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Denisefh

Sinus Node not working.

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I know I shouldn't have done it, but I got a copy of the results from the King of Hearts that I just wore for the month of April. My appointment with my EP Cardio isn't until August and I wanted to know what the report said was going on. They had ordered the test after onset of new symptoms (plus repeat of old symptoms I hadn't had for almost a year).

The nurse called me after the first week I had the monitor and we went over medications, but I hadn't heard anything since then.

Well, I don't really understand all of it, but I had 56 episodes and almost all were due to Junctional (AV) rhythm. I was diagnosed last year with Sick Sinus Syndrome, so my Sinus Node hardly works.

The test showed episodes of Atrial Fibrillation, but mostly whacked out rhythms and tachycardias due to the junctional rhythm.

Once, when I had taken my grandson to school and was walking back to my car...fast and uphill...it seemed like my heart didn't keep up with me and I was short of breath. I recorded it on the monitor just to see what my heart was doing...and my top rate was 75!!! That is okay for watching TV, lol, but not for exercising. No wonder I felt sluggish.

I hate to rant, and hopefully my EP will have something good to say, but I think I'm getting closer to that point in time where something is going to have to happen. I'm getting symptoms now with some of these goofy rhythms, and some are downright scary.

They wanted to put in a pacemaker last year to take over for the Sinus Node after my ablation, but they say the surgery is too dangerous. I have clotting problems because of a blood condition and my blood thinner has no antidote and is long acting...therefore huge chance of bleeding. I have thrown enough embolisms that they don't want me going even a few hours without the thinner...so I'm caught in a no win situation.

To top it off I just found out that the Amiodarone I'm on can cause Pulmonary Fibrosis, which my ex-husband is now in the end stages of. They are giving me Pulmonary Function Tests every 6 months, but I didn't know it was because they were checking for something that was fatal!

Thanks for the vent, I wish some part of me was working right, lol, but I can't think of a one right now.

Denise

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Da__it, Denise! This will not do at all!! I need time to absorb this and then we shall all help you fight it, OK? NOTHING takes our Denisefh out of commission for very long and we shall all go out in protest if we need to!! Poor Bob!....what does that all mean?? And keep in mind that 'end-stage' COPD and pulmonary dysfunction can last decades..... Bob's smiles will keep it at bay, I am convinced of it!!

 

jan

 

PS Vent all you want....I hate scary stuff but find that facing it and kicking it to the curb works best for me....:)

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Thanks, Jan. At least my last PFT didn't show much change, so I'm hoping that I'll be able to avoid the lung side effects of the Amiodarone. They did warn me NOT to look up that med, because then I'd be too afraid to take it.

I really shouldn't have looked it up, but a couple of weeks ago when I was at the Rheumatologist there was a resident there who was very interested that I had to be on Amiodarone. She said "you must really have major heart problems because that is usually a last ditch medication because it's so dangerous - it has a lot of side effects and they're all very bad". Of course, I then HAD to look it up - for the first time basically since I started taking it a year or two ago.

I'm hoping that if the PFTs start to show changes, that it would be early enough that they can keep things from progressing to the stage that my ex has it (he's on oxygen).

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What a putz....'you must really have major heart problems because that is usually a last ditch medication because it's so dangerous - it has a lot of side effects and they're all very bad". I do not know what the value was in telling you that. Obviously your prescribing doc knows what he/she is doing. tisk tisk tisk.... So are you now glad you know?

 

You seem so incredibly aware of what is going on within you Denise and I know you started down this road so very many years ago. I wish I had some great knowledge to impart upon you. Given that you now know about your results and have reason to be concerned. Is there a possibility to getting in to this doc sooner or get on a waiting/cancellation list? Do you live far from this doc? Where I work we put folks on a list if they promise they can get in in short notice.

 

I am on your team Denise. Keep venting here. We are listening.

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Jan, I just reread your post...and I hope I didn't mislead about the end stage Pulmonary Fibrosis. Bob doesn't have it, thank heavens, it's my EX husband (David) that does. They think it's from his profession - autobody instructor - but I think his long time smoking had a lot to do with it.

 

Shaka, lol the answer is NO, I am not glad I know. There is a lot to be said about ignorance sometimes. The prescribing cardiologist (head of the department) specifically told me not to look it up because I then wouldn't want to take it. I did sorta glance once, but didn't really study it.

I live within 15 minutes of UW, but there is no urgency now because I'm not passing out yet which they said would be the criteria for them doing intervention. My EP basically said there's nothing they can/want to do now, because of all the risks. I'm in a holding pattern so to speak.

