longTermEffects

I need to know if anyone has any issues from being on kidney dialysis for end stage renal disease. What is happening to your body and mind after being on dialysis for longer than the 5 to 7 years that is the normal for someone to be expected to live with ESRD on dialysis. I know you can live longer but I have soo many weird side effects from dialysis for 15 years and when I try to tell my doctors that these issues are not going away and getting worse they just smile and say it is all part of growing old. I feel like I am not being heard and taken seriously and I feel like they do know what is going on but do not want to do anything. I feel like I am talking to myself. No one cares until I am just in soo much pain or soo physically ill or soo tired that I can no longer do for them or go to dialysis and then they get mad because I am inconvenienceing them ( they have to move my dialysis time around or have to arrange a ride for me or have to find a way to meet my spend down to keep insurance) I looked up long term issues for dialysis patients and no one will even look at the info as I am literally crying begging them to look at the stuff I looked up because it is EXACTLY WHAT MY BODY IS DOING! They just pat me on the head and tell me that They will look into it later or take it to so and so doctor or they just ignore me totally or blame my being ill in other ways and on and on. I may be a broken clock but even a broken clock is still capable of telling the correct time once in a while if given a chance. Long term effects of long term dialysis and Endstage renal disease please!!! Anyone?? #longTermEffects and symptoms of chronic illness

I need to know if anyone has any issues from being on kidney dialysis for end stage renal disease. What is happening to your body and mind after being on dialysis for longer than the 5 to 7 years that is the normal for someone to be expected to live with ESRD on dialysis. I know you can live longer but I have soo many weird side effects from dialysis for 15 years and when I try to tell my doctors that these issues are not going away and getting worse they just smile and say it is all part of growing old. I feel like I am not being heard and taken seriously and I feel like they do know what is going on but do not want to do anything. I feel like I am talking to myself. No one cares until I am just in soo much pain or soo physically ill or soo tired that I can no longer do for them or go to dialysis and then they get mad because I am inconvenienceing them ( they have to move my dialysis time around or have to arrange a ride for me or have to find a way to meet my spend down to keep insurance) I looked up long term issues for dialysis patients and no one will even look at the info as I am literally crying begging them to look at the stuff I looked up because it is EXACTLY WHAT MY BODY IS DOING! They just pat me on the head and tell me that They will look into it later or take it to so and so doctor or they just ignore me totally or blame my being ill in other ways and on and on. I may be a broken clock but even a broken clock is still capable of telling the correct time once in a while if given a chance. Long term effects of long term dialysis and Endstage renal disease please!!! Anyone?? #longTermEffects and symptoms of chronic illness

I wish I had news that I recovered from Covid and it was awful but I'm fine now.

Because I'm still not fine.
Wednesday I saw a respirologist to tackle why I'm STILL coughing, 4 months after I first started. Why I still can't take a full breath, why I can't do anything without losing my breath. Doing dishes means gasping for breath. Taking down trash? Even with the elevator, I end up feeling like someone's choking me.
I pick up the 2 new inhalers today, along with steroid pills to try and get my lungs to calm down. They're *hoping* it's inflammation, because the next step if these don't work, is figuring out if Covid damaged the cells in my lungs permanently.

Next week, I have an ECG lined up. Because my blood pressure is staggeringly low, I'm sleeping nearly constantly, and I had a very minor arrhythmia before all this. And my doctor is scared Covid has damaged my heart.

I'm fatigued nearly all the time.
And then the confusing bits come into play: some days I'll wake up and I feel nearly like myself again. I have energy and I get to laundry and cleaning, unpacking from my move and playing with the cats and even going for a walk. I read and code and create and I finally have hope that this is over.

Then I wake the next day, and it's all gone. I can't get up. I can't stay awake, no matter what I do. I sleep most of the day, getting up only to eat and feed the cats. This can last for days.

Then I'll be kind of ok, but have intense vertigo. By the next day that's gone, and it's honestly a roll of the dice what that day will hold. Because it goes from fine to hell overnight. And back again.

Some days I feel like I can just about take a full breath, and I think ok, we're doing better. By the afternoon, my breaths are shallow and my chest burns again. I still can't sleep on my right side, because when I do, I can't inhale at all. I can exhale, that's easy. But get air back in? Nope.

And I've had chest x-rays, I don't have pneumonia.
4 months after being sent home from the ER, with presumed positive diagnosis for Covid, no one can tell me what my body is doing, or why, or even if it'll end.

I wish my update was sunny and cheerful and I wish I was stressing about the job I don't have. But I'm still stressing over whether I'll ever be able to go for a walk again.

I wish I could delve into what this is doing to my depression, how my BPD is playing hardcore into all this, how my nightmares come every night now and bombard me with a life not worth living. But right now, I'm just trying to take a single breath.

Wear your masks out there, boys n girls. Stay inside if you can. Stay away from people as much as you can. Please, take care of yourselves out there, and don't for a moment take this virus lightly.
Because for some, it won't end when the test comes back negative.

#COVID19 #longTermEffects #BorderlinePersonalityDisorder #Depression