us
Friday, April 26, 2013
Monique's Friday Update!
Featuring A Job-Seeking Cane-Wielding Animal Doctorette, A Broken Neck, Some Water, and Bad Artwork! How can this end poorly? Tri, Tri Again!
Wednesday, April 24, 2013
Jenny...Getting back to the swing of things....
So April (my heart twin) and I set out on a quest about a month ago to figure out how to get programmed in such a way that we could move like normal people. We were both using the rate response function of our pacemakers and had to bounce for 30 seconds so our pacemakers would click on and we'd have enough air to climb a flight of stairs. So imagine you are at the Aquarium going on a leisurely stroll and encounter two women oddly jumping up and down every time they can't breathe. It's would have been enough to make us cry on our own but we had each other so we just laughed. It was kinda hilarious. We tried to see if we could start a trend and make somebody else do it (that wasn't a robot) but sadly no one succumbed to peer pressure. Ha Ha. This also caused problems in everyday life like going to the grocery store (reaching for things, bending over, any quick movements at all.) So all of our awake hours were spent trying to figure out a way to do very normal things that people take for granted (like getting off the sofa and breathing at the same time!)
So we both went to our amazing heart surgeon (Dr. Mehdi Razavi) and demonstrated our dilemmas. How you ask? By running full speed down the hallway at the cardiologist's office. Actually to get technical the Electro-Physiologist (EP) Cardiologist's office. So we looked like idiots but we didn't care. He's completely used to my chain cursing and silly behaviors and April's insistence that we can be better than this. We deserve better than this after we went through so many surgeries to get well. Not to be greedy but...We weren't leaving until we found some way to make these devices let us move normally.
A guy named Foster (who works for the manufacturer) of our pacemakers showed up at the door saying he had an idea but wasn't sure if it would work. We said Yes before he even told us the idea. He could have said he was going to program us to automatically set off alarms everywhere we went. We'd have said yes. (This has been my 13 months of saying yes to weirdo experimental surgeries so why stop now right?) So Foster came up with a weird way to program our pacemakers not to be so sensitive to our chests moving (when we are working out.) The caveat is we both use our pacemakers 99% of the time. So our battery life will be shorter by a few years. But who cares if we can live like normal people!!! So Foster reprogrammed us both and sent us off to run the building, run stairs, hop up and down, and generally behave like well, idiots. To put things in perspective 98% of pacemakers are "rate response" which means as people move then their pacemaker "clicks" on. The problem with rate response is it didn't click on fast enough for us and was effected by everything, even the movement of your chest if you didn't have on a really tight bra. I couldn't even look over my shoulder without my heart speeding up as fast as it can go. Any type of movement was awful, causing constant suffocation.
Our problem was the type of rhythm problem April and I have is called a junctional rhythm. So we suffocate unless the pacemaker is "on." So Foster allowed us something that we didn't think possible. We both can get up from a seated position and breathe. Doesn't sound like that big a deal right? Well it is if you can't do it. Especially if you have little kids you need to chase. Little children whose lives depending on you to run and catch them. I can catch them now! Thanks to Foster for taking the extra time to help us.
I was so sick when I got the pacemaker that I couldn't walk a few feet. So the idea of moving enough to run, and being able to breathe well enough to ride a bike sounds like an amazing feat. I've been cleared to workout for the past two weeks I'm 8 weeks post implant date of my pacemaker "Bob". Need to work on a better name for him! It's been a very interesting 2 weeks. Full of things I had not thought about like finding sports bras that work with a pacemaker with padded straps so they don't press into the pacemaker but are tight enough so my pecs cannot move. Because that feels weird and it's uncomfortable and running in the gym while holding your boob is not socially acceptable. So people who have pacemakers can't usually ride bikes. Why? Because unless their chest is moving the pacemaker doesn't know they are working out and won't increase their oxygen levels. But we have programmed our way out of that situation. I almost cried sitting on that bike through an hour long spinning class. Because I freaking did it. I did it on the first day I was cleared to workout. After being in bed for 8 weeks. Pretty amazing day.
Which leads me to my next point. The whole reason I picked biking that day (THE FIRST DAY I HAD WORKED OUT IN 8 WEEKS, IN THE SAME GYM I PASSED OUT IN, 2 MONTHS TO THE DAY) was so I was could test this theory for my new NYC friend who was getting a pacemaker and wanted to be able to ride a bike. I had to test it so I could let her know everything would be okay and we'd all have normal lives after this. So thank you to my new friend for giving me the courage to ride again. Even if it was just so I could help you. I wanted to help her but I helped myself too because she gave me the courage to try it. So you see people. Here's the lesson of the day...Helping other people is good for you. Healthy even. Even when things look bleak for you try in some some way to bring goodness to the world. Because you always get back more than you give....
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| Jenny |
Friday, April 19, 2013
Tuesday, April 16, 2013
Jenny- Not Giving Up...Not Giving In..
Today I wanted to talk about some of the not so rosy side of dealing with this stuff. It's the SETBACKS. I've tried at least 35 heart medications in 10 years, I've had 5 heart docs, and within 13 months, I've had 8 surgeries. So I've spent 13 months either waiting for the next surgery, having surgery, or rehabing from surgery. I always had waiting time in between to wonder if I had a chance to get better. It's the hardest part of living with chronic problems. The waiting, not knowing if you are making the right call with a particular problem. It's not that these setbacks don't upset us. WE just don't wallow in our grief. WE do SOMETHING. I just have learned over the years to move on and face the problem head on. No time for complaining. Only time for action and fighting back.
