Can anyone share experiences? or offer advice?

[LisaK]

Hi there,
I'm 29 and had my aortic valve replaced in MAY 2009. It's been a journey for me, I also have the condition Takayasu's arteritis which is a form of vasculitis. I'm nearly 2 years on and I still find the "clicking" difficult to cope with. I take pills to sleep at night.

Two days ago I had a stressful incident and found after my heart felt like a train track, it was beating so fast. I have experienced this before but the difference was this time it was a wierd rhythm. It felt like it was just random. It lasted for about 10 mins then returned to normal. Last night I was just taking my evening medication when it happened again, my heart started racing and then like quivering. It felt like wierd fluttering under my left breast. I was really scared and still feel quite anxious now. I feel like I'm sitting here waiting for it too happen again.

Has anyone ever had this? I wasn't sure if I should have gone to the hosp but by the time I got there it would have stopped?

Any advice would be greatly appreciated.

Hope everyone is well,

Lisa x

 

[Lynlw]

Have you called your cardioologist? If not I would. Maybe they will give you a holter or event monitor to wear to try and see what is happening or at least tell you what they want you to do IF it happens again.

I'm sorry you are still having some problems w/ the clicking, I don't know it it would help you to sleep, but have you tried sleeping with the tv or radio on, or one of those white noise type of machines?

I hope beside that you are doing well.

 

[normofthenorth]

The most common forms of post-op arrhythmia are Atrial Fibrillation and Atrial Flutter, usu. known here as A-Fib and A-flutter. Unfortunately, they're VERY common, at least for brief periods. They usually respond to drugs (often Beta-blockers), and often go away after a while. Without Beta-Blockers or similar meds, A-fib can cause tachycardia, fast but disorganized heart racing, which is bad for you in a number of ways.

I took a trip to the ER by ambulance because of A-fib, but that was 3 weeks post-op, not 2 years.

Do get it checked out.

 

[njean]

Make an appointment with your cardiologist. If it turns out to be nothing, well fine but for your own peace of mind, get checked out!

 

[Bina]

Lisa, it would be most helpful to have a doc or cardiologist catch your episodes on an EKG or holter monitor so that
the appropriate meds/treatment can be prescribed.

A-Fib---a very fast irregular heart rate which usually needs Coumadin/warfarin meds to prevent clots.
A-Flutter---a less dangerous somewhat slower form of A-Fib.
VT----ventricular tachycardia; fast and regular originating in the ventricle, needs treatment.
SVT---supraventricular tachycardia; fast and regular HR originating in the atria, this is the least dangerous arrhythmia.

It is indeed very scary when our Heart acts up, but it helps alot to avoid or regulate triggering factors:
Caffeine...Chocolate...Stress....Fatigue....BP meds....are some factors.
Call your doctor, please.

 

[drivetopless]

I'm 5 weeks post op and dealing with afib/aflutter too. Sounds a lot like what you are describing. Definitely call the cardio. THey can put a holter monitor on you and catch it on EKG. Is it happening every day or becoming more frequent?

 

[LisaK]

Thanks for your replies, I've been to my cardiologist with racing heart beats before and he did some 24 hour monitors but it never happened They say it's down to stress etc. I feel like I'm being a pain bothering them but it bothers me! I get so scared as I'm sure lots of people do? I find it hard knowing what to say too them as they seem to put words in my mouth about how it feels. I never see the same person twice either so I get frustrated, sorry to vent but it helps talikng to youz. Can I just ask, with what I described what sort of arrthymia should I say to my cardio I think I felt?
Thank you so much again,
Lisa

 

[LisaK]

Reply to drivetopless:
It's just happened twice this week. I've had a racing heart before but it felt like it stayed in a rhythm, this felt all random and out of sorts but both times it only lasted for about five minutes maximum. Hope you feel better soon

 

[sue943]

As you are UK I guess you have to go through your GP anyway rather than direct to the cardiologist, what is your GP like? Will s/he listen to you and your concerns? I know my own GP is brilliant and will listen and also won't take any chances with my health. Do you use Birmingham?

