Life with an invisible disease

This is my story.For anyone who needs support or anyone who is compassionate enough to try understand this crazy ride we are on.

12 years ago I was the usual 22 year old. Going to clubs, spending time with my friends and family, going to dinners with friends. Living a normal happy life. Then it all changed. Im going to share my story with you. I don’t want pity. I just want to help anyone out there who needs help.

From a young age I suffered from migraines. The bad kind where your life basically comes to a stop. Visual disturbances, intense nausea and a headache you wouldn’t wish on your worst enemy. Sleep and Nurofen were my best friends. It got so bad that I was getting these attacks almost every day! They ruined family moments that I had waited months for, school days were disturbed. Apart from interfereing with my education it interfered with my moms work day when she had to come fetch me from school. I still suffer these migraines but not as often.

2008 my life changed drastically. I went out to good old Crowded House on the Thursday night. I was not feeling great but hey a night on the town can fix anything… Except your head the next day. I woke up the next day as sick as a dog. Vomiting like no ones business. I didn’t drink THAAAT much to be so violently ill. That was the start of my nightmare….

The vomiting and extreme nausea would not go away. If I ate anything I was sick, I had a sip of water, I was sick. Apart from being so incredibly ill my stomach was swelling. At one point I looked like I was 7 months pregnant. How could I not be eating yet my stomach keeps growing? Something was very wrong.

Three months went by. Numerous tests conducted, ultra sounds done. Nothing. I must mention that during this time I was on “The Pill”. Not for any funny business but to regulate my periods. Many doctors visits and no answers. How devastating for a family literally watching their daughter/sister basically dying, and there is nothing they could do.

After some blood tests came back and showed signs it was my liver taking strain. I was referred to Dr Abrahams aka My Angel from Above. He did an ultrasound and was facinated at my liver. Yes, definately something was off with my liver. He suggested it could be a very rare liver disease called Budd Chiari Syndrome. He couldn’t say for certain as this disease only affected 1 in 2 million people or some figure similar to that. I remember saying to myself that “it would never happen to me” I went home and did what no one should EVER do. I googled this disease. Tears started pouring, my heart beat faster, my hands shaking faster and faster. The prognosis wasn’t good. 5% of people with BCS dont live longer then 5 years. I went into full blown panic mode. Was I dying? I called my mom in a state. She managed to calm me down and reminded me it was so rare the chances were very low that I would have this disease.

I was referred to a liver specialist in Durban. He checked my file and confirmed NOT BUDD CHIARI SYNDROME. I can carry on taking the pill and free to fly, as I was due to fly to Cape Town the next week for a long awaited visit to my sister and cousins. Relief.

During my stay in Cape Town I still felt terrible. Massive stomach and constant nausea. I started doubting this doctor. Something was still wrong.

On arriving back to Durban airport and getting ready for my drive home to Pietermaritzburg, my stomach was hurting. Not a cramp but a pain I cant really explain. The next day my mom booked me to go back to Kaufmann &Partners to see Dr Abrahams. Unfortunately he was off this day so was booked to see another doctor. Again, this doctor said no worries. Was I now becoming a hypochondriac?

A few days later Dr Abrahams contacted my mom. He was back and was interested in my illness. He called me back and then did a tummy tap (when they insert a massive needle straight into my stomach and take the fluid out to test) This was so traumatic and painful. My mom held my hand and cried with me. He then also sent me for CT scans to see what he could find.

Three weeks later we went to Botha House for my uncle Tony’s 60th Birthday party. Everyone was there. I stayed a while down stairs then decided to go lie down. I was feeling really bad. My skin had started turning yellow. Family members were coming to the room to literally say their goodbyes to me. Obviously I didnt know that at the time. Luckily for me, my 3rd cousin (My dads first cousin) Andrew knew a pathologist in Pietermaritzburg and contacted him urgently on Monday morning. He knew a liver specialist in Cape Town who he sent the results too.

CONFIRMED Budd Chiari Syndrome. My heart sank. I could feel the mood in the room instantly drop. I can’t remember what was said but my whole family and I were in tears. I was now a statistic.

