Greetings From The CICU At HUP Philly

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skeptic49

skeptic49

VR.org Supporter
Supporting Member
Joined
Aug 8, 2008
Messages
3,054
Location
Philadelphia, PA and Cherry Grove, Fire Is. NY
Well, the crap seems to have hit the fan finally. Ten years after being diagnosed with BAV and AS, on Tuesday I had a fairly severe episode of chest pressure and malaise. Went to the ER and I was admitted after bloodwork showed troponin levels. Today I'm waiting for my cath. My echo still shows a mean gradient in the 30s but troponin would signal damage. So if I have s problem caused by cad, that's one thing, but I don't personally think it's that. If OTOH it's valve-related, then it's time for surgery. I'll know more soon. Anyway, season's greetings to everyone from this long time waiting roomer.

Jim Kelly-Evans
 
Hi Jim - Does your signature suggest that your valve area size is 0.8 cm2 ? Am I reading that right ? Because if so that would suggest time for valve replacement in itself I believe. What's your peak pressure gradient ? Best of luck in whatever they say !
 
You're in fine hands at HUP! If you see Travis (best CICU nurse ever), say hi for me! He took care of me six months ago tomorrow. I got out of surgery too late to see him on the big day. Amazing how much better it is in the cardiac ward than the emergency room too, eh?

Looks like if they go in for anything else, they'll fix up your valve while they're at it. Best of luck to you and try to relax. They really will take wonderful care of you.
 
Thanks Anne, Michele.and Mary. Yes Anne, my av opening us in the severe range but gradients are not quite there just yet. But like one of the docs said today, everybody is different and my time may have come. Michele, the CICU at HUP is really nice, I agree. Mary, how nice to re- connect...missed you. I'll be sure to report back after my cath tomorrow.

Love and hugs,
Jim
 
Jim,
I wasn't expecting a 'drop in' visit from you to the forum from the CICU! However, I am glad that you are in good hands and being looked after. Thinking of you and do keep us posted. :) We will be here for you.
 
Remember when you took your car in for one repair, and they tell you, oh, by the way, this is broken and that doesn't work, etc., etc?

So I wait all day today, Friday for the heart catheterization, they prep me, take me down to the cath lab and....STOP. Because the brain MRI yesterday showed that I have suffered multiple minor strokes (!!!!) to be safe we need take a closer look at your heart valves to make sure there's nothing that can dislodge during the cath and cause a serious stroke. So they order a TEE... ugh they ask me questions about my esophagus...no problem until the question about swallowing...any problems? Well, I've had swallowing problems for years caused by who knows what, maybe my dilated ascending aorta? Anyway, that put everything on hold. No TEE, No cath...instead I had to go down to radiology and swallow a half gallon of barium while they x-rayed my esophagus! The other tests are on hold until Monday, MONDAY! So I' m stuck here all weekend with the prospect of the nasty TEE to look forward to before I can even get to the cath. Who knows when I'll ever get outta here!

Thanks friends for reading all this and for your support.

I'm starting day 4 now in the CICU...the absolute earliest I can see getting out is next Tuesday and that is only if nothing else goes wrong. Who knows what meds I'll have to go on but Coumadin looks for sure.


well, I had a good run...I turn 66 in January previously on nothing but a daily aspirin. Those days are gone.
Best to all,
Jim
 
Oh dear - what a palarver Jim. Pity they couldn't do a CT angiogram as that would have got round those other issuues and they can see calcification on the valves with CT (they did CT angiogram with me as it's "safer" than heart cathetierization) - but you are in their hands and in the best place at the moment. Wishing you the best.
 
Not the kind of 'surprises' you need, Jim. I hope that everything gets sorted out for you and as the others have said, you are at the right place in the right hands.

Paleogirl made a good suggestion re: CT angio (which I also had). Perhaps, you would be eligible for a cardiac MRI? However, I am not sure if this test would give them everything they are looking for.

Sending my most positive thoughts to you!
 
This morning one of my cardiologists, a resident named "Mike" came in early to fill me in on the planned course of action for the coming week. Since the films from last weeks barium esophageal X-Ray series were negative for any TEE contraindications, I will have the TEE first on Monday. If the TEE does not reveal any contraindications for a heart catheterization, then that will happen second, either on Monday or Tuesday. Then there will be a pause of two days to allow contrast media to clear my system. Next, probably on either Thursday or Friday I will have a full chest contrast CT scan. One of the purposes of this is determine what the surgical options are for AVR. It may be possible for me to have a TAVR procedure but this is yet to be determined. HUP does the most TAVR procedures in the Philadelphia area and they are making the procedure available to populations other than the initial limited elderly and ill who are not candidates for OHS. I don't think the CT-Angio is an option because they want the option to stent any coronary artery blockages they find. I don't think I have CAD but they have to check for it. I am excited about the very possibility of TAVR but the pieces have to fall into place for that to happen including not having any additional dilation in my ascending aorta. This is turning out to be one hell of an adventure.

