When shit happens..

I’m not sure from where to begin. I might not make sense, but I know I need to write. The past few weeks have been such a roller coaster.  I had mentioned an eye infection in my previous post. Sadly, what we thought was an infection is actually a disease called Uveitis. I ended up having recurrent inflammation in my eyes just as I tried reducing my dosage of the steroid drops. The moment I try to taper my dosage, my problem is back!  I’ve seen several ophthalmologists in this time, and while my diagnosis has been confirmed, the approach to treatment seems to differ slightly. I’m still trying to grapple with what has happened to me and cope with my fears. Before I talk about other things, let me present some fun facts about this disease.

• Uveitis is an auto-immune disease. I think I know enough about ‘auto immune’ problems thanks to Oregano’s kidney failure, which like you can guess was also caused by an auto immune problem. Auto immune disorders occur when your own immune system begins to attack and destroy healthy cells and tissues by MISTAKE because it stupidly believes the tissue is foreign or infected. If I could, I’d scream at my very idiotic immune system and ask it to behave itself. Like seriously dude, can’t you learn to distinguish between good and bad cells? Please stop attacking my eyes for no reason. Leave them alone.
• I have bilateral Uveitis. Which means, it has struck both my eyes. This is bad news.
• I have Anterior Uveitis. Which means, it affects only the front of my eyes. Yet. This is good news. Posterior Uveitis comes with many more complications.
• In about half of the cases, Uveitis is not an isolated disease. It is commonly associated with the presence of a gene called HLA B 27. Diseases that are associated with Uveitis include ankylosing spondylitis, rheumatoid arthritis, Behcet’s disease, sarcoidosis, amongst others. Which means, I have to accept I am vulnerable to a host of nasty illnesses and be very vigilant. Fun, right? As of now I am praying to the Gods that my Uveitis is idiopathic.
• Even the treatment for Uveitis comes with it’s own complications. The first step in treatment is the use of steroid drops that go into the eye. However, constant usage of steroid drops is not a sustainable long term solution. Persistent usage of steroids in the eyes leads to glaucoma and cataracts. As of now, my eyes are heavily dependent on the steroids and I am using them 6 times a day! Have been doing so for the past several weeks. When I tried reducing my dosage earlier, my attack was back with a vengeance and I went back to using the steroids 6 times a day. I am going to start tapering it *very slowly* from next week again and I pray that I don’t get hit by the problem again.
• In some cases, the steroids are unable to control the problem. You then move on to immunosuppressive drugs that have to be taken life long or for years on end before you go into remission. And in some stubborn cases of Uveitis, even these drugs don’t work, in which case you welcome the beautiful methotrexate. Methotrexate is a common drug used in chemotherapy to treat cancers. We all know the side effects chemo drugs come with. I know I am talking about the worst case scenarios, but since I have not been able to break out of the steroid cycle so far, who is to stop my mind from running away to these lousy possibilities.
• Even if you manage to treat one episode of Uveitis., odds of it reoccurring are very high. In most cases, it does reoccur. Sometimes after 2 months. Sometimes after 2 years.
• And finally, the stats that give me sleepless nights. “It has been estimated that uveitis accounts for about 10% of the visual handicaps in the western world and up to 15% of all cases of total blindness in the United States. Legal blindness develops in at least 1 eye in 22% of all uveitis patients and in about 23% of all who require intraocular surgery. Visual acuity (VA) loss to worse than 6/18 in at least 1 eye occurs in 35% of patients with uveitis”

Okay, so now do you hear me say WHAT THE HELL? A QUARTER of the people go blind?? ONE THIRD go partially blind?! Dear Lord, please help me. I know I have been acting like a complete idiot. I’ve been paranoid to the extent of being insane. I always considered myself to be a laid back person when it came to dealing with illnesses that struck me. But I guess it all changes when you consider the possibility of sight loss. I’ve been waking Mint up in the middle of the night and telling him I don’t want to go blind.

