Frustrated

[Guest guest]

JoAnn,I know how you feel about having someone to talk too in person.Here's my HUG for you today.To: Breathe-Support Sent: Fri, January 15, 2010 6:36:24 AMSubject: Frustrated

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything

In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.

I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.

Jo Ann 53 MI UIP 9/07

[Guest guest]

Jo Ann,

You know you can vent here anytime you feel the need. This is that place where everyone understands your frustration and pain.

You are doing everything you can do to take care of yourself. Should you have to fight for every appropriate test? Of course not but the reality is many of us have to do just that. There are so many pulmonologists not to mention primary care doctors who know virtually nothing about interstitial lung disease. In a situation like yours all you can do is educate yourself and continue demanding what you know you need.

Consider yourself hugged!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Fri, January 15, 2010 6:36:24 AMSubject: Frustrated

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to

ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07

[Guest guest]

Jo Ann you know what I learned years ago while taking care of my father that we all have to be our own advocates for our own health or someone else. Because sometimes they just have way to many patience and things on their minds, and then with us some doctors out there just don't have the experience You are not alone we are all here for you Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support Sent: Fri, January 15, 2010 5:36:24 AMSubject: Frustrated

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything

In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.

I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.

Jo Ann 53 MI UIP 9/07

[Guest guest]

Jo ann- believe me i really understand your frustration but perk up! you did it! you got what you needed! You should give yourself a great big pat on the back for that! Maybe you should look around for another doctor? I do understand how you feel that maybe you should just give up but I hope you don't....it is hard work advocating for yourslelf but you are doing it! Yes! you are doing it. I don't live next to you but if ever you want to call and vent your frustration feel free. My phone number is and I live in Arizona which is on Azonia time...we don't change at the seasons. I have no idea where you are but please know you are not alone! JoyceR AZ birds

[Guest guest]

Don't gave up, I agree most of the doctors even the ones here in So Calif don't know crap about PF, I had the same issue go home and die, I do not think so... I am now on a transplant list at Cedars, if I would have listened to the first Pulmonary doctor and done nothing, I sure as heck would not have been given the option of transplant. They are terrible, terrible and know nothing about our disease and sure do not make the least effort to learn anything either. Keep fighting.. Carroll IPF 3/09I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07

[Guest guest]

I'm fortunate to have a knowledgeable, understanding, responsive, and caring pulmonary doctor. But even though his specialty is pulmonary he is a doctor of many patients not a doctor of IPF/PF research. That's why its important to see a lung specialist at a teaching center because they are into the research. The lung specialist I see at the UWMC has been the one to order most of my tests and some tests I've asked for based on what I have learned from this group.

I get frustrated too, but the disease is so unknown and affects a small majority of people. I believe the researchers are out there doing what they can for IPF/PF with what little funds they have. But it is what it is...unknown by most even in the medical community.

I have found discovered we do need to learn what we can about our disease and be involved in our medical care, maybe more so than others do with a different disease.

Like so many things in life we ultimately have to look out for ourselves, ask and sometimes demand what we need. But its a battle worth fighting for!!

Don't ever give up, just consider yourself smarter than others!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Fri, January 15, 2010 10:53:28 AMSubject: Re: Frustrated

Don't gave up, I agree most of the doctors even the ones here in So Calif don't know crap about PF, I had the same issue go home and die, I do not think so... I am now on a transplant list at Cedars, if I would have listened to the first Pulmonary doctor and done nothing, I sure as heck would not have been given the option of transplant. They are terrible, terrible and know nothing about our disease and sure do not make the least effort to learn anything either. Keep fighting.. Carroll IPF 3/09

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to

ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07

[Guest guest]

I told my PC that Dr. Raghu wanted me to see a rheumatologist. She thought I just had arthritis and she said they couldn't help that so she refused to refer me. Today I call a call. She had read Dr. Raghu's report and realized it wasn't just arthritis so she referred me. I'm waiting to hear from him. I'm supposed to have bloodwork because of the CellCept. She was suppose to get back to me on that too. She didn't so I'll wait 10 days and talk to my pulmo doc. Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to

ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07

[Guest guest]

Thank you for the info. I'll talk to my pulmo and he should be able to set it up in Newport which is where my primary is and much closer.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr.

to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07

[Guest guest]

Does anyone know what percentage of the population has PF?

Gale

To: Breathe-Support Sent: Sat, January 16, 2010 8:37:16 AMSubject: Re: Frustrated

there are so many people on this board, that i tend to forget it's still a rare disease

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr.

to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today.. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07

[Guest guest]

That's what I do too.  Every month!Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr.

to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07

[Guest guest]

That's what I do too.  Every month!Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr.

to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07

[Guest guest]

Joann,

I had to doublecheck the state in your signature to make sure we weren't sharing

the same doctors. Your experiences mirror exactly the kinds of situations I've

been going thru here in Calif with my Kaiser-Permanente doctors, not just the

ones treating my IPF but also the ones treating my collapsed heel. They don't

seem to know anything & I have to fight every single step of the way to get the

treatment I need.

