Thread: 35 and MDS
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Old Sat Sep 6, 2014, 05:59 PM
Smarti54 Smarti54 is offline
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Join Date: Aug 2014
Location: Hattiesburg
Posts: 16
35 and MDS

Hello all, I have been following this forum for a few months and have drawn great strength from reading your stories. In November of 2013 I passed out while driving.... One of three episodes of losing time within a few weeks. I am a nurse anesthetist and this was the final straw that led me to realize this was an issue. I could not risk having a patient under anesthesia and have this happen. Luckily I was not hurt but was run through a battery of test all of which were neurologically and cardiac centered. During this time I was advised to take a medical leave. My heart showed some fast rhythyms that were short lived and my brain scan was abnormal.... Well the cervical spine portion. They called me and asked me to get and MRI with and without contrast of my cervical spine. I assumed I had cervical stenosis and that was why I had some tingling in a few fingers every now and again. After the MRI I got a copy and took it to a Radiologist I knew to glance at it. I was told I needed to see a hematologist/oncologist. I either had mutilple myeloma, lymphoma, leukemia, or some hematological issue. When I called the neurologist I was informed he would be out of town and address the issue in two weeks.... This was Christmas break. This was not good enough for me. I needed answers I had to get back to work..... Surgery doesn't just stop. I had a friend order the appropriate tests that ruled out multiple myeloma and lymphoma and had an appointment set up with hem/onc..... Two months later... Again this wouldn't work. I wasn't allowed to work until cleared. I called in another favor and had an apt in a week, and a BMB the next week..... Low risk MDS. No chromosomal abnormalities, just myeloid dymaturation, non specific myeloid dyaplasia and non specific erythroid changes. At first I was terrified. In my training I had never heard of this. Upon reading all I saw was AML.....depression set in. I went back to work and told no one but family. Within a week or so I realized it wasn't all that bad. CBC WBC normal H and H 12/36 plts 115. A month later I got a GI bug for two weeks plts dropped to 82...H and H 10/30 but still ok. Then July 4.. Acute pyelonephritis. CBC WBC 3.1 H and H 8/23 plts 56 temp 104.2. One week of IV antibiotics. Upon discharge I was so short of breath I couldn't do anything. My HR was up to 150 when I moved. Worked for a month then developed a GI Bleed with colitis. That was Aug 6th. I have been home since learning to decrease stress, eat right, meditate and see a shrink. Stress is a must in my job.... I have someone's life in my hands. I have used this forum as a wonderful insight that life can go on. I have two children 17,14 and a husband that is also a nurse anesthetist. I will stay home another month and then.... I will continue on doing what I love.... Putting patients to sleep and doing pain procedures. Thank you all for posting and sharing and keeping on keeping on. Watch and wait for me!
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Sunny age 36 diagnosed Jan 2014 with low grade MDS. Recurrent infections: GI, pyelonephritis and sepsis, then lower GI bleed. PoT syndrome January 2015. WBC 4, RBC 2.6, Hgb 9 Hct 27 platelets 62 MCV 107. Watch and wait. 11/15 BMB showed del(13)(q12-q14)

Last edited by Smarti54 : Sat Sep 6, 2014 at 07:01 PM.
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