To start things off, I have added a very short summary for those who don't feel like reading this lengthy post. It seems like a lot of writing, well, because it is, but that is because so much was learned this past weekend. So if you want a short, one paragraph summary, jump to the bottom, and it will be there waiting for you. Otherwise, sit back, take your time, enjoy, and I hope you learn something!
Friday the 13th was the weekend of the 12th annual ARVD seminar. The actual seminar was on Saturday, but that Friday I had an appointment with Dr.Tandri, who is Dr.Hugh Calkins partner, the head of cardiology. Dr.Tandri is the one that performs all of the ablations, more importantly the epicardial ablation. He is also the one who has perfected the art of reading MRI's of the right ventricle.
One of the main reasons for my first visit to Johns Hopkins was to seek a diagnosis, which due to false readings of my MRI, my disease remained a mystery. But thanks to Dr.Tandri, he successfully read the MRI of my Right Ventricle, saw that it was enlarged and that there was indeed scarring of the tissue, sealing the deal for my diagnosis. So this time, when I went back up to Baltimore, I had a chance to meet with him and discuss the ins and outs of an epicardial ablation and how it is different from the previous two ablations I have had, which are referred to as endocardial ablations.
The ARVD team at Johns Hopkins and I decided not to go through with the ablation for at least another six months if not longer because my medicine was keeping my heart stable, and it is a rather major procedure. But the day after we decided that, I was hanging out with some friends in Columbia,SC when my defibrillator went off and proceeded to shock me four times. That following Monday, I called Johns Hopkins to explain what happened and that is when we decided to go through with the surgery.
The epicardial ablation has been being performed for only four years, therefore, long term success of the procedure is unknown. However, short-term success is very promising. So far recurrence of V-Tach is very limited and usually only starts to show after the third year if at all. Completion of the procedure will allow my medicine to be drastically reduced, which will also contribute to re-energizing my body and feeling healthier.
This ablation is different from the other two because of the area where the cells will be burned. The previous two ablations just targeted faulty cells inside the heart, where the epicardial ablation will focus mainly on the outside of the heart as well as the inside. The first two ablations, endocardial ablations, just used one catheter, inserted through the groin, which then maneuvered up to the inside of my heart that burned the cells produced from the scarring which caused the V-Tach. With this fairly new procedure, the epicardial ablation, there are two catheters used. It is basically an endocardial ablation, along with another catheter inserted right under the sternum which will be used to burn cells on the outside of the heart, which is where most of the fat cells and scarring infiltrates. The doctors use a GPS device to map the heart piece by piece, using colored dye to find the faulty cells. This is a very lengthy procedure that takes around six hours. The doctors will keep burning the cells in the scarred tissue until none are left. If he finds there are still cells causing arrhythmias at the end of the procedure, then he will continue until he feels as though he has rid the heart of all the bad cells.
Another thing I learned is that the cells cannot reproduce once they are burned(killed) because the heart is done growing. Once they are dead, they are gone. The reason the other two ablations did not work is because most of the arrhythmias are associated with cells from the scarring on the outside of the heart, which is what this ablation will tackle. I will be in the hospital from one to three nights depending on the amount of burning that my heart incurs. When the cells are being burned, they are resting on top of the heart right under the lining that surrounds the heart. If they have many areas to burn they could potentially burn the skin that surrounds the heart, which causes severe pain, known as Pericarditis. So because of this they drug you up real good and then just wait and see what happens. Some feel the effects intensely and others don't at all, it really all depends how much burning goes on.
But the end goal of this surgery is to resume recreational sports and lower my medication. Athletics is still the kryptonite to this disease, but this ablation will hopefully be able to get me back to swimming once in awhile, or on top of a mountain a few times a summer, or in a kayak in the middle of the lake, or even on a field tossing a frisbee. I should be able to exercise enough to stay fit and healthy, but no more than that. Basically this ablation will allow me to do the bare minimum to get in shape, which now is more than I could ask for. Right now, I can't walk up a flight of steps without tiring. So Johns Hopkins is in the midst of scheduling the ablation, and I am very excited for that. I am not setting any expectations as in my journey so far I have seemed to keep falling in that .1% where everything goes wrong. I remain hopeful, but I also know that things don't always work out as planned, but I am very excited to be having this done.
