4 months post transplant

Please post here your experiences of MDS as a patient, carer, family or friend

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clareybabs
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Joined: 15 Dec 2012 23:51
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4 months post transplant

Post by clareybabs » 10 Aug 2013 16:18

Admission date - 5th april 2013 Hi all, welll i have just got home 4 months post transplant, chemo, total body irradiation and stem cell transplant went so smoothly, it was after that i got all the complications. i was really hoping to be in hospital for 4-6wks, but a week of so after the transplant i started to struggle with my walking, legs/calfs very painful and swollen making it hard to mobilise. apparently kidneys and liver weren't functioning properly causing build up of fluid in legs, i was suffering from VOD, Was coping okay with this, mobilising slowly, just taking it one day at a time reallly. Then i started with abdominal pain - severe, ended up going for a scan - which showed shrivelled spleen, another possible complication, but never been seen in newcastle before, i was taken to emergency theatre, where 5 litres of fluid was drained off - numerous pints of blood later and several hours in theatre i ended up in critical care. Early hours of morning again had to go to emergency theatre for the same procedure - again nursed in critical care - post this i couldn't remember anything apart from waking up in itu, after being nursed there for 3 wks - due to burst spleen and severe pneumonia. During this time i had also suffered from serotonin syndrome - inflammaion of the brain, due to incorrect medication mixed together - family were told may be brain damaged and may not pull through, but cos i'm a little fighter, pulled through. Was transferred back onto ward - where i was in for another 4 weeks for rehabilitation. Due to being immobile for so long, legs, back, bum,stomach were full of fluid, so couldn't mobilise, initially had to rely on the nurses for everything, i then started to mobilise slowly, getting stronger every day, eventually being able to mobilise independantly with a stick, and finally being able to shower self and climb upstairs - which meant discharge - was discharged on 12/7/13 only to be re-admitted 5 days later with swollen painful abdomen, again spleen had burst - leaking fluid into stomach - this time had spleen removed - spending another 3wks re-couperating, final discharge date - 5/8/13 - been home 5 days now - difficult and tiring, taking one day at a time, but also thinking about what i and my family have been through these last few months and just thank god i am still here. i am 100% donor now, everthing seems to be fine with bloods at moment, although have just re-covered fromj the virus CMV, Just wanna say to everyone who is reading this - keep positive and you will get through anything, look at me.
CLAIRE - 42YRS - DIAGNOSED WITH MDS (RAEB) - POOR CYTOGENETICS WITH MONOSOMY 7 AND AN EXTRA X CHROMOSOME - getting supportive care at moment - weekly blood tests and regular top ups with blood, awaiting a bone marrow transplant
janetstanford
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Joined: 01 Nov 2010 17:54
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Re: 4 months post transplant

Post by janetstanford » 10 Aug 2013 20:24

Claire
What can i say other than you have been to hxxl and back busted spleen wrong meds mixed possible brain damage infections and just to cap it off a BMT .but i am so pleased you are well and have survived and are finally at home at ease and with your family who must be so pleased to have you there back home at last .and yes you are a little fighter and i think you should bottle that spirit of yours and give it away to help all others with a serious illness
Again i am so happy and pleased for you keep well
Janet x
MollyP
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Joined: 04 Mar 2013 13:01
Location: South East England
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Re: 4 months post transplant

Post by MollyP » 11 Aug 2013 19:04

Well done Claire. You had a hard time but it's good to know you are now home.
Best wishes
Molly
Xx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
Russell
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Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
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Re: 4 months post transplant

Post by Russell » 11 Aug 2013 22:50

Blimey, that's a pretty horrid 4 months! So glad you are so positive after that! Its the only way to be. Hope the recovery goes to plan. Hopefully you'll run a Marathon like me!
Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
and
4 other Half Marathons, a 10 miler and a Spartan Race!
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: 4 months post transplant

Post by chris » 12 Aug 2013 18:09

Hi Claire

Thanks for posting but gosh what an horrific tale. What to say?! You have certainly been through the mill. Bad enough to suffer "normal" complications but to have addtional problems because of a medical mistake with drugs is really taking the biscuit.

I hope you are well on the road to recovery now with no further complications. You and your family have had such an anxious time. Take it easy.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Mym
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Joined: 11 Jul 2013 13:06
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Re: 4 months post transplant

Post by Mym » 13 Aug 2013 21:36

What a nightmare for you! Congratulations on being 100% donor. I hope that's the worst of it over for you and that you feel much better soon.
janetgreen
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Joined: 01 Aug 2011 19:11
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Re: 4 months post transplant

Post by janetgreen » 25 Aug 2013 21:59

Hi,

I hope you continue to make progress, even if only small ones to begin with.

Janet
Wife of Ken, 57, diagnosed with MDS (refrac cytopenia, multi-lineage dysplasia with 5q- and del of 12 and 13) in Jan 2011, was transfusion dependent. Stem cell transplant on 14th December 2012 but sadly passed away 20th July 2013. Live in Barnsley.
punda milia
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Joined: 01 Oct 2012 14:08
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Re: 4 months post transplant

Post by punda milia » 26 Aug 2013 19:07

Dear Claire

You are so brave to have come out the other side after all those awful setbacks. I have so much admiration for you.

Best of luck in the future. My husband and I will certainly be thinking of you as you recuperate
at home.

Diana
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait
clareybabs
Posts: 32
Joined: 15 Dec 2012 23:51
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Re: 4 months post transplant

Post by clareybabs » 01 Sep 2013 18:10

Hi all, i was home 2 weeks, then re-admitted on tuesday 20th august with abdominal pain again - CT SCAN completed and showed i had an abcess where spleen had been taken out - also was suffering from a e-coli in urine - also a bad infection. was kept in hospital and treat with IV antibiotics as well as anti fungals. went for an ultrasound scan on friday - i have pockets of fluid in my abdomen from abcess - they will need to repeat CT SCAN to see if it is worse from the previous one - if so will have to be drained, CT guided. i'm on weekend leave at moment, go back on monday. Probably get scan on tuesday, but really need to be out for wednesday as supposed to be staying overnight in hotel for husbands birthday. Also have adhesions in stomach, from where they removed spleen, don't do anything about it, just pain relief. So looks like i'll just have to put up with the pain for now, hopefully it will subside in time
CLAIRE - 42YRS - DIAGNOSED WITH MDS (RAEB) - POOR CYTOGENETICS WITH MONOSOMY 7 AND AN EXTRA X CHROMOSOME - getting supportive care at moment - weekly blood tests and regular top ups with blood, awaiting a bone marrow transplant
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