I’ve got MG – and it’s not a sports car ! (part 2)

Surgery and Relapse:

I was scheduled to have surgery at St. Anthony’s Hospital on the 19th of August 2003. At this point I have learned to accept my fate. Grief they say goes thru 5 stages: denial, anger, bargaining, depression, and acceptance. I believe this also applies to people confronted with something traumatic. I certainly went thru the first 4 all at the same time. When I realised the operation is something really necessary then I began to relax and accept the fact that it is in my best interest to do this. Now I truly know what Christians say as “leaving it up to God”. I cannot do anything else, I prepared myself physically, mentally, emotionally. I prepared my family for whatever is inevitable. I have complete confidence in my doctors. Everything else is up to God. I have a very strong gut feel at the time that if I chose to I have a chance to “exit” this world during operation. But I love my husband and my children and I don’t want them to grow up not knowing me. So I prayed that whatever God chooses I will abide for I know it is for the best but if He asks me, I choose to live.

I was prepped for the operation at 8:30 AM. No breakfast, just a tiny sip of water. They transferred me from my bed to a bed trolley by pumping an inflatable bed underneath me then sliding me over to the other one (that was fun!). I was wheeled in the operating prep room and given an anesthetic which within less than a minute knocked me out completely. So I have no recollection whatsoever of their cutting and embroidering my chest.

I woke up in the ICU unit with my husband by my side. He said the doctor told him it was successful. Hooray ! Only thing he regretted he said was ‘why didn’t they put silicones on both sides while they were at it’! The cheek! Sira ulo talaga. Don’t worry nabatukan ko na siya (I gave him a good smacking on the head). It was succesful I had no complications and the good news is that the more than 2-inches in diameter tumor they took out was benign. But my goodness, after the operation it was so *bloody painful* !! Konting galaw ko lang – aray! (It was so painful everytime I move). The breathing tubes they put in me caused me to produce sputum (plema) which means I cough no matter how hard I tried not to. Coughing means sudden expansion of your chest. This caused me the most pain. Laughing also does this but I would prefer the latter than the former. I got a foot long scar on my chest and three small ones at the bottom where drains were connected. These drains were so *%^&$@#! painful when they were removed. And they have to do it one at a time so the pain was times 3 ! I sure am glad I’m over that. The field of medicine is really making big strides on this type of operation. Years ago this is a big deal but now it is quite routine and they have very high success rate. Also one nice thing in the hospital is that most of my nurses were Pinays kaya okay na okay. I always have someone to chat with and they’re extra caring to me.

I was quite sensitive to the anesthesia so for several days I was nauseaus and dizzy. I stayed for 1 week in the hospital and in that time I could see a big difference in my eyes and speech. My eyes which were always droopy before were back to normal and I was chatting away in record speed. Despite the pains I had a nice time there. I was well taken cared of by the doctors and staff.

I got back home to recuperate where I was worried because my youngest is only 2 ½ at the time and sometimes she still wants to be carried which I definitely cannot do. It’s a good thing my sister from Florida came to care for me for a month. She was a real big help for me and my family. My MG was not recurring yet big time but I could feel it as my wound was healing it was coming back. My wound was fine except it has keloid. Not a pretty sight. I was half expecting this because it runs in my mother’s family. It can be a problem when I shop for clothes I can’t wear v-necked or plunging necklines anymore (as if I have something to ‘show’).

Then I had major relapse, I accompanied my sister a week before she was due to leave to Harrods and central London to do some shopping. When we got home I felt so incredibly tired and sleepy. By the next day I couldn’t focus my eyes and was so blurred that when I drive I just guess (tinatantiya) on how far I am from the pavement, cars in front, etc. This was very dangerous don’t try that at home folks. I couldn’t do much around the house. I would start something after a few minutes I would be very dizzy or have a headache from the dizziness. I couldn’t read, I couldn’t watch TV, I couldn’t smile very well. Eating was a problem as I can’t chew well and would choke easily (but in a way it helped me lose weight). I was so depressed because after the surgery I thought I was completely cured. Even before the surgery my MG was not as bad as this. No wonder back then when I was telling my doctor about the wonderful improvements I had after the operation he just smiled and said “We’ll see.” The removal of the thymus gland and the tumor, it turned out, have more of a long term effect so you cannot observe immediate sustained benefits from it. I theorised that other members of my immune system simply took over once they realised that my thymus gland is gone and carried on producing too much antibodies. I was deteriorating rapidly that the Mestinon tablets I was taking has no effect anymore. I was then put on a course of steroids (Prednisolone) and Azathioprine. Even that did not take effect immediately. It took probably 2 months before I got reasonable benefit out of it.

These were dark times. I tried to start work again in early November 2003 but I couldn’t really hack it. I couldn’t go on meetings I would be very embarassed because of my slurred speech, I couldn’t stare long enough on the computer monitor. I had to take another month off which my manager kindly gave me. I was off work for about 4 months in total and I am very grateful that my company gave me full pay throughout. I did not pay a pence for my operation and treatments because of the private medical insurance my company provided – for that I am very grateful as well. Even the huge number of drugs I take are all free. The NHS issued me a medical exception card. They give this to people whose condition is chronic. I realised that if this happened to me while I was in the Philippines, either I could have died from not being able to afford treatments or could be drowning in debt. God is still looking after me.

The steroids as anticipated made me always thirsty, moon faced, and bloated making me look like the twin sister of the Michelin Man. But it did make me feel good. I felt like superwoman that I could do anything. I was super sipag (hard-working) around the house. I am currently gradually being weaned off it and I hope to complete it in good time. There are a lot of side effects from it, besides the ones I mentioned it also raised my blood sugar. I have to be careful of what I eat and was even advised to diet which is very very hard to do when you are on steroids. By January 2005 I hope I will be only on 5mg of the corticosteroids and am looking forward to having my MG remain in remission.

My current medications are (as of Sept 2004): Thyroxine 100mcg, Mestinon 30mg (2x/day), Prednisolone (7.5mg/12.5mg alternate days), Azathioprine 50mg (3x/day), Fosamax 70mg(1x/week). I was advised to continue with my current level of Prednisolone for 3 months then reduce it by 2.5mg and do this for another 3 months.

I am currently on remission and hope to continue being so. I realised I have a lot to be thankful for but mostly for the love and support that my family and friends have given me. There’s no way that surgery will not be successful I’ve got an army of friends and relatives praying for me! I thank God for looking after me and giving me another chance. I thank God that my body decided to get well and I hope I can take good care of it and give me more years of service. Despite everything and all the problems that I had - life is worth living. Thank you everyone and God bless.