Just Diagnosed Last Week, Oxygen, Biopsy, Disability
Posted 16 February 2007 - 06:54 AM
Posted 16 February 2007 - 07:32 AM
Wow! You do have a lot of information coming at you fast. I am sure you are feeling pretty overwhelmed. But as someone said another thread, just try to take one day at a time. Please do let us know what you find out from the MUGA test.
Posted 19 February 2007 - 05:16 AM
Wow, you have an awful lot to deal with at once! Were you undiagnosed, or misdiagnosed, for a long time? How are you dealing with all this?
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Posted 19 February 2007 - 06:15 AM
I don't know how I missed this post - sorry. Wow, this is coming at you fast isn't it? Have you started the 0xygen yet? I'm really sorry this is all happening so quickly. just remember that it might all even out after time. These symptoms etc can come in flares and may level off.
Please let us know how you are doing when you have time, or feel up to it.
Posted 19 February 2007 - 10:37 AM
Posted 19 February 2007 - 10:47 AM
Sure looks like you have a doctor that is really going after nailing down what is and what isn't going on. That's great! I know there are going to be lots and lots of tests here in the beginning, but those baselines are so important, so hang in there.
There are several people on the forum on SSD so maybe they'll chime in. If you decide that's what you want to do, I'll find some threads where it's discussed.
Please let us know how you appointments and test results go. Yes I agree - we have to maintain a positive attitude and win each battle one at a time.
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Posted 19 February 2007 - 12:44 PM
Posted 22 February 2007 - 09:16 AM
Posted 22 February 2007 - 09:45 AM
I am so sorry you are having to deal with all of this! Wow! Another diagnosis to add to your list. I hope you can get in to see the pulmonary doctor at the Univ. of Miami as soon as possible. It sounds like your rheumatolgist is being proactive for you, so that is good. Please do keep us posted on when your appointment is and what you learn.
Posted 22 February 2007 - 10:12 AM
Oh I am so sorry you have all of this going on. Getting into pulmonary dept. at Univ. of Miami sounds like a great plan. I'm glad your primary care physician is taking good care of you and directing you to the right places.
Hang in there my friend.....one day at at time.
Posted 01 March 2007 - 02:13 PM
Posted 01 March 2007 - 05:49 PM
Take it easy,
Posted 01 March 2007 - 06:19 PM
Try to get copies of all of your test results from your doctors including your bloodwork. If you can, or have someone help you do it, take notes of what the doctors tell you after each visit or phone call. I have found with a lot going on at once, it really helps me to have things written down. There's no way to remember it all.
Also write down questions you have as they occur to you. I keep a little tablet on my night stand, in the kitchen, in the bathroom and on the table next to my recliner. I know if I don't write it down immediately, I'll forget it! Then take your questions with you to the dr. or call if they are urgent. (I also have to write down the things I need to take care of or want to do because I forget that too!)
I hope you have some supportive family or friends around you. It's especially tough right now when you are at the beginning of the journey. Keep posting often. Don't be afraid to ask questions or vent your anger or express your fears. We do understand.
Posted 02 March 2007 - 01:16 AM
Welcome and ditto to all you have heard here. They all had great advice. I am sorry you are dealing with so much all at once. It does calm down after awhile and you can improve so hang in there. You are in a great place for information. Susie54
Posted 02 March 2007 - 04:39 AM
Hang in there, I send my blessings.