My horror story

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Offline namitha

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My horror story
« on: September 12, 2006, 01:17:18 PM »
Hi everybody,

I'd like to share my horror story with all of you. Thal inter, had no problems whatsoever. Had a spleenectomy in CHU, Laussane, Switzerland. Was treated by Dr. Bernadette Modell. Seriously, I never thought about thal at all though I went in for regular trans and did desf. I had all the energy and strength and more than anybody else. Everything was smooth sailing. Academics, career and just about everything was on a high. So was I! Life was good until the person upstairs perhaps thought it was time to let me discover my limitations and signal to me that I am indeed different and need to understand that.

Though I can't recall some of the details, the major parts are burnt into my memory like tattoos. I will never forget the following incidents, days or dates. Never! Not till I die!

In my amnesiac state, I went about doing everything. On 11th December 2005, it was a sunday; I went to play cricket with my friends. And with a cork ball to boot!  :banghead Here a twist, there a twist, some swerves and the ball crashed into my right hip. The pain was so intense, I just plonked down there on the field. After a while, the pain subsided and I made my way home. I sneaked in without letting my parents know what was up. I thought I was superwoman and it was nothing and the pain would go away. And go away it did for sometime. Then in mid-Jan, the pain began to recur and interfered with my activities. I who was so active did not feel like doing anything much except popping pain killers and lying down. My parents noticed and then began my real horror story. Doctors, xrays, radio isotopes, and whatnot. :wah

On March 1, 2006, Dr. Shankar Kurpad, orthopedic surgeon (will describe him more later) examined my right hip thoroughly. I WILL NEVER FORGET THIS DAY. The soothsayer who asked Julius Ceaser to "Beware the ides of March" must have have meant it for me too. MARCH 1 will always be remembered by me as the BLACKEST DAY throughout my life. There is another coincidence to this DAMNED DAY. It was on this day that Dr. Beck in CHU told my parents that a spleenectomy will have to be done for me. I was 5 years then. My parents too remember this day. Further, on this ACCURSED MARCH 1, I was diagnosed with thal inter by Dr. Modell. Coming back to the present, I knew something serious was up from Dr. Shankar's expression. He immediately asked for an MRI and detailed blood work up, cbc, ALP, ferritin, the works. Got all this done on March 4. With every magnetic resonant wave, I knew something had gone wrong.  :wah

March 6, Dr. Shankar took a look at the reports and these are the words that have stuck in my memory ever since, "We have to put three screws."
I was convulsed with horror and fear. I never thought it would lead to this. I don't know how I managed to stay sane at that time. The next day itself I was put in Manipal Hosp, Airport road. That was were my doctors would operate on my undisplaced fracture at the neck of femur.

I must stop and tell you all about Dr Shankar Kurpad and Dr K Srinivasan. They are more than expert surgeons. They are the most humane people I have ever seen in my life. Their greatness lies in the way they do things for people silently. They did a lot for me and I mean a lot! Dr. Shankar did more than cure and heal me. He cheered me up, consoled me, and told me that things would be fine. His role went beyond a doctor. He has been so supportive and encouraging, helping me to get back to my normal activities and even helping me make career choices now when I cant really do what I used to before :-) It's thanks to these two great doctors that today as of now on 10th september, I am nearly normal. I cant stop talking about them and I cant thank them enough!

Back in Manipal, everybody there were also gems! The doctors, the nurses, sisters, and in fact the entire staff. I owe a lot to them. They did everything to make me comfortable and take away my fears. After a battery of tests and a super transfusion, I was ready to face the scalpel. Here again I digress to tell you about the people at my transfusion centre, Dr Latha Jagannathan and Sister Sameena and everyone else there. They ensured I got my usual washed and packed cells and sent in reserves in case I needed after the surgery. They also supported me and told me to boldly face up. Frankly speaking, I am chicken-hearted. After all these years of trans and desf, I still shudder when the needle goes in. At Manipal, hematologist Dr. Ashish Dixit, endocrinologist Dr. Arpandev Bhattacharya, and anesthetist Dr. Vasant Nayak did everything to ready me for the scalpel. All of them had encouraging words for me. Dr. Shankar Kurpad came all the way to Manipal to operate on me because he had promised to be with me (He usually goes to Manipal Northside). He came to see me the day after I was admitted too! Again and again I have to take my hat off to him. Dr Srinivasan assured me and my parents that CRIF was a minor procedure, but as we all know: nothing is minor for a thal. Everything is major. I take my hat off to Dr Srinivasan too for his reassurance and his excellent way of treating patients and interacting with them. Rarely do we come across such great souls on this wretched earth!

