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Author Topic: Tell me about Congestive heart failure/complications from stress and insomnia ?  (Read 91397 times)

Offline Andrew K Fletcher

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Karen, Purchase a dehumidifier and leave it running at night while you are on the inclined bed. The dry air in your room will remove all of the fluid from the lungs providing you close all of the windows and vents.

Andrew

Ok.. I need some advice from any of you Doctor friends..? My cough is really bad which is normal for my condition.. My doctor has said taking my meds is the best way to keep fluid away out of my lungs.. we are trying very short walks and tons of rest.. But regaurdless of the diuretics ace inhibitors beta blockers etc.. My lungs seem to be saturated with fluid. I am sleeping rather sitting up in a chair to breath better at night. I know this is normal for my condition.. my question is .. are their other methods to help relieve this cough and ease it so I can sleep?  The doctors have only sat me up to rest, I am not to lie flat.. But at this point even sitting up I still feel like I am drowning, coughing up and gurgling out frothy clearish white fluid all night long and during most of the day! Is there another position or option to help this.. It is scaring me and also my children..Not to mention the Dog.. who feels a need to be right up in my face every time I cough whining and licking me upside of my head!!!

Any suggestions would be greatly tried and appreciated...Thank you...

OH yeah am Having horrific heartburn but cannot take an antacid with my pills.. any suggestions there?
 

Offline Karen W.

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Thanks Andrew! I will try that! I am getting no benifit from my apnea machine because I cannot use it cause I cannot breath normally with all the fluid... The machine seems to make it worse to boot.. the fluid that is. It has a humidifier that blows straight into my nostrils...
 

Offline Karen W.

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OK I have just talked with Stanford University where I am going for the quadrillionth second opinion etc.. She says their will be a Doctor for the heart aneurysms, and also doctors who specialize in congenital heart problems as well as heart failure and aorta regurgitation etc.. etc...I will know more in an hour.. she had to round up all the doctors to make the appointments with.. She said they will work as a team also if The surgeries can be risked.... Likely they will repair all at once if possible to repair any!
 

Offline Karen W.

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Iko and all.. I finally have a date with Stanford.. everything was set today. I will leave on the morning of the 6th and of august and stay in a motel.. my appointment is for 1:00Pm on the 7th of august! The woman who called coerdinates everything and was very up beat and had a real good attitude made me feel much better about what is happening. She sounded so nice and hopeful and said I will be in the best hands in good care. She said that by the time They were done with me that I was going to know more about my body and the things that are happening then I ever thought was possible. She was very optimistic and said they are highly skilled specialized doctors in Marfan Syndrome and aneurysms .. tells me it is genetic and we will get this all fixed and be better able to get to the bottom with a more conclusive diagnosis and some fixes for the problems..

I am very excited and nervous.. but glad to finally feel like maybe this is a step into the right direction! YAYYYYYYYYYY!

I watched a surgery performed to day to repair a problem like mine it took a long time.. but they say if they can fix this it will make my future outcome better.. of course no guarantees but very hopeful.. Thats what I need for sure...

Can any one tell me some more about this Marfan syndrome.. a connective tissue disorder that is genetic.. what are the odds that I have passed this on to my children without knowing it?

I guess they will also be fixing valves that are more then just a little leaky.. they are bad..

could you tell me about the mechanical valve verses reusing my own.. that is if it is not too far damaged..? I know I have read about it but my head was swiming still is.. what are the options again..?
 

Offline Karen W.

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OH yeah I will be seeing Dr. Joshua M. Spin, M.D., Ph.D.. At Stanford Marfan Center in California.
 

Offline Karen W.

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Well Here is my latest labs from Stanford.. Still testing... what do you think?

 
   

Ref. Range
   

9/4/2008 5:23:00 PM

WBC
   

Latest Range: 4.0-11.0 K/uL
   

12.1 (H)

Hemoglobin
   

Latest Range: 11.7-15.7 g/dL
   

13.6

Hematocrit
   

Latest Range: 35.0-47.0 %
   

39.7

Platelet count
   

Latest Range: 150-400 K/uL
   

310

MCV
   

Latest Range: 82.0-98.0 fL
   

88.0

RDW
   

Latest Range: 11.5-14.5 %
   

15.3 (H)

RBC
   

Latest Range: 3.80-5.20 MIL/uL
   

4.52

MCH
   

Latest Range: 27.0-34.0 pg
   

30.0

MCHC
   

Latest Range: 32.0-36.0 g/dL
   

34.1

NEUT, %
   

No range found
   

76.8

LYM, %
   

No range found
   

16.2

MONO, %
   

No range found
   

4.3

EOS, %
   

No range found
   

2.3

BASO, %
   

No range found
   

0.4

NEUT, ABS
   

Latest Range: 1.7-6.70 K/uL
   

9.28 (H)

LYM, ABS
   

Latest Range: 1.00-3.00 K/uL
   

1.96

MONO, ABS
   

Latest Range: 0.3-0.95 K/uL
   

0.52

EOS, ABS
   

Latest Range: 0.05-0.55 K/uL
   

0.28

BASO, ABS
   

Latest Range: 0-0.25 K/uL
   

0.05

ESR, (manual)
   

Latest Range: 0-20 mm/hr
   

40 (H)

IgG Antibodies
   

Latest Range: 0-23 GPL
   

4

IgM Antibodies
   

Latest Range: 0-11 MPL
   

1

Fibrinogen
   

Latest Range: 206-426 mg/dL
   

550 (H)

Prothrombin Time
   

Latest Range: 11.6-14.2 sec
   

13.2

INR
   

Latest Range: 0.9-1.1 INR
   

1.0

Part. Thromboplastin Time
   

Latest Range: 24.4-35.5 sec
   

28.6

DRVV screen
   

Latest Range: 31-44 sec
   

39.9

DRVV Confirmation
   

Latest Range: 30-38 sec
   

N/A

LA Ratio
   

Latest Range: <1.25
   

N/A

DRVV Interpretation
   

No range found
   

SEE NOTE...

