Just getting over my fears when

[Christina L]

I got a call from my PCP's office this morning regarding my sleep monitor I wore about three weeks ago. Anyway, the lowest my heart rate got was 40 (gasp!) and the highest it got during sleeping hours was 95!! Also the lowest my pulse oximetry got was 83% and the highest was 97% - the average on the pulse ox was 89.5%. My PCP wants to do another sleep monitor with me wearing oxygen.

I called my cardiology office and spoke with a nurse about the pulse ox getting into the 80s and she said this is not unusual while sleeping. BUT what about the heart rate getting as low as 40?! That seems insanely low. I have a call into my cardio office regarding the heart rate.

If you remember, my recent echo showed possible right heart dilatation. My cardiologist told me last week that in a year he thinks there will be "no change" in that and that the echo very likely could have been a tech error and also that he is certain I don't have pulmonary hypertension. However, I worry-worry-worry. I have been hyperventilating since November 1 and unable to take a deep breath most of the time. Last night while watching TV and getting my mind off things for a while, I realized that I was breathing very normally, even lying supine.

Any reassuring words would help me. I have been looking to God a LOT and praying and He/She has been merciful in easing my fears somewhat, but every time I have a setback (like this phone call) I get crazed again.

Thanks everyone.

Christina L

 

[Christina L]

One more thing -

One more thing -

I don't know when exactly on the monitor the heart rate got to 40 - BUT in the middle of the night (3 am) I had to get up and take an Ativan and a Benadryl to get to sleep because I was a nervous wreck wearing that monitor. Do you think these meds depressed my heart rate?

Thanks.

Christina L

 

[Christina L]

Mark,

Mark,

Thanks. I sent you a private E-mail regarding the Lexapro. Still have not talked to my PCP about the Lexapro but took myself off the Prozac yesterday - it was hyping me up something terrible and I already feel better (believe it or not after what I wrote on this thread I started - ha) without it - LESS nervous.

Christina L

 

[Christina L]

Thanks Mark -

Thanks Mark -

I will check on the Lexapro.

BTW, my cardio's nurse just called regarding the 40 heart rate and said that this is not unusual! She said since my average heart rate during the day is usually in the 60s, that getting down to 40 is not unusual, especially in a deep sleep.

HOWEVER, that said, she told me to go ahead with the sleep monitor with oxygen and she seemed very interested in having the results faxed to them.

I feel like there is a "conspiracy" out there - that the doctors, nurses, Wayne, everyone - are just telling me good things so that I do not go nutso again. And did you know that is a classic symptom of a hypochondriac - not believing their doctors (?).

However, my therapist told me that I am not a classic hypochondriac - only with regards to my heart. That's good news, I guess. Hee.

I welcome ANY and all suggestions and thoughts on the heart rate and pulse oximetry. AND if you want to lecture me, go ahead. I probably need it.

Christina L

 

[WendyD]

Hi Christina,
hope that you are feeling a bit better, please let your Doc know about you taking yourself off Prozac, it is better just to lower the dosage gradually before stopping completely, also it might be worthwhile to have a chat to him about the combination of meds you are on at present and that they might be interacting with each other too. (I cant take Benadryl as it makes me very shaky) Hoping you get to feel very much better very soon
Kindest regards &
Very Best wishes
Wendy

 

[Christina L]

Thanks Wendy -

Thanks Wendy -

I am not taking Benadryl any more - I used to take one a night to help me sleep like a log - thinking I needed it - come to find out I sleep just fine without it! Also I have not been taking Ativan regularly recently.

I do know that it is risky to go off the Prozac so abruptly, but I was a nervous wreck with it and it was only getting worse. I was only on it for about 4-5 weeks.

I WILL ask a doctor about the Lexapro but I am in no rush. I have never responded very well to antidepressants over the years and have never been on them for any length of time - probably a few months at the most - however, this situation (my scary echo) warranted something. It was more anxiety and fear than depression. In my distant past, I have been on Prozac, etc., for depression over silly stupid things - wish I would have known when I was younger how lucky I was!!

Like I said, I have been praying a lot and walking on my treadmill - those two things (I know) have helped me probably far more than the Prozac.

Wendy, you are sweet. Thank you.

