The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 510. Re: Dean's latest challenges...
    warrior Registered Users
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    Betsy

    I am so very sorry Dean find himself back in the hospital....I wish I could some how fix this for him..... It is truly a drag to celebrate one's birthday in the "joint" In 2010 Kathy celebrated her birthday 5 days after being dxd with AML with all sorts of juice running thru her .....I do not  know your home town, but it seems you should be able to id a good infectious disease doc who will take Dean seriously when he gets these "small" cuts and bruises .... He has demonstrated that he is not great at fighting off infections seems some one close to home should be able to work with you to avoid these trips to Huston ...I wish Dean bon chance .....

    not much to say but hang in there the 2 of you

  • 511. Re: Dean's latest challenges...
    Tex Registered Users
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    warrior wrote:

     

    He has demonstrated that he is not great at fighting off infections seems some one close to home should be able to work with you to avoid these trips to Huston

     

    Oh, no!  Don't get her started on that!  (I made that mistake once.)

  • 512. Re: Dean's latest challenges...
    bwarren25 Registered Users
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    Thank you guys so much for your care & concern for Dean and for just being there to listen. The good news is the infection from the cellulitis in Dean's feet is almost gone. However, the wounds themselves are very slow healing, especially Dean's right foot so they're still pretty painful.  The Infectious Disease doc said the wounds could take several weeks to heal due to being on his feet with callused skin, pressure from standing or walking, and Dean being diabetic.  Today he's been able to stand a little better so I'm really glad to see that. Right now the plan is to continue IV antibiotics and discharge him Sun. on oral antibiotics.  Then Dean has an appointment on Mon. at the Diabetic Wound Care Clinic at LSU Medical Center near where we live.  They'll evaluate him and decide what type of wound care is needed. I don't know much about their Wound Care Clinic but I do know they have a top notch Burn Unit so I would hope they're pretty good at treating wounds.  Dean probably still has a bit of a tough road ahead but I think he's definitely going in the right direction now.  We're also scheduled for a follow up with Dr. Andersson (his clinic transplant doc here at MDA) and Infectious Disease on Mon., June 11. This will be the first time we've seen Dr. A since March and Dean has been in the hospital 3 times since then!!!

     

    Warrior, we live in Shreveport, LA which is about 4 hours from Houston.  We've tried staying in Shreveport and being hospitalized there but most of the docs really don't understand about transplant patients. A few of them do, but you never know if they're the ones on call or not. At least here at MDA there's pretty much a standard protocol for initially treating infections. At home they just aren't aggressive enough in treating infections because as we know, things can get serious quickly with a SCT patient. Dean's pretty far out post transplant  and he's not on immune suppressants anymore but his immune system is considered deficient.  I really wish we could stay at home for all these hospital stays since I have to take vacation or no pay when I'm down here with him. I've even asked Dean again if he would consider staying at home for these type issues, but he just doesn't have confidence in the doctors or their staff at home and that's important.  Tex, I didn't get on my soap box too much, did I?

     

    Well, I guess that's it for now.  Ithanks again for everything.  'll update more again later.....Betsy

  • 513. Re: Dean's latest challenges...
    warrior Registered Users
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    Betsy

    Good news the infection is  under control and it looks like you will get to go home. It is important that Dean feel confident in the people treating him in the hospital so I understand your trips to MD Anderson.... is there an infectious disease doc that you could  hook up with at home that would treat Dean aggressively so he does not need to be hospitalized? It is pretty evident that Dean is NOT your typical patient.....and needs aggressive treatment of infections.  If there is a good burns center there has to be some good infectious disease folks around. Since skin is the organ that protects us from all the little creatures in our environment that can cause infection, burn patients have lots of infection challenges. I spent a year out of college working at the Shriners Burns Hospital in Boston .... it was this experience that convinced me that I wanted to be  a scientist and NOT a MD, and I went to grad school the next year. My experience with Kathy confirmed my decision many years ago....the science of medicine  is interesting it is much more difficult dealing with the human toll that many of these fascinating illnesses represent. When you see the docs in June at MD Anderson you should ask if there is anything new on the horizon that could help  out Dean's immune system. You might ask them why he can not  mount a robust immune response to bacteria. hopefully you will be home soon maybe you could have a belated birthday party for Dean

  • 514. Re: Dean's latest challenges...
    Tex Registered Users
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    bwarren25 wrote:

     

    Tex, I didn't get on my soap box too much, did I?

     

    No, Hon,. you did fine. 

