Monthly Archives: September 2016

Dear life, please stop throwing lemons at me. 

As of yesterday I was supposed to be getting my genetic results in just one week. Key word’s “supposed to be”.

On Wednesday morning I got a call from the geneticist’s office asking to move my appointment. A part of me wasn’t surprised one bit. Nothing has been on time, in my favor, or just plain old on track for what feels like forever now. 

The appointment has been moved to the end of October. Most of you will say “just one more month”. But here’s the thing, it’s one more month after waiting 4 months and then 6 months before that and then 3 months before that and so on. It’s been two years of waiting hopelessly for a diagnosis. 

Most people are not as eager when it comes to waiting for a diagnosis. But for me, it’s not a diagnosis that scares me. Having all these health issues that can’t be explained or fixed, that scares me. 

When I get these results I am well aware of the possible outcomes. One, I have a mutation that they know about. Two, I have a mutation they don’t know about. Or three, not having any mutations. There are 5,000 some odd genes out of 20,000-25,000 that science understands. I’ve been told by multiple doctors that this kind of testing doesn’t usually bring good news, if any news at all. 

Like I’ve mentioned before, the unknown is just to scary. There are many different opinions on the subject , but I myself, can’t take a chance of not knowing something that could possibly bring treatment options. My geneticist wouldn’t have gone through with the testing if there wasn’t some hope behind it. 

The first thing that came to my mind, as well as my mom’s was that maybe they found something and need more time to cross check. I was so excited for these results. I still am. Unfortunately, there is nothing I can do about them not being ready yet, so all I can do is continue to be patient. 

I’d be lying if I said I wasn’t scared. My emotions have been all over the place. No matter what news I get it’s going to be emotional. I’ve had nightmares all week. Tossing and turning all night. The lack of sleep and stress has really got to me. I’m ready, but I’m not ready. How does one prepare for this? Are my results going to give me hope? Or are they going to take away all my hope? 

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I will not be shaken | psalm 16:8 |

There’s nothing quite like physically, and emotionally preparing yourself for a procedure twice in about a month and then not having it at all. 

June 8th was my original procedure date. On June 7th, I received a call telling me my procedure would have to be rescheduled to a later date due to equipment failure. Better safe than sorry, but I was only figuring another week or so. They then said the next available was July 13th. I was devastated. How much longer could I go on feeling like this? I was exhausted. I couldn’t bare having to go through all these emotions for a second time. 

July 13th came quicker than I thought it would. On July 12th I was waiting for the call to confirm the procedure. It was the second time I took a week off of work, the second time I lost a few nights sleep, the second time I was scared, the second time I felt brave, the second time my emotions were on a never ending roller coaster. Later that day the call came. I was surprised when the nurse said they were planning on doing the battery change on my defibrillator along with the ablation. She said it would most likely be around an 8-hour procedure. I instantly became uneasy. I was so nervous. I was trying so hard to be brave because the only person more scared than I was, was my mom. 

That morning came, and as my family gathered at my house at 4:30 in the morning it became so real. The drive in was silent, the tears came and went the entire way. Ben Rector’s new single “Brand New” was playing as I watched the most beautiful sunrise behind the water tower. I remember thinking to myself, “this song is so relevant in hopes I feel brand new after this”. 

We arrived at the hospital, the nurse took me in to get started. I met with a few doctors and anesthesiologist. The nurse said that their plan wasn’t set in stone. That’s when my doctor came in. He said that he was weary about going forward with the procedure. I couldn’t believe it. This time I had made it to the hospital, had an IV in and was ready to go. After brainstorming with his team, they decided it would be best to do an electrical study before deciding. The plan was for me to be put under sedation while they tried to map out an abnormal rhythm that they felt confident they could stop. If they could, I would have general anesthesia and undergo the ablation. If not, they would change my battery and call it a day. 

Not knowing what they were going to do was actually less scary than knowing I was going in for the ablation. I said goodbye to my mom, dad, and brothers. I don’t like going back to that moment. It was one of the hardest things I’ve done. I was brought into the operating room and hooked up to 4 different heart monitors. The one directly in front of me was probably a 52 inch, flat screen. They administered sedation but before I was quite out they started to try and induce arrythmias. I remember seeing my heart rate climb and watching the monitor while my rhythm became abnormal. I wanted to be asleep so bad. I didn’t want to feel any of that. Finally, after about 15 minutes I was out.

