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

     

    I'm sorry he returned so quickly.  My son is in the hospital now with colitis issues.  I hope that's not what's hitting Dean.  My son has had a sigmoidoscopy in the past instead of a colonoscopy so that he doesn't need to be cleaned out.  You may want to suggest that if they start going that route.  You want to avoid the clean out juice if possible.

     

    Hopefully one of the drugs they're using does the trick.  Keeping him in my prayers.

     

    Take care,

    Kelly

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

    I am so sorry that Dean has returned to the hospital. I feel for both of you Dean as the warrior patient and you as the ever present caregiver. You two have been on a long difficult journey. I am thinking of both of you. Kelly thinking  about your son I hope they can help him with the  colitis.....

  • 482. Re: Dean's latest challenges...
    Tex Registered Users
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    I'm sorry to hear about your son, Kelly.  You must've worried the poor lad way too much when he was a child.  The sigmoid is far worse as you're awake for that sucker.  Though, you're right, the clean out juice sucks (but not as bad as it used too).

     

    I wouldn't think Dean would need the juice.  He's been without food for a few days.  I can't imagine what's left to clean out.

     

    Ewww.

  • 483. Re: Dean's latest challenges...
    bwarren25 Registered Users
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    Thanks Tex, Kelly and Warrior for your concern.  The good news is Dean seemed to have turned a corner on Sun. as the pain finally started improving. They put him on a clear liquid diet on Sun. and he tolerated it okay so then they changed him to soft diet yesterday. He's had some diarrhea but only a couple of times a day. That might even be side effect of all the IV antibiotics but they did cultures of the stool just in case. He still has some pain but only when they push in one localized spot.

     

    Dr. Shah, the transplant doc, just came in while I was typing this and she has decided to do another CT of his abdomen today. She said the original CT they did early Friday morning in the ER showed inflammation in his colon but not a clear picture of what was going on.  They were only able to use oral contrast at the time because his creatinine level was too high when he was admitted, and from what I understand, the contrast is hard on the kidneys.  Dr. Shah is concerned that the pain is still there at all, that Dean has been slower to recover than she expected, and that the infection originally began even while Dean was still on oral antibiotics for the cellulitis.  I guess they're gonna hold off on the scope until they see what the CT shows. This weekend the surgeon said they would rather not do the scope unless absolutely necessary because with inflammation in the colon it could possibly perforate during the procedure. I'm really glad they're gonna take another look at his gut because something is obviously still going on. It's better but not responding quite like the docs want.  Dr. Shah said we should know tom. whether or not Dean can be discharged later in the week or if more needs to be done.

     

    Kelly, I remember you mentioning a while back about your son dealing with colitis. Wasn't he in the hospital when you were going through treatment again and your poor wife was having to go back and forth between hospitals? (And I think my job as Dean's cargiver is tough!...Wow!!!)  I hate to hear your son is still having problems and having to deal with that at such a young age. What type of colitis does have?  Any insight you can give me and Dean would be greatly appreciated.

     

    Well, thanks again guys for all the support.  I'll update more later...Betsy

  • 484. Re: Dean's latest challenges...
    Tex Registered Users
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    I trust the docs will navigate between the shoal just fine.  Please keep us updated.  I am glad Dean was feeling better as of your posting.  Hope it's continued.

     

    Blessings

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

    Transplant team just came in. CT showed definite improvement in the inflammation from the previous scan and no sign of an abscess which is good news!  I think Dr. Shah was afraid they had missed something on the previous scan so I'm glad to know that things are really getting better. They're changing all Dean's meds to oral, including oral antibiotics, and plan to discharge him tomorrow.  Hopefully we can actually stay home for a while this time!!!  Thanks again to everyone for your support.....Betsy

  • 486. Re: Dean's latest challenges...
    warrior Registered Users
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    Good news! home is always where you want to be....I know it is many years since Dean's transplant but how is his wbc count? His immune system appears challenged with all the recent infections. hope you can stay home long enough to unpack and get  back some routine

  • 487. Re: Dean's latest challenges...
    bwarren25 Registered Users
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    Thanks so much Warrior for your care and concern.  Dean's WBC usually stays between 4-6 and then will go down to around 3 (sometimes a little lower) when he's fightining an infection. Usually he's not neutropenic.  His platelets usually stay around 100 (actually got up to 140 a couple of months ago for the first time in 6 years!) but will also go down to 70-80 or lower when he's fighting something.  In Feb. of this year Dean's regular transplant doc started him back on monthly IVIG infusions because his IgG was a bit on the low side so they hoped this might help prevent the reoccurring infections.  He was still doing that up until about 2 years ago and they decided to hold off and see how his immune system did on it's own. He was actually scheduled for his 3rd monthly IVIG treatment yesterday but will have to wait until we get home to do it because our insurance would only authorize it at one location (here at MDA or home).  We chose home so we don't have to come to Houston just for the IVIG treatments. We come here enough for other issues!  Dean hasn't been on steroids for almost 3 years and he's been off Prograf/Tacrolimus for over a year.  His immune system is definitely better than it was prior to transplant over 5 years ago when he was transfusion dependent, but it hasn't recovered like most transplant patients 5 years post transplant.  Thankfully, he's no longer on any immunosuppressants but he's still considered immune-deficient.