Life is about CHOICES. I don't take anything for granted anymore. From something funny my kids say to me to getting to hug my husband after he's been working non stop. No one knows when our last day will be here. Life is about spending time with those we love and making sure everyone in our lives knows exactly how we feel about them. I'm friends with people who I love, who have seen me in good times and bad times. Real, genuine, honest people who also have ups and downs. Life is about rolling with the punches and HELPING YOUR CREW (friends and family.) I wanted to write on this blog with my two amazing friends to give back a little. To help educate the public on our causes and to answer questions people have asked of us.
A question I often get is why I push myself so hard. It's because two little people are depending on me, it's because I want a life outside of heart disease. I choose to live and fight EVERY DAMN DAY. Whatever needs to happen to keep me able to take care of my children and be a wife is what I will ALWAYS choose. Sometimes that means 2 hours a day in the gym. Sometimes that means staying in bed and hardly moving. But I will never give up. Some things take a lot longer than I want them to take. NOTHING WORTH HAVING IS EASY. Last week I went to Spinning for a whole hour. A whole freaking hour. After not stepping foot in the gym for 2 months it felt awesome. I smiled the whole time, amazed that this heart completed that goal. My goal was to move enough to sweat. I accomplished that goal. I try to surpass my goals. I compete with myself. Life is about choices and sometimes you have to CHOOSE TO BE SUCCESSFUL.
Sometimes I use other people's stories as motivation too. After my open heart surgery I worked so hard to get my strength back. My motivation was to be able to lift 100 pounds. Why 100 pounds? Because it was more than Monique weighed and I wanted to come to town and take care of her when she couldn't walk. I had my open heart October 23rd and on New Year's Day I spent with Monique. I accomplished my goal of seeing her and helping her get to therapy. It was only for a day but it meant so much to me to see Monique's progress and my progress at the SAME time. We were both in the ICU at the same time. She made me push through the pain when my lung had been deflated to make room to operate on my heart. Perky wrote me constantly offering her support and wisdom. I couldn't have gotten those these times without the support of my family and my friends. So treat your people like GOLD because they are precious.
Of course I get frustrated and cry. Yes, I get pissed that I didn't cause this heart issue but what does that solve? I don't say WHY ME? I say WHY NOT ME? God has a plan for all of us. I must be strong enough to handle it. When things happen I go after fixing the problem. Which is exactly what Monique and Perky do too. We always pick each other up. But all of us have SETBACKS. We all mourn for the other one who is having a setback at that time. Because that's what friends do. You stay for the good times, you stay for the hard times, and you realize having the hard times make the good times even better.
When I was in the ICU after my open heart I had a chest tube and was in so much pain I was audibly sobbing. My husband, my mother in law, my daughter and my friends were coming by later that day but at that moment I didn't have anyone with me. A kind lady who was there with her husband asked if she could come sit with me. A stranger, her name was Lena. I said yes. She prayed with me, she held my hand, and got me through the most painful experience of my life. She still writes me every month and I write her. What a gift that such a sweet person took time out of her day to say such kind words to me. I'll never forget her. She CHOOSES everyday to wake up an be a light in someone's life. To be a GENERATOR OF CHANGE. What a gift she is as a person and a human being.
We as a society need to get involved. If you see a child who needs help, or a person who looks like they are having the worse day ever be brave. Step in. Offer assistance when needed, offer a kind word. Which is exactly why I choose to spend my spare time helping other heart patients. I was given a gift and I survived. Many others did not make it. I choose to live a life of meaning and purpose. I'm NOT BROKEN, I'm not defective. I am BIONIC and full of TITANIUM and now my life is dedicated to helping other people get their lives back too.
Life is about CHOICES. I don't take anything for granted anymore. From something funny my kids say to me to getting to hug my husband after he's been working non stop. No one knows when our last day will be here. Life is about spending time with those we love and making sure everyone in our lives knows exactly how we feel about them. I'm friends with people who I love, who have seen me in good times and bad times. Real, genuine, honest people who also have ups and downs. Life is about rolling with the punches and HELPING YOUR CREW (friends and family.) I wanted to write on this blog with my two amazing friends to give back a little. To help educate the public on our causes and to answer questions people have asked of us.
A question I often get is why I push myself so hard. It's because two little people are depending on me, it's because I want a life outside of heart disease. I choose to live and fight EVERY DAMN DAY. Whatever needs to happen to keep me able to take care of my children and be a wife is what I will ALWAYS choose. Sometimes that means 2 hours a day in the gym. Sometimes that means staying in bed and hardly moving. But I will never give up. Some things take a lot longer than I want them to take. NOTHING WORTH HAVING IS EASY. Last week I went to Spinning for a whole hour. A whole freaking hour. After not stepping foot in the gym for 2 months it felt awesome. I smiled the whole time, amazed that this heart completed that goal. My goal was to move enough to sweat. I accomplished that goal. I try to surpass my goals. I compete with myself. Life is about choices and sometimes you have to CHOOSE TO BE SUCCESSFUL.
