Re: Re: Update on my lungs

[Guest guest]

Unfortunatly I am very very familiar with pleurisy =/ This is definately not

that. My pleurisy and my pleural effusion is on the bottom left lung. Whatever

is going on now, I have cloudy spots all over my CT of my lungs, I am wheezing

like MAD, and both entire lung cavities feel like they are full of burning icy

hot. Cough is now non productive, although the first few days were full of blood

streaked sputum.

I am very glad you had no admission to the hospital. I am trying to av oid that.

I do NOT want to spend new years and my bday in the hospital!

 ~Keilia~

www.mdjunction.com

" Being deeply loved by someone gives you strength, while loving someone deeply

gives you courage. " - Lao Tzu

 

________________________________

To: Stillsdisease

Sent: Wed, December 30, 2009 8:53:32 AM

Subject: Re: Update on my lungs

 

The primary documented Still's lung involv1ment in the literature is pleuritis

(aka pleurasy) or inflammation of the pleural tissue which is the space between

the lungs and the body cavity. The pain can be excrutiating. That is a Rheumy

thing to deal with. Although a good primary could treat the symptoms (prednisone

can help that inflammation) . The other lung conditions are similar to those

seen as secondary to RA and other connective tissue/autoimmune diseases. These

fall into the category of ILD or Interstitial Lung Diseases. There is also a

rare condition called Macrophage Activation Syndrome.

My Rheumy and my Pulmonologist work hand in hand to deal with the lung

complications in my case.

I agree that the ER should call in a pulmonary consult should you appear in the

ER again. Ask for one.

Tom from PA

ps I made my first ER visit of 2009 this past Sunday for cellulitis in my hand.

IV antibiotic and oral Bactrim and Keflex. Good news is no admission. But I was

hoping to stay away from the place for the whole year, since 2008 sucked so

badly. Stupidly I did delay the ER visit, hoping to set the new personal record,

so it was worse than if I had gone in the day after Christmas.

>

>

> I have been looking everywhere and cannot seem to find any info on what KINDS

of lung involvement there is with still's?

>

[Guest guest]

 

I have to also agree with Tom Uncle fuzzy on this one! As a side note pleurisy

may have affected the lower lobe of one lung before but it may now be including

a whole lung or even both now. The blood streaking is also worrisome and should

also be pressed on the ER along with the calling of a Lung specialist. I know it

is not how any one would want to start off the New Year or there B day but it is

still better I would think then how you’re feeling right now.

 Good luck and press the issue

Hugs

 

the redneck

Marty G.

[Guest guest]

I would never go to the er for pain management =/ My issue is, whatever it is,

pneumonia, whatever, is lots lots worse. I can no longer even eat at all. Yes,

the pain is very, very bad. The wheezing is, too. I am more concerned with

surviving it than anything else, thnough.

I dont work, I am on disability, so I am good on that front.

Also, I would never fake chest pain - didnt think anyone had advised me to do

so...

The worst of my pain right now is NOT the pluerisy. Ive had that a billion

times, and that - all it takes to get rid of is a few deep breaths. This

is deep, constant, pain. Like my lungs have been filled full of icy hot. Now,

also, it feels like someone is squeezing my lungs together. Now, I was diagnosed

with pnuemonia, put on antibiotics and steroids - and I have done nothing but

get worse. My PCP says to see the pulmo. Pulmo says to go to ER. ER wont even

see me, they say to go to PCP. Everyone keeps shoving me off on someone else. =/

And no one will even help me at all in the meantime.

 ~Keilia~

www.mdjunction.com

" Being deeply loved by someone gives you strength, while loving someone deeply

gives you courage. " - Lao Tzu

________________________________

To: Stillsdisease

Sent: Thu, December 31, 2009 4:09:07 AM

Subject: Re: Update on my lungs

 

The ER is NOT an appropriate place to go for pain management. I realize that you

may be in excruiating pain, but most ERs won't do anything for you. I ran in to

this issue last month when I had a REALLY problem, i.e., my morphine pump ran

out and I didn't know it. I laid on a bench in the ER in a fetal position. Not

only did I not get ANYTHING to help me, but the ER doc actually said to me, " If

you don't have a heart attack, broken limb, or gun shot wound, wait until the

next day to see your own doctor. We are not equipped to deal with your sort of

situation. " This from UCLA Medical Center!! Where they had my records on the

COMPUTER right there!!!

