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!
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.
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.
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!