Y'all aren't going to belive it. Did someone say leak 😡

[rnff2]

Just throwing this out there. Is there any way that they could replace your mechanical aortic valve with a tissue valve and also replace your leaky mitral valve while they are in there. Not that you want another surgery, I've had 3 and don't want another if I can help it. But if you had tissue valves you could stop the anticoagulants which may help your bleeding problems. Again this is just a thought, my cardiologist told me about a patient that had a mechanical valve change to a tissue valve because of issues with her anticoagulants.
Good luck with your follow up.

 

[harrietW]

rnff2
I appriciate your input forsure! I actually thought of that l can't believe l would even consider it or that the thought even entered my mind. God bless you for surviving 3. My recover has been an absolute nightmare right from the first second l awoke often surgery and one of the first thing l said was never again and l wish l could undo everything that l just went through it was so painful and tramatic l just don't think l got it in me. If all my problems would disappear l might actually think about it although someone said the other day they didn't think you could go from mechanical to tissue after the fact.
I will however discuss this with my cardiologists and internal med doc next week. They were going to consult with other physicians to come up with a more solid game plan. I really gotta hand it to my ent med doc .. he has worked really hard for me on this one and l haven't given him much credit. I will sit with him again Thursday.
Thx rnff2 you've really been fought a good fight too Xx

 

[pellicle]

Hi

...right from the first second l awoke often surgery and one of the first thing l said was never again and l wish l could undo everything that l just went through it was so painful and tramatic l just don't think l got it in me. If all my problems would disappear l might actually think about it although someone said the other day they didn't think you could go from mechanical to tissue after the fact....

actually that thought has crossed my mind too ... and that you said everything you've said it just may be that without such a thing that it simply won't get better.

That you woke feeling bad from day 1 indicates to me that they did something wrong. I can assure you that as my chest was healing I knew that it wasn't fixed and that I'd be up for a 2nd debridement surgery. I really did not want to face it, but I did. For sure that's a whole different level, but my point is that if I needed that surgery to improve the next 10 years i'd do it.

I've never heard that you can't go from a mechanical back to a tissue, but I guess that it will depend on valve sizing. Tissue valves seem to be more oriented to smaller valve diameters.

I would keep an open mind and bring this up with your cardiologist as you said.

Whatever you do, just don't (don't even think about it) go back to that hospital and that surgeon. Knowing nothing more the things you have reported he's said are abominable. I strongly suggest you consider the hospital Julian Du suggested.

Best Wishes

 

[harrietW]

That is the hospital JulienDu suggested pelicle. . lol ! And Durham is there right now same hospital same doctor.
Well now that you explained or mentioned the valve size my first thought is no way it would work but l don't know. He used a 23mm carbonetic and enlarged my aortic root 23mm to accommodate it and he said because l was a larger women. . I am a big girl but l don't know why he enlarged it to be honest. It served me for 55 yrs the size it was .
Pellicle thx u for your input on this !
I don't know nothin about nothin and seems everyday l know less than the day before.

 

[Paleowoman]

Hi Harriet - I'm afraid I too thought that it might be suggested that you have a re-op to change the mechanical valve to tissue one right back when you first mentioned Heyde's syndrome but I didn't like to mention it, not being a doctor. It would be an awful lot for your body to bear after the problems you'd be having. I suppose the fact that the cardiac surgeon didn't suggest that means something ? And he didn't think it a good idea to cut out bits of your intestine - it would not resolve the problem since it's not your intestines that are wrong but the angiodysplasia that is the problem. He suggested you see an anticoaguant expert - did he refer you to someone ? Also is there an expert in Heyde's syndrome/angiodysplasia you could see ? Seems to me everyone is a bit laid back about this Harriet - I do hope your internal medicine doc or the cardiologist become a bit more proactive. xxxx

 

[JulienDu]

That is the hospital JulienDu suggested pelicle. . lol ! And Durham is there right now same hospital same doctor.

No, you had your operation in Calgary in the Foot Hill Medical Center. I had my operation at the Mazankowski Alberta Heart Institute in Edmonton. Just by the name you can see that there is a difference. The hospital in Edmonton is only dedicated to Heart issues. This is the no1 center for Heart related problem in western Canada and consider the no1 in Canada as they are the top facility in the whole country for heart transplant. The most difficult patients in Western Canada are sent to 2two of the many Cardiac Surgeons that work in that hospital. I have a cardiologist in my family France that even told me that it was one of the top 3 hospital in Northern America for heart issues. they had huge funding from the oil and gaz industry.