     

    Well, the typical good news with the caveats or so it seems.  I'm glad Dean has made progress.  I knew he would but it's good to hear affirmation I was right.

     

    Ya'll hang in there and keep us posted.

     

    Blessings

  • 515. Re: Dean's latest challenges...
    willowbayfarm Registered Users
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    Hi Betsy,

     

    I don't have much to add to the discussion, I just wish you two could catch a break for more than a couple weeks at a time!!!

     

    Glad to hear things are going the right way again.  Keep us posted, and know you both are in my thoughts and prayers. 

     

    - WBF

  • 516. Re: Dean's latest challenges...
    KyGuy Registered Users
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    I'm glad to hear that the infection is under control.  Good luck getting home.  We're thinking of you.

     

    Take care,

    Kelly

  • 517. Re: Dean's latest challenges...
    mamawarrior Registered Users
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    Good grief Betsy, where the heck did  Dean get these wounds from? Are they diabetic ulcers? Could his AVN of the ankles play any role in this whether it be infection or healing?

     

    Sure hope you all get things under control and straightened out. Has MD Anderson mentioned hyperbarics at all? That might be something worth considering and maybe helpful to some of the other issues he has had.

     

    I cant imagine how discouraging this road must be for you all. I, too, just wish you all could get a break.

     

     

  • 518. Re: Dean's latest challenges...
    bwarren25 Registered Users
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    Diane, the wounds on Dean's feet came from a couple of blisters about the size of a golfball that appeared on both of his heels last week.  We're not sure why he got them because he was wearing the same shoes he has for a year or two with no problems and he wasn't really doing anything out of the ordinary.  With the pain in his ankles & knees from the AVN he really can't do much anyway. The day before he had been working in his closet cleaning things out - nothing strenuous like running or walking a lot. Like I said before, as soon as I saw the blisters on his feet I got a sick feeling in my stomach because I knew we'ld probably be headed for trouble. He soaked both feet in Domeboro astringent, put antibiotic ointment on them, bandaged them and then kept them elevated. When he soaked them, the blisters broke and drained, and on the right foot the outer layer of skinon the blister basically came off.  The outer layer on the other foot stayed intact but was open and draining fluid.  The next day he had a low grade fever, redness and swelling in both feet, with the worst being in the left foot where the outer layer was still intact.  We went to the doctor Fri. and he put Dean on oral antibiotics.  By late Sun. they weren't any better and were actually a little worse so that's when we came to Houston and he's been on IV antibiotics ever since..

     

    Dean has had neuropathy (not really numbness but sharp burning pains like bee stings) in his hands and feet since shortly after his original consolidation treatment 6 years ago and it's controlled well with Lyrica. My guess is the neuropathy may have played a role in not realizing his shoes were rubbing until he had bad blisters.   Now the problem of healing is more than likely complicated by his diabetes.  MDA has gotten the infection under control with IV Vancomycin & cefapime and now they recommend we go to a facility that specializes in wound care.  They have us scheduled to go to the Diabetic Wound Care clinic at the university hospital where we live. If they don't have a hyperbaric chamber I think one of the other hospitals in town does.  I'm anxious to hear what LSU can do for Dean.

     

    The wound on his right foot, where the outer layer of the blister came off, still hasn't healed much at all.  The wound bed is hard, dark skin (not black) with no granulated tissue, and from what I learned from the wound on Dean's arm, the first step in wound healing is granulated tissue. As recommended by the wound care team here at MDA, the nursing staff has been cleaning the wound daily and using Idosorb paste with a special bandage that promotes healing.  Anyway, this is all probably waaaaay more information than you wanted to hear, isn't it?!?!

     

    Thanks again to everyone for your support....Betsy

  • 519. Re: Dean's latest challenges...
    mamawarrior Registered Users
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      Anyway, this is all probably waaaaay more information than you wanted to hear, isn't it?!?!

     

     

    With deans history, i am not so sure you can shorten it but your post really does bring it to life. You may want to consider taking pictures of the wound. Once you go to the wound care center, i am sure they will, but with running back and forth to MD Anderson it would be good for the ID doc (or his partners) as well as transplant to have visuals  of the wound and its progression on hand. 

     

    Do you have an ID doc in houston??

  • 520. Re: Dean's latest challenges...
    warrior Registered Users
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    Betsy

    the suggestion of photos is good one. During Kathy's hospitalizations I took pictures every day ( started as an art project ) and I was able to document all her rashes.  These turned out to be useful when they did a timeline of her fevers, rashes and antibiotics . Some poor med student had the task of creating this. Turns our Kathy reacts to beta lactams (a big and cheap source of antibiotics)... I hope you get home today..