 

[Lynlw]

Thanks for your replies, I've been to my cardiologist with racing heart beats before and he did some 24 hour monitors but it never happened They say it's down to stress etc. I feel like I'm being a pain bothering them but it bothers me! I get so scared as I'm sure lots of people do? I find it hard knowing what to say too them as they seem to put words in my mouth about how it feels. I never see the same person twice either so I get frustrated, sorry to vent but it helps talikng to youz. Can I just ask, with what I described what sort of arrthymia should I say to my cardio I think I felt?
Thank you so much again,
Lisa

When you are talking about never seeing the same person twice, are you talking about at your cardiologist? IF they are part of a group, I would ask if you could have 1 doctor as your main cardiologist and not just who happens to be coverring the office what ever day your appt is. Justin's cards have always been part of a group, but 1 doctor is HIS cardiologist, and all appts are made on the day he is in the office, not the cath lab or floor. (Unless something comes up and he is not around, then whoever is on, takes care of him) That way the cardiologist gets to really know you and your heart, instead of just reading your chart.

Since it seems like these don't happen daily or very often, chances are it would be hard to pick them up in a 24/48 hour monitor. Maybe you could ask about an "event " or King of hearts type monitor that you wear for about a month, I found this description of the different monitors http://www.heartcenteroftherockies.com/images/file/PDF/Heart_Rhythm_Monitoring_1650a.pdf

 

[bdryer]

What is the manufacture and model names of your clicking aorta valve? Their has been a lot of discussion regarding the noise level between mechanical valve manufactures. It would be interesting if you could enlighten us/me.

Thx

 

[kfay]

Lisa, they had you wear a 24 hour Holter monitor which records your heart continuously during that time. There is another kind of monitor called an event monitor (or here in the states it is sometimes referred to as a king of hearts monitor), which you can wear for up to a month. It only records (for about 15 seconds at a time) when you push a button when you feel that you are having a weird rhythm. You can take it off to take a shower and then you put it back on. You should request to have this type of monitor since you don't have these rhythm issues every day.

I also would not worry about feeling like you are bothering your Dr's. They need to know what is going on with your heart. They have no idea if it is stress or not at this point and for them to just dismiss you like that is unacceptable. What you are experiencing could be a benign rhythm, but you also could be going into a-fib, which can cause a whole other set of problems. So bottom line, you just need to know what is going on and the only way for that to happen is to catch it on a monitor. So, go bother those Dr's this week and make them listen to you! Good luck.

Kim

 

[normofthenorth]

Lyn, I think the British NHS arrangement often gives patients that "musical doctor" treatment, with a different, or random, doctor (often called a "consultant", a word we'd never use) on each visit. It was (and still is) a frustration among the British Achilles-rupture folks on the other forum I spend too much time on. I think Canadians and (covered) Americans are spoiled/blessed, being able to choose our own professionals, stick with the ones we like, and build up a lasting relationship with them.

 

[LeakyUK]

You are so right!. The Consultant is the department chief, most people will see a lower level staff member (Registrar). My first visit to the Cardo led to the Consultant coming in for a second opinion (The Registrar fiddled through my Notes while taking my history but did NOT inspire confidence!. However I have been very well treated in recent months for a number of investigations and the system usually works very well. We also have no worries over treatment costs.

 

[drivetopless]

Lisa-
I have a mechanical AV, too. I have an On-X. I can hear it most of the time, which has really come in handy for "listening" to the type (irregular, regular, number of beats before it "skips") and speed of heart beat (pulse). Do you have a device at home for measuring blood pressure/pulse? If so, it can probably give you an indication of your pulse during an episode.

Since you feel when you are having episodes, may I suggest you start ot keep a log of the frequency, duration and type of heart beats to take with you to the doctor. You will also be able to see if it is becoming more frequent and if there is a trigger like exercise/anxiety/rest. That way you have something to explain what you are feeling and how often.

