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Post by deedee484 on May 2, 2014 13:05:36 GMT -5
NYB..... I understand what you are saying and I might agree if I had NO other symptoms! But I do. The fevers are just one of the many things I have going on. My local ID Dr actually wants me off all antibiotics so he can do some more blood cultures after the antibiotics are out of my system. He also agreed with sending me to the Cleveland Clinic. My appt is June 16th!
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Post by Girlrocker on May 2, 2014 17:19:14 GMT -5
JUNE 16th???!!! NOT acceptable, can they get you in sooner, do they realize how long this has been going on?! UGH, I'm glad you have the appointment, but I think its way too long for you to have to wait!
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Post by newyorkbitch on May 2, 2014 18:38:20 GMT -5
What else is going on besides the fevers? Thorough and detailed list please.
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Post by deedee484 on May 8, 2014 11:58:55 GMT -5
Sorry friends....still struggling along! I finished my antibiotics a week ago...last Thursday night and felt really great for 3 days and temps were normal! I went to Walmart Sat, church and a Baby shower Sun, stayed home Monday and met my scrapbooking girls on Tuesday. By Tuesday night I was chilling and feeling weak and fatigued...and sure enough fevers all evening and night....up to 102.8. I have been fevered since then! Yesterday was 101 all day and last night was 101.8! Today it's running about 101 again. Someone told me the fevers could still be from the pneumonia I had a month ago ( even though the chest X-ray is now clear and my PCP says my lungs sound clear! Does that sound possible? I talked to Dr K and have sent him scans and CDs and reports and he said I do not show the signs of what Lisa is going through! So that's good but still back to square one.....no one knows what is wrong! Trying to keep liquids going down...protein is def decreased (started a heaving process on about the 3rd or 4th drink now of my protein drinks) and food is pretty much a Greek yogurt and a couple bites of soft easy-to-digest foods. I have a slow emptying stomach and it's hard to eat "real" food. My GI dr said I just have to adapt my eating to that! She also told me to cut out most of my fat and eat very low fat! Really?? She has no clue about the DS! NYB..... Here are my symptoms the best I can say.... Fever Cough Sinus Drainage ( I take a Claritin every morning) Weakness and fatigue Elevated pulse (over 100 without activity) Low blood pressure. ( 100/60 85/55 etc) Nausea Severe pain in back of left shoulder Stomach pain (worsens after eating) Next week I see my hematologist on Tuesday. That's all I know for now! Hurry and get well Lisa! Glad they found your problem and was able to treat it! Hopefully before you know it you will be feeling great! XO
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Post by newyorkbitch on May 8, 2014 12:10:27 GMT -5
Did you start doing the PPI morning and night?
Have you insisted on a gastric emptying study?
Have you seen a cardiologist?
What I do not understand is how you can have all these symptoms and not have a doctor who is working with you ALL THE TIME to figure out what is going on. Where is your internist in all of this?
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Post by deedee484 on May 8, 2014 14:42:24 GMT -5
Did you start doing the PPI morning and night? Have you insisted on a gastric emptying study? Have you seen a cardiologist? What I do not understand is how you can have all these symptoms and not have a doctor who is working with you ALL THE TIME to figure out what is going on. Where is your internist in all of this? NYB.....I got the dr to rewrite my script for Omeprazole for 20g 2x a day. Picking that up today. She told me to take one in am before breakfast and one before dinner and add a Zantac at bedtime! Does that sound right?? I insisted on the gastric emptying test and she said NO because the pics (meds in my stomach 16 hours later) PROVED that is what I have! So we have to treat it with Diet!! I'm Monday I will be having an Echocariagram to look for infection a around the heart and valves! I have LOTS of Drs and Specialists who keep sending me back and forth to each other! All of them are perplexed! Hence the reason I'm going to Cleveland Clinic! Thanks for your reply! I just don't know what to do!
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Post by bboop on May 8, 2014 17:02:56 GMT -5
Honey, you have been through the ringer...I hope the Cleveland Clinic can get you all sorted out. Here's wishing you the speedy recovery you so deserve.
Hugs and more hugs.
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Post by bboop on May 8, 2014 17:03:36 GMT -5
Oh, yes, be sure to ask about the slow emptying stomach...something besides diet needs to be done. Just wanted to remind you. Hugs.
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Post by newyorkbitch on May 8, 2014 17:06:11 GMT -5
I think the prilosec spaced 12 hours apart sounds right. As for the added zantac….can't hurt. Given your current circumstances, I'd do it. If things quiet down, you can stop the zantac and see how you do on just the two prilosec doses. That's what I would do.