Now regarding the seminar, it was an all day event Saturday, very informative and interesting, and I'm glad I made it up there. Dr. Hugh Calkins did a general overview of ARVD, introduced each speaker, and kept the timeline running smoothly. Dr. Tandri, who will be performing my epicardial ablation, spoke about the procedure and how they have had much success with it. Then there was Dr. Jeff Saffitz, a leading pathologist from Beth Israel Deaconess Medical Center in Boston, Massachussettes, which is a teaching hospital of Harvard. He is also the Chairman of the Department of Pathology at the Harvard Medical School. Most of his presentation was about genes and their mutations and cardiomyopathy. He went very in depth in to the type of genes involved in heart disease, and the common mutated genes found in ARVD (PKP2), and spoke on current research findings. Many doctors and labs are now actively researching this disease and making major progress, receiving grants, even winning awards, and now pairing up with researchers from abroad to try and discover what exactly causes this, what makes it worse, and new curative measures for the disease. The seminar had a lot of information to take in, but it was all very intriguing.
Later was Dr.Samuel Sears, Professor and Director of Health Psychology at East Carolina University. I enjoyed listening to him the most. Although he was a physchologist, he also has studied up in the medical field and was well informed regarding any health and heart questions. He was a well spoken, charismatic guy, who threw in some humor, and just had a lot of good stuff to say in general. I would have loved to have him as a professor. He was speaking about how family members, not just the ones with the disease, are affected by the disease and how to cope with it, and then he went into family being the support team for one another largely based on communication. He also showed statistics of partners, the ones without ICD's, being equally anxious and scarred of living with a defibrillator. His main focus in his practice, is in regards to post traumatic stress syndrome of people who have been shocked by their ICD's and also dealing with their general anxieties of living with such a device, which I found very interesting. I never knew people counseled others just regarding their ICD's, but after being shocked, I can see how someone would have such emotional trauma. I was a little apprehensive, the following day, after leaving the hospital when I was shocked, fearing I would be shocked again. Then I realized you cannot live in fear of the device, you cannot let it have such control over your mind, but the memory replays in my mind over and over and the thought of recurrance is almost daily. It's a mind game, and I would like to believe I have the mental capabilities to free my mind and find peace.
After the professionals spoke, three people got up to share there stories. One was the father to a son with the disease who was now in college. One was a man of the age of 76 who was diagnosed in 1999, when the disease was first discovered. Subsequently, he had been shocked around 84 times since then by his ICD. He was a college professor himself that once fought in the Korean War, and said speaking during this seminar was the hardest speech he has ever given out of the thousands in his life. And the other one was a marathon runner who was just recently diagnosed, holds a record for the 400m hurdle at Purdue, and is trying to figure out what to do with his life now that running is not an option. He is in his 40's and has spent his whole life running, everyday, all day. Last year it was reduced to simple jogs but this past January he was shocked by his ICD while out for a jog, so now his challenge is to find another passion, another love for life. And that is the hard part for most of us with this disease. Most of us are avid athletes, who have spent the majority of our lives doing something involving sports and activity, and now it has been taken from us. Being active and physical is such a natural thing, that it is hard to cope with the idea of not getting to enjoy the lifestyle we were so accustomed to.
But many questions remain, and that is why Hopkins is actively delving deeper into the genetic characteristics and implications of the disease. Over the last 5 years great strides have been made in understanding the genetic cause of ARVD. We now understand that in many cases, ARVD is a desease of the cardiac desmosome. The desmosome is the structure that holds heart muscle cells together. Much still needs to be done to better understand how, when, and why the desmosomes fail in ARVD and to develop treatment for patients and family members. Just a week ago they discovered a way to take a cell from your arm, grow it and transform it within a petri dish and eventually change it into a cardiac cell which will then produce a heartbeat. They showed us a video of one of these transformed cells in a petri dish beating, and it was pretty incredible.
