The Waiting Game and I am not making much progress

[Der Biermeister]

My crisis took me to the emergency room a week ago Monday. Diagnosed with AI. (See my story under Valve Selection) I got released last Friday.
I've also had sleep apnea for many years and NEVER had a problem using CPAP -- until now. Even with supplemental O2 (2.5 L), I feel as if I am suffocating when lying down at night for sleep. I get maybe 3 hours sleep and then wake up around 1 AM and am pretty much up the rest of the night, even after trying different things to get me tired enough to return to sleep.

So -- except for one good night in the hospital (Last Thursday, when I got 6 hours sleep), I have only gotten an average of about 3 hours sleep since. I know the AI is at fault when laying prone. I've been doubling my Bumex to try to get rid of as much fluid as possible. I guess I can keep doing that for the next week?? until I return to my doc. Anyone see a problem with doing that? Yes, I take supplemental Potassium.

I've actually gotten rid of a lot of fluid in the last 10 days, and am wondering why I at least haven't returned to my pre-crisis days, where I was simply winded after walking a 1/4 mile. Now, I get winded with walking only 100 feet.

So tonight's question for those of you who have AI is this: If your doc tried treating you with meds, did you ever see much improvement? I mean is it possible to stabilize this condition, or are the docs only kidding themselves?

DB

 

[Lynlw]

I'm sorry I can't help w/ your questions, but I was wonderring if you have a recliner or know where you could borrow one to try to see if you could sleep a little better in. Welcome, I'm pretty new here (my 17 year old son just got a pulm valve) but this is one of the most knowledgible groups of people I know, Lyn www.caringbridge.org/nj/justinw

 

[Cris N]

I'm sorry I can't help w/ your questions, but I was wonderring if you have a recliner or know where you could borrow one to try to see if you could sleep a little better in.

I was going to say this as well. I would definitely try sleeping in a more upright position. I presume you've notified your dr of this situation...? Wish I could be more helpful.

I hope you get some relief soon.

Cris

 

[JimL]

A doctor diagnosed very similar symptoms in me as orthopneumy -- I may have remembered the word wrong. I could breathe only when I was sitting up. I had tried to sleep sitting at the table with my pillow in front of me -- it didn't work very well. Nearly four years after surgery, I still enjoy and marvel at how easy it is to breathe.

 

[OldManEmu]

DB
This sounds very similar to the severe heart failure I went into caused by AI and AR in the week before my AVR. Fluid retention and difficulty laying down and sleeping. My O2 levels were also low 90's. I was treated with a variety of drugs to get things in a condition were I was able to have the AVR.
Lying down normally increases blood pressure in the lungs however this is only a problem if other things such as heart failure are present then breathing becomes extremely difficult. Diuretics can help treat the symptoms of fluid retention but don't fix the problem. Some Diuretics can lower a potassium level that is why you have a potassium supplement.
Your problem defiantly needs though investigation.

 

[Nancy]

What you are experiencing could be symptoms of severe congestive heart failure which can happen with pre-surgery valve people. Joe has been there a few times. He finally got to the point that he could only sleep sitting upright on the sofa.

Please call your doctor and have him/her do an exam to see what is happening. You also should not be doubling up on your diuretic without the doctor's approval. It might seem like a benign thing, but your kidney function could get out of whack very rapidly, and throw you into kidney failure, the potassium level also. Potassium has to be just right, not too high or too low. Both can be a problem.

So go and get a professional opinion and get some labwork done.

 

[Der Biermeister]

DB
This sounds very similar to the severe heart failure I went into caused by AI and AR in the week before my AVR. Fluid retention and difficulty laying down and sleeping. My O2 levels were also low 90's. I was treated with a variety of drugs to get things in a condition were I was able to have the AVR.
Lying down normally increases blood pressure in the lungs however this is only a problem if other things such as heart failure are present then breathing becomes extremely difficult. Diuretics can help treat the symptoms of fluid retention but don't fix the problem. Some Diuretics can lower a potassium level that is why you have a potassium supplement.
Your problem defiantly needs though investigation.

