It Just Got Real

[DL1017]

How quickly things can change! Went to meet the docs at Penn today. No-go on the TAVR. He says I have "complex issues" with the aortic wrap and the coronary arteries are to close to where the TAVR would open/close. I can't remember it all. So, I'm scheduled for OHS on 5/24. probably not minimally invasive either. I'm scheduled for a cath next Wednesday. it's been 12 years since my last, I can't remember the recovery from that. We are supposed to go to an airshow about an hour away on Saturday. My husband has been looking forward to this for so long. Do you think I'll be OK to go? It will be a lot of walking. I'm thinking no.
I feel good about going to this doctor and am glad I don't have to wait till mid June.

 

[Seaton]

Quick indeed, Donna! You’ll be done before me, it seems.

I’ve still no scheduled cath as yet and have been told AVR surgery may be a few extra weeks after what I was initially told – I was told within eight weeks. Which for me would have been late May or early June. But may be a tad longer now. But of course, as you’ve shown, things can change pretty quickly either way.

I feel it’s good your doctor’s offering a quick schedule. It sounds like it’s something you’d prefer to get done sooner rather than later - full sternotomy or not. Especially considering your increasing symptoms.

As things progress we’ll be sending plenty of warm thoughts your way, for sure.

I feel like my breathing issue is getting worse by the day. The least little thing (taking clothes from the dryer and carrying a 5lb basket does me in!) Walking up the stairs in my house, and I have to sit down.

As for whether to attend the airshow on Saturday, I think only your body can dictate that. But as you’ve said above, you tire easily. And you suggest there will be a lot of walking. Would your husband be willing to go alone?

Whatever you decide, I wish you good physical and mental health as you work up to your cath and surgery dates.

Please keep us posted.

Best to you.

 

[DL1017]

Me again. I'm feeling horrible. Shortness of breath is ridiculous. Cant sleep well. Yesterday I had my dental checkup and planned to go to work after. Came home and slept most of the day. I never call out sick! Last night felt much better and went to a local place where my cousins husband plays guitar. It was very nice. Didnt feel up to having a glass of wine though . I am very anxious about upcoming cath and surgery. I'm not going to the airshow. I can barely walk around the house without shortness of breath.
I'm sorry, random thoughts here. I dont know how I'm gonna get thru 20 more days.
Donna

 

[Duffey]

You’ve got a lot going on, Donna, as you wait. Have you considered asking for a short course of medication to help with the anxiety? Presurgery I didn’t think of meds, but later reading posts from other members who did, I decided that if I had a second replacement, I would. Wishing you all the best. Mary

 

[Duffey]

Well, it seems Thunderbirds are go.

Saw my surgeon today (4th April) at a pre-admission clinic and it’s been decided to go ahead with surgery. In approximately two months’ time - June most probably. I signed the consent form. Eek.

My Waiting Room days are nearly over - some four years or so since first diagnosis of bicuspid valve stenosis.

Although I’m not significantly symptomatic (fatigue mainly, stenosis edged into severe, pressure gradients up), he feels my readings are all going in one direction and that it is probably better to get the valve replaced sooner rather than later so I can get on with the recovery period and the “rest of my life”.

We discussed valve types (mechanical or tissue) but he said there was no rush to decide on preference. He said I can leave the decision up until the day of the operation if I prefer! They will just pull whatever valve type I choose off the shelf on the day.

He mentioned they now implant the Edwards Inspiris Resilia Valve which I would get if going tissue. Although it appears the Inspiris is still in the guinea pig era relatively (still no long term human use data it seems), I suddenly found myself seriously considering tissue as an option for the first time. This despite having thought I’d made up my mind to go mechanical. That sudden change of heart took me by surprise.

I don’t fear the idea of anti coagulants (thanks primarily to this forum), but now that I’ve reached the sublime age of 60, I found myself today thinking maybe tissue wouldn’t be such a critical choice for my age and circumstances (famous last words).