Coming to the major thing: the scalpel. March 10th. I was shivering and sweating at the same time in the pre-op ward . I was only 5 when i had that spleenectomy so I knew nothing then. Advantage! Ignorance was Bliss. Again it was Dr. Shankar who came in and convinced me that things would be fine. Most of you must be knowing that adult thals are generally poor surgical cases. The risk is more in our case, given the many factors. In such a situtation, I really appreciate the extent of care taken by my surgical team. From the anasthetist to the scrubbers and post-op care, it was excellent. I came out of it just fine with three shiny titanium screws (jus imagining).

The rest is history. I have to thank the medical team who took such good care of me. I still need to go back for some tests and check ups etc. For today, 10th September, it is exactly six months since I faced the scalpel. I still wonder how I came out of the whole thing. I was hopping on one leg for three whole months from mar to june. Then 50% weight bearing and then from july 100% weight bearing with walker and from Aug with a stick and now I can get rid of the stick too in another month or so. Doc Shankar has given me a clean bill. Its been a long story and a long recovery and I have think I've come a long way.

Till this thing happened, I never associated myself with thal. It's only now that I post regularly on this forum. I now know my limitations and know the meaning of life better than what I did before. I fully appreciate all the thals who are boldly facing hurdle after hurdle. Yes, when one has thal, most things become a hurdle. I take my hat off (actually I dont have one ;-) ) to  everyone of us who carry one despite our travails. It's easy to give up, but difficult to face up and stay on. Inspite of the troubles, I am really glad to see that people in this forum are cheerful. That's the way to go, the way to live. I never used to believe in the higher power before, but I know for sure that something higher than human beings exist. A power that will not allow us to do what we want always. Perhaps its for our own good. There is a saying in Hindi: Ghoda ko ishara aur gadhe ko laat meaning a signal is enough for a horse but a donkey needs a whiplash. I am that donkey who had to be given a lashing to understand my limitations and stick to the path ascribed.

I would like to really really thank all those who struggled with me, all those who cried with me, and all those who helped me when I couldn't help myself. Above all, my parents for whom this has been as much a shock as to me. They were always used to seeing me rushing about and fooling around. To see me confined without mobility, it must have taken a lot...

I know my mom and dad will read this, so this is for them:

Sab ko bhool, ma baap ko bhoolo nahin;
Anginat hai pyaar unki, jo hame samjhi nahin!

Translates approximately like this: U can forget everybody, but dont forget ur parents. Their love is infinite, which we may not have understood before.

I want my story to be a signal to all those who are careless about their health. Please take care because health is the ultimate!

Peace and Health to ALL!
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.

Max Ehrmann's Desiderata

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Offline KHALIFA

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Re: My horror story
« Reply #1 on: September 12, 2006, 10:54:44 PM »
Do you know ! you story can be a movies  :biggrin  everybody have good story to share the other because some people they have some kind of problem but i feel sorry for them because they don't know or they can't determind how to find a salution .....
                     GOD BLESS YOU ALL
                          KHALIFA
RED_PILOT

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Offline SalD

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Re: My horror story
« Reply #2 on: September 12, 2006, 11:16:55 PM »
Wow Namitha!  That's an amazing story!  It is great to hear that you had a good experience in the health care system, and the strength to go through that and get back on your feet (excuse the pun).

SalD.

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Kathy11

Re: My horror story
« Reply #3 on: September 13, 2006, 12:20:20 AM »
Hello Namitha,
Thank-you for taking the time to share your experiences  with us all ,I sense that it has made you into a stronger person with appreciation for others. There are always good stuff that comes out from suffering.
I wish you the best.kathy

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Offline jzd24

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Re: My horror story
« Reply #4 on: September 13, 2006, 01:28:27 AM »
namitha,
     That is quite a story! You have kept going through the whole thing and have come through with a positive attitude. That is amazing - good for you. I know you will get stronger every day.  :flowers
     I agree with Khalifa that it could be a movie. It would be great if someone made a documentary about Thalassemia - different people could be interviewed, telling their life stories; a transfusion could be demonstrated as well as an infusion pump. I think it would be really good. Talk about exposure and advertisement for thal gene screening. Anyone out there majoring in film or know anyone who would be interested in doing this? They even have a category at the Academy Awards in Hollywood for documentaries.  :idea :hmm
     Anyway, good luck, namitha, hope all goes well for you. Your attitude is more than half the battle. Jean   :smile

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Offline namitha

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Re: My horror story
« Reply #5 on: September 16, 2006, 01:07:17 PM »
Hi all,

Thanks so much for the encouragement. I really think we should look at making some documentaries on thal. It should be educative and informative too. It's imperative that we check the spreading of thal. A time should come when there is no trace of thal in the world! That is what I want.

