breathing is a good thing

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Butterflake
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Date Joined Jun 2006
Total Posts : 1650
   Posted 7/26/2013 2:57 PM (GMT -6)   
Hi Everyone. I know I've mentioned this before, but hey what's another thread? Yes, I'm SOB, but after lots of pulmonary and cardiac tests the docs have found the reason (contrary to the belief of many it has nothing to do with a female dog).
 
I have diastolic heart failure. It's not nearly as bad as it sounds, but hearing the news still put me in an awful flare. I've come to grips, understand, and only need to make a few lifestyle changes. I now take lasik diuretic once or twice a day depending how out of breath I am, watch my salt intake and weigh myself daily to make sure I'm not retaining fluid. I'm also supposed to watch my fluid intake, but when the cardiologist said that, I said I have Sjogren's so that's not going to happen. He understood. But I am now trying to use products occasionally that quench my thirst, but don't add fluid. Xylitol gum and candy plus my usual Biotene products.
 
So my wacked out immune system aka lupus, has attacked my lungs, brain, and now heart. My lungs are currently doing a great job and my brain is what it is. My heart will not get any better, but if I'm careful I can ease the diastolic failure progression. If anyone else in HealingWell land can relate, let me know. Love, Butterflake
Lupus '05, Sjogrens, fibro, major depressive disorder, CNS problems, GERD, colitis, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 7/26/2013 3:27 PM (GMT -6)   
 
Hi Donna,
 
       I can relate somewhat to your heart issues.  I have been dealing with Atrial Fibrillation these past two years and it has forced me to make some lifestyle changes in order to manage the problem.  Those, coupled with a beta-blocker have helped, but it has made me somewhat unhappy because I already made so many other changes due to the "regular" Lupus issues, that another one swept me up into depression!!  I am better now and adjusting, especially to the medication.  The Bet-blacker makes me a little dizzy and tired for about 2 hours after I take it.  That's hard on a fairly active person like myself!!  Having a sense of humor about this journey and finding common ground, like in this forum, have really helped.  It's good that you found out what is going on, but I am sure it's been a different kind of adjustment.  I am sending you warm thoughts and a ((((((((((((((((((HUG))))))))))))))))))).
 
Laura

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/26/2013 6:07 PM (GMT -6)   
Well, that's frustrating.
I hope you get this balanced out and feel better soon.
I take two lasix a day. I feel like I spend most of my day in the bathroom. LOL!
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 7/26/2013 7:52 PM (GMT -6)   
Hi Laura and Joy. Laura I seem to recall that you have A fib, but regardless now you not only have my attention, but my empathy as well. It's so hard to hear that one has heart problems. Prior to lupus I was a runner for 20 years, then took up swimming. I always felt my prior exercise was what kept my lungs and heart working well even with lupus. I was very surprised the first time I had pneumonia. Well, I was surprised two months later when I came out of the resulting coma. From what I understand I didn't have much to say during those two months. I've never been on a beta-blocker, but it sounds like a real pain. Thank you so much for the warm fuzzy and hugs. Back at ya girl friend.
 
Joy you really must have lots of potty breaks! I take one lasik when I wake and my cardiologist told me to only take another if I become out of breath during the day. He wants to keep me from developing a tolerance if he can. Do you have difficulty breathing too, or do you have edema?
 
Thanks for the replies Ladies. Love, Donna
 
 
Lupus '05, Sjogrens, fibro, major depressive disorder, CNS problems, GERD, colitis, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 7/26/2013 10:53 PM (GMT -6)   
Hi Donna, I can relate...I have MCTD and left ventricular diastolic dysfunction, concentric left ventricular hypertrophy due to hypertensive heart disease. I also have mild pulmonary hypertension. A beta blocker and a calcium channel blocker has helped get the hypertension under control. I never had any blood pressure concerns or heart issues until having an autoimmune connective tissue disease.

Last August the lower lobe of my right lung was removed because of cancer...adenocarcinoma. I remain active, exercising on a daily basis and have a good life in spite of my conditions. Taking one day at a time really helps me and focusing on my blessings help too. :) I'm blessed with a great team of specialists.

Sending gentle hugs and best wishes!
Robin
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/27/2013 12:12 AM (GMT -6)   
Hi Donna,

I'm sorry that you had to hear that your lupus has now attacked your heart. This stupid disease is just so unfair to us. (((((( hugs)))))) I wish I could say everything will be fixed and all better, but you know I can't.

I've had issues with my heart from the get go. I'm constantly battling pericarditis, and ALWAYS have a small amount of fluid collected between my heart and pericardium. I have several pericardial effusions a year and am just waiting for the day that I need a window. I've had mitral valve prolapse since I had rheumatmatic fever as a kid. I also have an extended QT interval due to one of my pain medications and finally I have a severely enlarged heart from my pulmonary hypertension.

I totally understand how you are feeling, hearing that you now have a heart condition. I'm truly sorry sweetie. I also, take lasix everyday to help with the fluid retention I have. I take Viagra three times daily for the pulmonary hypertension, and my cardiologist was mentioning that we may want to consider removing my pericardium from around my heart. I do go to pulmonary rehab twice a week, it does help some.

The best advice I can give you is to take your medication as directed, get exercise ONLY IF, your Doctor approves it. Try to eat healthy and DON'T LET THIS BEAST BEAT YOU DOWN, NEVER STOP FIGHTING!

You have my number and email if you ever need some support just reach out and I'll be there. I wish you would get better with treatment. Hang in there Donna, you went through a really hard time and pulled yourself through, you will do so again. I'm here for you and I'll send many prayers your way.

Hope you have a good weekend and please be careful and take care.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/27/2013 2:19 AM (GMT -6)   
Butterflake, I have edema in my legs real bad. I can gain 10 lbs in one day if I don't take my lasix.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 7/30/2013 8:24 PM (GMT -6)   
Hi Robin and Barbara. Wow! What a mess all this cardiac disease can be. As usual, when I develop something new, there are always folks who have it also.
 
Barbara I hope you know how very proud I am of you, but at the same time I feel so badly for you. You're an inspiration for me and I'm sure everyone else who knows your story. If removing your pericardium isn't too invasive, I would give it some serious thought. I'm trying to think...is there any organ in your body that functions normally?
 
Robin you might just win the prize on this one. Interestingly, my cardiologist said I have left ventricular diastolic failure, not dysfunction and he gave me lots of patient literature on heart failure. Regardless of the wording, my diagnosis sounds so minor compared to all the heart problems you have.
 
I'm tired and going to bed. I'm sending you both my love, prayers, positive energy, and ((((HUGS))))
Lupus '05, Sjogrens, fibro, major depressive disorder, CNS problems, GERD, colitis, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator
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