If you consider a Redo this is THE place where you should go. I do not know why you were not sent there in the first place considering that you were a very difficult case and the equipment and competence of cardiac surgeons is superior. My surgeon did talk for 15 min about any bleeding history during our first meeting considering that the Mechanical valve was a risk for people with bleeding events, even small one as they would amplifie ( unless you were 100 percent sure to fix them before). Did your surgeon require dentale care before surgery ?

Only replacing a valve on a healthy first operation patient like Bushman is considered to be a very very easy operation but in your case, you had 2 valves + lungs issues.

I strongly suggest that you consider this hospital, as your experience in Calgary has been very mediocre. As Pellicle said, your very hard recovery could also be the result of either a poor surgery or the amplification of your bleeding. I also had 2 operations, I can relate to what you are feeling even if your experience is much tougher than mine.

 

[harrietW]

Good morning Paliogirl
My Surgeon was writing my Ent med doc with his thoughts and possibly a referral. I will know better Thursday. I think my ent med doc was a bit Perturbed with my surgeon And said he has know idea what we have been through and what we have done and how hard we have worked to figure this and how quickly we have acted so for him to say no surgery on your intestines or to see an anti coagulation specialist is l think a bit arrogant of him. And it just hit me that my Surgeon actually saw my first discharge papers and reports from my first emergency room visit and 3 week hospital stay. He most curtainly didn't pick up the phone to me or to my doctor down here and ask any questions or offer any support. So l think l know my ent med doc said he would be calling my Surgeon. It took them until l did the pill cam to discover angiodysplasia how else could it have been detected when bleeds are random and spontaneous. . I think it was virtually impossible. They did stop the bleeds in the jujunum there were several. . And have made attempts to get at the small intestines without the stress and trama of another major surgery. The bleeds obviously have stopped due to NO WARFRIN ASA and so forth. And of course the second l restart so will they. And as you know we can fix these cut them out and have new ones tomorrow. It's a hell of a Predicament to be in. They do need to be Methodical and cautious about what they do next. I honestly don't know what to think .. l just know right now in this moment l have been given an 18 day Reprieve From the bleeding transfusions and lock down in some hospital. I am grateful for that l have my sanity to worry about being locked up in hospital for weeks at a time is not good for this girl. Praying for the best possible solution.
Thx Paliogirl
Yes if you had suggested a redo surgery 6 weeks ago l woulda lots it. Lol ! Might be the best solution

 

[harrietW]

JulienDu hi
So l was possitve that at one point you mentioned Calgary and that was a while back forgive me for getting that wrong. I've had alot on my plate and lots has happened.
I just wanna say this the Foothills Hospital in Calgary has a reputation for one of the leading Heart and Stroke care centers in the country. The Libinn Center and University of Calgary and doctors are also also Amoung the best. My Surgeon was actually hand picked and sought out after a very long long process. Some of the top cardiologist and echo stenographer and angioplasty /heart Cath experts work and teach out of the Foothills Hospital Libinn Center So how could l possibly know to make any other dission. My mother has suffered from 8 strokes and was taken there every time because of its reputation as being the best. That doctor also saved my girlfriends life 3 times.
Trust me from down here Edmonton doesn't nessesarly have the best reputation. I am 55 years old and was born and raised in Calgary and also lived in and worked in Edmonton both at the Mez and The Aberheart Hospital back in the late 70 early 80's so l am familiar. My Surgeon also has a reputation for trickery or complex cases. It's to late now as my choice on the recommendation of 2 cardiologist a lung doc and a GP and 2 Ent med docs. All concurred that this was the best doctor Surgeon for me. This man is also in his 60's and has saved 10's of thousands of lifes How on God's green earth was l to know anything else.
I didn't just choose some random doc ... ok know l'm venting lol !!
So the question is where do we go from here. ??
I guess l will hear what they have to say next week but ln all honesty l am good where l am today here in this moment. . No bleeding, no pain, at home just where l wanna be.

