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Post by meq815 on Apr 13, 2014 19:54:56 GMT -5
Wow that blows, Deedee. But I can't help but be a little relieved that you are where you are, now someone can figure this the hell out!
Prayers and positive energy for healing coming your way!
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Post by Girlrocker on Apr 13, 2014 20:05:31 GMT -5
Oh Diane, I am so sorry, you've been in the hospital all this time pneumonia?! And what blood numbers weren't good? I'm glad the ER nurse made you get looked at. It sounds like at last your team of doctors are on the same page, I HOPE They figure out what is going on. Please keep let us know how you're doing if you're feeling up to it, and if you aren't, but want someone to update for you, let me know. Thinking healing thoughts for you, really want this over for you already! Gentle hugs sweet friend.
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indianamom
Full Member
Posts: 210
Surgery Type: DS
Surgery Date: January 17, 2014
Surgeon: Dr. Vivek Prachand (Univ. of Chicago)
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Post by indianamom on Apr 13, 2014 20:56:13 GMT -5
Oh my goodness Diane... I'm sorry your not feeling well. Sounds like the nurse gave you some helpful advice. I hope they figure this out soon. You've been through so much....you are one tough cookie!
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Post by deedee484 on Apr 13, 2014 21:27:24 GMT -5
Thank you Mary Ellen, Sharyl and Indymom!! I truly hope they find something out this time! Will update later about the scopes I'm having done tomorrow! Thanks for all your encouragement!!
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Post by Mariposa(Heather) on Apr 13, 2014 22:26:34 GMT -5
Diane, I'm sorry that you are in the hospital! I sure hope that they will be able to get the bottom of this more quickly with you there! Sending good thoughts your way. Hugs, Heather
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Post by Taterweight on Apr 14, 2014 0:18:47 GMT -5
Awwwww Diane! I'm so sorry that you have pneumonia on top of it all! Keeping you in my prayers that you finally get some answers and most of all feel better! Hang in there!
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Post by goodkel on Apr 14, 2014 5:21:58 GMT -5
I am so relieved that you are in the hospital and they are beginning to take this seriously at long last.
Insist on staying there until they have a diagnosis.
Thank goodness they caught the pneumonia. Gerd, my arse.
Hopefully they will find the cause and put an end to this once and for all.
Hang in there and know that we are all pulling for you and sending you healing energy.
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Post by amydroe on Apr 14, 2014 6:23:33 GMT -5
Oh Diane you've been so strong through all this madness. Hang in there and demand the answers you deserve. I hope today is the day they find what had been making you so sick. Hang in there! Sending good vibes your way!
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Post by deedee484 on Apr 14, 2014 9:33:47 GMT -5
Thank you Heather, Resa, Kel and Amy for all your support! I will be having my scopes pretty soon here! Sure hope they figure something out.....getting so tired and discouraged about everything . Will post some time later! Thank you all again!!
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Post by Girlrocker on Apr 14, 2014 9:48:59 GMT -5
Good luck with the scopes, Diane, sending you tons of 'we figured this $hit out and we're fixing her' vibes. Big hugs to you.
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Post by melanie74 on Apr 14, 2014 12:43:35 GMT -5
Diane - so sorry to hear you're still struggling so much, but very happy to hear that at least you're being taken seriously and they are doing what they can to find some answers -- I really do hope you get past this without much more of a fight with your health care providers… how draining that is!! Get some rest, and feel better soon.
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Post by teachermomolp on Apr 14, 2014 13:12:14 GMT -5
Let us know Diane. We are waiting to hear. Start getting better NOW, friend!
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Deleted
Deleted Member
Posts: 0
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Post by Deleted on Apr 14, 2014 18:42:50 GMT -5
Sorry to hear are still struggling, Dianne but know this. Pneumonia is typically pretty easily cured with the right antibiotic (i know there are viral and bacterial, but Cameron has had pneumonia 3 different times in the last three years and all resolved quickly once diagnosed).
