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.
I'm at my wit's end here and I don't know what else to do.
For the past few months I've been short of breath and have been extremely weak and tired.
I mentioned something to my neph and he felt it wasn't kidney related. After listening to my heart he ordered an echocardiograph. Meanwhile, my primary care doctor ordered a pulmonary function test.
The pulmonary was fine and I haven't heard back from the echo (which I had done on Thurs) yet. Thursday night....I felt terrible. Now I couldn't breathe when I was laying down. I'm not coughing, I don't have any cold like symptoms....just a few allergy related nose drips but that's it. Friday morning I wake up and I really can't breathe and I'm sweating.
All day long it was so hard to do ANYTHING. I walked down the stairs to go check the tires on my car and right back up them and it was like I had ran a marathon. I would get dizzy when going from sitting to standing and I just generally felt terrible. At around 6 o clock I couldn't take it anymore so I called my doctor.
He instructed me to go to the ER immediately so I did.
They ordered me a CT and an X Ray of my chest and EVERYTHING was normal.
I asked if stress can play a part....they said possibly.
I asked if an echo could show something other than what these tests did. They said possibly.
So, I guess now Im jus waiting on those results....but if it was something serious, wouldn't I be notified immediately?
Today the symptoms include pain (not just in my kidneys but also kinda shooting down my abdomen which I don't usually have) and a tightness in my chest. I also am very pale and have been getting the chills, but no fever.
I just feel like...blah. I can't describe it.
But...the bottom line is, I'm 25...and I'm 5'1, 125 lbs....I should not be out of breath from taking two steps to put a wheelchair back at my job.
does anyone have any advice for me???
For the past few months I've been short of breath and have been extremely weak and tired.
I mentioned something to my neph and he felt it wasn't kidney related. After listening to my heart he ordered an echocardiograph. Meanwhile, my primary care doctor ordered a pulmonary function test.
The pulmonary was fine and I haven't heard back from the echo (which I had done on Thurs) yet. Thursday night....I felt terrible. Now I couldn't breathe when I was laying down. I'm not coughing, I don't have any cold like symptoms....just a few allergy related nose drips but that's it. Friday morning I wake up and I really can't breathe and I'm sweating.
All day long it was so hard to do ANYTHING. I walked down the stairs to go check the tires on my car and right back up them and it was like I had ran a marathon. I would get dizzy when going from sitting to standing and I just generally felt terrible. At around 6 o clock I couldn't take it anymore so I called my doctor.
He instructed me to go to the ER immediately so I did.
They ordered me a CT and an X Ray of my chest and EVERYTHING was normal.
I asked if stress can play a part....they said possibly.
I asked if an echo could show something other than what these tests did. They said possibly.
So, I guess now Im jus waiting on those results....but if it was something serious, wouldn't I be notified immediately?
Today the symptoms include pain (not just in my kidneys but also kinda shooting down my abdomen which I don't usually have) and a tightness in my chest. I also am very pale and have been getting the chills, but no fever.
I just feel like...blah. I can't describe it.
But...the bottom line is, I'm 25...and I'm 5'1, 125 lbs....I should not be out of breath from taking two steps to put a wheelchair back at my job.
does anyone have any advice for me???
It seems I have the flu but the other symptoms seem unrelated.
I don't know what's going on....
Worried about you - how goes it? Loo
Flu (or whatever it was!) is gone and my doctors are still trying to figure out why I'm getting worn out so easily...but I believe they will have an answer :)
Thank you for checking up on me!
Why did your nephrologist order an EKG after listening to you heart? Is it to find out if you have MVP? Why are you waiting for EKG results? Each time I go for an EKG, if there's no line, I'm in and out in five minutes with the results.
When you were in the ER were you feeling the same as at home, or was there a releif of your symptoms?
Most of your problems seem to come from your breathing.
I don't have sleep apnea, but it seems something like it. When I lay down flat on my back, I can sleep but I'll wake up an hour or two later with a cough. Now, I prop my back up to 45 degrees from the bed. I also use something I bought from the pharmacy called Breathe Right. They're plastic strips with post-it like glue. Stick it on your nose to keep the nasal passages open. A bonus is that soon to be nasal drips dry up before dripping.
