[Karen W. (OP)]

I am not a doctor.. so i am not in the guessing market.. as that just makes me a nervous wreck.. but this CFS autoimmune  is interesting.... I dont know what it is quite yet... read some but will talk to the doctor.....on the 22nd and have somemore blood
tests in the morning tomorrow as something is wrong so she wants tests first thing in the morning....have been awful for a couple days... my pills are not digesting and my pain level is out of control....and my blood pressure is going bup and down... will update later!

[Bizzy]

Let me put it another way. Have your doctors ever talked about autoimmune disease as being the cause of your heart problems ?

[Karen W. (OP)]

Let me put it another way. Have your doctors ever talked about autoimmune disease as being the cause of your heart problems ?

 no she has not.. neither has the cardioogist. She has just said at the last appointment that it was playing a part in me being so sick!  but not the reason fo the heart problem.. but probably not helping it. I have another oppointment next week... we will talk then about it.

[Bizzy]

I think your heart inflammation problems might have been caused by an autoimmune attack rather than infection. It is easy for people and doctors to think infection. Infection tends to be the cause for many illnesses.
Also if doctors think infection then they have an easy tool they can employ, antibiotics. This provides satisfaction to both the doctor and the patient that something is being done. If they think autoimmunity then things start to get very tricky. Autoimmunity is very difficult to test for and address.

[Karen W. (OP)]

new iodined cat scan done last week or the week before in the emergecy room says that I am in heart failure.   My liver is not able to proceess things kidneys are.still not stable.she put me back on the potassium....because I am low...

what does end stage mean? Is it what I think?
They said they were wrong the first year.. then I thought... well maybe thats good and there might be something else more treatable and now more tests prove they were right the first time...but now it has progressed a lot farther...
so ....even if I qualify for the transplant.. they only do a few a year because.. heart donors are hard to come by...of course ....I have to go.....will post again soon when my head is clear.

[neilep]

If they got it wrong for a whole year then they owe you big time to fix you NOW !

Please ring them, call them, write them, harass them till you get some appropriate responses as to what they are going to do next !.....this they owe you if they have messed up !!

I think it's safe to say that we are all thinking of you...............

[Carolyn]

Karen - I'm at a loss for what to say.  This is maddening!  I cannot imagine what you're going through.

I'm with Neil.  Do whatever you have to do.....be a thorn in their side, a pain in their rearends...whatever it takes for them to take action to effectively help you!

You are in my prayers and my thoughts. 

[that mad man]

I can only echo the sentiments above and I hope you rest well.

[Karen W. (OP)]

Thank you all... I appreciate all your support. I am making every effort to make sure they check and recheck everything.. I am not sure what I am supposed to to next.. She did not say a whole lot more.. but then again, I don't think I could handle any more anyway.. They did some more tests today and blood work again and she wants to do more tests before she settles .. she said she doesn't like all of the different verdicts coming in from Cardiologist and discrepancies at hospital so she is going for more testing as well she says she is sending my cardiologist guy  a courtesy letter to do something or we go to the city probably Stanford for more opinions.
In the mean time.. we are decreasing water to 2 quarts or under to stop the fluid overload .. I already do the under two grams salt thing... They have had me drinking tons of liquids to flush kidneys when they should have decreased it according to the hospital.. but she said my liver and kidneys are not ridding themselves properly of toxins such as the ibuprofen which had built up in the liver..so they switched pain meds.. to a norco, cut my meds back to 12..