Even when they finally order the treatment, they screw up. Once they sent me to

the wrong city for a scheduled CT scan. Another time, they told me to park on

one side of a huge medical campus-type facility when my test was apparently on

the other side, at least half a mile away. It was dark & after hours for most of

the facilities, so I had to wander around with no one to ask. Finally, 2

janitors found me so exhausted & out of breath that they were alarmed. They made

me sit on the ground for a while & then escorted me back to my car when I was

too embarrassed to accept a wheelchair ride.

On top of that, for the past year I've had to battle Verizon, AT & T, Sallie Mae

for my student loan & my Capital One credit card, all of which have been billing

me for charges that I didn't make. These aren't even stolen identity charges,

which would at least give them an excuse. These are their own screw-ups that

they even admit are their own screw-ups, but for some reason they can't seem to

get them taken off my bills. My Internet service was even disconnected at one

point because I wouldn't pay one of the charges. Of course, they admitted their

mistake finally & reconnected me, but now they're charging me a reconnect fee!

I won't even go into detail about Yahoo, which eliminated my most important

archive folder, which will take me weeks to re-create. They aren't admitting

responsibility, but their latest reviews show that they apparently did it to

thousands of others also.

So believe me when I tell you I understand your frustration. My first 14 months

after diagnosis have been nothing but misery. It doesn't look like the next 2-4

years that I supposedly have left are going to get any better though. From what

little I can get out of my orthopedic surgeon, my broken heel is collapsing & is

likely to stay mis-shapened & lame for the rest of my life. He hasn't mentioned

surgery or even rehabilitation, so apparently I'm going to have to start

fighting him for treatment too.

To add even more insult to injury, the monthly premiums that I pay for alone for

this medical service are more expensive than my monthly mortgage payments, which

I also pay for alone. My medical insurance costs more than my house! And that

doesn't even count the co-payments that I also have for every test & doctor

visit.

I wish we were neighbors & could commiserate together, Joann. I also don't have

anyone to vent to. Two of my sisters took me to their homes in Ariz when I first

broke both my feet. I know they love me & want to help, but they honestly don't

understand anything about our disease & think because I look OK, I must be OK

except for my collapsing heel. (To be honest, I think they were relieved to

finally see a physical reason for why I can't do things like I used to. And also

relieved to have something tangible they can do for me.)

Another sister just sent me an email saying she loves me & will do anything she

can to help me, but that I shouldn't fret over doctors not telling me every

little thing because they're probably trying to keep me thinking positively! I

love her dearly, but could she possibly bury her head any deeper in the sand?

(This is the sister who doesn't go to the doctor even for annual checkups

because she feels " fine " even though she weighs 250 pounds.) She's the

proverbial believer in " No news is good news. "

Well, I've definitely vented here this time. One thing I've learned is that this

Air Family will not only listen to us vent but they also understand what we're

going thru. Granted, we don't get a lot of physical contact, but we do get " air

hugs. " And nothing beats understanding.

Feel free to email me directly if you'd like.

Cees, S Calif

IPF/UIP 10/08

>

> I am so frustrated, I went for a 6min walk today at the hospital. When I got

there to sign in they tried to tell me I was at the wrong place I said no I am

supposed to be here. Finially she found my name but it was for PFT's, I said no

I am having a 6min walk, she called somebody on the phone and got it

straightened out. I sat down and I almost started crying there at the hospital.

I am so tired of always having to fight for any kind of treatment I get. I have

learned so much from this board, because of everyone here I know what I need, I

just have to fight to get anything

> In June I started Pulmonary Rehab and I could finially prove to my Dr. that I

needed 02. In July I started on 02, 2 lpm with exertion. I've known for a

while that that wasn't enough. In Dec. I finially got an oximeter to check my

sats. For the last couple weeks I have been checking my sats while walking, I

need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask

for the 6min walk test. They acted like I didn't know what I was talking about,

but I insisted that I have one. So that is why I am here today. I am so tired

of hveing to insist that I be given tests all the time. I think today was my

breaking point. I would like to say the .... with all of the doctors, just give

up on everything and sit home waiting to die. I just hate this disease, and the

doctors that don't know anything.

> I'm sorry about this I guess I just needed to vent. I don't have anybody at

home to talk. I wish I lived closer to somebody so we could get together and

talk. I feel so alone fighting this disease.

