Up- date / Re-op has anyone gone from mech to tissue

[pellicle]

Hi

Pellicle hello hope you are well enough ..

indeed well enough thanks for asking. "Externalities" (as the exonomists would call them) are doing well, and my health right now is pretty good.

I wanted to really grapple with what you wrote, but could you please use some punctuation, because it makes reading hard without it. Some of those sentences were well over the 100 words long. It makes grasping the point hard (I pasted it out into an editor , reformatted it from a single monolith and then read it ... just to make sure I was doing it justice.

When I was on the phone we laughed and joked and after getting off the phone I became very conflicted and
fearful and then relieved and in deep thoughts most of the day.

I'm not sure what to think to be honest.

my view is that the best decisions come from careful consideration and perhaps even conversations. So its all good and a good sign to me.

Absoulutly exhausted all the time hemoglobin is low 80's and I'm waiting patiently for it's a drop to at
least 70 or below in order to be transfused so I'm literally walking around in limbo for weeks sometimes on
end in the 70s and 80s Zero Energy my heart starts to act up my INR Rises obviously when my hemoglobin is
low I sleep 16 hours at night I could goes to bed at 6 so very concerning to me that I have to live the
rest of my life like this and it does feel like the only option to do tissue replacement with a very high
risk.
...
When my blood is low my legs don't work properly I'm in pain I'm nauseous all the time and I hate my life
the way it is.

I can see that, and there was plenty of times during the 4 months I had repeat debridement surrgeries and wound redressings with a VAC pac and a PICC pump attached to me all the time (them beeping at night and waking me up). So I can see why you'd be willing to take risks ... l mean its not just because you "can't stand the ticking"

as you identify ... its a high risk proposal ... however you've been trying at this for some years now already. So to me you've given it a pretty fair try.

but here's my thought if I don't make it I don't make it would be better than having to live like this.

To begin answering this I will say that in the year following the passing of my wife (which included all the infections and debridements and ****) I looked carefully many nights at my shotgun as the way out of my situation. As may be clear that I'm writing this here indicates I didn't pick that. So I understand what you may be feeling when the possibility of a good outcome from a sugery is better than that of the shotgun in my neck (Finns historically have preferred a neck shot).

Choosing a surgery (with its known possibilities and risks) is clearly a choice with possibility of an improved life (rather than just ceasing it) ...

My biggest fear is having to recover after surgery cuz that is how was out the first time and I don't expect it to be any better the second time seems like pretty drastic measures to stop bleeds and get off warfarin but I have no other alternative is no other options no other input.

no two ways about it, the risks of that being a tough recovery are almost a total certainty. I put forward that its possible that you'll exchange one set of issues with another, perhaps keep the bleeding but gain some more ... but at least there is a some chance that it will improve things.

As I see it with what I know ...

So I will go up to my appointment see what he has to say I mean risk factor I don't really need a number

such would be a fiction anyway because there is nothing quantifiable here ... you know the risk is high, but hope is built on risk. If I may quote from a movie

"If we can make it to the ground, we'll take the next chance. And the next. On and on until we win... or the chances are spent."

it resonated with me when I heard it. It phrased into words part of how I live my life.

although altimate the decision is going to have to be mine

it always is and can only ever be. I get tired of the occasional person here who seems to feel it important to remind everyone of that ... as if we're kids whos bed he's sitting beside...

If you want to blabber more about this (just to get **** off your chest even) email (hotmail ... you know pellicle right?) me and I can call and talk / listen ... my plan gives me 300min / month to the USA (and I've got whatsapp as well)

Best Wishes

 

[jwinter]

Well I had to look up angiodysplasia, Harriet and yes, it truly fits my symptoms but have not seen a diagnosis from any of my docs. I did have esophageal varices that bled off and on but were kept under control with the banding they do to them. After a few years of that though my blood vessels in the stomach started making their own ways throughout my stomach area. I then had procedures to cauterize and band them also (these were found doing a lower endoscopy opposed to the upper that found esophageal varices ) Added to this was the colonoscopies, transfusions, and iron fusions.

I see when looking up the angiodysplasia that both the taking of blood thinners AND stenosis of valve are both risk factors. Once again, damned if you do and damned if you don't.

Yes, I got sick and tired of being sick and tired. You are not alone in that at all. I was discharged from one hospital with no diagnosis and was so darn frustrated that I pulled my own IV's out, got dressed and headed out. Probably not my best move but my patience wears thin.

One nurse I have gotten close to through all this told me this. What you need is a diagnosis and plan moving forward. I now live by that and this week all my tests sent to California and Mayo should be in and I will meet with the hematologist. He uses a microscope in his office (have seen him using it) and truly is interested in helping me through this (probably will get a big award and trophy) He also had me do a round of steroids in hope of that doing something. My last hemoglobin was 10.6 and has never been this high and my iron has returned to my body (I had zero, none a few months ago)

The body is truly amazing. I have PBC on top of everything and have had a hole drilled in my liver and put a shunt in that helps the filtering process for me.

