Say it isn't so .. Hello friends !

[harrietW]

Nocturne
Thank you ! Honestly what does one say ? I need people to know that many wonderful things have happened to me .. l truly am a miracle and have seen many miracles in my life. I lived through many terrible thing and the trama of the firsts OHS l will say this "It was Hell" l lived long enough to hold my Grand Baby and today l got to do what l love most Spend the day in my studio which has kept me alive literally training and educating. Today was my 57 th birthday and my grandson sent me a picture of him in his mother's arms. Lol That was pretty wonderful. Sometimes you wake up and know that there will be know more miracles for you and that maybe it's because someone else needs one.
Thx you for you wishes for wonderful things to happen.

 

[harrietW]

Nocturne
Thank you ! Honestly what does one say ? I need people to know that many wonderful things have happened to me .. l truly am a miracle and have seen many miracles in my life. I lived through many terrible thing and the trama of the firsts OHS l will say this "It was Hell" l lived long enough to hold my Grand Baby and today l got to do what l love most Spend the day in my studio which has kept me alive literally training and educating. Today was my 57 th birthday and my grandson sent me a picture of him in his mother's arms. Lol That was pretty wonderful. Sometimes you wake up and know that there will be know more miracles for you and that maybe it's because someone else needs one.
Thx you for you wishes for wonderful things to happen.

 

[harrietW]

dornole
Thank you ! I see your in the waiting room for MVR what did they do for you pulmonary hypertension? I it was our first high temperature today reaching upwads of 27 ° it was not pleasant l am not looking forward to a predicted drought season here in my area this summer.
Yes l am trying to sort things out in my head and thing in order l suppose without dwelling and without being negative but l am a realist and facts are facts odds are odds what the Heck else does on do except work in acceptance and Pray for some sort of happy ending or atleast a pain free one God Willing.
Trying to stay strong is becoming somewhat of a struggle especially when you get home and face the aloneness. I will travelto my family for mothers day.
Thx you dornole

 

[harrietW]

Michele
Honeybunny
thanks fir the follow hahaha hahahaha! Most ppl have stopped for that exact reason .. l stopped posting about my health or heart issue other than my regular Give Generously post every time l have a transfusion lol
Pretty grateful for all the Blood Donors to say the least. I think l posted from Calgary after l saw my Surgeon for follow up on the 19th of April. Asking everyone if they ever just felt like running away .. lol I had to call the help phone in the underground parking to let me out because my ticket was scrunched into a ball and l couldn't get the arm to go up to let me out .. the nice lady on the other end of the line could feel my distress and let me out for free of charge .. Thx goodness!
That's why l came here again to the forum ... people the people have absolutely no understanding of what all this means. They are busy living life and don't get what living with heart disease really means. Ppl are tired of hearing it but not you ppl you get it. Xx
Michele Xx

 

[dornole]

Well mainly I had a C-section at 27 weeks gestation to get the extra load off my heart -- that produced an immediate significant improvement in the pulmonary hypertension and pulmonary edema. Then a few weeks later a repair. Because my main issue was stenosis, I was able to have this done via an angioplasty-like balloon procedure. They can't do it if the regurgitation is too bad because it tends to worsen the regurgitation at least one level. This is the procedure I had which is obviously much less traumatic than surgery.

Percutaneous Mitral Valvuloplasty. A valvuloplasty may be used to treat stenosis (narrowing) of the mitral valve. During valvuloplasty, a thin catheter (tube) with a balloon tip is used to stretch or open the mitral valve. The catheter is threaded to the heart from the blood vessels in the groin.

I assume your cardio team is on this and it is not an option for you, but if you are in any doubt I guess it couldn't hurt to ask.

 

[dornole]

Now I think of it, have they talked to you about TMVR using the same balloon kind of procedure? Definitely experimental but if you are not a candidate for OHS, maybe that would be an option now or if your symptoms and quality of life worsen further. My cardiologist has done a couple dozen of them here in Minneapolis and I'm sure many other docs around the world are also testing various devices and procedures.