Sometimes I use other people's stories as motivation too. After my open heart surgery I worked so hard to get my strength back. My motivation was to be able to lift 100 pounds. Why 100 pounds? Because it was more than Monique weighed and I wanted to come to town and take care of her when she couldn't walk. I had my open heart October 23rd and on New Year's Day I spent with Monique. I accomplished my goal of seeing her and helping her get to therapy. It was only for a day but it meant so much to me to see Monique's progress and my progress at the SAME time. We were both in the ICU at the same time. She made me push through the pain when my lung had been deflated to make room to operate on my heart. Perky wrote me constantly offering her support and wisdom. I couldn't have gotten those these times without the support of my family and my friends. So treat your people like GOLD because they are precious.
Of course I get frustrated and cry. Yes, I get pissed that I didn't cause this heart issue but what does that solve? I don't say WHY ME? I say WHY NOT ME? God has a plan for all of us. I must be strong enough to handle it. When things happen I go after fixing the problem. Which is exactly what Monique and Perky do too. We always pick each other up. But all of us have SETBACKS. We all mourn for the other one who is having a setback at that time. Because that's what friends do. You stay for the good times, you stay for the hard times, and you realize having the hard times make the good times even better.
When I was in the ICU after my open heart I had a chest tube and was in so much pain I was audibly sobbing. My husband, my mother in law, my daughter and my friends were coming by later that day but at that moment I didn't have anyone with me. A kind lady who was there with her husband asked if she could come sit with me. A stranger, her name was Lena. I said yes. She prayed with me, she held my hand, and got me through the most painful experience of my life. She still writes me every month and I write her. What a gift that such a sweet person took time out of her day to say such kind words to me. I'll never forget her. She CHOOSES everyday to wake up an be a light in someone's life. To be a GENERATOR OF CHANGE. What a gift she is as a person and a human being.
We as a society need to get involved. If you see a child who needs help, or a person who looks like they are having the worse day ever be brave. Step in. Offer assistance when needed, offer a kind word. Which is exactly why I choose to spend my spare time helping other heart patients. I was given a gift and I survived. Many others did not make it. I choose to live a life of meaning and purpose. I'm NOT BROKEN, I'm not defective. I am BIONIC and full of TITANIUM and now my life is dedicated to helping other people get their lives back too.
Friday, April 12, 2013
Monique-Jenny's update and my Friday Update!
I'm sure Jenny will tell you in her own words, but I happen to be posting now, so I'll update you - she finished a spinning class yesterday! This Is Big! She's stoked, so am I!!
Every Friday I do an update on my blog: Tri, Tri Again! just for your perusal. I'll copy it here. Have a great week!
In the news:
Work-well...this week? The only thing holding me up is honestly redundant superfluous paperwork. Incredibly frustrating. I'm losing hundreds of dollars a day because of it.
Taxes-done! almost ;)
Bike court-I was all prepared to defend myself, it was a no-brainer really and after reading the laws it was very clear to me that I was in no way in the wrong. THEN I happened to know a lawyer who was there for other cases, who is also a runner/triathlete, who discussed my case with the judge and had my tickets cleared! Woohoo! Not that I wouldn't have won it on my own but it was a big weight off my shoulders. Also there was Ben Broussard, who's family, if you remember, took the video of Nic and me crossing the finish line. Completely ran into him by chance. I love this place!
Driving-soon I hope!
Therapy-FaBuLoUs!! Finally got to try the e-stim machine that would help my hams overcome my quads, but it didn't work very well for me after all. MAINLY because I've improved so much over the last couple of weeks that it was obsolete! It's not perfect, but my quads are really starting to calm down. Things are looking totally up! No One Knows, I may never get better past this point, but I'm expected to make a 95%+ recovery. I say 100%.
My hand is also getting better! I can shake hands again now - this is big! - and my strength and function is returning. SLOW but definite progress. I get frustrated but Simonne my OT can always show me where I've made progress even if I can't see it myself.
Lastly, I'm part of another blog if you haven't checked it out already, with two other women that battle life-threatening lifestyle changes. We're all the same age, all are mothers, and all stay healthy despite our challenges! Here's the link:
Every Friday I do an update on my blog: Tri, Tri Again! just for your perusal. I'll copy it here. Have a great week!
Friday's Update Spectacular!
Me: I'm soooo sensitive to ambient temperature! I wonder what people did a long time ago before air conditioning when they broke their necks. Oh, that's right, they died!
Nic: Yeah, life was much simpler back then.
Me: Sigh. Things are quite complicated in this day and age.
In the news:
Drugs-down to 25mg baclofen a day, and that does it for prescriptions! I was on 7+ types of meds so this is fantastic. Baclofen is an anti-spasmodic that I'm slowly weaning down. Spasms, by true definition, are created by disruptions in the spinal cord. Related to the hypertonicity of my leg, it happens when the muscle tries to talk to the brain via the spinal cord, and the message is all garbled, making the muscle twitch or contract in various ways. There's a possibility I'll need it long-term, but it's really a small possibility, and way more likely I never needed it in the first place! Baclofen just never seemed to work for me. It doesn't cause any side effects really, I just don't want to be on meds if I don't need them. My spasms are considerably better; now they're tiny and just a bit annoying every once in a while.
Spasms are hard for me to talk about because they can be debilitating, they can progressively get worse, and many people have them and they never ever ever go away. I'm just hopeful mine will since I'm so highly functioning. But I'm getting sad and fearful just typing about it.
