Wednesday, May 16, 2018

My Long Qt-Versary

Yesterday marked 17 years since I was officially diagnosed with Long QT Syndrome, which means I was diagnosed on May 15, 2001. Some people may ask why I choose to celebrate this day? And the answer is simple: I celebrate because it was a life changing moment in my life. It has defined the rest of my life, although I do my best to not let it control me. After all, I'm normal in every single way, except for this one thing. I had to change a few aspects, but other than that, I'm fine.

It also means that I've been taking my beta blocker medication for 17 years as well. I'm on Nadolol and at times, it wasn't easy. I was only 14 years old when I started taking it. It left me really fatigued for several weeks and getting back to an exercise routine (with only activities that my cardiologist cleared me for) was nearly impossible. I've been through a couple dosage changes. The first one didn't effect me too much as it went only from 10mg twice a day to 20mg twice a day and it was within a year I believe of my diagnosis. It was meant to help me with my migraines at the time, but that's not part of my Long QT story. In 2009, my dosage went from the 20mg twice day to 40mg twice a day, which is where it currently is to this day. It went up then because I got too used to the old amount. That was definitely the worst I have ever felt while my body adjusted to the new amount, but I managed to get through it slowly but surely. I will elaborate on all of this as I'm bringing back my Long QT series soon. I had started it last year, but circumstances have prevented me from continuing it. I'll post my links to my story and how I got to the diagnosis at the end.

While dealing and managing side effects hasn't always been easy, I feel like it's nothing compared to the fact that I haven't had a major symptom of Long QT in these 17 years as well (my last seizure was in February 2001, only a couple months before getting diagnosis). I have had some minor issues so I can't complain. It does help that Nadolol is the preferred and best treatment in managing Long QT Syndrome. Click here for a recent article discussing this issue. This does not mean that everyone tolerates it as well as I have. 

Since the Nadolol has worked so well with me, I wanted to take the time to note the importance of taking medication as recommended. Yesterday, in one of my support groups, someone named Ellie posted the following about her daughter: 

This past Sunday, my daughter-Taylor came face to face with the ugly truth of SADS (Sudden Arrhythmia Death Syndrome)- LQTS Type 2. In 2012, our entire family was genetically tested for LQTS. We tested positive for the HERG gene a rare mutation which puts us at risk for sudden death. At the time of diagnosis, Taylor had not had any warning signs or symptoms typical of LQTS Type 2. Her recorded QT on EKGs at that time was 460. The EP and cardiologists that were on our family's case felt that treatment with a daily beta blocker would be appropriate for Taylor.  Taylor began beta blockers but struggled with the side affects. She decided on her own that she would stop the betas.
Fast forward to this past Sunday, I can say we are so lucky to have her with us today! She survived a sudden cardiac arrest Sunday evening. Her roommate found her unconscious, blue, and not breathing- He was quick enough to act and immediately called 911- by the time the first responders arrived her heart had naturally and slowly began to revert back to its natural rhythms- and CPR was not necessary by the time the paramedics arrived. She was transported via ambulance to the local hospital and admitted.
Upon arrival a 12 lead EKG revealed her QT was 525. She has been seen by both cardiologist and the EP and all appropriate tests have been run. She is scheduled for placement of an AICD this afternoon at 4pm.
Taylor's birthday is on the 16th- 26 years old on Wednesday! As her mother- I am so thankful she is here with us and relieved the cardiologists are being assertive and pro active with their treatment and the decision to move forward with and AICD placement. We will be celebrating way more than just a birthday this year!!!!
Taylor is a healthy very active and social, young adult. She had created the perfect combination of circumstances to lower her QT threshold which put her at a very dangerous high risk for the SCA to occur. She is an active water girl and had spent the weekend at the lake- water sports, lots of sun, alcohol consumption, energy drinks, little sleep...and dehydration were all part of the picture. I share this here in hopes to raise awareness of the dangers and warning signs of this rare genetic disease.
We were given permission to share, but I changed some names/places for privacy. I bear no judgement on her daughter's decision to not take the medication, but I'm putting this out there to know the risks involved. The problem with Long QT syndrome is that it can be unpredictable and events can happen at any given time, even if you haven't had a symptom in years. The purpose of betas and other treatments is to prevent events from happening, but it doesn't necessarily mean another event won't occur. That's one of my biggest fears - that I'll have another seizure or symptom at some point in my life even though the Nadolol has done its job for 17 years. It's the scary part of Long QT Syndrome and it doesn't come with any warning - the symptoms happen suddenly with little to no warning.