I am doing this right now on the suggestion of my surgeon for my cardio as we try to find the right medication to manage the afib and aflutter. BTW, I think the irregular heartbeats can trigger adrenaline, which will make you feel anxious. So, to me (and I'm not a medical professional), it's a case of which came first- the adrenaline rush or the flutter.

Wishing you the best.

 

[sue943]

The consultants are static, it is the junior doctors who move - heaven help you if you have an appointment in early August!

It used to be consultants (most senior doctor and where the buck stops), registrars, house officers but now the house officers are F1 and F2 - foundation years 1 and 2, that is years after qualifying as a doctor. My son-in-law is a registrar, he qualified when he was 24 and is now 34, he still has a way to go before becoming a consultant.

Where I live we don't have the NHS but have the same medical structure and hospital treatment is free, like the NHS. Also because where I live is too small to maintain various specialties, such as cardiac surgery, so we have to travel to the UK and use the NHS. I spent weeks in St George's, Tooting, and have nothing but praise for the treatment but the food was awful there.

 

[normofthenorth]

If we all used descriptive and consistent terminology for the professionals -- how about "Department Head", "Vice Head", "Assistant Vice Head"?? -- then the differences between the national and regional systems would only be. . . confusing!

At TGH in Toronto, the food was the stand-out bad feature. Almost all the staff were totally aware that it was a joke. At the pre-admission briefing, several of them advised me to have some fruit and whole-grain foods brought in, because I wouldn't get any on my tray. And it was sad but true. After my blood sugar went too high post-op, they specified a "diabetic diet" for me. Even then, I saw more empty calories, over-refined foods, and high-glycemic-index stuff on the tray than I'd ever eat at home. I don't hang out in health-food stores, either, I'm just talking about eating FOOD! (I think it's Michael Pollan who suggests that you try to eat food your Grandmother would recognize as food. . .)

 

[LisaK]

As you are UK I guess you have to go through your GP anyway rather than direct to the cardiologist, what is your GP like? Will s/he listen to you and your concerns? I know my own GP is brilliant and will listen and also won't take any chances with my health. Do you use Birmingham?

Hi there, I have visited my gp, he is really good but sends to send me to a & e alot, I hate sitting there for hours! He has said he will get in touch with my cardiologist and ask him to bring my appointment forward. I use Coventry hospital but also have a Professor in London that I see regularly for my Takayasu's disease. I went to a & e the other night and the ecg was fine but the irregular beat was happening then. I shall wait and see what happens when I see my cardio. Thanks for your reply

 

[LisaK]

What is the manufacture and model names of your clicking aorta valve? Their has been a lot of discussion regarding the noise level between mechanical valve manufactures. It would be interesting if you could enlighten us/me.

Thx

Hi there, My valve is a mechanical aortic valve. It's a ST Judes 25mm. It clicks loud, lol!

 

[LisaK]

Lisa-
I have a mechanical AV, too. I have an On-X. I can hear it most of the time, which has really come in handy for "listening" to the type (irregular, regular, number of beats before it "skips") and speed of heart beat (pulse). Do you have a device at home for measuring blood pressure/pulse? If so, it can probably give you an indication of your pulse during an episode.

Since you feel when you are having episodes, may I suggest you start ot keep a log of the frequency, duration and type of heart beats to take with you to the doctor. You will also be able to see if it is becoming more frequent and if there is a trigger like exercise/anxiety/rest. That way you have something to explain what you are feeling and how often.

I am doing this right now on the suggestion of my surgeon for my cardio as we try to find the right medication to manage the afib and aflutter. BTW, I think the irregular heartbeats can trigger adrenaline, which will make you feel anxious. So, to me (and I'm not a medical professional), it's a case of which came first- the adrenaline rush or the flutter.

Wishing you the best.

Thanks for your reply. I think it's the fact that I hear all these irregular beats they are more of an issue for me, but as you say at least I know when they are happening. I will keep a diary to show my cardiologist when I see them. The anxiety definately comes but before or after the episodes I'm not sure but it stays around for a few days after because I worry about it happening again.
I hope this all settles soon, lol.
I hope you get your medications sorted and are feeling well soon