A dash of Pepper…

…with a splash of Mint

Of dilemmas and guilt

Posted by Pepper on August 13, 2013

We already knew about Oregano’s condition. The biopsy reports only confirmed all that we knew. I’ll admit it, despite the earlier reports, I secretly hoped the diagnosis was incorrect. That the biopsy would say that the kidneys had no permanent damage. That we would manage to get through by regulating his lifestyle. Unfortunately, that is not how it turned out. With racing heartbeats when we entered the doctor’s cabin, this is what we were told.

– Oregano’s condition is called IgA Nephropathy.
– He has lost 80% of his kidney function. What remains is approximately 20% function.
– This is chronic. The damage cannot be reversed. Neither can it be stopped.
– They have no particular treatment for this. Other than giving him medication to control his BP, and closely monitoring his diet, they can do nothing.
– Once the kidney function is reduced to 10%, he will have to be put on dialysis, or consider a transplant.
– They cannot predict how slowly or quickly the deterioration will take place. They have given us a vague window of between ‘1 and x’ years. The approximate value of x is 5.

We took multiple opinions, hoping to hear something different. Hoping to be told his condition wasn’t as bad as the other doctors made it out to be, that we could restore his lost kidney function. None of that happened. Every doctor told us the same thing. Hearing all of this really crushed a part of my heart.

Yes, I know this is not the end of the world. With changes in his lifestyle, he can delay the impending damage. Ultimately, we can get a transplant and hope things turn out alright. But how easy is it to implement those changes in your life? He has been asked to eat only hot, home cooked meals. No eating out. Ever. He has to limit his protein intake by a huge extent. He has to give up a gazillion other things that are a part of his everyday diet. He has to consume, what seems like a 100 tablets in a day. He needs to get blood and urine tests done every few days/weeks.

For a 24 year old, that kind of life does not seem fair. Eating out is not only about sampling different food, it is about socialising with your pals. It is about catching up over a meal after a long time. Sharing a beer with friends is not only about the experience of drinking, it is about bonding with buddies, loud boisterous talk, and much more. At this age, giving up all of that, forever staying home, eating oil free and low salt food, measuring grams of protein and counting your tablets when all your friends are out there having a good time is just unfair. But then, who said life is fair? I only hope experiencing this life makes him a person of strong will.

Should he go to the US for his studies now or not? That has been our biggest dilemma. Half of the doctors we met told us he could go ahead. The other half said it was not advisable. ‘MS in Game Development’, the course he is scheduled to do is a highly specialised one that comes with no scholarship. The degree comes at a high cost. He has taken a big loan. As per the original plan, he was to complete his Masters program and then work in the US. For a few years, atleast.

Now that he has been diagnosed with this condition, we don’t know what to do. Especially when the doctors have given us a window of ‘1 to x’ years for him to need dialysis or a transplant. So, what if his condition deteriorates in the midst of, or right after this course and he needs a transplant for which he has to come back to India. He may not get a chance to return or work in the US, given these varied visa regulations. Then how will we service the loan? On the other hand, what if this ‘x’ seems to be far way off? Why should he not go for his studies now and continue living a normal life?

Moreover, if he does go, the insurance will not bear the cost of any pre-exising disease. So the expense of all the blood tests, check ups and treatment has to be borne by us. Despite having lived in the US for a considerable amount of time, Mint and I don’t know clearly the exact cost of these things. Other than that, will he able to restrict his diet as a student? Students are known to switch to cheap and convenient methods of cooking, like using canned tomatoes, eating instant food, etc. He won’t have the luxury of doing that. He can’t share a meal with his roommates. He has to cook for himself, every single meal. With his hectic schedule, we are unsure he will be able to manage doing all of that.. As unsure as he is.

While we are in the midst of this ongoing dilemma, my mother in law has been on a self guilt trip. Since the doctors have been unable to point to any one particular cause, she has been over analysing everything that occurred in the past. How did this happen to him? She says maybe she should never have allowed him to eat in the college canteen. Maybe this happened because she threw up through out the 9 months that she was carrying him, so it may have caused some damage to the kidneys? What?! “Stop blaming yourself, ma!”, I tell her. But who am I kidding? I know this is all that runs through her mind, causing those sleepless nights.