Whichever valve type is chosen, he intends to do a mini sternotomy procedure, unless other issues or complications suggest a full sternotomy.

So there we have it. There was me thinking I was popping in to have a chat with a surgeon about continuing to watch and wait, when a suggestion was proffered to operate.

Today I had eight vials of blood taken, MSRA swabs, EKG, X-Ray and a lengthy consultation with the lead nurse who will be my point of contact for the duration of the coming period and after. I am being booked for a coronary angiogram to check if any coronary arteries are blocked or narrowed. The surgeon checked a previous CT scan I had in 2015 and seemed to think from looking at that that my arteries looked pretty clear. We shall see.

Congratulations! Time to get the show on the road! I speak from personal experience when I say that my life post-AVR is much less stressful than the years leading up to it. I hope that you will find the same holds true for you.

 

[DL1017]

You’ve got a lot going on, Donna, as you wait. Have you considered asking for a short course of medication to help with the anxiety? Presurgery I didn’t think of meds, but later reading posts from other members who did, I decided that if I had a second replacement, I would. Wishing you all the best. Mary

Thanks Mary, I think I will ask for some Ativan to get me thru.

 

[harrietW]

Seaton
Hello Sounds like you have made a decision Congratulations on that and the hopes that everything goes smoothly. I think you made a very wise decision as l know they are sometimes so hard to make.
Bleeds as you know can be exasperating.
The thought of No warfarin would be a dream come true for me. My redo from January was cancelled due to Autoimmunity attack on my body in Oct thru Jan leaving me terribly ill. It has taken months to recover but not fully at this point l went through a beating on my Neuro system every neuralgia you can possibly think of. I don't know what my future holds as far as heart surgery goes but bovine is without a doubt a dream come true for me. As l continue to be blood transfusion depend. Over 130 in 3.5 yrs
Angiodispla s come more often and frequently in the elderly and l'm not even what l would consider elderly 59 tomorrow.
Anyone anytime can start these bleeds ..
I am so happy you have chosen bovine and l wish you nothing but a successful surgery and an even more successful recovery.
God speed they say and gut instincts to make that last minute decision be it conscience or unconscious.
Wishing you all the best and l hope you can now relax and enjoy your lead up time.

 

[Zippylin]

Hi, seems we both will be in surgery in June. I am new here, again. I was a member years ago when I had my BAV replaced in 2006, at 50 years old, with a porcine value and aortic wrap. Things went just swimmingly until a few months ago when I started having shortness of breath issues. It took me a little while to realize exactly what was going on. The symptoms have come on a lot stronger it seems...by the time I get to the top of a flight of stairs, I'm huffing and puffing! Now, I'm 62 and for some naive reason I thought I could get the TAVR approach. I could, if I wanted, but the surgeon doesn't recommend it. Apparently it doesn't last any longer and they can only do it once. Am I understanding this correctly? If I get the TAVR, it might last 12-15 years, I'll be in my mid 70's, and would have to have OHS because they couldn't do the TAVR again. It all seems to be a crap-shoot. Maybe I won't live to be 75, hopefully I will. So, my decision seems to be: another tissue value, or a mechanical value and coumadin (which the doc says has a good chance of lasting the rest of my life. But quickly reading some posts on here, it doesn't sound like that's a definite) Like a lot of people, I'm scared of coumadin. I've already had other medical issues: Breast cancer at age 35 with surgery & chemo; I was found be to type 2 diabetic at the same time I found out I needed my BAV replaced at age 50. I'm already sticking myself to test for my blood sugars, do I feel like doing that for blood thinning too?
I guess I'm not really asking a question, am I. Just wanted to say, I'm in the same boat as you, Seaton, or at least waiting like you. They scheduled me for 6/13 (with the same surgeon as first time around), but I have a 2nd opinion this Tuesday. If I didn't book it, I might have to wait till July because of his vacation.
I'll be curious to see what valve you choose. Right now, I'm leading towards a tissue one again.
Thanks for listening.

