I first felt afib October 2017, had an ablation in 2018 and was doing rosy. Then last August I was diagnosed with focal segmentalized glamerisclerosus(sp) which has taken me in a wild journey. This condition is basically one where the immune system attacks the kidneys. Treatment involves heavy steroid therapy. The steroids are tough in the body and mind, but my nephrologist said take them or die. Not much of a choice there. By October, I had steroid induced diabetes, overall weakness, irritability, dizziness, and while my bloodwork seemed to be improving I felt worse each day and afib came back with a vengeance, brought on by the steroids. I had been paroxysmal with a high heart rate. I became persistent with a wildly swinging heart rate and nothing would bring it under control. More than half a dozen trips to the Emergency Room with no relief. A couple of cardio versions. Increased anti arrhythmia drugs. No relief. It is now February and I’m still in Afib, still not feeling well, having been seen at Mayo Clinic and I experience breathing problems first diagnosed as pneumonia. Then a bronchoscopy which revealed that I had blastomycosis and a collapsed lung. Blastomycosis is a rare fungal disease brought on thru exposure to fungus that lives in damp soil and rotting wood. I live by a river and had spent August clearing brush by the river. I’m now on a 6 month drug treatment. Immediately after the bronchoscopy I began to feel better. The pulmonologist saved my life. This disease is deadly if not controlled. So far I’m feeling much better. My nephrologist has been reducing my steroids. Weakness is subsiding. Blood work is such that my nephrologist says he is cautiously optimistic that my kidney disease is in remission. And two weeks ago, I woke up to being in sinus rhythm for the first time in months. This part of a wild journey appears to be coming to a positive close.
And now all I have to do is deal with this covid-19 virus. We are in a very rural area, so it’s pretty easy to self isolate. It just was discovered in the next county over, so I expect it will come closer before it goes away.
So that’s my story for the day.
Written by
Heart1234Wisconsin
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Oh my goodness, what a lot you've been through! Thank goodness that you're starting to leave the nightmare behind. I hope you grow stronger each day now and wish you a happy and healthy future. Certainly steer clear of the Covid19 virus.
It has been a wild ride. There were only a couple of times when I was ready to give up. When I couldn’t breathe and no one could figure out why the antibiotics weren’t working to control what was thought to be regular old pneumonia, not a fairly rare fungal disease with I might add a collapsed lung was the toughest time. The persistent afib with no relief no matter cardio version nor drugs came in second.
They say what doesn’t kill you can make you stronger. I think that’s true. I’m hoping that I don’t have to get any stronger!
What an awful journey. I can’t imagine how you coped but you did and obviously here to tell the tale😊😊
The fungal spores interests me. How did the spores become airborne to get into your lungs! Were you chain sawing with no mask? I am a podiatrist and often wonder about the fungal spores I breath every day? Yes I do wear a mask but it will only be marginally effective,
I was using a brush cutter and a tractor, both of which disturbed the ground and the wet limbs. I was fairly close to a river that I have frontage on. So I was kicking up dirt and rotten wood. I didn’t use a mask. Apparently the blastomycosis fungus is pretty limited in its choice if habitat. The area around the Great Lakes is prime habitat. The doc that treated me did all his residency in the East and had never heard of it till he came to Wisconsin. In the year and a half he’s been here, he has seen 54 cases. It requires a drug therapy of no less than 6 months. It is quite persistent. Of all the issues I’ve had, all the docs were most concerned about it.
You have left me open-mouthed with your ill-health journey and all credit to you for remaining upbeat about it. Steroids are miracle drugs but the long-term effects can be severe. My brother-in-law has lupus nephritis and his consultants are trying other drugs in an effort to stop the high dose of steroids, and so far nothing has worked. His bones are extremely brittle and he is only in his early 50s.
Pleased you had swift treatment for your lungs - sounds horrendous. Stay well, and no more clearing!
Thanks for your support. Now we just need to stay away from the virus! Thankfully I completed the brush cutting last fall. Only minor work this year. A little shelter to enjoy the riverside when I’m healthy enough to build.
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