Christina L

 

[Emma]

Christina,
I can't help with your situation I'm afraid as it's not something I know anything about but have read your posts on it and just want to send you big hugs from across the pond!
The one thing I do know about is an overwhelming fear of a medical condition - in my case its my daughters, not mine, but that fear is so familiar to me - the memories of that all consuming worrying, sick feeling I'll never forget, and I wanted you to know you're not alone!
Love to you
Emma
xxx

 

[Christina L]

Thank you Emma -

Thank you Emma -

I cannot imagine worrying about a daughter or another loved one with this condition. I know it worries Wayne - but he doesn't let on. I never saw him cry when I had my surgery, but my sister did. He keeps those things from me.

I'm glad that you understand - that is why I always turn to VR.com when I need reassurance and guidance.

BTW, IF we adopt a little girl from China, the #1 name we have picked out is Emma, which BTW is like the #1 name in the US right now and in several other countries!! I wanted to name her something "unique" but just love the name Emma so much - so what if there are 4-5 other Emma's in her class at school.

Thank you, Emma, very much for your kind words. It means a lot.

Christina L

 

[Lynlw]

I know Justin has different heart problems than you, but if it helps, his heart rate is usually low and when he had his pacemaker, it wasn't set to fire unless his heart rate went below 40, Lyn www.caringbridge.org/nj/justinw

 

[Christina L]

Thanks Lyn -

Thanks Lyn -

That is helpful albeit a little scary. I know in the days following my surgery while in the hospital, they couldn't get my heart rate up or my BP - they were going to send me back to the ICU if my heart rate went below 40 - so I stayed awake watching the monitor all night - not wanting to go back to that awful ICU!

The nurse today from the cardio's office didn't seem too concerned but like I said, she wanted the study results faxed to them and also she said to go ahead and have the monitor put on again with oxygen.

One more question for anyone out there in VR.com-land - my thighs have been burning and kind of achey lately - I have attributed it to "terror" - you know how your legs get all wobbly and Jell-O like when you get scared. Anyway, any thoughts on what this could be from?

Christina L

 

[bvdr]

Hi Christina, I would go ahead and do the sleep monitor with the Oxygen to see if it makes a difference. I think getting your 02 saturation of 83% isn't something to be ignored whatsoever. The pulse rate of 40 if your daytime normal is in the 60's doesn't sound out of line but the pulse of 95 when sleeping does. I wouldn't be surprised to find out that your pulse rate became elevated as your oxygen saturation dipped. It may be a perfectly normal response to some sleep apnea which is being recognized as something that should be treated. I'm not sure if the Ativan and Benedryl was a factor but it is a question well worth asking your MD.

Maybe if we could keep you better oxygenated you anxiety level would drop too. Anyway, I sure hope you feel better soon. Let the testing be done and see what happens. Life stays interesting doesn't it? I left a neurololgist appointment yesterday with a prescription for the anti-depressant Nortryptiline (sp?) that is hoped to help my neuropathy and orders for yet a few more tests including a MRI. Do you still have my phone number? Call anytime you want, OK?

 

[Christina L]

Hi Betty -

Hi Betty -

Thanks for your post. I have been watching for new posts all day here on Vr.com.

The gal from the pulmonary office couldn't tell me much as she is not qualified, but she told me that to go up and down in heart rate is common. However, she said the range most people stay in is 60-80 beats per minute. She said a lot of people go way over 100, but those could be people who have a sleep disorder.

I was the one who wanted sleep apnea to be checked for - as I had read about it on the internet - that it causes right heart enlargement and comes part and parcel with heart disease. So, my PCP ordered the sleep monitor. My cardio is just like "You're fine. Come back in a year. You do not have pulmonary hypertension. The right heart dilatation could be not even a fact/the echo could have been done wrong. I think the heart will be unchanged on next year's echo. We need to get you to stop worrying." His words. I am trying very hard to believe him and was doing pretty good after our visit with him last week until I heard the news of my high and low heart rates. I do suspect sleep apnea - being that we live at this altitude, I have allergies to our cats and also because of my heart valve issue even though my cardio tells me my heart is "normal" now. Oh, I wish I could believe that one!!!

Betty, can you PM me with your phone number? I may just have to call you -I hope you won't mind.

Yes, life sure stays interesting. It's funny but this was my biggest fear on having the surgery - of course I wanted to have the surgery and go on my merry way, BUT I had the fear that the surgery would be the start of the rest of my life full of doctors and hospitals. I liken having heart surgery to getting your car repaired - fix ONE thing and something else will go wrong.

