the surgery. I want to give myself the opportunity to try and get a bit of my old life back if for no other reason than to be able to maybe have the strength to take the fur babies walking, even if I have to be on a scooter. My “surrogate” children got engaged last weekend and I would love to be able to see them get married- they are both so neglected by their parents I’m determined to be there for them. I have to know that I’ve done my best for all my children if I do nothing I’d be letting them down.

      I’m hoping that I can have the surgery on the 28th but I’m waiting for the surgeon to phone me back to finalize things. My biggest decision now is whether to go with a tissue valve that lasts about 10 years, or a mechanical valve that last a lifetime but I would have to take warfarin.

      I’m scared out of my mind but I’m trying not to over think things and just acceot my decision. It’s very confronting being faced with your imminent death, and there are times that I find myself crying when I think about what could happen either way, but I just need to try and stay positive. @colleensteele, I do see a therapist and she has been very helpful and together we will get me mentally ready which the surgeon says is half the race won.  Please also let Cullen know that his bravery had inspired me.

      I hope you’re all as well as you can be, and I’ll let you know the final plans.

      • #31668
        Colleen Steele
        Keymaster

        @traceyaustralianmigration-co-za I hope you don’t mind my saying, but I had a feeling you would decide on proceeding for many of the reasons you mentioned. Needless to say, you continue to be in my thoughts and prayers.

        I hope they are able to schedule it for the 28th and not make you wait much longer. Which valve are you leaning towards?

        I teared up when you mentioned how Cullen has inspired you. I will let him know, Tracey. You are pretty darn inspirational too!

      • #31676
        Jen Cueva
        Keymaster

        Wow, @traceyaustralianmigration-co-za, this update has me in tears once again. I can feel your excitement and also your fear as you share your decisions with us.

        I can only imagine the many tears and thoughts you have been going through as you made this difficult decision. I am happy that you have talked with a therapist, too.

        In the short time that I have known you, I thought that you would make this decision. As you mention, I thought of you as the “take the bull by its horns” type of woman, no doubt.

        Are you thinking about the mechanical valve, so it does not have to be replaced?

        Congrats on your kiddo’s engagement. That is something to look forward to, as well as walking and spending more time with your fur babies. These are the things that keep you motivated, right?

        I am keeping you in my daily thoughts and prayers. I hope that they can do this procedure on the 28th for you. Please do keep us posted to send you lots of extra positive thoughts and prayers that day.

        You are one tough cookie, and I know that things will go well for you. You have been through so much already, and YOU got this, my PHriend.

        I love how you shared that Cullen’s bravery is an inspiration to you. He , like you, are both kick butt people in my book.
        -Love and hugs coming your way from Texas.

      • #31729
        Roger Bliss
        Participant

        Don’t blame you for being scared……anyone in your position would be. I can’t imagine the stress you are under. I am sure you made the right decision on this. If I was in your shoes…..that’s what I would do. Yeah…..I know easier said than done. You have enough prayers headed your way, to make things come out ok.

    • #31740
      Jen Cueva
      Keymaster

      That’s so kind of you and supportive, @wheeldog. I know that @traceyaustralianmigration-co-za will appreciate your support when she can get on and update us all.

      Tracey, I am keeping you in my daily thoughts and prayers, my PHriend. Please know that we are here and waiting when you feel like you can update us.


      @darlarayne
      , how about you? How are things going with your difficult situation? Thinking of you and sending you much love and prayers. Please let us know how we can best support you during such a difficult time.

    • #31780
      Mendo Bruce
      Participant

      I play poker online as entertainment that does not require exertion and keeps my mind active. Poker is an activity that requires me to quantify and react to risk.

      The first question I would ask the doctor is what are the odds of each possible outcome? Understanding that the odds are somewhat arbitrary and can’t be known for sure, what have been the outcomes for patients similar to you?

      Without being able to assign odds, making a rational decision is difficult and boils down to how risk averse you are personally.

      • This reply was modified 4 months, 2 weeks ago by Mendo Bruce.
      • #31782
        Mendo Bruce
        Participant

        Sorry, I answered this before I saw that you had already made a decision. With the information given, I agree with the decision.

