samyuktha' BMT

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Offline Sharmin

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Re: samyuktha' BMT
« Reply #15 on: September 15, 2015, 01:27:48 AM »
This is such good news!  Hoping for ongoing improvement in her health!
Sharmin

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Offline samyuktha

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Re: samyuktha' BMT
« Reply #16 on: September 15, 2015, 05:30:59 PM »
Hi friends,

Today we got samyuktha's donor chemerism report.
Its 100% donor cells.
Thanks to all your prayers and best wishes.
Please continue to keep samyuktha in your prayers.

God is great .Gods blessings brought us so far.

Take care,
Regards ,
Viji
S.Vijayalakshmi

Re: samyuktha' BMT
« Reply #17 on: September 15, 2015, 09:25:47 PM »
Good luck!The cure of samyuktha gives us joy as if it was our children.

Re: samyuktha' BMT
« Reply #18 on: September 16, 2015, 06:58:11 AM »
My prayers for Samyuktha....God Bless!

Re: samyuktha' BMT
« Reply #19 on: October 08, 2015, 01:50:13 PM »
Hi, can you inform where you did bmt, it was matched unrelated or haploidentical.
How's the kid now... my prayers

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Offline samyuktha

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Re: samyuktha' BMT
« Reply #20 on: December 10, 2015, 07:19:35 AM »
Dear Friends,
            Samyuktha has completed 100 days post BMT.She is doing fine by God's blessings and all your well wishes.Her counts are fine except for platelets which has come down to 70,000.Her Doctor said not to worry  and it will take time for the cells to settle.She is on regular diet sans spice especially  pepper.Even honey is prohibited .Thet were planning to remove her central vein line on 9th December but because her platelet is less then 1,00,000 her Doctor  has postponed libe removal .Actually her platelets reduced from 96,000 to 70,000.Is this common for post BMT patients to have fluctuations in platelets ?

She is on below medications;

Pangraf : 0.5 mg - 0 - 0.25mg
Zovirax 400mg : 1-1-1
Pendits 400mg :1-0-1
Omnacortil 5mg : 1-1-1
Z&D : 0-1-0
Verz :100mg -0- 50mg
Cellcept 250mg : 1-0-1
Septran P : sat&Sun (2-0-2)
Hepatinic syrup :5ml-0-5ml
Calcimax syrup:5ml-5ml-5ml

We have done her 4 th Donor chemirism test on 8th December.Result yet to come.Hoping the best for all the Thalassemia  children.

GOD BLESS YOU ALL.

Take care,
Regards,
Viji

S.Vijayalakshmi

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Offline Sharmin

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Re: samyuktha' BMT
« Reply #21 on: December 10, 2015, 03:56:04 PM »
Viji,

That is such wonderful news!! I wish Samyuktha ongoing progress and good health.  My understanding is that their can be variation in platelet levels, but I do not know a lot about BMT.  I hope that the platelet issue resolves soon too.

Best,

Sharmin
Sharmin

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Offline Bostonian_04

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Re: samyuktha' BMT
« Reply #22 on: December 11, 2015, 12:17:33 AM »
Such a wonderful news! With god's blessings may Samyuktha gets stronger and healthier. sorry, I do not know much about BMT. Hopefully other Thalpal's will be able to answer your question. I am just happy to know Samyuktha's wonderful progress.
Quis custodiet ipsos custodes ? - Plato

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Offline Himanshu Kumar

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Re: samyuktha' BMT
« Reply #23 on: December 13, 2015, 05:04:39 AM »
Mcv and wbc are the two most critical indicators post bmt. Wbc formation is the first sign of engraftment and mcv indicates the size of rbc formation. For non thals mcv value ranfes between 80 -100. After bmt mcv keeps rising till it reaches 100 fl. And thereafter stabilises anywhere between 80 to 100 fl range. Of the three types of cells wbc,rbc snd platelets,  platelets are the slowest to develop in the body. I dont think there is anything to worry as long as mcv is in the range of 80 to 100 fl and wbc is above 4k.
Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.

