gasping, swelling, fatigue, pvc's, chest pain

[ugabug]

my wife's health is really going down hill lately. over the past year, she has been experiencing problem and not able to find a doctor with any answers. everything comes back ok. she has overwhelming fatigue that is very unlike her, pressure or burning in her chest, wakes up during the night choking or gasping for breath, makes a gasping sound like a seal occasionally during the day, having all over swelling but excessive in the legs torso and neck, and has about every 30 beats of her heart an odd skip or stopping of the heart. here's what we know.
1) heart stess test had to be stopped due to excessive pvc's
2) heart ultrasound was fine
3) red blood count was low (11)
4) she has gotten pale looking
5) gained weight, but has not changed eating habits
6) gets exhausted with mild effort
7) voice gets real raspy with fatigue
8) wheezes when fatigued
9) gets lightheaded when she exerts herself

any ideas that would help her better explain what's going on to a doctor would help. i think she tries to tell them everything out of desperation and just overwhelms them.
thank you,
steve

[LivingInHope]

I'm glad you know the Lord!  Perhaps you and your church could pray together that you find the right doctors to help you and your husband.  God delights in answering the prayers of His people!  

May I offer a suggestion when you find that new primary care doctor as someone who is viewed as a complicated medical case?
  I'd lay the most troubling of your symptoms on the doctor first, along with your top three or four first priority goals of what you want him/her to do.  And then make a follow up to discuss some of your lesser concerns, but that may have a tie-in with your biggest problems.  Doctors often don't want to be overwhelmed with too much at once.

I'm sorry it's hard for you at night.   You may have abdominal ascites, where fluid collects in the peritoneal cavity (in your abdomen).  Are you trying to do a no salt diet and elevating your feet above the level of your heart whenever you are not standing? See private message for more info. on abdominal ascites.

[ugabug]

Thank you for explaining it so that it is easier for me to understand.  My husband and I are Christians as well.  I would love to find a Christian Doctor but it seems to be something which is a no-no to ask these days.  Anyway,  I have not had any blood work done.  I  have had an ultrasound to check the size of my heart.  I have had the 24 hour monitor which I believe checks to see if the impulses from the brain to the heart were okay and they were.  The stress test I took was I guess inconclusive as my pvc's were so bad that it stopped the counter.  The Doctor still did not seem too concerned about this as he said that thousands of people are walking around with pvc's.  He did not even want to put me on any medication for it because he said that those on medication had more problems and shorter life spans than those who didn't go on medication.  I believe that is pretty much all the heart tests that I have had.  My swelling was not bad back when I went to this Doctor  and I cannot remember if I was having the gasping then or not.  Now, my stomach has become quite large and laying down brings on chest pressure, sometimes wheezing, and constant urination.  I hate going to bed because it is so much worse.  I went to a Gastroenterologist about the stomach swelling and with taking no tests he just said that I had an allergy or sensitivity to milk products.  He did not seem at all concerned and didn't seem to have the time to address my concerns so I did not really pursue it.  I absolutely hate going to
Doctors because they are generally rude, dismissive or stumped and not interested in going that extra mile.  So thank you very much, for just showing that there are some out there who actually care.  Hopefully with the new start I will come up with some answers and help.  
Blessings.

[LivingInHope]

No, I'm not a doctor.  I once went through nursing school as a teen and graduated about twenty years ago.   I am just a disabled Christian with an interest in medical things and helping people. The book I mentioned was given to me by a neighbor at the time I was in vocational nursing school, I believe.  She was an RN.  I have often looked at that book for myself.

Yes, it is important to find a doctor willing to take the time to listen.  And, if he/she is stumped, it helps to have one who is willing to refer to specialists and even do research themselves to try to help you.  (See PM.)  

I'm sorry it was difficult for you to understand a lot of what I posted.  Perhaps I can summarize by saying there are many different serious medical reasons that your red blood cell count can be low and your doctor should be willing to try to rule out various reasons and try to come up with the correct diagnosis as to what is causing your red blood cells to be depleted.

A couple of reasons I could think of for swelling are kidneys failing (and your red blood cell count could be affected by this as well) and congestive heart failure.  I wondered if you had gotten a GFR or glomerular filtration rate calculated- it's based on bloodwork done to see how well your kidneys are filtering out waste products in your body.  I wondered too what other tests have been run on you... did they try to check your heart function with other tests after you were not able to complete the stress test?

As I said I'm not a doctor, and may I say I hope you find more helpful, competent & thorough doctors who aren't afraid to do whatever it takes to help you the best way they can.

[ugabug]

Hi,  Thank you for your comments.  My husband told me that he had written in and he asked me to read what he had written and your reply to it.   First,  I have more symptoms than what he has listed but he thinks that giving them all is part of the reason that I cannot get a Doctor to give me a diagnosis. Myself, I don't see how I can get a correct diagnosis without listing all my symptoms, but I digress.  I appreciate you taking the time to comment, and we shall surely take your advice as to writing it down as my husband did and taking it to a Doctor.  We have decided to start all over by finding a new Internist and going from there.  All new Doctors.  Most of  the ones I have seen just do not seem to care and get rude and frustrated with me when I ask questions .  The ones who have not been rude just seem to be stumped.  
    I do not know if you are a Doctor, but neither my husband nor myself could understand most of what you wrote,  I sometimes think that our lack of knowing medical things is part of the issue we have in getting and receiving help for me.   I hope that this time I can find a Doctor that shows the type of concern that you have.
     Thank you again.

[LivingInHope]

Putting it down succinctly on paper like you just did in your post and handing it to the doctor and asking them to please read it would be great!  Some docs don't want to read, but if she says it would take less time for him/her to read the summary first, hopefully they'll read it anyway.  Also, on the paper she may want to list if she has any ideas of what kind of testing she wants & what her goals are.  

What tests besides a stopped heart stress test & RBC have been done already? I'm guessing the RBC was 1.1 rather than 11.  I have a book by Frances Fischbach, second edition of A Manual of Laboratory Diagnostic Tests.  It is very old, but it says decreased RBC implications are:
"1. Anemias
Due to
(a) Decreased red blood cell production
(b) Increased red blood cell destruction
(c) Blood loss
(d) Dietary insufficiency of iron and certain vitamins, especially B 6, B 12, and folic acid, which are essential in the production of erythrocytes

2. diseases of bone marrow function
(a) Hodgkin's disease
(b) Multiple myeloma
(c) Leukemia

3. Hemolytic and pernicious anemia
4. Lupus erythematosus
5. Addison's disease
6. Rheumatic fever
7. Subacute endocarditis"

(endocarditis being an inflammation of the inner lining of the chambers of the heart  and the heart valves or endocardium)

Also, what is her GFR?  I believe if the kidneys are failing, erythropoietin and thus erythropoiesis or red blood cell production can be adversely affected and also, kidney failure can cause swelling.  

Congestive heart failure also can cause swelling too.