Re-op has anyone home from mech to tissue

[harrietW]

Has anyone gone from mechanical to tissue
Hello old friends it's been awhile. Sorry re spell check
I've been kind of busy since the last time l posted ..
Getting blood lots of Blood .. Since my Jan 5 /16 aortic valve replacement and mitral valve repair so much has taken place yet nothing at all.. Still in the same dilemma now as I was then. So approximately 90 blood transfusions in two and a half years and in May I was in the hospital 9 * 7 transfusions 5 and 8 days and then congestive heart failure three times admit it to emerge. Internal bleeding angiodysplasia discovered after open heart surgery and after I was put on Warfarin for life. So they took me off Warfarin 3 weeks ago cold turkey to stop the bleeding and although it didn't stop at completely I haven't had to have a transfusion 4/3 weeks long story shorts last Monday my INR was 1.0 my doctor immediately put me back on warfarin for a week now and of course I'm bleeding again still. So that's a little history I have pulmonary hypertension pressure 65 interstitial lung disease and had a 2-year follow-up with my surgeon 2 months ago May 4th. So during my follow-up my surgeon decided that he wanted a second opinion with a cardiologist at South Campus Calgary to determine whether I'm eligible 4 the tissue valve replacement so take up the Mechanicals put in tissue goal is to get me off Warfarin. I don't even know if I'll survive another surgery to be honest I'm going to go up and talk to the new cardiologist hopefully get a fresh Outlook and some better insight as to how all of that would play out. So if they do the surgery it will be a new surgeon as my previous surgeon has just gone in a year sabbatical. I swore I would never go through that hell again but I can tell you getting transfusions on a weekly basis is also hell. Mitral valve is in severe regurgitation has been 3 months out of open heart to repair and I struggle my struggle with everything most days I want to give up most days I would rather not be here I had a 3 week reprieve so to speak and was put back on Warfarin so I know it won't be long and I'll need another transfusion.
so my question is has anyone gone from mechanical valve to tissue valves what are your thoughts did you have complications what was your other history. Any insight would be greatly appreciated and see the new cardiologist July 11th

 

[Paleowoman]

Hi Harriet - I've no experience of what you're asking but I'm glad that your surgeon is getting a second opinion about surgery again. I can't imagine tthe hell you've been going through the past two and a haf years. Do keep us posted {{{hugs}}}

 

[harrietW]

Paleowoman hi
thank you l will keep you posted. I shutter to thonk about it. I haven't recovered from the first one but we are running out of options if you can call it that. I am in the mind set to go til l can't anymore ..which might be sooner than later.
Xx.

 

[Warrick]

Hi Harriet good to hear from you again! Bless the blood donors !!
I can't answer your questions but feel your plight.

 

[pellicle]

Harriet

I'm so sorry to read that you're *still* having the bleeding issue after all this time. That's just horrible.

I have read of someone here going from a mechanical to a tissue, but its a bit of a tricky topic to search for. None the less I'd say its "just another valve op" and (having had a few myself) can't really see why it'd be impossible to go that way.

Honestly (examining your situation) I agree with you that would be a good option. I still shake my head at the surgeon who ignored your issues and signed you up for that, but that's of no consolation to you I'm sure.

If you go that path (reoperation) I hope that it brings an end to this horrible situation.

Best Wishes

 

[Patsman07]

Hi Harriet,

I spoke to a fellow Irishman prior to my surgery. He had opted for the Ross procedure to avoid warfarin. He had been researching for years and told me he had spoken to people who had gone from mechanical to tissue because the sound of the ticking was driving them nuts. Do it does happen. As Pellicle said its just another surgery, can't see how the mechanical to tissue makes it any worse, plus they should be able to fix the mitral valve while they're at it. My surgeon told me he dies a re op every week so it's common enough. Really hope it gets worked out for you

 

[harrietW]

Warrick
Yes ! Thank God for Blood Donors
I would be dead 10 times over at least
I am very grateful and very blessed.
Thank you Xx

 