Aren't I just a bundle of good thoughts?

What is neuropathy? I didn't know you had such a thing. Is it part of heart valve disease? Connective tissue disease?

Thanks bunches Betty! Have a nice evening and I hope you are having a wonderful Christmas.

Christina L

 

[Ross]

What is neuropathy? I didn't know you had such a thing.
Christina L

I am neuropathy. I get on your nerves all the time don't I?

 

[Christina L]

Are you asking Betty or me?

Are you asking Betty or me?

You NEVER get on my nerves, Ross. You are a gentle soul. So, what do you have to say about my heart rate, etc., Ross? Please help if you can.

Christina L

 

[bvdr]

What is neuropathy? I didn't know you had such a thing. Is it part of heart valve disease? Connective tissue disease?



Christina L

Neuropathy? Basically it is damage to an area supplied by a malfunctioning nerve. A pinched nerve, diabetes, connective tissue disease, or a lot of other problems can cause it but.........NOT from valve disease. You can relax on this one.

 

[Mary]

Christina,
Here's what I understand about sleep apnea. Your heartrate of 40 is low and your 83% O2 saturation is too. However, the apnea is probably more a result of obstruction, such as soft tissue, or hypoventilation rather than your heart. Recent studies have confirmed that many people previously diagnosed with CHF actually had sleep apnea, thereby causing the stress on the heart and the resultant chamber enlargement.

So, it sounds like yes, you probably have sleep apnea, but your concern about your right heart might be resolved if you get the apnea under control. After you do another sleep study, you should know some answers. And please don't take any medications when you have it done. It can skewer the results.
Mary

 

[azpam]

the pulse ox of 83 is too low! for patients to qualify for oxygen therapy that medicare will pay for,the pulse ox needs to be below 89. so that tells you that you were definately not oxygenating well.you might find wearing oxygen at night will relax you better and you will sleep better/more restful waking up in the morning.

 

[Christina L]

Thanks for the last two posts gals -

Thanks for the last two posts gals -

My worst fears/suspicions are coming true. If it weren't for my persistence about this, I would have been left for another year to wait and see if my right heart enlargement worsened and I developed a-fib, etc.

I still truly want to believe my cardio's and the nurses so far have told me that getting into the 80th percentile in saturation is not unusual - especially up here at 7700 feet elevation. But....everything is just kind of pointing to SA. I do have severely enlarged turbinates from my cat allergies - told that years ago and a markely deviated septum - I also have a small jaw which can cause sleep apnea AND I took one Benadryl (basically a sleeping pill) at night for several years which is a BIG no-no for someone with suspected sleep apnea. What is interesting, though, is that this has obviously just all started happening AFTER my surgery. I have lived up here at this elevation for many years now - seven years I believe, so why now?

Anyway, I may be looking at nasal surgery pretty soon and wearing oxygen at night. Does oxygen or a CPAP machine really help I wonder?

Thanks everyone. My anxiety level is getting higher and higher....but I'll be okay. Prayer - lots of it tonight - lots!!

Christina L

 

[Mary]

People with severe sleep apnea swear their quality of life improves almost 100% when they go on C-PAP.
Christina, I think you should view this as a positive event.
By the way, sleep apnea can develop in people at any time, with no known trigger.

 

[Christina L]

Thank you Mary for your encouraging words on

Thank you Mary for your encouraging words on

CPAP - you are SO right, I need to look at this as a positive thing - really what I am learning through ALL of this heart stuff over the last few years. I have always been kind of a "the glass is half empty" type of person (bet you guys didn't know that - ha-ha!) and God is teaching me to turn back to Him and to trust him so I can look at life through different eyes. All these years of paying lip service to God and praying for other people - expecting God to help them, never really asking Him to help me, and not putting God FIRST, which is the key to happiness on tihs earth, I believe. I hope this doesn't sound like a sermon and that I don't offend anyone but these are my beliefs and I am not pushing them on anyone.

Yes, I need to think positive and to just live ONE day at a time, which is another thing that I used to pay lip service to, but never really did it. Life is all about learning and growing - did anyone watch the Barbara Walters special last night? That was fascinating and inspiring.

Thanks Mary.

Christina L