Thursday, October 21, 2010
Results
My heart function test was the same as before. That is good news since there wasn't further deterioration. My rhythm was also stable. My doctor actually told me to increase my salt intake. That I can definitely do!! Now we have to wait another six months before we can start dropping some medications. That is frustrating! I was really hoping to get off some of these dangerous medications. Oh well. At least I'm not going backwards any longer.
Thursday, October 14, 2010
Testing
On September 28th I had some testing done. I had a MUGA scan and got a 24 hour halter monitor. Just routine testing that I made memorable.
A MUGA scan is performed by attaching a radioactive substance, Technetium 99, to red blood cells, then injecting the red blood cells into the patient’s bloodstream. The patient is then placed under a special camera (a gamma camera), which is able to detect the low-level radiation being given off by the Technetium-labelled red cells. Since the red blood cells (including those that are radio-labelled) fill the cardiac chambers, the image produced by the gamma camera is essentially an outline of those chambers. With some fancy computer manipulation, the the final product is a movie of the heart beating. To insure that the red blood cells aren't damaged, they use a large bore needle. Ouch!
The tech drew the blood and was securing the port to my arm for when they would be inserting my "labelled" blood back into my vein. This was interrupted by me going vagal. In regular terms, I passed out. When I do something, I do it well. A while later I awoke (partially) on the floor. I don't remember how I got there since I was sitting in a chair with an arm restraint in front. Oh well, I was laying there with one tech passing something below my nose and the other trying to take my blood pressure. There was also a guy in the room. As I came around more I learned that I had an ice pack under my neck, my feet where elevated on a chair, I was on my second smelling salt and they guy was a cardiologist. After about 40 minutes, they allowed me to sit and drink some juice and eat some crackers. About 20 minutes later they were ready to finish the testing. I would like to apologize to everyone whose appointments ran late that day. Some idiot was being a drama king and requiring too much attention.
I don't get my results until October 21st. I hope they are good, but fear they won't be as I have been doing poorly this last month or so.
A MUGA scan is performed by attaching a radioactive substance, Technetium 99, to red blood cells, then injecting the red blood cells into the patient’s bloodstream. The patient is then placed under a special camera (a gamma camera), which is able to detect the low-level radiation being given off by the Technetium-labelled red cells. Since the red blood cells (including those that are radio-labelled) fill the cardiac chambers, the image produced by the gamma camera is essentially an outline of those chambers. With some fancy computer manipulation, the the final product is a movie of the heart beating. To insure that the red blood cells aren't damaged, they use a large bore needle. Ouch!
The tech drew the blood and was securing the port to my arm for when they would be inserting my "labelled" blood back into my vein. This was interrupted by me going vagal. In regular terms, I passed out. When I do something, I do it well. A while later I awoke (partially) on the floor. I don't remember how I got there since I was sitting in a chair with an arm restraint in front. Oh well, I was laying there with one tech passing something below my nose and the other trying to take my blood pressure. There was also a guy in the room. As I came around more I learned that I had an ice pack under my neck, my feet where elevated on a chair, I was on my second smelling salt and they guy was a cardiologist. After about 40 minutes, they allowed me to sit and drink some juice and eat some crackers. About 20 minutes later they were ready to finish the testing. I would like to apologize to everyone whose appointments ran late that day. Some idiot was being a drama king and requiring too much attention.
I don't get my results until October 21st. I hope they are good, but fear they won't be as I have been doing poorly this last month or so.
Tuesday, September 7, 2010
Baby Sitter
The Sears home repair guy came by today to fix the water softener. He was explaining the costs of installing the $12 part when I started feeling terrible. I was clammy, sweating, dizzy and feeling like I did last October when this all began. Kari and the kids were at school. Kari’s parents (they live 3 houses down from us) were out for lunch. I was scared, so I asked the repair man to babysit me for a bit. He was very kind and understanding. His father has been recently diagnosed with colon cancer and started chemotherapy. Thus he had some empathy for not feeling well and being alone. I felt like such a dork!! 42 years old and needing a stranger to “baby sit” me until the episode passed. I think someone is trying to tell me I’m still not humble enough.
