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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.

    • #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 1 month, 1 week 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

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