sudden death and sleep apnea

[caroline]

Well folks, the results of my sleep study are in and the report says I have the most massive, severe apnea they have ever studied at our 5 year old sleep center.

I have a total absence of REM sleep. I have 88 average apneas a minute. More than 5 is considered abnormal and more than 30 is considered severe. My oxygen saturation went down to a low of 73% during sleep. These statistics add up to a high likelihood of death in one's sleep.

I am deeply angry over the fact that the HCM specialists were pushing me so hard to get a defibrilator. When I told them my quality of life was so poor that it wasn't worth preserving, they just were impatient with me. When I asked them whether a defibrilator would help my horriable exhaustion, they said no. No one of the 5 cardiologists I have consulted has EVER asked about my sleep.

I think it is shocking and outrageous that these Doctors would put a defibrilator in a person without making certain there wasn't any other problem that could generate even more risk for sudden death than HCM.

I will not ever have a defibrilator put in me. I'll be wearing the sleep apparatus called CPAP.

Caroline Paulson

[jorgusen]

You see it time after time in these posting ,,once someone is diagnosed with HCM,, every problem that comes up is due to HCM. No we are not immune to everything else ,,we get stuff too..
we need to take extra care of our bodies so we dont add to our problems.
eating right
exercise
not being overweight (most people that are obese are easily fatigued)
sleeping 8 hours
good attitude

[progers]

I think doctors occasionally get very blinkered about things like this and sometimes ignore other ailments, as in your case. It has happened to me. But don't let this experience put you off a debrillator. It sounds as though you have risk factors for sudden death, otherwise the doctors wouldn't be recommending it.

It will be interesting to see how your general health improves once you do CPAP. My friend's quality of life improved dramatically once he started using it.

Paul

[Pam Alexson]

I think it is important to remember that the HCM specialist is very involved in the assessment initially and then the diagnosis and also the management of a disease called HCM and we are seeing specialists for the oversight and care of this disease. These specialists are not seeing us on a regular basis at least for some individuals and the micromanagement of our general well being needs to be done by a PCP and various other specialty docs.

We need to remember to ALWAYS be PROACTIVE in ways that are beneficial to our overall health management. We need to take a very active role in directing the forces that send us for evaluations AND YES we must multi task by persisting when we are doubted and then coordinating all the service providers like we are running a corporation and not our health management. We cannot ignore symptoms or situations that heighten our own suspicions that something else may need to be evaluated. I know this is a monumental task and many will say, "well the doctor said nothing like that was happening!"

The majority of us here can certainly attest to where that got us. We went misdiagnosed and under treated for far too long which MAY have resulted in further damage of very vital organs. HCM can impact many areas of our health functions over the long run and we have to be astute to what we feel and what others may be saying about us when they observe us.

I can only speak from my personal experience and you might say, well you are a nurse so you are more in tune to know these things.. that's false.. I relied heavily on my PCP's assessment of me all the years I worked as a nurse. My background although varied was predominantly as psych nurse...but, I always thought of the TOTAL patient and how every entity of their health is a part of each system that uniquely effects their overall health.

I personally agree that more health care providers should look at the WHOLE picture of our individual health and specialty docs should also BUT... and that is a BIG but... those days are gone and we are now in managed care and specialty doc itis. That is really a positive thing in the long run that we have the opportunity to seek so many varied EXPERTS. That now requires a new position: director of our medical management, coordinator of services and overall gate keeper.

As I write this I think of our dearly departed Burton B. He was astronomical, among many other great qualities, at managing his multiple, challenging, medical issues. Burton validated for me that those w/ out a medical background can do a nice job, in fact an excellent job in rounding up all the docs who cared for him into one arena. I am sure they did not all appreciate it all the time and sometimes he could go over the top..but it probably kept him alive a lot longer and also his self involvement gave him something to do, to learn from and share w/ others as he often tried to teach us.

Let us take a little page out of that big ole book of Burtons and try to self micromanage our care better. Lets use those lemons for something that can only help us.

If you are not directing your own care through a PCP then start today. Get your records and begin to coordinate your services and make copies, fax, e-mail.. do what you must.

If you are having symptoms of some medical problem ..get on it! Don't hesitate ..persist. If you are not getting anywhere w/ your doc..FIRE him or her and interview ..yes interview another.

It is not easy and I am sure some of us ( me too) are a little annoying to our PCP and staff initially. It can be done w/ a good attitude and it has worked well for some of us.

If anyone feels timid..just think of how very important each of us really are to our own selves as well as all those who love us and want us to fight! WE are worth the obstacles in our path and the battles we fight!

Pam

[Lisa Salberg]

I think Pam said this well I will add a few thoughts.

We all have many issues health wise and not everything is going to be caught by every doctor. While there are key items that you may say that will triger a doctor to think about a co-ex condition, it is not always the case that this will happen.
Sleep Apnea is rather common so it is expected that a set percentage of those with HCM will also have it - I would guess about 15% of our population have been diagnosed with it.

Lisa

[gfox42]

Pam's words are wise. I have only one thing to add.

Caroline, in your position I'd be angry too. But that doesn't mean you shouldn't get an ICD. If your doctors think you're at risk of sudden cardiac death, an ICD is a good idea even if those same doctors were thinking narrowly and not paying attention to what might be a larger risk.

