by Bonnie Buckley
July 4, 2007
The day started out like any other day but wow would it ever end with a bang . When I woke up for work Charlie (hubby) was gone to work hours earlier and I went to shower and get our daughter Kayla up for highschool.Something we did on a regular daily basis. I came out of the shower and noticed Charlie was back home in bed and looked horrible sick. I got him some meds and gingerale and headed to drop Kayla at school and me at work. Kayla called me at work around 2pm when she got home from school and said her dad was terribly sick with severe stomach pains and vomiting and looked a yellowy color.This seemed to come out of nowhere but as I look back he hadn’t been well for a very long time but he wasn’t a complainer and never ever took time off work He never was sick or at least never said when he was so this was scary different. As he seldom got sick or attended an emergency department an alarm bell sounded when Kayla asked him if he would go to our local hospital to be checked out and he said yes . It was July … who has the flu in July ???? I left work early and met them at the emerg where the doc was amazing and was doing a whole slew of testing on him.One of the tests was for hepatitis C . The doc asked if he was high risk and as he had never been an IV drug user or had a blood transfusion, etc, etc, we said no but lets do the test anyway to rule this out. So we wait ……….
The doc finally came in and said Charlies blood work was not good, his liver numbers were way high and his spleen was huge and swollen very bad and other blood work was way off normal limits The doc said his assumption at that point was Leukemia or liver failure. Wow what a choice !!!! Now it was all starting to make sense …. The decade of leg muscle cramps, the headaches, the tiredness constantly, the memory issues, he couldn’t have more than 1 beer and he would be slurring his words and staggering all over the place. I always thought he was lying to me when he would say he had only had a beer or 2 at most. He had been to the family doc a few times with these complaints, not all at once but he had been there asking about the issues periodically , only to be told to drink more milk for the cramps, get more sleep for the tiredness, forgetfulness and he was under too much stress which causes headaches. Not once did she do any blood work on him !!!!! It was one of the worst nights of my life ( or at that time I thought it was but I sure didn’t forsee the nights of the future). He was referred to an internist here in Guelph the next day and I was not happy with the investigation plan so I made us an appointment with the family doctor and demanded he be sent to a large city center hospital familiar with liver issues. At this time we still didn’t know the results of the hep c test and really gave it no further thought. As we waited for the referral appointment notice to come I searched up everything I could on liver disease and leukemia. Scary stuff I remember thinking , and a lot of talk of hep c …. Hmmmmm ….. I wondered . The tests finally came back and it wasn’t leukemia but it was late stage cirrhosis of the liver and the hep c test came back positive !!!! We were shocked , what did this all mean anyway???? Well he had genotype 3b hepatitis c and now it was time to digest all this life changing information and that was a huge task. Where the heck did he get hep c from and why the heck did the family doc not diagnose this decades earlier when he had all these vague symptoms. A blood test panel would have possibly caught the wacky numbers . But we had to go forward and to play the blame game wasn’t productive as we were fighting for his life which was far more urgent. Our appointment for Charlie at London Health Sciences Hospital in London Ontario was booked for only a couple of months down the road and that was a short wait considering the wait to go see a specialist in Ontario is dismal . He was put on Furosimide for the ascites and he had to have 2 litres of fluid drained from his stomach as well . He was put on a low sodium diet to help as well with the swellings and we waited ….. It was the end of August 2007 when we first went to London to the hepatologists. He was scheduled for numerous blood tests, and ultrasound, a CT scan and was put on new medicines . They asked about the risk factors for the hep c and honestly we weren’t sure how he contracted it but I did get a feeling that they thought we were just neglecting to disclose some of his drug using past , which there was definitely some marijuana use on a regular basis but never anything snorted or injected. He had 2 tattoos that had been done in the basement of a work buddies house that were suspect but for me it didn’t matter how or where he contracted hep c …. He had it and no one deserves the suffering or stigma associated with hep c. It was a wait and see and monitor the situation approach that the docs in London decided to take. No treatment for hep c until they saw if they could stop the progression or at least slow down the liver decline. As a wife and caregiver it was heartbreaking and scary to be going through this. I watched my mother take care of my father my entire childhood as he suffered from a rare blood disorder that eventually took his life and I saw and felt the heartache and agony and here I was experiencing it all over again as a wife this time. It was awful watching such a strong, happy, wonderful man deteriorate before my eyes. I had 3 children when I first met Charlie back in 1984 and he was my friend at first , but we fell in love and I do believe we are soulmates. He adopted my 3 children as we had been abandoned by my ex husband the year prior and then we married and had our baby girl together in 1989. Life was good back then and now we were faced with this !!!
As the months passed by Charlie became weaker and sicker and spent a lot of time in bed and his memory was fading fast. I would have to explain simple things to him time and time again and it was sad and frustrating at the same time. I felt so bad for being snappy with him sometimes but he was frustrating and I have never been a very patient person. I loved him so much and it drove me crazy to see him wasting away.As his body was filling with toxins it was almost impossible to sleep in the same room with him. The odor coming from his skin was really bad and some nights I would have to sleep at the end of the bed so my head was near the open window. I felt so bad . He would sometimes say to me “do I smell that bad again?” I would tell a fib and say no he didn’t smell that bad it was just me having a hard time sleeping that night. The feelings of defeat, heartache, fear, lonliness and anger were overwhelming and I sometimes wish I would just go to sleep and never wake up, it would be easier I would tell myself, the hurt would go away finally. But then out of nowhere I would gather strength and determination to go on another day and fight with all I had to make someone help him. He couldn’t die on me I kept thinking, he cant leave me here alone. Someone must be able to fix him, this isn’t fair and Im not accepting this . His liver was failing and he was now in end stage cirrhosis of the liver by Feb of 2008 and the docs in London decided that he needed to go for a liver transplant assessment to see if he would be able to tolerate hep c treatment or if he should be placed on the transplant list right away. So we were sent home to wait for the call that would book the 4 days of ultrasounds, blood tests, CT scans, counselling appointments and psychiatric appointments. Life was hard for all of us while we waited for answers and a concrete plan , all the while watching him slip away bit by bit and helpless to do anything to make him better. This was so unfair I kept telling myself , this is nonsense, how can he be so sick , so fast at 46 years old !!!! Soon hopefully we would be London bound for the 4 day assessment and hopefully have a plan in place to make this better , at least that’s what I thought ……… The journey through the transplant assessment and ups and downs and the outcome of the process is coming up shortly … stay tuned and thanks for visiting .
Bonnie Buckley
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