Luckily I haven't had ANY pain since the first few weeks of hospitalization, and I haven't needed pain meds at all this year!
Spasms are hard for me to talk about because they can be debilitating, they can progressively get worse, and many people have them and they never ever ever go away. I'm just hopeful mine will since I'm so highly functioning. But I'm getting sad and fearful just typing about it.
Luckily I haven't had ANY pain since the first few weeks of hospitalization, and I haven't needed pain meds at all this year!
Work-well...this week? The only thing holding me up is honestly redundant superfluous paperwork. Incredibly frustrating. I'm losing hundreds of dollars a day because of it.
Taxes-done! almost ;)
Bike court-I was all prepared to defend myself, it was a no-brainer really and after reading the laws it was very clear to me that I was in no way in the wrong. THEN I happened to know a lawyer who was there for other cases, who is also a runner/triathlete, who discussed my case with the judge and had my tickets cleared! Woohoo! Not that I wouldn't have won it on my own but it was a big weight off my shoulders. Also there was Ben Broussard, who's family, if you remember, took the video of Nic and me crossing the finish line. Completely ran into him by chance. I love this place!
This is the video, how awesome Ben & Family! Whoa, Really loud!
Driving-soon I hope!
Therapy-FaBuLoUs!! Finally got to try the e-stim machine that would help my hams overcome my quads, but it didn't work very well for me after all. MAINLY because I've improved so much over the last couple of weeks that it was obsolete! It's not perfect, but my quads are really starting to calm down. Things are looking totally up! No One Knows, I may never get better past this point, but I'm expected to make a 95%+ recovery. I say 100%.
My hand is also getting better! I can shake hands again now - this is big! - and my strength and function is returning. SLOW but definite progress. I get frustrated but Simonne my OT can always show me where I've made progress even if I can't see it myself.
FestiVELO-Laffy's 1st Bike Festival was last Sunday, and a huge success! It's "Bike To Work" week this week. I'm incredibly hopeful for the cycling future here!
Lastly, I'm part of another blog if you haven't checked it out already, with two other women that battle life-threatening lifestyle changes. We're all the same age, all are mothers, and all stay healthy despite our challenges! Here's the link:
Thursday, April 11, 2013
Perky- A little bit about me....
My name is Amy, otherwise known as "Perky"! Jen gave me that name in high school and I've always loved it! I'm the mother of three beautiful kids, the oldest of which was Bailey, my 14-yr-old who was in the car with me when our lives were forever changed by a head-on collision with a drunk driver on 12/31/11. I'm not gonna lie...this has been very hard, and like my counterparts, I don't shy from a challenge!!!
Bf my accident, I graduated magna cum laude in pre-med with minors in chemistry, physics and Latin. I was supposed to take my MCAT to get into medical school in April 2003, but found out I was pregnant for my 3rd child, and realized I couldn't chase my dreams just then. I continued to run 6 miles per day (8.5 min/mile) for all 3 pregnancies, and prided myself on not being a pregnant couch potato:-). I went on to get my BS in nursing and graduated in 2009, and was working as a telemetry nurse at the time of my accident.
Don't worry...I'm not as uptight as I sound! I DO have a type A personality, but also a crazy sense of humor, and like my youngest baby, Mary, pride myself on being "the funnest girl I know"!!!
The accident broke my left leg in 4 places, one of those being a completely crushed kneecap. I crushed my left elbow, broke almost every rib, had a spinal fracture, bleeding in my brain and a ruptured spleen. Bailey had a broken left hand and had 2 permanent teeth knocked out.
I don't want this accident to be the thing that ends me, or my determination. As Jen and Monique can attest, it's hard keeping yourself mentally and emotionally upbeat thru such difficult circumstances, and we rely on each other a LOT to get each other thru!!! We've all lived nightmares, but thank God we had each other to get us thru!!! They are two of the best, strongest women I know, and I'm honored to call them "friends".
Wednesday, April 10, 2013
Monique- A little bit about me....
I'm Monique. I'm lazy, so I'm going to use the bio I put together for The Rotary Club of Lafayette North recently!
Monique was born and raised in New Orleans, Kenner really, until her last couple of years of high school when she moved with her family to Covington to raise ratites (ostriches, emus, rheas.) LSU survived her 5 years there while she received her Bachelor's of Science in Wildlife and Fisheries with minors in Zoology, Microbiology, and Music Composition. She then finally received her DVM from Ross University on St. Kitts Island, spending her clinical year at Mizzou in Columbia, Missouri. She now works at ULL NIRC as a vet, and lives with her son, Nic, 2 dogs, 2 cats, and a snake. She loves reading, hiking, pianoing, birdwatching, and of course Saving the Animals!
Besides that, I started triathlons just about a year ago and was training for one, bicycling, when I was hit from behind by an unlicensed/uninsured/unregistered driver, which broke my neck. I didn't know if I was going to be able to feed myself, much less walk, again. But, I'm recovering. It ain't easy, and it's tough, but it's happening! I'm 100% out of a wheelchair and I aim to race again!
I have my own blog here: Tri, Tri Again!
Jenny and I have known each other since high school and have been friends since college, through our mutual friend Loey! Jenny introduced me to Perky because our situations are so similar. So here we are!
OH, my boyfriend and I were recently temporarily famous for this silly picture at the end of a half marathon...