        • #31800
          Colleen Steele
          Keymaster

          @mendo-bruce I like that you shared the poker suggestion and I’m sure Tracey appreciates the fact that you cared enough to respond.

          How have you been doing?

    • #31855
      Jen Cueva
      Keymaster

      Hi @traceyaustralianmigration-co-za, you are on my mind this morning. I wanted to let you know. You may not be able to respond but know that you are in my thoughts and prayers.

    • #31860
      Tracey
      Participant

      Hi guys, sorry I’ve been a bit absent just trying to deal with everything. I got a date for surgery from my doctor last week.  October 5 is the day.

      I’ve been pretty ok with my decision, but today I’m really, really anxious. I think I just realized that its just over 2 weeks away, and I feel like I need more time to prepare myself. I think I’ve been pushing the anxiety away with thoughts of what might be possible if this works out,  but today it’s not working.

      I’m trying to stay positive and dream about walking the dogs 🐕 but it’s becoming difficult. Today I have more fear of leaving them, than the positive thoughts.  But tomorrow is another day, and I’ll just have to deal with this an hour at a time.


      @jenc
      strangely I’ve been thinking of you too today, and hoping tnat the tropical storm hasn’t been/isn’t causing too many problems.

      I really so appreciate everyone giving me encouragement, and hope. It means a huge amount to me.

      • #31861
        Colleen Steele
        Keymaster

        Oh @traceyaustralianmigration-co-za I so appreciate your taking a moment to update us. You have really been on my mind. Having a set date will understandably up the anxiety but hopefully your mind will allow you to feel excited about too. It sounds odd to suggest excitement over a serious procedure but take it from a mom whose son had a heart and lung transplant, it is ok to feel excited. Just think of the possibilities this will hopefully provide you! I want you to feel happiness and good health! Praying for you Tracey!

      • #31866
        Roger Bliss
        Participant

        I think anyone would be anxious in your position. For me I like to get procedures done as soon as possible. I have a tendency to over think things and find thinking about the procedure is worse than the actual event.

        Prayers for a successful surgery!!

    • #31880
      Jen Cueva
      Keymaster

      Hi @traceyaustralianmigration-co-za, I do know that this must be difficult as you wait for this procedure. But, having a date soon is excellent news. I am so grateful that you popped on and updated us all.

      Anyone in your position most likely would have some anxieties, but you also have those things that you mention to look forward to. Things like walking your fur babies, spending time with your kiddos soon, and ao many other things to look forward to after recovery.


      @wheeldog
      is like me; I tend to overthink things if I wait too long, too.

      But, @colleensteele shares that life post-transplant was exciting to look ahead and vision. It is OK to feel many emotions at once.

      And no worries, my PHriend, I am good. We had some slight damage and power outage for a bit but safe. Please focus on yourself. Remember, we are here and will be with you as you get through this season.

      Extra hugs, prayers, and love are coming your way from Texas.

    • #31890
      Jen Cueva
      Keymaster

      Thinking about you, @traceyaustralianmigration-co-za, as I know your emotions must be all over the place as the date of this procedure nears. You are in my many thoughts and prayers. I am looking forward to learning more about your recovery before long.

      You got this, my PHriend! We will be here waiting, as will; your fur babies.

    • #31901
      Tracey
      Participant

      @jenc, it feels so good to be going to sleep tonight knowing that I have so much support and care behind me. @colleensteele, I get exactly what you’re saying about being excited. There are times that I find myself daydreaming about how much better things may be, and it certainly does give me a lot of hope. But the closer I’m getting to the date, the more I’m vascilating between excitement and wanting this to happen yesterday, and abject fear and a strong urge to call this all off. I’m not the kind of person who shows her emotions easily, but for the last few days I find myself crying at the drop of a hat. Anything  sad on TV is too much for me right now, I seem to be deeply connecting with other peoples’ pain. And don’t get me started on the kiddos and the fur babies. I just need to hear Hannah or Marco’s voice and it sets me off, and I can’t bear to think of not being here for the fur babies. But these two things are what keep me going forward. So I’m going to drift off to sleep with Enzo’s head resting of my legs and Billy curled up into my side.