[harrietW]

Palicalle hello
Thanks for weighing in .. Yes nothing has changed its been the worst ever. I thought this was a one and done deal .. Guess l was wrong. I believe it is certainly possible however going in the first time my odds weren't really in my favor to begin with. I'm in that catch 22 damned if l do damned if l don't stage.I can't believe l am even entertaining the idea.
thx U Xx

 

[harrietW]

Patsman07
Hello Thank you for your input. Yes l do believe it's pretty common these days. I had a nurse in emergency tell me she knows if a gal who went from mechanical to tissue. "She misses the sound of the clicking" now.
l would need to know for 100 % that l wouldn't ever be back in warfarin or there would be no point to redo.
l am slightly afraid l would remain on it for PH as it is also one of the ways to control embolisms in the lungs.
Thank you for your input much appreciated.
I will say that kill me or cure me on ok with My biggest fear is ending up with further complications and having to live with that.
Xx

 

[pellicle]

.... Yes nothing has changed its been the worst ever. I thought this was a one and done deal ..

while it won't change what you are going through, perhaps you may wish to reach out to this poster here and see if you can't perhaps help one another:
http://www.valvereplacement.org/for...7228-4th-ohs-for-valve-replacement-in-8-years

 

[pellicle]

harrietW I was going over your old posts trying to sort out something in my head and found this one:
http://www.valvereplacement.org/for...en-t-going-to-belive-it-did-someone-say-leak-

where you say:

Although this was not the entire focus on my follow up after 11.5 weeks as you know l've been in hospital in another city every since l was released from that city and that hospital.
His response was l'm sure glad l didn't replace both of your valves with a mechanical valve as first thought or the probably would have both blocked and seized and you wouldn't be here right now.
...
I wish l had known you had angiodysplasia before surgery.

I had for some reason thought you'd reported this as being a problem (bleeds) before valve selection, although I couldn't find that, or any discussions in valve selection prior to surgery.

None the less I know gazing into the past can not change the future (or maybe help the present), but its something I do myself anyway.

Did you ever pursue legal action?

 

[harrietW]

pellicle
Hello hope you are well ..
Thank you for your response. No l did not take any legal action 2 reasons 1) l didn't have any fight in me when l was so angry and needed ever once of energy l had. 2) This past 3 weeks is the only time since surgery l have felt somewhat human and not angry until l was put back on Warfarin 1 wk ago. Waiting for lab results back tomorrow. I will say l am unhappy as almost instantly l became blotted and uncomfortable and gross after even my first dose of warfarin. I really argued about going back on and of course know the bleeding is active.
l spoke to a lawyer who was going to get back to me about 6 mths ago and never heard from him again. I was too sick to chase him down and have not pursued another.
I was texting back and forth with Becky via email back in June of 17 and we never really came to much of a conclusion however her undiagnosed internal bleed had no source or name. l suggested angiodysplasia and a possible pillcam might help with a diagnosis. That was my last conversation in June and I see her last post was July 13th 2017 so it's a year that but as long as I have been out of action. I became quite ill and was just trying to get through my days I guess and we never spoke again. Now I know she was supposed to be going for her fourth surgery. So now I don't know what came of that I just read through our messages from a year ago.
l will see what a few more day in warfarin will take me and if course at ten my consultation with this new Cardiologist on the 11th July. Mostly l want all the facts & to hear her out and knowing there is no Guarrentee or if l am really even a candidate with the extent of Interstitial lung disease and of course PH if they would even get me of the lung /heart machine. That was their biggest concern 2.5 yrs ago and l am in a lot worse shape now.
God only knows.
Thx Pellicle Xx
Oh and yes l had bleeding going on prior to surgery but no diagnosis. For at least 3 yrs but never transfusion for blood loss until after surgery.