Seems like I had these two heart surgeries and a dam burst loose. My pressures, both of the heart and gut were cut loose and my body could not keep up.

Pellicle gave some solid advice above and I think if you are comfortable you should email him or call him. Sometimes we ALL need a little help along the way. You are very strong going through all this and I have no doubt that if you decide on the surgery, this strength will help you through.

Oh by the way, that nurse I wrote about......we are birthday sisters as both born in February and both 62. She is going through cancer and chemo right now and works 12 hour shifts at the hospital. She is a true inspiration when I get to feeling sorry for myself. Why her? why you?, and why me?

Sorry this got off topic some for the valve forum but I STILL think there is some kind of connection and if it helps even one other person it needs to be said.

 

[harrietW]

Pellicle
Hahahaha oh my goodness how l have missed your sense of humor your attention to detail and your voice of reasoning.

I do appolagies for my 100 word sentences .. Lol
l was so afraid it wouldn't post if l stopped to edit my voice to text .. Lol.

You certainly did break it down for me. My words my thoughts you're right most times you just need somebody that reiterate or shoot back at you or kind of take a look at things from a different perspective. I do get high anxiety I do tend to find it hard to make a decision sometimes.

Although I can be indecisive at times I have gambled with my life in it's entirety and so to gamble and double down seems appropriate.

Thank you for your voice of reason and your offer to further discuss this. I may just do that one day. Once l get a more clear cut picture of what this will all look like if that even possible.After my trip to Calgary to consult with the surgeon l may take you up on that.

Odds don't seem to be an issue.
You helped me see the jumbled thoughts on my head a little bit clearer. I thank you Pellicle

 

[harrietW]

Jwinter
You're a true worrior!
I couldn't imagine having all those other issues on top of this. I would be very interested in hearing what the results of your test and your consult back from Mayo have to offer you. I hope you share that. It may help me some how.

Pellicle is a wealth of knowledge as you mentioned and l am sure he will hear from me in the near future. He has been through the worst of the worst and still has an amazing since of humour and an eye for perfect grammar along with punctuation. Something l fail miserably at.
Hahahaha

Thank you again all of you for the feedback !

 

[pellicle]

Hi

thanks for you kind words ...

You helped me see the jumbled thoughts on my head a little bit clearer.

its the most anyone can do ...

I have gambled with my life in it's entirety and so to gamble and double down seems appropriate.
+
Odds don't seem to be an issue.

I think I see you have your answer bubbling up right there ...

Best wishes mate

 

[pellicle]

Actually Harriet

credit where credit is due ...

... has been through the worst of the worst and still has an amazing since of humour

from what I've gleaned over these past years of your posts, you have too. I'm just saying this so as you don't do the classic "impostor syndrome" and fail to notice that you too have kept fronting back for another round in the ring.


You're a veteran at this too mate ... you'll be fine ... I'm sure you'll find a steady hand to roll those dice at that meeting.

Best Wishes

 

[harrietW]

A very quick update
Finally Sat down with my regular internal medicine doctor who's followed my case for the past 5 years who has been managing my angiodysplasia and my INR xcetera. So I went in for a consultation to talk to him about my upcoming consultation with my new potential surgeon 2 take out the mechanical valves and replace with tissue valves long story short he said to me " if I were your son I would tell you not to have this surgery if you were my mother I would tell you not to go through with this". His concern is not my aortic valve he has no problem with that being replaced with tissue. His biggest concern is my mitral valve he feels the risk is extremely high and he hoping that I will reconsider. He would also like to send me to a new cardiologist in Edmonton and a surgeon consultation in Edmonton versus Calgary.
Reminder I have an appointment in Calgary on Monday afternoon. I told him that I was going to that appointment and wanted to hear them out he agreed. I'm bringing my son and daughter-in-law for extra set of ears.
l reminded him that l didn't want to continue on like this and would rather Go on the table than have to go through the rest of my life hooked up to a bag of blood. I was tired worn out exhausted and quite honestly feeling hopeless. He was very sad that l said that and showed great concern and compassion for my situation and that I've ended up in such a terrible predicament and although I reminded him of the gratitude that I had for getting me through this far I needed him to be on my team no matter what decision I made and of course he agreed that it didn't matter what I decided that he was going to be there to see me through it. He would always help me and do his best with my best interest at heart. I need him.
We needed this conversation as we aren't in the same page as far as this surgery goes and then there is also the tricuspid valve . . to be replaced as well. Not to mention the extreme complications of the constant Internal Bleeding. Which he is not convinced would stop even off the warfarin.
I will update sometime after my consultation with the surgeon on Monday. I know they are anxious to do this surgery and I have become more and more in favor of it until last night speaking with my internalist sound kind of back to square one.
update soon . ..