Just an interesting side note of something else I learned in the seminar. I learned they refer to the person in the family who first seeks medical treatment for a condition the proband. That would be me, I'm the proband. The proband, in relation to ARVD, has a high percentage rate of sudden cardiac death. I was very lucky to be spared such a thing, although I came very close when I went into cardiac arrest last October. But not only was I lucky that one time, as Dr.Calkins told me, I could have easily died any one of the many times I had a syncope episode (passed out). So in reality, I was spared death many a time. Also in hearing others' stories during the seminar, there were a few widow(ers) who had stories of their spouses dying from the first or second time they passed out, so I am just thankful to be breathing and walking. I also met a younger fellow who gave bad advice to another person who was even younger than he was. His words, "THIS SUCKS." I put that in all Caps because he said it with such emphasis. But many things in life suck, and this is just one of them, but there are much worse diseases to be had and many worse situations to be in, and I was very taken back and slightly annoyed/angered by his advice to such a young person dealing with this disease. It is a rare heart disease and I think we should support one another, not the opposite. Anyways, I learned many things from this seminar and I am looking forward to this ablation and hoping to be physically active, at least just a little, by the end of the summer. There is always Hope. I never really thought that, but I certainly do now! Enjoy your days!
Quick Summary:
I will be having my 3rd ablation, which is different from the previous two and considered major surgery. It is in the works but hopefully will happen sometime within the next two months. We decided to go through with this since I was shocked four times by my ICD a couple of weeks ago. Also, I attended the 12th annual ARVD seminar and learned a great deal, and heard from some leading doctors from across the nation, and shared stories with other families afflicted with this disease. Then I flew home and wrote this post for you to read.
Wednesday, May 18, 2011
Wednesday, April 27, 2011
Discovering New Music
So I've decided to share new music I find with whomever decides to read my blog. You may or may not like any of the bands, and you may only like one out of the many I post. But if you have the time, they are all worth checking out. I have an eclectic taste in music, so most people should be able to find at least one musician they find interesting on here. There will be more postings to come showcasing underground artists, new or old, because good music deserves to be heard and shared around the world. And I will be posting entries fairly often as to not be overwhelmed by too many artists as I was this time. Below shows only a few artists I have recently discovered out of the many, but these were the ones that are really starting to hit the scene and make an impact with their music.
I have also discovered a website that is very useful in seeing who these bands are, called MusicTonic.com. It is like Pandora, YouTube, and Grooveshark all rolled in to one with added features that makes browsing very convenient and discovering new music and catching videos very easy. So check it out, Musictonic.com. Jukesy,com is also convenient in viewing videos of artists and catching all of their songs and even discovering new music, but MusicTonic is a better version of that.
Now, I've never been too good at describing music, but below I have tried to the best of my ability to give a brief description of the sound of the artist, including artists that might relate. I also included a couple of songs of each artist that I believe are the most popular or that best summarizes the artists' sound. As my friend Bob once said, "I don't know anything about music, I just get it when it hits me."
So like I said, I recommend checking these musicians out on MusicTonic.com.
NEW MUSIC I FOUND:
Matt & Kim: Similar to Crystal Castles, Passion Pit, and Vampire Weekend. 2 person band made up of brother and sister. Kim plays drums while Matt plays the Keys. Pretty good show, awesome energy.
Songs: Daylight, Good Ol' Fashion Nightmare, Don't Slow Down
Foster The People: Vocals are very similar to MGMT. Also a little similar to Vampire Weekend and Edward Sharpe & The Magnetic Zeros. They only have a 3 song EP album out right now, but those 3 songs are very good. If you like MGMT, then you will like these guys.
The Temper Trap: Similar to Edward Sharpe & The Magnetic Zeros and The Band of Horses. High pitched vocals similar to Passion Pit. Music in the refrains a little similar to Keane. Lead vocal is an upbeat version of the Fleet Foxes.
Songs: Sweet Disposition, Resurrection, Love Lost
Two Door Cinema Club: Alternative Indie Rock, with elements of Electronica. From Northern Ireland,. Similar to Friendly Fires with a touch of Phoenix in their sound.