 

[harrietW]

dornole
Thank you for refreshing my memory. I believe now that l read this somewhere along the way a yr or 2 ago. The heart catherization l had 2 yrs ago through the groin to measure pressure no ballooning at all of course. I am a level 4 now for the second time mitral valve regurgitation. So unlikelythey would do this. I am mewing with my doc on the 16th hopefully to have a very frank discussion about where l am at and where l am going.
they seem to have put focus back on the angiodysplasia. I had a scope through my stomach on Wednesdayno luck finding bleeds . There are again determined to send me back to the Foothills Hospital for a double Ballon endoscopy again. . Not a great experience the first go around and no bleeds were found but all times l am actively bleeding. Go figure ..
The bleeding cousession alot if stress on other organs and particularly hard on the heart so seems to be back on the table.
Xx

 

[carolinemc]

harrietW, Never give up. You can't just give in. You are young and vibrant person. I was 38 when I had my replacement St. Jude's aortic valve. I feel better, except getting a broken down body. But it is not easy, but I have to do for myself. No time to feel sorry for myself. It is frustrating, lower back pain, keeping up with the medications, keeping up with the blood draws for Warafrin and Type 2 Diabetes. But I keep pushing myself along, no matter how hard it gets. MY heart is the healthiest thing, and am grateful for it. But never let anything get you down. Keep on going. And you can do it. Hugs for today.

 

[Midpack]

Harriet, sad to hear these news. The following quote came to my mind:

Those who are weak don’t fight.
Those who are stronger might fight for an hour.
Those who are stronger still might fight for many years.
The strongest fight their whole life.
They are the indispensable ones.
— Bertolt Brecht

Wish you the best.

 

[harrietW]

carolinemc
So sweet of you maybe to some it sounds like l have given up but let me tell you l have put up on Hell of a fight. My heart isn't the healthiest thing l've got and l'm not operable my mechanical aortic valve is good howevery my repaired mitral valve is not. My heart is enlarged and weakening l survived my first OHS against all odds l now have pulmonary hypertension and have had interstitial lung disease for 5 yrs diagnosed & angiodysplasia random spiratic and mostly constant internal bleeding. I feel weaker every day.
l have pushed through alot believe you me and l will go until l cannot anymore that hardly makes me a quiter. I am tired and the struggle is real. I own my own business and go to work every single day including the day before open heart surgery and the day l hot out of the hospital after 4 mth . So l'm not a quiter but l am a realist however. Being prepared and lightening the load for myself isn't giving up. It's getting smart and getting real.
Xx Good advice though thx you

 

[harrietW]

Midpack
Thank you !
Heres to being indispensable !

 

[ZechariahLi]

Harriet, you are an inspiration. People here are cheering you on! You won't just see your grandson in your daughter-in-law's arms, you will have him in your arms, youre gonna tell him stories about his dad, youre gonna tell him how proud you are for his dad and his family. When I first find out my BAV and severe AR, I was in complete shock, I couldn't imagine how much more you guys have been through and I certainly don't want to pretend I know how it felt. You will be in our prayers! Happy mother's day! 

 

[harrietW]

ZechariahLi
Honestly. . What a beautiful message to wake up to on Mother's day ! I cannot thank you enough. l also cannot tell you how much love that brought to my Heart and how many tears rolled down my cheeks. Thank so very much for believing that all things are possible. Your words are kind and loving and inspiring. ..
Beat on Brave Heart of mine for there is so much more to see and do and feel.
Thank you .. l have no words.
& to all you beautiful mother's
Happy Mother's Day Xx ❤

 

[Warrick]

I can only reiterate what everyone else has said here, can only hope it works out the best for you !!!

 

[harrietW]

Warrick
Thank you .. so much love and encouragement here. I can't believe l stayed away so long ..
l think sometime after surgery we just want or hope to put it all behind us and move on with our lives .. That is atleast what l tried to do and here l am again staying nice and close .. support here is the very best there is.
Xx

 

[Paleowoman]

Hi Harriet - we were thinking of you even while you were away, concerned for you. There was another new member a few months ago joined with bleeding issues similar to yours who was about to undergo surgery wanting to know if anyone else on forum had the same problem so I pointed out a link to your earlier threads. I don't know if she was able to contact you. Anyway, yes we really care about you - it's awful that you are suffering so {{{hugs}}} xxxx

 

[jwinter]

Hi Harriet--I am the above mentioned member and have read much as Anne pointed me in your direction.

First and foremost aren't those Grandchildren great!? What a gift to us and what we need to help us through those darkest hours.

My story is long so will just touch on what brought me here and following yours and others' journey.