Here's us: The Today Show
Monique was born and raised in New Orleans, Kenner really, until her last couple of years of high school when she moved with her family to Covington to raise ratites (ostriches, emus, rheas.) LSU survived her 5 years there while she received her Bachelor's of Science in Wildlife and Fisheries with minors in Zoology, Microbiology, and Music Composition. She then finally received her DVM from Ross University on St. Kitts Island, spending her clinical year at Mizzou in Columbia, Missouri. She now works at ULL NIRC as a vet, and lives with her son, Nic, 2 dogs, 2 cats, and a snake. She loves reading, hiking, pianoing, birdwatching, and of course Saving the Animals!
Besides that, I started triathlons just about a year ago and was training for one, bicycling, when I was hit from behind by an unlicensed/uninsured/unregistered driver, which broke my neck. I didn't know if I was going to be able to feed myself, much less walk, again. But, I'm recovering. It ain't easy, and it's tough, but it's happening! I'm 100% out of a wheelchair and I aim to race again!
I have my own blog here: Tri, Tri Again!
Jenny and I have known each other since high school and have been friends since college, through our mutual friend Loey! Jenny introduced me to Perky because our situations are so similar. So here we are!
OH, my boyfriend and I were recently temporarily famous for this silly picture at the end of a half marathon...
Here's us: The Today Show
Jenny- Life is about perspective...
So I was talking to one of my best friend's last night (Queen D) and was thinking about perspective. It's what has allowed Me, Perky, and Monique a chance to thrive. Because all of us know too well what could have happened to us, while others might not survived. It's due in part to our will and drive. To be around for our children. Also due in large part that we are some stubborn broads who don't know how to quit.
Almost five years ago I was very sick with a respiratory infection and in the hospital. It was Christmastime and it was snowing, in Houston, and I was in the hospital. Not able to move enough to look up close out the window at the beautiful snow. I had to leave Ava with family and head into the hospital because I was turning blue. It was really hard to tell her goodbye. Little did I know I would keep having to tell my kids goodbye over and over through the years. Never knowing for sure if I could keep my promise to come back to them.
The docs didn't realize then that my heart would get WHACK ASS CRAZY whenever I got a cold. Yes, that's a technical term (whack ass crazy. It's in Websters ya'll.) It's a hallmark of the condition April (My heart twin) and I have called Inappropriate Sinus Tachycardia. Which I think is hilarious. It means my heart is exceeding fast when it shouldn't be. My pulse was 200 asleep. (Most people are being 60-80 asleep) So it's like running as fast as you can while you aren't moving. But IST (Inappropriate Sinus Tach) is pretty interesting because then you can say cool stuff like "Sometimes I'm inappropriate and sometimes I am not inappropriate." To a doctor. Then you can sit back and see if they chuckle. That's kinda my goal when I'm in the hospital. It's VERY hard for me not to joke with the doctors because they are all serious with their white coats and refusing to sit when they walk in a room. So I can't help myself but joke with them and chain curse. Chain cursing is the best. They've given up on me being serious so now they just sit and talk and me.
I knew I was dying (this was before I found the best doc in the universe to fix my whack ass heart.) It was very early in the morning and I couldn't breathe. I hit the emergency button but no one came. A resident found me, looked at me and said "we'll try not to intubate you." and then the dude WALKED OUT. He actually ran but still he didn't stay with me. It was a incredibly helpless feeling seeing him walk out. He was going to get help and move me to the ICU. They put me in the ICU and put me on a machine that would breathe for me. Not a respirator but a bi-pap. It actually makes your lungs move so it's pretty weird and makes you do a wicked Darth Vadar impression.
I could have taken that moment to feel sorry for myself but inside I was laughing because the way this thing straps to your face it was too big so it made this tuba/fart noise that I thought was hilarious. Sometimes you have to laugh. Even when you feel like you are dying. When Loey (no, none of my friends have real names. Go with me here people.) got to the hospital she took me for a walk which meant disconnecting the thing that was breathing for me. Which makes you very weak instantly. Like tossing a fish out of water. As we walked through the corridor I realized I was the only person in that unit that wasn't in a coma. I was going to fight and some of these people next to me would not make it home. Like the 16 year old girl in the room next to me.
I figured out I could say 7 words until my heart would hit 180. I was in SVT which feels like you are being suffocated. So I spoke quickly, 7 words only are a time. Then they brought me a notebook. I used it to tell Loey, "This isn't some Steel Magnolias shit. I'm going to be okay. " They told me to write out my entire medical history and if they didn't figure it out I would die. They could use some positivity training in that hospital! I signed releases so they could get my medical record but the system was slow. Too slow for them to get what they needed from my Cardiologist so they could help me. I was so tired from trying to breathe I wanted to just sleep. I just wanted to rest. But I couldn't. Because I had a 2 year old at home waiting for her mommy. I'd have to find the strength to do this. I did it. They sent me home a week later broken and exhausted. Without knowing why I tanked in the first place. Not knowing a way to prevent it from happening again. I spent the next few months in bed watching movies. But I got to see my daughter and my husband again. I went home, unlike the other people in the ICU.