 

[JulienDu]

The Mazankowski was not here in the 70's 80's ( was set up differently I mean). You can compare data from that period to modern data. I stick to my point, the toughest heart issues in Western Canada are dealt in Edmonton, call any cardiologist in the west and they will confirm it. And Edmonton is the capital of Canada for heart transplant now. The hospital is supra modern. I am sorry HarrietW but I do not understand why you keep convincing yourself that the facility where you had your surgery is the best one when you see that your surgeon did not catch on the bleeding before the surgery ( he is over 60 so maybe is brain is half working now ?), that he did not replace the heavily damaged valve, that the repair he did on your mitral was a failure and all the so called doctors you talked to planned on fixing an internal bleeding after you are on warfarin for life....this was utter non sense. They screwed up, it's obvious, now if you want to stick with a team that screwed up for a Redo that is your personal choice and I understand it. All I hope is like you say, you feel well for now and you do not have any more bleeding and you put all that nightmare behind.

 

[harrietW]

JulienDu
Mesericordia !!!!!! We use to call it the Mez and yes infact it was there in the 70 and 80's and yes l worked there. l didn't say l worked at the Mazankowski just so we're clear l said Mez !
My point is how was l to know and yup sure was alot of mistakes made no question !!! Do you honestly think that there are no mistakes made at the Mazankowski cause if you do your sadly mistaken. It's your need to be Right is a bit bothersome to me. No one including me said that l was going to have a redo at the same hospital or the surgeon or that a redo will infact even happening at all. We are being hypothetical !! l don't even know if it's an option Yet !! So when l post that l did something or worked somewhere or telling my story it is not nessesary for you to research whether or not something even existed or if it's true or not. Do you honestly think l am making this **** up as l go along. I may not be as articulate as you would like but l am older and maybe even just a bit wiser. I didn't just arrive l've been around awhile and furthermore l find it offensive that you scrutinize every little thing l say.
Enjoy your day JulienDu !!

 

[rnff2]

I really hope you get some answers this next week. I think you have a good plan in place by talking with the doctors you trust. I have found I am so much more calm around the doctors I trust and they give me a sense of security and I am able to be more reasonable and rational about my care.
As far a switching out a mechanical valve for a tissue valve I do know it has been done (at least once in Chicago) because my cardiologist and I discussed it and he specifically said he has a patient that recently had it done. I also know sugerons don't like to reoperate soon after an operation, something to do with scar tissue and the body's response. So maybe that's why they aren't mentioning it are trying another route first, less aggressive approach.

Best of luck with everything! I'm glad your safe and happy at home right now, that's the best medicine for you at this time. Hugs!

 

[harrietW]

rnff2
I agree and l am not sure that a redo so soon is the best option either. I had a hell of a time first go and l am sure all that pain and suffering was mostly as a result of an undiagnosed angiodysplasia. I have not known of anyone in as much pain although l am sure there are many. At 3 week discharge l was actually a bit jelous of a 70 yr old woman being discharged at 5 days and then making a 3 hour journey home straight away. She was in the bed next and l never heard a whimper not even once.
They is no bleeding so l am happy to wait for some well thoughtout options.
Thank you !

 

[Paleowoman]

And it just hit me that my Surgeon actually saw my first discharge papers and reports from my first emergency room visit and 3 week hospital stay. He most curtainly didn't pick up the phone to me or to my doctor down here and ask any questions or offer any support.

I'm under several specialists and they cc their reports to my GP to each other as well and, as a result, I've discovered that doctors don't usually read reports until the patient is sitting right in front of them. And even GP's don't always read reports until the patient is sitting there. The only time they read the report straight away when it's received is if their secretary picks up something that needs acting on right away or something dreadful and alerts them. Mind you, your emergency room report should have been alerted to your cardiac surgeon when his secretary/clerk received the report. Too often there are only clerks doing this who have no medical knowledge and no idea when to alert the doctor. {sigh}

 

[JulienDu]

Yet !! So when l post that l did something or worked somewhere or telling my story it is not nessesary for you to research whether or not something even existed or if it's true or not. Do you honestly think l am making this **** up as l go along. I may not be as articulate as you would like but l am older and maybe even just a bit wiser. I didn't just arrive l've been around awhile and furthermore l find it offensive that you scrutinize every little thing l say.
Enjoy your day JulienDu !!
Thank you !

I dont really care if you think it is offensive, I speak my mind, problems here are too important here to be politically correct, I won't change so I guess I have nothing to add on that post. And no you are not wiser cause you did not investigate bleeding and Warfarin, things that I did.

