I want to scream, I need to keep my energy!....I apologize in advance for Venting!

[Guest guest]

Hi my friends,

I want to scream on top of my lungs, I need to keep my energy levels stable.....one suggestion though when your dr's writes a referral for a test better check the paper and once at the appointment ask to see for the test that was ordered, if it's not what you have discussed with your dr....call your dr ASAP.

At X-Rays does your PF show or it comes back Normal? Does it always show even if it's in the early stages of the disease?

As you know I had CT Scan of the Lungs last week to check if my PF is stable, has progressed....Wishfull thinking if it's gone lol!

I got a copy of the CT Scan report, as I said I'm still upset, I have to keep my energy levels stable because tonight in ER they couldn't rule out if a blood is present or not. Once again I received Blood Thinners. SOB is getting worse and if I treat to breath in/breathe out a lot of times, I get very dizzy.

Why I'm so upset:

CT Scan was supposed to check if my PF was stable, progressed etc...and compared it to the previous one in March/07.

What do they check me for:

Rule out Pulmonary Stenosis, no previous comparison for CT Scan for Pulmonary Stenosis....

For some of you that may want to know what the results: Mild subsegmemental atelectasis at the bases bilaterally. Normal Pulmonary artery on CT. If there is oigoing clinical concern regarding pulmonary artery stenosis, a functional study using echocardiogram or MRI is suggested.

Asked my GP, I said why did they check me for Pulmonary Stenosis....it was supposed to be Pulmonary Fibrosis. The office told me they called and confirmed x3 with technician it was Pulmonary Fibrosis. Asked her to re-do the CT Scan with the right diagnosis she said "NO".

Anyways, before I went over to the hospital, I called them and left a message "How can you make a mistake like that, when it was confirmed several times, you were supposed to check for Pulmonary Fibrosis." I went over to the hospital with the copy of the CT and spoke with the person who made the actual appointment....said she never received a call confirming the diagnosis....and was apologizing to me....

I told her please stop don't apologize to me or make excuses because this is a mistake you made and I demand you fix it now and re-do the CT Scan as it was supposed to be done originally. She said dr has to re-order it again....I said my dr won't do it again! So what are you going to about it....

She started apologizing again and once again I told her "please this is a mistake you made and I wanted fixed now"...Anyways she called the Head of CT and I spoke to her....

I said to the head of CT, I want you to go back and review the CT Scan and check for the Pulmonary Fibrosis and I want you to compare it with the previous one from March/07.

She said it will take 3 days for the comparison to be made because they have to e-mail the radiologist. As I was talking to her and to another person because I was standing, I was feeling very faint.

Had a nurse check my Oxygen level it was stable..I was seen anyways by the ER physician, and apparently he couldn't rule out a blood clot. So tommorrow morning I have to return back for the CT Scan...because apparently the machine was not working and if tommorrow morning it's not working, I will have to go back at night.

I received an injection of blood thinners again...I have to watch out for bleeding

Yesterday I had my follow up PFT's nothing much has changed...that's what the RT told me.

DLCO from 74% is up to 79%

FEV1 from 104 has dropped down to 103

FVC from 108 has dropped down to 105

TLC from 81% has dropped to 80%

VC from 108 has dropped down 105

ERV from 123 has dropped down to 101

GAW from 89, it has dropped down to 76

FIVC from 96 it has dropped down to 89

FEF 25%: from 94 has dropped down to 92

FEF50%: from 124 has dropped down to 117

FRC PL: from 90 it has dropped down to 79

PIF: from 3.68 has dropped down to 2.19

PEF: 90 no change

VA from 4.19 has dropped down to 4.16

IVC from 3.27 has dropped down to 3.16

Please once again, read the medical papers....to make sure you're receiving the treatment you're supposed too....even if you trust that person writting them up.

Take Care All

Irene

Raynaud's Disease 09/07

PF 03/07 Canada

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