In The Beginning….

Hello family, friends, and coworkers. I am going to use this blog as an attempt to keep everyone updated on my health status in one spot.

As of today I have officially been diagnosed with  myelodysplastic syndromes (MDS, formerly known as “preleukemia”).  There are a lot of different types and later on I might follow-up with more specifics. For now, the treatment is outpatient chemotherapy and getting my three brothers  “typed” to see if they are candidates for stem cell transplant. The therapy is 5 days of chemo, followed by 3 weeks off chemo, over the course of several months. After that, a stem cell transplant could occur which is the ultimate cure.

How did it come to this? Well, I don’t know. You can read the description of disease and it pretty much is a random thing.  But I can tell you how it was discovered…

After our last softball game on July 1, 2010, I got what I thought was a pulled muscle in my chest. After several days of not getting better, and since I also had some strange heart palpitations (which I have had in past) when I would go up several flights of stairs, I thought it best to see doctor.  To his surprise, after an X-Ray he found the “pulled muscle” was really pneumonia or some pneumonia like infection (interestingly, I was not having any pneumonia symptoms). At that point he prescribed a 10 day antibiotic treatment and also took some blood tests.

The pneumonia cleared up but I was still having heart palpitations. The blood tests came back with all my blood counts low…red, white, platelets….anemia. That explained the heart palpitations as my heart was compensating for low oxygen levels in blood. I do not have any heart problems. But anemia is a symptom of something else, not a disease on its own.

More tests confirmed anemia was not diet related. Doctor then assigned me to a St Marys Hematologist, who performed a Bone Marrow Biopsy – BMB  (if you look BMB on internet, the test is not nearly as bad as some sites make it out to be. It was actually painless). The result of that test was somewhat inconclusive….the sample was not the best and the numbers were borderline. Then I was sent to the “Ivory Tower” specialists as Barnes Siteman Center.  Another Bone Marrow Biopsy, lots of blood draws, and the final diagnosis is what we have today.

For the most part, I am fine now. I can go out to store, drive, etc. I can’t do very strenuous things more because I can’t risk injuring myself while my blood counts are low. I could end up with uncontrolled bleeding or infections. My main problem right now is neck and back muscle stiffness, probably from being on computer too much 😉

So with that, I better stop for now. Look for more updates soon. Thanks for all the notes and emails of concern, I really appreciate it 🙂

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21 responses

  1. You have handled everything with courage, grace and humor these last several weeks. Stay strong, stay positive. (I’m in this with you Jimmy)

  2. Hey Jim
    You still have the humor going in your blog !! Good luck for the coming weeks, and hoping to see you at work soon, !

  3. Jim,
    We just heard the news at work. I hope everything goes well and that your back to work soon. I know you are missed around here. Stay strong on you road to recovery.

    Best Wishes,

    Jeff Smith

  4. We’re all thinking about you!!! Stay positive!

  5. So sorry to hear about this, Jim. But you’ve got the strength and determination to beat this thing. We’re all pulling for you. I’m sending positive thoughts your way.

  6. You are in our prayers. Let me know if you need anything.

  7. Sorry to hear the news, but sounds like you are on board with treatment and staying positive. I have a freind with a similar condition and she is preparing for bone marrow transplant. Like she says, get the plan, work the plan, get well! I’ll be keeping you in my prayers for a full recovery.

  8. Thanks for the update Jim… It hasn’t been the same here without you. We’re all thinking of you and wish you a speedy recovery! Now, how ’bout them Cards?! ;^)

  9. Jim, stay strong! We are praying for God to lay His hands on you and heal your body for a full recovery.

  10. Jim you better get well or who will visit me in the nursing home.
    I know you will bet this.
    You will be in my prayers. God Bless.

  11. I will be praying and thinking of you through your road to recovery. I know you can do it because you are just that kinda guy. Now, YOU GOTTA LOVE THEM CARDS!!!!
    Take care and get better soon.

  12. Hi Jim
    Glad you found out what the malady is so you can be treated. Your in my prayers for a complete recovery and ASAP. If you need any chicken soup please let me know and you will have it. My brother has Thrombocytopenia (purpura). He makes imperfect platelets and is doing very well now that they removed his spleen. Health problems are being fixed at Barnes everyday. Hang in there, and if there is anything I can do for you please call me at 636 282 0235. I will clean house, wash windows, shop for groceries, pick up movies, etc. Take you pick. God Bless your recovery.

  13. We sure miss you around here. Stay strong. Let me know if you need anything.

  14. Sorry Jim, I left off the #1.

  15. ditto… from Karen #2

  16. Hi Jim,

    Hang in there…we really do miss you around the office! I’m sending good wishes your way and prayers too!

    Take Care!

  17. Hi Jim,

    Hang in there…we really do miss you around the office! I’m sending good wishes your way and prayers too!

    Take Care!

  18. Brigitte Hografe

    Hi Jim,

    I don’t get on my computer very often so I just found out about your illness today. Hope all is going well and that you have a good doctor to help you get through this.
    I have missed seeing you and working with you this last year and a half that I’ve been on disability.

    Stay strong and I’m praying for your recovery.

    Brigitte

    1. Thanks, I hope you are doing well. It’s been kinda overwhelming these first two weeks. My first round of treatment ends Sunday then it’s 3 weeks off to see how things shape out….Jim

  19. Jim, may God be with you in your time of recovery. You’re missing all the fun of conversion. 🙂 stay positive.

  20. Jim, great news about your brother being a match! I couldn’t be happier for you. I’m so glad you’ve been feeling decent too, I hope that continues. Keep up the positive attitude and let us know if you need anything.

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