My zen and calm statistician husband tells me he doesn’t agree with those stats. He says there are too many variables they may not have accounted for. What was the purpose of the research? What was the sample size? At what stage of the disease did those people get treatment. Etc. Etc. In short, he thinks stats can be twisted to suit your agenda. He thinks I am being silly by worrying about sight loss at this stage. For all we know, I might even be able to wean off the steroids this time (3rd time’s the charm?) and never have to face this nasty problem again.

On the other hand. I may not recover and may be stuck with this dreadful thing for a long time. I mean, I don’t really trust my luck to be honest. This is a rare disease and affects only about 0.38% people in the world. That means the odds of it happening to people are less than 1%. And of course, I had to fall in that 1%. I told Mint I want to scream and say ‘Why me?’. He asked me who the question was directed at. Um. Good question. The truth of the matter is that there is no explanation for such things. The universe is governed by randomness.

Like I have mentioned, this isn’t fun to live with. When my eye is ‘Active’, I hide from all possible sources of light. I feel rather silly to be wearing my sunglasses at home and other closed spaces. I go about telling people I have an eye problem even when they don’t ask. Just because I feel stupid wearing sun glasses in an already dark room and feel like I owe the world an explanation. Using the drops every 2 hours is a pain. There are days when I pray for nightfall because the sunlight during the day is too unbearable. Yes, a lot of vampire jokes have been made by Mint and Oregano.

What lies ahead? Well, I have blood tests lined up for tomorrow. I will have the reports by Monday. I will also step down from using the steroid drops 6 times a day to 4 or 5 times a day from the next week. I hope to be able to taper the steroids every week. If I am unable to wean off without a flare this time, then my ophthalmologist is going to refer me to a rheumatologist and we will consider other oral immunomodulation therapy. I hope I don’t need something strong to shut my immune system up.

Meanwhile, until I know what’s going on on, I repeat to myself. I will be able to wean off the steroids this time.  I will be able to wean off the steroids this time. I will not have a recurrence. I will not have complications. Deep breathe. Repeat.

PS – If you would like to read another patient’s personal account of Uveitis, go here. I could relate to a lot of what has been said there. He/she has really voiced my fears and emotions well.

Hearty read..

WARNING: LONG POST

It all started with me discovering that my heart rate was abnormally high. A normal resting heart beats between 60 to 100 times per minute. My average resting heart rate is 130. This condition is called Tachycardia. I haven’t really experienced breathlessness or any other symptom that typically accompanies the tachycardia. I did feel palpation every now and then. But most of it came when I was anxious, nervous or angry. I figured it was normal. The lack of other symptoms made it easy for me to ignore it all and move on.

I did read up about Tachycardia online, but I still didn’t think I had enough information about it. Is it something that I need to worry about? Does it need to be treated? What are the consequences of having long term Tachycardia? I kept promising myself I would see a cardiologist someday soon, but I never really did

When we were in Chennai this time, we decided to get done with our annual health check up. Because really, the tests were so much cheaper there! So one fine morning, we set out to the lab and got our blood work, chest x-ray and abdominal scans done. It was time for the ECG. As per the usual procedure, I was asked to lie down. The technician went on to attach all the wires onto me.

All of a sudden, I heard her telling me to relax and calm down. This confused me, because until then, I was fairly relaxed and calm. Turns out, the first shot of the ECG showed a very high heart rate and it made the technician believe it was caused by severe panic. I told her I wasn’t panicking at all. She said she would try again. Unfortunately, it showed the same thing a second time.

So instead of proceeding with the test again, she let me be for a few minutes, thinking that would calm me down. As for me, I kept wondering what was going on. She reappeared after 10 minutes and decided to do the final test. That one showed my resting heart rate as 142. The result of the ECG said “Severe tachycardia, otherwise normal ECG”. What does ‘otherwise normal’ mean, I asked? Is it normal or is it not? The technician seemed confused herself and told me it was best if I checked with a cardiologist.

I was not too keen to consult a cardiologist in Chennai. I preferred getting back to Mumbai and doing it. Mint however, seemed to have made up his mind. He was of the opinion that we shouldn’t waste time and that we should get it done in Chennai itself. Also, his dad knew a very senior cardiologist whose opinion is highly valued. So along with all our reports, off we went.

