Just wanted to update everyone

EdCaffreyMS

Forum Owner - Moderator
#62
Thanks Don!

Still waiting on biopsy results..... I go to my Primary Doc for a post hospital follow up on Monday, but don't have anything else scheduled until the 30th.....with the Oncologist. Getting through the days (and nights) with the help of Norco...... seems to be about the only way I can have any functionality. Ready to get this diagnosed, treated/fixed, and get back to the shop...... this sitting around, not being able to do anything, is enough to drive a person nuts.
 

John Wilson

Well-Known Member
#64
Ed, I wish you all the best and pray daily for your healing and comfort. The time sitting around not knowing has to be the worst part. At least specific bad news gives you a direction and a plan for action.
 

EdCaffreyMS

Forum Owner - Moderator
#65
UPDATE: The biopsy results came back from the Mayo today. The up side is that there is no sign of cancer or lymphoma. The down side is that there is some type of fibrosis/serious inflammation going on in my lungs. Doc said that both my lungs are badly inflamed, with the tissue between the air sacs being "stiff", and that although it's not "cancer", it could be just as serious. (he thinks the "stiff" tissue is what's causing the severe pain). He said that as soon as we were done on the phone, he was gona be on the phone to University of Washington, and get me to Pulmonology and Hematology in Seattle, ASAP. Furthermore, he now believes we are dealing with something caused by exposure, either from the military, the knife shop, or both. I suspect that's just a "best guess", but it's better then a sharp stick in the eye. He also admitted that we are out of his specialty now, and we need to get me somewhere that can get a grip on what's gong on, and why..... and hopefully get me headed in the direction of being healthy again. I guess the long and short of it is..... we're basically either starting at square one..... or an entirely new chapter with this stuff. Honestly, my worst fear is that they tell me I have to quit knifemaking........ for me that'd be about as bad as it could get. Thanks to everyone for your support and prayers! Keep them coming!
 
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John Wilson

Well-Known Member
#66
Ed, hopefully this is something you can treat yourself at home with a nebulizer. Breathing treatments might be a pain but at least it’s something you can do at home.
 

EdCaffreyMS

Forum Owner - Moderator
#67
I've been doing the nebulizer thing for over a month now. It's not bad at all, takes about 10 mins, 3x a day, and my lungs feel better for about an hour afterward. They also have me doing Advair inhaler 2x a day......that actually seems to help the most, but the steroid stuff creates other effects with too much use. Kinda spooked me when the Doc told me to be sure to rinse well with water after using it, to avoid "thrush"...... didn't have a clue what "thrush" was until he told me......doesn't sound like fun. I always thought "thrush" was the cool muffler to have on the car when I was a kid. :)
 
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John Wilson

Well-Known Member
#68
Thrush hurts. Any sore in a person’s mouth hurts, so having it all over your tongue and throat is like strep on steroids.

Hopefully it’s something very manageable, Ed. Best wishes.
 

soundmind

Well-Known Member
#69
Sounds like they're on the ball with it, though. Although travel doesn't sound like fun. I hope you continue to get good healthcare through it and I will continue to keep you in prayer.
 

DropPoint

Well-Known Member
#70
Ed you are in luck that they are on the road to getting this diagnosed correctly soon. My wife has rheumatoid arthritis in her lungs which is very similar to what you describe. It took the Doctors almost three years before they had her problem diagnosed correctly. There are a number of causes of and diagnoses of the stiffness in the lungs so I wouldn't venture to guess what has caused yours. However in the experiences I've had with my wife it is quite manageable with a Nebulizer and several different inhalers.

Best of luck. It sounds like they are on the right track.
 

C Craft

Well-Known Member
#71
Ed, I will tell you this much. My wife has a rare disease, it is not curable but it is treatable! When she was finally diagnosed it was done at UAB Birmingham, Al. I questioned the doctor as to why no one else could put together the diagnose, took over a year! He told me that most doctors will never see a case in their career, and most will not know what they are looking at because it is rare!! Going there for treatment is about a five hour drive one way or she would still be seeing him!! They have one of the only three clinics in America dedicated to this disease!! Anyway the point I am trying to make is place like UAB have the kind of resources that are able to find and treat the rare issues. They see cases of the rare kind every day!