Thursday, September 2, 2010
Pacing
It is so hard to sleep when your heart is being paced. To avoid spurts of A-fib, the cardiologist moved the lowest setting on my pacer to 70. That means if my heart rate drops below 70 beats per minute, my pacemaker kicks in and makes my heart beat 70. During the day it isn't as big of a problem because I am doing things and don't notice it as much. At night, it is a different story. I lay there in silence listening to my heartbeat and feeling it pound in my chest. When you are being paced, your heart beats stronger. So I feel like I just stepped out of a Biggest Loser workout all night. Hopefully after my tests this month I can get it adjusted down some. It doesn't hurt to hope, right...
Friday, August 13, 2010
Catching up
In December, things began to change. The ablation (the doctor goes through blood vessels in your very upper leg and threads tools into your heart then heats tissue to kill irregular beating tissue) worked until mid December. Then I got to start on more medication until my heart healed enough to repeat the procedure. During this time I tried to work very part time, yet accomplished very little. In February I finally gave in to what God had been trying to tell me for months. I stopped practicing dentistry. Some may say that early retirement is great. For me, it was another spiral downward. I loved my job! I loved the staff I worked with. I loved the kids. I loved seeing families that had become friends. These people were an integral part of my life and support system and now they were gone. I felt very alone. This wasn't helping my depression, but I had faith there was a reason. I know that sounds like a conflicting statement, but that is me in a nutshell- Mr. Contradiction.
The office would forward letters and pictures families had given them for me. It was so enjoyable to read them. I could see their faces and it would bring a smile to my face and soul. The times I actually got out of the house I would often run into a family. They would also wish me well and catch me up. Almost without exception, all these families would tell me they were praying for me. I was used to doing the giving and now was on the other side. It was difficult but rewarding. People cared for me. That seems silly, but it made all the difference.
The next change was at church. Everyone wanted to help in some way. Kari and I are not very good at accepting help. We turn people down who ask to bring meals. Other offers are similarly rejected saying we are doing "fine". Eventually life became too hard for Kari and we accepted some much needed help. Members were bringing by goodies and doing yard work. Sometimes they just stopped by to see how we were doing. Now these were no longer people I went to church with, but friends. Again, I found people who cared for me!
In March I had healed enough to have another ablation. This one worked for just over a week. It was very discouraging. At this point the doctor put me on a medication with enough side effects it was like chemotherapy. It would help regulate my heart and help give me time until I could have the procedure again. It is not a fun medication. If you are in the mood to Google look up amiodarone. This helped. A few months later my heart started acting up again. Yes, I got another medication. I now have pill boxes. Not box, boxes. I was supposed to go off the last two meds in June and starts letting them leave my body so I could have another ablation. Didn't happen. I am now on them until October. Uurgh! I am having some tests run in September and I will just have to see how it goes.
The office would forward letters and pictures families had given them for me. It was so enjoyable to read them. I could see their faces and it would bring a smile to my face and soul. The times I actually got out of the house I would often run into a family. They would also wish me well and catch me up. Almost without exception, all these families would tell me they were praying for me. I was used to doing the giving and now was on the other side. It was difficult but rewarding. People cared for me. That seems silly, but it made all the difference.
The next change was at church. Everyone wanted to help in some way. Kari and I are not very good at accepting help. We turn people down who ask to bring meals. Other offers are similarly rejected saying we are doing "fine". Eventually life became too hard for Kari and we accepted some much needed help. Members were bringing by goodies and doing yard work. Sometimes they just stopped by to see how we were doing. Now these were no longer people I went to church with, but friends. Again, I found people who cared for me!
In March I had healed enough to have another ablation. This one worked for just over a week. It was very discouraging. At this point the doctor put me on a medication with enough side effects it was like chemotherapy. It would help regulate my heart and help give me time until I could have the procedure again. It is not a fun medication. If you are in the mood to Google look up amiodarone. This helped. A few months later my heart started acting up again. Yes, I got another medication. I now have pill boxes. Not box, boxes. I was supposed to go off the last two meds in June and starts letting them leave my body so I could have another ablation. Didn't happen. I am now on them until October. Uurgh! I am having some tests run in September and I will just have to see how it goes.
Getting started
In the scriptures is says "...faith in the Lord, and unto repentance bringeth a change of heart unto them.". For me, this is where it began.
A few years back I had become so proud and selfish that I almost lost my wife and family. I changed my priorities and worked hard to make things better at home. During this time I was reading in the scriptures and found this passage. I would plead on my knees for the Lord to change my heart. I wanted to be a better husband, father and child of God.
I have since learned to be more specific in my prayers.
