Re: A Need to Vent and Inquire...

[Guest guest]

Dale

Glad you came here to vent to us. Hopefully, its nothing more than a

simple setback, maybe a cold. But, you're wise to treat it as

important. I applaud that you did use your oximeter because that gives

you something concrete to tell the pulmonologist. Think how much more

useful it is for him to hear the specific SATS than " I felt short of

breath " and it will get his attention more. I think everything you're

doing is wise, just don't let one event scare you more than it merits.

You don't by any chance have a spirometer do you? If so, seeing what you

could inhale would be helpful.

As to oxygen, probably your first task is to think what kind of

equipment would best suit you. Then talk to, interview the suppliers by

phone. Lincare can be great in certain areas but not in others. It

depends on the office. How much travel do you have planned? If a lot,

then a national supplier has advantages. As to local, I have a great

local supplier but many aren't. What is available? Well, Lincare has

anything available but doesn't mean they'll give it to you.

As to meeting with the transplant team, I think its great to start the

education process. Ultimately, there will be a decision on their part

and, perhaps, one on yours. So, giving yourself time to learn and think

is very important. I've done so and, although I probably am not a good

transplant candidate, I still will keep the door open. For all

transplants, not just lungs, they continue to search for new ways of

preventing rejection. Were they to find the magic elixer without all the

side effects of today, then it would change transplants so dramatically.

We're all here for you. Now, get to a doctor immediately, if not before.

Blood in your morning expectorant isn't good. A sudden change in oxygen

isn't good. It could be many things causing this. Do you have acid

reflux? One of the great lessons we all need to learn is to not delay

and to see a doctor at the first sign. Thats the big difference between

something being serious and something being mild. So, while you're wise

in looking ahead, the issue for today isn't transplant. It's what is

going on with Dale right now to cause the sudden change and the blood.

>

> Hello to an incredible group!

>

> Most of my posts to date...new since July...have been brief with

either

> questions or a short note of information. Now I need to vent because

my

> condition may be changing sooner than I had hoped, and I had a scary

> moment in the middle of the night last night when all of a sudden I

> experienced what it might be like to really not have enough

> oxygen...I've always been claustrophobic, so that probably has

something

> to do with it. I woke up feeling cold, and a sudden shortness of

breath

> and feeling of not getting enough oxygen kept me awake for a while. I

am

> going to request a nighttime oximeter to make sure I'm getting enough

02

> at night...thanks to you, Bruce and, I think, Dennis for encouraging

> that. I'm also going to start looking at the local 02 vendors, using

all

> the jewels of info gathered from this group.

>

> Confirming what I think I've learned from this group, it seems to make

> sense for me to see what the local 02 providers have

available...Lincare

> is in the area so I assume they'll have the full spectrum available...

> and then present my list to my pulmo for an Rx, and then take it up

with

> my insurance company if they resist anything. Beth...you might

want

> to save your reply until I...hopefully...see you this weekend, which

is

> now at the top of my list. Thank you!

>

> Just 3 weeks ago I was crusing along with good day-time 02, and it had

> actually gone up from 92 to 94 while on the treadmill and reclining

> bycicle. Then I missed my regular routine of at least 3 times a week

for

> an hour...getting ready for a week out of town...and only walked the

> streets or the beach some while gone. I noticed my breathing shorting

> last week, and yesterday my 02 wouldn't go above 90 while exercising,

> and the slightest activite drops it below 90, and even below 88 once

in

> a while. Plus, my coughing ruins my appetite...benzonotate hasn't

helped

> much at all... and my morning expectorant has had blood in it for the

> last several days. That happened once before about 6 weeks ago, but

> stopped in a few days.

>

> Besides the change in my exercise routine, I switched my natural

> treatment from Serrapeptase (SerraEzyme) to Neprinol (which contains

> some Serrapeptase), about the same time my 02 started to change. I've

> ordered more SerraEzyme to see if that makes a difference.

>

> Otherwise, even though my pulmo's comments and notes suggested I was

in

> the mild category and no rush to get on the transplant list, I'm now

> leaning towards keeping my transplant evaluation appointment at Duke

in

> December...encouraged my my insurance case coordinator. My age could

> become a problem at some poinst (67) but I've otherwise been in good

> shape, so Duke didn't hesitate to call me to schedule an evaluation.

>

> I'm about to call my pulmo with an update, and would appreciate any

> comments from the board. You really are a great group, and my heart

> breaks when I read about some of the much more serious problems that

so

> many of you have, especially the old timers...read that however you

> wish...:-)... who just keep plugging away, venting when they have to,

> while still unselfishly holding hands with the rest of us.

>

> Thank you all and bless you,

>

> Dale Snellbaker NC, 67, IPF 7/08

>

[Guest guest]

Hi Peggy, I am not venting, just inquiring about that big glass dish

on your kitchen counter with that lucious looking ham in it. Your

kitchen is nice and wide and big for cooking and in the one picture

of Jane at your d/room table, those are the place mats that I love

and do you remember where you got them????

Who is that little white " poodle " ? by your feet in the kitchen pic?

MARY LOU

I LOVE YOU THIS DAY

IPF - 02

>

>

> Beth,

>

> Thanks for your encouraging words, and I look forward to seeing

you

> this weekend. Meanwhile, I'll only be able to see a physician's

> assistant Friday am about an Rx for 02. Does that sound OK or

should

> I be screaming to see a pulmo? Mine doesn't have an opening for

> weeks, although there are several others in the group at Duke

Raleigh

> Medicine, and I know that I need 02 now. I'm researching local 02

> providers now, so your help this weekend will be perfect.

>

> Keep feeling better so I can give you those hugs from Peggy!

>

> Dale

>