I am glad they are sending you to University of Washington. It is that kind of a place. Now days you have to be your own best advocate when it comes to health care.

Will continue to keep you and your family in my thoughts and prayers!! Hang in there Ed. You know you are not going thru this on your own. The big man upstairs is always there for you and he will continue to be! I have always heard the God will not give you more than you can bare.

There has been times when I sit down to talk with him, I remind him I am about there. After all we should be able to talk with God like a friend, because he is!!
 

Don Robinson

Well-Known Member
#72
Ed, I've had asbestosis all my adult life. My lungs are lined with asbestos fibers.

It limits my breathing capacity greatly, but I learned to live with it. Many, many years so far. I'm 84 years old.

I've always used all those aids everyday. Never forget.

Best wishes to you, my friend.
 

Robert66

Well-Known Member
#73
Ed, they are on the ball now they know what it is not, seems like you are gonna get some expert help now, the c word is not spoken in this house.

I read a about health care in USA not being up to much for some, they seem to be looking after you.
We in UK have our National Health Service which everyone pays into who is working but everyone gets it who lives here , even millions of illegals who pay sod all.
Our much treasured NHS is in meltdown due to foreigners coming here for free treatment.

Everyone on here is supporting you with prayer Ed.

Good luck
 

Daniel Macina

Well-Known Member
#74
Ed I'm praying you get healed up and are able to continue knife making. You are one of the first people that got me interested in knife making and are a constant help in nearly every project I undertake.
 

EdCaffreyMS

Forum Owner - Moderator
#75
Latest update: Yesterday I had a follow up appointment with my primary Doc on the Air Base..... checking me after the hospital stay. He told me that he was going to take point on getting me to the University of Washington. He set me up with a Case Manager on the Base, and to their credit, the case manager contacted me first thing this morning. She had already contacted U of W, and said they have all the records, tests, results, etc. needed, and that someone from U of W would be calling me by the end of today...... well, that part didn't happen...no phone call today. The way it seems is that it's just a matter of U of W calling me with an appointment now. What I did like is that the Case Manager from the Base said I have the option of flying or driving (not too keen on driving from here to Seattle....as it's a 12 hour drive each way), and that since they have me on pain meds/narcotics, my Mrs. would be authorized to go as a "non medical attendant". It's times like this that make me feel very blessed that I stuck out the military career and retired.....they foot the bill for EVERYTHING, including travel, lodging and meals. Only down side is that it will involve about a days worth of running around the base, getting all the paperwork lined out, and getting signatures from pretty much everybody....... but that's more than a fair trade off in my mind. I just wanna get there, get this thing diagnosed/treated, and get on the road to being as health as I can. I'll keep things updated here as I know more. Thanks again for your support and prayers!
 

J. Doyle

Dealer - Purveyor
#76
Its encouraging that at least it seems things are headed rather quickly to top-notch care. Wishing you and your family the best Ed. Continuing prayers.
 

EdCaffreyMS

Forum Owner - Moderator
#80
Got a little more news today. Although not what I consider "good" news..... well, maybe..... the pulmonologist called and said that on top of everything else, I also have mold in my lungs. o_O My first though was what the heck? Then I recalled a conversation Audra Draper and I had at the Blade show.... a mold infection of the lungs called aspergillosis (ABPA). Something usually associated with dust from animal horn and/or antler materials. I passed it along to the Pulmonologist, who seemed interested, as he asked me a couple of times to spell it.

They were unable to identify the exact mold type locally, so it's been sent off to the state lab for positive ID. According to the Doc, this could actually be a good thing, in that the mold, could be the "fibrosis" the biopsy results spoke of. He assured me that mold in the lungs is fairly common, and curable, once they know the exact type of mold. Guess we'll see where this goes.
I gotta say, my head is spinning..... from one thing to another, to another. And to top it all off, the Case Manager who's assigned to get me to U of W, gives me a speech each time we talk, about meditation, positive energies, and tells me I need to consider a vegan lifestyle. :oops: I guess her heart is in the right place...... but me? vegan? Uh......no.
 
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