Did you have the pelvic and chest CT? Honestly I am not sure what they are looking for with the scopes from both ends, but good you are having them to be safe....I just hope you had a CT as well.
Silly question but have they ruled out appendix? I have heard of slow leakers causing infections.
Anyway, don't let them kick you out until they fix you.
Get better quickly!
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Post by jpcello on Apr 15, 2014 5:16:19 GMT -5
Hang in there Diane. Sounds like they're finally taking you seriously - about damned time!!
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ttfulmer
Full Member
Posts: 177
Surgery Type: DS
Surgery Date: December 2013
Surgeon: Dr. K
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Post by ttfulmer on Apr 15, 2014 7:15:45 GMT -5
Diane, I am praying for you. My heart goes out to what you are going through. This has been a difficult road, but know, you are not alone. Soon you will be back to full strength, this is my pray. Hang in!
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Post by bagaof4 on Apr 15, 2014 7:41:57 GMT -5
So sorry to read of your continued struggles, Diane. Hoping they finally get a true diagnosis and start treating the issue so you can feel better at last! Sending you positive energy! (((HUGS))))
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Post by deedee484 on Apr 15, 2014 8:20:40 GMT -5
Thank you guys for the well-wishes! I got some results back. The CT scan looked good for the stomach and pelvic parts. The chest part showed the pneumonia so I have been on lots do antibiotics and breathing treatments 4 times a day.
I had both scopes yesterday. The GI Dr told my mom that the results were both very good....nothing unusual (except post surgical changes) no polyps, no bleeding or lesions at all. So it all looked good.
Pneumonia is better so I get to go home. No fever yesterday or today!
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Post by Girlrocker on Apr 15, 2014 8:37:58 GMT -5
Diane, I'm glad to hear you are feeling better and that your tests are coming up showing good things; but they still have NO idea what the source of these fevers are?! What are the next steps, have they said? I just so want you to be able to put this behind you once and for all!
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Post by newyorkbitch on Apr 15, 2014 8:40:35 GMT -5
What about the bloodwork the ID doc had wanted?
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Post by teachermomolp on Apr 15, 2014 12:29:47 GMT -5
Oh Diane- I hope you feel better!
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Post by deedee484 on Apr 15, 2014 13:18:21 GMT -5
Sharyl....Still no answers about the low grade fevers. The high fevers last week are attributed to the pneumonia! I'm tired of it all! NYB...I see the ID Dr tomorrow so I will know something then. Teachermom....Thanks!
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Post by newyorkbitch on Apr 15, 2014 14:18:05 GMT -5
Get copies of all labs done in the last week and bring them to the ID doc
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Post by Joanne on Apr 17, 2014 8:30:07 GMT -5
Hi DeeDee
I'm sorry you're still struggling with this. I've been following your fever story and know how frustrating it can be. I know a bit about what's called FUO - of Fever of Unknown Origin. My son had a fever that went undiagnosed for 5 months, and we did the same cycle of ID doctors, hematology, scans, etc.
There are basically 4 things that can cause a prolonged, undiagnosed fever:
-Infection (viral, bacterial, fungal) -Cancer (most likely lymphoma or leukemia) -Connective tissue disorder (ie Lupus or another rheumatology problem). -Undiagnosed, meaning you never find the reason and it just goes away.
Since yours came about the same time as your DS recovery, I understand why they keep looking for infection. The fact that you have pneumonia is probably a clue to that.
What I would encourage you to look into is your bloodwork. I know you said your ferritn is very high, which could mean inflammation. How is your CBC? A high white count could point towards infection. The high ferritin could also lean towards a connective tissue / rheumatology problem.
In my son's case, he actually did have a very rare lymphoma that was difficult to diagnosis. I don't say that to scare you, since it would be very unlikely that you would have a problem like that appear at the same time as your DS. I only share it with you because I wanted to let you know what we learned along the way, and how he was ultimately diagnosed.