     

    I'm getting really frustrated myself about all these infections too and y'all are probably getting tired of reading about them too! Just last year Dean had various types pneumonia 5 times, including Aspergillis in Jan. 2011, acute appendicitis in the fall of last year, pneumonia in January of this year, cellulitis in April, and now the colitis.  He also had an episode of  of abdominal pain in Feb. that was probably also colitis but no CT was done to confirm and it improved because he was already on antibiotics for pneumonia.  We're scheduled to see the Infectious Disease doc and Pulmonary doc later this month for follow-up from his last pneumonia, and then we see his regular clinic transplant doc (who has been out-of-town for a couple of months) in June so i'm anxious to hear what they all have to say about all these infections.  Maybe the antibiotics Dean has been on for all of these other infections recently is keeping the pneumonia at bay for now. Any thoughts, comments, suggestions, etc., would be greatly appreciated......Betsy

  • 488. Re: Dean's latest challenges...
    mamawarrior Registered Users
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    Betsy, i am sorry you all continue to deal with infections. I have not posted lately but i do follow along in your updates on dean. I base alot of things on my experience with steven and his infections but dean puzzles me with the multiplle infections of various sites. Steven is also 5 years post transplant and has struggled with respiratory infections from transplant. He was hospitalized 12 times in the first year and half with infection issues. Slowly his immune system has improved and his cd4 is finally in the bottom of normal. We were told from the get go that allogeneic transplants are at an increased risk of bacterial sepsis of the encapsulated organisms for several years post transplant. One thing they have done for steven is to immunize him for pneumonia (3 times as his immune system has struggled to mount an immune response) He also has been immunized against meningitis twice. The immunologist checks his titers time to time. He also has had IGG subclass deficiency which has improved with time also. Last year was horrible for us, steven was sick every 2 weeks, numerous sino pulmonary issues,including pneumonia, and his wbc dropped in the 2 range at one point with platelets below 100. He has been on antihistamines, inhalers, nasal sprays, his immunologist has followed his PFTs and adjusted his bronchial dilators a few times, he is now on dulera but still uses nasal sprays etc.. I don't know if it was the change in medications, or another year of immune system recovery but thankfully, this winter has been much better than last. He still has had a few infections but certainly not every 2 weeks like last year and he has managed to work full time and go to school for his masters degree..

     

    So my question to you based on my experience but certainly not comparing steven infections to the difficult and constant battle dean has been on, but has dean been immunized and had his titers checked? How is his cd4 (T cell count). While steven has pulmonary damage related to chemo/TBI etc,predisposing him to respiratory infections,  if i recall dean had bisulfan and was diagnosed with bisulfan lung?? How is his pfts on a good day, does he have pulmonary damage that increases his risk of infections on top of an already immune deficient system. Were they able to get approval on the pulmonary vest.

     

    I wish i knew a little more about antibiotics and as you know antibiotics are bug specific. But i am curious what there thoughts are regarding the antibiotic usage. While necessary because of his respiratory problems, do they feel the frequent or chronic use of antibiotics could be partially responsible for the colitis??

     

    If anything i have probably asked more questions than provided answers. The whole thing intrigues and amazes me (sick as that sounds) and i too would be interested to hear warriors response. .

     

    I know it must be repetitive but i really hope dean gets on some solid ground for awhile. You all both need it. (((hugs)))

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

    We're not tired of reading about Dean's issues; we just wish we didn't have to.  I'd rather hear about a much-deserved vacation but in lieu of that, we want to know how Dean is doing.

     

    My son got home from the hospital today, finally.  They are still growing the stuff they pulled from his lungs and said it could take 3-4 weeks for something to show up.  The meds they give him for colitis can cause lung issues.  He has ulcerative colitis.  He's had a rough time for the last year.  When they treat the colitis, it kicks off c-diff, and treating his c-diff makes the colitis worse so it's a vicious circle.  Hopefully Dean won't need to deal with that on top of his other fun stuff.

     

    Take care,

    Kelly

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

    Dean and then you are the ones most annoyed at all these infections We are here to cheer you on. The reconstitution of the bone  marrow and the immune system post sct is an amazing and complicated process. In simple terms we need wbc, platlets and rbc and after engraftment we follow cbc daily with baited breath.  The immune system is much more complicated than just wbc. There is an innate and an adaptive immune system and there is a cellular  and antibody base immune responses. There are T cells and b cells.  I would ask Dean's doctors if they have measured the ration of cd4+ t cells to cd8 +T cells, there should be  more cd4 T cells than cd8 t cells. CD4 cells mature in the thymus so you might ask if his thymus has recovered. When they vaccinate Dean does he make anti-bodies?  The question for the infectious disease folks, if they have plotted Dean's infections, the infectious agent and the anti biotics that he has been given.

    Are they selecting for a super bug that is  more anti biotic resistant? Should he be on a longer course of IV antibiotics at home? The type of bacteria he is getting gram positive or gram negative can give them a hint about the efficacy of his immune system.  I wish I could tell you a magic pill to take to help his immune system.... hope you are home soon

  • 491. Re: Dean's latest challenges...
    mamawarrior Registered Users
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    Interesting enough, there was a phase 1 clinical trial at duke, that completed in 2010, on thymus transplantation following u cord transplantation.

     

    http://clinicaltrials.gov/ct2/show/NCT00597441

     

     

     

     

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

     

    I'm getting really frustrated myself about all these infections too and y'all are probably getting tired of reading about them too!

     

    Damn right!  So tell him to knock it off, would ya?

     

    We're only tired of it because we're tired of Dean being sick and hurting.  We want him to get back like the rest of us have.  I know I just want ya'll to get out of the woods once and for all and I know everyone else agrees.

     

    However, you might not post here so much if he ever gets flying straight so I kinda have to pull for minor issues anyway.

     

    I'm glad for the new progress and I hope he continues to improve and doesn't look back.  As always, keep us posted.

     

    Blessings

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

    That sucks, Kelly.  That's just too young to be tied up with this baggage.  I hope they're able to figure out how to put this to an end without anything major.

     

    Blessings

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

    Tex wrote:

     

    That's just too young to be tied up with this baggage. 

    You're right!  I keep telling him I'm too young to be tied up with his baggage.

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