Say it isn't so .. Hello friends !

[harrietW]

Hello friends
After a long absence from the forum lm back. Almost a year has past and things couldn't be any worse. I am sure l will check in and out as time goes on although l will admit that after the last year or so and after my Jan 5th OHS and all the event that followed l really just wanted to get on with my life. Well guess what lol not going to get off so easily.
I am in pretty bad shape and things are not looking good for my future or what little l may have left. I will say this though l have been blessed enough to live long enough to meet my first grand baby boy born April 7th /17
As much as l tried to pretend l was going to get through this and tried to figure out best way l knew how. .
something just keep wouldn't go away infact they just kept getting worse.
So just a very quick update MY MITRAL VALVE IS IN SEVER REGURGITATION ACCOMPANIED BY POLMONARY HYPERTENSION !! I am so disappointed my l year follow 2 weeks ago with my Surgeon who by the way doesn't want to call me in for fear l will NOT SURVIVE THE RECOVERY. ! Of course with 30 transfusions last year and 3 so far this year working on # 4 As Angiodysplasia haunts my every move. Scopes and more scopes tests and more tests ... seems l have actually begun sorting out my life and trying to find some sort of acceptance in all of this mess l'm in.

Although l have continued to work throughout it all l have grown very tired and feel like it's time to let it all go business that l have worked so hard with so much passion ... l just struggle with everything that l do. Breathing has become so very difficult and l am just so done with it all.
l can tell you this ... my resent news has been very sobering to say the very least.
There that felt kind of good to get that out .. good to be back .
Any one with experience with heart disease valve replacement grossly enlarged Right heart , MVR failure x 2 in Sever Regurgitation, Aortic valve replacement mechanical well seated and functional. Angiodysplasia pulmonary hypertension pressure 60 with interstitial lung disease and been told you need another MVR OHS but afraid you will not recover. .. l could use some advice.
TIA

 

[pellicle]

Hey ... long time no hear ... glad you're still here, but sorry that youre back in difficult circumstance.

its a tough question ... I'm not sure I'd even know how to answer that for myself.

 

[harrietW]

Pallicle hello there Yes it's been awhile good to here from you.
​​​​Yes tough questions doctors can't even answer. Pretty sure surgery is out of the question. Mind you l swore from day one l would never ever go through this again.
I am just looking for some very candid feedback on what I can expect from here on out far as functionality what my days are going to look like I know what they are now and how I feel I just can't keep going on like this my chest is so tight it feels like it's going to explode my the pressure from the pulmonary hypertension when I bend over my head feels like it's going to blow off I struggle to breathe everything I do is just too much for me anymore however I am very well aware that things are going to get a whole lot worse. I will never get better so I'm going to get a lot worse what can I expect my doctors are pretty vague however I have set an appointment for 2 weeks from now to go in and have a very candid discussion with my internalist.
Thx you Pellicle for taking a minute to say hi and respond Xx

 

[Paleowoman]

Oh Harriet - I am so sad to read your post. I don't know what to say.......this is all so wrong that this should have happened to you {{{hugs}}} xxxx

 

[pellicle]

Hi

...Yes tough questions doctors can't even answer. Pretty sure surgery is out of the question. Mind you l swore from day one l would never ever go through this again.
I am just looking for some very candid feedback on what I can expect from here on

well we all do things differently to what we think we'll do when the chips are down. To quote from Cloud Atlas "Sometimes survival requires our courage".

The counter side (more to express that I understand your quandary) is "do I want to go through it all again for the reward of being weakened and eroded"

I can't answer that question, but instead turn to a scene from Steinbeck where the lass breast feeds the old man after her baby has died. Sometimes we wish to help someone through that extra day because ... well ... changes and experience are often found right at the end of the movie.

Who knows, as the credits roll and you think its over there is that last scene stuck in there.

As one door closes another opens. I choose to believe that she will be there waiting for me when that door opens.

 

[harrietW]

Anne hello my friend paleowomen
l am very sad to write this post. It has been a tough couple of weeks .. hahahahaha actually years lol
Can you believe after everythingthat MVR that within the first 3 mth it was in moderate regurgitation and exactly l yr later it is in serious condition plus pulmonary hypertension. Not surprising as l knew all along thing weren't right however l actually stopped bleeding for about 2 weeks in Dec my my hemoglobin was up but I knew something was terribly wrong in January my leg started to swell and then of course with this appointment coming up I suspected the worst before I even got there I did see my echo and new by looking at it that I was in worse shape than I went in with a year-and-a-half ago.
It is what it is acceptance is a hard thing.
Now l just read that you are in the waiting room again ... l am so very sorry Anne Xx
lm going to hang with you guys for awhile so l will follow .. Xx ❤ boy this heart business is tough business

 

[harrietW]

Pellicle l like that thank you ! It's never over until it's over. One more scene on more chapter One more surgery. One more recovery ... ?

 

[pellicle]

Pellicle l like that thank you ! It's never over until it's over. One more scene on more chapter One more surgery. One more recovery ... ?

happy to help. When I was in my darkest times a friend said that death is a permanent solution to a temporary problem. I chose to stick around and I've chosen to keep struggling. There is no certainty (I could get hit by a car today) but giving up is of course final.

I recall you had a number of issues with bleeds ... I hope that has been somehow ameliorated or solved.

take care my friend

 

[Seaton]

Hello Harriet …

Lovely to see you back here after your absence, but sorry it's under such incredibly trying circumstances.

I’ll be thinking of you in the days ahead and hoping for much better outcomes.

A big best to you.