OME - thanks for your reply. In a few minutes, I am going to go to the hospital to retrieve a copy of my echocardiogram results performed one week ago. This should answer a lot of questions I have as well as allow me to talk intelligently about what is going on with the various technical terms. My O2 levels are coming up just a bit compared to last Friday. Then, it was 95 while sitting taking fairly good breaths and 90 while walking Two days ago, I was 95-96 while sitting with normal breathing and 92 while walking. While in the hospital, my docs and nurses also knew of my difficulty in sleeping laying prone. So -- that is not new to them. My doc discussed the results of the echocardiogram with me, and pretty much ruled out CHF.

 

[Der Biermeister]

What you are experiencing could be symptoms of severe congestive heart failure which can happen with pre-surgery valve people. Joe has been there a few times. He finally got to the point that he could only sleep sitting upright on the sofa.

Please call your doctor and have him/her do an exam to see what is happening. You also should not be doubling up on your diuretic without the doctor's approval. It might seem like a benign thing, but your kidney function could get out of whack very rapidly, and throw you into kidney failure, the potassium level also. Potassium has to be just right, not too high or too low. Both can be a problem.

So go and get a professional opinion and get some labwork done.

Nancy - thanks for your reply. Please see my last post to OME a few minutes ago, as I give a bit more information. You asked me to call my doc and have him do an exam. Did you realize that I had just had all that done late last week? Also, I have an appointment to see him in 6 days. That was the earliest I could get. My chief complaint right now is a continuation of this sleeping difficulty -- which really is no different than when I was in the hospital. I will also report back to you with my echo results this afternoon.
Thanks
DB

 

[Der Biermeister]

Ok - here are the echo results:
Left Atrium - normal
Left Vent - normal size. There is concentric LVH. There is vigorous systolic function. The LVEF is estimated to be 65% (someone tell me if this good?)
Right Atrium - normal
Right Vent - normal
Mitral valve - structurally normal with normal leaflet motion and normal doppler flow
Aortic Valve -- Normal leaflet motion with mild to moderate AI. The aortic root does not appear to be enlarged.
Tricuspid valve -- structurally normal with normal leaflet motion. Mild tricuspid regurgitation. By doppler there is mild pulmonary hypertension with and estimated PA pressure of 40 mmHg. (someone explain this significance please)
There are no effusions and no masses seen.

Conclusions:
1. Aortic valve sclerosis with mild to moderate, probably moderate AI.
2. LVH with vigorous systolic function. There is no evidence of any diastolic dysfunction by Doppler.
3. Mild Triscuspid regurgitation
4. Mild pulmonary hypertension



For some reason, this report sounds more encouraging than the way my body feels. I still don't believe this can be turned around with meds, and that to get somewhat back to normal I will have to undergo AVR.
Thanks you all for looking and commenting on this.
DB

 

[Mary]

All in all, the valves seem to be in good shape. I don't know about concentric LVH, but others will.
It might be that your problems are originating from an area other than the valves.

 

[tobagotwo]

Left Ventricular Hypertrophy - thickening of the walls of the left ventricle. Concentric means that it is a balanced "bulking up," which is a good thing, as opposed to a lopsided one. It happens because the heart is working harder to keep the blood moving forward, due to the aortic valve leakage (aka insufficiency or regurgitation).

65% is in the normal range, but is probably a sign of your heart working harder to pump the blood, inthat part of what it pumps keeps leaking back. 55% would be a more usual number. Depending on the medical site, 70%-75% is the warning track on high EF.

The EF is how much (percentagewise) of the blood that enters the ventricle is pumped out by the heart each beat. When stressed or atheletically trained, the heart tends to push more out with each beat. The problem with it when valve problems are present is that it usually means that the heart is beginning to enlarge (bulk up, like any exercised muscle), and when the heart enlarges enough, it paradoxically becomes inefficient, due to its own size. You're not near that position at all yet, fortunately.

Best wishes,

 

[Der Biermeister]

Left Ventricular Hypertrophy - thickening of the walls of the left ventricle. Concentric means that it is a balanced "bulking up," which is a good thing, as opposed to a lopsided one. It happens because the heart is working harder to keep the blood moving forward, due to the aortic valve leakage (aka insufficiency or regurgitation).

65% is in the normal range, but is probably a sign of your heart working harder to pump the blood, inthat part of what it pumps keeps leaking back. 55% would be a more usual number. Depending on the medical site, 70%-75% is the warning track on high EF.

The EF is how much (percentagewise) of the blood that enters the ventricle is pumped out by the heart each beat. When stressed or atheletically trined, the heart tends to push more out with each beat. The problem with it when valve problems are present is that it usually means that the heart is beginning to enlarge, and when the heart enlarges enough, it paradoxically becomes inefficient, due to its own size. You're not near that position at all yet, fortunately.