 

[harrietW]

Hi Paliogirl
That's all true but infact that how l know he read the report or atleast delivered directlyto him by his assistant she's on top of everything and she gave it to him she told me she did. So from Feb 18th he knew maybe he didn't read it but he should have l just left his care. Yes they don't usually look until your right there or moments just prior to.

 

[Paleowoman]

Yes he should have read it Harriet ! I'm angry for you - I can't believe how badly things have gone for you. Again, I'll say, I do hope that one of your other doctors is more proactive as that's what you need Harriet xx

 

[harrietW]

Thank you Paliogirl
I am angry but need to find peace or stay peace through this. Resentment is my enemy. It will not serve me well. Yes my ent med doc l am confident in and my cardiologists. Thx u Xx

 

[pellicle]

Harriet

earlier you wrote:

... and don't let them do intestinal surgery as once we start cutting into and removing parts of you intestines they cut til you don't have anything left.

and there was some question of what he meant in your later writings. I think that what he means is that some Gastro Dr's may be a bit incautious and just "lets snip this and see if that gets it fixed" which is quite unlike what a cardiac surgeon has to do in terms of planning. I think he was emphasising to YOU that YOU need to emphasise to THEM that you won't just consent to "oh, well go in an cut what you want, just fix it" ... he was (my reading between the lines here) emphasising that you need to advocate for yourself, that you need to be in charge because if you don't advocate for yourself, and if you are not in charge in their efforts to help you there may be undesirable outcomes. IE repeat surgeries, repeat removals and then dietary issues to follow because of your reduced GI tract.

As rnff2 has said elsewhere "advocate for yourself" ... now I recognised not everyone is honestly equipped for that (educationally and attitudinaly), so you should consider finding someone who is. If you do not "take the bit between your teeth" then you run the risk of being worse off.

I guess l will hear what they have to say next week but ln all honesty l am good where l am today here in this moment. . No bleeding, no pain, at home just where l wanna be.

I think that you above statement is really as much as you can hope for and a great attitude. To be clear , in my previous post about redo, I am NOT advocating for that, simply putting it out there that it might be a possibility if things do not improve. I would get a strong grip on the figures (such as the regurgitation you mentioned) and trully really grok that ... wring your Cardio for information like a thirsty man wrings a sponge for water. Not blabbering and emotional stuff core hard questions

• can I live with it like this
• what are the implications of that
• will I be able to ...

stuff like that

Best Wishes

 

[harrietW]

Pellicle ..
Always a voice of reason thank you for that and one among many. I appreciate everyone's input as like anything else unless one experiences the whole effect of OHS or living with heart disease and the ramifications of what all of this means is like my friend and family don't get don't really understand it and don't actually feel the physical and emotional stuff that comes with it. Not to say they don't have their own thoughts and feelings and emotional turmoil that comes along with loving someone with heart disease but being the patients and experiencing it first hand is another. So without you guys lm screwed. I need to look at all option and in this moment l am not a medical emergency. . Like l was over the last couple of months. I have the ability now knowing what the problem is to take a step back from the crisis l was in and logicaly and after being educated a bit more on the options and what effect all of this will have on my future both positively and negatively. That's alot to think about. Logically can l continue to live on heparin shots alone or for how much longer. Also taking into account l was bleeding actively internally on and off spontaneously pre surgery for along time. What are the chances of dormancy or reoccurring bleeds .. l eventually have to go back on warfrin and the rest of my meds but how soon ? So many questions so much to think about .. stepping back.
I actually took a few clients this week and am booking next week .. l love what l do and have missed it so darn much and l want to continue to build my business 3 mths is along time to close shop and expect to have anything left when you come back. I wanna stay back .. so any future treatment at this point is not appealing to me. I feel greatt today .. yesterday not so much.
Thx Xx

 

[harrietW]

JulienDu l don't care if you speak you mind. We are all entitled to do that. It's your arrogance that is not becoming l am well aware of the importance of this site and we are discussing my life here on this particular post. You have all but called me stupid and a lier. That my little friend is not ok. I have respected you and your opinions and ask you to stop treating me like l am an idiot. You don't know what l have or haven't done. You can only assume. Like l said l expect some respect. You have know idea what l have done or gone through to educate myself .. so l would appriciate that you don't make judgment on something you know nothing about. That is all.