35 and MDS

[Smarti54]

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!

[amyangel]

Hi Smarti54,
We are kind of new to this group too , and I am also enjoying the wonderful HOPE stories I have heard so far !!
Our prayers are with you too .

My daughter was septic too from her gallbladder
Just wanted you to know I am very thankful for the anesthesiologist we will be needing that this coming week as my daughter undergoes a full body CT and a Muga scan in preparation to her SCT .

[kyis]

Great story Smarti,
The positive attitude makes the difference I think,
What's next for you?
I'm surprised you had some of those problems with pretty good wbc.

[maggiemag]

Smarti, I see that this post is from September, but if you are still checking the forum now and then, I have a comment. You might have your physician draw some immunoglobulin levels, like the IGG3 subclasses to see if that's why you are getting frequent infections. Maybe you have a hypogammaglobulinemia.

[Cheryl C]

Agree with maggiemag. It's worth checking that out. Since being diagnosed with hypogammaglobulinaemia and going on 4-weekly IgG I have had far fewer infections.

[Smarti54]

I have not had this checked. I do have a follow up with my hematologist coming up in a few weeks. There was a question as to whether I was more susceptible simply because of working in a hospital. I will ask at my next check up. All else is doing well. Thanks for positive support.

[Smarti54]

I have elevated IgG level and am
Showing antibodies to mono aka Epstein Barr. My Dr. ordered a "fatigue" panel to see why I am so tired and achy with normal hemoglobin and hematocrit. My liver levels are elevated more than six months ago but still normal and my CT shows fatty deposits on my liver. It's like a puzzle and we keep finding peices. I don't know what all of it means yet but pray for more answers.

[Birgitta-A]

Hi Sunny!
Too bad that you are so tired.

I wonder how you could be so short of breath that you couldn't do anything and have a HR of 150 when you moved as you wrote in your first post. Is is something wrong with your heart that makes you so tired?
Kind regards
Birgitta-A

[Smarti54]

I always read these threads even though I do not respond. I am thankful for each of you sharing your story. I have been home from work since pretty much August of last year (anesthesia) just because of shortness of breath and passing out with a slew of other ailments. I know who doesn't want their nurse anesthetist passing out during a procedure? 😁 I have officially been diagnosed with postural orthostatic tachycardia syndrome. (Also called orthostic intolerance or autonomic dysfunction) Basically I stand up and my heart rate jump to 130-210. I was told for years I was "high strung" and "anxious" and I was blaming it all on anemia and sepsis last year. I am wondering do any you have any other strange or rare diseases that coincide with your MDS? I truly believe that God will not give me more than I can handle.

[maggiemag]

Hi Sunny! I am sorry you have to deal with these challenges. For me, I have a slew of other medical issues, some rare,some still undiagnosed even after 8 years; some quite serious (lung cancer x 2 for example). But I am still doing well enough to go to NYC for a 5 day holiday! My heme/onc says I'm the healthiest train wreck she cares for. What works for me is to not focus on any illnesses/side effects/ blah, blah, blah. I do not want to become my disease; I try to act as if I have nothing wrong with me, and live each day very grateful to still be hanging around. Carpe diem baby! Sometimes it's easier than other times, but I just focus on the positives and leave the rest for God.
Mags

[Cheryl C]

I agree with you Maggie. While ever I feel well I behave like a normal human being and don't restrict myself from doing anything. I'm going to Papua New Guinea 4-29 June to do a volunteer stint with my husband. I volunteer at a local school a couple of times a week helping kids who are struggling with reading. I find these types of activities keep my mind off the prognosis. If an individual doesn't feel well, then that's a different matter I guess.

[Smarti54]

Thank you for your encouraging words!!! I plan on living life as well as I can. I know that knowledge is power and I will fully educate myself and be prepared for whatever this process may through my way. I do all I can with what energy I have and know those that matter most know I will do all I can. Thanks again for listening!!!