Interpretation
   

No range found
   

No PTT inhibitor demonstrated using lupus sensitive reagent.

Interpreted by
   

No range found
   

J. Zehnder, MD...

C-Reactive Protein
   

Latest Range: <0.9 mg/dL
   

3.2 (H)

Complement C3, Serum
   

Latest Range: 86-184 mg/dL
   

174

Autoantibodies to U1RNP
   

No range found
   

<0.2...

ANA Result
   

Latest Range: Negative
   

Negative

Ana Interpretation
   

No range found
   

Screening for ant...

Result
   

Latest Range: Negative
   

Negative

Interpretation
   

No range found
   

Screening for ant...

Scl 70 Ab, IgG, Serum
   

No range found
   

<0.2

SS-A/Ro Ab, IgG, Serum
   

No range found
   

<0.2

SS-B/La Ab, IgG, Serum
   

No range found
   

<0.2

Autoantibodies to SM
   

No range found
   

<0.2...

Autoantibodies to Jo 1
   

No range found
   

<0.2

 

Offline Karen W.

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Well, By the way, I do not have Marfan syndrome, I do not fit their guidelines..

These tests were from cardiology as well as immunology dept. They checked for lupus for the umteenth time and they checked for Leukemia etc... These tests were done again on the 4th of December.. Have a battery of tests left to do in November.. three months from these last tests.. Liver tests etc. Had more done last week also.

Because of the Aortic aneurysms, other heart problems, and my ill health as far as weight infection etc, etc,& undiagnosed whatever.. I am in a rather high risk area for having my aorta replaced safely and coming through the surgery OK. So They have proposed that I undergo a Gastric bypass that will be monitored closely by Heart surgeon to keep my Blood pressure stable within a certain range so that the aneurysm's will not rupture.. or become a problem... They are in hopes that getting the weight down fast will aid the blood pressure and hopefully my weight won't be against me when the aneurysms hit 5 and I need the aorta and new valves.. He said it will way increase my chances of survival as well as be beneficial for all the other problems that are happening...
In my current health I am very restricted to the amount of exercise I can safely do so no matter what I do, I am struggling to loose any more weight.. Having lost the 116 lbs previously then getting sick..This last year has found me very incapacitated and stuck mostly inside and without energy, strength, or ability to move around much..

I have been on Doxycycline now coming up on about 9 months treating Respiratory problems I will stop treatment this October and hopefully enjoy some time feeling better.. I do feel some better a bit more energy but still have to pace myself..

Hopefully this will help.

I am nervous but have agreed and now need to take some pre-operative weight off again.. to allow for my insurance to cover everything!

I have avoided this surgery three years ago to do it myself and started by using the Zeta cap as a tool which helped me a lot until I was able to better judge my portion size and it helped me not feel so hungry all the time.
Then for over a year I was able to hold my own and just keep my weight down without help.. It felt wonderful.. then I had my Mini Stroke which set me back, then I got really sick during that period and went down hill from there.. I have since gained back about half of my weight..... I am disgusted and angry about that!

I feel like I failed and I did. I do know that, when I am well, I can maintain my weight.. and lose it..and keep it off!  The problem being that I started too late three years ago and now I am riddled with health problems that are being exasperated by my excess weight! The problem now is that I am very sick and getting the weight off with only being able to do very little physical exercise. It is extremely frustrating and very hard.. I can't work or be around the children without getting sick and am unable physically to do the job anymore. So Now I have agreed that this is an emergency to see if I can get the weight off before the aneurysms need more attention or dissect.(Rupture)

So I am starting over with the hope that I will win this time and do better. I am scared but At least finding out some of the underlying problems and working on the ones I can work on will at least keep me busy and hopefully alive for a lot longer Then I have even dreamed of.. So As much as I HATE HATE HATE surgery especially this one I really don't have a choice anymore...I could take my chances and say no surgery and draw a straw before the surgery for the aorta... but at least if I take this choice at least its a choice.. do I want to take a chance a draw of the straw or do I want to really give myself a fighting chance!

I am going to take the choice and try the bypass.. Hell I always wanted to be thinner and pretty!  It will take a miracle but I think I am due one eh?

 I will put some posts in the Zeta thread soon but not for the Zeta you know it is for other weight loss methods! So I think its time for a new one eh?

I have been looking at the starvation diet that the Bariatric surgery will require and Yikes it looks really depressing for a while! LOL Not to mention
undernourished as far as being able to get the proper nutrition in that tiny newly partitioned stomach...vitamins vitamins vitamins.. and balance....

Will post soon with updates!

 

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