October 19, 2009 - I had a breakthrough. It wasn't the one I was hoping for. I had taken our dog Ruby out to complete her morning ritual. A neighbor dropped by and we spoke for a few minutes. I started to feel nauseous, chest pain, dizziness, cold sweats, etc. I thought I was having a heart attack. Being a subscriber to the male chromosome, I left my neighbor without another word, walked in the house and collapsed. My son found me on the floor and I guess I told him to go get his mom. I had no idea what had happened or for how long. Kari came downstairs and wasn't too alarmed. There have been times before that she has found me sick as a dog on the bathroom floor and there is really nothing to do but let me be sick. But after she started asking specific questions, she realized that I didn't just have some stomach virus and that something more serious was going on. She called the office and said I wouldn't be seeing patients today. She had me take a Xanax to help calm my heart - it was racing and my chest hurt terribly. There had been times before that I have had to do this, but it had never been this bad. She had to quickly get ready for school, call her mom to come over a little early to get the kids off and also to monitor me. Then she had to take Jackson to school by 7:30 and then drive all the way to Maricopa Medical Center by 8am for school. She got home from school early and when I wasn't feeling any better, she called our awesome family doctor and his awesome medical assistant, Angie, told us to come right in.
Angie did a 12-lead EKG when I got there and almost immediately Dr. Wallace came in to see me. Dr. Wallace listened to my symptoms and he felt it was necessary to get a cardiac consultation that afternoon. We couldn't get in with who Dr. Wallace wanted us to see (Dr. Perlstein) so we saw a different doctor. Another 12 lead EKG was done, which again showed I was in full bigeminy (I'll explain later). The cardiologist prescribed a beta blocker (heart medicine) and wanted me to schedule some tests in a few weeks.
Really? That's it? A few tic tacs and tests in a few weeks?
So I went home and continued to collapse, again and again. Kari kept saying that we should just go to the hospital, but still being in denial, I refused. On Tuesday evening, apparently trying to prove to myself that I was just fine, I tried to be helpful with dinner, which is most unlike me. Getting up from the couch to walk 10 feet to the kitchen caused me to black out - still being able to hear what going on around me, but not being able to move or see anything. At that point I guess I took my foot out of the river in Egypt and asked to go to the hospital.
So which hospital do I go to? If we go to Banner Baywood Heart Hospital, they will ask me which doctor I saw on Monday, and then the Tic Tac doctor will be in charge of my care. Um, no.
Kari had been at her parents house and they had shown her an article about a group of cardiologists that bought the old Mesa General Hospital that had been closed for a couple years, and turned it into a hospital that focused on cardiology problems. Kari's lab instructor in nursing school used to be a critical care cardiac nurse and had seen a lot of the care and work that one of the main doctors who bought the hospital had done for his patients. She said he had worked miracles for a lot of patients. So it seemed as though we were being directed to go to this hospital.
So we went.
If you ever want to be seen really really fast when going to the ER, walk in and say you are having chest pains and have been passing out for 2 days. I guarantee it will work anywhere!
So obviously we got right in and I was immediately connected to IV's and monitors. I was pumped full of meds while they tried to ascertain my condition. Kari was appalled (but didn't say anything!) that the nurse didn't wash her hands and then put a nitro pill under my tongue using her bare hands. In a series of fortunate events, we will call this Clue #1, and also not asepsis procedure. And this happened several times. Come on, put a glove on! The nurses were rather cantankerous when they didn't get to gather around the nurses station and talk. Clue #2.
And oh, my goodness....the patient next to me was about 400 pounds and every 2 or 3 minutes he belched like he had just downed a 12 pack. At one point a doctor was speaking with him and mentioned politely something about "a man with your girth" and the patient, in between belching, was completely insensed and said, "So what are you saying? I'm fat?"
At that moment, it was a little comic relief for us. But after several hours of repeated belching, it quickly became very annoying. I was finally told that I was being admitted and I casually cmmented to Kari that the man with the girth had better not be my roommate. An hour or so after getting to my room, the nurse informed me that I would be getting a roommate. Kari and I looked at each other with wide eyes.
And eventually Mr. Belch was wheeled into my room, along with his sleep apnea machine and body odor.
Unless you were there and experienced this gentleman, please don't label me as judgmental. Actually, go ahead, because it was awful to share a room with this guy and I am putting it in writing!
