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11:18:00 PM CDT
Feeling Anxious
Hearing Silence.....no one is around
PFT results
What a month. Last week I was scheduled for the CT Scan and actual PFT study. Prior to that I had had blood work and sputum cultures done trying to identify the virus/bacteria causing me to be so short of breath and the cause of the cough. The blood work came back within normal limits...no elevate white count....heck...even my Hct and Hmg were normal for the first time in maybe a year. I was actually hoping for an infection this time....well maybe the CT would show a pneumonia that the doctor just couldn't hear through the hardened tissue.
The day came for the CT...I waited all day till it was time to go and get it over with...NPO four hrs prior, etc. etc. I spent an hour on the bed of the scanner while they stuck me six times trying to find a vein for the contrast to go into. Usually I give them 2-3 sticks then I call it quits or find someone else to try. I just wanted these test results so badly that I was more patient. The sixth one was it though....no vein and no more patience. There was no one else there that could try and I wasn't letting them go to the neck or leg, so we had to cancel the test. I have an indwelling port, but nine times out of ten these labs say no one there can access it :(
I called the doctor the next morning and had them work on finding somewhere else I could go to get the Scan. I also went to the office for the Pulmonary Function Tests that day and while I was there they made some calls and got me right into another diagnostic lab for the CT....that day!! Success....they got the vein and were alot more professional too. I was determined to work as hard as I could to at least meet the same results as my last PFT, six months prior. I was very surprised to find it was harder than ever to blow air into those machines and pant and do everything else that is required, but I did it as hard as I could. Then the six minute walk....without my oxygen :( I only made it 900 steps in six minutes and stopped once. My po2 stayed around 84-85 as an average. Another insite into what is going on. My last walk I had come down from 1300 to 1100 steps...so this is another decrease.
Today I went in for all those results. My total lung capacity dropped 13 points :( That is more than it has ever dropped. FEV's dropped slightly and the DLCO dropped three. My total lung capacity is now 2% of predicted. That is pretty low...and I am apprehensive. He wants to repeat the sputum culture/sensitivity and see if maybe there is something new since two wks ago growing in the lungs, since he did hear more noise in the lower lobes today. He diagnosed me with Bronchitis today and wanted to try a triple antibiotic regimen, but I am allergic to the family of two of the drugs (Rocephin) and something else, so he told me to take 750mg of Levaquin, wait for the culture reports and he will talk to me Friday about what he finds.
He is hoping that the cough will go away and any infection will clear up on the increased antibiotics so maybe he can get me back to where I was a month ago. He said he didn't want to talk, today, about what it means as far as the PF goes, if the antibiotic doesn't work. I already know what he doesn't want to say...the disease has taken a big downward spiral and there isn't much room for any more loss of lung capacity.
The funny thing is, I tried to talk to a couple friends about this....I just wanted to tell someone I was worried...everyone just wants to say they are sure it is an infection and I will be fine. I know they have the best of intentions...but I want to be heard and I want to be able to talk about the "what if" which is actually a 50% possibilty.
No one listens or hears....
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Dear Jan... Guido sent me over to offer you some comfort.
I understand completely how you must feel when you are in a very scary place and that you need to offload the terrible stress and worry that you are carrying alone, out of love for your family and friends. But you know something?....Just you go ahead and stamp your feet and rant and rave. I sobbed for two days when I found out I had cancer and afterwards at low moments I drew attention to myself' if that's what you want to call it, by sobbing my heart out again. There was only my husband to see this as I kept, like you, a brave face on it most of the time. Its a real painful place to be in when you are facing the possibility of your own demise. And why shouldn't we just offload some of the stress kept inside, so that we appear normal and'brave' to friends and family. We are not brave....we are scared witless and just need someone there to tell that to. They are not in 'that place' thank God so don't know how to cope with it either. Just know that you have such friends here in Jland who through experience, sadly, can understand and be there for you to talk to. There are many of us who have gone through these 'black holes of despair'.
Please don't feel alone or feel that you cannot talk about whatever is worrying you.
I will be adding you to my prayer list and keeping you in my thoughts daily.
You can e-mail me anytime too if you feel like talking. God Bless!
Jeanie -
Just wanted to stop by & let you know, that I am here for you. To support you & pray for you/with you. I suffer from several chronic & debillitating illnesses & also fighting cancer,so I hear you...the pain & heartache you're going through. Please email me anytime you need someone to talk to, I'm just a mouse click away.
May God bless you,
Sugar
http://journals.aol.com/sugarsweet056/SUGARSLIFE/
Guido (pharmolmo) sent me over. -
Jan,
I often hear from people who need bloods taking frequently that half the time they make an absolute dog's dinner of it. I am sorry to hear your physical condition has deteriorated - basically to the minimum. Please remember that an allergy to Rocephin means all penicillins are out of the question, including the newer derivatives (like Rocephin).
It is my opinion that you can write in your blog the way you feel about your situation. You don't have to excuse or apologise. You're a wee bit on the edge, so there is no point in beating about the bush. As you said, 50% chance of the "what if" scenario is being realistic. Of course you would like someone to say it'll be alright. But, I think you know that things are heading definitely in the opposite direction.
Forgive me for being harsh and perhaps taking your comfort away. -
ok...I need to just step back from the situations sometimes and remember I wasn't actually born a Princess so I need to get over myself and throw myself back into the trenches and deal with it myself!!
Thank you for helping me keep it real :) Now I will try to return to my recliner for a few more hours of rest.....
6/28/07 5:17 AM
love and hugs
Katie
http://journals.aol.co.uk/kat