So it's all about perspective. You can choose to feel sorry for yourself or you can find a way to have fun. Like removing your red or yellow socks which mark you as a (DO NOT LET THIS JACKASS WALK) patient and going to for a quick stroll in the Cardiac unit and see how long it takes so someone to tackle you and bring you back to your room. Or crank calling people with my robot voice. Yes, that happened too. Crazy vocal cord stopped working and it made me sound like a robot for months. But it made for awesome phone messages.
So what's I'm saying is being friends with me is dangerous. Because some of my best friends have awful shit happen to them. SO YOU SHOULD MAKE YOUR DECISION WISELY. But I promise if you hang with me I will make you laugh. Try to find something positive out of every situation. It will help you get through. Yes, I have a whack ass heart and set off metal detectors. But I'm here and alive.
Almost five years ago I was very sick with a respiratory infection and in the hospital. It was Christmastime and it was snowing, in Houston, and I was in the hospital. Not able to move enough to look up close out the window at the beautiful snow. I had to leave Ava with family and head into the hospital because I was turning blue. It was really hard to tell her goodbye. Little did I know I would keep having to tell my kids goodbye over and over through the years. Never knowing for sure if I could keep my promise to come back to them.
The docs didn't realize then that my heart would get WHACK ASS CRAZY whenever I got a cold. Yes, that's a technical term (whack ass crazy. It's in Websters ya'll.) It's a hallmark of the condition April (My heart twin) and I have called Inappropriate Sinus Tachycardia. Which I think is hilarious. It means my heart is exceeding fast when it shouldn't be. My pulse was 200 asleep. (Most people are being 60-80 asleep) So it's like running as fast as you can while you aren't moving. But IST (Inappropriate Sinus Tach) is pretty interesting because then you can say cool stuff like "Sometimes I'm inappropriate and sometimes I am not inappropriate." To a doctor. Then you can sit back and see if they chuckle. That's kinda my goal when I'm in the hospital. It's VERY hard for me not to joke with the doctors because they are all serious with their white coats and refusing to sit when they walk in a room. So I can't help myself but joke with them and chain curse. Chain cursing is the best. They've given up on me being serious so now they just sit and talk and me.
I knew I was dying (this was before I found the best doc in the universe to fix my whack ass heart.) It was very early in the morning and I couldn't breathe. I hit the emergency button but no one came. A resident found me, looked at me and said "we'll try not to intubate you." and then the dude WALKED OUT. He actually ran but still he didn't stay with me. It was a incredibly helpless feeling seeing him walk out. He was going to get help and move me to the ICU. They put me in the ICU and put me on a machine that would breathe for me. Not a respirator but a bi-pap. It actually makes your lungs move so it's pretty weird and makes you do a wicked Darth Vadar impression.
I could have taken that moment to feel sorry for myself but inside I was laughing because the way this thing straps to your face it was too big so it made this tuba/fart noise that I thought was hilarious. Sometimes you have to laugh. Even when you feel like you are dying. When Loey (no, none of my friends have real names. Go with me here people.) got to the hospital she took me for a walk which meant disconnecting the thing that was breathing for me. Which makes you very weak instantly. Like tossing a fish out of water. As we walked through the corridor I realized I was the only person in that unit that wasn't in a coma. I was going to fight and some of these people next to me would not make it home. Like the 16 year old girl in the room next to me.
I figured out I could say 7 words until my heart would hit 180. I was in SVT which feels like you are being suffocated. So I spoke quickly, 7 words only are a time. Then they brought me a notebook. I used it to tell Loey, "This isn't some Steel Magnolias shit. I'm going to be okay. " They told me to write out my entire medical history and if they didn't figure it out I would die. They could use some positivity training in that hospital! I signed releases so they could get my medical record but the system was slow. Too slow for them to get what they needed from my Cardiologist so they could help me. I was so tired from trying to breathe I wanted to just sleep. I just wanted to rest. But I couldn't. Because I had a 2 year old at home waiting for her mommy. I'd have to find the strength to do this. I did it. They sent me home a week later broken and exhausted. Without knowing why I tanked in the first place. Not knowing a way to prevent it from happening again. I spent the next few months in bed watching movies. But I got to see my daughter and my husband again. I went home, unlike the other people in the ICU.
So it's all about perspective. You can choose to feel sorry for yourself or you can find a way to have fun. Like removing your red or yellow socks which mark you as a (DO NOT LET THIS JACKASS WALK) patient and going to for a quick stroll in the Cardiac unit and see how long it takes so someone to tackle you and bring you back to your room. Or crank calling people with my robot voice. Yes, that happened too. Crazy vocal cord stopped working and it made me sound like a robot for months. But it made for awesome phone messages.
So what's I'm saying is being friends with me is dangerous. Because some of my best friends have awful shit happen to them. SO YOU SHOULD MAKE YOUR DECISION WISELY. But I promise if you hang with me I will make you laugh. Try to find something positive out of every situation. It will help you get through. Yes, I have a whack ass heart and set off metal detectors. But I'm here and alive.
Sunday, April 7, 2013
Jenny's post about April- My heart twin..
So this month (one year ago) I wrote on a heart patient website. (Shocking, I know.) I wrote a post about an experimental surgery (Stellate Ganglion Nerve Block) I had on my heart. A girl my age responded and asked if I was the "miracle" patient she heard about. I told her I was the only patient so it had to have been me. We compared histories and realized we had so much in common. We also lived only one hour apart from each other. So I walked her through the surgery and met her at the hospital when she had her surgery. Tomorrow is her birthday so this post is for her.