I want all thals to take care of their health and remember that we have some limitations.

Peace to all

Namitha
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.

Max Ehrmann's Desiderata

Re: My horror story
« Reply #6 on: September 17, 2006, 06:17:07 PM »
Hi Namitha

I am on this site after a few days and I didnt realise that you were going through so much, when I was asking you if we can come on the chat sometime, because you wanted to know so much about my daughter.
I am really proud of you that you have come out a winner out of your situation.You will be just fine in a few more days and go back to your active days.

Well,  the ordeals and tribulations all Thals face  throughout their lives does'nt seems to be  just enough.. somehow or the other, they too go through other ordeals, which just come out of the blue and make them suffer.

Here is my horror story : Namitha, here in India you had your parents and excellent doctors caring for you, but my horror story is different.. and  it was just the pain and frustrations as a mother for not being able to be with my child when she was in so much pain.

My daughter went to school to do her MS in the USA, at The University of North Carolina ,  Greensboro.
As a student, she obviously did not have a car in the first 6 months. So she was dependent on her fellow american students for taking rides to the Grocery store etc.

On one such occassion, as she was getting  out of the car ( an SUV.. commonly  used by boys in the Universities in the USA), this friend suddenly reversed and he actually ran the SUV over my daughteri's ankle.. and her ankle broke.
She was taken to the Universitty ER, from where they sent her to the larger hospital in Greensboro.
Now, I am sure, Andy can tell you how most ERs of the USA function and what kind of priorities they can have, when they are getting bullet wounds and stabbing cases coming in and out of the ER.. :smile2
.....here a broken ankle is way down in priroty.

This happened on a saturday afternoon and my daughter was in the ER by 2 pm. She was not seen by any doctor till 6.30pm and then when the doctor eventully examined her,  said she had to be operated and a wire had to be inserted, and this  was a major surgery.

But the operating surgeon did not have any dates until Thursday and plus, he had to get all her medical history pulled up from her hematologist.

So they just put her on  high doses of painkillers and put a kind of support  bandage and sent her home.
So you can imagine, what she , in a strange country and with so much pain,  feelinng like and what I must have gone through hearing that they will not do anything until after 5 days and there is Nothing that I can do about it to relieve her of her pain.

Well, she was operated upon on that thursday and the doctors told her she could go home in the evening.. but she took an extra day at the hospital by paying extra money and came home the next day.
Then opened the cast after 4 weeks.. but again after 6 months, she had to be operated again to take out the wire as doctors felt that since was young, she ought to take out the steel wire.

So things like this happen out of the blue and there is nothing one can do but accept. And I always believe that someone out there will always be there to help when your dear or near ones are not by your side in times of need. My daughter's room mate - (Shibani) and some her friends went all out to help my daughter. And it was during exam time, so they used to literally carry her to the car and drive her to school.maybe they did what I as a mother could not have done.

So as I have said before, all of you are God's chosen ones and HE will always give you the strength and will power to face any challenges that may come your way and you will emerge a winner.

I will look forward to talking to you soon Namitha
You take care
Love
shikha
« Last Edit: July 15, 2007, 05:41:06 PM by Andy »

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Offline namitha

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Re: My horror story
« Reply #7 on: September 18, 2006, 08:23:07 AM »
Dear Shikha Aunty,

Thanks so much for the support and encouragement. I understand how it feels and it is worse when you know your daughter is suffering and you are not near her. Thank god, Dee has come out safely. I hope she is doing fine now. This is for you your daughter  :hug You been so bravely facing things out there, here I am cribbing though my mom and dad are there to make me comfortable. I guess we all need to learn from the experience of others.

I just pray that god or whoever it is who controls these things keeps us all in good health and cures us fast by making gene therapy possible at the earliest.

Regards,
Namitha
« Last Edit: July 15, 2007, 05:37:43 PM by Andy »
You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.

Max Ehrmann's Desiderata

Re: My horror story
« Reply #8 on: October 08, 2006, 07:50:21 AM »
hi namitha
             
                :hug for u 4 a brave young lady.dont flag but continue to fight.i knw how tiring it is to fight so much from my own experience.words are poor but support is there.dont be careless in future.health is everything.enjoy but keep limits in mind.i hope ur fine nw.

take care. Kafka

 

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