 

[pellicle]

Hi

pellicle
...No l did not take any legal action 2 reasons 1) l didn't have any fight in me when l was so angry and needed ever once of energy l had.
...
l spoke to a lawyer who was going to get back to me about 6 mths ago and never heard from him again. I was too sick to chase him down and have not pursued another.
...
l will see what a few more day in warfarin will take me and if course at ten my consultation with this new Cardiologist on the 11th July.
...
Oh and yes l had bleeding going on prior to surgery but no diagnosis. For at least 3 yrs but never transfusion for blood loss until after surgery.

the whole saga just sucks of failure to properly engage with you and your medical needs, side stepping blame (in the part of the medical specialists) and what seems to me preying upon someone who is in a weakened state.

I feel rather frustrated that there is nothing I can do except watch it play out.

Best Wishes for a good outcome mate.

Stay strong (well as you can).

 

[harrietW]

Thank you Pellicle
frustrating is an understatement !!
I wonder everyday how it will all play out where will it end.
but in the meantime l will check back with an update ..

 

[honeybunny]

So sorry you are still dealing with all this, Harriet. Please keep up posted. I hope you get answers at your doctor visit.

Hugs,
Michele

 

[jwinter]

Hi Harriet, I have have been down road similar to yours but will try to stick with the heart valve as it has been pointed out before to others that posts should pertain to the heart valve.

Porcine replacement valve, 2012 (rheumatic fever as child) and the bleeding began shortly thereafter. Vomiting blood, esophageal varices banded, transfusions began. Liver biopsy and further testing showed I have PBC and non alcoholic liver disease. Porcine valve lasted about 4 years and I had my mechanical valve surgery at Mayo November 1, 2016. Liver team was on board and if liver crashed I would be first in line for transplant.

Shortly after second OHS things went down again. Transfusions began again and continued off and on until last fall.

I had colonoscopy and endoscopy last fall that were deemed OK. Right after that I had transfusions one day, CBC drawn next day, and transfusion the .next day for about a month. I went to see a hematologist and he did bone marrow biopsy. Clear from cancer but no iron in my bones even. Iron infusions followed and I won't bore all with the rest. Up and down until I, like you, was at the end of my rope. Sooo.....

Hang on Harriet! I cursed myself for that mechanical valve decision but have decided it was the best thing I could do. I have had so much done and that valve just keeps on keeping on, solid and strong! At this time I know I could not face another open heart as my body and immune system is weak. My INR really behaves, and every doc comments on my strong strong heart.

Please don't take this as an argument for the mechanical valve as it is a very personal decision. As for me? Love mine and am currently bridging with Lovonox shots, INR therapeutic before the bridge, hemoglobin up, and loving to hear that "noisy valve" going in my chest. It is my lifeline!

Will be following your journey closely and hope you get the help you need from the docs. Speak up and be heard!

 

[harrietW]

honeybunny
Hello Thank you !
I will
Xx back at you

 

[harrietW]

jwinter

Hello and thank you !!
you have most certainly been through a quiet the ordeal. I am sorry you have had to go through all of that. You mention one thing that stuck out to me I have a heck of a time with my iron we can't seem to get it up we can't get it to stay up for over a year my iron level was at 3 and prior to that it was at 6 two weeks ago it was at 2.6
That was the day they took me off Warfarin I have no idea what it is right now but my INR dropped to 1 of coarse I wasn't taking Warfarin for 3 weeks today it was 2.1 so I'll check back in a week they didn't have my hemoglobin reading I should have it tomorrow I have lost some blood not a substantial amount at this point.
l had iron infusion for the first time in April 2 units 2 wks apart it was almost immediately after that I had all those transfusions in May. That is not been my worst the first 4 months after surgery I was hooked up to blood almost 24/7 and of course my iron was very low they gave me plasma along with blood. My doc insists on oral pills they Don't work.
during my follow up with my surgeon in the 4th of May which is where they recommended the new cardiologist in Calgary surgeon suggested I be put on darbepoetin suggesting that would work he had no idea obviously that they had take me off Warfarin for 3 weeks. The bleeding isn't stopped my internalist who has a copy that same letter obviously hasn't suggested it.
They have a heck of a time stabilizing my INR It is all over the place of course when l start to bleed heavy it shuts up to 3.6 5.8 due to low blood levels. I do not have a hematologist and I do not have INR specialist so to speak I have an internalist who was assigned to me after surgery which I lost my lung doctor I lost my cardiologist and was told to follow only the instructions of my internalist my surgeon on the other hand thinks that I need an INR specialist and a hematologist or hematologist but won't recommend one cuz I'm in a different city so I stick with my internalist

l am also afraid of the silence.

