The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 300. Re: Dean's latest challenges...
    Tex Registered Users
    Currently Being Moderated

    Things could be worse, sure.  Thank God they're not.

     

    I've had pneumonia twice in my life.  Once it gets to the point where the band around your chest loosens up, it does feel so good that I feel a lot bettere than I actually am.  Beats the hell out of the other way around.

     

    Keep us posted and try to get yourself some rest while you're off work and Dean's in someone else's care.

     

    Blessings

  • 301. Re: Dean's latest challenges...
    bwarren25 Registered Users
    Currently Being Moderated

    Good news......they're putting a PICC line in Dean's arm today so we can do the IV Caspofungin at home.  If Dean can stay fever free throughout the weekend, Dr. Andersson plans to discharge him on Monday.  Yipee!!!!!!!!  Please pray for a quiet weekend!!!  As always, thank you all so much for your continued love & support......Betsy

  • 302. Re: Dean's latest challenges...
    julindy Registered Users
    Currently Being Moderated

    Betsy, hoping they spring you both. We managed well at home with the IV antibiotics. Praying for you. Love, Judy

  • 303. Re: Dean's latest challenges...
    Tex Registered Users
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    Never thought of having a PICC placed as good news.  But, ya'll are definitely unique in many ways.

     

    Hope ya'll make it home.  Remember to wait until the car's out of the parking lot before you celebrate too much.

     

    Let us know.

     

    Blessings

  • 304. Re: Dean's latest challenges...
    pamd Registered Users
    Currently Being Moderated

    Betsy, you and Dean are both in my thoughts for a quiet weekend, and a swift return home where Dean can recover more peacefully.

     

    Pam

  • 305. Re: Dean's latest challenges...
    KyGuy Registered Users
    Currently Being Moderated

    That's great about the picc.  Does he have a port.  My port was a godsend.  Hope things stay on track for Monday.  Happy Mom's day to you!  I hope your kids behave better than your husband does.

     

    Take care,

    Kelly

  • 306. Re: Dean's latest challenges...
    mamawarrior Registered Users
    Currently Being Moderated

    Happy Mothers Day Betsy. Hoping things are quiet and Dean is feeling better.

  • 307. Re: Dean's latest challenges...
    willowbayfarm Registered Users
    Currently Being Moderated

    Hi Betsy,

     

    I haven't had time to post lately, but have been following along with the latest incarnation of "Dean's wild ride".  I have my fingers crossed that he will be discharged on Monday, and hope you have a pleasant Mother's Day today - you deserve it!

     

    - WBF

  • 308. Re: Dean's latest challenges...
    bwarren25 Registered Users
    Currently Being Moderated

    Hi LLS friends.  I just wanted to let you all know that Dean was finally discharged from the hospital late Mon. afternoon and we got home about 10:30 p.m.  The in-patient transplant team changed on Monday so that complicated things.  Right now Dean is continuing on the IV Caspofungin once a day for an extended period of time.  This past weekend Dr. Andersson said probably 3 months to make sure the fungal pneumonia (Aspergillus) is resolved.  Right now I'm still a bit confused as to when we go back for follow-up and whether it's Dr. Andersson or Infectious Disease, but I hope to get that straightened out this week.  The good news is that Dr. Andersson said Dean's lungs are sounded better since they started the IV Caspofungin, so he feels that the fungus is responding to the IV med.  We're still doing the hypertonic saline breathing treatments at home to help Dean continue to cough up the junk from his lungs.

     

    As for me, by the time we got home Monday I was totally exhausted, both physically & mentally.  Everytime Dean is hospitalized, I can't help but wonder where it will lead, and when Dr. A told us it was fungal my heart sank.  Then the confusion on Monday didn't help things.  I felt like I was pulling teeth and arguing all day long just to get things straightened out and I'm still not sure we're there yet.  Right now all I now is we have orders for the IV Caspofungin for 2 weeks.  Since I've been off work so much lately, I felt like I needed to go in to work yesterday.  Of course I was there in body but not in mind!!!  I did get some sleep last night (better than in the hospital as I'm sure you all know how that is) so I do feel a little better today.  Just have lots of work to do to get caught up.

     

    Hopefully Dean will continue to improve in the next few weeks and he can get rid of the fungus in his lungs once & for all.  Thank you all so much for your continued love & support and thoughts & prayers.....Betsy

  • 309. Re: Dean's latest challenges...
    khenry Registered Users
    Currently Being Moderated

    Hey Betsy, hang in there.  If you need some strength, you can have some of mine.  I don't need it as much as I use to and am willing to share.  I have been thinking of everyone so much lately. I will pray for you and your family daily.

     

    Kristen

  • 310. Re: Dean's latest challenges...
    Tex Registered Users
    Currently Being Moderated

    You know MDA will make sure things go as they should.  Try to limit your worrying to things you can control and things that you don't know the professionals will make sure get done right.  That ought to buy you a couple of hours of sleep.

     

    I hope things improve rapidly.  If not, then that they move straight towards resolution.

     

    Let us know.

     

    Blessings

  • 311. Re: Dean's latest challenges...
    Tex Registered Users
    Currently Being Moderated

    Kristen,

     

    You are an impressive person and a gift to this forum.

  • 312. Re: Dean's latest challenges...
    bradnchris Registered Users
    Currently Being Moderated

    Betsy,

    I do understand your feelings of exhaustion but at the same time watchful anticipation. I think we have both shared a similar experience. Each time some new problem arises or some continued issue is exacerbated, my initial gut reaction is to feel that sense of deep worry and fear. Usually, I have to talk myself into the present moment and remind myself that we face each challenge as it comes. I often wish (much like a small child) that all of this would magically get better and go away to leave us alone forever. Then, I just proceed through the next steps following my instincts and what I know about Brad that no other person can know. As you talk and share your feelings, it touches such a familar place in me. I am thinking strong positive thoughts for you and for Dean. Just remember, you probably know his case better than anyone, even his main doctor. I would bet that his medical record has at least 3 or 4 volumes. The important events and features of his journey are not highlighted in red for the providers, but YOU are the living red highlight for them. Never let them allow you to think that you are not the keeper of the most important information about his journey and his spirit.

    Chris

  • 313. Re: Dean's latest challenges...
    khenry Registered Users
    Currently Being Moderated

    Why thank you Tex...If is wonderful to be appreciated.

     

    Chris,

     

    Well put, for Tom I was the one highlighting information in his journey.  The doctors actually spoke to me instead of him because I understood and could keep a mental record of everything except his medication list.

     

    Like I said Betsy, hang in there and borrow what you need.

     

    Kristen

  • 314. Re: Dean's latest challenges...
    khenry Registered Users
    Currently Being Moderated

    Why thank you Tex...If is wonderful to be appreciated.

     

    Chris,

     

    Well put, for Tom I was the one highlighting information in his journey.  The doctors actually spoke to me instead of him because I understood and could keep a mental record of everything except his medication list.

     

    Like I said Betsy, hang in there and borrow what you need.

     

    Kristen

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