Re: Update on Me Mischievous Kitten

November 26, 2009

Donna

I'll comment on the whole post now for you.

First, you really need to get to an IPF Center of Excellence or

equivalent and get a full thorough diagnosis. They will want to do their

own CT's, own labs. But they can do the testing in one day and then

cover the findings with you later. You'll still need a local doctor for

routine maintenance and to coordinate your care. But don't accept a

referral to a friend of a doctor who may or may not be expert but you

don't know. You've dealt with an unclear diagnosis too long.

You could have COPD and PF or no COPD but knowing is critically

important.

Get copies of all tests and labs. Know what 44% lung function is

referring to because it could be FEV1 or FVC or DLCO or TLC. Look at

your PFT's, read CT reports. There is no 44% of oxygen getting into your

blood determination from a PFT. Did you have an Arterial Blood Gas or

who said that to you?

Yes, you have big decisions but you need the best medical evaluation and

diagnosis and information possible to make them. You have nothing now on

which to make a decision.

When you get to experts you can discuss a VATS and the pros and cons as

well as treatments you might or might not want to pursue. But certainty

of diagnosis has to happen first or at least some idea on it. No one can

even say at this point the value versus the risk.

Your previous experience with anesthesia is important for them to know.

Both Beth and I had some problems with anesthesia on our VATS. Now,

I'm still glad I had mine but I sure wasn't at the time.

You say on your sleep study your oxygen dropped to 44% saturation? If

so, the technician should lose their license. I'm thinking there must be

some misunderstanding because you would have been in severe respiratory

problems at that point. Regardless its clear you need oxygen along with

your CPAP. Get a copy of your sleep study report so you can read exactly

what it said.

I will tell you that when you get to the experts, get the appropriate

tests and labs and diagnoses, you'll feel so much relief. It won't make

you better but it will make you more comfortable because you'll have

knowledge and understanding and you'll be able to make the choices best

for yourself.

I don't know about the expertise at the University of Iowa. I don't know

of the doctor he was talking about either and whether he's part of an

Interstitial Lung Disease department. I do know within reasonable

distance of you, Mayo and the University of Chicago are Centers of

Excellence. I just know that I'd do whatever it took to get the most

expert exam, testing and diagnosis I could. I drove 900 miles once and

it was worth it and in January I plan on driving 1200 to get the best

IPF and Rheumatology departments I know.

> >

> > I am correcting something I typed here! It says I had 62 episodes

when

> tested for sleep apnea..That is wrong...I had 92 episodes an hour.

> >

> > Donna

> > (Iowa)

> >

> > ____________ _________ _________ __

> > From: mischievouskitten mischievouskitten@ ...

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Thu, November 26, 2009 7:12:21 AM

> > Subject: Update on Me

> >

> > First let me start this by saying Happy Thanksgiving to you all! I

> hope Each and everyone has a beautiful day! I have so much to be

> thankful for!

> >

> > I had the CT scans as ordered,the six minute walk,and the lung

> function,blood workup and the sleep apnea testing. I seen my Pulmodude

> > yesterday and hes what I know so far:

> >

> > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE. I

> have restrictive air. (I can get it out,but hard to get it in). I do

> have Interstitial Lung Disease. My Pulmodude believes he knows what

type

> it is but does not want to guess, he wants me to see a renowned

> specialist in the field who is also a professor as well as Dr in Iowa

> City. I do not remember his name LOL but I will let You all know his

> name next week.

> >

> > My 6 min walk ended with me needing 6 liters of oxygen to walk

instead

> of the 3 liters I am on for rest and being up. That has been changed

now

> to 3 liters when resting and 4 when up. I had the lung function only

44%

> lung function and only 44% of oxygen getting into blood. (Hope that

made

> sense)...

> >

> > My Pulmodude told me what I have is rare and He only gets maybe 4-5

> people a year in his office hence the reason to send me to Iowa City

to

> see this renowned Dr as the Pulmodude put it! The Pulmodude said he

did

> not want me to take any tests that were unnecessary another reason he

is

> sending me to Iowa City.

> >

> > My Pulmodude believes I need a lung biopsy and if so he told me it

> would be done on my side. He also told me if what they are seeing is

> scar tissue they cannot reverse that but they could try and give me

meds

> that may keep it from getting worse. If it turns out to be

inflammation

> it could be reversed.

> >

> > The Pulmodude told me these are some BIG DECISIONS! I am very afraid

> of needing the lung biopsy I have heard most talk about it on here. I

do

> not tolerate anesthesia well, I do not wake up from it too well...and

I

> end up with a severe sore throat and a very very bad cough after

things

> like this. There is a part of me that just does not think my body can

> really handle any more stress than its already going through.

> >

> > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62 episodes

> an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So Next

> week I get fitted for the mask to wear at bed and they will be

bleeding

> in my oxygen to it when I sleep.

> >

> > So this is my update thus far! It makes me tired to think about it!

> HAHA!

> >

> > Again -Happy Thanksgiving! !

> > Donna

> > (Iowa)

> >

>

November 26, 2009

Thank You Bruce, You are just full of good information and that is why I asked your input and thank you.My Pulmonologist did do his own CTs, and His own Lab as you said should be done. The appt. I had with him on Friday was the results on all these tests. He moved all appointments up so I could get the results quickly. My Pulmo is 45 minutes from me.Yes,, I had an Arterial Blood Gas,the Pulmo Dr ordered that certain blood test and I had to take my oxygen off for like 20 min and he told me the results.As for the sleep study and being told i was my lowest was 44 and that my oxygen dropped by 4%-I will get the papers to know this for sure by reading it.As soon as I get the Specialists name again (because

I did not write it down) I am going to do some research on him.I will keep you updated and thank you Bruce for this info and nsy you give me in the future.DonnaTo: Breathe-Support Sent: Thu, November 26, 2009 11:57:13 AMSubject: Re: Update on Me Mischievous Kitten