I agree that something other than diet needs to happen…
And I'm glad you're having a cardiac exam.
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Post by deedee484 on May 8, 2014 19:29:48 GMT -5
Bboop.......Thanks for the much needed hugs! I agree that diet isn't the full answer for the slow emptying problem. Hopefully I will get answers soon.
NYB....I'm glad about the Echocardiagram too! And hopefully the Omeprazole and Zantac together will help. Thanks for your help.
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Post by melanie74 on May 8, 2014 20:33:25 GMT -5
So heartbroken to hear this struggle continues for you - I am praying for you!! Wish I had more words of wisdom.
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Post by willowrayne on May 8, 2014 21:19:55 GMT -5
Dee, I have nothing to add but my support and encouragement. Good luck and hang in there, I hope you are better soon.
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Post by goodkel on May 8, 2014 23:43:28 GMT -5
I wish you were at the Cleveland Clinic right now.
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Post by deedee484 on May 9, 2014 17:37:26 GMT -5
So heartbroken to hear this struggle continues for you - I am praying for you!! Wish I had more words of wisdom. Thank you so much Melanie!
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Post by deedee484 on May 9, 2014 17:38:59 GMT -5
Dee, I have nothing to add but my support and encouragement. Good luck and hang in there, I hope you are better soon. Thank you Willowrayne! Just knowing you guys care is important to me!
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Post by deedee484 on May 9, 2014 17:57:20 GMT -5
I wish you were at the Cleveland Clinic right now. Thanks Kel! I'm trying to get through this weekend, Monday I have the Echocardiagram......and if I still have no answers I am gonna just have to go to the Cleveland Clinic ER since my appt is still over a month away! I'm just hangin in the best I can for now.
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Post by melanie74 on May 9, 2014 20:28:36 GMT -5
I think going to their ER sounds like a good option as you're still running a fever and have those other symptoms!!
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Post by Taterweight on May 9, 2014 20:49:03 GMT -5
Diane, I know I haven't chimed in lately, but I'm always keeping you in my prayers and reading your updates! Wish I had answers to give. I feel so helpless. Hang in there though, I'm praying that Cleveland will finally have some answers for ya. In the meantime, enjoy the echo...nothing more funny/humiliating than a stranger fiddling with your boobs when you feel like crap!
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Post by Girlrocker on May 9, 2014 23:50:11 GMT -5
I think going to their ER sounds like a good option as you're still running a fever and have those other symptoms!! I think so too! If i lived by you I'd be driving you there! You are always in my thoughts sweet friend, I want you diagnosed, treated and healthy. Hugs to you.
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Post by Deleted on May 10, 2014 2:16:39 GMT -5
Do you still have your gall bladder? pain after eating is a sign, also there are two kinds of gall stones, ones of calcium, and ones of cholesterol. The later does not show in an exray, or a CT.
Have u had a HIDA Scan? For GB function?
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Post by deedee484 on May 12, 2014 18:15:44 GMT -5
Marc....no I do not have a gallbladder! It was removed after my original WLS! Plus most of my pain is on the left side! With my gallbladder it was middle-right side! Thanks. I hope you are doing better and healing well!
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Post by deedee484 on May 12, 2014 18:47:25 GMT -5
Had my Echocardiogram this morning to check for infection around my heart. The tech wouldn't tell me anything except that a Cardiologist will see the test results tonight and my Dr will have the results by tomorrow. Very anxious to know the results esp after dealing with high fevers again this week! Trying to stay strong and think about happier times! My children all took me out to eat at Cracker Barrel for Mothers Day. I managed to eat a few bites (and had lots of leftovers to take home). Was fun just getting out and feeling a little normal again! My kids and grandkids are such a blessing to me and can always find a way to make me smile! THEY are what makes me wanna get better! Anyways last night fever went up to 103.1...... Pretty miserable all night but was eagerly awaiting the Echocardiogram this morning! Hopefully I get answers tomorrow!!! I also see my Hematologist tomorrow morning! I'll keep you updated my friends. Thanks for you love and support! <3
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Post by newyorkbitch on May 12, 2014 20:59:15 GMT -5
How are you doing with the twice a day Prilosec and bedtime zantac?