 

[harrietW]

Thank you Seaton
Good to be back .. l have taken a peak from time to time but it has infact been a year. Just don't know where the time has gone. I hope to stay close and a little more active here on the forum. As the information and experiences of others is so invaluable.

 

[harrietW]

Pellicle
I recall you had a number of issues with bleeds ... I hope that has been somehow ameliorated or solved. --
no the bleeds are not under control l am afraid to say. That is one if the reasons l may be unoperable
30 transfusions last year and 3 this year. I actually had another scope of many yesterday to see if they could reach the bleeds and it was unsuccessful. Some times my hemoglobin will go from 117 and drop to 65 in a matter of hours other times it just slowly trickles down making some weeks turn to mths before infusion again. It is exhausting.
The GI doc yesterday is recommended another double Ballon endoscopy Yay me either in Calgary or Edmonton under complete unconsciousNess as last time l woke up 10 minutes in and needless to say was a very unpleasant experience with no possitve results.

 

[FredW]

Harriet, I have thought of you often in the past year, wondering how you were and fearing the worst. I'm sadden by your update. I had hoped , like myself, you got fixed and decided to spend time on other things in life than medical issues. You sound worn out, depressed and I can certainly understand that. Life does throw us a few challenges and it sounds like you have had your share of them. Since my OHS, I appreciate each day more, and take time to capture moments of joy and pleasures even if it is just a sunset or my dog asking me to throw her ball.

We struggle to handle the challenges so we may reap the sunsets and wagging tails of our dogs.

I sense you are a remarkably strong woman and wish you the best in your struggles and many more pleasures as you can gather. You remind me of my sister who I lost to cancer. She refused to let it get her down. Given six months to live, she stretched it out for two enjoyable years and never let it deny her those precious moments life presents.

Best hopes to you.

 

[harrietW]

Oh FredW
l was along time recovering from OHS and a total of about 4 mth hospital stay in and out afterwards.
l slowly started back at my Studio which Litterly kept me alive for the last year building my business back to a whole new level. I took my pmu certification and became an educator and started an Academy of Lash n Brow Applications & Certification l am very proud of that .
In and out of hospital for transfusions but never gave up.
I realized in January that l was still struggling more and more and just knew that gut feeling that l wasn't getting better. My recent followup with my Surgeon confirms that.
With strong conviction was told "You need another surgery ! I am afraid to call you in for surgery as you will never survive the recovery" Due to all the underlying issues at hand. This man has done his job for 45 years and has saved 10s of thousands of lives. I trust he knows what he is talking about. By that being said my gut tells me the same thing.
l am considering selling my business to a local and hope to stay on and share my knowledge and train her and continue to work until the end of the year God Willing or until l can't any more. Allowing me to spend more time with my new grand son my son and daughter in law and my mom who has been in care or seniors center for the last couple of years. I try to get up to see her often but she is 2.5 hrs away and sometimes it's just to much. Driving is very hard on me. But yes l am beyond grateful for what l have been given and feel like l am already living on borrowed time. I want to make the best of what's left.
l am one for detail ... l want time lines l want all the senarios l want to know exactlyhow things will play out ... it's ridiculous. . Hahaha hahahaha!
But it's all good! I might surprise even myself as l am no quiter l don't give up without a fight but damn that's what l've been doing for 5 long yrs is fighting. And loving it! Well atleast for the most part.
thanks for weighing in Fred
​​​​

 

[ottagal]

HarrietW,
Will keep you in my prayers that you receive the guidance and strength to see you through this very difficult time.

 

[harrietW]

ottagal how are you ? Thank you for your thoughts and prayers.

 

[Caitlin]

Hi HarrietW
I am someone who can feel for you right now as I have also recently had a couple of blows to my health recently. I too just had my first grandson last August, so I know what that means to you too. I don't know how much I will be posting here, probably not like I did the first time I joined back in 2003, but this community has meant a lot to me in the past. I was real over the top back then. I am more mature now- good thing since I am 75!

I feel your fight, and it is inspiring me not to be so sorry for myself! I have been allowing myself 3 minutes a day to feel sorry for myself; then I get on with it- there is still a lot to fight for.......

 

[harrietW]

Wow Caitlin !!
Hahaha! Well l've been known to be a little over the top myself .. from time to time.
l am sorry to hear you are also having a tough go of it. Thank you for taking the time to post and you taught me a good lesson to live it out by .. 3 minutes that it & l want you to hold me to it !
I lived my whole life to hold my Grand Son and watch my son hold his son. I love them both so much and my daughter in law for loving them.
You are in my thoughts & Prayers Caitlin Xx Bless you

 

[Nocturne]

Harriet,

I don't know you, but I am concerned for you.

Sometimes, a person just does not know what to say, and this is one of those times. What is happening to you is not fair, and not right.

I hope something wonderful happens.

 

[dornole]

Harriet, I don't know what to say except I am sending hugs and wisdom for you and your team to decide what if anything can be done to improve your symptoms, and what is the best path for you in terms of work, family time, maybe relocating to be with family, all of that. I did not enjoy my short-lived experience with pulmonary hypertension and edema at all and you have so much more to deal with--I admire your spunk but I wish you had an easier road to travel. I hope you are able to get sleep (nights were the worst for me) and do at least some of the things you love. Hugs.

 

[honeybunny]

Aw (((((((Harriet))))))

I follow you on FB and because I didn't see any posts about health issues assumed you were well healed and was happy for you. I am so sorry you are facing another crisis. Sending positive energy your way. Keep us posted. As you can tell by the responses, we care.

Michele