Just wanted to update everyone

MikeL

KNIFE MAKER
Sounds like some rough times and plenty of frustration! Hang in there. Sounds like you have a good support system. You should also know there are guys like me who kinda lurk in the background that appreciate what you do for this community and are pulling for you. One foot in front of the other best you can. Prayers for quick way ahead and recovery.
 

EdCaffreyMS

Forum Owner - Moderator
A bit of an update on my health status....

Got a call today, from the Doc at University of Washington... after putting my case before a board of Doctors, all my symptoms/tests indicate Lupus (although the Doctor was careful NOT to label it as Lupus), with my lung issues being a separate entity. The Doctor at U of W wanting to dive into a surgical lung biopsy right away

So.....here's the plan: Starting tomorrow, 100mg prednisone per day to see if it will relieve the intense pain I'm having. If it does, we adjust until we can find the lowest dose that does the job. Another lung "scope" asap, to get a culture of whatever is going on in there (they tell me my lungs are the worst they have ever been). And then another CT scan in 1-2 months, and depending on what that shows/reveals, possibly a surgical lung biopsy. I can live/deal with a lot of stuff, but this intense 7-9 level pain on a daily/full time basis has really worn me down. I pray that the steroids do as is hoped, and calm this intense pain, so I can deal with everything.

Thanks for continued support and prayers!
 

luciusx5

Well-Known Member
I can’t imagine how tuff your road has been. Just know that a lot of people are thinking about you and praying for you. Hang in there. I’m sure there is some relief just around the corner.
 
'Doing something stupid' can start to look like a good 'solution' out of our pain sometimes, but the kicker is: it's always a terrible solution for those we'd leave behind. And as some have called it: "a permanent solution to a temporary problem" (at least we are hoping this is temporary and you will get through to the other side of it before long). But, can understand (up to a point) what you're saying, Ed. So sorry to hear what you are going through and am following and praying for you (and your family). Bill
 

EdCaffreyMS

Forum Owner - Moderator
Well, since the treatment plan was established, things have already started to move. I started on 100mg prednisone yesterday, and was thinking it wasn't gona work.... because I had about the most pain filled day since this situation began. Last night I had some difficulty sleeping, which is to be expected with these meds, but this morning, I woke up with significantly reduced pain!!! Praise God!!! Cautiously optimistic that things MIGHT be getting at least a little better. Then, I get a call from the pulmonary Doc, saying to be in at 8:30am in the morning for a bronchi-scope. The procedure is called a "lavage"..... which he explained is a light scrape in the effected areas of my lungs, and then a flush to see if whatever is there can be treated.
This thing scared the heck outta me after the procedure in October (they did lung biopsies with the scope)....that landed me in the hospital for a week with a collapsed lung.. but the Doc assured me this is the most basic of procedures....so am confident that I'll be back home tomorrow afternoon. Again.....praying that's the way it goes.
MAYBE.....just MAYBE, things will be good enough that I can at least participate in Christmas!! I know that sounds dumb, but I've been in so much pain, that even normal day to day interaction with people has been impossible...... so I'm dreaming small for now, and then looking ahead, and hoping that once we get the med doses worked out (Doc says that could be another month or two) AND the biggie.....figure out if my lungs can be treated/repaired, that I could be capable of getting back into the shop, and actually working again!!! For the first time in 5 months I have that hope, and might just be receiving my own "Christmas Miracle"......but again, being cautiously optimistic.
Thank you for all the support and the prayers!!! Love all you folks!!
 
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John Wilson

Well-Known Member
That’s good news, Ed. Prednisone has been a wonder drug for me at times. Just be careful because it’s not curing anything it’s just blocking the pain. If you overdo yourself while feeling no pain, you will feel it for sure when the prednisone cycle ends. Just be careful. Best wishes and continued prayers, Ed.
 

EdCaffreyMS

Forum Owner - Moderator
As of right now, prednisone may be a full time drug for me, possibly for the rest of my life. Although the Doc did mention that once we figured out the correct dosage level with it, I could be switched to another drug that doesn't produce such side effects. It's prime purpose with me is to reduce internal inflammation..... supposedly from autoimmune disease, which is what's causing most of my pain.
The second issue is the lungs.....so far, cancer has been ruled out, but whatever it is, continues to grow/increase at an alarming rate..... which is the reason for the hasty Bronchial scope tomorrow.
I'm elated that I am feeling good enough to not be balled up on the couch today! But like you said.... I'm restraining from going to nuts at this point....... cautiously optimistic ;) Thankfully it isn't too strenuous to hang out on the forums and catch up on all I've been missing!
 
Wonderful news Ed!! Continuing to pray for you....finally some headway!! Hope this means a great Christmas for you!

teaching my "apprentice" today the Ed Caffrey knife sharpening technique!
 

John Wilson

Well-Known Member
As of right now, prednisone may be a full time drug for me, possibly for the rest of my life. Although the Doc did mention that once we figured out the correct dosage level with it, I could be switched to another drug that doesn't produce such side effects. It's prime purpose with me is to reduce internal inflammation..... supposedly from autoimmune disease, which is what's causing most of my pain.
The second issue is the lungs.....so far, cancer has been ruled out, but whatever it is, continues to grow/increase at an alarming rate..... which is the reason for the hasty Bronchial scope tomorrow.
I'm elated that I am feeling good enough to not be balled up on the couch today! But like you said.... I'm restraining from going to nuts at this point....... cautiously optimistic ;) Thankfully it isn't too strenuous to hang out on the forums and catch up on all I've been missing!
Ed, I’m just sorry you’re going through all this. Thankfully the prednisone is helping you feel better. Anything beats the way you’ve been feeling.
 
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