Upon waking they were prepping me for the new defibrillator. At that point I knew that they weren’t able to map out what they needed for the ablation. I laid there feeling defeated and empty. “Is there ever going to be anything that will fix me”? The battery switch seemed to last forever. I was in and out of sleep, and dreaded being awake. I didn’t feel pain but I felt pressure, and a lot of it. I remember telling myself how sore I was going to be that next day because the amount of force they were using to take out the old device was insane. The team was great, everyone in there made me feel as comfortable as they could, but I am not looking forward to that procedure again. 

Once they finished and I was a little more alert the doctor told me that he wanted to send me to another team at Brigham and Women’s who were more experienced in doing more complicated ablations. He said he wasn’t able to induce a monomorphic arrythmia (meaning one spot in the heart sending out an abnormal rhythm) but instead all they could induce was polymorphic (multiple spots) runs. Polymorphic ventricular tachycardia doesn’t have a good success rate when it comes to ablations.

Since then I’ve decided to wait. I will get my genetic test results at the end of this month. I don’t feel comfortable putting myself at risk for a procedure that’s not gaureteed to work. Hopefully I will have an answer that brings a more promising treatment along with it. My biggest fear is that nothing will turn up but I will cross that bridge when I get there.

~Kate~

What has happened to our beautiful country?

I remember being in school and HATING history class. I thought it was the most boring thing ever! I still don’t know much about American history. Maybe I should educate myself before I speak, but I really don’t think it’s necessary. I think we all know things have taken a turn for the worse. We have actually back paddled a little bit. 

This past week has brought some absolutely terrible news to all of us. It hasn’t just been this past week either. Terrible news seems to be the only news lately.

I’ve been trying to not think about what happened in that nightclub. It’s really weighing on me. I don’t know all the facts and details, I don’t want to. I do not want to even begin to try and understand what has happened. The amount of empathy I have for those beautiful souls and their families is breaking my heart. It’s promising to see people come together after such tragedy. But what’s not promising is the divide a tragedy like that causes. I think we as humans blame things like religion, skin color, and sexual orientation because we don’t want to believe that someone could be that evil. We want to so desperately find a reason for the evil. The thing everyone has to realize is that there is no reason for that kind of evil. There really isn’t. We aren’t meant to understand that because things like that aren’t meant to happen. But we are so quick to place blame. We are so quick to attack the president and the religion that we end up being so blind to what really matters. Coming together as a nation, instead of dividing into groups of censorious people. We need to stop placing blame on the innocent. This world is scary for anyone, let’s not make it any scarier by pointing fingers at stereotypes. Oh, and by they way, it is 2016. If a man wants to love another man or a female wants to love another female, or if one wants both, or if a male wants to become a female or vise versa….who cares! I mean really, why is there people who still don’t accept that. 

I’ve tried to explain this to other people before, many didn’t understand. I do not tend to see things like color, religion, or sexual orientation. I’m very accepting when it comes to things like that. I don’t let it form an opinion for me. I like to get to know someone before I judge them. I honestly will never understand how some people can judge without even knowing someone. I know other people that are the same way, but there needs to be more of us.

It’s comes with everything. I mean face it. A handful of cops succumb to brutality, and everyone blames all cops. The government makes bad decisions and everyone blames the president. A bad group of people on a relentless pursuit to power, and we blame all Muslims. A boy falls into a gorilla enclosure and we blame the “black mother”. A little boy gets attacked and killed by an alligator and we blame the “incompetent parents”. Do you really think that’s fair? It’s not. It’s actually disgusting and disgraceful. 

My heart goes out to everyone hurting right now. Everyone who has lost someone due to senseless violence. Everyone struggling with their sexuality, I truly hope you all stay proud of who you are. Everyone suffering from terrible accidents that are so unfortunate to happen. My heart goes out to America. These brave men and women don’t fight for our freedom so that we can take it away from one another. Stop the hate. Life is too short. 

Be kind to one another. 

~Kate

On to the next.

I finally got the date of my procedure. It’s continued to be a struggle, but I will say I’ve had a few good days in between the bad. It truly makes me appreciate the small things in life. I still can’t drive, so my brand new car is just sitting in my driveway. There is a plus to that though, it’s staying brand new ;). I’m starting to get nervous about the procedure, but I’m equally as excited. If this works I’ll be forever grateful.