As I celebrate this day, here's to 17 more years symptom free.

My Journey that led to Long QT Syndrome:
My First Seizure
The Second Seizure
My Third Seizure Part 1
My Third Seizure Part 2 and Diagnosis

For more information:
Risk Estimate, Best Treatment in Long QT (I linked to this in a paragraph above as well)
Sudden Arrhythmia Death Syndromes Foundation


Sunday, December 3, 2017

NaNoWriMo 2017 Final Update and Review

NaNoWriMo 2017

I've been wanting to do NaNoWriMo for a couple years now, so I finally decided to do it this year for the first time. I thought I would have the time to get it done this year. But I didn't know what I had in store not long after it began. I'm become so used to things not working out for me and unfortunately, completing NaNoWriMo was no exception.

It got off to a great start for about a week and half. I was reaching the average word count each day of 1,667 words and if I didn't, I would catch up the next day or so. It looked promising until my mom got hit with a flare up of sciatica, which she is still dealing with now. It started out okay until it got progressively worse after about a week after the initial start-up. It became where she was able to get around okay, followed by not being able to walk at all (and we're still working on that). What it meant for me was that I gained more responsibilities than ever, with taking care of her, the house, doing NaNoWriMo, trying to get ready for a craft fair for this month, and trying to take care of myself. It left me feeling more tired than ever and there were days where I didn't have a moment to spare. The thing about sciatica is that you just don't know when a flare-up will occur and I had no idea that we would still be dealing with all of this as of this writing. She went to urgent care the first day, where she was prescribed a muscle relaxer and motrin. The following week, we ended up at the ER due to the excruciating pain while we were attempting to get her to an orthopedist appointment, but she was given a lot of medicine and got sent home with oxycodone, Tylenol, and more motrin . It was approaching Thanksgiving and it appeared to be getting somewhat better, but that would be short lived. It still really wasn't getting better and she started getting hallucinations from the narcotic. A couple days ago, we took her to an orthopedist with much pain at that. He only told us to keep giving the Tylenol and motrin; he didn't want to really prescribe anything stronger because he didn't want anything to mess with her heart problems. It hasn't helped much and now we're stuck at the same place.

When she started getting worse, I started having trouble keeping up with NaNoWriMo. While selfishly I want to blame my mom for having it happen when I was trying to focus on myself for a change, I don't blame her because it was out of her, as well as my, control.

I'm pretty sure by now you know what I'm about to say. I did not complete the 50,000 word count, but I did manage to write 41,210 words during November (I did write a bit more, but I wasn't able to get them in time, but it still wouldn't have surpassed 50,000).

My goal wasn't necessarily to reach the 50,000 word count. My main goal was to get myself back in the habit of writing every day. I did accomplish that by managing to write most days out of the month. Based on what I was dealing with, I am proud of myself for reaching that far and I'm proud that I went after a goal. While I do wish I could have reached the 50,000 word count goal, I reached other goals that made it worth it.

I am planning on doing NaNoWriMo again next year and hopefully it will turn out better.


Sunday, November 26, 2017

NaNoWriMo Weekly Update 4

NaNoWriMo Update Week 4

Okay, so I goofed and apparently didn't realize that this would be my second to last update instead of the last like I said last week.