Did you stop exercising after many years of exercising? I read about a person who exercised a lot, then stopped to concentrate on his education. One day, he ended up in a ER. The doctor told him he almost died of pnemonia. He said that from exercise, his lungs grew big, then from not exercising his lung collapsed.
Here are two breathing exercises that you can do.
1) It is called abdominal breathing.
Keep the mouth closed.
Slowly breathe in and out through the nose.
On inhale, expand the belly outwards.
On exhale, retract the belly inwards.
It is a deep breathing technique that can calm you down. This is the way we had breathed when we were babies, but became lost as we grew and became shallow breathers.
2) Sit down, feet flat on floor.
Place each hand on your lap.
Thumbs facing the body.
a) Back straight. Look straight.
b) Inhale, turn body to left.
c) Look over shoulder, exhale.
d) Return to a) and repeat on the right side.
Repeat 24 times.
This is an exercise for the lungs and heart. Each turn of the body makes the lungs act as a bellow to calm the heart (blow out the heart fire).
I'm waiting on results for an echocardiograph, not an EKG and it was ordered because he thought he heard a murmur and explained to me about people with PKD developing heart valve disease. My follow up appointment isn't until the 23rd. I'm thinking since I haven't heard anything though that it may not be that serious.
When I got home from the ER my symptoms were the same.
Then I started with the flu stuff on Saturday night. So 24 hours had passed. But they didn't find anything at the ER.
Since then though....I've felt a lot better, but my sinuses are still stuffy and today my snot was what I like to call the "infection color". (Sorry to be graphic, but...you know what I mean, I'm sure! lol) So, I'm pretty sure I have a sinus infection. I'll just have to call my primary and get an antibiotic.
Now, I'm sure this is all unrelated to why I have been having this shortness of breath for the past few months that seems to be getting worse. It used to be just with like strenuous activity like climbing a lot of stairs. Now I can barely make it up the stairs and I get winded from just walking from the parking lot into work. I hate it. It wears me out and I'm 25 years old.....sorry...didn't mean to sidetrack into a vent.
I had a pulmonary function test and my lungs are perfect. So, it's not my lungs. We'll see if it's my heart now I guess.
As for the exercise, I've always done just light cardio, jogging, and then sports like softball, tennis, soccer. Then I got a little older and could only do light cardio and walking. Then 2 years ago, when I developed chronic pain from my kidneys becoming so enlarged over time I only walk about a half mile now and do yoga.
I'm also a daily meditator so controlling my breathing has never been a problem....but thank you so much for posting those exercises! I do appreciate them. :)
As for the sleep apnea, I don't know....I'll have to see...I only wake up in the middle of the night to use the bathroom and that's maybe 3 nights a week. I never wake up feeling like I can't breathe. Well, until now...I just can't sleep on my back anymore. I did find a way to prop my pillows up just the right way so I can lay comfortably on my side and have had no problems with that.
This just came about last week though, the night before I went to the ER actually....so it may be due to this (what I think is a) sinus infection.
Like I said, I'm going to call my primary on that and just wait and see what my neph says about my heart and move on from there and see what else he may think it is.
Thanks again for your help! And sorry such a long post! lol
Be aware that many doctors don't realise that the lab reference ranges for thyroid function have changed in the past couple of years. Go to thyroid.about.com and read the excellent information there.
I have PKD and was feeling run down, thinking it was my kidneys in bad decline, and then I went to a new doctor who is now treating my hypothyroid and B12 deficiency. I feel much much better and I have been able to stop my asthma medication.
You might also be low in vitamin D, as the kidneys are where vitamin D is converted into active forms. I would get that measured too. If it is low, get high dose D3 (NOT D2) in oil-filled capsules. Other forms of D3 dont' work well. (There is info on that on the thyroid site too.)
it turns out it is just from all the stress my body is under...
I'm in constant pain so it's just starting to wear and tear on me.
Right now I'm not doing so well....I'm fighting a nasty cyst infection (first round of antibiotics is not working) and I'm passing some stones as well :(
My job is also now charging for my health insurance benefits....
things are not looking too good for me right now.
Please keep me in your thoughts and prayers.