Cardio appointment; I'm rattled

[Mary]

I don't even know why I'm posting this, except I do know why, if that makes any sense. Logically I know there's nothing different going on than what's been going on, but I'm rattled and need to vent (I guess)

I saw the cardiologist today; my AVR was last June 7. He quizzed me pretty hard about the amount of fluid retention I am having but seemed satisfied with my answers. He did ask me if I thought we needed to up the Lasix again, but I declined. Then he launched into the, "with your history, what I'm worried most about is the pericardial constriction and staying on top of any more fluid retention that might develop." And then he threw in, "unfortunately, as you know, the surgery to relieve the constriction is more serious than the original valve replacement."

Now I know all this, but I suppose I've grown accustomed to dealing with and downplaying it. His words seemed to be a cautious reminder that I have issues, and he expects them to worsen over time. (Boy, rereading this, I am whining! Oh well! )

I then asked if he were going to schedule my echo, and he said he didn't see the need. In his opinion, the constriction is the primary problem and even if my mitral is leaking (which the echo indicated last August) it would take a backseat to the constriction. When I asked him when I would need an echo, he said if I were concerned, he would go ahead and schedule one. I said I was, so I will have one run next Monday. In the meantime, I have an appointment with him in six months. I don't think that's a good sign, but maybe I'm wrong?

Ok, I'm through.
Thank you to those who read this.
But please, no offers of cheese to go with my "whine"; it's got too much sodium for me to indulge!

 

[Harrybaby666]

Oh My Heavens Mary....

Oh My Heavens Mary....

I just saw this and want to say that I am wondering why one minute he is telling you that you have problems that will worsen, but then he tells you he doesn't see any need for another echo...it seems to me that your running into the same thing I have been with my Cardio(s)...they don't want to do anything until the last minute (of course I don't like this kind of thinking)...and then I am wondering, is there any other test for the pericardial constriction besides the echo that the dr can do? Please know that I am thinking about you and your in my prayers and I am sending tons of ((((((((((Hugs))))))))) to you....Harrybaby

 

[Nancy]

Get Heluva Good Low Sodium Cheddar Cheese, and you can have all you want.

Perhaps you could ask him if it would be OK to up your diuretic and K-Dur if needed, when you noticed pitting edema or shortness of breath. That would keep you both happy. I'm sure you know that if it's in your feet or ankles, it's also other places.

We have done that for Joe with doctor's approval. It's a limited thing just until the fluid gets gone. That way you don't risk getting ascites and then your diuretics won't work so well, and you will need to go to the hospital for IV Lasix.

If you can nip it in the bud with pill diuretics, then that might be the way to go.

 

[Kathleen]

Lasix

Lasix

I remember quite clearly before my pericardectomy for constrictive pericarditis nine years ago my cardiologist upping my Lasix to 2-40mg tablets twice per day and him stating we have to keep you as dry as possible. Odd that that phrase has stayed in my mind all these years. What dose are you on and how much more did he want to bump it. The potassium loss was aided for me by also adding Aldactone and perhaps just adding that and not bumping the Lasix would help.
Kathleen

 

[Mary]

Harry,
My pericardial constriction was diagnosed back in August via an echo, but that's not the only way to determine it. I also have a "septal knock" and my jugular veins are more prominent due to the fluid retention. Once the constriction occurs, you don't lose it. I think that's what he was attempting to say.
Nancy,
I have bought the Helluva Good low sodium cheddar, and you're right! I can have it along with my whine! Thanks for reminding me!
Kathleen,
I'm on 40 mgs daily, but he said I can up it another 40mgs in the pm if the fluid retention becomes a problem. I have done that previously when I realize I'm coughing and probably flirting with ascites. I'm also taking a potassium supplement to guard against its depletion. Knowing that this is going to be an ongoing, chronic problem, I'm trying to keep the diuretic dosage low.
The "come back in six months" is what's bothering me. I thought he would say come back in a year. I feel like I'm doing a good job of holding it at bay, but he shook my confidence a little.
I'll get back on track in a little bit.

 

[Superbob]

Mary,

First of all, you should feel free to "whine" (vent), with or without the Helluva low-sodium cheese (which sounds mighty good, BTW, think I will have to get me some). I certainly have done more than my share of whining.

My only observation is that many doctors somehow feel the need to scare the bejabbers out of us, whether there's any imminent threat or not. Maybe they're just covering themselves. My daughter-in-law gave birth to our first grandson last month and a week before the doc had been telling her she might have "life-threatening" bleeding after the delivery. She and baby did fine.

I wouldn't be too concerned about the six months' appointment. Sounds like he's just being cautious. Maybe despite his penchant for scary talk, he's a good cardio?

Take care, and enjoy those St. Louis Redbirds. Sure hope they beat the Mets tonight.

Cheers,

Bob

 

[Phyllis]

"I don't think that's a good sign, but maybe I'm wrong?"

Mary,
I think you should take that as a "good" sign - you have a good cardio that is just watching you very carefully- much better than one who shrugs it off and waits for you to complain of symptoms.
Our best wishes that you can control this with meds. Put your feet up and have some wine and cheese- you deserve a treat!

 

[Granbonny]

Mary, Girlfriend

Mary, Girlfriend

I was not going to type much (letting my hand rest...for the drive to Wisconsin tomorrow) but, I just wanted to say..Not to worry about the 6 month thing..I saw my Cardio every 6 months until this year. he let me go for a year this past visit..and said, as he walked out. Be sure and get an echo first.I had an echo every year.I'm 4 years out, now.....I know nothing about a pericardial constriction but, I bet many who know about it will chime in....Whine away..that is what we are here for Bonnie

 

[Karlynn]

If you're at all like me, going in to see the cardio is just a big gigantic flashing sign that says "You aren't perfectly normal and you must be watched!" 354 days out of the year I can walk around blissfully ignoring the fact that my heart isn't as perfect as I'd like it to be even with daily medication reminders. The 2 trips to the cardio each year brings me back down to earth. Even when I don't hear anything new, it really puts me in the slumps for a bit.