>

> Jo Ann 53 MI UIP 9/07

>

[Guest guest]

Cees, venting is good. It makes us feel better. A big air hug to you.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia IdahoSubject: Re: FrustratedTo: Breathe-Support Date: Saturday, January 16, 2010, 5:12 PM

Joann,

I had to doublecheck the state in your signature to make sure we weren't sharing the same doctors. Your experiences mirror exactly the kinds of situations I've been going thru here in Calif with my Kaiser-Permanente doctors, not just the ones treating my IPF but also the ones treating my collapsed heel. They don't seem to know anything & I have to fight every single step of the way to get the treatment I need.

Even when they finally order the treatment, they screw up. Once they sent me to the wrong city for a scheduled CT scan. Another time, they told me to park on one side of a huge medical campus-type facility when my test was apparently on the other side, at least half a mile away. It was dark & after hours for most of the facilities, so I had to wander around with no one to ask. Finally, 2 janitors found me so exhausted & out of breath that they were alarmed. They made me sit on the ground for a while & then escorted me back to my car when I was too embarrassed to accept a wheelchair ride.

On top of that, for the past year I've had to battle Verizon, AT & T, Sallie Mae for my student loan & my Capital One credit card, all of which have been billing me for charges that I didn't make. These aren't even stolen identity charges, which would at least give them an excuse. These are their own screw-ups that they even admit are their own screw-ups, but for some reason they can't seem to get them taken off my bills. My Internet service was even disconnected at one point because I wouldn't pay one of the charges. Of course, they admitted their mistake finally & reconnected me, but now they're charging me a reconnect fee!

I won't even go into detail about Yahoo, which eliminated my most important archive folder, which will take me weeks to re-create. They aren't admitting responsibility, but their latest reviews show that they apparently did it to thousands of others also.

So believe me when I tell you I understand your frustration. My first 14 months after diagnosis have been nothing but misery. It doesn't look like the next 2-4 years that I supposedly have left are going to get any better though. From what little I can get out of my orthopedic surgeon, my broken heel is collapsing & is likely to stay mis-shapened & lame for the rest of my life. He hasn't mentioned surgery or even rehabilitation, so apparently I'm going to have to start fighting him for treatment too.

To add even more insult to injury, the monthly premiums that I pay for alone for this medical service are more expensive than my monthly mortgage payments, which I also pay for alone. My medical insurance costs more than my house! And that doesn't even count the co-payments that I also have for every test & doctor visit.

I wish we were neighbors & could commiserate together, Joann. I also don't have anyone to vent to. Two of my sisters took me to their homes in Ariz when I first broke both my feet. I know they love me & want to help, but they honestly don't understand anything about our disease & think because I look OK, I must be OK except for my collapsing heel. (To be honest, I think they were relieved to finally see a physical reason for why I can't do things like I used to. And also relieved to have something tangible they can do for me.)

Another sister just sent me an email saying she loves me & will do anything she can to help me, but that I shouldn't fret over doctors not telling me every little thing because they're probably trying to keep me thinking positively! I love her dearly, but could she possibly bury her head any deeper in the sand? (This is the sister who doesn't go to the doctor even for annual checkups because she feels "fine" even though she weighs 250 pounds.) She's the proverbial believer in "No news is good news."

Well, I've definitely vented here this time. One thing I've learned is that this Air Family will not only listen to us vent but they also understand what we're going thru. Granted, we don't get a lot of physical contact, but we do get "air hugs." And nothing beats understanding.

Feel free to email me directly if you'd like.

Cees, S Calif

IPF/UIP 10/08

>

> I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything

> In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.

> I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.

>

> Jo Ann 53 MI UIP 9/07

>

[Guest guest]

Dear Cees, I feel so badly for you. It's bad enough to have this terrible disease let alone the added frustrations you have been going through. My heart goes out to you. I really wish we were all closer in miles so that we could either meet or phone each other. I thank God I found this group at least. Do keep your chin up Cees.----- "ceesnews" wrote:

>

> > > Joann,> > I had to doublecheck the state in your signature to make sure we weren't sharing the same doctors. Your experiences mirror exactly the kinds of situations I've been going thru here in Calif with my Kaiser-Permanente doctors, not just the ones treating my IPF but also the ones treating my collapsed heel. They don't seem to know anything & I have to fight every single step of the way to get the treatment I need.> > Even when they finally order the treatment, they screw up. Once they sent me to the wrong city for a scheduled CT scan. Another time, they told me to park on one side of a huge medical campus-type facility when my test was apparently on the other side, at least half a mile away. It was dark & after hours for most of the facilities, so I had to wander around with no one to ask. Finally, 2 janitors found me so exhausted & out of breath that they were alarmed. They made me sit on the ground for a while & then escorted me back to my car when I was too embarrassed to accept a wheelchair ride.> > On top of that, for the past year I've had to battle Verizon, AT & T, Sallie Mae for my student loan & my Capital One credit card, all of which have been billing me for charges that I didn't make. These aren't even stolen identity charges, which would at least give them an excuse. These are their own screw-ups that they even admit are their own screw-ups, but for some reason they can't seem to get them taken off my bills. My Internet service was even disconnected at one point because I wouldn't pay one of the charges. Of course, they admitted their mistake finally & reconnected me, but now they're charging me a reconnect fee!> > I won't even go into detail about Yahoo, which eliminated my most important archive folder, which will take me weeks to re-create. They aren't admitting responsibility, but their latest reviews show that they apparently did it to thousands of others also.> > So believe me when I tell you I understand your frustration. My first 14 months after diagnosis have been nothing but misery. It doesn't look like the next 2-4 years that I supposedly have left are going to get any better though. From what little I can get out of my orthopedic surgeon, my broken heel is collapsing & is likely to stay mis-shapened & lame for the rest of my life. He hasn't mentioned surgery or even rehabilitation, so apparently I'm going to have to start fighting him for treatment too.> > To add even more insult to injury, the monthly premiums that I pay for alone for this medical service are more expensive than my monthly mortgage payments, which I also pay for alone. My medical insurance costs more than my house! And that doesn't even count the co-payments that I also have for every test & doctor visit.> > I wish we were neighbors & could commiserate together, Joann. I also don't have anyone to vent to. Two of my sisters took me to their homes in Ariz when I first broke both my feet. I know they love me & want to help, but they honestly don't understand anything about our disease & think because I look OK, I must be OK except for my collapsing heel. (To be honest, I think they were relieved to finally see a physical reason for why I can't do things like I used to. And also relieved to have something tangible they can do for me.) > > Another sister just sent me an email saying she loves me & will do anything she can to help me, but that I shouldn't fret over doctors not telling me every little thing because they're probably trying to keep me thinking positively! I love her dearly, but could she possibly bury her head any deeper in the sand? (This is the sister who doesn't go to the doctor even for annual checkups because she feels "fine" even though she weighs 250 pounds.) She's the proverbial believer in "No news is good news."> > Well, I've definitely vented here this time. One thing I've learned is that this Air Family will not only listen to us vent but they also understand what we're going thru. Granted, we don't get a lot of physical contact, but we do get "air hugs." And nothing beats understanding.> > Feel free to email me directly if you'd like.> > Cees, S Calif> IPF/UIP 10/08> > > >> > I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything> > In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.> > I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.> > > > Jo Ann 53 MI UIP 9/07> >> >

>

>

[Guest guest]

Oh Cees Things really will be better in 2010. I know you are saying ya right. But remember we all really need to try to stay positive because it will just eat you up. Do me a favor and do this everyday, Find at least 5 things to be thankful for. I know that when I do this everyday I feel so much better. And you can't use the same things everyday.. GREAT BIG HUGS AND KISSESwish i were closer to you so I could come see you. Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support Sent: Sat, January 16, 2010 7:12:44 PMSubject: Re: Frustrated

Joann,

I had to doublecheck the state in your signature to make sure we weren't sharing the same doctors. Your experiences mirror exactly the kinds of situations I've been going thru here in Calif with my Kaiser-Permanente doctors, not just the ones treating my IPF but also the ones treating my collapsed heel. They don't seem to know anything & I have to fight every single step of the way to get the treatment I need.

Even when they finally order the treatment, they screw up. Once they sent me to the wrong city for a scheduled CT scan. Another time, they told me to park on one side of a huge medical campus-type facility when my test was apparently on the other side, at least half a mile away. It was dark & after hours for most of the facilities, so I had to wander around with no one to ask. Finally, 2 janitors found me so exhausted & out of breath that they were alarmed. They made me sit on the ground for a while & then escorted me back to my car when I was too embarrassed to accept a wheelchair ride.

On top of that, for the past year I've had to battle Verizon, AT & T, Sallie Mae for my student loan & my Capital One credit card, all of which have been billing me for charges that I didn't make. These aren't even stolen identity charges, which would at least give them an excuse. These are their own screw-ups that they even admit are their own screw-ups, but for some reason they can't seem to get them taken off my bills. My Internet service was even disconnected at one point because I wouldn't pay one of the charges. Of course, they admitted their mistake finally & reconnected me, but now they're charging me a reconnect fee!

I won't even go into detail about Yahoo, which eliminated my most important archive folder, which will take me weeks to re-create. They aren't admitting responsibility, but their latest reviews show that they apparently did it to thousands of others also.

So believe me when I tell you I understand your frustration. My first 14 months after diagnosis have been nothing but misery. It doesn't look like the next 2-4 years that I supposedly have left are going to get any better though. From what little I can get out of my orthopedic surgeon, my broken heel is collapsing & is likely to stay mis-shapened & lame for the rest of my life. He hasn't mentioned surgery or even rehabilitation, so apparently I'm going to have to start fighting him for treatment too.