Lastly, this whole experience has reinforced one important fact – Anything can happen to anyone, irrespective of age, genetics, medical history and seemingly good health. I can’t emphasize this enough. It comes to us as a shock when things happen to us or our dear ones, and yet, we forget this important fact and take our bodies for granted when all seems well. All of us should, and *must* do a master health check up every single year. Because diseases and ailments crop up silently and wreck havoc within our bodies and only exhibit themselves externally once it is too late. As I type this, I realise Mint and I haven’t had a complete health check up done in years. We plan to get an appointment soon. My plea to you is to do the same, if you haven’t gotten yourself thoroughly tested in the past year.

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40 Responses to “Of dilemmas and guilt”

  1. R's Mom said

    Darn! Thats truely unfair…More than anything the whole dilemma of whether or not to go to the USA 😦 I wish I could tell you that everything will be fine, that sounds really shallow! I only can tell you that I will definitely pray hard to God, to help you guys overcome this situation…hugs to the whole PepperMint family…

    and yes, we do take our bodies for granted..doing an annual check up doesnt take time, we have just been postponing it forever…this post is an eye opener for me..

    Hugs hugs and more hugs

  2. Anna said

    My heart goes out reading this!! I hope God showers all his blessings and give strength to 24 yrs old Oregano who has to bear all this and leave behind so many things in his life. Also, you all are big support for him right now..so be strong..no matter how weak you may be from inside. No one can see a loved one going through all this!
    God Bless!

  3. Richa said

    Its awful. I’ll say my prayers today and ask for strength for Oregano to cope up with all this.

    Hugs.

    I got reminded of my mother..who is on a strict liquid diet ever since this (http://clouds-rain-and-sunshine.blogspot.ae/2013/06/the-distance-between-dubai-and-delhi-ii.html) happpened.

  4. Sunil said

    Hope for the best to happen. Our prayers always with you

  5. Smita said

    *hugs*

    I know what you are saying!!! My MIL still goes into these guilt trips!!! “She didn’t take his proper care or she didn’t pay attention twoards her sons after they moved out etc” and then she takes a 360 degree turn blaming my BIL for his condition, “he spoiled his own body/ had he taken his care this wouldn’t have happened etc etc”. There is no end to this story!!! We listen to her and then finally scold her that all this is not gonna change the situation. What has happened has happened all we can do now is to improve the situation. When he was diagnosed 2 years back we were also given similar window thankfully things have been in control. If you ask me ur BIL shouldn’t go abroad because right now he needs to lead a discipline life….if it can be postponed for some time I feel it wud be better for his future! But that is my personal opinion!! 🙂

    And what u have written about health check up is bang on.

  6. PeeVee™ said

    Sending hugs and hope your way.
    And lots of prayers Oregano’s way.

    I wish I could do more:|

  7. Oh! Such a sad thing to happen to anyone, specially someone so young and bright! Good Luck, Pepper! A silent prayer and loads of strength for the family is all I wish for!! Take care

  8. Pratiksha said

    Sorry to hear about Oregano Pepper… your thoughts and analysis of his current n coming conditions are justified.. It would be better if he stays back.. (truly a personal opinion).

  9. Ohhh Gosh ! I can feel the scare running in my spines as i read your words – Pepper !

    I can empathise with what the family must be going through – perfectly understand your MIL’s feelings.

    My prayers and more prayers – Pepper !

  10. Deepa said

    OMG!! I am so sorry pepper. I don’t know what to say. My prayers are with you and your family.

  11. Snow said

    May God bless him with courage and determination. Take care!

