Just wanted to update everyone

EdCaffreyMS

Forum Owner - Moderator
Update: Earlier this week the test results for the mold in my lungs came back..... and I went in to see a local infectious disease Doc. The mold they discovered was a rare type, and after a couple more tests, the Doc concluded that the mold was "incidental", and NOT infectious.... meaning that the spores were in my lungs, but never infected me/grew there..... and not part of my issue(s). Yesterday I got a call from another of my local Docs, who said he'd had a conference with the Infectious Disease Doc, and after they went over all of my current test results, both came to the conclusion that what I have is an auto-immune disease.... he told me the name, but I can't even pronounce it, much less try to spell it. At least it's a direction, and the best possibility for an answer so far.

He had intended on starting me on medications right away, but now wants to wait until we return from the next trip to the University of Washington Med Center (Seattle). They have me setup for a Petscan, echo-cardiogram, and a Pulmonary function test next Monday and Tuesday. He said he believes the Doc in Seattle will come to the same conclusion/diagnosis. I hope so..... this being in intense pain/fatigue 24/7 is a tough row to hoe. The Doc says that initially he wants to start me on heavy doses of steroids, which he says will reduce the intense inflammation throughout my body....which is what causing all the pain/fatigue/symptoms.

The down side is that according to the Doc, it won't be easy (the side effects of heavy steroid doses). Back when they were treating me with infusions for the lung nodules, they gave me 40mg doses of steroids with each infusion...... talk about being on "fast forward" all the time....jittery beyond explanation, and couldn't sleep for 3-4 days afterward. He's talking 100-200mg doses of steroids daily this time. Not sure what'll happen, but at this point, any possibility of getting me functional again, I'm willing to try. He did say that if the steroids work as he anticipates, he'll be able to switch me to something that doesn't have such intense side effects. So maybe, just maybe, there's a bit of light ahead, and some hope that I'll be able to function again. Until then, I guess it'll be laying on the couch, eating pain meds every 5-6 hours.

Once we return from Seattle next week, I'll be sure to update everyone on this thread.

Finally, I want to convey my sincere thanks to everyone for your support and prayers....and especially to those who have taken the time to PM, and check up on me. Those who have shared their situations, and experiences, be it themselves, or a member of their family, have been immensely encouraging, and have given me the strength to keep going..... when I was ready to give up. What a wonderful community we have here, full of caring and compassionate individuals. I've always said that it's not about knives.....it's about people, and you've shown that to be so true!
 

Sean Jones

Well-Known Member
Ed, sounds like they're making progress. Did your Doc say how long he would have you on that large a dosage of steroids? From what little I know about my wife's use of steroids that seems like a lot. They started her at 40 mg and then gradually dropped it to 5 mg. However she's been on it over an extended period of time.
 

C Craft

Well-Known Member
Ed, glad to hear they got a direction on this thing.

With my wife I asked the Doc at UAB, Birmingham why her disease was so hard to diagnose. His response was most doctors will never see a case of TM in there career. Here we see a case at least once to twice a month. That was before they built the big TM clinic there. One of three in the whole world, that treats the whole patient that has TM!!!

University of Washington Med Center (Seattle) was one of the best things to happen to you! Keep your chin up!!
 

Raymond Richard

Forum Owner & Moderator
Ed, Had no idea your health had taken a turn for the worse. Glade to hear they have come up with a treatment plan and I pray that it works and you'll be back on your feet soon. Will keep you in my prayers.......
 

opaul

Well-Known Member
Just read your update. You are a brave man with a positive attitude. You have folks praying for you. This goes a long long way.
Take care.
 

Gliden07

Well-Known Member
Hey Ed Glad to hear that you have gotten some encouraging news! I hope that this diagnosis will put you on the road to recovery!! Still on my prayer list!!
 
Good luck and all the best with your health battle Ed. I just joined here a couple days ago so obviously don’t know you, but I can tell from the short time I’ve been here that you are one of the good ones. I especially liked what you said in an earlier post on this thread “...it’s not about the knives, it’s about the people...”. This does seem like that kind of place and I’m glad I found it.

We are all put to the test at some point in our lives, though it rarely comes at the time, or in the manner that we would hope for.

Hang in there!

Andy
 

EdCaffreyMS

Forum Owner - Moderator
Cindy and I returned from our second visit to the University of Washington Medical center. I'm sorry to say that I still have no answers, nor a plan of action, nor any treatment options. In other words frustrated again. The first day they did a Petscan, and an echocardiogram. The second day was a lung function test, and then a visit with the Doctor.
The Petscan showed significant growth of the nodules in my lungs, and as I've mentioned before, most other tests were only slightly out of normal range. Most areas/tests out of range, tend to point towards an autoimmune issue.

The Doctor told use that my case would be put before a board of specialists this Friday, and that he would be calling me next Monday with the consensus of that board, and once again promised "I'll have a direction for you then." The part that bothered Cindy and I, was that he was giddy/excited when he spoke of taking my case before a board of University Doctors...... gave me the feeling of being a rodent running on a wheel.... it seemed more important for him to have a case he could present to his University peers , versus helping me with my medical issues.

When I mentioned that my local Docs wanted to put me on steroids to reduce all the internal inflammation, he said he didn't want that to happen.....because he wants me to have a surgical biopsy on the lung nodules, and it might shrink the nodules. Here's the issue with that..... I've already had THREE biopsies on this stuff, with the latest one being in October....and that one landed me in the hospital with a collapsed lung. All of the previous biopsies have come back with the same results..... non-cancer......... He's gona have to present me something pretty compelling to make me go through another biopsy. We'd also be into another waiting game...... try to schedule the surgery, which ain't gona happen until at least after the New Year, and me in my current condition for that long? I just don't see that happening.

My issue is intense pain and fatigue that have kept me non-functional for the last 4+ months, and if the steroids the local Docs are recommending can help me with that, then I'm gona go that route....at least for now. I've just about reached the end of my rope with doing nothing but laying on the couch all day....trying to will the pain under control (pain meds work only minimally). Although I would never do anything stupid, I think I have come to understand how some people who are in severe/chronic pain are willing to end their own lives. I've had a number of episodes where the pain is so intense I can't speak....and just lay on the floor withering, until things ease up. I wouldn't wish this stuff on anyone.

Thanks for allowing me to vent my frustrations, and thanks to everyone for your support and prayers.
 
Ed so sorry to hear this! Perhaps the doc does not want you on steroids because he wants inflammation more visible when he presents to his peer group? Don't really get the thinking of docs in general...

Just know...many of us are praying for you.
 
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