Wednesday, 13 February 2013

Laying it all out...

I am really thinking a lot about my life at the moment. Where I want to go, what I want to do. Obviously there are some things that will remain unchanged. There is Nick, my amazing partner of 6 years, I would not change him. There is Sophia, my beautiful 14 month old girl, I couldn't or wouldn't want to live without her. I feel like 2012 was such a horror year, I mean truly terrible. I am pretty sure I went into a state of depression. 

I was going to keep my blog a happy place and free of this, but I feel like this is a place to express myself and I am not truly expressing myself when I leave a huge chunk of it out. In 2011 we found out that Nick had a kidney disease, we were told that he would eventually need a kidney transplant but this was not going to happen for around 20 years as it was a very slow moving disease. This was a huge blow, Nick got really sad about it. He was supposed to be doing his masters that year but never really got onto it. I thought it was just a state of depression and I tried to motivate him. He always seemed tired and down and wanted to spend a lot of time sleeping, he was also putting on a lot of weight. His family and I worried about him, he seemed so down. 

When Sophia was born he had a hospital appointment to check up on him, it seemed to go ok as usual and they changed some medications.  We carried on with our plans of moving to Nicks new job. We had Christmas and New Year with our families and then Nick set off to find a house in our new city. We moved up in the beginning of February 2012. We had our wee family and it was exciting to be in a new city. Nick had another hospital appointment not long after we moved here, we thought it was a meet and greet. It wasn't. I forget exactly what happened here, it was a year ago. After a few tests and things like that it was discovered that Nick's kidney function had gone down dramatically. We were now looking at 2 years before Nick needed a new kidney. We. Were. Devastated. 2 years? 2 YEARS?!? We had so much time a year ago, now we have 2 years. Nick was just starting in his career. We had just started a family, we didn't own a house and weren't married. We wanted to do so much, but now all we could think about was 2 years and he would be on dialysis. We dealt with the news and Nick started his new job. Nick's doctors were trying to get his medications right and just keeping an eye on his progress so he was having regular appointments and blood tests.  

We had another appointment in February  Nick's blood work wasn't good. It was here we discovered more about his percentages. In the beginning of 2011 his kidney function was at 80%. By December 2011 it had gone down to 30% function (which explains the weight gain, it was fluid, and also the exhaustion  however the doctor had failed to mention this). This appointment we discovered his kidney function was at 13%. This so called slow moving disease was now moving very fast, he was started on very strong steroids to stop the progression. Over the next few appointments over the next few weeks his percentages seemed to go down by 2% every week. During that time they did a biopsy of his kidney which revealed nothing. So by the end of March we were told Nick was being booked in for surgery to start dialysis. Once again we were devastated. We knew it would help Nick to feel better in the long run, and it was needed for him to live. We were still upset. The surgery was set for just after Easter. The doctor told Nick that since the steroids weren't working he could stop taking them. So he did. 

The next few days were hell. Nick was busy at work and had stopped taking steroids. Which we assumed would be fine. Boy were we wrong. Nick went through major withdrawal  Like shaking uncontrollably, sweating and his skin hurting all over. I urged him to go to the doctor or at least call in sick. However, he was on a huge project at work on wanted to contribute and make a good impression. He hated being sick, and letting people at work knowing that he was sick. So he soldiered on. This just shows what kind of stubborn but amazing person Nick is. 

April came along, and he had surgery to prepare him for dialysis. It was only two weeks away and Nick would be on dialysis and feeling better. We thought we had reached rock bottom and the only way was up. We had the training, and it we got it really easily. We knew what we were doing and it was time to start dialysis. The first night and Nick was about to hook up to his machine when we noticed something. His scrotum was enlarged. We had chosen peritoneal dialysis so this was not a good thing ( I have included an explanation on this next so you can understand this part of the story).

"Peritoneal dialysis (PD) is a treatment for patients with severe chronic kidney disease. The process uses the patient's peritoneum in the abdomenas a membrane across which fluids and dissolved substances (electrolytesureaglucosealbumin and other small molecules) are exchanged from the blood. Fluid is introduced through a permanent tube in the abdomen and flushed out every night while the patient sleeps."

So basically, it puts fluid in the abdomen which draws out the impurities from the blood which the kidneys normally would do. We were told that sometimes the membrane could tear with the pressure of the fluid. We were to wait two weeks, and then Nick was given a scan to see the progress. He had a hernia. Turns out rock bottom was a little lower than we thought. Nick now had to get another surgery and wait FOUR more weeks after that to begin dialysis. It was 6 weeks after he was supposed to start. He was feeling terrible, had no energy and the 6 weeks were hell. 

Once dialysis started Nick felt so much better, although we were having trouble with Nick's dialysis. It wouldn't drain our properly at night, it would beep and he would have to sit up for about 30 minutes. Not for every drain, but two or three a night. They have x-rayed, and tried a few different things but this problem had not been fixed to this day. 

So when things started to get better we found our his mother was a match for Kidney donation and they began to work her up in order for her to donate. Nick only has his mother and Aunt that are blood relatives that can donate, so his mother was our best bet. It looked great and in October Nick was chatting with his doctor who said as long as the last test for his mother went well he should have new kidney either late 2012 or early 2013. However, it was not meant to be,  they didn't think that her kidney would be big enough for Nick, and that if anything were to happen to her, there is a chance that her one kidney wouldn't hold up. 

So we are back to square one, Nick's Aunt is now being worked up and we will see how it goes. But if I seem up and down, its because my life is. I honestly feel like I go through stages of happy and sad, and stages of depression. I know it is not me going through this, and I am lucky that even though Nick is sick, he still agreed it was best for me to stay home the first year of Sophia's life. I think I found it hard not having my family near by. Sometimes in times of hurt, you just need that reassuring hug from your mama. 

This is why I have decided that 2013 WILL be our year. Nick will get a new kidney, there will be minimum setbacks. We have been approved for a mortgage and are house hunting. I am looking for a job, and I want to start something new, a hobby? A craft? We will be in a new house. This year will be good, I have laid all my cards out, and now the only way is up! I know this post was a bit much, but I feel that I wasn't talking about the big elephant in the room!

Inspiration and info-overload, 

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