I thought that it would get easier this week, but I still was dealing with challenges. I will be talking all about that next week during the final and overall update.

While the week didn't exactly pan out the way I thought it would, I made some steady progress over the last couple of days. I'm still not certain if I'm going to reach 50,000 words in time, but I am doing and trying my best. Right now, I'm around 34k words.

NaNoWriMo officially ends on Thursday, but my final and overall update will be up next weekend.


Sunday, November 19, 2017

NaNoWriMo 2017 Weekly Update 3

NaNoWriMo Week 3 Update

1. I'm still running behind the word count quota. Right now, I'm around 20 or 21,000 words out of 50,000.
2. I've made a lot of progress over the past couple days.
3. There's a week and a half left.
4. My final and overall update will be posted next Saturday. I'll be  writing about the last days, in addition to my overall outlook, of NaNoWriMo.

Happy Reading and Keep on Writing!


Saturday, November 11, 2017

NaNoWriMo Weekly Update 2

It's Saturday and that can mean only one thing. It's time for my weekly update on NaNoWriMo 2017.

NaNoWriMo Week 2

I wish I could say that I've been hitting my target and goals each day, but that would be lying. Unfortunately, this week I have been dealing with a family emergency that's been more important, but I haven't been able to write as much. I should have known that it would happen, but it's life and there's not a lot I can do about that.

For my story, I have had to change some things around, which is not helping me progress. At the end of the day, the word count doesn't matter. Yes, it's been a disappointing week filled with a bit of despair, but I refuse to give up. I refuse to let setbacks define me and the writing goals I set for the purpose of doing NaNoWriMo in the first place. I do have a lot of work ahead of me for the rest of the month and I believe I can still win this (by reaching or exceeding 50,000 words). Anything is possible if I just believe.


Saturday, November 4, 2017

NaNoWriMo 2017 Weekly Update 1

I'm going to be doing weekly updates on how NaNoWriMo is going every Saturday.

NaNoWriMo Week 1

NaNoWriMo kicked off on Wednesday, so as of this writing, I have just finished day four. In case anyone doesn't know, I am not writing a novel per se. I am writing my long qt book.

Day 1 - I actually got off to a good start. I wrote 2,289 words. Remember, the goal is write at least 1,667 words a day. It was great to go over when I wasn't expecting to.

Day 2 - Not as great as the first day, so I only wrote 993 words. I kept getting distracted and trust me, distractions happen more than you think. It brought my total to 3,282 words.

Day 3 - I was able to have a productive day and wrote 1,917 words, bringing my total to 5,199. It puts me over what I needed. If I would have written exactly 1,667 words up to this point, it would have been at 5,001 words.

Day 4 - Today didn't exactly go as planned, but that's okay. I still got some writing done and wrote 1,003 words. It brings me to my overall total of 6,202, which is below what I needed.

Thoughts on Week 1
I made some progress, but have faced a few challenges. My initial goal of doing NaNoWriMo was to get back into the habit of writing every day, as well as finally finishing writing my long qt book. The problem is I don't know if it's possible to write a minimum 50,000 word book on the topic, but I will be trying my hardest. If I'm able to finish writing the book in under 30 days and it happens to be under the 50,000 word count, I'm thinking about starting a novel after that because it would still be writing something to contribute to NaNoWriMo. I do have a lot of work ahead of me going into next week.


Wednesday, October 25, 2017

NaNoWriMo Official

It's official! I will be participating in NaNoWriMo for the first time this year! In case anyone doesn't know, it stands for National Novel Writing Month. During the month of November, you are challenged to write a novel of at least 50,000 words. That comes to writing 1,667 words each day in the month.

I am not writing a novel, however. I am taking the month to write My Journey with Long QT book, so it will be a nonfiction novel. While I have written some parts of it already, I will be finally finishing the first draft.

I am excited to be partaking in NaNoWriMo. I will be posting weekly updates here on this blog.