Vdub,
You sure have turned grey, no wonder! I am wishing you all the best, I really hope you get a good answer soon and feel better. Lily, I hope you also get to feeling better soon. Hang in there! V, I like your grey, you look distinguished!
Vdub,
You sure have turned grey, no wonder! I am wishing you all the best, I really hope you get a good answer soon and feel better. Lily, I hope you also get to feeling better soon. Hang in there! V, I like your grey, you look distinguished!
Jana
Do not fear anything, just do it afraid!
It does not matter how slowly you go, as long as you do not stop!
Indeed!Wow all this waiting has made your hair turn grey !!!
I have a partial answer from the pulmonologist..... Basically, I have several small issues, each of which alone, don't amount to much, but when added together, they cause the problems I'm having. I have a partially paralyzed diaphragm and an elevated right lung, the two of which are reducing my lung capacity to about 65% of normal. Then my heart is failing to fully compress on the "compression stroke" (to put it in engine terms), so I'm not using all of the oxygen that is in my blood stream. And, I have a bit of sleep apnea, so I'm getting less opportunity to get oxygen.
My O2 saturation level is usually staying at about 90%, which is the very low end of normal. If I had 88%, they would put me on oxygen all the time -- I really don't want that.
The pulmonologist is doing one more test for subglottic stenosis and we all know what that is. He said he would not recommend surgery on the trachea under any circumstances, so whether I have it or not makes no difference. I'll be going through the test mostly for curiosity.
My only option at this point is to make my remaining oxygen capabilities more efficient by simply exercising. He said I won't be able to start out very strong and it will take 6 months to notice a difference. It will never be normal and little can be done about it. Such is life.....
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
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Vdub, hi... I feel for you, having these problems... Vdub, my question is, since you will not be doing anything on the subglotic stenosis, is it worth stessing the body for? Curious how invasive the testing is, as yes I believe I have this as well..I never looked into what's really involved with the testing, and all the info, makes my head feel like its going to explode, so don't recall exactly... Again, I hope they have a good plan, or get one for you, Vdub... Deb.
Live,love,and laugh...
That sounds like a lot of answers for one doc's visit, vdub. Though there may still be more. My issues aren't as complicated as yours, but I do have decreased lung capacity from Wegs damage, and my doc has also said I could improve this with more exercise. So we should both start walking and report back! And I'm sure there are others who could join us....
Anne, dx'ed April 2011
Oh yes, I'll get it done! Or, as Rain man would say "Definitely do it, definitely!"is it worth stessing the body for?
I used to run (jog) 6 to 8 miles a day -- I did that for about 25 years. I hate to walk, but, with my new bionic knee, there's to much impact to jog. I will probably find a good hill to climb. That ought to get my heart racing enough and I hope the lungs can keep up. I won't know until I try.So we should both start walking
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
Forum Member Map -- world map for you to put a stickpin of where you are located....
Vdub, that's awesome, good for you... How bout speed walk? As far as the test for whatever they do for stenosis, I should find out later, so we shall see... Vdub, i wish you the best... Deb.
Live,love,and laugh...
After numbing up your throat, they stick a video camera down and take pictures.whatever they do for stenosis
Wegener's (GPA )- Apr10, Granulomatous Hypophysitis - Apr10, Diaphragmatic Paralysis - Feb16, Bradycardia - Dec16, Fibromyalgia - 2017, Hypoparathyroidism - 2017. (my story)
Forum Member Map -- world map for you to put a stickpin of where you are located....
Oh, ok, so like endoscopy? Vdub, that's what I had, that set off all this... Weird, huh? Im guessing, no scratch that, I know I already had it, just wasn't showing, except messed up stomach, fatigue, and going down to eighty nine pounds... Then routine endoscopy, and oh boy, all hell broke lose... Every symptom, had them all by the two week mark following. This is why I say stressing the body. With me, i would have more symptoms after a teeth cleaning. Thanks, Vdub, good to know... Deb
Live,love,and laugh...
Thanks for the update vdub. I am sorry for the many issues you are dealing with at once. I wonder if respiratory physiotherapy can help... and also if using CPAP at night can give you more oxygen at night... hang in there... sending prayers and love ♡♡♡
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
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