To add even more insult to injury, the monthly premiums that I pay for alone for this medical service are more expensive than my monthly mortgage payments, which I also pay for alone. My medical insurance costs more than my house! And that doesn't even count the co-payments that I also have for every test & doctor visit.

I wish we were neighbors & could commiserate together, Joann. I also don't have anyone to vent to. Two of my sisters took me to their homes in Ariz when I first broke both my feet. I know they love me & want to help, but they honestly don't understand anything about our disease & think because I look OK, I must be OK except for my collapsing heel. (To be honest, I think they were relieved to finally see a physical reason for why I can't do things like I used to. And also relieved to have something tangible they can do for me.)

Another sister just sent me an email saying she loves me & will do anything she can to help me, but that I shouldn't fret over doctors not telling me every little thing because they're probably trying to keep me thinking positively! I love her dearly, but could she possibly bury her head any deeper in the sand? (This is the sister who doesn't go to the doctor even for annual checkups because she feels "fine" even though she weighs 250 pounds.) She's the proverbial believer in "No news is good news."

Well, I've definitely vented here this time. One thing I've learned is that this Air Family will not only listen to us vent but they also understand what we're going thru. Granted, we don't get a lot of physical contact, but we do get "air hugs." And nothing beats understanding.

Feel free to email me directly if you'd like.

Cees, S Calif

IPF/UIP 10/08

>

> I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything

> In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die.. I just hate this disease, and the doctors that don't know anything.

> I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.

>

> Jo Ann 53 MI UIP 9/07

>

[Guest guest]

BJ... I'm working my way through the posts and always read one from you. I have to ask, why are you waiting to call your pulmo doc? If you aren't getting the focus you need, CALL BACK! This medical apathy pushes my buttons!

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Beverley Joy

Sent: Friday, January 15, 2010 9:57 PM

To: Breathe-Support

Subject: Re: Frustrated

I told my PC that Dr. Raghu wanted me to see a rheumatologist. She thought I just had arthritis and she said they couldn't help that so she refused to refer me. Today I call a call. She had read Dr. Raghu's report and realized it wasn't just arthritis so she referred me. I'm waiting to hear from him. I'm supposed to have bloodwork because of the CellCept. She was suppose to get back to me on that too. She didn't so I'll wait 10 days and talk to my pulmo doc. Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00

[Guest guest]

Sher, I have an appointment with my pulmo doc. I am waiting for a call from a Rheumatologist. I haven't been to one before. My PC was thrilled about my dx from Dr. Raghu but she wasn't listening that day. She had to get the results from him before she GOT it. I gave up. I'll let my pulmo take care of things.I'm sorry to hear you are so tired all of the time. It sounds like me. I sleep late, too. This morning I got up at ten. A few days ago I shocked myself by sleeping until noon.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.143/2624 - Release Date: 01/15/10 04:47:00

[Guest guest]

>

>

>

>

>

>

> I am so frustrated, I went for a 6min walk today at the hospital. When I got

there to sign in they tried to tell me I was at the wrong place I said no I am

supposed to be here. Finially she found my name but it was for PFT's, I said no

I am having a 6min walk, she called somebody on the phone and got it

straightened out. I sat down and I almost started crying there at the hospital.

I am so tired of always having to fight for any kind of treatment I get. I have

learned so much from this board, because of everyone here I know what I need, I

just have to fight to get anything

> In June I started Pulmonary Rehab and I could finially prove to my Dr. that I

needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while

that that wasn't enough. In Dec. I finially got an oximeter to check my sats.

For the last couple weeks I have been checking my sats while walking, I need at

least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the

6min walk test. They acted like I didn't know what I was talking about, but I

insisted that I have one. So that is why I am here today. I am so tired of

hveing to insist that I be given tests all the time. I think today was my

breaking point. I would like to say the .... with all of the doctors, just give

up on everything and sit home waiting to die. I just hate this disease, and the

doctors that don't know anything.

> I'm sorry about this I guess I just needed to vent. I don't have anybody at

home to talk.. I wish I lived closer to somebody so we could get together and

talk. I feel so alone fighting this disease.

>

> Jo Ann 53 MI UIP 9/07

>

[Guest guest]

Thank You for your comments and Air Hugs I really appreciate them. I don't plan

on giving up, I was just frustrated and needed to vent. As you know some days

are better than others and we just need to vent somewhere. I love my Air Family

Here is a BIG HUG to you all.

Jo Ann 53 MI UIP 9/07

>

> I am so frustrated, I went for a 6min walk today at the hospital. When I got

there to sign in they tried to tell me I was at the wrong place I said no I am

supposed to be here. Finially she found my name but it was for PFT's, I said no

I am having a 6min walk, she called somebody on the phone and got it

straightened out. I sat down and I almost started crying there at the hospital.