Hi, I also just came back to the forum. I am a 72 year young female. In 2013I had my first AVR. I received a tissue valve.
Sorry, I cannot remember which one. The reason for my second surgery in 2017, was not necessarily the valve
But the surgeon screwed up. He did not attach my valve fully and he put in a valve that was too small. It began
To bleed which made the valve in usable.
My surgeon was DR.ALEX KULICK IN BOCA RATON, FLORIDA. HOSPITAL BOCA REGIONAL .DO NOT USE HIM EVER
THIS TIME I SEARCHED FOR TOP SURGEON IN USA. I FOUND DR. CRAIG SMITH IN NEW YORK IN NEW YORK PRESBYTERIAN MEDICAL CENTER IN NEW YORK CITY. We travelled to NYC and had the second operation.
Luckily here I am. The new aortic valve is the EDWARDS PERICARDIAL TISSUE HEART VALVE. MODEL 3300TFX
And I feel that I made the right decision to have the tissue valve again after much research. I felt since I also have Hypertension and Fibromyalgia any little thing would become a problem including the noise from the mechanical valve
So far all is great, and whatever valve you choose make sure you are comfortable with that decision. You don’t want to
Go int the operation unsure, and after saying to yourself “I should have,could have, etc. Be happy with your decision
Good Luck

 

[Paleowoman]

So nice to see you back on the forum Harriet - I always think of you x

My redo from January was cancelled due to Autoimmunity attack on my body in Oct thru Jan leaving me terribly ill. It has taken months to recover but not fully at this point l went through a beating on my Neuro system every neuralgia you can possibly think of. I don't know what my future holds as far as heart surgery goes but.....

 

[dornole]

Me again. I'm feeling horrible. Shortness of breath is ridiculous.
Donna

I'm so sorry to hear this, I remember how much not sleeping sucked when I had mitral stenosis.

Are you sleeping in a chair? It helped me some. I definitely couldn't lie down without hacking and gasping for air. Sleep is so needed, it's rough when you can't get it. Best wishes.

 

[harrietW]

So nice to see you back on the forum Harriet - I always think of you x

Thank you Paleowoman
I come and go depending on where lm at and how thing are going. Alot of changes here in the forum l see.
Hope you are well enough !

 

[Seaton]

Congratulations! Time to get the show on the road! I speak from personal experience when I say that my life post-AVR is much less stressful than the years leading up to it. I hope that you will find the same holds true for you.

Thank you for the comment, @Duffey ... Mary!

Your wisdom on such matters deeply appreciated.

My bags are metaphorically being packed ... prepping for the big day. Having said that, so far all I’ve managed is a pair of new PJs I casually bought the other day. I don’t think I’ve worn pyjamas since I was about 10! At least I’ll look the part.

 

[Seaton]

Me again. I'm feeling horrible. Shortness of breath is ridiculous. Cant sleep well. Yesterday I had my dental checkup and planned to go to work after. Came home and slept most of the day. I never call out sick! Last night felt much better and went to a local place where my cousins husband plays guitar. It was very nice. Didnt feel up to having a glass of wine though . I am very anxious about upcoming cath and surgery. I'm not going to the airshow. I can barely walk around the house without shortness of breath.
I'm sorry, random thoughts here. I dont know how I'm gonna get thru 20 more days.
Donna

Hi Donna ... sorry to hear you’re still not feeling too good and shortness of breath continues to be an issue.

I think skipping the airshow was probably wise, all things considered.

And I hope your anxiety lessens as the days pass. 20 days or so probably seems infinitely long in the build up to surgery, but there’s always plenty of comfort and support here as the day approaches.

I had a dental check-up and clean too last week. All good for me in the teeth and gum department it seems. The cardiology nurse told me recently to make sure my dentist/hygienist did only a light clean, nothing too dentally intense, prior to surgery. Keep those nasty endo bugs out, was the message.

Best to you and warm thoughts.

