Just wanted to update everyone

Vombrown

Dealer - Purveyor
#82
Ed....you should also stop shooting those tasty critters that you are eating. By the way, the mule deer are homing in on the front porch again this season so we can have coffee on the deck while we hunt!
 

Doug Lester

Well-Known Member
#84
Be patient with the results of the mold/fungus culture. They're not fast growing organisms and it may take a couple of months to get the final results back. Great to hear that they eliminated lymphoma though.

Doug
 

EdCaffreyMS

Forum Owner - Moderator
#87
FINALLY! Some movement. I have an appointment with the interstitial Lung Disease dept at the University of Washington, on 14 Nov @ 1pm! After speaking with the med center representative yesterday, my suspicions were confirmed in that the right hand wasn't communicating with the left hand. (why things were dragging along) Even though my local Doc/Case Mgr assured me a number of times that all the required notes/records, etc had been sent, The U of W Rep asked about several specific CTs, tests, and results that he said had been promised to him, but never received. :rolleyes: So, that means Ed will be making the rounds today, picking up copies of records, and then not only faxing them, but also hand carrying copies to the visit.

What exactly is going on with me is still somewhat of a mystery. The theories right now from the Docs is Toxic mold poisoning, which is causing fibrosis in my lungs, and all the associated symptoms/issues, OR Pulmonary Fibrosis. They know the mold is there, but treatment cannot take place until they positively identify the mold type....which is at minimum, a month long process. My hope is it's all about the mold, because the Pulmonary Fibrosis is the one that can't be cured, and is progressive....and has the potential to end my knifemaking career.

The up side is all I have to do is make travel and lodging arrangements, and turn it all in for reimbursement when we get home....hopefully with a lot more knowledge/answers than what we have right now. Thanks you everyone for you prayers, thoughts, and well wishes..... words can't say how much it's appreciated.
 
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J. Doyle

Dealer - Purveyor
#88
Good news Ed. Its very frustrating that in medicine, and every other area of life it seems, you have to do everybody's job for them.

Hopefully though you're getting one step closer to getting this figured out and treated.
 

KenH

Well-Known Member
#91
Hang in there Ed, we're all Praying for you. From a selfish standpoint, WE (forum folks) need your knowledge so NEED you making knives for a LONG time!!! We also value you so we want you to get well.
 

EdCaffreyMS

Forum Owner - Moderator
#97
Cindy and I got back home from Seattle today. Honestly, I was disappointed.... It was basically an "orientation" visit. The Doctor went over medical records, condition, problems, etc. and had blood tests done....... then with no offers of solutions/treatments, said..... I'd like to see you back here in mid December for further testing. Cindy took three days off work, we traveled to Seattle and back from Montana...... and even after making sure they knew it....... nothing except "come back for more tests" :mad:. My only other experience with medical outside the local area was the Mayo..... they knew my case front to back when I arrived, had done 3 phone appointments with me, and had their stuff together before I ever arrived. I got there, they did a couple of tests, then spent the rest of the time building a treatment/action plan..... maybe I expect too much?

I was just hoping I'd get some relief/intervention.......instead of a "come back next month". Now the fight will be with my Primary Doc and insurance to allow/authorize me to go back again....so soon. My primary Doc assigned me a "case manager" who's suppose to be taking care of all this sort of stuff, but so far all I've done is pick up the pieces/mess that individual has made. Pretty darn frustrated right now.
 
#99
Sorry to hear Ed. I know with my wife's various illnesses I've had to fight tooth and nail on occasion to get the answers and relief that she needed. Then again we've also had some outstanding physicians and nurses. It's a bit of a battle to find the right combination. Though once we did and started getting some real answers things were much better.

Hang in there...and hound them if you have to. Sometimes Doctors (and Insurance companies) don't listen so well.
 
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