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Went For My Check-up...


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#1 LisaBulman

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Posted 28 November 2006 - 02:37 AM

Yesterday I went for my PFT and follow up with my rheumatologist. There has been no change in my PFT sance January. This is great because I went through 5 months of chemo and so far it is holding me steady. There is no known time how long it will continue to work so I will need to have pft's every 6 months.

My liver numbers are still all over the place. Sometimes they are sky high and then they come down a bit but still no where near normal. I'm bummed about this.

I was hoping to go on cellcept this visit but my doctor said no way. He said it would cause more problems than fix them. My chief complaint was fatigue and pure exhaustion. I am always tired but for the past two months, by the time noon comes around, I am wiped out. I will go lay down, making sure I set my alarm so I can get up to get the kids off the bus. It isn't a little nap I take, but I am out cold, drooling on my pillow kind of sleep. He said he is not sure what is going on so they took 5 tubes of blood, ordered an echo and in February I will have another PFT and see him agian. He asked me to call him on Wednesday to go over my test results.

Thanks for listening! :)

Hugs,
Lisa
Lisa Bulman
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#2 Steve

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Posted 28 November 2006 - 03:15 AM

Hi Lisa.
well good news about the PFT results at least! The chemo is probably helping to keep that in check, as you say. It did for me. Also, have you noticed a softening of the skin with it? It was something else on the plus side for me.
I don't like the sound of your liver results, they are strange, aren't they? Your doctor does sound like he is on the ball though, so I'm sure you can take a little bit of comfort in that. I hope he can reassure you on Wednesday when he goes over the results with you.
Thanks for keeping us posted, and I look forward to more good news from you.

Steve.
Take Care,

Steve Dickson
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#3 Heidi

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Posted 28 November 2006 - 03:15 AM

Hi Lisa,

Thanks for the update! I am glad to hear that your PFTS have not changed and it seems like the chemo worked for that! But, I am bummed to hear that your liver numbers are still elevated and you are still so exhausted. I do hope the blood work reveals something that can be treated to help you with the exhaustion! I hated that feeling when I had it...for me Plaquenil really addressed that overwhelming fatigue.

Please let us know what you learn when you call the doctor on Wednesday.

Warm wishes,
Heidi

#4 Patty

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Posted 28 November 2006 - 05:40 AM

Hey Lisa,
Great news on the PFT front!! I hope the doctors figure out whats going on with the liver. My numbers were very high so my GI ordered a biopsy. They came in but not what the doctors had expected so they sent them to Yale to get checked. I should know more around the holidays. Let me know what the blood tests show for you. I will keep fingers crossed its good news.
Hugs,
Patty
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Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#5 janey

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Posted 28 November 2006 - 07:17 AM

Lisa,
It's good to hear from you Darling. I'm so glad that your PFT's are holding steady. I'll keep my fingers crossed that it continues indefinitely. Now for the fatigue and exhaustion - I sure hope you blood test show something so your doctor can treat that. I remember those days prior to diagnosis. The fatigue was so bad you had to talk yourself into going to the bathroom and it ended up being a lot of work. Simply tasks were like climbing a mountain. I do remember you mentioned that you were not on an immunosuppresant. That's the symptoms that the MTX really helped me with and it happened fast. I'm curious as to why your doctor is dead set against Cellcept and probably any immunosuppresant from the sound of it. Research shows it helps especially people with lung problems. Does he know something that the rest of us don't know? Oh Well.

Please let us know the results of the bloodwork. Now go take a nap.

Big Hugs
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#6 Sweet

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Posted 28 November 2006 - 07:18 AM

Hey Lisa,

Good news about the PFT's! But sure sorry you are so fatigued....I can absolutely relate. It cramps my style. :lol:

Hang in there!

Warm and gentle hugs,

Pamela
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#7 LisaBulman

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Posted 28 November 2006 - 08:46 AM

Hi guys,
Thanks! He said he did not want to put me on an immunosupressant because he thinks it will cause my liver to be more damaged than it already is. :( I asked him about metho, planquenil, ivig....everything. He said right now, no way not until my liver numbers come back to some where around normal.

He tested my thyroid, cortisol, and a few other things..... Hopefully he'll have an answer on Wednesday. I did ask him what happens if all of the tests are normal do I just live with the extreme exhaustion? He said let's wait for the results of all the tests...echo too. He thinks my heart may not be pumping my blood enough or something.

Hugs,
Lisa
Lisa Bulman
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#8 emmie

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Posted 28 November 2006 - 06:31 PM

Hi Lisa,

I'm glad to hear about you PFT results. And your last post just answered all the questions I had...it really does sound like your doctor is doing all the right things. probably looking for anemia, thyroid probs, adrenal fatigue, etc. causing the fatigue. And of course most drugs are metabolized by the liver so.....

Here's hoping you get to the bottom of this sooner rather than later. That kind of fatigue is just so heavy or something. Just undescribable. Take care.

xoxo emmie