3rd opinion

I went to Davis for my 3rd opinion and he wants more data. Then wants to see me in about a month again. For some reason, my glands are NOT nearly as big as they were in June. (can stress make then HUGE? Because they were really big in June and that's really the only difference between June & July) Basically before he even thinks of treating he wants to redo ALL the tests since day 1! So I had a ton of blood work done, he even redid the Genetic testing and is checking to make sure I was diagnosed correctly! Then he wants my sleep study redone (talk about a nightmare- my sleep dr. is MIA, so I asked my regular dr. if she could just refer me to do the sleep study since time is of the essence & I don't need a diagnosis, I just need the sleep study done to confirm the machine is still at the correct settings! So she referred me to a NEW sleep Dr. whose nurse couldn't comprehend all I need is the study!). Anyway, I am pleased he wants to get to the bottom of everything but am greatly concerned because I have to go back to work in less than a month or not go back. I don't know how to survive another year of the extreme stress, being sick all the time, feeling like I am going to fall asleep all the time etc. I know even the neurologist is concerned because literally daily I would feel awful, headaches/sore throats/stomach aches then come up and sleep for 3-4 hours....Teaching was my life but I need to decide in the next 3 weeks what to do. Are there any other teachers out there who just kept getting sick all the time? If so, how did you handle it? My students last year were great and so was my custodian clean was our motto.

Anyway, thank you for all the advice. I'll be curious to see what the test results say.

11 Replies

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  • Thanks for the update, so frustrating for you that this is all taking so long to get sorted. The stress of it all is not helping at all. Wish I had advice to offer, sure someone in our community will be recognise your dilemma.

    I hope the test results show you the way forward.

    Best wishes

    Bub

  • Let me first state that I am not a doctor and cannot give medical advice, but I do read from your posting that the doctors are running a full set of tests, and this can only be a good thing.

    I watch the various CLL forums and one of the world’s experts on CLL is doctor Susan Leclair and she recently provided this information on another forum and it might be relevant to your situation.

    Subject: Re: white count variation

    Yes, white counts will jump a round quite a bit.

    A simple cold can cause the lymphocytes to go wild reaching sometimes 4x their initial count and

    then taking several months to slowly wander down again.

    Insomnia, stress, change in diet, rapid fluctuations in environmental conditions, etc all can cause a variation in lymphocytes so you also have to take into consideration any allergies, bruising/trauma, infections, drug reactions, etc.

    >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

    So as you can see some wide swings in ALC blood counts are very common, even due to a simple cold.

    ALSO doctor Leclair advises that stress can be a significant factor in producing a high lymphocyte count.

    From my personal experience children are nothing but a ‘ germ factory ‘ and thus I do try and avoid family children’s parties or large children gatherings. I also advise any family member NOT to bring any grandchildren for a visit if they are ‘sniffling or coughing’.

    Yes sometimes this is tough; I don’t change my whole way of life, but I do exercise a certain level of caution, due to my CLL. IF your work involves a lot of stress and being with children it does seem that you incur some risks.

    Dick

  • I had major ftigue and went to my union for help and got nothing. Just a lawyers letter gently threatening an ada suit however can get your district and principal to back down. I also had fresh pencils for every kid, kleenex, hand sanitizer, and taught the kids fist bumps instead of other forms of approval. Never touch a bannister! After those things, pretty clear sailing for me. Also find out about intermittent fmla if hr wont change policy re: donating sick days. Re: pain of a principal. Remember that principal should be a psychiatric diagnosis.

  • My class was REALLY good about being clean. I mean as in obsessive last year. They would even clean the blinds for me...They were really great about it. If I would let them they'd have cleaned my desk from "clutter" daily but I rarely went over to my desk, usually it was just stuff I never looked at...I had individual packs of tissues, the kids had individual supplies etc. trust me I took EVERY precaution I could :)

    I DO NOT have the support of HR/principal I'm fighting on other issues so this is just "one more issue" I have a foot issue and gave them a Drs. note 3 years ago stating I could not do yard duty for more than 15 min.; no one told me I had to have the Dr. fill out special paper work until AFTER my evaluation where I was written up!