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Post by melanie74 on May 13, 2014 0:01:48 GMT -5
So happy to hear you were able to enjoy Mother's Day. I have to tell you that I admire you for getting out and trying to see the bright side. I will admit that I probably would have sat alone in my pity party all day if it was me. Sorry though that you're still suffering. Maybe this has been asked before - do you have your appendix? Have you had a "girl check" recently? I am not saying that accounts for the left side pain - just trying to think of anything that might not have been looked at yet. And trust me - I am no doctor ... Even though I do watch a lot of grey's anatomy. LOL. Hang in there girl - still praying!
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Post by deedee484 on May 13, 2014 11:23:03 GMT -5
How are you doing with the twice a day Prilosec and bedtime zantac? I've really noticed no differences yet! Maybe in time it will sow improvements.
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Post by deedee484 on May 13, 2014 11:29:02 GMT -5
So happy to hear you were able to enjoy Mother's Day. I have to tell you that I admire you for getting out and trying to see the bright side. I will admit that I probably would have sat alone in my pity party all day if it was me. Sorry though that you're still suffering. Maybe this has been asked before - do you have your appendix? Have you had a "girl check" recently? I am not saying that accounts for the left side pain - just trying to think of anything that might not have been looked at yet. And trust me - I am no doctor ... Even though I do watch a lot of grey's anatomy. LOL. Hang in there girl - still praying! Thanks Melanie! I really wanted to be selfish and stay at home but I didn't! I was actually glad afterwards cause it did help me feel better...emotionally! I have had my gallbladder and appendix both removed and have had a full hysterectomy! Still waiting on test results today so maybe I will find something out! Thanks for your help! Trust me even the Drs are having trouble figuring out what is going on!
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Post by fallds on May 13, 2014 14:09:20 GMT -5
I am not on here much anymore but I always check up on your situation when I do come on... you are in my prayers and I sincerely hope you get some answers very soon so you can feel good again! All this weight you have lost and you are too sick to enjoy it!!!! Keep us posted and know that I am thinking of you.
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Post by deedee484 on May 16, 2014 21:07:53 GMT -5
I am not on here much anymore but I always check up on your situation when I do come on... you are in my prayers and I sincerely hope you get some answers very soon so you can feel good again! All this weight you have lost and you are too sick to enjoy it!!!! Keep us posted and know that I am thinking of you. Thank you so much Fallds!! Sometimes I just feel lost in this whole thing! Def losing weight ....and people are like "wow".....but they realize soon hoe much I am struggling! Don't get me wrong.....I have a few good days....just more bad days! Echocardiogram results came back normal....so no infection around the heart muscle or valves! That's good! Still can't find source of infection though. I just keep praying It will all just DISAPPEAR.....NO MORE INFECTION...NO MORE FEVERS.....but so far that hasn't happened! Yesterday I had a Bone Marrow Aspiration and Biopsy! Not pleasant to go through but I want to be WELL again so whatever it takes! Won't know results til June 3rd since they are gonna do some extensive testing on the samples they drew! Still pretty sore today and fever spiked tonight at 103.3! Going to bed early and hoping tomorrow is better! THANK YOU ALL for your care and concern! I know how draining it is on everyone worrying about me....but it does help me to know you care! Thanks Fallds!! Hope you are doing well and enjoying your success too! I'll keep you guys all updated as best I can!
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Post by Girlrocker on May 17, 2014 10:54:53 GMT -5
Ugh, look at you now below 190 and you have to suffer through all of this I'm just heartsick for you Diane, I so wish they knew what is causing you all these problems, what its connected to. I want to believe they WILL get to the bottom of it, and that this will eventually be a distant memory for you. I know my first six months after my RNY were miserable - much different problems than you're having, and at least they found my problems, and I was fixed; but I feel for you. I wish so much I was there to hang out with you and go to appointments. I wish you could be at the Cleveland Clinic NOW. Keeping you in positive healing thoughts.
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Post by deedee484 on May 17, 2014 20:07:24 GMT -5
Ugh, look at you now below 190 and you have to suffer through all of this I'm just heartsick for you Diane, I so wish they knew what is causing you all these problems, what its connected to. I want to believe they WILL get to the bottom of it, and that this will eventually be a distant memory for you. I know my first six months after my RNY were miserable - much different problems than you're having, and at least they found my problems, and I was fixed; but I feel for you. I wish so much I was there to hang out with you and go to appointments. I wish you could be at the Cleveland Clinic NOW. Keeping you in positive healing thoughts. Thank you Sharyl. Still no answers but I'm sure it will get figured out one of this days. I wish you could be here too. But I'm sure they will be able to help me at the Cleveland Clinic. Just wish it was sooner! Thanks for your healing thoughts and kind words!!
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