[Dave-Wendy Barrer]

I think the largest and fasted changed that occurred was golfing,  a social outing that I now realize I took for granted. Thinking it would be a hobby I would do in retirement and into my 90’s,  being part of a league with 100 other guys for years…. Sunday morning with a few close friends, fun tournaments and annual trip to Florida during the long cold winter for a week of daily golfing and drinking with a few buddies.  This is creating a tremendous hole that will be hard to fill.

Its a huge hit to a weekly routine and future vision that seems to be changing monthly. After so many years participating, I expect its something that I may never get over.

I have however… like you eloquently wrote in “quite time with tasks and projects”…..  dug into more art projects with sketching and design,  its a great way to occupy your mind and accomplish more compact shorter term goals one picture at a time.

 

I wonder if there is a way for everyone to post their projects I would love to see the creativity…if the web designers are reading,  a drag and drop option would be amazing.  Im still getting use to the forum…maybe it exist already.

Dave

[Dave-Wendy Barrer]

Charlene

Thats very interesting with your journey to diagnosis experience, it really makes we wonder how many people on on a similar path.

Thanks again, here is an update on the last 5 days or so on the 50mg of prednisone after the “treatment”

Might have pushed it too hard cutting the grass,  on the weekend, paid for it with some extra pains.

Treatment continues to be successful in the “quality of life” reference

Continue to get stronger with a more stable oxygen level while I sleep and have been off nighttime O2 for 4 nights.

In a normal relaxing state staying steady at higher numbers as well.

Lung pains are still strong but not as sharp and stabbing as before,  seems to settle into a more steady overall pain with the feeling of having a seat belt still on.  I am trying not to take any pain medication during this time to better evaluate the changes.

Daytime, light duty, walking slow,  I am now able to achieve without oxygen for the most part,

Breathing still deeper and the crackles or rails have almost vanished.

Side note:  there is a tingle in my neck,  and I haven’t found any reference anywhere, it starts a couple of inches just below the skull and radiates down 6-8 sometime 10″ not quite to the upper back..  Its very electrical, like the commercial Dr ho’s pain treatment. very intense I wouldn’t call it painful at all somewhat relaxing.  I can trigger it with a light walk allowing my o2 to get around 85.

Side effect of frustration and anger is definitely heighten 2 questions at the same time is 3 to many. Focus can difficult.

Just waiting to here for appointments to ILD clinic for more follow up.  ill post the picture when i figure it out. overall i would say a huge success so far

cheers Dave

 

[Dave-Wendy Barrer]

Cant seem to configure and insert the photo….is there a guide for this?

thanks dave

[Dave-Wendy Barrer]

Sorry for taking so long on the CT Scan Disk information

We were (are able) to request copies of all our procedures,  it takes a couple of days and they just load it onto a CD for pick up at imaging.

It seems the disk has a working 3d Imaging application with all the sides organized into a few folders.

One folder in particular has over 750 images of 3 completely different views. I placed red dots beside them.

When the second scan was done you can open the two files in separate windows and review the images side by side…a very powerful and easy visual reference of indication of any changes,

 

First time inserting a picture…see if it works.

 

[Dave-Wendy Barrer]

The overall symptoms came gradual,  and I was being treated for asthma first with the Blue puffer for a few years, increasing assuage until moved to the red symbacourt,   more and more with increasing breathing difficulties, after the the 4th breathing test after about 3.5 years it was seen as something different, and we started the process of the new diagnosis,

Even with hindsight i cant see how our medical system could have reacted any more efficiently or responsibly. each step was logical and seemed to correct the condition at the time,  until it didn’t.

The progression over the last few months,  must have taken my lungs past a tipping point,  I can say the term “scared” has never come into play,  I would say concerned

I will gather those scans and try to send you a picture of how and what we did to do the overlay,

Update on the day 11, 12 ,13:  continued 02 improvement two full days with no oxygen on and slept the entire night with out it. very light movements and walking around unassisted as well.

The lung pains are still strong,  and still feels like a sack of potatoes, driving in a car seems to giggle just a bit too much,  highway driving is fine,

The new portable system that plugs into the car has changed mobility situation 100% I barely use tanks  anymore,  Although i’m going to strap on my jet pack and go mow the lawn….

Anything you need,  we are here.

cheers!

Dave

[Dave-Wendy Barrer]

I will answer as best I can,  these post have been very helpful from everyone,  it was the education we were looking for. Thanks you for all your efforts.

I could not reasonably say either a virus or a flare up,  and i think the specialist was puzzled as well.

Part 1) The discussion was 250-1000mg of solumedrol  for 3 days administered intravenously over 45 minutes, 250 was the decision and they seemed to be calculating it directly against Prednisone 300-400mg as a comparison.