I am so tired of always having to fight for any kind of treatment I get. I have

learned so much from this board, because of everyone here I know what I need, I

just have to fight to get anything

> >In June I started Pulmonary Rehab and I could finially prove to my Dr. that I

needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while

that that wasn't enough. In Dec. I finially got an oximeter to check my sats.

For the last couple weeks I have been checking my sats while walking, I need at

least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the

6min walk test. They acted like I didn't know what I was talking about, but I

insisted that I have one.. So that is why I am here today. I am so tired of

hveing to insist that I be given tests all the time. I think today was my

breaking point. I would like to say the .... with all of the doctors, just give

up on everything and sit home waiting to die. I just hate this disease, and the

doctors that don't know anything.

> >I'm sorry about this I guess I just needed to vent. I don't have anybody at

home to talk. I wish I lived closer to somebody so we could get together and

talk. I feel so alone fighting this disease.

> >

> >Jo Ann 53 MI UIP 9/07

> >

> >

>

[Guest guest]

>

> Jo Ann,

>

> I wish I could give you a hug, you feel like I did a few weeks ago. Hang in

there, I won't say it will get better because it just seems that nowadays you

have to double check everything yourself. But YOU HAVE THE RIGHT TO GET THE

PROPER TREATMENT. Do not let anyone, including yourself, make you think

elsewise. Frustrating Yes! But if you just give up They Win and I'm way too

stubborn for that! Call me anytime, I never use all my minutes .

>

> Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosis, Diabetes, and now a RA like autoimmune component, yadda

yadda yadda.

>

>

> " Life is not a journey to the grave with intentions of arriving is a pretty,

well-preserved body, but rather to skid in broadside, thoroughly used up,

totally worn out, chocolate in one hand, Margaritas in the other, loudly

proclaiming " Holy **** What a ride! " . "

>

Hi Dyane

Thank You I feel better now I hope your doing okay also

I have no intention of giving up and letting them win. I will keep FIGHTING.

Next time I feel down I will give you a call. I have you saved in my cell

phone. A BIG HUG to you.

Jo Ann 53 MI UIP 9/07

[Guest guest]

Hi JoAnn,

I have liquid O2. I have a large (Mother Tank) in the garage. When we go out I fill a little bottle that I can wear on a belt around my waist and I also fill a Helios Marathon unit. The small waist unit (stroller) in neat but it only can work on "pulse", it does not have a "continuous flow" option. The larger Marathon does. The larger unit has straps to wear it on your back as a backpack. Both are light weight, but of course the smaller one is really light. Nice to use in stores etc.They come out about once a month to refill the (Mother Tank) in the garage. Of course, I use the big clunker concentrator in the house with a 50 foot tube that gets me anywhere I want to go inside. The backpack works well when I go salmon fishing on my boat in the Summer because it frees up both hands do do things on the boat. Give me a call if you want to know more about the Liquid

O2.

Bob 70, IPF 1/09, 5 Bypasses 7/01

Subject: Re: FrustratedTo: Breathe-Support Date: Sunday, January 17, 2010, 3:56 PM

>

> > > > > > I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything> In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5

lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.> I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.> > Jo Ann 53 MI UIP 9/07>

[Guest guest]

Cees,Vent away, that's what we're here for. The air family is the BEST! I wish I was there in person to help you-we did live in Santee in S. Cal until last week. Now we are in Iowa-where it's freezing. Keep on keeping on girlfriend-we're here for you.Kathy ILD/Hypersensitivity pneumonitis 3/08

