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So Frustrated!


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#21 bookworm

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Posted 05 October 2007 - 07:21 AM

Lisa,
I'm joining this thread late, but just wanted to add my heartfelt good wishes for your quick recovery and for that of your family.

Mary in Texas

#22 Sheryl

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Posted 06 October 2007 - 12:57 AM

Good morning Lisa, I have been busy catching up on several days postings. I hope you are back home and recovering from your episodes of breathing difficultly. That is one thing we can't seem to live without. I am so glad you decided to get some help instead of starving your body of so much needed oxygen. I hope you are back home and resting until you have to take care of your childrens situations. I know you feel like you need to be their everything. They understand your situation and are just happy to have your near them or in the same room even though you can't do everything for them. It is not always what you do for someone. It is just being there. Let them be near you also. If they can help that is great if not just knowing you are all together under the same roof is security in and of itself. I sure hope you are stable now. Let us know what was decided and what help you received. You are in my thoughts. I send soft hugs and warm breezes to you. Sheryl
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#23 Margaret

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Posted 06 October 2007 - 04:57 AM

Hi Lisa ,

How are you doing today? I hope you got some sleep last night......even if it was in the hopsital. Keep us posted. Been thinking of you.

Take care, Everyone.
Margaret

#24 Sheryl

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Posted 06 October 2007 - 05:46 AM

Do you think Lisa might have phneumonia? Sorta sounds like what I have had in the past. Elephants standing on your chest. Yeap! Still thinking about you girlfriend. More hugs and more hugs. Sheryl
Strength and Warmth,
Sheryl

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#25 LisaBulman

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Posted 07 October 2007 - 04:17 AM

Hi everyone,
THANK YOU for all of your support and kind words. I was released from the hospital yesterday and still didn't sleep that well at home. In the hospital I think I slept for about two hours total. It is so noisy in there and really, what is the point of them waking you at 5am to take medication?? It was for my GERD... I don't get up at 5am to take it, so why do they wake you up? It doesn't make sense to me. Anyway. I had a chest xray, 2 echo's (one in the er and a full one the next day), a cat scan with contrats, 5 ekg's and a walk test, plus medical class listening to my lungs twice a day. Good news, I don't have fluid around my heart, there is no pulmonary embolism, no pulmonary hypertension, no pneumonia and my o2 stats were stable the whole time. They did find fibrotic changes in my lungs so they are assuming that is why I am short of breath. They will call me tomorrow with an appointment for a pft and we'll go from there. My regular rheumatologist is on vaca in Italy and is out for another week but I saw another rheumatologist from his office plus two of the fellows, who all specialize in sclero.

I am off to go lay down! Thank you all!! This is what this board is about, support, encouragement and sometimes being pushy to get others to do what they know they should but don't!!!

Hugs,
Lisa
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#26 janey

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Posted 07 October 2007 - 04:54 AM

Lisa,
Welcome home! Sounds like you got a full bodywork while in the hospital. Glad to hear that they didn't find any serious problems, but I know it's still frustrating to not be sure what is really going on. With a stable 02 stat (I'm assuming stable normal), you must be getting enough O2 through those alveoli. It will be interesting to see the results of your pft. Do they plan to do a HRCT? It's my understanding that's on of the best tests for seeing those fibrotic changes,

So are you breathing any better? I hope you get plenty of rest today. You deserve it. But don't forget to take the GERD medications at 5 am. If that's when the hospital gave it to you, then that's probably when you should be taking it. NOT!!!!! :lol:

Big Hugs,
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#27 debonair susie

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Posted 07 October 2007 - 06:55 AM

I'm glad to read that the testing was thorough and their findings were as they were... and finding a reason for you SOB was a coups too.
Looks as though yoou know what your body needs... rest!
Feel better!
Healing Hugs,
Susie
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#28 jefa

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Posted 07 October 2007 - 08:02 AM

Ah, so good that you are back home where you can get some rest. That is if you take advantage of that opportunity and don't jump headlong into the supermom routine. :) Anyway, glad that they were able to test so thoroughly and rule out so many possible causes. We missed you lots, but do take it easy.
Warm wishes,
Jefa

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#29 Shelley Ensz

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Posted 08 October 2007 - 06:18 AM

Hi Lisa,

I'm overjoyed that you are out of the hospital...and glad they plopped you in there, too! Difficulty breathing is nothing to be taken lightly in your condition.

I hope you are still considering putting up an OUT SICK sign on your frig for the whole month. You'll need it just to recuperate from the hospital.

It is great to have you back!!
Warm Hugs,

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#30 LisaBulman

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Posted 08 October 2007 - 12:03 PM

Hi again,
I have my pft scheduled for Friday morning. I truly wish I could put an out sick sign up by there is no way I can. We have way too much going on (yes I know this is part of my problem) but my kids have made commitments and there is no way out of them. Plus Emma was invited to join the dance team at her studio, you are supposed to be 10 but they see great potential in her so they invited her a year early. Anyway, we are going on a trip with them this month so she can take a class at the Broadway Dance Center in NY. Of course it is already paid for so we are going! Maybe I will just cut back on housework. :)

Great to be back, but I am still having difficulty breathing and feel out of sorts.

I'll keep you all posted!

Hugs,
Lisa
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#31 Shelley Ensz

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Posted 10 October 2007 - 10:27 AM

Hi Lisa,

That's wonderful that Emma gets to go to a class at Broadway Dance Center! I'm sure you'll all have a terrific time with that trip. Cutting back on housework sounds like a great plan. ;)

I hope your PFT goes okay on Friday. Too bad we can't study up for all these tests, eh?
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#32 MicheleM

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Posted 10 October 2007 - 11:15 AM

I'm glad you're okay Lisa! I know what you've been going through - me too! Haven't done an ER or hospital stay ... It's soooooooo hard to know what to do when especially when breathing is the issue. I've gone back & forth with this for years and hope you find a solution for yourself when you see the PFT! So sorry that you're going through this but you are not alone! Michele
Soft hugs your way,

Michele

#33 Lauriejill

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Posted 16 October 2007 - 10:47 AM

Lisa,
My son has Chiari Malformation as well .... has had it since he was 9 years old, now 30. He has had decompression surgery at UCLA 4 years ago. But he recent MRI shows that the tonsil size is the same as pre-surgery. He also complains of swallowing issues..? There is an active Chiari support group on line if you need one.
Laurie jill