Update: I am NOT eligible for TAVR...it has not been approved for bicuspid valves, and it is not being done here as widely as the resident led me to believe. Nothing like getting your hopes up and then having them dashed within a few short hours.
 
Last edited:
skeptic49;n850455 said:
Update: I am NOT eligible for TAVR...it has not been approved for bicuspid valves, and it is not being done here as widely as the resident led me to believe. Nothing like getting your hopes up and then having them dashed within a few short hours.
Click to expand...

Jim,
Well now you know and you can put TAVR to rest for now. Good luck with your procedure tomorrow and hope everything goes well. Although OHS doesn't sound like a picnic, it is doable and we have all been there. :)
Thinking of you and sending my best wishes,
 
Hi Jim - best wishes for today ! I must say when I read your post before your update in which you had said there was an option to do TAVR I was rather shocked as they had said you were having multipe minor strokes and TAVR has a stroke mortality complication rate that is relatively high in itself ! Plus there are no long term follow ups on it being done in people who are younger (than around 80) as it's not been around for very long. In some years' time TAVR will doubtless be perfected but for now it's really only for those for whom OHS is too great a risk.

As ottagal says, OHS is doable and we have all been there !
 
Anne:

Yes, I was shocked when cardio resident put TAVR on the table...he should not have done that. Today will be extremely challenging because I am absolutely dreading the TEE...I am a mouth breather due to chronic nasal congestion and I'm worried that I won't be able to breathe with the apparatus in my mouth. I'm scheduled for the TEE at noon and MAYBE the cath afterward...hellish day.

Thanks for your support.

Jim
 
Hi Jim - I don't envy you the TEE. Once a gastro doc wanted me to have an endoscopy and I refused because of my dread of gagging. I know the TEE must be similar to an endoscopy - do let them know of your fears and they will help as it will obviously be easier for them if you are relaxed.

Will be thinking of you !
 
I had both the TEE and the cardiac cath this afternoon. The staff here at the Hospital of the University of Pennsylvania is so expert that I got through everything easily with no discomfort or pain, contrary to my fears. Like Anne, I had a great fear of gagging, choking and not being able to breathe with the TEE endoscope down my throat. I made my fears known to the team and I was assured that the sedation would be ample. It was. The last thing I remember was opening my mouth for the bite guard. I was not awake for the introduction of the scope and when I came to the scope had already been removed. I felt nothing, I had no discomfort, I have absolutely no throat soreness, it's just as if I never had the TEE. After the TEE I went directly to the cath lab, The great team there is also using the most up-to-date techniques. Even though I was prepped for a groin entry as a backup site, the physician used my wrist. This worked great and cut recovery time down to a fraction of what it would have been. Plus, I didn't have to lie still and flat for hours in recovery.

While I do not have most of the results of the tests, I did find out that I do not have coronary artery disease validating my own prediction. Tomorrow I'll meet with my doctors and hopefully get the full test results as well as find out what the plan is to address my stenotic bicuspid heart valve, and mini-stroke/heart attack that I experienced last week. I believe that the cause of the event last week was the bav. I think my heart is oxygen starved at times due to the stenosis and that the valve is throwing off calcium embolisms that are making it into my brain and causing small strokes. But my "numbers" are not quite in the severe range yet, The valve opening is at 0.8 cm2, but the mean gradient is still in the mid to high 30s. So I'll see what they plan to do,.
 
Hey Jim,

I have been reading your posts, and I am routing for you in your effort to get your BAV fixed or going back to the very careful position of watching and waiting. You have been through a lot this week. I am sorry. Hang tight and be strong. All of us here, whether having the surgery experience or waiting for it, we are here for you.
 
mbeard;n850484 said:
Hey Jim,

I have been reading your posts, and I am routing for you in your effort to get your BAV fixed or going back to the very careful position of watching and waiting. You have been through a lot this week. I am sorry. Hang tight and be strong. All of us here, whether having the surgery experience or waiting for it, we are here for you.
Click to expand...

Thank you very much. I guess we all have our time to deal with this and mine has come...if I can get the docs to agree. I don't want to go back to the waiting room. I had heart damage last week. It's time.

Jim
 
Jim, I suffered several TIA episodes due to clots being thrown from my valve prior to my valve replacement. Your theory sounds correct to me. Best wishes going forward, and yes, we're here for you.
 
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