Denise

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Oh, thank goodness, Denise, I did misunderstand. Bob has enough on his own plate and I am glad he has not added that to his list. On my soap opera, they are always calling for amiodarone for cardiac problems. And yes, Shaka, I agree---that putz who was so indiscreet as to share all that with a patient should be shaken up a little...Anyone game to take her on...:)?

 

jan

 

PS Of course, we could all just accept that we are fatally ill and are going to die...SOMETIME!! That is a long way ahead, depending on how you spend the 'nows'.

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Oh my Denise, I'm so sorry your going through this! Its an awful feeling when the heart rhythm is out of whack! And never, never feel bad about venting here! That is why we are here! Good grief, how dumb for that doctor to make the comment he did about that med! I'm with you, I would rather not know the danger knowing I had no choice but to keep on taking it. But I guess we forget to think about the danger of NOT taking some of these meds with their bad side effects.

 

You are definately in my prayers, Dear Lady! :wub: Hugs, Pat

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Thanks, all.

Shaka, being in a waiting pattern feels a lot like having a bull's eye painted on your chest. It's a feeling we all can relate to, unfortunately. :action-smiley-077:

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Wow Denise that is a mouthful of cardioese!! Are you in an area where there are not many cardio's?!?!?! My cardio would be seeing me monthly with all the various issues. I am 5 minutes away now from my cardio and hospital so that is not a concern. And like they had to tell you if you start blacking out that you need to call them or hit the ER????!!! Sheeesh!

 

I am so very sorry you are in this deep with the cardio goo!! You are in my prayers and heartfelt concern!!! :heart-pip::excl:

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Chaz, I'm in Seattle so I go to University of Washington Medical Center...where some of the best Cardiologists in the country are. Also, I'm only about 15 minutes drive from them.

 

Thing is, they don't want to do anything until I start having really bad symptoms because it's too dangerous to put in a pacemaker so they want to wait until there's really no choice.

 

If I go into protracted tachy or fibrillation, I take a Diltiazem every 6 hours and only go into ER if it doesn't go away after 24 hours. So far, since early 2007, I've been lucky and my heart converted at home after only a few hours after the Diltiazem.

 

I have both an EP Cardiologist and a regular Cardiologist...and have advanced (or regressed) to where I only have to see them once a year mainly because there's not much they can do. I only need to see them more often when things act up (like they have been recently). I guess two operations on the inside of a person's heart (ventricular and then atrial) really messes up the electrical conduction system with all the scarring.

 

In retrospect, holding patterns aren't too bad...much better than things getting worse.

 

Take care yourself, I hope you are doing okay and I keep you in my prayers.

Denise

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That's right I forgot you live in beauuutiful Seattle! My cardio in fact trained and did research up there. He was part of the team that discovered the value of niacin for the heart.

 

Well I am not too well versed in heart failure issues so I didn't realize you had a specific med for that. However throwing embolisms is not a small matter young lady!

 

I have a close friend who has CHF and one hospitalization the nurse read incorrectly the dosage of coumadin he was supposed to get. He almost died! But his doc put him on a very new drug and his EF went up to 66!!! His doc said no one has ever had that much of a change. He does have a pacemaker now and can for the most part go about his normal activities.

 

Sure wish I could return to normal activities- but I am on the list of those they don't know what further to do for since my left side is either completely blocked or already stented and not repairable But I grow adhesions extremely fast. One stented artery went in March from completely clear to fully blocked! The cardio said he had never seen that before. But I have been a part of that club all my life- the "I Have Never Seen that Before!"!!

 

It does feel good to be near some of the best heart docs in the world-ey?! Our docs cover all of Utah so they take rotations having offices in 4 or 5 locations. Southern Utah is VERY rural except for St. George which is only about an hour away from Las Vegas. It is a large retirement area which I am considering moving to to get away from the cold, get a much lower elevation and far enough away from all the family crap my wife still generates.

 

Well thank you for the explanation now I can sleep peacefully ......but I think I will still pray for you anyway! :)

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LOL I know what you mean by the "I Have Never Seen that Before!" club, I'm in it too...over many issues, not just cardiac. It is especially awful to hear that at a place like UW where they see so much of everything!

 

I'm glad that you are able to have cardiologists on a rotation basis, much better than some of the rural areas where I used to live. Actually the UW was one of the big reasons we moved to Seattle (with the kids and grandkids, of course, being an even bigger reason).

 

Sounds like a move might do you a world of good. I can't imagine living in the same city as my ex (with my luck, though, he'll move to Seattle since he's now not working anymore because of his lung disease).

 

I hope you slept well,

Denise

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