    I'm not sure I understand about intermittent fmla or the comment re: principal and psychiatric diagnosis....I understand fmla but wouldn't that be harder to come and go? How would the pay work....I have an apt. with STRS tomorrow so hopefully so of my questions will be answered tomorrow....

    As for the Sleep Apnea, I do check my API, the highest it's been recently is 2.9. The hematologist is the one who wants a new Sleep Study to make sure the machine is still on the correct settings since I haven't had a sleep study in 4 years (more?)

    Any more suggestions are MORE than welcome, I take everyone's suggestions :)

    Thanks!

  • The principal comment was a joke.

    Clean is good, but not touching students or their germ-laden objects are better. Make sure you have your own dedicated pens, pencils etc, and they have theirs.

    Check out this website dol.gov/whd/regs/compliance... and go to Intermittent/Reduced Schedule Leave to see about this kind of leave. When I had chemo, this is what I used. In my case, it also continued my health insurance.

    Good luck. It is hard to deal with institutions like schools. Do you have a union rep? My union did nothing for me, but maybe yours will be better.

  • You mention going to Davis for a third opinion. I assume you mean Cal Davis. Have you seen Dr. Coutre at Stanford? Did your tests include your Ig levels - IgA, IgG, and IgM?

    I was diagnosed in 2003 and taught third graders until I retired in 2007. Going into my diagnosis I was sick all of the time. When diagnosed my doctor started me on IVIG to boost my IgG level which was very low. For me it was a miracle treatment. Even with students in my class who's parents thought of us as babysitters for their sick kids and a principal who backed down if she thought a parent would complain and sent sick kids back to class, I had almost no infections during that time period and not a single case of the flu. I did get flu shots and the pneumonia vaccines, as well as whooping cough, as there was an outbreak of it here. They are all safe for CLLers.

    Do check into your district's FMLA guidelines. Knowing my rights saved me with that principal. don't assume, no matter how nice your administration is, that you won't need to file. If your contract is anything like the contract for LAUSD you probably want to at least start the school year and then take sick days as needed, or even a leave if you have to. I was on leave for my first round of treatments as I was quite ill by the time I was diagnosed. My friends donated sick days to cover the time I was out, which was wonderful, as I managed to get a full year of retirement as a result.

    I hope this helps.

    Pat

  • Yes, I saw Dr. Coutre at Stanford. Other people have mentioned other things to boost immunity but no Dr. has suggested that. I think only a couple times out of the ??? times I have done blood work has my IgG level been tested and at the time it was okay. The Dr. at UC Davis did test it (I don't know any results yet from Davis).

    No, my principal is a jerk. I do know all my rights, in fact after last year a few people have actually suggested I file an ADA claim because they think she was harassing me/torturing me (my word) due to my illness but there is no way to prove it. Unfortunately, in my district there is no way to donate sick days, otherwise I would be in a much better position than I am. I went to school sick often this past year so I could save some days. My regular dr. is great about making sure I get the regular vaccines/shots because I have had no spleen. I have everything they suggest. I'll have to talk to the Dr. and see if there is anything he can do about helping me stay healthier- thanks!

  • Great to hear that the tests are being done again and that the whole situation is being looked at!

    With regards to the job-only you can make such a life changing decision based upon all the facts. It appears from your posts that you are under tremendous stress about things so try and think clearly about your future career. I always find it useful to sit down calmly and make a list or a fish diagram which shows the positive and negative points of the situation. Once I have done this I can try and make an informed decision of what I should do without the emotion of the situation getting in the way.

    I know it's easy to say but now you are awaiting the third opinion in respect of the cll you must try and take back control of your life. Don't let the cll and other ailments take over I am sure you are strong so wish you all the very best for the future!!

  • Just a thought concerning the sleep study. If I read your post correctly, you have been diagnosed with sleep apnea and are using a Cpap machine. If so then you should be able to tell if your setting is correct by checking your AHI number on your machine every morning. The target number is 5 and under. You can adjust the pressure up or down to achieve that number. This might help you until you can see a new sleep doc. When I needed an adjustment I did not have to have a new sleep study, the doctor just changed the pressure.

  • You say you went to Davis. Where is this Davis? UCDavis?

  • Sorry- yes I sometimes don't think before posting things like that. Yes, UC Davis in California.

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