Part 2) 50mg prednisone daily at breakfast with food and 1 hour later calcium pill for 30 days (10 days so far)

Solu-Medrol(methylprednisolone) is a synthetic corticosteroid used for severe or incapacitating allergic conditions, dermatologic diseases, endocrine disorders

Solumedrol is similar to prednisone which is an immunosuppressant drug with powerful anti-inflammatory properties used to treat a variety of conditions. High doses of Solumedrol (1000mg) help to halt the acute inflammatory process

We had the 2nd CTscan scheduled at 6 months,  but at 4 and half, I had felt it was going very badly and could feel the changes weekly. They had requested me starting Prednisone for a few months for a correction before the scan,  and we asked why don’t we scan before we start for a benchmark.  At the hospital, we requested copies of all scan and x-rays and with photoshop I was able to overlay my own slides and check,
I was put on Oxygen 24/7 that day,  the hospital was scheduled for the end of the week.

I haven’t heard of or discussed any of the two drugs you mentioned.

(I’ve never experienced sats as low as 74, that must feel terrible for you! Do you monitor it with a home oxygen probe? Even with your oxygen on, do your sats drop under 85 when climbing stairs?)
2 weeks ago yes… even with oxygen with minor exertion I would drop rapidly 85 and less ,  but my recovery was also very very rapid 2-3 min I could be back.
( Oh, now I am reading more about the treatment you endured. I suppose it is good that it was administered in hospital so you were safe, as that is a lot of prednisone to deal with. Why did they initiate this for you Dave? It sounds maybe like inflammation, and that the treatment broke up whatever was in your lungs opening them up and allowing for better oxygenation. Would you say that is correct?)
That seems accurate… they had talked about a white cloud as well.  they were calling this process a “Hail Mary” that I had nothing to lose at the rate I was progressing.

Now at  Day 10  Regardless something is definitely happening,  My lungs opened up more today…. I haven’t breathed this deep in 6 months.  staying solid 93-95 relaxing manageable 88-91 moving around.

There seems to be a distinct difference now between the pains in the lungs and the association with the low oxygen,  hard to explain and it could be the drugs talking.   Before with coughing , distress and pain 02 would drop in relation to it.   Now i can have all the pains but still have a high 02 level.

Worked lightly in the yard today for over an hour, had company,  and feel all my muscles for some reason tonight. Its somewhat spiny and euphoric,  trouble concentrating and some moments of internal anger.  the changes are extreme and i know the pain is still there,  but the change is quite profound.

I will keep monitoring, …  you get a very deep understanding about mobility and limitations, its quite a sobering reality.  we will be happy with these good days . and keep moving forward.

cheers Dave

[Dave-Wendy Barrer]

thanks for all the posts,  I just went through a treatment that was interesting to say the least.

After a 2nd lung CT scan after 5 months from diagnosis,  the doctor was shocked at the rate of progression

Background: Not 100% sure yet between Stage 4 Sarcoidosis to Chronic Hypersensitive Pnemanites.  All under Pulmonary Fibrosis,  but seems to be accelerating as fast as IPF

Went from no- to oxygen 24/7 in 90days  increasing to 4 over the last month.  Lots of what I call jabs waves and solid pains.

I thought 89 Sp02 was low until I seen an 85  then 82 the 78 and 74 -69.  under 74 I’m looking for a way to sit down a quick as possible, I don’t want my wife to have to try and catch me,  At this point i can’t climb a fight of stairs without dropping under 85

 

That same day he scheduled me into the hospital..

Just went through an intense treatment of 3 days of solumedrol with calculated out to 300-400mg of prednisone per day

Was administered in a hospital setting for safety

Seemed to handle to process very well and was let out on the 3rd day with a new prescription of 50mg daily of prednisone. (with Calcium Pills)

DAY  4 was tough felt like my lungs were being ripped from the inside out,  spit up lots of chucks and nasty stuff.

DAYS 5 and 6 less intense solid stand pain with some sharp barbs,   day 6,  and it was very sudden, I took a breath and it was deeper and more open than in a long time,  I felt it open up.  that afternoon starting turning down the O2

DAY 7  sat for hours without oxygen on maintaining 95-97 Sp02, put on a tank and went out and cut the lawn taking rest and being careful.  Did some light home chores, and grabbed a shower,  (no oxygen) After resting went back to no oxygen all afternoon and throughout the evening,  went to sleep without it,  but had one coughing fit in the night.

DAY 8 only grabbed oxygen for moderate to heavy movements  and went out for diner,  eating drinking socializing for about 6- hours,  no oxygen the entire time!!  (made sure we had all the back up with us though),  It had become very stressful,  being prepared all the time.

Day 9 some rotating pains are back,  lots of controlling your mind, knowing your body is undergoing extreme changes, its surprising how simple questions can evoke such extreme thoughts.  I’m  getting used to taking time to respond and giving myself the space to think about what I’m doing.

I think the doctors thought process was to quick start an event that could shock the lungs and see how receptive they would be to a treatment.  Has anyone else had any treatment like this?

Dave and Wendy