Re: Trip

April 12, 2008

Thank you Beth. I'll tell about it now and then going to disappear

for a few hours. (Thought about writing this is Aussie but too much

effort for a tired man).

I got up early Monday morning and headed off on the great adventure. It

was already in the 70's here and headed to the 80's. I headed north and

drove through Tulsa, OK and headed on up to St. Louis. I was doing well,

so decided to drive on past St. Louis to avoid the rush hour traffic the

next morning. I drove about 2/3 of the trip on Monday so as to make

Tuesday easier. It was all uneventful, although I still have to research

what the crazy letters they add to the Missouri road signs mean. Also,

didn't know there were places with 75 mph speed limits.

Monday night, I arrived tired in Litchfield, Missouri and pulled up to a

Holiday Inn Express. Well, all they had left were rooms with large

Jacuzzi's so I suffered and took one. It felt so good to soak after the

day of driving. Also, I found there working at the desk the most

beautiful, inside and outside, girl. She was so helpful getting all my

stuff in and refused a tip. Turns out I got the same treatment when

checking out and had to update my compliments card. Also turns out that

the two girls had been friends for 13 years, the second the Godmother of

the first one's son. Yes the first looked 19-20 but had a six year old

son and was really 26. Now, I mention all this because consistently I

find people so willing to help. Asking for any form of help has been

such a new experience for me but when you see those who do it so

willingly and lovingly then it reinforces the ability to ask.

Now, Monday night, I did find out a few oxygen issues. I had a liquid

reservoir with me, a Companion1000 portable and a concentrator. The plan

was to use the concentrator in the hotel rooms and the reservoir for

refilling the portable only. Unfortunately, my oxygen supplier isn't

national and I will probably have to change for that reason. However, I

could have still gotten more liquid along the way if required. Well, I

hooked up the concentrator and the cannula and oh what an odor. Then I

disconnected from it and still the odor. It made the room smell like

cigarette smoke so off it went. I quickly moved to the reservoir and

went that route. I also checked one other thing. I had seen a need to

turn my Companion which I'd just gotten delivered for the trip higher

than normal (was suppose to get Marathon but one brought was broken and

Companion was probably better for long days anyway). So, I took my liter

meter and a 25 foot tube (of course a bit unfair since portable only

works with shorter ones) and measured and found out my suspicions were

right. It wasn't me requiring more, it was the equipment delivering

less. So, from then on when I had to turn it up higher than normal I

realized it was just the machine. My best guess is 4 lpm was really

about 2.5 and 6 lpm was around 4 or so.

So, Tuesday, on the road again and arrived in Chicago mid afternoon. I

stayed south of Chicago in Tinley Park. It was still not a bad drive to

the hospital and at 30-40% of the cost. A whole convention area of nice

hotels all under $100. I checked in, turned on TV and promptly fell

asleep so soundly I didn't even wake to a phone call. I woke around 6:30

or so, returned the call and then decided to eat lazy and headed to

Popeye's. I got rested and well relaxed for Wednesday.

Wednesday I got up quite early and arrived at the hospital (University

of Chicago) over an hour early, which turned out to be great. First stop

was for CT and they proceeded early. Was a CT with lots of inspiration

and expiration and also doing it face down after face up. I'd never had

one face down before. Later the doctor did express very strong feelings

that no CT outside a hospital was up to the standards of a hospital.

From CT, I went for my Echocardiogram. Pretty standard fare. Finished it

and went to find the ILD coordinator who said to find her first break I

had. So, found her and she saw I was ahead of schedule and arranged for

me to go on and have blood work then instead of later.

Blood work was interesting on more than one count. First, they took over

20 tubes of blood. Lots of small ones but still the nurse said about

half a unit in total. Second, two interesting things that I consented

to. First, to allow the IPF group to keep some blood for their

examination and comparison. All the 13 Centers of Excellence are

collecting any they can so they can compare data and build a large

database of information they could ultimately provide some clues. Also,

I consented to some for the University of Chicago Medical Center. They

are now attempting to collect some from every patient so when later they

are talking about diseases, they can go back to patients who had one and

pull the blood and remove all information tying it to the patient but

provide it for use by the researcher of the condition.