I stayed there for two days. I had an echo (ultrasound of the heart) which they said was normal. They put me on an amniodarone drip to try to control the arrythmia that I was having, but it did nothing. I had 2 IVs, one in each arm where blood is usually drawn from, so I couldn't bend either arm, leaving me unable to care for myself, including eating or scratching my nose. Two days, yet still no explanation from the doctors. In fact, I had yet to even see the doctor, save a 3 minute appearance in the ER. I couldn't get any rest due to Mr. Belch and his sleep apnea machine and unique odor. One of my arms hurt terribly from the IV, but I said nothing.
Kari came the next day and heard all of my complaints (except the pain in my arm, b/c I didn't say anything yet) and walked out of the room to find the charge nurse. She insisted that I be moved to a different room. It's funny how when you speak up, sometimes things change for the better. Some had just been discharged and I got moved to a new room and it was a private room. But still no visit from an actual doctor, just a PA. By the end of Wednesday, Kari and I were both very frustrated and disappointed with that quality of care and the lack of answers from the medical staff.
Kari went home that night and happened to talk to our next door neighbor, who is a Mesa Firefighter. His mother-in-law and sister-in-law had gone through similar problems and he said we needed to get Jonathan out of that hospital and get Dr. Perlstein as his doctor. He instructed her how to get Dr. Perlstein to accept me as a patient and how to get me transferred to the Heart Hospital. It was absolutely great advice, but after Kari went inside she started having a panic attack because she felt she had put me in a situation that may have made my condition worse. She walked over to her parents house and cried and cried. And then she pulled herself together and formed a plan to get me out my current hospital. She and Dr. Wallace worked some miracles and made arrangements to be transported to Banner Heart Hospital. And somehow, they were able to convince Dr. Edward Perlstein to care for me.
There was a nurse at the first hospital, who was not my nurse, but was helping to get me ready to be transferred, who whispered to me that it was a good decision to be going to a different hospital. But honestly, the way it happened allowed me to be blessed to have Dr. Perlstein as my doctor. If I had gone to the Heart Hospital first, he would not have been my doctor.
This is where the phrase "God works in mysterious ways" was applied in my life.
This is where the phrase "sometimes things get worse before they get better" was applied in my situation.
Within 2 minutes of sitting down in my new hospital bed, a nurse came in and spent an hour with me, going over history and doing a full assessment on me. Within the hour, Dr. Perlstein was in my room, sitting in a chair (how many doctors actually sit down in their patients' rooms?!) and spent at least a half hour with me, asking questions and explaining what his plan for me was. Within 2 hours, Dr. Chan, my electrophysiologist, came in my room and SAT DOWN, and chatted with us for at least 45 minutes. Kari thinks he is probably the happiest and funniest doctor she has ever met. Dr. Chan mapped out a plan for me as well, working with Dr. Perlstein.
I had nurses ask who I was or why I was getting such special treatment. They said everyone gets excellent care there, but I was getting the VIP treatment. I'm not exactly sure why I was treated so special. Maybe it was because I was a 41 yr old pediatric dentist with 4 kids and a serious heart problem. Maybe it was because of my good looks and full head of hair. I don't know. But I do feel blessed that events unfolded the way that they did.
Within 24 hours I had a diagnosis and procedures scheduled.
Viral cardiomyopathy.
It is from a simple, very common childhood virus. Instead of me getting sick with typical viral symptoms, the virus attacked my heart muscle. My heart function, or ejection fraction (the amount of blood the left ventricle can pump out to the body) was around 30%. Dr. Chan said that left untreated, an ejection fraction of 20% gives you about a year to live. That was hard to hear. To compound the problem, my heart was beating irregularly (remember I said I would explain what full bigeminy was). I had two contractions in the lower chambers for every one in the top chambers. This made my heart even less efficient.
Oddly, if blood doesn't circulate to your brain, it is hard to stay vertical.
After the echo I was scheduled for an angiogram. This is where sheaths are placed in my femoral artery and a camera is threaded through the sheaths, up to my heart, to take a look at my arteries and my heart function. It also gives a much more accurate ejection fraction, which turned out to be about 25%.
I got back to my room and within about an hour the nurse informed me that I was scheduled for surgery to have a pacemaker/defibrillator put in.
WHAT?
Apparently Dr. Perlstein relayed the information from the angio and Dr. Chan moved into high gear and immediately scheduled me for a pacemaker. Eventually Dr. Chan explained that the risk for sudden death was too great to wait any amount of time to have it placed.
Two procedures in one day. Pain medication is my friend.