      • #31909
        Jen Cueva
        Keymaster

        Sweet PHriend, @traceyaustralianmigration-co-za, you are certainly cared for, loved, and supported by so many here.

        I can not imagine the tears and emotions. Let the tears flow when that happens. We must allow ourselves to feel these emotions and then move through them. I, too, was not one to show emotions many years ago. But as time moves on and the longer with PH and other health concerns, I am learning more to allow myself space to feel all of my emotions.

        At first, I worried about what others would think. But guess what? Those who love you love you no matter what. Share your thoughts and concerns with others as you feel comfortable.

        We are here with you every step of the way. There is no right or wrong way to feel. But allow yourself those thoughts, then go back to thinking about the future and those plans you look forward to doing with the kids and fur babies.

    • #31990
      Tracey
      Participant

      Tonight I’m feeling a bit hopeful. I was watching a program Surgeons at the Edge of Life earlier and it featured a lady having a liver transplant and she said that for 2 years her life has been consumed by illness and things can’t get any worse. It got me thinking, my surgery will be 8 days before the 2 year mark of diagnosis and I haven’t had my life since then. Things can’t get much worse than they are, so I’m feeling positive about things about moving on.


      @colleensteele
      I’m also very much looking forward to saying I’m sorry a whole lot less  I’m tired of feeling guilty every time I have to ask for something and I’m particularly tired of feeling like my sisters life has had to be put on hold. I did that for my mother so I know what it’s like  and while she never complains, her partner makes it pretty clear that I should be feeling guilty and apologizing. I’m looking forward to telling him where he can get off.

      Tomorrow I might be back here crying, but tonight I’m feeling peace with things.

      • #31993
        Colleen Steele
        Keymaster

        @traceyaustralianmigration-co-za you come here any time you want to vent, laugh, cry…whatever you are feeling and want to express! Honestly, I think of you every day and praying hard that everything goes well for you. I want so much for you to feel healthier and able to enjoy the things in life that mean the most to you.

      • #32005
        Jen Cueva
        Keymaster

        Hi @traceyaustralianmigration-co-za, I am grateful that watching that show offered you hope. I like the mindset that you took away from that.

        But, as Colleen says, you come every day if needed. We are here to support you through this journey.

        Tears laughing, yelling, whatever it is, allow yourself the space to feel each of these emotions.

        I’ve had you in my thoughts and prayers as we are almost in October. The closer it gets, you will probably go through so many emotions. That is OK.

        Think of us as your prayer warriors, or your cheerleaders, cheering and partying you through this.

        -hugs from Texas

    • #32057
      Jen Cueva
      Keymaster

      Hi @traceyaustralianmigration-co-za, I wanted to let you know that I have you in my thoughts and prayers. This is the big week. YOU got this, my friend.

      I will say some extra prayers for you and your surgeons tomorrow. Please know that I am wrapping you with love and sending positive thoughts and prayers to you in SA from Texas.

      This is your time. I look forward to hearing an update as soon as you are up to it. Please know that you are not alone. We are all with you in heart.

    • #32059
      Tracey
      Participant

      Thank you @jenc  it’s pretty nerve racking at the moment, but I keep telling myself that this time next week it’ll mosly be over. The cardiologist saw me a couple of hours ago for another echo and has now swung 180 degrees and is insisting on a tissue valve rather than a mechanical valve. Apparently I now also need a tricuspud valve repair. I’m a bit thrown, I’m a make a plan and stick to it girl, but I’d rather things get done properly first time around. The surgeon has also made his rounds and now says there’s a device he’d like to use for the tricuspid repair, but I have a limit on the value if the prosthesis that can be used in a year by insurance, and that limit is reached almost entirely just with the mitral valve. Theres not much that I can do about it now with it being after hours, so the surgeon says he’ll speak to insurance tomorrow and see what they can do. I’m on the theater list for 7.30 so I’m not sure how this is going to happen but I’m sure the surgeon will make it happen. The anesthetist has also just been to see me and boy is she a straight shooter. Some things she said made me feel better  some things not so much. But she has experience with PH patients and I feel safe in her hands. I could get myself into a state now, but there’s no point so I’m just going to try and get some sleep. Thank you my PHfiend for caring, I’ll update you as soon as you can.

