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first night in the hospital

July 3, 2012

I checked in yesterday afternoon to my private room on the 6th floor at COH.  It’s good size with a chair that turns into a bed, TV, DVD, internet, and a large private bathroom.  I have a view facing east to the 605 freeway and a huge gravel pit.  Through the haze and smog I also see a couple large energy transmission towers hovering over semi desert chaparral.   Not quite the Post Ranch in Big Sur but I’m not on vacation.  For what the scenery lacks, the care and staff make up for it in spades.

My doctor, Dr O’donnell (we call her Dr. O), is gone for a week and her replacement is a reserved South African doctor named Dr. Stein.  Nice fellow.  I’m very impressed with the nursing care.  Their level of knowledge gives me a good secure feeling and they are so helpful and kind.  I’m seeing the occupational, physical, and recreational therapist, and the dietician today.  Last night I had Asian stir fry that was very good.  All food is low bacteria and needs to be eaten within an hour from the time it is prepared.

They started Melphalan last night and due to the high IV fluid rate to keep me hydrated, I urinated about a dozen times.   Not the most restful night.  But even without that, they’re coming into the room at least every 4 hours to do something.  My WBC is 1.6 today and dropping and soon, probably 2 days, I won’t be able to leave my room.  That’ll last about 2 plus weeks till the donor’s cells kick in and start making WBCs.  So, I’m walking the halls with a mask as much as possible.  Tonight I am going to a Harp concert on the 1st floor.  Today we add Tacrolimus and Serolimus to help prevent donor rejection.  The future promises fatigue, nausea and vomiting, diarrhea, poor appetite, possible stomatitis and infections, and probably Hyper Alimentation for calories and nutrition.  It’ll be rough sailing for a while but hopefully I’ll look back at it as a bad dream.  Routinely, I’m taking Bactrim for Pneumocytis prophylaxis, Actigal for Venous occlusive disease which is new to me, and variety of other routine meds.

Last night, Claire and I went to the 6th floor lobby to hang out and met two other patients.  We spent the next hour learning to make jumping origami frogs from one of the patients.   It was fun.  All of us walk around with IV polls with multiple drips and the vast majority have no or very little hair.  I may be joining that group but my hair should grow back.

Claire spent the night in my room.  She had to wear gloves and a mask.  They have a chair that turns into a bed.  I appreciate her being here but no one can do this 24/7  without going bonkers.  We talk on occasion but it’s just nice to have her here.

Jim

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8 Comments
  1. Julie Dresner permalink

    Hey Jim.. ah yes this all brings back memories. My treatment was the same. I’m so glad to hear that you are taking advantage of their fine staff of therapists, walking the halls as much as possible and of course the nursing staff is superb and great to talk to.
    I must stay that even though the low- bact diet is very restrictive- it was better than when I was wasn’t on it. Their soups are very good. I did get hooked on cup-o-noodle- reminded me of college days and it went down so easily and filled me up. more sodium than I usually eat, but it was tasty.
    Another suggestion.. we brought a folding tray table for Paul to put his computer on and any books etc he had. Maybe Bob & Sarah have one.
    I’m coming in on Thurs afternoon for my check-up. I’ll check with Sarah if it’s OK for a very short visit. If not, I totally get it. Melphelan is a weird one, but the effects go away quite quickly.
    You’re off to a great start – let it continue.
    All best,
    Julie

  2. susan garfield permalink

    Wow. Glad you’re making friends there. Important. Thanks for explaining the low bacteria food. NOW I get it. I’m so glad you”re explaining all this in print because it really gives me a true sense of what you’re going through. The gang played Mah Jong last night but since it was last minute I was wiped out from babysitting the rugrats all day and had one of my famous headaches. We do love getting together and playing. I am so happy that you are down here and not up in Seattle. And it sounds like the staff is fabuloso. xoxo

  3. Randy Danto permalink

    Jimmy, I love all the details. You know lawyers and doctors: don’t want to miss out on anything! I’m sure that Claire is happy to be there with you and enjoying the quiet. I”ll bet she’s even doing some sewing, if it’s legal. Hang in there…each day is a day closer to being done with this! love to you,

  4. Dante brown permalink

    Hi Jim, even without hair, you’d still be the best looking guy on the ward! So no worries there! Joking aside, your blog is fascinating to read and your attitude is so positive that it almost makes me forget what you are really going through. Dinner last week was really fun and I hope you and Claire will call if you need anything. My work schedule is pretty flexible and I am so close to your mom’s I am happy to pick things up & bring them to you if need be, especially now that our daughter has gone off to Brazil. Do you know about audible.com? My dad likes it for listening to books, lectures etc. off his iPod or computer. Many hugs, Dante

  5. Betsy Walsh permalink

    Jim,Tim and I wish you and Claire the best throughout this saga. We continue to pray for you both. Definitely music is a good therapy. Tim is upstairs finishing his morning meditation with an assortment of singing bowls, gongs and the blowing of conch shells! I can imagine what the neighbors must think but today is the 4th of July, after all, so it justifies some noise making. We spent a few days at Tassajara, a very peaceful mini vacation. Dining is family style. We met quite a few interesting people including John Walsh and his wife. John was the former director of the Getty museum. He is a now a part time visiting professor in art history at Yale, his alma mater. He practices Zen. Anyway I hope that once your treatment is over, you can enjoy stays at Tassajara or some other peaceful place.

    If we can do anything to help with your house, let us know. I am now retired so have time on my hands.
    All the best, Tim and Betsy

  6. Clarke Parsons permalink

    Jim, It’s been a long haul, but I am so glad that your treatment has finally started. You will certainly end up a winner. Your many friends and I have certainly appreciated your updates. Please continue to stay in touch as you can.

    Clarke

  7. Lee & Gwynn permalink

    You just never know where your fans will end up. We are in the Czech Republic. We have brought 12 students to Germany through a Rotary Youth Exchnge program. We are the chaprones and they are now with their host families having a great time(it’s been a week and haven’t heard a word so far). We are on our own and traveling to see the sights. Just wanted to let you know that we are thinking about our favorite doc and hoping the best. Thanks for the updates. We are sending you blessings.

    Cheers Lee & Gwynn

  8. Linda Bobbitt permalink

    Hi Jim, Sorry I haven’t been sending posts your way but I didn’t think there would be any from you for awhile. Boy it looks like I missed quite a few days. Well your on your way to coming back to us, we miss you very much. All your information if very fascinating. It sounds like you have a great attitude about everything that you are going through even though it must be very hard on you. You seem to have a postive outlook also which is up lifting to hear. You are our favorite person and of course favorite doctor. All of our prayers and thoughts are coming your way. Can’t wait to see you all healthy. If you need anything at all please let us know. All our love, Dennis and Linda

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