You like to stay positive Mary, so even repeated not-so-good news interrupts that. Whine a little, some of that no-salt cheese Nancy suggested, maybe a few no sodium crackers - and then back into the light you go sister.

 

[geebee]

Whine away dear - it's one right we should hold on to. I am sure you will get past this and forget it about for awhile. You have a cardio who pays attention to what needs to be watched so you are actually luckier than some people.
Please take care.

 

[Johnny Stephens]

At my first post-surgical consult with my surgeon and his staff, my wife asked one staff member to give me an idea what had happened to me. I was still foggy enough that I didn't grasp the seriousness of the events (suffice it to say it was really bad, with 8 days on the vent). This person started out with "Well, lets see....you tried to die...." . I guess she thought it was funny, but it just about killed me to hear that.

Weird part is, she wound up being one of my greatest advocates.

 

[Ross]

At my first post-surgical consult with my surgeon and his staff, my wife asked one staff member to give me an idea what had happened to me. I was still foggy enough that I didn't grasp the seriousness of the events (suffice it to say it was really bad, with 8 days on the vent). This person started out with "Well, lets see....you tried to die...." . I guess she thought it was funny, but it just about killed me to hear that.

Weird part is, she wound up being one of my greatest advocates.

Really, why do they do that. Mine came in and said you tried really hard to die on us, in fact you went out of the way a couple times. Your a miracle. I looked at them and said, don't get me wrong, I appreciate life, but I'm a bit tired of this miracle thing!

I mean sheesh, here you are, all emotionally screwed up and they tell you stuff like this?

 

[Marguerite53]

Well, Mary..... Ross and Johnny's experience make your cardio sound much nicer!! I'm still reeling about my echo tech saying that my pre-op heart was in good shape -- for an 85 year old! Hope I get him next time.....you guys will have to help me come up with a good one-liner.

Mary. You know we are always here (as you are, for us) anytime you need to vent or explain, or ask questions. I wish I had some answers for you, but I don't.

I'm glad you are going to have the echo. It is important for you to have those measurements to guide you.

Best of luck and please keep us posted.

Marguerite

 

[Praline]

I will be thinking about you and I am sending positive thoughts your way.

 

[Wise]

Mary, sorry about your frustrating cardio visit. I wish you all the best and our prayers are with you.

Wise

 

[gijanet]

Harry,
My jugular veins are more prominent

Oh, you just have to go and make things easier for Ross, don't you?

Seriously, vent and whine away......a Helluva good cheese for a helluva a good whine.........God knows you have listened to and held my hand through enough of mine..........and thousands of others' on here. I just wish I had some answers for you. I do know that 6 month visits is not a bad thing. Ditto on the others' opinions that you just have a conscientious card who is monitoring you closely. If it makes you feel any better, Katie has been going in monthly..........yep, monthly! We just graduated at our last PC appointment May third to quarterly visits, so we don't go back until August. Yippeee!!!! I hear our insurance company singing "Hallelujah!" in the background - or is that my checkbook?! Oh, and Katie was on thirty milligrams of lasix up until a couple of months ago, so me thinks the lady doth protest too much at an increase! dunno if I would up it by 40 more, though, and certainly not at bedtime..........you'll be up peeing all night..........and not from the wine. Sending you lots of love and hugs and prayers that this all resolves somehow. Love ya. J.

 

[hensylee]

well, dang it all. We are all concerned about you and hope they can get this under control. We don't want you having a worse treatment. Listen to Nancy - she knows. Blessins...

 

[Mary]

Ok,
I'm over it.
I guess I had hoped/secretly believed that the August diagnosis was wrong, or that I had been doing such a great job fighting it, that it had just magically gone away.
I wasn't rattled as much as I was delusional!!!
So I've left lala land and got my feet back on solid ground.
Thanks for listening to me vent.

 

[Superbob]

Welcome back, Mary. And the Cardinals beat the Mets 1-0 last night. All is right with the world!

 

[bvdr]

Ok,
I'm over it.
I guess I had hoped/secretly believed that the August diagnosis was wrong, or that I had been doing such a great job fighting it, that it had just magically gone away.
I wasn't rattled as much as I was delusional!!!
So I've left lala land and got my feet back on solid ground.
Thanks for listening to me vent.

Mary, I think I understand what you are going through. It is a little discomforting to be where part of you understands why the cardio wants you to come back in 6 months, knowing you really aren't feeling top notch, and wanting to have this all behind you.

I might have to go back and read your old posts to remind me of your heart history and how you ended up with pericardial constriction. What I'm thinking right now is that even if it eventually requires another surgery at least it is fixable and you might end up in better shape then you are now. My sister recently worked with a young man in his 20s that had OHS with complications including pericardial constriction and required a second surgery months later. She wasn't sure of all the details but I surmised he had a pretty rough time of it, especially with mentally dealing with that he was not fixed with the first surgery. The 2nd surgery however made a world of difference and he is in the process of getting hold of living one more time.

I hope all goes well for you and that one day this will be behind you. You can whine anytime you like because I really do understand your frustration. I sometimes find myself in that place and it takes me a few days to refocus on all the good things that I have been blessed with and get things back in perspective. Hugs to you.