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Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1373
   Posted 5/23/2013 6:23 AM (GMT -6)   
Yes, I mean short of breath. I've been SOB almost 3 months, so this is mostly a vent. In March I saw my pulmonologist and one part of my pulmonary function tests (PFTs) was abnormal, but he attributed that to my having influenza two weeks prior.
 
Anyway, recently my rheumy wanted me to get a heart echo, so I saw a cardiologist who ordered the echo and cardiac PET. Last Friday while I was in the PET scanner and the test was completing, I had a reaction to the PET drug (persantine). My heart started racing and I couldn't catch my breath, so they gave me an antidote, a cup of coffee and sent me on my way. Later as I was driving I had to pull over because I was gasping for air and I had to call 911. They took me to ER where I was given a breathing treatment and observed until the persantine was out of my system (six hours).
 
I'm still SOB, seeing my pulmonologist again June 12. I get out of breath just watching people exercise. This sure is getting old. Thanks for listening. Love, Butterflake

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5407
   Posted 5/23/2013 12:39 PM (GMT -6)   
A cup of coffee??? That caffeine will make your heart race, what were they thinking?

I'm so glad you were able to pull over & get 911 assistance. That must have been horribly frightening.

Sure hope you get to feeling better soon, and please call if you ever have any issues like that again...I will drive you!!!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 11598
   Posted 5/23/2013 1:07 PM (GMT -6)   
Rediculious that they gave you coffee for an allergic reaction!

Do you know yet the reason for being short of breath?

I hope it doesn't turn out you have Lupus Lung (Shrinking Lung Syndrome) that I heard that people with Lupus and Asthma have a chance of developing. My lung doctor is watching me for it.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 352
   Posted 5/23/2013 5:33 PM (GMT -6)   
 
 
That sounds dreadfully scary.  I hope you are feeling better.  Sending you gentle ((((((((((((((((HUGS)))))))))))))
from the coast.
 
Laura

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1373
   Posted 5/26/2013 10:25 AM (GMT -6)   
Hi Ladies. Thank you so much for your replies. The PET scan crew (about 6 of them) said my reaction was fairly common and most folks do well with one dose of antidote and coffee. I forgot to mention that caffeine is also a mild antidote. Kinda like giving ADD patients drugs to rev up their system because that actually tires them and makes them able to focus.
 
Regardless, I think they should have made me wait in an area where I could be observed for a while.
 
My hubby offered to drive me, but I knew that I would be there for hours and didn't see the point. Besides, hubby and I were having a spat in which I basically said that if I could do x (which he said I should be able to do) then I could take myself for the tests. This resulted in him not coming to the ER except to pick me up and take me home. Obviously I'm still venting. He is usually the best caregiver anyone could ask for, but for the first time in many years we butted horns and wouldn't budge.
 
Thanks for the ride offer Lynnwood. I may take you up on it Sweetie. Laura the hugs are much appreciated and Joy I have follow-ups with my pulmonologist and cardiologist. I hate being SOB. Love, Butterflake

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2640
   Posted 5/28/2013 1:02 AM (GMT -6)   
Donna,

I'm so sorry that you had to go thru this. It sounds like it was a really scary situation (((hugs))). I totally can relate to the SOB stuff, do you have a oxygen percentage meter? I purchased mine from Walmart for like $37.00.

The reason I'm suggesting this is so that you cn start a log. When you are having SOB, you should check and see what your O2 stats are at. Write own the percentage, what you were doing when it started, and how long it took for the SOB to pass. This will greatly help the pulmonary Drs to figure out why you are having SOB.

I hope they figure it out quickly, and if I can be of any help, please don't hesitate to call me or email me. I'll try to answer any questions you may have. Feel better sweetie and keep us posted on how you're doing.

Hugs,
Barbara

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1373
   Posted 5/31/2013 7:12 AM (GMT -6)   
Thank you so much Barbara. I don't have an O2 sat meter, but every time mine is taken it's in the high 90s. My real problem is that the SOB doesn't go away. I'm getting sufficient oxygen, but never feel like I'm getting a full breath of air. My chest feels tight. During exertion I breathe rapidly and my chest feels tighter, but my O2 sat is still normal. It worries me so that's great incentive for me to continue with all these *%#& tests. You know the drill Sweetie. Love Ya, Donna

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 11598
   Posted 5/31/2013 9:01 PM (GMT -6)   
Do you have asthma, Donna?
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1373
   Posted 6/1/2013 9:53 AM (GMT -6)   
As of yet, I haven't been diagnosed with asthma, but I do have an inhaler. Of all the times I've used it, rarely has it helped. Another side note, I seem to have more trouble exhaling than inhaling. Thanks for asking Tater.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5407
   Posted 6/1/2013 10:24 AM (GMT -6)   
Another thought -- do you have the breathing thing they probably sent you home with after one of your hospitalizations? You blow thru it to see how strong your breathing is? If you have it, you might try exercising with it. If you don't have it, I bet you could purchase one online...I found them once when I was remembering the name of it...which I don't remember today. Sigh.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 352
   Posted 6/1/2013 5:27 PM (GMT -6)   
 
Hi Donna,
 
     I sometimes get SOB like that during allergy season.  I also got that sensation a few days before I went into atrial fibrillation and did not recognize that something was up with my heart.  I assumed it was allergies or Lupus and kept going on with my day.  Like you, my O2 sats are good, but I still have chest tightness and some SOB on breathing.  I do have calcifications in my lungs from a long standing history of bronchitis when I was younger.  From about age 4 to almost 27, I got bronchitis every year.  I have also had two bouts of pneumonia that caused scarring in my lungs, so whenever allergies hit or an infection strikes, I do get those sensations in my chest.  I hope they can figure out what is up with you.  Those are not pleasant sensations to have to cope with.  Lots of hugs!
 
Laura

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1373
   Posted 6/5/2013 1:07 AM (GMT -6)   
Hi Ladies. I saw my cardiologist today. I have a slight heart malfunction, but we both agree that the majority of my problem is going to be pulmonary. My heart issue is that during the diastolic relaxation my heart doesn't completely relax so the heart doesn't reach a full capacity of blood to pump out.
 
My cardiologist said this happens to everyone as they age, but I should not have it at 55. Anyway, I'll see him again in six months. I'll see my friendly and intelligent pulmonologist next week.
 
On a side note, I'm up to 3 grams of Cellcept each day and within the past few days I'm actually feeling like this flare that I've had for over a year is beginning to lift. I'm still SOB, but the pain isn't as bad and I have some energy. Please send me your prayers and positive energy. I am Sooooo ready for this flare to end. I love you too!  Donna
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