Back when they were still looking for an infection, the doctors decided to do a lymph node biopsy. His lymph nodes weren't enlarged as with typical lymphoma. It was actually the ID doctor who suggested it - but the reason was he said the lymph nodes are a key part of the immune system. He was looking for infectious clues to see what types of cells the lymph nodes were producing. He said that seeing what is going on with the lymph system could lend clues to the type of infection.
I think that's worth asking your ID doctor about. Also if you don't have a rheumatologist on your team, I'd look there too.
I hope you get to the bottom of this. What we also learned is that FUO in the 4th category - truly no diagnosis ever found - goes away eventually and has the best prognosis. I know how frustrating it can be. We only got to the bottom of my son's fever once he was hospitalized and worked up by 11 different specialties. One of the doctors said the most comforting thing to me about the frustration: This wont go on forever. We will either find the diagnosis and treat it, or it will resolve.
Hope that helps Joanne
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Post by Girlrocker on Apr 17, 2014 10:15:07 GMT -5
{{{{Joanne}}}}
Thank you for this invaluable information, for Diane and everyone else here. Lisa/Prettygirlbounce has been having her own infection issues and I'm going to make sure she see this.
To all our wonderful newbies, and the discussion we've been having about the time we spend on a board, why many of us stay well beyond our early surgery time-, this is exactly why. Both surgery experiences, I so valued the stories, knowledge of long-time veterans who keep their hand in, helped so much to hear their experience, their stories, ideas for medical help, diet, and a picture of how things were later on, so I knew what I was working toward.
HANG in there Diane, you've got a whole bunch of love here rooting for you!
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Post by deedee484 on Apr 17, 2014 14:54:50 GMT -5
Joanne....thank you so much for the wealth of information you provided to me. Sounds like you totally understand what I am going through. I've been looking at my bloodwork and basically these are the highlights:
CRP..............very elevated SedRate........very elevated RBC, Hgb, and HCT.......all low (but much better since I had the blood transfusions!) WBC...............normal RDW................high Lymph%...........low
I have also seen a Rheumatologist and so far only one test showed possible Rheumatoid Arthritis. But other tests were negative for RA. Also my Ferritin level has been LOW not high.
Also ever since they have had me on strong antibiotics for the pneumonia.....the fevers are nearly gone. So we will see what happens after I finish the Levaquin I am on now. I will also ask me ID Dr about my lymph nodes when I see him in two weeks.
Thank you so much for all your help! I still feel this is related to my DS surgery (and even have my own idea of what may be going on) so I will be talking to Dr K. Praying for your son and his healing!
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Post by goodkel on Apr 19, 2014 20:57:37 GMT -5
I still feel this is related to my DS surgery (and even have my own idea of what may be going on) so I will be talking to Dr K. What is your idea about what is going on and why do you think that it has to do with your DS?
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Post by deedee484 on Apr 21, 2014 12:48:37 GMT -5
Kel....I truly feel that my stomach is not emptying correctly. The food/meds sit in there un digested and makes me very nauseated. The food is rotting in my stomach and my body is trying to fight the bad bacteria that is in my stomach. Hence the low grade temps, severe nausea, mild stomach pain and 3-5 days at a time with no bowel movements! It's just my theory but it's the best explanation I can come up with. Does that make sense or seem possible?? I know when my GI Dr did a scope (while I was in the hospital) the meds I had taken 16 hours earlier were not digested at all! (I could actually see the imprints on the pills!) that does not seem right at all!!
I rec'd a letter from my GI Dr with the findings of the stomach and small intestines. This is what it said.....
"biopsies of stomach showed BENIGN INFLAMMATION called GASTRITIS. There was no infection with Helicobacter pylori bacteria. The biopsies of your small intestine were normal. Your celiac antibody test was negative. You should continue your iron infusions for iron deficiency anemia and be seen back in our office in May as scheduled."