DOXYCYCLINE 100MG( ANTIBIOTIC) 1 CAPSULE TWICE DAILY

1/2 TEASPOON OF YEAST DISSOLVED IN 1/4 CUP WATER OR JUICE.. TWICE DAILY

KLOR-CON 8 MEQ (POTASSIUM) TAKE TWO TABLETS DAILY

HYDROCODONE/APAP 5/500 1 OR 2 AT BEDTIME

HYDROCODONE/ APAP 10MG/325MG (MALLINKRODT) [GENERIC NORCO] TAKE 1 PILL EVERY SIX HOURS AS NEEDED FOR PAIN

ASPIRIN 81MG 1 DAILY

METOPROLOL 100MG ER 1 DAILY

LISINOPRIL 10MG

TRIAMETERINE/HCTZ 37.5/25 CAPS 1 DAILY

FUROSEMIDE 40MG TAB ONE A DAY

LEVOXYL TAB 150MCG RXPAK 10# ONE DAILY

CITALOPRAM 2OMG  ONE DAILY

OMEGA-3 ESSENTIAL FATTY ACIDS ( FISH OIL 1000MG)4 DAILY

THAT IS DOWN FROM BEFORE I HAVE DISCONTINUED SEVERAL MEDICINES OVER THE LAST MONTH.... REVISITING  MORE OR LESS SHE DOESN'T KNOW YET..

[another_someone]

Thank you for the update - at least we still know there is hope (both that you have not given up, and that your doctors have not given up - so hope remains).  As long as you keep posting, we will know you are still fighting.

Have they thought of dialysis to help the kidneys for the time being?

[Karen W. (OP)]

Thanks George... I am not sure what I am doing right now.. but posting sounds good. I went to the bird santuary today after the hospital and sat there a while.. and watched all the people walking their dogs and themselves.. the sun finally came out and it was warm with a breeze... Rob took the dog for a big walk and gave me some space.. I laid way back in the seat and just played on my phone,I cracked the window to feel the breeze... and the warm sun on my skin... it felt nice.. I have been so bloody cold lately.... I must say... I am awful worried about Nathan.. but more worried about weather I will get to see him again.. He won't be home till September.. Thats along time away.. the way I have been feeling...  You know George, she can't even tell me how long?? You would think for as long as it has been around she could guess.. Early stage  they said  sometimes about 6 years if the patient does well with treatments .. she said everyone is different and it depends on where you are and what kind of damage is already done.. There are many variables.. so she would not be able to say... It seems I have a second aneurysm located now on the descending side which since december has grown from 2.0 to 3.6 in 4 months.. the ascending one is still about the same, 4.5.. so I don't know.. they have noted more chages in the electro cardiogram as well.. more left ventricle trouble.. meaning it has gotten worse and now there is a problem with some kind of right ventricle problems as well..

 a few tests were abnormally high.. she said something about lesions.. but I don't remember where as I was too dumbfounded..

Will see next time.. going to see a second surgeon about the left arm on the 1rst.. Second opinion.. then if its the same a new Neurologist to work with my insurance!

[Karen W. (OP)]

No dialysis as of yet.. she has been managing it with meds and wholisticly first is that the proper term... trying different things.. to try to keep it in range

It has not quit yet and she is hope ful that we can manage it.. or at least that is the impression she gave me.. so I am hoping the same...

[Bizzy]

I think you are taking an awful lot of medicines and wonder how you can be sure that they are all having a positive effect. Citalopram raises blood serotonin levels which can be dangerous for your heart valves. Omega 3 supplementation is suppose to be good for the heart but I was getting heart symptoms on very large doses. So I think high dose omega 3 might be a double edge sword and might not be good for pre-existing heart conditions.
I recommend that you try and trim off even more drugs and stay on only the most essential, working with your doctor.

[Karen W. (OP)]

Those are the most essential! There were many more before.. we have weeded many down due to reactions and side effects etc.... let me tell ya.. the results of not taking them are really unpleasant to say the least.. it only takes me a few days of missed meds to land my butt back in the hospital again in worse condition.. I am working with several Doctors..... Looks like one will either be revisited or another opinion will be had in southern California!

[Karen W. (OP)]

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?

[Andrew K Fletcher]

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?

[Karen W. (OP)]

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...

[Karen W. (OP)]

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!

[Karen W. (OP)]

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..?

[Karen W. (OP)]

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