      I miss my babies so much already and I’ve only been away for a day 😪.

      • #32066
        Colleen Steele
        Keymaster

        Dear Tracey,

        I remember when they were prepping Cullen for transplant. I swear I could feel the thoughts and prayers of friends and family surrounding him. That is how I hope you will feel tomorrow. We care a great deal about you and will be anxious to hear how you are doing when you feel up to sharing that with us.

        Big long distance hugs to you!

    • #32060
      Jimi Mcintosh
      Participant

      Tracey, I hope everything goes well, put your faith in a power greater than mankind, keep fighting and do not give up. Remember doctors “practice” medicine. I have experienced so many changes in my health and treatment over the past year, that I had to take a mental, physical and emotional break. Now , I am preparing to claim my healing and not let PH, PAH, or whatever it is called , steal my thunder.
      your children are missing you too and they are preparing to see you again after this procedure is done. I share my “glory” with you

    • #32065
      Susi Steppins
      Participant

      Hi Tracy.

      I will be thinking about you tomorrow.

      Everything will be fine.

      It sounds like you have some very competent people taking care of you.

      Know that there are people here wishing you well and waiting to hear how you are.

    • #32070
      Jen Cueva
      Keymaster

      Wow, @jimi, so happy to see your post. I’ve been worried about you, buddy.

      This is all while dealing with many health struggles, yourself. This makes my heart happy as I read the generous outpouring of love and prayers with @traceyaustralianmigration-co-za today as she has her procedure. Your heartfelt words of encouragement certainly will make Tracey smile when she can read this.

      As @s-steppins and @colleensteele mention, know that you are in our thoughts and prayers.

    • #32100
      Colleen Steele
      Keymaster

      I haven’t heard any updates from @traceyaustralianmigration-co-za. Not that you need a reminder, but do keep her in your thoughts and prayers.

    • #32102
      Tracey
      Participant

      Hi everyone very quickly I’m on the other side of surgery. Very very sore but grateful things have gone so well.

      • #32111
        Colleen Steele
        Keymaster

        @traceyaustralianmigration-co-za my eyes filled up the moment I spotted your update! Oh my gosh I have been so worried about you and praying! THANK YOU for taking a second to let us know that you now have surgery behind you and are on the path to recovery. Just a word of advice…don’t rush it. Everyone recovers differently so take your time and don’t push yourself. Your body just went through a lot and needs a good amount of TLC. Thoughts and prayers continue!

      • #32114
        Roger Bliss
        Participant

        Congrats for a successful surgery!! So glad to see you able to post on here. Thoughts and prayers headed your way for a quick recovery!!! Keep us updated the best you can.

    • #32103
      Jen Cueva
      Keymaster

      OMG @traceyaustralianmigration-co-za, I am so happy to see this quick post. You did it, girl, now rest and recovery as they say. You will be back home to your fur babies before you know it.

      You are in my continued thoughts and prayers. What a blessing and such joy in my heart as I popped in and saw this.

      You are loved, my friend. I’m sending you gentle hugs from Texas.

    • #32169
      Sally Hoffman
      Participant

      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

    • #32183
      Jen Cueva
      Keymaster

      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?

    • #32222
      Jimi Mcintosh
      Participant

      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.

    • #32244
      Jen Cueva
      Keymaster

      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.

    • #32246
      Jimi Mcintosh
      Participant

      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.

    • #32252
      Colleen Steele
      Keymaster

      @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!

    • #32280
      Colleen Steele
      Keymaster

      @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.

    • #32356
      Jen Cueva
      Keymaster

      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?

    • #32525
      Tracey
      Participant

      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.

       

    • #32545
      Jen Cueva
      Keymaster

      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.

    • #32563
      Colleen Steele
      Keymaster

      @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.

    • #32664
      Tracey
      Participant

      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.

    • #32667
      Jen Cueva
      Keymaster

      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.

    • #32674
      Lesa Worsham
      Participant

      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.

      • #32679
        Jen Cueva
        Keymaster

        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!

    • #32685
      Tracey
      Participant

      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.

       

      • #32719
        Colleen Steele
        Keymaster

        @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!

    • #32698
      Jen Cueva
      Keymaster

      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.

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