From blood went to PFT's. They did complete battery and were able to get

a good set. Now, fortunately I've learned from here that PFT's can vary

by conditions, technician, equipment, software and many other unknown

reasons. So, I know the comparisons may be misleading and its more a

matter of long term trends. That said, my FVC was 36% which makes sense

of all but my most recent one before. My FEV1 was 46% and that also

makes sense. That tells me too that I think on my most recent PFT before

I just didn't do well at the test. One other thing. I did, this time,

request a different mouthpiece and got one that was soft and I took

inside my mouth. Much easier than the hard one that is too big for my

mouth. Total Lung Capacity showed 48%. Everything else was between 29%

(Expired Reserve Volume) and 51% except Residual Volume which is 66% and

has always been higher than the others. DLCO was 42% versus previous 38%

so for practical purposes about the same. These were the most thorough

PFT's I'd had done as they did repeat each one enough to be sure the

readings were all good and so there were no wild inconsistent numbers.

Now, the six minute walk they did made no sense to me. They did it only

with oxygen and at the rate I thought I would need to complete it. Also,

I was using my portable which we knew didn't give what it registered. Oh

well. I turned it up to 6 lpm (somewhere around 4-4.5 I guess in reality

but don't know) and off I went. But I walked away. The tech didn't even

check me during the course of the walk, just at beginning and end. But,

I checked myself and made sure I didn't drop too far. I bottomed out at

89% and ended at 91%.

From there finally back to see the doctor. I saw Dr. Strek. I was

very impressed from the start. First thing was that she had actually

been through my thick file before I arrived and prepared a list of

questions and things to cover. She did state that now she would go back

through it with the new information and with my answers. Questioning was

pretty routine-yes, I can check almost every possible cause except for

smoking, but there I have huge volumes of second hand smoke. She gave

only very preliminary thoughts as she will need the rest of the test

results plus consultation with her pathologist before giving more. She

pointed out one thing very interesting to me. This is that by having her

pathologist review the biopsy slides she would be talking with him and

questioning and discussing back and forth. Think about this. My biopsy

was reviewed by a pathologist at the hospital and at Mayo Clinic but in

neither case was there ever any communication between the pulmonologist

and the pathologist. In fact, the results were simply emailed or faxed

to the surgeon and the pulmonologist.

Nothing will be known until after the pathologists review but I think at

least initially she is less sure of the form of PF from what she saw

than my two other pulmonologists have been. There were a couple of items

leading to that. First, she didn't see on the CT the honeycombing she

would have expected with UIP/IPF. Second the Mayo Clinic report although

concluding that was what I had, did also point out a couple of things

that were atypical of UIP/IPF. The report did point out extensive

microscopic honeycombing and other things that would say UIP, but also

read as follows: " In a few areas more chronic inflammation is present in

the parenchyma than typically seen in idiopathic pulmonary fibrosis, and

in a few areas increased alveolar wall fibrosis is seen, analogous to

fibrotic nonspecific interstitial pneumonia. Nevertheless, the

overriding pattern here is ususal interstitial pneumonia. " So, I'm quite

interested in what her pathologist says and their communication. It

certainly is possible that I have multiple forms of PF.

She did indicate, although she'll know more from the blood work, that

she saw nothing to indicate any connective tissue disorder. As she is

their PF expert in autoimmune disorders I'm particularly interested in

seeing if she dismisses them completely as others have done. The early

indication is that she'll confirm what has been said in this regard.

Everyone kept wanting to know if I needed my parking ticked validated

and so I assumed maybe this meant free or something. I found out upon

leaving it means you get a whopping $2 off your parking so only pay $21

instead of $23 or something like that. I guess every $2 counts but

validation procedures for a 10% parking discount just isn't such a great

deal.

I then drove to the headquarters of the Pulmonary Fibrosis Foundation

where hard at work I found Leanne. It was so wonderful meeting her and

that first hug especially. She then gave me a bag. Someone scilly had

recommended smooches and strawberries. I got the most incredible huge

chocolate chip cookie and nice fresh very tasty strawberries. They were

sooooooooooo good.

Leanne and I then went to Shula's Steak House for dinner. There is still

no better steak anywhere. I had such a great time with her and the food

and service was great. I hated having to return her to her car and say

goodnight. Then back to my hotel I headed.

Thursday I woke to forecasts of storms and maybe even snow. I headed

toward home, deciding to come back a different and longer route through

Kansas City instead of St. Louis. It was horrible weather with storms

and wind. I drove to Des Moines and then headed south toward Kansas

City. The first glimmer of sunshine I saw was a 5:15 pm in Southern

Iowa. I heard on the radio as I was about an hour south of Des Moines of

the tornados spotted and the tornado warning so was just ahead of it,

thankfully. Little did I know the awful weather closer to home. Tulsa,

for instance, had floods closing schools. The DFW had tornados including

one that knocked windows out of a major Fort Worth building closing

three blocks downtown.