Repost from the original site where we met. "Jen, my doctors want to do this for me too. Does insurance cover this? People dont feel their heartbeat? Do they think about every breath they take? I heard my doc did this for one other woman with fantastic results. I wonder if that was you? Was there any pain with recovery or down time?"
My repost back to her. "The woman had to have been me. I'm the only one they have done. People don't feel their heartbeats. People don't have to concentrate to try to force their dumb hearts to slow down. Other people don't have to consider every move they make because of their stupid heart.
I was on oxygen for months at home before they did this. I was in my bed unable to move. Walking 50 foot could get my heartrate to 160. It was nuts. None of the drugs worked. I was passing out. It sucked"
I knew having Inappropriate Sinus Tachycardia was extremely rare. Our severity level was also exceeding rare. If it's one place I don't want to be told I am unique it's in a top rated heart hospital. So we had each other. No one else in the world like us and we actually met. It was amazing. Made things much less scary (for me anyway.) So we made the journey together and answered questions the docs asked together. (In the same room at the same time.) They said each of our hearts are a one in a million. So the odds of us being in the same room was mind boggling to them. Plus, we found each other without them putting us together. Because my mother did not tell me not to meet people from the internet! Some things are just meant to be. We decided to work together to help the doctors learn from us FASTER. Because time was of the essence. Before we went into heart failure. We've been through experimental surgeries, open heart, and getting pacemakers installed together all in one year. Hard to complain when you have someone else who knows EXACTLY how you feel staring at you. She yelled at me to stop Hip Hop dancing in the cardiac unit and I yelled at her to come walk with me after her surgery when it hurts like hell to take a breath.
I didn't have any other options at the time so when the docs came to me with their new fangled plan I told them to book the surgery. They said they hadn't tried this surgery on ANYONE. I'd be the first heart patient to get it for tachycardia. They brought me a journal article about the surgery on a guy FOR ANOTHER ISSUE and that dude died. But Jeremy (my husband) and I decided we had no other choice. Sometimes you don't have journal articles to study or patient outcomes to read. Sometimes you have to go with your gut feeling. I trusted this doctor and knew he wouldn't let me die. Not because I had proof. Because I had FAITH.
So I took a leap and offered myself up in the name of science. We went into the OR and they put me to sleep and put my head on a block. While asleep they injected pain killers and steroids into my spine into a bundle of nerves called the stellate ganglion. This is an extremely small target to hit. They used an ultrasound to identify the tiny area while using a huge needle in my spine. One miscalculation and I'd have a heart attack or stroke. They injected one side then woke me up. I talked immediately to make sure I didn't have a stroke. But then 3 days later they injected the other side. Like magic they "reset" my sympathedic nervous system. We knew it worked because my hand on the side they injected got to 110 degrees. 13 degrees hotter than the other side. That part was temporary. But meant we hit our target. Nurses and doctors kept coming by for 3 hours to hold my hand and feel the effects of the surgery. It was a miracle in the making.
The "reset" of my heart had been achieved so I had to retrain my heart. In the gym. 2 hours a day. Being careful to not overdo moving quickly or my heart would speed up again. I got on a elliptical and cried. I took a picture of my heart rate and sent it to my parents. Because we achieved something I didn't think was possible. I moved and didn't pass out.
April has been right by my side the entire year. For every surgery, every problem, every complication. She's pulled me up while I was screaming with a chest tube in my lung in the ICU. She's laughed as I brushed my teeth five thousand times. (I have a problem ya'll. I like clean teeth. Don't judge me.) I didn't realize how many times I brushed my teeth until I brushed April's teeth in the ICU when she had surgery. Because good friends do that for each other. Good friends support each other in crisis. It doesn't mean anything if you are only there for the fun times. It matters when you sit through the bad ones too. So many family and friends have stepped up to help me. I'll write more about them later! The support I've been lucky to have received is humbling. I have a heart twin. Her name is April.
Repost from the original site where we met. "Jen, my doctors want to do this for me too. Does insurance cover this? People dont feel their heartbeat? Do they think about every breath they take? I heard my doc did this for one other woman with fantastic results. I wonder if that was you? Was there any pain with recovery or down time?"
My repost back to her. "The woman had to have been me. I'm the only one they have done. People don't feel their heartbeats. People don't have to concentrate to try to force their dumb hearts to slow down. Other people don't have to consider every move they make because of their stupid heart.
I was on oxygen for months at home before they did this. I was in my bed unable to move. Walking 50 foot could get my heartrate to 160. It was nuts. None of the drugs worked. I was passing out. It sucked"
I knew having Inappropriate Sinus Tachycardia was extremely rare. Our severity level was also exceeding rare. If it's one place I don't want to be told I am unique it's in a top rated heart hospital. So we had each other. No one else in the world like us and we actually met. It was amazing. Made things much less scary (for me anyway.) So we made the journey together and answered questions the docs asked together. (In the same room at the same time.) They said each of our hearts are a one in a million. So the odds of us being in the same room was mind boggling to them. Plus, we found each other without them putting us together. Because my mother did not tell me not to meet people from the internet! Some things are just meant to be. We decided to work together to help the doctors learn from us FASTER. Because time was of the essence. Before we went into heart failure. We've been through experimental surgeries, open heart, and getting pacemakers installed together all in one year. Hard to complain when you have someone else who knows EXACTLY how you feel staring at you. She yelled at me to stop Hip Hop dancing in the cardiac unit and I yelled at her to come walk with me after her surgery when it hurts like hell to take a breath.