I needed an ablation procedure to kill the misbehaving cells in my heart that were causing the arrythmia. But my heart was too sick to do it yet. I still wasn't ready to be discharged from the hospital. I had entered the other hospital on a Tuesday night, and it wasn't until Wednesday the following week that I was discharged, only to come back Friday morning to have the ablation. I would end up staying overnight because the doctor would be ablating in both ventricles. After the procedure, Kari was in my room and my rhythm looked great. And then there was a point where she said it just went crazy again, but different than what it had been before. And that is also when I started to be in incredible amounts of pain. Dilaudid, which is 10 times stronger than morphine, barely touched the pain. Kari eventually had to go home, but all night long I was awake with terrible pain in my chest. It was a pain that was different than before. Three nurses and two internal medicine doctors decided that it was just constipation.
Yeah, constipation in which Dilaudid does not relieve the pain.
I was discharged the next day still in massive amounts of pain. It was a come and go kind of pain, but way more coming than going. And the going never completely went away. I will spare you the details of trying to resolve the diagnosis of constipation, but I will say that I had to lay perfectly still to keep the pain barely tolerable.
Nine hours after being discharged, I begged to be taken to the hospital.
Kari emailed Dr. Perlstein (he gave us his cell number and email address, can you believe that?) and it went directly to his phone and he emailed back within a few minutes. "Take him directly to the ER and have them do an echo of his heart." So she printed the email and got me in the car, leaving her parents to do Halloween with kids.
The ER got me right in - I swear the whole "I just had a pacemaker put in a week ago and had an ablation yesterday" spiel gets you right in! An xray showed that one of the pacemaker wires had come loose and instead of pacing my heart, it was pacing muscles not meant to be paced. When I say pacing, think electricity. Electricity shocking muscles that are not supposed to be shocked. So I was admitted to the heart hospital and my pain was managed as best as possible, and the next day I visited the Cath Lab for the 4th time. Dr. Chan repositioned the wire to a different spot and thankfully it has stayed there since then! But I was still having a lot of arrythmias and dizzy spells, so they kept me until Tuesday afternoon.
The total tally of hospital time was 2 weeks, minus the 1 1/2 days before the ablabtion, and 9 hours on Halloween.
I don't like hospitals.
It took weeks to regain my strength. I sat on the couch or in my bed continuously. My wife, who is in nursing school full time, then became responsible for everything - me, the kids, the housework, shopping, dinner and helping the kids. I tried to work occasionally, but rarely made it through a day and I saw almost no patients while I was there. I was however blessed beyond measure with an outpouring of love from staff, patients and their families. I had never in my life felt loved as I did then. It helped break down some of my walls.
It was at this time, while continuing to pray for a new heart (spiritually) that I realized I should be more specific. I was very close to a having to have a transplant and dreaded it. It was not the new heart I wanted. My prayers at this time became much more precise. I hated giving up my life's dream to practice pediatric dentistry. It had been rewarding beyond measure. I loved my staff, my patients and most of their parents. LOL.
Now that I am home with no hobbies (my wife informs me that using the remote control for the TV is not a sport or a hobby). Now is when I work on my pride. So many friends and neighbors have offered so much. It is very hard for me to allow others to give me service. Luckily that is changing too. I feel so much love and gratitude for those who selflessly help my family. Meals, treats, yard work, visits and especially prayers.
I know hope for a different change of heart (spiritually) and pray for health of my physical one. So many friends and relatives ask how I am doing. I am terrible at keeping in touch. After many requests I am trying this blogging thing. I am not a great writer so bear with me. I will try to add updates on my health and circumstances and also write about other things in my life as well. Please feel free to share words of wisdom and encouragement. Ask questions also! Hopefully this will give me more to do than feel sorry for myself and watch TV.
Incidentally, I don't think there is an episode of Iron Chef that I have not seen.
A few years back I had become so proud and selfish that I almost lost my wife and family. I changed my priorities and worked hard to make things better at home. During this time I was reading in the scriptures and found this passage. I would plead on my knees for the Lord to change my heart. I wanted to be a better husband, father and child of God.
I have since learned to be more specific in my prayers.