 

[pellicle]

Hey Harriet

... long story short he said to me " if I were your son I would tell you not to have this surgery if you were my mother I would tell you not to go through with this". His concern is...is my mitral valve he feels the risk is extremely high and he hoping that I will reconsider.
...
l reminded him that l didn't want to continue on like this and would rather Go on the table than have to go through the rest of my life hooked up to a bag of blood. I was tired worn out exhausted and quite honestly feeling hopeless. ..

its a tough call, tougher than any I've been witness to.

I can only say that I think you need to discuss this again (if that's something which would help) with your kids / family because the risks are high that you'll come out perhaps worse off (or "sideways better" with different problems).

I know your other problems (angiodysplasia and AC therapy exacerbating that) but it would be just **** if you came out with A-Fib and needed to be on AC therapy anyway.

Probably most of what I may want to say is not "proper" for such a public forum.

However I would say that I hope that in reflection and discussion you can find either peace with what you wish to do, or strength to defer it.

Best Wishes

 

[jwinter]

Harriet, Hard decisions for you to make at this time. I have been in just about the same place you are so I truly know how hard of work it takes to get the answers you need to go forward.

I am glad to see you are making more appointments and seeing more doctors. It seems like a person just HAS to get more opinions when you just don't feel right about something. Time to use your own gut instincts and keep searching until you find an answer. Also, those extra sets of ears are good to take with you.

In hindsight (and this is just my thinking) I had no bleeding problems until both of my valve surgeries. My first was porcine and then mechanical. In between these surgeries I also had balloons and stints done. I think my body had gotten so used to my original valve that when all was opened up and running like it should it just could not keep up. Yes, I have an autoimmune liver disease but it sat dormant and probably would have for a lot longer if things didn't get stirred up so much. One cardiologist called it the "Waring blender effect (affect?)"

I am very happy to tell you though that with the help of many many doctors and me pushing all their buttons and being a real pain in their behinds.....I am healing nicely and have had no issues for over a month. Hemoglobin check this next Tuesday and then I am going to politely decline further visits for awhile and get on living my life.

Go get em Harriet. Don't let up on them and if they don't help you, move on to others that will! You can do it!

 

[harrietW]

Matters of the ❤ #memberofthebrokenheartsclub
After over 2.5 yrs since Open Heart Surgery & over dozens of test scopes & over 100 Blood Transfusions & 100's of Hospital visits & many Hospital stays .. Countless Specislists Hours of Consults & much deliberation. I have met with my first surgeon and on Monday with my family present met with my New ❤ Surgeon & Signed a new Time Share Contract
I will be having another Open Heart Surgery in January 99.9% sure no specific date yet but January to fix this Broken Heart of mine & potentially stop or atleast minimize constant Daily Internal Bleeding that has prohibited me from living #mybestlife #getonwithit #GodisGreat #hope #grateful #blessed #getitgurl #thankGodforHealthcare #valvereplacement #getbusyliving

 

[honeybunny]

(((((((((Harriet)))))))))))

Here's to you (and jwinter ) for all you've been through. I can't imagine having to deal with all that. Hang tough, ladies.

 

[harrietW]

honeybunny Thank you!
Hope you are doing well ❤

 

[Paleowoman]

Wishing you the very best too Harriet on your way forward xx

 

[Paleowoman]

harrietW Trying to send you a private message but your message box is too full to receive any - can you clear some messages?

 

[harrietW]

Paleowoman
thank you ..
Cleared Xx

 

[Paleowoman]

Paleowoman
thank you ..
Cleared Xx

harrietW - still getting this message:

• Can not send message. User harrietW has exceeded their private message quota.

Have you emptied your Trash ?

 

[pellicle]

Hi

...I will be having another Open Heart Surgery in January 99.9% sure no specific date yet but January to fix this

I'm glad you've found a peace with what you need to do. I hope it brings a favorable resolution to you

Keep in touch

 

[Paleowoman]

Paleowoman
thank you ..
Cleared Xx

Hi Harriet - I haven't been able to PM you as your PM box is still saying it's full, probably your trash needs emptying. I'm going to France now so don't know if I'll be able to get online for a while....will try.

 

[Paleowoman]

Hi @harrietW I just got back from France and find I still can't send you a private message as it says your box is still full - can you empty the trash as that should clear it.

 

[harrietW]

Paleowoman
hi hope you had a great Vacay
You keep sending me this msg to empty my messages that my inbox is full ..
l have sent you back several msg telling you it is not l emptied cleaned out and it is not full.
In the mean time and by doing that have lost some good information that has saved but in a hurry before you left .. I deleted everything .. I sent you my email address but apparently you have not received that.
[email protected]