The good news is, I’m going to see my geneticist this coming Friday. Initially, in 2009 when I first started having heart problems my diagnosis was Brugada Syndrome. My EKG showed signs of it and that’s why I had the defibrillator implanted. I went years without problems after that. I’d have occasional flare-ups but nothing that wouldn’t go away on its own. My heart problems started to get worse in April of last year. More hospital stays than ever, flare-ups that were longer and more persistent, resistance to medications, and my un-diagnosis. 

In November of 2014 I was having abdominal issues which led them to find I had an enlarged liver and spleen. I then went to see a surgeon, he sent me to hematology/oncology, and from there to a geneticist. Then the genetic work up ensued. There were a few diseases that would have explained all my symptoms, diseases that would have tied everything together. I tested negative for all of them. In the meantime, the heart docs “un-diagnosed” me with Brugada Syndrome.

Since then we’ve been trying to get insurance approval for whole exome sequencing (WES). This test will look at all five thousand known genes. It will look for mutations between my mother, father, and me. It’s all quite interesting to me. This will be the test I’ll have this coming friday. I’m hopeful this will bring answers to my medical mystery. unfortunately, nothing is guaranteed , and the test will take months to come back. 

My fear is that they won’t find anything, or worse, they will find a new mutation they know nothing about. I’m so incredibly curious though. This has been going on for so long now and I am more than ready to get a diagnosis. Some people say “just live your life, you don’t need to know”. Yes, that’s a good way to look at it but what if there is a treatment? Wouldn’t I want to know? The unknown will kill me before any disease does and thats just the type of person I am. 

I’d also like to know what my future holds. I’ve already had to come to the realization that I probably won’t ever have kids of my own. I’ve accepted a new career path incase I can’t be a nurse. I’ve realized I can’t do many things. It’s not that I’m giving up, I’m just finding a new way to live. It’s not just me, its my family too. I’m not the only one with health issues, heart problems run rampant on my mother’s side. A diagnosis will give me hope, it will give my family hope and I think that’s what we need.

Grace carried me here, and by grace I’ll carry on.

I want to try and use writing as a therapy. 

So here goes nothing….

I’d like to begin at the start of it all, but I think I’ll start with what I’m struggling with most, my health. 

I am sick. This all started in 2009 but it didn’t quite hit me as hard as it did last Friday. I guess it’s because I’ve never considered myself as being “sick”. It wasn’t until my doctor looked at me and said “you’re sick, and it sucks”. He was right, it does suck. 

He told me he has five patients that he worries about and that I am one of them. Naturally, doctors will worry about a patient that is a medical mystery. A genetic mess. Idiopathic problems stemming from the unknown. It all sounds reassuring doesn’t it? 

So far I may sound bitter, I guess I am. But more than that, I’m scared. You see, nearly three weeks ago I collapsed while I was at school. I felt OK for the rest of that week but then started to feel worse over the weekend. I have times ever since the problems first started that I have a lot of heart rhythm disturbances. Then other times I almost feel normal. I was out of work for an entire week, pretty much confined to my bedroom because every time I moved my heart would go haywire. I had my driving privileges taken away (mind you it was a week after buying myself a brand new car) and I had to take an incomplete at school. 

These episodes are becoming more frequent and unfortunately are not responding to medications. I was told Friday that they would need to go in and do a procedure on my heart within the next couple of weeks. I cried, I cried a lot. And for the first time in a long time I had this sense of impending doom that I just couldn’t shake. 

It’s a terrible feeling. Knowing that your heart literally beats to a different drum. My arrythmias have always been short, lasting all but a second. Now they are lasting minutes. Which explains why I collapsed. I have an internal defibrillator just in case I ever need it, but it’s absolutely terrifying waiting for that thing to go off. I’m told I am more safe than someone without one. I have no doubt that it’s true. But the thing is, I have to rely on that. It’s a constant reminder that I have a life-threatening arrythmia and a tiny pager-like device with wires is going to save my life. The science is there but it’s a hard thing to accept. 

This all has been hard. I’ve been so close to answers, promising ones at best. But nothing turns up. All I can do is hope that I’m on the right track to getting an answer and hopefully one that comes with treatment. In the meantime I am going to continue to live my life because I want to live and I want to continue to fight and beat whatever this is. I have an amazingly awesome support system and I know that I can get through this but in times of doubt I can’t help but feel hopeless. 

Please be kind to everyone, you never know what someone is going through. 

~Kate ❤