Good yet confusing news Dr Fett

[mommafisch]

I posted on the main board that I found out today that after 4 and 1/2 years I have finally reached an EF of 55%. This was great news but still a little shaky because the main reason the echo was done was because I am still symptomatic. I am on 25 mgs of Coreg twice a day and 100/25 mgs of Hyzaar yet yesterday my bp was 140/104 and heart rate was 100. I also am still suffering from fatigue and shortness of breath form mild exertion(2 flights of stairs or doing a lot of bending while cleaning). I sweat buckets and am eat intolerant. Sweating is so bad that my cardio noted it as part of my general appearance on yesterday's report( I always ask for a copy for my records) He also noted that with my tachardia I had a pitched and loud P2. As I have mentioned before I am on 2.5 liters of O2 at night due to an oxygen saturation test that revealed my o2 drops into the 80s periodically as I sleep. I don't exactly know what my question is except maybe why so many problems after reaching such a great milestone? I saw my cardio yesterday and he was concerned enough to do all these an echo and a bnp(my level was 11) and today the nurse calls and says it was all normal. I know at 55% i should be feeling great. Are there other causes i should be looking into? Thanks Sonya

[mikeyandBellesmommy]

Has your doc done any bloodwork to see if maybe it isn't you heart, maybe thyroid or somethign unrelated. My doc just sent me for blood work becuase I keep having palps and fatigue and she thinks it isn't my heart. I personally am still afraid it is, but you never know I guess

ALso I got super symptomatic when I needed a med change, some of the side affects of the meds are HF symptoms, such as fatigue shortness of breath etc... maybe you need to lower your meds, wouldn't that be awesome!

Cari

[SarahsMom]

Ditto - Carianne's message...have your thyroid checked. It could be a "hyperactive" thyroid. Your EF / BNP numbers are excellent! Just wonder why you're not feeling fantastic. Doesn't sound like your heart - definitely have they thyroid checked out.

Kari

[melissamph]

Do you have sleep apnea? Are you in good physical condition?

[JAMESFETT]

Very encouraging news, Sonya. I posted a note over in the general form also. The most important element is that your EF is 55 percent, wonderful and gratifying! Someone is right in mentioning sleep apnea, because that is one of the leading causes of oxygen desaturation of the blood during the night. You have probably had the necessary testing to rule-in or rule-out sleep apnea. If sleep apnea is present it is very well treated with positive pressure airway mask during the night, something easy to adjust to, and most helpful in eliminating oxygen desaturation without the necessity of supplemental oxygen. Sleep apnea is also a cause of hypertension. Despite these other problems, the most wonderful part of your story is the progressive improvement of your heart function.

James

[mommafisch]

Thanks for all your responses. I am not sure about sleep apnea. Would the overnight oxygen saturation test have picked up on sleep apnea. Form what my doctor said it wasn't that I quit breathing during the night, but that my O2 was dropping down into the 80s for periods of time during the night. I assumed if it were sleep apnea my breathing would stop for a short while and I would waske up, maybe not aware of waking up. I don't think that was the case with my tests I think the drops in oxygen level were for longer periods of time but not I never stopped breathing. Also if the meds are to blame for fatigue and shortness of breat would it be wise to lower my meds if my bp is still around 140/104 and my heart rate between 100-110? I have always felt my meds tired me out but my cardio has said that the stronger my heart gets the more meds I could handle and it is my belief that he wants my bp and heart rate lowered. I would appreciate any more comments. I have had my thyroid checked and it is alway normal. My GP has suspected thyroid at many times. I have an appointment with him next week, but it is always great to get input from here as well. Thank You all.

[melissamph]

I know that you certainly qualify for a sleep apnea study! An overnite trip to a clinic or hospital setting to watch you sleep. I know I have worked with patients that have it and they sound alot like you. Dr. Fett also thinks it is worth checking out. Let us know. It is soooo good to hear from you Sonya!

[JAMESFETT]

Are you sure you don't have periods during the night when you stop breathing? Has your sleeping partner told you that? Do you awaken frequently? A screening test for sleep apnea is the oxygen saturation test. Anyone whose oxygen saturation drops significantly during the night is a candidate for testing called polysomography. A bit involved, but worth doing. There are sensors on the scalp to see the brain wave pattern for sleep or awakening stage, there is a sensor near the nose to detect air movement, there is a detector around the chest to detect chest cage movement, and there is an oxygen saturation sensor on the finger. Because many people have trouble going to sleep with all those sensors, it is sometimes helpful to take a sleep medication prior to the test, which is OK, because all the test is looking for is the mechanics of sleep.

James

James

[mommafisch]

I have done some research and I am definetly gonna ask my internalist when I go next week what he thinks. I am sure he can look at my earlier test results. I do remember that my Dr at that time told me that my oxygen level dropped into the 80s, but did not mention that I actually stopped breathing at any point. My husband has never noticed this either, but I do spend the majority of most nights in the recliner because I feel more comfortable there. I must confess I am a little anxious about using a cpap, because I was put on one while in ICU and felt as if it were smothering me. I realize that with an ef of 10% and Pulmonary Edema it was not the machine that smothering me but my own body. I still have strong anxiety about having to put a mask my nose. Are the machines used at home the same as the ones in the hospital?

[JAMESFETT]

First, fiind out if you have sleep apnea. If you don't have it you don't need to worry about a nose mask. People who have it and who use the nose mask at night have found it is a terrific solution because they feel so much better with a restful sleep, and if they have hypertension, it helps to improve that. The newer machines are whisper quiet and a variety of masks makes a good comfortable fit possible. Prior to the development of CPAP the only treatment available was a tracheotomy, thank goodness we are well beyond that stage. Outside the acute heart failure setting, and under normal conditions at home, when I see a patient with night-time oxygen desaturation (80 percent is serious!) I move right away to testing for sleep apnea, because I am far from the patient's bedroom and know nothing about the true sleep pattern of that individual.

James

[mommafisch]

Dr Fett,
You are so kind to always apply so deligently to out posts. You will never no what a comfort you are. I know it is always important to see our doctors and follow thier advice, but it is a comfort to have some one like you so knowledgable in the field to discuss problems with as well. Thank you so much for all you do. I started a new thread today, because my cardio's nurse callled and he has recommended clonidine. I thought you or other's might like to know and give some input. Sonya