  12. I was shocked on reading this. My sincere prayers to you and your family that this nightmare ends soon.

  13. Ashwathy said

    For the first time in my life, I am thanking my dad for making me undergo an exec checkup at age 23. He did it once before I went abroad for studies and once after I returned. And even the hospital nurses were asking me why I came at that age. Of course I found out had nothing majorly wrong with me, except that my lungs were slightly weak from the childhood asthma that I had. Nothing earth shattering. Thankfully.
    I was asking my dad why he was being paranoid about my health. (He always has been, since I was a premature baby.)

    Now I retract all that I said. Life is so unpredictable isn’t it?

    Will msg you directly on the other stuff. Nothing more to say on your blog.

    • Pepper said

      That’s the thing, Oregano has done these exec check ups too! Last one was in 2008. 5 years ago. That time, most people wondered why he needed it, so post that, he hasn’t done one. Now I wish he had. If I may ask, when was the last time you got a check up done? We need to do one every year.

  14. Jazz said

    It is indeed alarming Pepper.. Hugs and Prayers for Oregano.. And you are so right about the yearly master check ups.. Been a really long time, will get it done soon.., Take good care..

  15. MR said

    I’m sure you’re upto date on this horrible disease, but my 2 cents, i have a close friend who has this, he’s was diagnosed in college and yes it’s progressing steadily or rather deteriorating steadily, he will need a transplant in 2 yrs or so is the latest.
    he does take care with food, but there is no special diet which will cure, he is careful about proteins and is watchful of what he eats, he also has regular health checks every quarter.

    but it has not stopped him form living normally ( to a large extent), he exercises regularly, eats well and yes has an occasional wine.

    Financial issues are dependent on a family but my friend did come to the US for his masters , he worked here for around 5 yrs , and is now in s’pore. working . he felt treatment was better in the west. again his opinion. he s soon leaving to europe on a new assignment. however he has categorically refused to be married. he does have a girlfriend and they live together. so i dont know if this info is any good to you, but as far as i can tell my friend lives his life normally albeit with a sword hanging over his head, he always jokes when he sees me that it’s his life but i bear the fear so he has no fear.

    it was an incredib;y hard experience but you will all prevail just like we all did.

    • Pepper said

      That’s right MR. No diet will cure. He’s only been prescribed such a strict diet to reduce the rate of damage. As per what the doc says, that plays a critical role.

      I do agree with you. Treatment is better in the west, most times atleast. Finances are a different issue though.

      Was happy to read about your friend. Stories like his give us hope. Thank you.

  16. I was secretly hoping some miracle with biopsy reports, I am feeling so sorry to hear otherwise. Life is so unpredictable , I pray and hope you all get enough strength to live through this tough phase of life. Hugs!!

  17. hey Pepper, I wish you and ur family well for going through such times. It’s tough at such a young age to foresake lil pleasures of life. However, does he has no right to pursue his dreams despite the illnesses. I dunno and not in place of ur family but I feel he deserves happiness. My wishes to the young man:)

  18. Wellwisher said

    My advice to everyone would be “Stop drinking, Stop smoking”

  19. bhavanahr said

    Hi pepper, I am so sorry about oregano. Believe me I know what you are going through. To watch a family member go through such pain and being bereft of all pleasures is the worse. My dad had it. By the time the diagnosis was made its was too late and he was immediately put on dialysis thrice a week. No salt, liquid intake had to be not more than 1000ml for the whole day… Heart used to wrench as we said no when he felt thirsty and asked for water. Mom started eating the same food as she didn’t want him to feel bad and that whole year we never went to a resturant . We lost him a yr after the diagnosis. I feel my dad gave up on himself. Oregano is young. Please let him never ever feel defeated. That is most important. The day you first wrote about oregano was the day my mom in law was diagnosed of diabetes nephropathy. And i have a brother of te same age who is passionate about gaming. So all this has hit home to me like nothing else. Also, I am in US currently. Without insurance it’s sooo exorbitant here.. Despite having one, I had to shell out $500 last week from my side for a simple ultrasound , blood test and an appointment with a nurse practitioner. My husband friend’s father had a cardiac arrest during his visit to US and was treated. He had no insurance. So the bill came up to $300,000. I don’t mean to scare you but that is a lot of money especially if you are coming on student loan. So take the decision after considering all these things. Try and check if something in the same line is available in Singapore. That way he is closer home too .

