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Day 93

October 8, 2012

Today I am writing to you from my hospital room.  Last night I had a fever spike and as I promised my doctor, I went to the evaluation and treatment center (ETC) at COH.  Essentially, it is 24/7 triage and emergency room but only for COH patients.  They admitted me for pneumonia and fever not responding to outpatient antibiotics.  Its been a rough week.  Every time I breathe it hurts, my energy level is like it was during the first month post transplant.  I sleep 16 hours a day and I feel as weak as a kitten.  But, I know it’ll pass and I’ll get better.  I have no idea what this will do to my discharge plans but for now, one day at a time.

Being immunosuppressed is like playing a well-known game but with new rules and regulations thrown in to the mix.  What I used to be able to tolerate, now I can’t.  This vulnerability will go on for quite some time and I’ll have to get to know the new me and not over do it.  I’m even more paranoid about getting sick than I was.  What a drag but I can’t fight reality.  I’d like to say that I’ve been there, done that, etc… but the truth is that the memory has a short attention span and forgets easily so it needs periodic reminder calls.  It does humble me and reminds me “one day at a time”.

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12 Comments
  1. Ron and Merrilyn Marker permalink

    We think about you every day. You are such a positive person and with every blog we are reminded how very special you are. Hang in there and know that we are sending positive vibes your way.

  2. Julie Dresner permalink

    I am very sorry to hear this. I also had a bout of pneumonia and fever about a year after transplant. I’d never had it before so it was a big surprise . I was also weak and oh so tired.
    It did go away quickly and the only nagging thing was a pain in my left upper back, that eventually went away.. Probably from coughing so much. I hope you also can heal quickly. Even though we are compromised- it’s amazing to think of the body’s tremendous ability to heal..
    ps I have a new email address: julie.dresner@gmail.com

  3. linda permalink

    Take care Jim, I am thinking about you.

  4. alexis permalink

    i’m sorry to hear that you are sick right before your discharge.
    just take it easy one day at a time. you’re almost there!

  5. rose marie cardona permalink

    We were counting the days right along with you. How devastating to have a set-back when release is so close. Day by day patience is the hardest but we are praying for your endurance and a positive frame of mind..this too shall pass.. Our best to you.the Cardona’s

  6. You can’t fight reality but your body will fight back and get strong again. We’re packing and hitting the road soon to come cheer you up. I’m sure you’ll get the best possible treatment at COH. Stay positive, DR,J.

  7. Randy Danto permalink

    Jimmy,I’m sorry for your setback. Maybe it’s more of the two steps forward, one step back process…frustrating and annoying. But I’m hoping it’s temporary and won’t substantially delay your discharge and return to Santa Cruz!

  8. Ann S. permalink

    Hey Doc!

    So sorry for this sidestep. Am glad, however, that you checked in right away and got evaluated.
    The COH community is quite impressive and so very attuned to patients/progress/bumps in the road. Maybe this is the last reminder you needed before release – that you’ll have to keep yourself on a very short leash when you’re farther away from them???

    Sending best thoughts

    Ann

  9. Charlie Young permalink

    Hang in there Jim.

  10. Lorna permalink

    I imagine this must be scary and disappointing for you. I am glad you are getting such good care and I admire your courage in surrendering to, and also working with, what is. I am sending you love and prayers for the healing that is taking place right now.

    Lorna

  11. Ken Andrews permalink

    Jim- we are all pulling for you here in Aptos! Your pt’s have been asking a lot about you- we have been giving them this address to follow your progress. Stay strong. We hope to see you back here soon. Ken

  12. jomobri1231@comcast.net permalink

    Hi, Jim

    Charlie and I just came back from visiting Monica and Brian.

    His last day at work in the Harvard bookstore was Fri we arrived.  He’s decided to come home since he would most likely just end up getting another temporary job for the holidays and didn’t want to overstay his welcome either.  Now, he jokes that his c.v. is going to include “Harvard” and hopes this would impress the future employers.

    Serenity prayer is something I think about more and more as I get older.  You and Claire seem to manage this better than anyone else we know.  You just hang tight, Jim & Claire

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