Presumably you'll sleep better and feel better with treatment for your sleep apnea. I hope you'll start to feel as though your life IS worth preserving . . . and an ICD might be part of that.

Gordon

[Rich Miller]

hi ,fyi the people that convinced me to get a sleep study were the nurses in the ccu at prcidence hospital. and yea mine was bad too ....lol but after 3 yrs with cpap doing much better Rich

[mtlieb]

Hi Caroline,

Sorry to hear of your disappointment with the HCM specialist but glad to hear you were able to get testing and treatment for your sleep apnea. Good for you! I hope you can get that taken care of and that your quality of life improves significantly. You certainly deserve it. :cool:

One thing to keep in mind is that if your HCM specialist has advised you to get an ICD, that decision was likely based on cardiac risk factors alone. Even with the sleep apnea under control you may very well still need that device because of HCM-specific issues. But that of course is your choice. I don't have an ICD myself and I'm not certain I would want one even if advised to do so. So we are alike in that respect.

Whatever the outcome, I wish you the best.

Jim

[caroline]

Thank you for all your thoughts and concern.

The truth is, I've been aggressively managing my own health from the start. I've always demanded my own records and consulted with probably 1000 MD's over my lifetime. My persistence and intellect are the only reason I have gotten diagnosed with tethered spinal cord, spina bifida, HCM and gotten my unusual diabetes handled.

I have consistently told Doctors that my life was barely worth hanging on to because I am so beaten up and exhausted all the time. I have done my very best to look for all possibilities over a 50 year duration.

I don't think any of you meant to imply that I hadn't done my best, but maybe some of you in fact believe that. This is not true. I have spent decades in NYC seeking out the best and the brightest medical people, and some of them managed to help me enough for me to survive. To date, I have had 58 surgeries.

And NO I will not be getting a defibrilator.

And, I think any Doctor who would demand that a patient get a defibrilator without at least asking about sleep problems is an irresponsible creep.

[halversa]

At our last cardiology appt in Feb, our cardiologist said that all of her HCM patients and A fib patients are now required to get a sleep study. No choices, tried to talk her out of it, and she said no way. So maybe there is some study or education that has been updates recentlhy regarding sleep apnea. (She had never mentioned it prior to this appt).

[Eileen2345]

Hi Caroline,

I hope you get back your REM sleep soon.

We all should have all 5 stages of sleep going on over and over, all during the night. When I don't get enough sleep, I am very unhappy. I hope you feel better soon.


It is your decision whether or not to get the ICD.

I have one and I have no regrets.




My brother Dean -- God bless him -- did not think he needed a defibrillator back in 1995. The doctors tried to tell him, but he was resistant.

My brother Dean died March 29, 1995 at 6:30 pm in a shopping center. Two nurses nearby saw him collapse, they ran over to him and started CPR. He took 2 breaths during CPR, then he stopped breathing and was not responsive at all.
Everyone standing around the scene was stunned.

The paramedics were there in 4 minutes, they shocked him several times there on the floor, no response. They kept upping the joules -- but still nothing.

They shocked him all the way to the hospital in the ambulance, he was dead on arrival.
When they got my brother to the hospital, the ER doctor did not want to give up, he shocked him several more times.
My brother never woke up.

My brother Dean was 34 years old.
Cause of death -- "Venticular Fibrillation due to Hypertophic Cardiomyopathy."



I wish he chose the defibrillator.

[Reenie]

At our last cardiology appt in Feb, our cardiologist said that all of her HCM patients and A fib patients are now required to get a sleep study. No choices, tried to talk her out of it, and she said no way. So maybe there is some study or education that has been updates recentlhy regarding sleep apnea. (She had never mentioned it prior to this appt).

Where is your cardiologist? Is this a specialist or a cardiologist? I haven't heard of any other physicians requiring a sleep study for HCM or a-fib patients. I'm just curious.

[caroline]

It is certainly a good thing to hear that somewhere, they are requiring a sleep study for those of us with a heart rhythm problem.

I complained constantly of waking up with a racing heart to my HCM specialist, and said I couldn't understand it. It certainly didn't seem to me that my heart should race when I was sleeping. Of course, this is a dead give away that the problem is disturbed sleep. I do think that during the last 5 years ANY cardiologist should have been alerted by this remark of mine.

I have a jaw that is in the wrong place. This is obvious and has been known since I was a child. An orthodontist tried unsuccessfully to create a change in this. Since then I have often gone to ENT Doctors about my problems with ringing in the ears, constant sore throats, etc. Without fail, when I mentioned my jaw, they said the jaw was not a medical issue--it was a dental issue.

Now it has become obvious to me that the jaw being in the wrong place has pushed my tongue far back into my throat, massively predisposing me to sleep apnea. I guess my jaw is, in fact a medical issue--that is if any common sense is employed.

I am 61 and in fact am far gone down this negative road. If I had gotten a defibrillator, I would have died in my sleep anyway. I don't think the shock from a defibrilator would change my unbelievably low oxygen levels while I sleep---In any case, I choose not to extend a life of such a lousy quality.