Best wishes,

Thank you Bob for your answers. Let me ask a couple more. About 15 years ago, I had an echocardiogram done which showed suspicions of LVH. Been on Zestoretic (ACE plus diuretic) ever since, plus a calcium channel blocker for bp. Does this mean I probably had AI even back then and only now have progressed to having symptoms? What role is my "mild pulmonary hypertension" playing here?

 

[Nancy]

Joe has pulmonary hypertension. His was severe, and after being on Tracleer for two and a half years, it is now in the mild category. Once you see that in your test results, you have to pin down your cardiologist for his opinion on what should be done.

Some PH is secondary and caused by valve and other issues, and once the underlying condition is taken care of, it resolves.

Other cases are primary, and that was true of Joe's case, even though he had valvular and other heart a lung problems.

His former cardiologist allowed it to continue on until it became severe, and almost cost him his life. We found a PH specialist and he finally got treatment.

I do not want anyone else to have to go through what Joe did.

So bring this up with your cardiologist and ask if it needs to be further diagnosed by a PH specialist. Not every cardiologist is well-versed in PH, not every pulmonologist either. It is a rare disease, and most cardiologists do not see a case of it in their career. PH specialists see it all the time, are up to date with treatments and testing, including clinical trials.

Even when it is mild, it should be followed and if need be, medicated.

PH is a nasty and progressive disease.

An echocardiogram is not a good diagnostic tool for PH. The right heart cath is the gold standard for diagnosis. Echoes can vary either way.

For further info. about PH here are some links:

http://www.phassociation.org/
http://www.phassociation.org/Message_Boards/main.asp?board=1
http://www.chfpatients.com/ph.htm

 

[Der Biermeister]

Joe has pulmonary hypertension. His was severe, and after being on Tracleer for two and a half years, it is now in the mild category. Once you see that in your test results, you have to pin down your cardiologist for his opinion on what should be done.

Some PH is secondary and caused by valve and other issues, and once the underlying condition is taken care of, it resolves.

Other cases are primary, and that was true of Joe's case, even though he had valvular and other heart a lung problems.

His former cardiologist allowed it to continue on until it became severe, and almost cost him his life. We found a PH specialist and he finally got treatment.

I do not want anyone else to have to go through what Joe did.

So bring this up with your cardiologist and ask if it needs to be further diagnosed by a PH specialist. Not every cardiologist is well-versed in PH, not every pulmonologist either. It is a rare disease, and most cardiologists do not see a case of it in their career. PH specialists see it all the time, are up to date with treatments and testing, including clinical trials.

Even when it is mild, it should be followed and if need be, medicated.

PH is a nasty and progressive disease.

An echocardiogram is not a good diagnostic tool for PH. The right heart cath is the gold standard for diagnosis. Echoes can vary either way.

For further info. about PH here are some links:

http://www.phassociation.org/
http://www.phassociation.org/Message_Boards/main.asp?board=1
http://www.chfpatients.com/ph.htm

Nancy thanks for the info on PH. You mentioned a right heart cath for a better diagnosis. The first test they ran on me after going to the ER was a heart cath to check to see if my two stents were still functioning. The doc said all was well with what he saw. But I will ask specifically about this PH.

 

[Nancy]

Did you have a RIGHT heart cath? Most caths done are LEFT heart caths. It is the RIGHT heart cath that is used for PH.

Stay on top of it and get copies of every test they run on you so you can monitor for yourself, if PH is getting worse. This is a double check that you should be doing, no matter what your doctor says.

 

[Der Biermeister]

Did you have a RIGHT heart cath? Most caths done are LEFT heart caths. It is the RIGHT heart cath that is used for PH.

Stay on top of it and get copies of every test they run on you so you can monitor for yourself, if PH is getting worse. This is a double check that you should be doing, no matter what your doctor says.

Nancy - I am embarassed to admit I don't know. I assume it probably is a Left heart cath if that is what is normally done. Getting the record from the hospital is a bit of a chore this late in the day on Friday. It may have to wait until Monday as the Medical Records section may be closed on the weekends. But I am guessing anyway that it won't provide the info (right cath) that you need. I see my cardiologist next Wednesday, and that question is going on my list.

Thanks
DB