Well, as driving was better starting at 5:15 pm than it had been all day

I drove on to Kansas City. When I checked in there around 8 or so it was

quite nice actually. Now, I don't know who watches American Idol, but

is a huge Cook fan and his hometown is Blue Springs, Mo,

which is a suburb of Kansas City, so when I let her know that I was

close she went wild and started finding out things for me to check out

for her.

Well, when I got up Friday, Kansas City was now very cold, torrential

downpours, and wind with possible snow on the way. Regardless, I headed

for Blue Springs. I got photos of his high school and the baseball field

where he played ball. I found her two tshirts for the Blue Springs South

Jaguars. I went to downtown Blue Springs and saw the posters in the

windows and just happened that the first ones I saw were at the Chamber

of Commerce. The lady there gave me one which I also brought back to

her.

I now headed back through Kansas City and the rain had let up a little.

I headed south to Wichita. The winds and cold picked up and as I reached

Wichita they were predicting worse. Unfortunately, I did have to get gas

along the way and nearly froze to death and had to stop and use

restrooms. But, I said, get me where its warm and headed south toward

Oklahoma City.

Once there I decided I was close enough to drive on home, but I did see

enough to say I might take a short trip back to Oklahoma City sometime.

I made it here last night and took her loot and home I came.

Now, here I am, way behind and not planning to catch up on it all today

but I have missed you all. I did see that covered for me by tossing

in if BWBB was here, he would tell you.....lol. Thanks SGIO.

This trip was mainly to get to the University of Chicago and I'm very

glad I did that. I think if anyone can getting to one of the 13 Centers

of Excellence is worth it. Regardless of how good your doctors are,

these centers do have additional information. I may get my diagnosis

confirmed precisely or may find out I have additional forms or whatever,

but I'll be glad I had the additional look there. The clinical trial of

Revatio is one I may or may not qualify for, but if I decide to do it,

we agreed that doing it at Tulane would be just as good since the

standards for evaluating and testing were the same across all trial

sites. That would be closer.

I didn't see a lot on my trip but was surprised by the amount of open

areas. I'm very use to congestion and one town running into another.

Miles of farmland were something I hadn't seen for a while. I at least

touched Texas, Oklahoma, Missouri, Illinois, Iowa and Kansas. I probably

would have stayed another day in Kansas City or somewhere had the

weather been different. I confirmed a couple of things in my mind.

First, traveling by auto with oxygen (while at relatively low levels of

use) is no problem. Just always be sure you have a backup plan. Second,

I'm probably going to have to switch to a national supplier with the

traveling I plan, which probably means Lincare. Third, I'm glad I went

to the University of Chicago. Fourth, I'm glad I got the van as it is a

good travel vehicle. Fifth, and I know others have at times been treated

rudely, but I learned again how helpful people are and want to be. I

found out in Litchfield that 's grandfather had been on oxygen

some, so I think I was a chance for her to honor him in a way. Sixth, if

you can possibly meet anyone else on the forum, do so. It's so

incredible. There are others i wish I could have met on the way but time

and weather didn't let work out.

I'm ready for west Texas, San and then my major trip to NC.

Hopefully, Disneyworld later in the year. I drove too many miles in too

short a time this trip and in the future hope to limit daily drives to

around 300 miles and days between any longer drives. I covered over

2,000 miles on this trip, the longest road trip of my adult life. But, I

enjoyed it and feel fine now that I'm back home. It is so nice to be

back here to share things with all my friends on the forum.

>

> Hey! Welcome back road warrior!!! I assume you are safely home. Tell

us about your trip when you have a chance! We're glad you're back!

>

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

> Newbie Here....how does this forum work?

>

> I just wandered in here and think maybe once long ago I might have

been

> here but as I'm oxygen deprived may need some refreshing. Can anyone

> tell me what is going on here?

>

April 12, 2008

Bruce...thanks for the travel-log. Interesting! Glad there were no situations to cope with.

will be disappointed that was voted off AI. I was too.

Glad you're home safely.........

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Newbie Here....how does this forum work?>> I just wandered in here and think maybe once long ago I might havebeen> here but as I'm oxygen deprived may need some refreshing. Can anyone> tell me what is going on here?>

April 12, 2008

Welcome Home Bruce!

I'm glad you Enjoyed the trip and soon you'll have answers. I missed you!

---- Original Message ----

To: Breathe-Support

Sent: Sat, 12 Apr 2008 12:12 pm

Subject: Re: Trip