Songs: What You Know, Something Good Can Work
Lissie: Indie folk music. Strong vocals similar to Adele. Also similar to Feist and Sara Bareilles (although not as Poppy). Has an undertone of old-fashioned country in her slow songs
Laura Marling: Plays acoustic guitar, has a husky voice, Mumford & Sons style folk songs. Received Best female solo artist brit 2011 award. Mumford & Sons actually just did a collaboration with her.
Timmy Curran: Plays acoustical guitar and writes slower songs. Similar to Amos Lee, Brett Dennen, Griffin House, Sufjan Stevens.
Three Legged Fox: Rock music with a Reggae vibe. Strong vocals. Similar to The Movement, G.Love, and Pepper, with a touch of Ben Harper soul and Widespread Panic rock to them.
Simplified: Guitar style is very similar to O.A.R. and lead vocals are similar to Darius Rucker from Hootie & The Blowfish but a little higher. Sings like Cas Haley. Could be grouped with Slightly Stoopid, Barefoot Truth, Benjy Davis Project. A little undertones from Hootie & The Blowfish.
Songs: Wake 'n Bake, Don't Change, Uh-Huh
The Dirty Heads: California Reggae mixed with some light rock and some fast rhymes mixed up with some slow refrains. Similar to Michael Franti & Spearhead, Pepper (but less rockish), and Slightly Stoopid. Recorded with Rome Ramirez of Sublime.
Mattafix: Hip Hop with an electronic twist. It's like Gorillaz meets Matisyahu. Male and Female vocalist.
Songs: Big City Life, Things Have Changed, Living Darfur
Oh Land: Indie/Electronica. Female lead vocalist, who before teaming with producers, made her own contraption at home that looped her voice to record her first songs. She was literally a one-woman band.She is so talented she can do limitless things with her voice, whether it beat boxing or laying down futuristic techno beats. She uses her voice as a real instrument.
Ladysmith Black Mambazu: African music they call Zulu. Very light and relaxing, this is the band that Paul Simon features in some of his music (Graceland), very good stuff. The band sings in both English and their native tongue. They do a good cover of Knockin on Heaven's Door and one recorded with Dolly Parton.
Songs: Homeless, Amabutho (Warriors), Sisesiqhingini (Everything Is So Stupid... Stupid... Stupid)
Bands you should already know and be listening to that are fairly new but totally OFF THE CHARTS:
Florence + The Machine
Edward Sharpe & The Magnetic Zeros
Brett Dennen (not that new, but still not very well known)
Fleet Foxes
Company of Theives
Cas Haley
Sean Hayes
I have also discovered a website that is very useful in seeing who these bands are, called MusicTonic.com. It is like Pandora, YouTube, and Grooveshark all rolled in to one with added features that makes browsing very convenient and discovering new music and catching videos very easy. So check it out, Musictonic.com. Jukesy,com is also convenient in viewing videos of artists and catching all of their songs and even discovering new music, but MusicTonic is a better version of that.
Now, I've never been too good at describing music, but below I have tried to the best of my ability to give a brief description of the sound of the artist, including artists that might relate. I also included a couple of songs of each artist that I believe are the most popular or that best summarizes the artists' sound. As my friend Bob once said, "I don't know anything about music, I just get it when it hits me."
So like I said, I recommend checking these musicians out on MusicTonic.com.
NEW MUSIC I FOUND:
Matt & Kim: Similar to Crystal Castles, Passion Pit, and Vampire Weekend. 2 person band made up of brother and sister. Kim plays drums while Matt plays the Keys. Pretty good show, awesome energy.
Songs: Daylight, Good Ol' Fashion Nightmare, Don't Slow Down
Foster The People: Vocals are very similar to MGMT. Also a little similar to Vampire Weekend and Edward Sharpe & The Magnetic Zeros. They only have a 3 song EP album out right now, but those 3 songs are very good. If you like MGMT, then you will like these guys.
Songs: Pumped Up Kicks, Houdini, Helena Beat
Songs: Sweet Disposition, Resurrection, Love Lost
Two Door Cinema Club: Alternative Indie Rock, with elements of Electronica. From Northern Ireland,. Similar to Friendly Fires with a touch of Phoenix in their sound.
Songs: What You Know, Something Good Can Work
Lissie: Indie folk music. Strong vocals similar to Adele. Also similar to Feist and Sara Bareilles (although not as Poppy). Has an undertone of old-fashioned country in her slow songs
Songs: Little Lovin', Look Away, Everywhere I Go
Laura Marling: Plays acoustic guitar, has a husky voice, Mumford & Sons style folk songs. Received Best female solo artist brit 2011 award. Mumford & Sons actually just did a collaboration with her.
Songs: Devil's Spoke, Rambling Man
Timmy Curran: Plays acoustical guitar and writes slower songs. Similar to Amos Lee, Brett Dennen, Griffin House, Sufjan Stevens.
Songs: Daylight's Comin', Comatose
Three Legged Fox: Rock music with a Reggae vibe. Strong vocals. Similar to The Movement, G.Love, and Pepper, with a touch of Ben Harper soul and Widespread Panic rock to them.
Songs: Easier Way, Maybe I'm Sorry
Simplified: Guitar style is very similar to O.A.R. and lead vocals are similar to Darius Rucker from Hootie & The Blowfish but a little higher. Sings like Cas Haley. Could be grouped with Slightly Stoopid, Barefoot Truth, Benjy Davis Project. A little undertones from Hootie & The Blowfish.
Songs: Wake 'n Bake, Don't Change, Uh-Huh
The Dirty Heads: California Reggae mixed with some light rock and some fast rhymes mixed up with some slow refrains. Similar to Michael Franti & Spearhead, Pepper (but less rockish), and Slightly Stoopid. Recorded with Rome Ramirez of Sublime.
Songs: Lay Me Down, Stand Tall
Mattafix: Hip Hop with an electronic twist. It's like Gorillaz meets Matisyahu. Male and Female vocalist.
Songs: Big City Life, Things Have Changed, Living Darfur
Oh Land: Indie/Electronica. Female lead vocalist, who before teaming with producers, made her own contraption at home that looped her voice to record her first songs. She was literally a one-woman band.She is so talented she can do limitless things with her voice, whether it beat boxing or laying down futuristic techno beats. She uses her voice as a real instrument.
Songs: Son Of A Gun, Wolf & I, Perfection, Heavy Eyes
La Roux: Good dance beats, female vocalist, similar to Lady GaGa but more techno. This is good club music by far.
Songs: Bulletproof, Quicksand
Snarky Puppy: Jazz band out of North Texas in Denton. Have toured SC and got rave reviews. If you like jazz then you'll probably dig them. (Darce's actually played with one of the guitarist) Good keys, nice sax. Slight MMW vibe.
Songs: Ready Wendsday, The World is Getting Smaller
Ladysmith Black Mambazu: African music they call Zulu. Very light and relaxing, this is the band that Paul Simon features in some of his music (Graceland), very good stuff. The band sings in both English and their native tongue. They do a good cover of Knockin on Heaven's Door and one recorded with Dolly Parton.
Songs: Homeless, Amabutho (Warriors), Sisesiqhingini (Everything Is So Stupid... Stupid... Stupid)
Bands you should already know and be listening to that are fairly new but totally OFF THE CHARTS:
Florence + The Machine
Edward Sharpe & The Magnetic Zeros
Brett Dennen (not that new, but still not very well known)
Fleet Foxes
Company of Theives
Cas Haley
Sean Hayes
Thursday, April 21, 2011
ARVD IT IS!!!
So I am officially diagnosed with ARVD. The trip to Baltimore proved to be a success in the fact that I am now diagnosed and no longer left in the dark wondering. When I first arrived to my appointment I was given an EKG, and a Holter Monitor to wear for 24 hours. Then I met with the lead researcher Brittany Dye, and the lead geneticist to discuss ARVD and the future outlook of the disease. The first hour was spent answering questions they had for me, to fill them in on any blanks they might of had, and to catch them up on my situation and why I was there. The two of them spent the second hour explaining ARVD in detail, and that is when they confirmed I had the disease. I had not yet been diagnosed with ARVD because my MRI kept being read as normal. Apparently, there are only a handful of doctors in the US who have the ability to read an MRI of the Right Ventricle correctly. So the doctors of John Hopkins did in fact see deterioration of the heart, and that combined with my other symptoms led the ARVD team to officially diagnose me with the disease.
After speaking with the two of them for a couple of hours, I then met with the head of Cardiology and ARVD, Dr. Hugh Calkins. He categorized my disease as being a moderate case, falling right under severe. He reassured me that his team would do everything in their power to prevent a heart transplant for as long as possible. Most people with ARVD who have heart transplants don't need them until they are in their 40's, but my disease has progressed pretty far for such a young age making it possible that I may need a transplant before I hit 40. In the majority of ARVD cases, patients usually aren't even diagnosed until their late 30's or early 40's, but at the same time it is a disease that can be caught at the age of 7 or 75. And it's a disease that interferes with some peoples lives but never bothers the next. It has certainly interfered with mine, so my next option will be to undergo a third ablation. It is called an Epicardial ablation and considered major surgery so I will undergo general anesthesia, whereas in previous ablations I was awake for the majority of the operation.
During an Epicardial ablation, two catheters are used instead of one to race the heart in hopes of pinpointing the faulty areas of the heart. Heat waves are then used to burn off any of those faulty areas. One catheter enters through the groin, maneuvers up to the heart, and attacks the inside of it, while the other catheter enters through the chest and attacks the outside of the heart. The procedure has a high success rate, and since I am not content with my current state, I am opting to get this done as soon as possible. Dr.Calkins will decide if I am eligible for the Epicardial ablation based upon the results of the Holter Monitor. The purpose of the heart monitor is to read how well the medicine is controlling my heart. If the results aren't enough to decide upon the ablation, I will then wear a second monitor, an Active Heart Monitor. That monitor will be worn for at least a week to record more information. So within the next month or so we should have a better idea of whether I will be going through with the third ablation or not.
After I saw the doctor, before I left the hospital, I had my blood drawn. ARVD is a genetic disease, so the researchers at John Hopkins are going to study my DNA to try and find the mutated gene. Only in the past five years have they been able to find genes in the DNA that cause this disease. That goes to show you how rare and new the research is. Only 50% of the cases are they able to find the gene that is causing the disease, and if they are able to find it then they can try and determine what side of the family it came from, whether it came from my mother's side or my father's. If they do in fact discover what side of the family the disease came from, then my first cousins will also have to be tested. But my brother will be next to have his DNA examined, due to the fact the gene could have easily been passed on to him as well. If they find signs of the disease they will require him to abandon all physical activity as well, if they are unable to find any mutated genes than they will allow him to continue on as normal, keeping a close eye on him.
Not only is ARVD genetic, it is also a progressive disease that contains two central parts. The first part is the racing of the heart, tachycardia, which is the Arrythmogenic part. The second part is an enlarged right ventricle and deterioration of the muscle cells turning into scar tissue and fat cells within the right ventricle, the Right Ventricle Dysplasia part. Physical activity is the kryptonite to this disease, and will progress the disease more rapidly than anything else, so from here on out I will no longer be aloud to exercise. The doctors explained it as faulty super glue. When the heart pumps, it expands and contracts. When you have ARVD, after the heart expands it doesn't always contract and that causes tacychardia and scaring of the tissue. After so many times, it will cause the heart to go into cardiac arrest and heart failure resulting in sudden death. The doctor said I was very lucky to still be alive, that I could have passed away during any one of my syncopal episodes. Reflecting upon my situation, I am very grateful that I am still able to breath this air, and walk this ground knowing ARVD is attributed to at least 25% of sudden deaths in student athletes.
As backwards as it sounds, exercise is killing me and always has been. Physical activity will now have to be limited to simple walking or playing golf, although I was told I could go skiing once in a blue moon. It is hard to imagine that for the rest of my life I will no longer be able to participate in any kind of physical activity. I will never be able to go kayak a river, or go for a run on a beach, go swimming or get to play a pick up game of basketball, frisbee, or soccer. I can't even play tennis or racquetball. Sports has always been part of my life, it is something that came natural to me, something I was good at. Life for me is completely different now and it hasn't hit home quite yet. The task for me will be to not focus on the things I can't do but the things that I can.
So now I have decided to focus my time and energy on learning new hobbies that include the game of golf, the practice of yoga, playing guitar and cooking healthy dishes with local ingredients. I will also pick back up my favorite game of disc golf, that is, as long as it doesn't boost my heart rate too much.Of course I still have my other hobbies as well that I have picked up during my six months of idleness, such as my increased time for writing and reading, discovering new music, and my various art projects.
In less than one month from now, I will be returning to Baltimore to attend an ARVD seminar. It will give me an opportunity to learn about the new research associated with the disease, and it will also give me a chance to meet other people my age that are going through this. John Hopkins, who specializes in the disease, only has 400 patients in their registry. That includes people, like me, from other parts of the country. Out of millions and millions that live in this country, that is a very small percent of the population who have been diagnosed with this disease; 400 was the size of my graduating high school class. And like I said before, this disease is rare in younger folks so there probably won't be too many people my age with the disease, but I believe the seminar will be good for me. Many people who are diagnosed with ARVD were once very athletic. My goal will be to figure out how they coped with the daily restraints of physical activity and discuss the things they do to stay healthy.
This new life I am living is completely opposite than what I once knew. All it takes is a couple of hours and some unusual overwhelming events to suddenly and drastically change a person's life. But as Victor Frankl once said, "When we are no longer able to change a situation, we are challenged to change ourselves." So because I cannot change my situation, I will be forced to change the person I am. I have decided to use this time to work on myself. To self reflect and attempt to better my mind and soul. The past couple of years I was moving through life a little too fast with not enough thought. Don't get me wrong, I was living life to the fullest with no worries, having the time of my life, but I wasn't pausing to fully embrace myself in the moment. I once was told 'if nothing ever changed, we'd have no butterflies'; but change does happens. So I have to believe something good will come of this or if nothing else, I have to create the good, for time is the greatest innovator. I just make sure to always remind myself that 'It could always be worse!!!'
So that's that!
After speaking with the two of them for a couple of hours, I then met with the head of Cardiology and ARVD, Dr. Hugh Calkins. He categorized my disease as being a moderate case, falling right under severe. He reassured me that his team would do everything in their power to prevent a heart transplant for as long as possible. Most people with ARVD who have heart transplants don't need them until they are in their 40's, but my disease has progressed pretty far for such a young age making it possible that I may need a transplant before I hit 40. In the majority of ARVD cases, patients usually aren't even diagnosed until their late 30's or early 40's, but at the same time it is a disease that can be caught at the age of 7 or 75. And it's a disease that interferes with some peoples lives but never bothers the next. It has certainly interfered with mine, so my next option will be to undergo a third ablation. It is called an Epicardial ablation and considered major surgery so I will undergo general anesthesia, whereas in previous ablations I was awake for the majority of the operation.
During an Epicardial ablation, two catheters are used instead of one to race the heart in hopes of pinpointing the faulty areas of the heart. Heat waves are then used to burn off any of those faulty areas. One catheter enters through the groin, maneuvers up to the heart, and attacks the inside of it, while the other catheter enters through the chest and attacks the outside of the heart. The procedure has a high success rate, and since I am not content with my current state, I am opting to get this done as soon as possible. Dr.Calkins will decide if I am eligible for the Epicardial ablation based upon the results of the Holter Monitor. The purpose of the heart monitor is to read how well the medicine is controlling my heart. If the results aren't enough to decide upon the ablation, I will then wear a second monitor, an Active Heart Monitor. That monitor will be worn for at least a week to record more information. So within the next month or so we should have a better idea of whether I will be going through with the third ablation or not.