  • 521. Re: Dean's latest challenges...
    bwarren25 Registered Users
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    Well, Dean was discharged from the hospital on Sun. and went to the Wound Care Clinic today. The doc debrided the wound on his right foot using a scalpel to remove the dead tissue, and the good news is there was good healthy granulated tissue underneath. The wound care doc was very encouraged by what he saw and doesn't anticipate Dean having any problems healing from here on out. I was really glad he debrided it because there was no way it could heal until the hard dead tissue was removed. The doc was really great and his nurse was excellent. Dean said the nurse knew more about wound care than all the wound care experts at MDA together (including the doc).  They're great at fighting cancer and infections, but not so great at wound care!  Dean has a follow-up with the wound care doc here locally on Thurs. of next week but I feel really good about where things are headed now. We also go back to Houston to see Dr. Andersson, Dean's transplant doc, for a follow-up appt. on Mon. of next week, as well as Infectious Disease and the plastic surgeon.  As I mentioned, we haven't seen Dr. Andersson since March and Dean has been hospitalized 3 times since then so that should be an interesting visit!!!

     

    I actually took pictures of Dean's heels when the blisters initially came up and have documented their progress, especially his right foot. I learned pictures were beneficial when he had the cellulitis on his arm in April. We also have learned to use a permanent marker to draw lines around the redness/infection to see if it gets better or worse. Sounds simple but can be very helpful.  I was showing a co-worker the wound pics in my "Dean" album of my iPhone photos today and he said "You know, Betsy, most people have pics of their kids or grand kids!". And I was like "Oh, I've got plenty of those too!!!"

     

    I forgot to mention that we saw the Pulmonary doc at MDA the week before Dean's last hospitalization, and the CT of his lungs showed that the small nodules on the last scan had resolved which is good news. Still lots of scar tissue and bronchiactisis and mild pulmonary fibrosis. I also talked to the pulmonary doc about the pulmonary vest but he wasn't very supportive. Said Dean wouldn't get very good results for the amount of effort to use it and felt the hypertonic saline treatment that we currently do would be more productive.  He also suggested Dean try taking oral antibiotics for 5 days rather than going to the hospital when he has the next pulmonary issue with fever. I'm pretty sure Dr. Andersson, Dean's transplant doc, would totally disagree because he's actually fussed at us for doing just that!!!  Dr. Andersson has also told us in the past after hospitalizations for pneumonia that Dean needs at least 14 days of oral antibiotics to do any good.  So I guess you could say the appt. with the pulmonary doc was a waste of time.  I have a feeling the only reason Dean hasn't had pneumonia recently is due to all the antibiotics he's been on lately so I guess that's a silver lining to all these hospital stays!!!

     

    Well, that's it for now. Thank you all so much for your continued love and support.  I'll let y'all know how things go next week.  Hopefully, the wounds on Dean's feet will start the real healing process now.....Betsy

  • 522. Re: Dean's latest challenges...
    Tex Registered Users
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    I don't think it's ever a waste of time to get a different perspective, Betsy.  Dr Andersson might not agree and you'll have to pick which horse you want to ride but it's never a waste of time.  (Please remind me of this the next time I think I've wasted my time at a doc's. )

     

    Your story reminded me of something I'd forgotten.  When I was first admitted they gave me hooked up an IV.  (I'm actually surprised they don't hook up an IV on anyone who comes through the door they're so hot on the idea!)

     

    Anyway, it got infected and I had phlebitis in my left forearm almost my entire seven week stay in the big house.  (BTW, that's something one doesn't want anytime but especially not when one's in the hospital with AML and chemo. )  So my doc winds up drawing a circle around it with her ballpoint.  Not magic marker but it was a small vein.

     

    Thanks for the update.  I'm glad Dean was sprung.  Now tell him to stop being a recidivist.

     

    Blessings

  • 523. Re: Dean's latest challenges...
    KyGuy Registered Users
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    I'm glad he's out of there.  It would be nice if the docs could sing from the same hymnal but with different specialties they're going to have a different perspective.  Dr. A has his full history though.

     

    Take care,

    Kelly

  • 524. Re: Dean's latest challenges...
    warrior Registered Users
    Currently Being Moderated

    Glad things are improving.  I  suggest that Dean wear a sign around his neck when  he visits  consults other than the transplant doc ( I have a sluggish immune system throw away your play book!!) good luck with the  Monday appointment

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