What he/she says
Zara Noor my daughter born Premature in 8 months on 03.01.2016 with less weight around 1.78 kgs then she admitted for 8 days .
After 6 months she is again admitted in Lotus Hospital due to Severe fever and rashes on the body so there she got treated over there around 10 days hospitalization CBC test was done regularly 2 times a day after day, there is a low platelet count. After doing all the tests, count was very low and they did Bone marrow Aspiration and diagnosis with Thrombocytopenia under evaluation/UTI infection after decreasing the fever platelets was 60-70 thousand they discharge us to review after 1 month.
After that we have consulted our family pediatric Dr for further expert advice he was preferred me to take my daughter to American Oncology Institute/Citizens hospital for further in the month of November 2016 with CBC report with 50 to 50,000 count at that time and she was advise us to be in regular follow up once in month with CBC report and told us there is no treatment available present. After weight loss happened, me and my family was shocked about the situation but she said to do again/repeat Bone Marrow Aspiration/ Biopsy for correct diagnosis after a month. She did Bone Marrow Aspiration (Biopsy) and diagnosed as Thrombocytopenia with Anemia. After that doc told us to wait for some days till the patient platelet down to 20,000.
In August 2017(20TH month age) my daughter was suffered with high fever and severe Thrombocytopenia with Anemia and she required SDP (platelets transfusion) because of low counts, which again happened a month later also.
After these my daughter was required regularly that platelets/Blood transfusion in every month it was a depression time for us but any how we got platelets/blood from one whats-app group AHIRAA Donors thanks to all of them who supported on humanity.
During this Supportive treatment our treating doc in AOI referred us to Dr S K Gupta sir for possibility of BMT. He explained about Bone Marrow Transplantation and about life risk (if do BMT than 5-15% risk and if don’t than much higher risk) and need a HLA matched donor for transplantation.
We met Dr Pragnya @ NIMS Hospital Genetic Department to meet to find the possibility of Genetic disorder.
Dr Pragnya after examining post and present history she written 1 Genetic test which is around 30,000 any how I arranged that money and did that test on 03.Oct.2017 and with in 45 days on 27.Nov.2017 I got the report and its confirmed that Genetic disorder is their. Said there is a possibility to cure from these problem thought BMT only after these report we were very sad/depress and panic situation for going to BMT transplant because it is very risky and anything will happen during this process.
And other thing regarding donor and money because I don’t know how we get donor and how we will arrange money because cant effort that expenses in spite of having Aarogya Bhadratha . I don’t know it will cover or not.
On the other site my father i.e Zara Grand father and Grand mother afraid about these transplantation because no doctor was given 100% guarantee of her success.
But me and my wife explain there is Do or Die situation for us, every Dr said transplant should be done as soon as possible for better results. After our family understood the situation and said there are ready with us.
In these days we also tried some Homeopathy medicines for a month but the problem was not cured. In between these days in Aug 2017 to May 2018 my daughter Zara was transfused 12 times platelets and 8 times blood transfusion and got fever and infection 4 times.
Finally my family consulted Dr S K Gupta sir where he re-explained clearly about transplantation and give long term success rate of 70% and told not to afraid and ask us to do HLA test for stem cell donation. Me and my wife was given HLA Sample at Citizen Hospital. After 15 days report has come with negative for both husband/wife got half matched. After seeing reports my mother and my family went into depression and it was a bad day at my house.
After that Dr S K Gupta sir asked to do HLA testing for my younger daughter Zoya Noor(16month old) as we are panic how she can give her stem cell. We were concern about her because she is also 17 months old baby. But sir explained nothing will happen to donor, we can take fresh stem cells from blood itself and even as low as 6month. But we gone with our 2nd baby HLA matching and finally my 2nd daughter Zoya was matched 100% , that was a very happy day for me and my family because without donor we can’t do Zara transplant.
As I am a Govt employee Police Dept in Telangana. I started my Govt Aarogya Badratha process for Bone Marrow Transplant for my daughter and got approval with in 15 days from ABS. I am very thankful to Chairman/ DGP of Telangana state who approved and sanctioned my daughter Bone Marrow Transplant expenses, it gave me a lot of relief and saved my daughter life.
Finally we got admitted for Bone Marrow Transplant at American Oncology Institute on 13 May.2018 under Dr S K Gupta. He said to arrange 5/5 donor for platelets and WBC I got some 3 donor for platelets but getting difficulty in finding for WBC donors but the treatment had started. BMT room’s atmosphere also a great experience it has silent, very clean atmosphere Already the treatment was started chemo medicine was given for 1 week. It was a difficult time for us thinking and praying that Zara will get well soon after chemo my 2 daughters Zoya Noor admitted and from her stem cell was collected on same day Dr S K Gupta sir transfused to patient Zara Noor my daughter the day was spend my family is panic and tension but luckily after 12-13 days of stem cells infusion, she showed good sign in her body. During these 30days hospitalization she did not suffered much (which we were worried as per Google search and our other relative information). There was no fever, Infections, loose motions , and even no platelets, WBCs were transfused . After 30days of hospitalization our family and my wife my relatives are very happy the way Dr S K Gupta sir and his team done their treatment.
We did prayers and thank to almighty (God) who gave new life again to Zara Noor.
And the way Dr S K Gupta sir prepared us to done BMT and his treatment was very excellent and caring toward patients is delightful.
We also Thankful to American Oncology BMT STAFF SPECIAL NURSES THEY WERE VERY FRIENDLY WITH MY BABY AND MY WIFE THE CARE AND MONITORING WAS VERY EXCELLENT BY ALL THE STAFF.
Dr Gupta sir told initial 6months to 1yr is very crucial and she may require re-admission and once on 45th days of BMT admitted with severe infection platelets again dropped to 40-50k but she recovered well and not its close to 6month post BMT and she is doing well.
Dr Gupta sir told that she is suffering from one genetic syndrome known as Hoyeraal Hreidarsson syndrome where its not just aplastic anemia there other organs like brain is also affected.
These disease Aplastic Anemia like cancer will hurt a lot for all family and disturb there life as my family suffered a lot even spend a single happy moment in life even you have very rich person no matters your health is important in life.
- Date 11 Dec 2018
- Doctor Name Dr. SK GUPTA
- Category Liquid Organ Cancer Disorders, Liquid Organ Non-Cancer Disorders