Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Something I have been dealing with lately is the sensation of oxygen starvation. I was wondering if this is common with those of you frequenting this board.
My oxygen saturation has been running 94%.
I'm not sure how much lower it is dropping during the day. At night, I know it is dipping to at least 85%.
I will get the sensation and then completely fixate on it nearly to the point of panic attack.
At night, I sleep with a cpap.
I sometimes wake up in the middle of the night so confused. At least once every two weeks I am so groggy I can't get going and miss work. I end up sleeping and having nightmares about suffocation, drowning, etc...
I'm not sure if it is from diaphragm pressure, pain medication sedation, incorrect cpap pressure (while sleeping) or something else.
Next week I begin working with my doctors to figure it out.
I was just wondering if anyone else is going through this.
My oxygen saturation has been running 94%.
I'm not sure how much lower it is dropping during the day. At night, I know it is dipping to at least 85%.
I will get the sensation and then completely fixate on it nearly to the point of panic attack.
At night, I sleep with a cpap.
I sometimes wake up in the middle of the night so confused. At least once every two weeks I am so groggy I can't get going and miss work. I end up sleeping and having nightmares about suffocation, drowning, etc...
I'm not sure if it is from diaphragm pressure, pain medication sedation, incorrect cpap pressure (while sleeping) or something else.
Next week I begin working with my doctors to figure it out.
I was just wondering if anyone else is going through this.
your kidneys may be putting pressure on your lungs - or it could be something having nothing to do with PKD.
let us know what you learn.
My mother who had PKD also had COPD and emphasima. Man that was a strong woman. I am just now beginning to realize just how strong she was.
I also have had an irregular heartbeat for over 6 years. Whether or not the PKD caused the irregular heartbeat, I feel quite strongly that it exacerbates it.
I have been blessed with sound sleep for most of my life but I recently started waking up with CO2 headaches (like if you were to sleep with your head under the covers). To address this, I started conciously trying to sleep with my mouth open to increase the air volume. This helped. As things have progressed, I now sometimes seem to be conciously breathing when I lay down to get enough air.
This last week I had a night where rather than drifting off to sleep it felt more as though I was blacking out. The next thing I would know would be that my heart was jack-hammering. This happened at least three times that night. I was quite surprised to wake up the next day.
I feel as though death has come to me, on several occasions, while I have slept. I never felt as though "my number was up" (ok, maybe one time) more like death was having a slow night and was checking on the low hanging fruit. (I don't mean for this to sound dark.)
In conclusion; yes, I too think I am experiencin some PKD related night time breathing issues. I feel as though my heart and lungs are fighting a battle for territory against my kidneys and liver!
*I realize the post I am commenting on is several years old but I found it quite helpful so I wanted to contribute my two cents.
I have chronic kidney disease and pulmonary hypertension. I do not need oxygen yet. Your symptoms sound similar to mine. I do get panicky about breathing from time to time.
Just a tip - If the lung doctor tell you that you need expensive meds, then be sure to check with the cardiologist for a second opinion before taking the expensive meds. I saved my pocketbook a lot of money by checking with the cardiologist. I now have my cardiologist call the shots above the lung doctor. This was my experience.
Good luck and keep us posted!