 

[Seaton]

Seaton
Hello Sounds like you have made a decision Congratulations on that and the hopes that everything goes smoothly. I think you made a very wise decision as l know they are sometimes so hard to make.
Bleeds as you know can be exasperating.
The thought of No warfarin would be a dream come true for me. My redo from January was cancelled due to Autoimmunity attack on my body in Oct thru Jan leaving me terribly ill. It has taken months to recover but not fully at this point l went through a beating on my Neuro system every neuralgia you can possibly think of. I don't know what my future holds as far as heart surgery goes but bovine is without a doubt a dream come true for me. As l continue to be blood transfusion depend. Over 130 in 3.5 yrs
Angiodispla s come more often and frequently in the elderly and l'm not even what l would consider elderly 59 tomorrow.
Anyone anytime can start these bleeds ..
I am so happy you have chosen bovine and l wish you nothing but a successful surgery and an even more successful recovery.
God speed they say and gut instincts to make that last minute decision be it conscience or unconscious.
Wishing you all the best and l hope you can now relax and enjoy your lead up time.

Hello @harrietW ! Fantastic to see you back here. Like Anne @Paleowoman I’d been wondering how things have been for you this past year or so.

Thank you greatly for your generous comment and advice.

Really sorry to hear of your continuing issues. Glad there has been a touch of recovery since January, albeit far from enough from the sound of things.

I confirmed my valve choice with the hospital last week. The Edwards Inspiris Resilia. Something resonated within when this bovine valve was suggested by my surgeon. I was surprised by the ease and decisiveness of my decision considering I was sure I’d already firmly decided on a mechanical. It instinctively felt like the correct choice for me. No strongly held challenge has arisen in my mind regarding this choice since then. So I’m going with the flow and currently at one with the decision I’ve made.

I’m wishing you good and positive decisions on any future surgery and valve choice.

I hope whatever decision you make better health comes your way very soon.

Warmest and best to you.

 

[Seaton]

Hi, I also just came back to the forum. I am a 72 year young female. In 2013I had my first AVR. I received a tissue valve.
Sorry, I cannot remember which one. The reason for my second surgery in 2017, was not necessarily the valve
But the surgeon screwed up. He did not attach my valve fully and he put in a valve that was too small. It began
To bleed which made the valve in usable.
My surgeon was DR.ALEX KULICK IN BOCA RATON, FLORIDA. HOSPITAL BOCA REGIONAL .DO NOT USE HIM EVER
THIS TIME I SEARCHED FOR TOP SURGEON IN USA. I FOUND DR. CRAIG SMITH IN NEW YORK IN NEW YORK PRESBYTERIAN MEDICAL CENTER IN NEW YORK CITY. We travelled to NYC and had the second operation.
Luckily here I am. The new aortic valve is the EDWARDS PERICARDIAL TISSUE HEART VALVE. MODEL 3300TFX
And I feel that I made the right decision to have the tissue valve again after much research. I felt since I also have Hypertension and Fibromyalgia any little thing would become a problem including the noise from the mechanical valve
So far all is great, and whatever valve you choose make sure you are comfortable with that decision. You don’t want to
Go int the operation unsure, and after saying to yourself “I should have,could have, etc. Be happy with your decision
Good Luck

Greetings @Zippylin ... good to have you back on here with your wise words and advice.

Sorry to hear about your initial valve issue but glad things have settled and going well with the new Edwards Pericardial. Here’s to a continuing strong performance from your new valve and the best for future health

I feel fortunately settled and calm in my head re my valve choice and will take things as they come from here on in So ... No regrets, as The Little Sparrow would say! Onwards ...

Big thanks for your input.

 

[DL1017]

Hi Donna ... sorry to hear you’re still not feeling too good and shortness of breath continues to be an issue.

I think skipping the airshow was probably wise, all things considered.

And I hope your anxiety lessens as the days pass. 20 days or so probably seems infinitely long in the build up to surgery, but there’s always plenty of comfort and support here as the day approaches.

