Just wanted to update everyone

soundmind

Well-Known Member
I will continue to pray for you. You had me worried when you described the pain you were in and the doctor in Washington who was "giddy" over your situation. Glad you're getting some relief. Like I said I will keep you in prayer and your family too.
 

EdCaffreyMS

Forum Owner - Moderator
Once again, many thanks to everyone for your support and prayers..... it's what has kept me fighting!

Went in for another Bronchoscope this morning..... the stuff in my lungs has grown extensively since Oct, and they are trying to find out if it's an infection, or something caused by the supposed Lupus. It was fairly quick today....was in and out before noon! Worst part this time was they didn't knock me out..... just numbed up my throat and went for it....that was one odd experience. Probably won't get any word on the scope until after Christmas. Speaking of that, I wish all of you a very MERRY CHRISTMAS! Enjoy the season, the love of family and friends....... and most important, remember what it's all about!
 
Dang, Ed! Glad to hear of the good (better?) news. I can only imagine how many people are lifting you up to the one who we are celebrating. If you could only see how many people you bless, here and I imagine everywhere you go.-and how God is using this to bring scores of us to our knees for you. Thanks for keeping everyone posted. It sounds like even doing that would be a struggle. I will continue to keep you in prayer- and your wife and family, too. This must be very hard for them too. And hearing an admonition from you, with what you are going through right now, to "remember what it's all about" rings loud and clear in my heart!
God Bless- and I hope for you and yours that 'peace that surpasses all understanding' this Christmas.
Bill
 

EdCaffreyMS

Forum Owner - Moderator
Wanted to update everyone on my health status. I'm still taking things day by day. Still not able to get anything done/work in the shop...spending most of my days on the couch trying to mitigate pain. It's been 6 months now.... and it's been the worst 6 months of my life!

Most of the Docs are taking a "wait and see" attitude. (there are 5 different Doctors/specialties involved in my case) However, yesterday I had a visit with the Oncologist, who's been with me for over a decade, and after reviewing my history, it's of note that in the past, after a series of retuxan treatments, the "stuff" in my lungs either stopped growing, or even regressed.
The only other Doc who's indicated they want to make a move is the Pulmonologist....who's wanting to put me on a type of cancer drug, in hopes of helping the lung issue. However, I have reservations, due to the side effects of that drug. Long story short, I'm going to push with ALL the Docs involved to recommend the retuxan treatments....it's worked in the past, caused minimal side effects, and if it doesn't work this time, no harm done, and we can move on to other treatments.

Where I'm really stuck, is Rheumatology..... there are only 11 in the entire state of Montana! And NONE OF THEM are accepting new patients.
It took me 3 months to get an appointment with the one I'm seeing now.....she flies in once a month from Nevada, and spends a week here each month, helping out the only Rheumatology Doc in Great Falls! I see her one more time in early March (for a total of TWO visits)....then she's done here forever.....and I'm left hanging. With her leaving, she did give me an in road to actually see the only Rheumatologist here in Great Falls .....but I can't get in until JUNE of this year!

What's happening is... that since what I'm dealing with is an Autoimmune issue, all the other Docs are deferring to, or waiting on what Rheumatology recommends/prescribes..... The only Doctor who sees/realizes this is the Oncologist, and is the only one who is actively seeking to help me.

Here's the really stupid part..... Any of the Docs can prescribe the retuxan treatments, BUT... in order for insurance to pay for the retuxan treatments, it must be the Rheumatologist who prescribes it! :rolleyes: What's going on in my lungs hasn't changed. The only thing that's changed is they've gone from calling it a "low grade lymphoma" to "autoimmune disease". So... that means that with my one remaining Rheumatologist appointment, I'm basically going to demand she prescribe the retuxan.

The one thing I've learned through this experience is that Doctors only make their best guess, usually do NOT talk to each other, and YOU are nothing more than a number on a sheet of paper to most of them. It's very important that the patient speak up, and if necessary, put your foot down. YOU are the one who knows your own body, how it's feeling, and what's going on. If they could just get me back to "functional", I'd be OK with it. This sitting around, depending on pain meds to get through the day is no fun at all.

OK, that report aside, Tim has updated and cleaned up KnifeMakerTraining.com .... stop by and give it a look!
 

John Wilson

Well-Known Member
Great post, Ed. I hope everyone pays special attention to the part about speaking up. Too many doctors today are purely playing the insurance game and treatment based on reimbursement. The sad reality is that many doctors could be replaced by a kiosk because all they do is cross-reference the patient’s symptoms to the recommended drug that is reimbursable for the diagnosis. When that line of treatment runs its course with no improvement they move to option 2 on the bingo card.

You have to jump up and down to get any movement, and especially to get any special attention.
 
The sad reality is that many doctors could be replaced by a kiosk
Up here the guys that work on the train have a "call a doc" program...A friend said it's great...when he goes to the doc they never really look at him anyway. So they tell the doc symptoms and get the prescription..(doubt this flies for opoids...)

Ed..I don't get why if one treatment method was working...they have to start something different...sheesh...docs scare me...huge blindspots and very little common sense.
 

EdCaffreyMS

Forum Owner - Moderator
Latest Update: It's been 6 months since this all began. I've not work seriously in the shop for 5 of those months. Due to the pain, I spend the majority of my time sitting in the recliner, surviving till the next pain pill.

Right now my "knifemaking" are the times I can get on the forums and offer what help I can.

The Doctor at University of Washington recommended a surgical lung biopsy back in Dec, but having had two of those in the past decade, and serious complications with each, I've resisted, but the local Docs have convinced me to go ahead with it. It seems that NOTHING will move forward until this happens. So... as scared of this as I am....... the referrals are in, and my case manager is supposed to be working on the surgery appointment at U of W med center.
Don't know where this will go, but hopefully it will give the Doc something to go on, and get me some treatments/intervention/relief. Right now I have ZERO quality of life, can't work in the shop, nor do many of the things that before all this, I had taken for granted. Simple things like household chores, or even playing ball with the dogs are now major undertakings, that leave me exhausted.

I'll update again when I have more information. As always I appreciate your prayers, thoughts, and well wishes.
 

C Craft

Well-Known Member
My wife has an auto immune disease, so I have some idea of what you are going thru and your frustration and disillusionment with the medical field and doctors!! You have to be your own best advocate or the red tape and bureaucracy of the broken medical system will suck you in!! I have learned far more about auto immune diseases and what it can open your body up to, than I ever wanted to learn. However that does allow me to short cut a doctor who is trying to blow smoke up my a$$, when it comes to my wife's treatment! Hang in there Ed. Half of the battle is keeping your will up!! You just have to deal one day at a time somedays!! Revel in the good days and spit in the face of the bad ones!!
 

KenH

Well-Known Member
Ed: We appreciate the update and our continued Prayers are for you (and your wife Cliff).

Ed: While I don't want to encourage you to push yourself too much, I do want you to know how much we all appreciate your into to the forum. I've learned a BUNCHES!! from your posts and talking with you at Blade.

Ken H>
 
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