>

> > > Joann,> > I had to doublecheck the state in your signature to make sure we weren't sharing the same doctors. Your experiences mirror exactly the kinds of situations I've been going thru here in Calif with my Kaiser-Permanente doctors, not just the ones treating my IPF but also the ones treating my collapsed heel. They don't seem to know anything & I have to fight every single step of the way to get the treatment I need.> > Even when they finally order the treatment, they screw up. Once they sent me to the wrong city for a scheduled CT scan. Another time, they told me to park on one side of a huge medical campus-type facility when my test was apparently on the other side, at least half a mile away. It was dark & after hours for most of the facilities, so I had to wander around with no one to ask. Finally, 2 janitors found me so exhausted & out of breath that they were alarmed. They made me sit on the ground for a while & then escorted me back to my car when I was too embarrassed to accept a wheelchair ride.> > On top of that, for the past year I've had to battle Verizon, AT & T, Sallie Mae for my student loan & my Capital One credit card, all of which have been billing me for charges that I didn't make. These aren't even stolen identity charges, which would at least give them an excuse. These are their own screw-ups that they even admit are their own screw-ups, but for some reason they can't seem to get them taken off my bills. My Internet service was even disconnected at one point because I wouldn't pay one of the charges. Of course, they admitted their mistake finally & reconnected me, but now they're charging me a reconnect fee!> > I won't even go into detail about Yahoo, which eliminated my most important archive folder, which will take me weeks to re-create. They aren't admitting responsibility, but their latest reviews show that they apparently did it to thousands of others also.> > So believe me when I tell you I understand your frustration. My first 14 months after diagnosis have been nothing but misery. It doesn't look like the next 2-4 years that I supposedly have left are going to get any better though. From what little I can get out of my orthopedic surgeon, my broken heel is collapsing & is likely to stay mis-shapened & lame for the rest of my life. He hasn't mentioned surgery or even rehabilitation, so apparently I'm going to have to start fighting him for treatment too.> > To add even more insult to injury, the monthly premiums that I pay for alone for this medical service are more expensive than my monthly mortgage payments, which I also pay for alone. My medical insurance costs more than my house! And that doesn't even count the co-payments that I also have for every test & doctor visit.> > I wish we were neighbors & could commiserate together, Joann. I also don't have anyone to vent to. Two of my sisters took me to their homes in Ariz when I first broke both my feet. I know they love me & want to help, but they honestly don't understand anything about our disease & think because I look OK, I must be OK except for my collapsing heel. (To be honest, I think they were relieved to finally see a physical reason for why I can't do things like I used to. And also relieved to have something tangible they can do for me.) > > Another sister just sent me an email saying she loves me & will do anything she can to help me, but that I shouldn't fret over doctors not telling me every little thing because they're probably trying to keep me thinking positively! I love her dearly, but could she possibly bury her head any deeper in the sand? (This is the sister who doesn't go to the doctor even for annual checkups because she feels "fine" even though she weighs 250 pounds.) She's the proverbial believer in "No news is good news."> > Well, I've definitely vented here this time. One thing I've learned is that this Air Family will not only listen to us vent but they also understand what we're going thru. Granted, we don't get a lot of physical contact, but we do get "air hugs." And nothing beats understanding.> > Feel free to email me directly if you'd like.> > Cees, S Calif> IPF/UIP 10/08> > > >> > I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything> > In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.> > I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.> > > > Jo Ann 53 MI UIP 9/07> >> >

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[Guest guest]

I know how you feel. join me on im chat when you need to. I knew I had bad lungs

over a year ago now I know how bad it is.

MIKE BLAZER

> >

> >

> >

> > I am so frustrated, I went for a 6min walk today at the hospital. When I

got there to sign in they tried to tell me I was at the wrong place I said no I

am supposed to be here. Finially she found my name but it was for PFT's, I said

no I am having a 6min walk, she called somebody on the phone and got it

straightened out. I sat down and I almost started crying there at the hospital.

I am so tired of always having to fight for any kind of treatment I get. I have

learned so much from this board, because of everyone here I know what I need, I

just have to fight to get anything

> >

> > In June I started Pulmonary Rehab and I could finially prove to my Dr. that

I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a

while that that wasn't enough. In Dec. I finially got an oximeter to check my

sats. For the last couple weeks I have been checking my sats while walking, I

need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask

for the 6min walk test. They acted like I didn't know what I was talking about,

but I insisted that I have one. So that is why I am here today. I am so tired

of hveing to insist that I be given tests all the time. I think today was my

breaking point. I would like to say the .... with all of the doctors, just give

up on everything and sit home waiting to die. I just hate this disease, and the

doctors that don't know anything.

> >

> > I'm sorry about this I guess I just needed to vent. I don't have anybody at

home to talk. I wish I lived closer to somebody so we could get together and

talk. I feel so alone fighting this disease.

> >

> >

> >

> > Jo Ann 53 MI UIP 9/07

> >

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[Guest guest]

finally catching up on long posts

Cees

this is the place to vent

wish i could help but ... in a similar boat

forget the 2- 4 years left

where is your expiration date stamped?

i haven't been able to find mine

besides check out some of the other dates of dx

one person was dx 13 years ago

someone else was dx 8 years ago

the incident that led to my diagnosis happened 4 years ago this month

but i know that i have had this disease a lot longer than that

it's time to start thinking of this as a chronic illness that can go on indefinitely

i'm sure the broken feet have really decreased your ability to cope

don't know what to say about that

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: FrustratedTo: Breathe-Support Date: Saturday, January 16, 2010, 8:12 PM