    • Pepper said

      Bhavna, so sorry to hear about your father. Yes, I’ve experienced the heart wrenching feeling of denying water to a patient who is already suffering. My uncle went through all of that. I think I’ve made a brief mention of that in this post too https://pepperedthoughts.wordpress.com/2011/08/14/the-end-of-an-era/

      You’re right. We keep asking Oregano to not give up. To keep the battle going. As of now, he seems strong, but then it is too soon to speak. I know we have a long way ahead.

      God, those costs make my head dizzy. It is such a complex decision.

  20. Prayers for O. This is indeed a difficult time. I hope this gets better.
    I was wondering how about the med insurance from school? If it helps, i am in So Cal and can try finding out more about the costs and all.

  21. Hi Pepper,

    I have been reading your blog for quite sometime but have never commented. I could not resist commenting after reading about Oregano’s health. My FIL was diagonized with renal failure and on regular dialysis now. During that time, i did lot of research on internet regarding this. I bumped across Kamal’s blog.It is very similar to Oregano’s issue as in, he was diagonized with renal failure just before leaving to the US to do his Masters.

    Unfortunately, he couldnt pursue his dream of going to the USA. Nevertheless, he is a very strong person with good attitude towards life.He leads a normal life, works for an MNC and does dialysis on his own at home.

    You can read him here: http://www.kamaldshah.com

    He has done lot of research on this issue and also works for nephoplus in Hyderabad.You could talk to him and get some insight about this.

    Again, I have never commented on his blog too so he may not know me but I felt this piece of information will definitely help you guys.Hence shared his website with you.

    I really hope you guys come over this soon.

    • Pepper said

      Abhiyumnaanum, thank you so much for that link. I see a lot of useful information there, drawn from personal experiences. In all honesty though, reading about it also scares the hell out of me. It tells me how very painful and unpredictable this journey is. 😦

  22. So sorry to hear about your brother in law. Hope you and your family, especially your in-laws find the strength and the fortitude to wade through this. Sending good, healthful wishes….

  23. Preethi said

    Oh God, I feel so bad just reading about Oregano’s condition. I can imagine how hard it can be for you facing this situation. It is indeed an eye opener for all of us. We all need to get our health check ups done regularly. My in-laws who are in their late 50’s refuse to get their check up done.
    I understand it is going to be really difficult for Oregano to maintain a strict diet regime if he decides to do his Masters in US. I hope you all find the strength and courage to handle this problem and I really wish Oregano and a bright and happy future. Take care.

  24. K said

    Hope Oregano recovers soon.. Regarding pursuing MS, he can always write to the university & ask to defer his joining date by one year which might give him time to recover reasonably well & also take the right decision next year than hurrying now.. I know friends who have done this & their requests have been accepted by the university.

    • Pepper said

      Yep, he has deferred for now.We always had that option, but weren’t too keen to take it. Waiting for another year before he embarks upon his journey may complicate everything and mess up with the time frames we have in mind. But we did realise we didn’t have another option. So just hope he gets to go next year atleast.

  25. chandni said

    I have been reading every post on oregano and felt my heart sink as I read about the family crisis. I can’t even imagine how much he is going through, not to mention all of you. Don’t really know what to say to comfort you pepper, but I hope against hope for a miracle. I really do. Stay together, stay strong.

  26. Pari said

    You all would be in my prayers Pepper. Health is the most unpredictable things of all..my sister’s FIL underwent a transplant recently, and is doing pretty well. The time frame between his diagnosis and transplant was around 2 years. However, those two years were pretty tough for him. Keeping a track of food, fluid and medicines is troublesome. With age on his side, I believe Oregano will be able to lead a normal life. Lots of good wishes and hugs!

  27. Jack Point said

    Been very busy, just came across this. Hope things turn out well,

  28. Taa's mom said

    http://www.indiathewonderland.com/2011/08/wonder-doctor.html

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