Dr Abrahams was right. The one doctor who I prayed so hard that he was incorrect was indeed correct. I can’t remember who got the details for Professor Wendy Spearman in Cape Town. She heads up the liver department at Groote Schuur Hospital. World known for her knowledge of the liver and all its diseases. I knew I was in the right hands with Dr Abrahams and now Prof Spearman. I had a fighting chance.

When you book to see Professor Spearman there is no set time. She is situated at the Government side of Groote Schuur. Our first time there my mom and I got lost in the hospital but everyone was friendly and we eventually found the liver clinic. After waiting for a while we finally got to meet Prof. A normal lady with a heart so big. She immediatly sent me to the wards to get more tests done. My worst test was the oxygen in my blood. This test they took blood from an artery in my wrist. Painful does not discribe the pain I went through. All doctors and nurses were pleasant and helpful. I was booked in for what we thought was 10 days to two weeks! Luckily we managed to organise with Prof that we weren’t staying too far away and could come to the hospital everyday by 6am. Im not one to complain but a mixed ward with male and female patients made me feel a bit uncomfortable to be honest, and when you sick you only want your momma, don’t you?

After my time there we went back home to Pietermaritzburg. Rest was needed. I had been put on mulitple medications to thin my blood and get rid of the ascites that was in my abdomen. Prof also mentioned that there would be no reason why I couldn’t live longer then 5 years as we had found the problem in the nick of time and if I took my medication correctly. Some more hope in a dark time.

I had to go for blood test a few times a month to make sure the medication was working and to get this disease under control. What I found particularly interesting is that there are many causes for BCS. The one is the pill. Remember the one Doctor mentioned I could stay on the pill and fly? For those of you who are not sure BCS is a clot in your hepatic vein or Deep Vein Thrombosis. It is highly dangerous to fly with a DVT.

Jump ahead 3 years I married a guy who I thought was “The ONE” we decided to think about having babies. I have always ever wanted to be a mom. Children were always in my future plans. Unfortunately, due to the severity of my BCS children are a no no. I would have a 5% chance of survival if I fell pregnant. Was it worth the risk? At the young age of 24 I went for a tubal ligation. This is when they ties your tubes. An intense depression filled my life. My biggest wish and dream was no longer an option. I started questioning God. “Why me?” “If you really loved me why take away something so special and important to me?” Unfortunately, The One turned out not to be The One and we parted ways. Thats a story for another day.

A few years later I was diagnosed with Graves Disease. This is when your Thyroid is either under active or over active. The case for me is it was over active. I could eat all day and loose kg’s daily. Sounds great but my hormones were a little out of whack. I have never been a bitchy person but during that period of my life I was not a nice person. Especially to my family. I did things irrationally and did not think about the consequences. I knew I was hurting my family but I couldn’t control it. Once I had said something horrible I would burst out crying because I was just so mean. I belonged in a psychiatric ward somewhere far away. Due to my BCS options were limited to dealing with this crazy thyroid. Eventually we all agreed on radioactive iodine. Basically radiation. This ontop of my liver made me feel absolutely terrible. I could not go close to anyone, my throat burnt and once again, I was miserable.

Now 12 years later I am happy. My life is under control again and I can live my life once again. Obviously there are limits but I am Alive! I am now happily married to Warren. He has 2 boys from his first marriage. Tayne and Landon. To me this is the closest I will get to being a mom. To be honest, I love them as if they were my own.

Thank you for reading my story. It is hard having a disease that no one knows you have or understands. They call you lazy because you can’t get up and be active or clean the house or you constantly grumpy or feel terrible. Don’t worry you are not alone.You will get through this.

Side note: This is my story. Not all stories are the same. Support and try and understand anyone in this situation.

I would like to thank Dr Abrahams and Professor Spearman for saving me and not giving up the fight to get me here. Mom, Dad and Nick, thank you for loving me unconditionally and even when you can’t see it, help me when I am feeling down and out. Thank you for missing work and paying for the numerous flights to Cape Town and back. Spending money we didn’t really have. Lastly to my Wa. I love you and the boys more then you will ever know. You guys made me a mom.. You made my wish come true.