Frustrated

[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]

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---

Subject: Re: FrustratedTo: Breathe-Support Date: Friday, January 15, 2010, 11:16 PM

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!

From: Carroll Brissette <cabrissette@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: 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]

Beverley

the pulmonary gave me a long term prescription for blood work because of the cellcept

the local hospital, has on going blood work prescriptions in a file, i just sign in and they do the test

i do not need a new prescription everytime

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, 12:57 AM

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]

Sher, I still haven't heard anything. I got my weekly update today but it kept saying the page can't be found. All of the mold and bird stuff should be gone or at least sealed in. But I've had housekeepers and I'm sure there are still places they haven't cleaned. I:m a clutterbug so it's hard and they don't do deep cleaning. I've been wearing a mask and trying to get some of it around my computer desk and file cabinets but I seem to be having some side affects from the CellCept. I oonly have one blood pressure pill so I have to get to town tomorrow and get some. I hope I feel better. There never was any mold showing on my walls. It was all in my rotten ceiling and roof. They lied to me when I bought the house about several things. One was the r0oof and my inspector didn't catch it.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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[Guest guest]

BJ...Your house has really been a burden for you hasn't it! And I'm presuming that you tried to get satisfaction from the USDA or the previous builders/contractors who did faulty work. BTW... there is a program on TV that I love watching, called "Holmes on Homes" and the contractor goes in and repairs/replaces a previous contractor's faulty/illegal work. Sure wish there were more like this guy.

Do you have the email for Dr. Raghu's assistants? You can email them and they will talk to Dr. Raghu about your condition. At the very least, CALL them BJ and let them know you suspect a reaction to the med.

Feel better soon!

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

From: Beverley Joy

Sent: Wednesday, January 20, 2010 7:38 PM

To: Breathe-Support

Subject: Re: Frustrated

Sher, I did have it inspected. The mold was in the rotten roof and the roof is gone and has been replaced. I paid for it with some help from the USDA. I know they lied because they told me the very slight droop in the ceiling was caused from a leak in the skylights. The skylights were fixed and the problem solved. Sure! When I noticed the beam over my head starting to sink I got a USDA loan to get it fixed. When the carpenter's were working on the roof they took pictures all of the way. When they removed the ceiling you could see where they had removed the skylights and connected new wood to the rotten roof. That's how they fixed it. I could have sued but I was living on $800 a month. I tried to get Legal Aid and they said it wasn't over $5,000 so I would have to go to small claims court and be my own lawyer, make out my own papers and drive 40 miles each way to the county court house. I decided I couldn't do it. Apparently Legal Aid isn't what people think it is. I am so sick tonight. I know it is side affects from the CellCept Dr. Raghu put me on. I also let him talk me into taking 5mg of Prednisone again and my blood sugar was low this morning and high this afternoon so it's looking like my Diabetes might be back . I started out with 90 e-mail to go through so I had better get to reading.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

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.730 / Virus Database: 270.14.151/2633 - Release Date: 01/19/10 09:49:00

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