Also, so not ever SAY you are having chest pain if you aren't. And if your chest

pain is not a heart attack (i.e., you've got pleurisy and you've had it before),

do not act like you might be having a heart attack if you know that's not the

case. Like the boy who cried wolf, the next time you need the ER, they won't

believe you.

If you truly cannot wait for pain medication, have the ER doc call your regular

doc and discuss it so that you don't look like you're a junkie with drug seeking

behavior as you mentioned.

It's a far better idea to have at home different levels of medication for

break-through pain. My doc let me have a prescription for LIQUID oxycontin which

I can put under my tongue and have in to my system quickly. There are also

Fentanyl lollipops and morphine liquid available. With chronic pain, it's far

better to be prepared for those bad days.

Lastly, in the US, you can't fire someone for being ill. That is unless you are

an " at will " employee (or on probation). You might need to take a week or two

off work to get used to your pain meds. (My ex is a photographer and handles the

machines and chemicals so I understand your concern.)

Good luck with this, but in the future, make yourself prepared. Prepared is

forarmed.

[Guest guest]

Oh - I would love to be prepared - but I cant be prepared if no one will help me

in the first place =-/

 ~Keilia~

www.mdjunction.com

" Being deeply loved by someone gives you strength, while loving someone deeply

gives you courage. " - Lao Tzu

________________________________

To: Stillsdisease

Sent: Thu, December 31, 2009 4:09:07 AM

Subject: Re: Update on my lungs

 

The ER is NOT an appropriate place to go for pain management. I realize that you

may be in excruiating pain, but most ERs won't do anything for you. I ran in to

this issue last month when I had a REALLY problem, i.e., my morphine pump ran

out and I didn't know it. I laid on a bench in the ER in a fetal position. Not

only did I not get ANYTHING to help me, but the ER doc actually said to me, " If

you don't have a heart attack, broken limb, or gun shot wound, wait until the

next day to see your own doctor. We are not equipped to deal with your sort of

situation. " This from UCLA Medical Center!! Where they had my records on the

COMPUTER right there!!!

Also, so not ever SAY you are having chest pain if you aren't. And if your chest

pain is not a heart attack (i.e.., you've got pleurisy and you've had it

before), do not act like you might be having a heart attack if you know that's

not the case. Like the boy who cried wolf, the next time you need the ER, they

won't believe you.

If you truly cannot wait for pain medication, have the ER doc call your regular

doc and discuss it so that you don't look like you're a junkie with drug seeking

behavior as you mentioned.

It's a far better idea to have at home different levels of medication for

break-through pain. My doc let me have a prescription for LIQUID oxycontin which

I can put under my tongue and have in to my system quickly. There are also

Fentanyl lollipops and morphine liquid available. With chronic pain, it's far

better to be prepared for those bad days.

Lastly, in the US, you can't fire someone for being ill. That is unless you are

an " at will " employee (or on probation). You might need to take a week or two

off work to get used to your pain meds. (My ex is a photographer and handles the

machines and chemicals so I understand your concern.)

Good luck with this, but in the future, make yourself prepared. Prepared is

forarmed.

[Guest guest]

Keilia

 Have your Pulmo doc call the Er of your chouseing and then go there now no more

games you can not do this any more so please stop make the call and go1 you can

also go let them know he sent you and they are to call him asap!

 now I will tell you some thing I held back . On Feb ! of this year I lost my

sister to a lug something. she was short of breath it hurt to breath and she

used the words felt like icy hot had filled her lungs1 this started one year ago

today so get on that phone and call most things the sooner the better it is for

you and the faster they can treat them and this time you have your doc behind

you and you can tell the ER that !

now get

hugs and the best to you and you better let us know

the redneck

Marty G.

Experience: that most brutal of teachers. But you learn, my God do you learn.---

C.S.