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  #1  
Old Fri Feb 22, 2013, 08:10 PM
Cam Cam is offline
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Readmitted into Mayo at day 78..
Well the BK has gotten progressively worse. I am having issues with clotting and they are afraid it could damage my kidneys. So I have been admitted back into the hospital... They are lowering my imuno suppressants to let my body fight this.. I know this will pass. Then I can make the run to day one hundred.. I am thinking of having a shirt made that says Drill Here Now pointing to my hip...

I am thinking that in November I am going to try and do a half a marathon.. Does anyone think this would not be doable? Let me say I am not a runner, and will be a lot of work... But I think it would be awesome to finish this year out better than I started it which was getting my BMT on December 9th of 2012. Then finish 2013 with a half marathon at Disney world...
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #2  
Old Sat Feb 23, 2013, 08:53 AM
Marlene Marlene is offline
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Sorry to hear that Cam. John too had clotting. Have you tried laying on your side to urinate in one of those plastic urinals? I know it's very awkward but sometimes that's the only way to get things going.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #3  
Old Sat Feb 23, 2013, 07:32 PM
SLB SLB is offline
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Sorry to hear you are back in hospital Cam. Can you tell me what is BK? Wishing you a quick recovery.
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #4  
Old Sat Feb 23, 2013, 07:58 PM
Cam Cam is offline
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The short of it is BK is a virus that we all have. But with BMT patients the imuno suppressant drugs keep you from fighting it. From research I have seen that about half of BMT patients come down with it, but at an early time after transpant.

So to counteract it they have to lower your imuno suppressant drugs so that your body can fight it. But the problem is that those same drugs also keep your body from rejecting your bone marrow. It basically is effecting my kidneys and bladder, is like a UTI times ten. You pass a lot of blood and clots in your urine. I have a catheter to help clear it up as well as lowering my drugs to make sure I can fight it with my immune system... I will hit day 80 tomorrow... So I will be celebrating in the same room I had my tansplant in... Is there any irony in that???
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #5  
Old Mon Feb 25, 2013, 02:38 PM
Momhope Momhope is offline
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hope you doing good
how you doing today , is everything better?
hope you are doing very good?
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  #6  
Old Mon Feb 25, 2013, 10:01 PM
MDSPerth MDSPerth is offline
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Sorry to hear about this hiccup Cam. I have read your posts with much interest. Keep up that positive 'we'll fight this' attitude and it will not be long before you jump with flying colours this hurdle that has been placed in front of you. You have all our support.
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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  #7  
Old Mon Feb 25, 2013, 10:29 PM
Cheryl C Cheryl C is offline
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So sorry to hear about your set-back, Cam. My best wishes for your speedy recovery. You are an inspiration to all of us with your positive attitude!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #8  
Old Tue Feb 26, 2013, 09:21 PM
Cam Cam is offline
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Day 82 and I am still here. Seems that BK passsed but the kideny/bladder issues continue.. This too will pass... Has been good I have been able to talk to a few people who are starting the BMT journey and hope I have been encouraging... Is funny I am in the same room I was in for my BMT but this time I get to leave..
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #9  
Old Wed Feb 27, 2013, 11:28 AM
squirrellypoo squirrellypoo is offline
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Don't let the readmission get you down - at the start of my transplant they told me that EVERYONE will get readmitted for something or other and it's just part of the process. I ended up back in for 5 weeks after mine, which was longer than my transplant itself!