This cardiologist too was quite taken aback by my heart rate. He told me it wasn’t something I could ignore. Having such a high heart rate constantly is bound to wear out the heart too soon. Our first step, he said was to understand the cause. He wanted to know if my thyroid levels were normal. They were. I knew this since I had just done my blood work. So I needed to go through a few more tests.

He said if all those tests were clear and we successfully ruled out all possible ailments, then we would have to attribute it to me being a ‘Type A personality”. I would have to then make some lifestyle changes, learn to be more calm, practice breathing exercises and then reevaluate my condition in a few months. If none of that worked, then I would have to be put on life long drugs to keep the heart rate in control. This, he agreed was the very last option and hopefully we would never have to consider it. In the mean time, he told me it was important to make sure I don’t run.

All of this left me really concerned. In my head, I had expected the cardiologist to tell me all this was nothing. I could ignore it and get on with life. I certainly didn’t expect to be put through more tests. And I never considered the possibility of being put on heart meds! I promised myself I would do all I could to lower the heart rate naturally.

I had been asked to do two tests. The first test was a 2D Echo and a color doppler. Getting this done was fairly simple. This test tests the mechanical functioning of the heart. The second test was 24 hour Holter monitoring. This one got me all nervous. Electrodes attached to wires connecting to a heart monitor would be strapped on to my chest for 24 hours. This would give the doctors an accurate reading of my heart rate for a full day. They would know my heart rate when I am sleeping, when I am screaming (yes, the doc actually said that), or when I am stressed. This would test the electrical functioning of the heart.

Again, I wasn’t too keen on doing the tests in Chennai. But Mint rightly pointed out that I would keep pushing it once I got back to Mumbai. I didn’t want to be wearing the heart monitor in Chennai and Mint too agreed it made more sense to do that in Mumbai. But I did agree to get the echo and the doppler done there. So once again I found myself in a cardiac diagnostic center.

I got to consult another senior cardiologist here. During the Echo, I was trying to come to terms with the idea of having the technicians and docs prod my bare boobs with various scanning devices. Sigh. During one such prodding, the senior doc looked at my heart rate on the screen and asked me why it was so high. I laughed and told him I was waiting for him to tell me that. He told me my Echo looked okay on the whole, so why was the heart rate so high. “Why so much tension, ma? Relax!”. Ah, okay.

I was jubilant though because my echo results were normal. This doctor told me the same thing. To practice breathing exercises, make sure I don’t run or do any cardio work out till my heart rate is in control. I always thought that I SHOULD do cardio to lower my heart rate. And now two senior cardiologists were telling me to not go ahead with it till it was lowered. So how do I lower it? Apparently, the answer is yoga, meditation and no stress.

I had some nagging doubts in my head and decided to consult my gynecologist after I got back to Bombay. She said what I suspected. That she wasn’t entirely sure if it was a good idea for me to go through a pregnancy in future if my heart rate was so high. She did say it would be okay if I took heart meds at that time. Bah, I wasn’t sure I wanted to go through the risk of subjecting my unborn child to such deadly drugs right from the fetal stage. So maybe thinking of having our own child didn’t make sense. Atleast not any time soon. I don’t know why this was even bothering me so much. I wanted to adopt anyway. Why was I now wanting to have a child the moment I was told it would be hard for me to have one?

She could see I was visibly disturbed by all of this. She said we would deal with it when the time came. No point worrying about it now. For now, she suggested I get one more opinion from a cardiologist if I ever wanted to consider a pregnancy. Before letting me go, she decided to take one look at my current heart rate and strapped me to a monitor. This time, I was really panicking. The monitor showed 158! One reading even showed 163. Before I knew it, I had two nurses shaking me and asking me if I could breathe. This made me panic even more and it took me a long time to calm down. I kept telling myself the reading had been so erratic only because I had been panicking.

This has been a very long post, so I am going to share my remaining thoughts later. I am yet to do the Holter monitoring test. That one will give a steady reading for a good 24 hours. I also plan to meet a cardiologist again and figure out my plan. And while I am a little miffed that this is happening to me, I am also so relieved that I don’t have to deal with any major ailment. My echo is normal and that is enough reason to rejoice. The smaller issues, well, I’ll deal with them along the way.