I had my first surgery and was given a tissue valve as I was unconscious at the time and mid fifties in age. Shortly thereafter I started to have bleeding episodes and have been transfused several times. In between first and second valve surgery I have seen several specialists and things finally subsided a bit. Last spring I had my full cardio work up in February with a clean bill of health. By May my valve was stenosed severely, had to have several transfusions and ended up in Mayo for my complete workup and eventually mechanical valve

To shorten this I will just say that my recovery has been quite a bit longer this time but things are falling into place. My last doctor appointment they said my blood was low again and they felt I should see another specialist.....to which I said I was taking a break! If they could not find where I bleed at Mayo I don't think they will anywhere else!

I wish you the very best Harriet, and will follow your journey. Please know that there are lots of people out here that do care

 

[harrietW]

Paleowoman
very comforting to know thank you for that. I suppose l just kind of vanished trying to move forward and so tired of the whole mess. I just worked at what would keep me preoccupied and pushed to rebuild my business. Honestly l don't know how l did it.
There cam a point where I just said enough l couldn't do it anymore the test the poking and proding and in and out of hospital that l just couldn't take it not one more test hospital stay doctor blood work labs feeling sick. Of course l continued to to get transfusions and lab work but said at one point you need to let me out you can not hold me hostage anymore you need to figure out a way to treat me from the outside world.
In tge first part of this year after 2 transfusions l said where the hell do we go from here ? What are we going to do ... and of course the answer became more scopes another double Ballon endoscopy l immediately refused l don't need to remind anyone of my last last one. Then all the sudden l got a call from tge hospital fir another scope of my stomach which of course came up empty. No bleed although l was very clearly bleeding and have been on and off since my last transfusion in Feb or March can't remember Yes it was March. They can never find the bleeds when l am bleeding. His recommendation is go to Calgary or Edmonton for another Double Ballon endoscopy. After my last consultation I just figured why why go through one more test all that pain in another hospital under anesthetic which is extremely dangerous for me. Last time I was under last week my heart rate went 71 over 45 which is ridiculously low dangerously low.. next time I might not wake up. It might just be the end of me so why continue !! I have a consultation with my internalist tomorrow morning for a very frank matter of fact conversation about my situation I want some hard cold facts. I also want to know why am I not on a nitro patch why am I not on Lasix I haven't gotten a phone call or any follow-up after my consultation with my surgeon about my pulmonary hypertension or my enlarged heart or I haven't even had a lung chest x-ray in over a year.
I am tired and the struggle is real.
l will update after my appointment tomorrow.
Xx

 

[harrietW]

Paleowoman
very comforting to know thank you for that. I suppose l just kind of vanished trying to move forward and so tired of the whole mess. I just worked at what would keep me preoccupied and pushed to rebuild my business. Honestly l don't know how l did it.
There cam a point where I just said enough l couldn't do it anymore the test the poking and proding and in and out of hospital that l just couldn't take it not one more test hospital stay doctor blood work labs feeling sick. Of course l continued to to get transfusions and lab work but said at one point you need to let me out you can not hold me hostage anymore you need to figure out a way to treat me from the outside world.
In tge first part of this year after 2 transfusions l said where the hell do we go from here ? What are we going to do ... and of course the answer became more scopes another double Ballon endoscopy l immediately refused l don't need to remind anyone of my last last one. Then all the sudden l got a call from tge hospital fir another scope of my stomach which of course came up empty. No bleed although l was very clearly bleeding and have been on and off since my last transfusion in Feb or March can't remember Yes it was March. They can never find the bleeds when l am bleeding. His recommendation is go to Calgary or Edmonton for another Double Ballon endoscopy. After my last consultation I just figured why why go through one more test all that pain in another hospital under anesthetic which is extremely dangerous for me. Last time I was under last week my heart rate went 71 over 45 which is ridiculously low dangerously low.. next time I might not wake up. It might just be the end of me so why continue !! I have a consultation with my internalist tomorrow morning for a very frank matter of fact conversation about my situation I want some hard cold facts. I also want to know why am I not on a nitro patch why am I not on Lasix I haven't gotten a phone call or any follow-up after my consultation with my surgeon about my pulmonary hypertension or my enlarged heart or I haven't even had a lung chest x-ray in over a year.
I am tired and the struggle is real.
l will update after my appointment tomorrow.
Xx

 

[harrietW]

Ups ... lol ! Got carried away with the post button :Smile: