Saturday, July 12, 2008

The dawn that wasn't - Epilogue

How did I get this disease?

Was it due to the vaccines? Many others took them. Was it due to the antibiotics and pain killers I had taken a month or so before I got this? Nothing that dozens others haven't taken in the past.

I had had a disease called ITP (Idiopathic Thrombocytopenia Purpura) in my childhood which was treated successfully with steroids. Could this be linked to the current disease? Possibly.

Medicine has made a lot of progress undoubtedly. But we continue to grapple with the human body and its mysteries. There is still a humongous amount of knowledge that waits to be discovered.

Having a chronic disease is painful. For the body and the mind. Not knowing how and why it struck is more painful. What was the event that triggered this? How I yearn to know this!

I have written this series not because I am depressed or sad. It is just for people who want to know more about the process and events that one has to go through with such a disease.

I have taken this disease head on. Researched the internet. Found out all I could. Talked to the doctors. Talked to the specialists. I think I have done a good job dealing with this disease. I work full time. I work harder than anyone in my family.

I have not let the disease overpower me. I know of people who groan and moan about their condition. I don't. I live my life as fully as possible.

Am I always cheerful? No. With this kind of a problem, it is natural to feel sad or helpless at times.

I ensure that it remains only a part of my life. I ensure that it does not become my life.

28 comments:

Naveen Kolli said...

Kamal,

Hope you remember me (93031) from OUCT'97. Although I did hear a little bit about your health condition that kept you away from coming to US, I wasn't aware of the specifics until I read your blog...

Your story is quite touching and a terrific source of inspiration especially for those who complain about what life hasn't given them. Married to a doctor, I've heard as much medical jargon in casual conversations, but this is the first detailed analysis I heard/learnt from a non-medico. Tell me you didn't secretly attend classes in medical school while you were not at OUCT.

I don't think I can ever comprehend what you went through over the past decade, but based on your battling spirit and hope of near-term medical advancements, I'm sure you will conquer it soon...

More details to follow in an email.

Take care and keep enjoying the life to the fullest ...

Naveen

PDS said...

Kamal

I was amazed to read your blog today (the series) and although I was there I felt my heart pounding while I was reading. I was actually hoping that there was something better that would come up although I know what actually happened. Your account of the entire episode truly is like a movie. I feel extremely angry at the doctors who are all illiterate and egoists. No one really cares.

Why cant there be doctors who go on the net and do some extensive research?
Why cant there be doctors who can consult with the best in the field across the globe?
Why should a doctor ASK A PATIENT which immunosuppresant to take?

Kamal - You brought back those years right in front of my eyes. I feel extremely sorry for you and feel extremely inspired from you. You have taught me a lot over the years on how to live life.

I hope and pray to God to make you alright soon coz you deserve to live life to the fullest.

Santu said...

Kamal,

I have been an avid reader of your blog since I came to know about it quite some months back. And this is the first time, I really understand what you have been through.

I am not here to shower pity, but with the optimist that I am, I am sure, that your victory is not far away.

Your attitude towards all that has happened in the last decade or so, has been a real eye-opener to me.

Loves,
Santu !!

Anonymous said...

I'm just a random reader who accidently bumped into your blog. Your attitude is so inspiring to others. Wish you all the best in your journey!!

Kamal Shah said...

Thanks for your wishes Anonymous!

Anonymous said...

Kamal,

Your blog post is truly inspiring and I am in awe of your attitude. I only wish you wouldn't title it "The dawn that wasn't" for you paved you own way so wonderfully well and are a role-model to others - showing that the future can hold as much promise for you as you want it to.

A stranger wishing you all the very best and lots of smiles.

Kamal Shah said...

Thanks a lot!

I understand your point about the title. However, the dawn I was referring to was the transplant which undoubtedly would have led to much more freedom and a 'normal' life.

Well, I myself have disputed this premise in later posts. But at the time of transplant, that's what I really thought - this was to be the end of all my troubles!

Unfortunately that was not to be!

Anyway, thanks again for your wishes!

Kamal

Anonymous said...

Kamal,
I can't remember how I got to your blog page; but I am glad I did.
The power of the choices we make in how we live our lives is incredible, and your story proves that - again!
Although you did not write much about it, I am sure you must be so proud and thankful of your mom who did not think twice about giving her Kidney away.
I deal with chronic illnesses in my profession. It is physically, and emotionally taxing on both the patient and his/her family.
I hope you continue to post on your blog page.
Good Luck and Thank you.

bhavna said...

Kamal,

I was researching on the net about kidney dialysis and came across your blog. I must say that it is a great effort from your side to blog your story, since it must have inspired a lot of people who are going through the same situation. I started an NGO named Shatayu to create organ donation awareness among the people of India. We are based at Ahmedabad. Currently we are working on the project of adopting 10-15 patients who are on dialysis, to help them bear the costs for the same. As you mentioned, there are lots of people who cannot bear all the expenses related to dialysis. Your story is a true source of inspiration for us also. It is great to know that you face such a grave situation bravely. The founder of our organisation himself is a heart transplant patient. After his heart transplant he decided to start this organisation to spread awareness. Your story was really inspirig.

Take care.

Bhavna

Kamal D Shah said...

Hello Bhavna,

It is really great that your organization is sponsoring 10-15 patients for dialysis. It will be truly a gift of life for them.

Thanks for your comment!

Kamal

vikas said...

Kamal

I can totally and completely relate to you and all that happened to our life when my wife faced a CRF came alive once again in front of my eyes.

We went thru all this agony of Renal Tx (donor again being the all sacrificing mother), post Tx traumas and the impending dilemma of the double edged sword called cyclosporin.

The Tx Kidney had a troubled life since the day of transplant in 2003 and has finally given up now with Cratinine shooting up to 9.7.
All the best care and medication that was availble could not do much and we are back to evaluating Dialysis dependent life.
I have been proposing a second transplant with me being the donor this time.
Feels really cruel to be treated so badly at such a young age and nothing much to look forward to.

Though medical sience has made such great advances we realize that we know only that there is still so much to know about human body.
At young ages of 28 -30 every women desires to be a mother but that pleasure has also gone un realized.

I read on the net some time back that some research is being done on a silicone pouch serving as a kidney(dialyser),
hope that day comes soon when ppl like u and me can be freed of a dilaysis dependent life.

Kamal D Shah said...

Hi Vikas,

Thanks for your comment. Yes, I really hope the wearable artificial kidney will come out soon. But I have been following the news on that front. I would say it will not be available to us in India for a good 10-15 years!

I am hoping the NxStage System One - a portable hemo machine will be available sooner. But my guess is that will also take another 7-10 years atleast.

Thanks
Kamal

Anonymous said...

Kamal,
You gave your blog info on the aHUS interactive website.
Thank you for sharing your story. I have a 10 year old child with Atypical HUS and I don't get this perspective of the illness from him. I also have a sister with the illness but she hasn't maintained your inspiring attitude. You sound like an amazing person and I look forward to the day that you get your functioning kidney transplant. I truly believe it will happen.
Heather Still

Senseshnal said...

Hey Kamal,

This is Senthil from OUCT - hope you remember me. I came across your blog through a couple of contacts on Facebook. Your courage and the fight with your illness are truly inspiring! Good luck - I wish you even more courage and hope that medical advances bring better treatments soon.

Senthil.

Kamal D Shah said...

Hi Senthil,

Of course I remember you! Thanks for your comment!

Great to know about your R2I project! Are you on FB? What's your id? Mine's kamaldshah.

Thanks
Kamal

Chiddu said...

Most vaccines have not been researched for side effects if given in single doses. The combined effects of many of them in a single sitting is not even investigated. Vaccine reactions typically occur one in 10-15 and serious reactions in a smaller fraction. In children , SIDS, autism ,etc are known to be direct causes of vaccines. Unfortunately you will never know if they affect the kidneys but what you know is that each of those vaccines contain toxic compounds that can damage your kidney so don't rule them out.

Kamal D Shah said...

Hi Chiddu,

I subsequently found out that vaccines are a known trigger for HUS, the disease that I have. That information came out recently. However, there is a chance that there is a genetic defect which predisposes me to the disease but yes, the vaccines are a possible trigger.

Ajit said...

Hi Kamal,

I am also a transplant patient. But i have undergone 2 kidney transplants. The first was in 1993 when my dad gave his kidney and the second in 2005 when my wife gave her kidney. I went through what i would call your testimony and it is wonderful. May God bless u . Like u said we need to control the disease and not vice versa. Take Care. Ajit

Kamal D Shah said...

Thanks Ajit! Wish you the best of health and cheer! Take care.

Kamal

Anonymous said...

I too do home dialysis (in Australia) and recently started HDF at home which is considered to be a better form dialysis in removing middle molecules such as amyloid. I have been on dialysis for 28 years with several unsuccessful transplants due to membranous nephropathy re-occurring. I watched your video and certainly many aspects of dialysis are done differently here in Australia with fluid removal much more strictly controlled.If we drink too much, we must wear it till the next dialysis. For me it is not a problem as I dialyse 6 x weekly. I also work as a registered nurse and find looking after others puts perspective on my own life. Your writing was very interesting to a fellow dialysor person. Keep up the good work, good luck and I will be watching out for your blog.

Anonymous said...

Today I read in THE HINDU about nephrologist conference where it was said that india is not having an indigenously manufactured dialysis machine...I was surprised and searched the net when I found your blog...As engineers can we do something about this....

Kamal D Shah said...

Hello Anonymous, Designing a dialysis machine is a very complex process. It can take years of effort and a lot of experts from different fields.

Swapnil said...

Kamal,

I know I am sounding a bit over-the-top and I have no facts to support what I'm saying. But, my instinct says that you are destined to emerge as a winner, this disease cannot defeat you. How you will come out, what will be the process of recovery, I have no idea. It could be another transplant or may be...a new innovation. But one thing I'm sure is that you will overcome this adversity. My instincts have never failed yet, and they will never!!!

Kamal D Shah said...

Swapnil,

Cheers to that!

Kamal

Shree said...

I have spent the last two hours on your blog. You are doing a great service to others by talking about your experience. For I feel the more we share, the more we understand and know our problems.

My husband has been on PD for the last 4 months. He was diagnosed with Chronic Renal Failure eight years ago and managed to survive on 30 per cent functioning kidneys for eight years with a rigorous diet schedule he followed. He had a repeat viral fever attack that led to the discovery of his problem. And it was viral fever again after eight years that signaled the end of the remaining function of his kidneys. He had high blood pressure all these years. We keep wondering how he developed CRF, for he was quite healthy. He did go through a very stressful period on his job front so wonder if that triggered it off.

You have done considerable research on kidney failure, so do add a section on possible causes. Another section on donors would be helpful. How did your mother cope? How is life on one kidney?

I wish you a long and a happy life. And I will keep coming back to read your blog. I have recommended it to my husband. I hope he visits it too and connects with you.

Unknown said...

Kamal... after reading your article "The dawn that wasn't", I felt a lump in my thorat. That meant I am touched to the core. But the way you have tackled this issue, is an inspiration to many. I'll definitely read the other articles written by you. How I found this? I wasresearching for Isotope Bone scan, and god knows how I stumbled upon your blog. I'm leaving for my mom's isotope scan in a few minutes from now. Hopefully the results would be all good. But reading your article I'm feeling much better. Wish you all the best buddy.

Kamal D Shah said...

Thanks Unknown, here's hoping that your mom's scan results come out fine!

Anonymous said...

Hey Kamal,

I do not know how did i read your blog but it was worth reading as this blog is truly inspirational to each of us. I have been depressed with my career , but after reading this it gives me immense amount of strength to fight it out the way you did it. Thanks for posting your story. I wish you all the best & pray for your good health.

Cheers
Jatin