Joann,I had to doublecheck the state in your signature to make sure we weren't sharing the same doctors. Your experiences mirror exactly the kinds of situations I've been going thru here in Calif with my Kaiser-Permanente doctors, not just the ones treating my IPF but also the ones treating my collapsed heel. They don't seem to know anything & I have to fight every single step of the way to get the treatment I need.Even when they finally order the treatment, they screw up. Once they sent me to the wrong city for a scheduled CT scan. Another time, they told me to park on one side of a huge medical campus-type facility when my test was apparently on the other side, at least half a mile away. It was dark & after hours for most of the facilities, so I had to wander around with no one to ask. Finally, 2 janitors found me so exhausted & out of breath that they were alarmed. They made me sit on the ground for a while & then

escorted me back to my car when I was too embarrassed to accept a wheelchair ride.On top of that, for the past year I've had to battle Verizon, AT & T, Sallie Mae for my student loan & my Capital One credit card, all of which have been billing me for charges that I didn't make. These aren't even stolen identity charges, which would at least give them an excuse. These are their own screw-ups that they even admit are their own screw-ups, but for some reason they can't seem to get them taken off my bills. My Internet service was even disconnected at one point because I wouldn't pay one of the charges. Of course, they admitted their mistake finally & reconnected me, but now they're charging me a reconnect fee!I won't even go into detail about Yahoo, which eliminated my most important archive folder, which will take me weeks to re-create. They aren't admitting responsibility, but their latest reviews show that they apparently did it

to thousands of others also.So believe me when I tell you I understand your frustration. My first 14 months after diagnosis have been nothing but misery. It doesn't look like the next 2-4 years that I supposedly have left are going to get any better though. From what little I can get out of my orthopedic surgeon, my broken heel is collapsing & is likely to stay mis-shapened & lame for the rest of my life. He hasn't mentioned surgery or even rehabilitation, so apparently I'm going to have to start fighting him for treatment too.To add even more insult to injury, the monthly premiums that I pay for alone for this medical service are more expensive than my monthly mortgage payments, which I also pay for alone. My medical insurance costs more than my house! And that doesn't even count the co-payments that I also have for every test & doctor visit.I wish we were neighbors & could commiserate together, Joann. I also

don't have anyone to vent to. Two of my sisters took me to their homes in Ariz when I first broke both my feet. I know they love me & want to help, but they honestly don't understand anything about our disease & think because I look OK, I must be OK except for my collapsing heel. (To be honest, I think they were relieved to finally see a physical reason for why I can't do things like I used to. And also relieved to have something tangible they can do for me.) Another sister just sent me an email saying she loves me & will do anything she can to help me, but that I shouldn't fret over doctors not telling me every little thing because they're probably trying to keep me thinking positively! I love her dearly, but could she possibly bury her head any deeper in the sand? (This is the sister who doesn't go to the doctor even for annual checkups because she feels "fine" even though she weighs 250 pounds.) She's the proverbial believer in

"No news is good news."Well, I've definitely vented here this time. One thing I've learned is that this Air Family will not only listen to us vent but they also understand what we're going thru. Granted, we don't get a lot of physical contact, but we do get "air hugs." And nothing beats understanding.Feel free to email me directly if you'd like.Cees, S CalifIPF/UIP 10/08>> I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called

somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anything> In June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like

to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.> I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.> > Jo Ann 53 MI UIP 9/07>

[Guest guest]

BJ... keep sending the updates. I always watch for your posts.

Sure hope the financing comes through for the potential buyer....and I hope the mold is gone. That can sure kill a sale!

Hugs.

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Beverley Joy

Sent: Sunday, January 17, 2010 11:15 AM

To: Breathe-Support

Subject: Re: Frustrated

Sher, I have an appointment with my pulmo doc. I am waiting for a call from a Rheumatologist. I haven't been to one before. My PC was thrilled about my dx from Dr. Raghu but she wasn't listening that day. She had to get the results from him before she GOT it. I gave up. I'll let my pulmo take care of things.I'm sorry to hear you are so tired all of the time. It sounds like me. I sleep late, too. This morning I got up at ten. A few days ago I shocked myself by sleeping until noon.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho

I am so frustrated, I went for a 6min walk today at the hospital. When I got there to sign in they tried to tell me I was at the wrong place I said no I am supposed to be here. Finially she found my name but it was for PFT's, I said no I am having a 6min walk, she called somebody on the phone and got it straightened out. I sat down and I almost started crying there at the hospital. I am so tired of always having to fight for any kind of treatment I get. I have learned so much from this board, because of everyone here I know what I need, I just have to fight to get anythingIn June I started Pulmonary Rehab and I could finially prove to my Dr. that I needed 02. In July I started on 02, 2 lpm with exertion. I've known for a while that that wasn't enough. In Dec. I finially got an oximeter to check my sats. For the last couple weeks I have been checking my sats while walking, I need at least 5 lpm to keep my sats in the low 90s. So I called my Dr. to ask for the 6min walk test. They acted like I didn't know what I was talking about, but I insisted that I have one. So that is why I am here today. I am so tired of hveing to insist that I be given tests all the time. I think today was my breaking point. I would like to say the .... with all of the doctors, just give up on everything and sit home waiting to die. I just hate this disease, and the doctors that don't know anything.I'm sorry about this I guess I just needed to vent. I don't have anybody at home to talk.. I wish I lived closer to somebody so we could get together and talk. I feel so alone fighting this disease.Jo Ann 53 MI UIP 9/07

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