I had a dental check-up and clean too last week. All good for me in the teeth and gum department it seems. The cardiology nurse told me recently to make sure my dentist/hygienist did only a light clean, nothing too dentally intense, prior to surgery. Keep those nasty endo bugs out, was the message.

Best to you and warm thoughts.

I'm not sure how to quote...anyhow 20days does seem like forever. But today I had an amazing thing happen. At church I was talking to our new-ish deacon. So I dont know him that well. I told him what was going on, turns out he is a cardiologist and knows my surgeon quite well! Said I'm in good hands. Then I visited an older gentleman who I knew had TAVR back in December but I didnt know where or by whom. Turns out it was at HUP by my surgeon! He couldnt say enough about him. How weird is that? We live about an hour from the hospital and there are lots of choices in the Philadelphia area. So pretty remarkable that I run into 2 people in one day that know him! I admit, i feel a little bit better!

 

[Paleowoman]

My bags are metaphorically being packed ... prepping for the big day. Having said that, so far all I’ve managed is a pair of new PJs I casually bought the other day. I don’t think I’ve worn pyjamas since I was about 10! At least I’ll look the part.

@Seaton - Oh, do buy some comfy day wear as they'll have you out of your PJs during the day the day after you get out of HDU - in HDU and ICU you'll be in a hospital gown. You should only be in your PJs at night so do buy a pair of comfy track suit trousers with a bit of give as you put on weight immediately post op due to fluids you retain - and a top/shirt that does up with buttons, not one you have to put on over your head. And a nice pair of slippers for walking up and down the hospital corridor as they'll have you walking once you're back on the ward. I had never worn slippers since childhood until AVR, and I haven't worn them again since I got home !

 

[Seaton]

@Seaton - Oh, do buy some comfy day wear as they'll have you out of your PJs during the day the day after you get out of HDU - in HDU and ICU you'll be in a hospital gown. You should only be in your PJs at night so do buy a pair of comfy track suit trousers with a bit of give as you put on weight immediately post op due to fluids you retain - and a top/shirt that does up with buttons, not one you have to put on over your head. And a nice pair of slippers for walking up and down the hospital corridor as they'll have you walking once you're back on the ward. I had never worn slippers since childhood until AVR, and I haven't worn them again since I got home !

Aha!
Brilliant advice, Anne. Gratefully received

I did glance at some slippers the other day and thought, maybe I should. I think now I will!

And tracky bottoms and buttoned top for daytime and ward walks. Now on my list. Will source them this week hopefully. Add to my ‘overnight’ bag. Any other suggestions, please fire away!

I had never worn slippers since childhood until AVR, and I haven't worn them again since I got home !

Hahaha.

 

[Gordo60]

I confirmed my valve choice with the hospital last week. The Edwards Inspiris Resilia. Something resonated within when this bovine valve was suggested by my surgeon. I was surprised by the ease and decisiveness of my decision considering I was sure I’d already firmly decided on a mechanical. It instinctively felt like the correct choice for me. No strongly held challenge has arisen in my mind regarding this choice since then. So I’m going with the flow and currently at one with the decision I’ve made.

Very interested in this valve myself when the time comes for surgery. Around age 60 has been a grey area in choosing between tissue vs mechanical valve. However if the life of this valve does prove true then it may possibly last a 60 year old to the end of their days. If not then hopefully at least last long enough so that by then less invasive procedures / technology have advanced considerably.

Interesting if one does however for whatever reason need another OHS. My cardiologist told me that sometimes there’s an element of luck involved. The week before my consult two of his patients were operated on for valve / aneurysm by the same surgeon. One a very fit and healthy 38 year old male. The other a frail and weak 92 year old male with medical history records thicker than War & Peace novel. The 92 year came through with flying colours. The other younger healthy patient suffered all sorts of complications and nearly died.

 

[Paleowoman]

Add to my ‘overnight’ bag. Any other suggestions, please fire away!

There was a very good thread some time back in which people listed what they had found useful to pack @Seaton I remember one very useful item was 'wipes' - just to keep yourself fresh and clean easily !