Quote:
Originally Posted by Cam View Post
I am thinking that in November I am going to try and do a half a marathon.. Does anyone think this would not be doable? Let me say I am not a runner, and will be a lot of work... But I think it would be awesome to finish this year out better than I started it which was getting my BMT on December 9th of 2012. Then finish 2013 with a half marathon at Disney world...
I think it's doable. I ran a 10K race for my 1st rebirthday, and I think a half is well within your grasp. I was very surprised to find that I hadn't lost as much fitness as I thought even considering what I'd been through and that I'd been off running for 18 months. If you're starting as a beginner, it's going to be a tough slog but the secret to running is that it's 90% mental, and you've already proven you're mentally tough. And if your goal is to finish, and no particular time, then you'll be just fine - people regularly walk half marathons and they've not been through half of what you have! It's important to have things to look forward to, and I'd say if you want to do this, sign up now so you're committed.
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #10  
Old Wed Feb 27, 2013, 08:37 PM
Lori Patrick Lori Patrick is offline
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Cam, Hang in there. I have been hospitalized probably 4 times since my transplant. Recently my liver began to fail.... but the doc was able to shuffle my medicines and it is now almost normal. My Dr. and I thought I was going to have to be hospitalized - but thankfully I was not. Think positive and make goals for yourself. (I am not a runner!!) Lori
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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  #11  
Old Sun Mar 3, 2013, 08:45 PM
Cam Cam is offline
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Home on Day 84
On day 84 I was allowed to come home. I still have the issues with BK but not as bad. It basically came down to whether I wanted to stay in the hospital for a long period of time or not. I can handle the pain involved better than i can handle staying in the hospital. So add some more meds and lets keep marching to our first benchmark of 100 days...
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #12  
Old Mon Mar 4, 2013, 07:47 PM
Lori Patrick Lori Patrick is offline
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March on Cam! That's the attitude you need to keep. Day 100 will be here before you know it!
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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  #13  
Old Sun Mar 10, 2013, 04:27 PM
Cam Cam is offline
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On day 94 I am still having issues with with BK. It seems that this could last past day 100 but on the plus side once I get to day 100 they will start to get me off my cyclosporin so that should greatly help me get rid of the BK.. I am really hoping this will end soon. The hemoraging bladder and kidneys are getting old.. I feel like a three year old again... Haing to go "potty" all the time as my 2 year old tells me...
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #14  
Old Fri Mar 15, 2013, 05:08 AM
Cheryl C Cheryl C is offline
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Cam - if anyone can beat this with a positive attitude, you can. Hang in there, mate! I am always interested and concerned to hear how you are progressing and I'm sure there are a lot of others on this forum who are too.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #15  
Old Wed Mar 20, 2013, 01:40 AM
babs babs is offline
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Sorry to be stupid but I'm new. What's BK?
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  #16  
Old Wed Mar 20, 2013, 01:53 PM
Cam Cam is offline
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It is a virus that causes your liver and bladder to become a bloody mess. Your urine becomes full of blood and clots. (Sorry to gross you out) You also have to go to the bathroom alot with little warning. At least this is my experience... Everyone carries the virus but the amount of imuno suppressant drugs we have to take sometimes makes it show up. To beat it you have to cut down those drugs enough for your body to fight it off. It is not fun.
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #17  
Old Thu Mar 21, 2013, 02:57 PM
babs babs is offline
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Quote:
Originally Posted by Cam View Post
It is a virus that causes your liver and bladder to become a bloody mess. Your urine becomes full of blood and clots. (Sorry to gross you out) You also have to go to the bathroom alot with little warning. At least this is my experience... Everyone carries the virus but the amount of imuno suppressant drugs we have to take sometimes makes it show up. To beat it you have to cut down those drugs enough for your body to fight it off. It is not fun.
Sounds horrible. How are you doing now?
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  #18  
Old Thu Mar 21, 2013, 07:59 PM
Cam Cam is offline
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I am still urinating blood and clots but I am sleeping more durig the night. It could be worse, I could be back in the hospital. It is not as often as it was two days ago.. So improvements are being made....
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #19  
Old Fri Mar 22, 2013, 10:38 AM
babs babs is offline
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Quote:
Originally Posted by Cam View Post
I am still urinating blood and clots but I am sleeping more durig the night. It could be worse, I could be back in the hospital. It is not as often as it was two days ago.. So improvements are being made....
Yay for that! I'm pulling for your complete recovery! I have an appt to meet with Dr Fortan (sp?) next Friday.
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