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Offline samyuktha

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Re: samyuktha' BMT
« Reply #24 on: December 15, 2015, 05:36:45 PM »
Dear Friends and Himanshu,

                                 Hope you all are doing fine.Today samyuktha had dressing at the hospital.She still has the central port near her right chest.The doctor will decide on removing the line once her platelet count increases to 1,00,000.

We did CBC for Samyuktha today.The Reports are as below; She is 106 days post BMT today.

WBC : 8.4  ( last week it was 10,900)

HB   : 13.9 (Last week also it was 13.9)

Platelets : 1,09,000  ( Last time it was 70,000)

So platelets have increased but WBC dropped a bit with a stable HB.

Hope everything is fine as of now.Got a little anxious.Next week we have OP with her Hematologist and we will do one more CBC and Tacrolymus test before she decides on Line removal for Samyuktha.

Please continue to keep Samyuktha in your prayers and thoughts.Thank you all for always being there to advice me and encourage me.

Take care all of you,

Regards,
Viji
S.Vijayalakshmi

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Offline samyuktha

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Re: samyuktha' BMT
« Reply #25 on: January 02, 2016, 04:10:32 AM »
Dear Friends,

        Wish you all a very happy and healthy New Year 2016.

On December 25 th samyuktha had headache,vomiting and loose stools that were watery and greenish.She was admitted in the hospital for a day.They took CT scan and the report was normal.They took CBC,SGPT,CREATININE<MAGNESIUM tests and all report were normal.
She had developed GRADE 1 GVHD of the GUT.With steroids and Antibiotics by IV ,her condition became better and we got discharged from Hospital.
Her medicines were altered,Instead of CELLCEPT 250mg ,BUDEZ CR3mg is prescribed.Instead of Prednisolone 5mg , MEDROL 8mg and 4mg is prescribed.

She is fine as of now but is complaining of weak calf muscles  and her Doctor said its because of low Magnesium and we can give a correction by IV line.she has also developed BP for which ENVAS 2.5 mg is prescribed.

BMT is the only cure for Thalassemia but the Post BMT issues are more tedious than monthly transfusions.I pray to GOD to help us to get through this phase without further issues and problems.May God be with us all.'

Friends,Keep her in your prayers.we have completed 124 days post BMT.All because of GOD's grace and good wishes of kind people like you all.Please contione to pray for our dear Samyuktha.

Thank you all.
God Bless All Thalassemia children and patients with a positive cure.

Regards,
Viji
S.Vijayalakshmi

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Offline Lokkhi maa

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Re: samyuktha' BMT
« Reply #26 on: January 02, 2016, 04:55:41 AM »


BMT is the only cure for Thalassemia but the Post BMT issues are more tedious than monthly transfusions.


Little angel like samyuktha how they are sufferings !! May Allah help all of them and keep well and good health..
Lokkhi Maa

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Offline Andy Battaglia

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Re: samyuktha' BMT
« Reply #27 on: January 04, 2016, 08:05:35 PM »
It definitely sounds like loss of magnesium.

Stay strong. Studies of patients post BMT have shown they have a significantly better quality of life than patients under normal transfusion/ chelation regimens. It takes time to get past all the initial issues, but they do pass.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: samyuktha' BMT
« Reply #28 on: January 04, 2016, 08:28:34 PM »
Sounds like, while there have been a few bumps in the road, our little one is one her way to recovery and a healthy life.  This difficult time will pass and her quality of life will improve greatly - you are still within the initial stages.

Keeping your family in my prayers,

Sharmin
Sharmin

Re: samyuktha' BMT
« Reply #29 on: January 04, 2016, 09:33:45 PM »
After so much you and little one gone through, this will pass as well. It is road to recovery with few bumps.

In pray.
Regards.

 

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