After I saw the doctor, before I left the hospital, I had my blood drawn. ARVD is a genetic disease, so the researchers at John Hopkins are going to study my DNA to try and find the mutated gene. Only in the past five years have they been able to find genes in the DNA that cause this disease. That goes to show you how rare and new the research is. Only 50% of the cases are they able to find the gene that is causing the disease, and if they are able to find it then they can try and determine what side of the family it came from, whether it came from my mother's side or my father's. If they do in fact discover what side of the family the disease came from, then my first cousins will also have to be tested. But my brother will be next to have his DNA examined, due to the fact the gene could have easily been passed on to him as well. If they find signs of the disease they will require him to abandon all physical activity as well, if they are unable to find any mutated genes than they will allow him to continue on as normal, keeping a close eye on him.
Not only is ARVD genetic, it is also a progressive disease that contains two central parts. The first part is the racing of the heart, tachycardia, which is the Arrythmogenic part. The second part is an enlarged right ventricle and deterioration of the muscle cells turning into scar tissue and fat cells within the right ventricle, the Right Ventricle Dysplasia part. Physical activity is the kryptonite to this disease, and will progress the disease more rapidly than anything else, so from here on out I will no longer be aloud to exercise. The doctors explained it as faulty super glue. When the heart pumps, it expands and contracts. When you have ARVD, after the heart expands it doesn't always contract and that causes tacychardia and scaring of the tissue. After so many times, it will cause the heart to go into cardiac arrest and heart failure resulting in sudden death. The doctor said I was very lucky to still be alive, that I could have passed away during any one of my syncopal episodes. Reflecting upon my situation, I am very grateful that I am still able to breath this air, and walk this ground knowing ARVD is attributed to at least 25% of sudden deaths in student athletes.
As backwards as it sounds, exercise is killing me and always has been. Physical activity will now have to be limited to simple walking or playing golf, although I was told I could go skiing once in a blue moon. It is hard to imagine that for the rest of my life I will no longer be able to participate in any kind of physical activity. I will never be able to go kayak a river, or go for a run on a beach, go swimming or get to play a pick up game of basketball, frisbee, or soccer. I can't even play tennis or racquetball. Sports has always been part of my life, it is something that came natural to me, something I was good at. Life for me is completely different now and it hasn't hit home quite yet. The task for me will be to not focus on the things I can't do but the things that I can.
So now I have decided to focus my time and energy on learning new hobbies that include the game of golf, the practice of yoga, playing guitar and cooking healthy dishes with local ingredients. I will also pick back up my favorite game of disc golf, that is, as long as it doesn't boost my heart rate too much.Of course I still have my other hobbies as well that I have picked up during my six months of idleness, such as my increased time for writing and reading, discovering new music, and my various art projects.
In less than one month from now, I will be returning to Baltimore to attend an ARVD seminar. It will give me an opportunity to learn about the new research associated with the disease, and it will also give me a chance to meet other people my age that are going through this. John Hopkins, who specializes in the disease, only has 400 patients in their registry. That includes people, like me, from other parts of the country. Out of millions and millions that live in this country, that is a very small percent of the population who have been diagnosed with this disease; 400 was the size of my graduating high school class. And like I said before, this disease is rare in younger folks so there probably won't be too many people my age with the disease, but I believe the seminar will be good for me. Many people who are diagnosed with ARVD were once very athletic. My goal will be to figure out how they coped with the daily restraints of physical activity and discuss the things they do to stay healthy.
This new life I am living is completely opposite than what I once knew. All it takes is a couple of hours and some unusual overwhelming events to suddenly and drastically change a person's life. But as Victor Frankl once said, "When we are no longer able to change a situation, we are challenged to change ourselves." So because I cannot change my situation, I will be forced to change the person I am. I have decided to use this time to work on myself. To self reflect and attempt to better my mind and soul. The past couple of years I was moving through life a little too fast with not enough thought. Don't get me wrong, I was living life to the fullest with no worries, having the time of my life, but I wasn't pausing to fully embrace myself in the moment. I once was told 'if nothing ever changed, we'd have no butterflies'; but change does happens. So I have to believe something good will come of this or if nothing else, I have to create the good, for time is the greatest innovator. I just make sure to always remind myself that 'It could always be worse!!!'
So that's that!
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