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Post by goodkel on Apr 24, 2014 4:10:22 GMT -5
Kel....I truly feel that my stomach is not emptying correctly. The food/meds sit in there un digested and makes me very nauseated. The food is rotting in my stomach and my body is trying to fight the bad bacteria that is in my stomach. Hence the low grade temps, severe nausea, mild stomach pain and 3-5 days at a time with no bowel movements! It's just my theory but it's the best explanation I can come up with. Does that make sense or seem possible?? I know when my GI Dr did a scope (while I was in the hospital) the meds I had taken 16 hours earlier were not digested at all! (I could actually see the imprints on the pills!) that does not seem right at all!! I rec'd a letter from my GI Dr with the findings of the stomach and small intestines. This is what it said..... "biopsies of stomach showed BENIGN INFLAMMATION called GASTRITIS. There was no infection with Helicobacter pylori bacteria. The biopsies of your small intestine were normal. Your celiac antibody test was negative. You should continue your iron infusions for iron deficiency anemia and be seen back in our office in May as scheduled." Have you had a CT scan with contrast? Have they checked that your pyloric valve is functioning efficiently? What did the doctor say about those meds still sitting there undigested? I have read of gastritis, but I never had an understanding of what it meant. From WebMD: Gastritis is an inflammation, irritation, or erosion of the lining of the stomach. It can occur suddenly (acute) or gradually (chronic). What Causes Gastritis? Gastritis can be caused by irritation due to excessive alcohol use, chronic vomiting, stress, or the use of certain medications such as aspirin or other anti-inflammatory drugs. It may also be caused by any of the following: Helicobacter pylori (H. pylori): A bacteria that lives in the mucous lining of the stomach. Without treatment the infection can lead to ulcers, and in some people, stomach cancer. Pernicious anemia: A form of anemia that occurs when the stomach lacks a naturally occurring substance needed to properly absorb and digest vitamin B12. Bile reflux: A backflow of bile into the stomach from the bile tract (that connects to the liver and gallbladder). Infections caused by bacteria and viruses. If gastritis is left untreated, it can lead to a severe loss in blood and may increase the risk of developing stomach cancer. www.webmd.com/digestive-disorders/digestive-diseases-gastritisWhen your doctor gave you this diagnosis, did he divulge what caused it? The blood loss certainly explains your anemia. But, what are their plans for eradicating the cause of the gastritis? You can't let them drop the ball here. Meds sitting in your stomach too long can definitely cause irritation and inflammation. Someone needs to figure out why you are processing your intake so slowly. WHAT exactly is causing the gastritis so it can be fixed. THIS is NOT satisfactory: Your problem is being pushed aside again. " WHAT is causing this?" is the question everyone needs to be focused on and not put down your file or schedule you for an appointment a month away until it has been answered. If this doesn't happen ASAP, you really need to get yourself to Cleveland. The doctors you are seeing now are doing NOTHING to fix this. They are only dealing with the symptoms.
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Post by newyorkbitch on Apr 24, 2014 7:34:26 GMT -5
Read this Diane, it's information about gastritis. www.webmd.com/digestive-disorders/digestive-diseases-gastritisThe time for being a passive patient is gone. You must demand answers and treatment and you must be aggressive about it. Anemia can cause gastritis….possibly that's what your doctor is thinking, hence the recommendation for continued infusions and to be seen next month. That would be a reasonable course of action BUT you MUST know that these are the reasons for this recommendation. Also taking a PPI can help - but I strongly recommend that you take 20mg am and 20mg pm to keep the levels even in each 24 hour period.
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Post by Girlrocker on Apr 24, 2014 9:09:55 GMT -5
Diane, what they said - you have to REALLY take charge, demand appointments, diagnosis, plan of action and a dedication to this, not pushed down on their 'it can wait' list. They are barely responsive to your issues, let alone proactive. You should print out this entire thread to take with you when you see them next - which is when? And if it's not now, then you need to see someone else, this is not acceptable 'treatment' at all. I know you are bone weary and exhausted from dealing with all of this, that it's become the center of everything, you feel beaten up; that's what we're here for, to vent, keep you propped up so you can keep going.
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