They say my liver is good except of course when l go into CHF
I cannot produce red cells fast enough to keep up to the bleeding.

Thank you for sharing you story l also was a case of rheumatic fever as a child my mom swears by but my doctors say l must of had it about 30 yrs ago now . And so l possibly had it twice .. My valves particularly the mitral is very badly diseased.

Xx l will check back in

 

[jwinter]

Harriet, My heart pressures and stomach pressures they found were very high(imagine that after over 50 years of stenosed valve). Everything started flowing again and almost too much. If pressures are high the body tries to make other paths to keep pushing blood through. I ended up with varices and even tears in my stomach lining(Mallory-Weiss Syndrome) Then it finally happened. The blood and iron they gave me would flow over my liver and into my lower intestine. Blood everywhere then. My INR would go up over 6 each time this happened but would settle as long as I could keep everyone from throwing more and less warfarin at me all the time. I begged until they just "chilled" and eventually it came down after trauma. Warfarin (at least for me) has no brain or mouth to tell docs what to do and the only signs I could see was that it would have a bouncing affect. It tried to work with my body but about the time it was just about right some hero decides I should take large amounts more or less and it bounces again.

Be your own best advocate. Read as much as you can and don't let them shut you out (silence). I finally had to have a hole drilled and shunt put in my liver and ALL IS BETTER!! I nagged and went to every ER I could, went over my primary docs head and set up an appointment with hematologist. (They are specialists OF THE BLOOD). Don't wait for anyone but yourself, drag yourself in there until they are sick of seeing you if necessary. Hate to say it but "the squeaky wheel gets the grease"

Bottom line. They have to find where you are losing blood. It simply cannot drop like that without it coming out somewhere.Cannot stress this enough!!! I am told there is some blood loss with this valve but is minimal. I don't have high iron and never will probably (7-8) but am slowly getting myself back.

Don't know a lot about the iron infusions yet. First ones did not work as I had active bleeding. Second ones worked and brought levels up a bit.

Now some may not believe this is a valve related post but I will tell you I had very few problems before my two replacements. Some of us just have to get the rest of the body to cooperate.

I still think the sun will come out again! Do take care and please don't read into this reply more than what it is. An attempt to help one another and I mean that sincerely.

 

[harrietW]

Thank you jwinter
l have alot of pressure since valve replacement surgery
I will say l have been in such excruciating pain due to pressure around my esophagus and swelling I read that last night and haven't stopped thinking about it. I have pulmonary hypertension which I know is different but the pressure there is 65 that I know from a recent Echo but the pressure and the swelling in my abdomen and stomach is ridiculous. I feel like I'm 9 months pregnant which I am clearly not. However 3 weeks off warfarin the swelling went down I actually thought I was losing weight and I started to feel a bit better and they put me on Warfarin and almost instantly my stomach's became bloated again not to mention the rest of my body. Yes my Warfarin INR was six 6 the last time I was in the hospital 3 weeks ago when they took me off the warfarin.

I do understand taking things into your own hands my internalist didn't think I needed a follow up with my surgeon I made the appointment anyways I went to Calgary I'm going to see this cardiologist against my internal s recommendations. There's one hematologist in this town and I blew a chance to speak to him one day when I was getting a transfusion he was standing right next to me but he was talking to a liver patient so yes I am pushing for answers and hopefully one day we'll have them but I don't know that that requires another open heart surgery anyway thank you again. That information that you just shared had me got me thinking about some things so I'm just going to keep plugging away here I will stay in touch.
Xx