Day 18 - May 17th

[filcab]

Day 18 – May 17th

Hi and a great big hug for each of you,

As I mentioned before, I am not a big fan of generic posts, but at the present time and with my Internet connection, I have to take it when I can get connected and when I have a post typed in Word that I can copy and paste. Please bear with me in this regard.

I would really like to thank Blossom aka JackieNS and her DH, Dave for loaning me this laptop with the Internet card so I can keep in touch with you all. Jackie has been in to see me several times J J and this week I had the great pleasure of meeting Dave, who we have all heard great things about. Together they are one great couple! Thanks Jackie and Dave.

I am still leaking a moderate amount and I really didn’t have anything to gauge my progress and I found that a little disconcerting. I want to thank Cheryl at the CopdinCanada site for telling me about her having a leak in her lung and it took 49 days for it to heal over! I now have that reference point I so sorely needed. Thank you Cheryl.

The plan of attack is to wait as long as we have to, to have the leak close over. The next option, if the leak slows down considerably is to pump some form of talc into the lung through the chest valve and hopefully that will seal the leak. The leak is too big right now to do a pleuroscopy (3 small incisions and then a camera, laser and special tool to seal leak). If the leak decreases, then the odds for a successful seal increase. The final option, an operation under a general anesthetic, is not available due to the frailty of my lungs and my low FEV1 and DLCO values. I don’t know yet if I am a candidate for a Heimlich valve (one-way valve) or not. That valve would allow me to go home with my leak? Maybe?

They have opened up Phil’s Gym at the CopdinCanada Forum and so now I am forced to start exercising! J As mentioned previously, I am the proud owner of a new Rotolator walker/chair, with a heavy duty basket and hand brakes. Going into my McGyver mode, I jury-rigged my D-tank carrying case to accept an E-tank and strapped the carrying case to the side of my walker, so I don’t have to drag an E-tank behind me. The reservoir for draining my pleural fluid will fit nicely in my basket and so I am able to have hands-free operation as I walk. As an added bonus, the walker allows me to slow down, as I no longer try to rush to get from point A to point B, probably holding my breath along the way. I did my first walk yesterday. The first time I have done a walk of any consequence since last fall. I had no idea how far I could go. My usual daily walk was 100 ft. back and forth across the living room and then 25 ft. up a flight of stairs and back. So, 150 feet total is what I was striving for. On my first walk I went 296’! J This morning on my first walk I managed 376’! J This afternoon I managed 396’! JJ After supper I would like to go at least 228 more feet to put me over the 1000-foot mark for the day!! To me, that would be awesome. Not bad for a 10 per center, eh? I also brought my 2# weights from home for upper body exercising, but so far I have only used them once.

I am also on a low-dosage morphine maintenance program. Presently, I am taking 3mg every 6 hours as an anti-anxiety medication and not for pain. There is a Respirologist (Pulmonologist stateside) that I met with who is going to write up a report on low-dosage morphine maintenance in the treatment of COPD. He has two British colleges coming over to do some case studies on people receiving morphine while they have COPD. It is expected that I will be one of the case studies. They will come to my home and do an interview and then follow it up, finally culminating in Dr. Morphine’s (my name for him) report. Morphine is the only anti-anxiety drug now known that has no side affects. I believe it has the beneficial side affect of relaxing our breathing without affecting our breathing muscles. I think that may be part of why I was able to walk as far as I could the last two days.

Most of us were brought up old school where we were led to believe that morphine was an end-of-life drug and that anyone receiving morphine had but 6 months or less to live. This is the battle now facing Dr. Morphine is to try and remove that stigma and have low-dosage morphine become an acceptable treatment for COPD.

A quick note to MaryAZ. Hi Mares. If I remember correctly you turned down the morphine as a treatment because of the morphine stigma. Are you taking it now? From my experience and the fact that only 3mg/6 hours has helped me, I would recommend that you start up on the treatment. Just my thoughts and as you know the final decision is yours and I abide by it.

I have so many experiences I wish to share with you, but I am running out of gas for today. Please know that I am perfectly happy to be in this holding pattern until the leak stops. My postings will be sporadic, but they will show up.

God Bless You All,

Phil

GOD HAS BROUGHT ME TO IT: GOD WILL PULL ME THROUGH IT.

[bobbioh]

Phil,So nice to read you. Im so glad you were able to walk all that way.Amazing way to go!!! Im so glad you are sharing this all with us. it gives me such a sence of well being. And confidence to face whatever COPD hands me Thank you,Keep on keeing on.You and yours are always in our prayers and thoughts . Untill next time bobbioh

[larrynz]

Its great that Jackie was able to loan you the laptop, we are pleased to have updates direct from you and you can check up on us .

[morningstar]

Hey there Fearless Leader,

So good to have you post. WOW that is great about walking those are nice walks. That will build strength for you and make you more hungry and you might gain another pound or two. The lung will seal all in time. It is onward and upward for you.
We are all so proud of you and the ability you have to fight.
As always you are in my thoughts and prayers.

[Blossom/Jackie W.]

Hey Phillipe....I am PROUD of your efforts and accomplishments today! I think we all are. Also I'm glad that Cheryl was able to shed some "positve"; if there is such a thing with a leak.....

(FYI...I'm gonna be re-arranging Phil's Gym....seems to be becoming a popular spot thus deserving of it's own board....heck; just look at you!) I've got some 5 lb weights here when you've worked back up to it BTW!)

Seriously my friend....I know how far you've come and I've seen the changes; quite miraculous actually. You just keep on, keeping on.....

Love You,
J

[virginia]

Phil I think its great..your doing so good ..Im the old mother hen though and hope you want over do it and cause a set back..You take care..OMG Phil that is so negative.

[cheryl]

Phil -- I'm so glad you're doing so well. You sound fantastic. It's just wonderful that you were able to walk so far. I went home with the Heimlich Valve. My thorasic surgeon told me that most people tucked the bottle inside their pants, but of course did I follow his advice? No. My first trip out in the car after I got home, I slammed the car door right on the bottle that catches the fluid - smashed it to smithereens -- Ask for a spare to keep at home just in case. Keep up the great improving.

[John]

Phil;
Good to see your moving I hope the best for you & don't forget to exhale dam it !

[Blossom/Jackie W.]

hope you're exercising today Phil. If you are or did...head on over to the new "day to Day" are of the gym.

Also; it was MaryKy re: turnign down the morphine. She saw your post over at LW2 BTW and commented.

Phil!