Which ailment do I focus on?: I really need... - AF Association

AF Association
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Which ailment do I focus on?

KALIFORNIAKITTY
KALIFORNIAKITTY

I really need someone to "hear" me on line at least. My Dr's are being vague. First of all I have permanant atrial fibrillation, stage three kidney disease, a blocked left carotid artery, Sleep Apnia. And RLS. (restless leg.) I had a full hysterectomy in April 2018 and another surgery in May for a blood clot in less then 30 days. I'm recovering from both. So when I experience symptoms I never know which Dr to consult. Primary care? Cardiology? Vascular surgeon? Nephrologist? Surgeon/oncologist who performed the hysterectomy (laproscopy) my leg where the blood clot was removed is always swollen and I take water pills for that. Either my blood pressure is high and heart rate low, or the other way around. Lately my systolic BP # is high, 170, 150, 145 and heart rate from 60 to 80. If its below 60 I cant take my Digoxin which is for A Fib. Recently I had an xray that showed water on the lungs so my primary care ordered a CT SCAN which showed water on the lungs and some scar tissue from old infections (chronic bronchitis) Tuberculosis in the 40's.mo prognosis after the Ct scan. I'm still coughing, dry. She is calling me today. I never feel well enough to go anywhere and when I do, I take, pain pill , Tramadol, which gives me a hangover. So this is my life from now on? Sometimes I cant walk properly I can't wear anything but flip flops. I'm tired all the time and cat take a nap without my CPAP machine. I dont know its its shortness of breath or a tight chest. But I am having trouble breathing when I try to take a nap without my mask. Its 6am I've been awake since 2:30 potty break

Ok good luck. What's wrong with me, lately?

5 Replies
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One awful condition is bad enough but multiple ones are a nightmare. I have several ongoing but nowhere near the number you are dealing with. Its really difficult to know what is impacting on what and why, especially when we feel dreadful much of the time. I really do empathise with you.

I have found my medics confuse me, not on purpose but because they are confused with my symptoms too. My general practitioner does a wonderful job pulling things together but it's not easy especially when some of my issues are still not diagnosed.

All I can offer other then empathy is to suggest, if at all possible, you can find someone to coordinate your care and help you to know what's what ongoing and who to consult and when as with my GP. Are there other forums you can access like this one where you will get understanding for your other medical concerns too. I hope you have a good supportive family and friends which is so helpful when we feel ill and vulnerable. You are amongst friends here, stay close we will all support you ongoing. Thinking of you.

KK, Most of us have multiple medical problems. I would suggest you research having someone in your corner under the heading medical under coordinated care nurse. good luck.

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Hi KALIFORNIAKITTY. I understand how frustrating it is when we have more than one major problem I certainly do. Want to write a longer post but must go out now. But wanted to say one thing: The best piece of advice I received from my sleep doctor is ALWAYS wear your C-PAP mask if you are going to fall asleep (nights, naps, snoozes, whatever.) Even if we think we are snoozing if we fall into a deep enough sleep we will have apnea events that cause us breathing problems and can affect our cardiac and lung health. Try using your mask anytime you want to nap. I first thought if I dozed sitting up in my recliner the mask wasn't necessary. I was wrong. Have had sleep apnea since 2011 and have learned a lot about keeping my lung function from getting worse and have made plenty of mistakes along the way. Hope this helps. Take care. irina1975

Hi Kitty, that all sounds like bad news and maybe your doctors don't want you to feel worse than you do? I guess you are in USA, here we expect the GP (primary care doctor) to coordinate things and pass us on if they think it's useful. Sometimes they don't when we wish they would so it must be good to be able to call direct.

All I can say is that I hear you and I do feel very sorry for you and hope something can get better 💕

Kitty,

My condolences on your woes. I ask that you keep an open mind and consider alternative treatments EG: vitamins and herbal supplements. Look for my posts on this blog. I was diagnosed in 2015 with AFIB, but I am sure that I was suffering from it for many years with shortness of breath, etc.. It took an event to trigger my diagnosis. I was prescribed Warfarin, Cardiziem, Metropolo and Linisopril. I felt like I couldn't do anything, and the cardiziem was and still does make my ankles swell UNLESS I take Hawthorne berry capsules which act like Digoxin. I didn't feel like doing much of anything.

I have weaned off of all meds with the exception of Cardiziem which I still take twice a day. I can walk, do stuff in the garage and I've even taken motorcycling up again. There's no magic bullet, but i do feel that eating sensibly and supplementation and appropriate exercise make a big difference. I am convinced that my sleep apnea (yes, I have it too) is the main reason for my AFIB. My goal this year is to lose 50lbs which I am sure will reduce the strain on my heart, and if I lose enough should also reduce the fat that develops within the throat too. My belief based on many articles and peoples experiences on many forums.

Good luck Kitty,

Chico, CA

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