I didn't have any other options at the time so when the docs came to me with their new fangled plan I told them to book the surgery. They said they hadn't tried this surgery on ANYONE. I'd be the first heart patient to get it for tachycardia. They brought me a journal article about the surgery on a guy FOR ANOTHER ISSUE and that dude died. But Jeremy (my husband) and I decided we had no other choice. Sometimes you don't have journal articles to study or patient outcomes to read. Sometimes you have to go with your gut feeling. I trusted this doctor and knew he wouldn't let me die. Not because I had proof. Because I had FAITH.
So I took a leap and offered myself up in the name of science. We went into the OR and they put me to sleep and put my head on a block. While asleep they injected pain killers and steroids into my spine into a bundle of nerves called the stellate ganglion. This is an extremely small target to hit. They used an ultrasound to identify the tiny area while using a huge needle in my spine. One miscalculation and I'd have a heart attack or stroke. They injected one side then woke me up. I talked immediately to make sure I didn't have a stroke. But then 3 days later they injected the other side. Like magic they "reset" my sympathedic nervous system. We knew it worked because my hand on the side they injected got to 110 degrees. 13 degrees hotter than the other side. That part was temporary. But meant we hit our target. Nurses and doctors kept coming by for 3 hours to hold my hand and feel the effects of the surgery. It was a miracle in the making.
The "reset" of my heart had been achieved so I had to retrain my heart. In the gym. 2 hours a day. Being careful to not overdo moving quickly or my heart would speed up again. I got on a elliptical and cried. I took a picture of my heart rate and sent it to my parents. Because we achieved something I didn't think was possible. I moved and didn't pass out.
April has been right by my side the entire year. For every surgery, every problem, every complication. She's pulled me up while I was screaming with a chest tube in my lung in the ICU. She's laughed as I brushed my teeth five thousand times. (I have a problem ya'll. I like clean teeth. Don't judge me.) I didn't realize how many times I brushed my teeth until I brushed April's teeth in the ICU when she had surgery. Because good friends do that for each other. Good friends support each other in crisis. It doesn't mean anything if you are only there for the fun times. It matters when you sit through the bad ones too. So many family and friends have stepped up to help me. I'll write more about them later! The support I've been lucky to have received is humbling. I have a heart twin. Her name is April.
Jenny
Jenny- A little bit about me....
I'm Jenny. I laugh so hard I can't talk, smile too much, I try to have fun whenever I go and I spent all 4 years of college on roller skates. I am 35 a wife and mother of 2 beautiful kids, I'm kinda obsessed with index cards, and I'm a heart patient. Try not to be jealous. I'm the friend you take with you at 3am to test out all the noise making devices during Christmas in Wal-Mart. I think sometimes you need to actively decide to live, not just be alive, but live.
Heart disease is not all I am, it's something I have. I've been fighting with my heart since I was 18. I'm alive because I refuse to die. I've had 9 heart surgeries/procedures. I have a pacemaker named "Bob." Bob is freaking awesome. So bring it on. Sign me up. Life is what you make of it. So things happen sometimes. Why? I'm still working on that part. But I'm pretty sure I'm here to teach people about adversity and heart disease. I also am pretty sure I'm supposed to bring gansta rap to the hospital. Because those people need a little gansta rap in their lives. The hospital is boring, yo.
So how do I know my writing cohorts? I met Monique through mutual friends in high school and we met back up in college. I met Perky in high school. Both of them laugh at my jokes and don't question me when I say stuff like, "Let's get up in the middle of the night and look for fireflies." So we get along just perfect. Both of them have pulled me through some pretty bad situations all while maintaining awesome abilities to make me laugh. Sometimes you have to dig deep and find your strength within you and sometimes you need someone to tell you it will all be okay.
I'm like one thing away from writing a fantastic country song. My dog died, I got a pacemaker at 35, and I haven't seen my baby in 7 weeks. But I'm on the upswing people. I'm ready to raise hell again.
Jenny
Heart disease is not all I am, it's something I have. I've been fighting with my heart since I was 18. I'm alive because I refuse to die. I've had 9 heart surgeries/procedures. I have a pacemaker named "Bob." Bob is freaking awesome. So bring it on. Sign me up. Life is what you make of it. So things happen sometimes. Why? I'm still working on that part. But I'm pretty sure I'm here to teach people about adversity and heart disease. I also am pretty sure I'm supposed to bring gansta rap to the hospital. Because those people need a little gansta rap in their lives. The hospital is boring, yo.
So how do I know my writing cohorts? I met Monique through mutual friends in high school and we met back up in college. I met Perky in high school. Both of them laugh at my jokes and don't question me when I say stuff like, "Let's get up in the middle of the night and look for fireflies." So we get along just perfect. Both of them have pulled me through some pretty bad situations all while maintaining awesome abilities to make me laugh. Sometimes you have to dig deep and find your strength within you and sometimes you need someone to tell you it will all be okay.
I'm like one thing away from writing a fantastic country song. My dog died, I got a pacemaker at 35, and I haven't seen my baby in 7 weeks. But I'm on the upswing people. I'm ready to raise hell again.
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