October 19, 2009 - I had a breakthrough. It wasn't the one I was hoping for. I had taken our dog Ruby out to complete her morning ritual. A neighbor dropped by and we spoke for a few minutes. I started to feel nauseous, chest pain, dizziness, cold sweats, etc. I thought I was having a heart attack. Being a subscriber to the male chromosome, I left my neighbor without another word, walked in the house and collapsed. My son found me on the floor and I guess I told him to go get his mom. I had no idea what had happened or for how long. Kari came downstairs and wasn't too alarmed. There have been times before that she has found me sick as a dog on the bathroom floor and there is really nothing to do but let me be sick. But after she started asking specific questions, she realized that I didn't just have some stomach virus and that something more serious was going on. She called the office and said I wouldn't be seeing patients today. She had me take a Xanax to help calm my heart - it was racing and my chest hurt terribly. There had been times before that I have had to do this, but it had never been this bad. She had to quickly get ready for school, call her mom to come over a little early to get the kids off and also to monitor me. Then she had to take Jackson to school by 7:30 and then drive all the way to Maricopa Medical Center by 8am for school. She got home from school early and when I wasn't feeling any better, she called our awesome family doctor and his awesome medical assistant, Angie, told us to come right in.
Angie did a 12-lead EKG when I got there and almost immediately Dr. Wallace came in to see me. Dr. Wallace listened to my symptoms and he felt it was necessary to get a cardiac consultation that afternoon. We couldn't get in with who Dr. Wallace wanted us to see (Dr. Perlstein) so we saw a different doctor. Another 12 lead EKG was done, which again showed I was in full bigeminy (I'll explain later). The cardiologist prescribed a beta blocker (heart medicine) and wanted me to schedule some tests in a few weeks.
Really? That's it? A few tic tacs and tests in a few weeks?
So I went home and continued to collapse, again and again. Kari kept saying that we should just go to the hospital, but still being in denial, I refused. On Tuesday evening, apparently trying to prove to myself that I was just fine, I tried to be helpful with dinner, which is most unlike me. Getting up from the couch to walk 10 feet to the kitchen caused me to black out - still being able to hear what going on around me, but not being able to move or see anything. At that point I guess I took my foot out of the river in Egypt and asked to go to the hospital.
So which hospital do I go to? If we go to Banner Baywood Heart Hospital, they will ask me which doctor I saw on Monday, and then the Tic Tac doctor will be in charge of my care. Um, no.
Kari had been at her parents house and they had shown her an article about a group of cardiologists that bought the old Mesa General Hospital that had been closed for a couple years, and turned it into a hospital that focused on cardiology problems. Kari's lab instructor in nursing school used to be a critical care cardiac nurse and had seen a lot of the care and work that one of the main doctors who bought the hospital had done for his patients. She said he had worked miracles for a lot of patients. So it seemed as though we were being directed to go to this hospital.
So we went.
If you ever want to be seen really really fast when going to the ER, walk in and say you are having chest pains and have been passing out for 2 days. I guarantee it will work anywhere!
So obviously we got right in and I was immediately connected to IV's and monitors. I was pumped full of meds while they tried to ascertain my condition. Kari was appalled (but didn't say anything!) that the nurse didn't wash her hands and then put a nitro pill under my tongue using her bare hands. In a series of fortunate events, we will call this Clue #1, and also not asepsis procedure. And this happened several times. Come on, put a glove on! The nurses were rather cantankerous when they didn't get to gather around the nurses station and talk. Clue #2.
And oh, my goodness....the patient next to me was about 400 pounds and every 2 or 3 minutes he belched like he had just downed a 12 pack. At one point a doctor was speaking with him and mentioned politely something about "a man with your girth" and the patient, in between belching, was completely insensed and said, "So what are you saying? I'm fat?"
At that moment, it was a little comic relief for us. But after several hours of repeated belching, it quickly became very annoying. I was finally told that I was being admitted and I casually cmmented to Kari that the man with the girth had better not be my roommate. An hour or so after getting to my room, the nurse informed me that I would be getting a roommate. Kari and I looked at each other with wide eyes.
And eventually Mr. Belch was wheeled into my room, along with his sleep apnea machine and body odor.
Unless you were there and experienced this gentleman, please don't label me as judgmental. Actually, go ahead, because it was awful to share a room with this guy and I am putting it in writing!
I stayed there for two days. I had an echo (ultrasound of the heart) which they said was normal. They put me on an amniodarone drip to try to control the arrythmia that I was having, but it did nothing. I had 2 IVs, one in each arm where blood is usually drawn from, so I couldn't bend either arm, leaving me unable to care for myself, including eating or scratching my nose. Two days, yet still no explanation from the doctors. In fact, I had yet to even see the doctor, save a 3 minute appearance in the ER. I couldn't get any rest due to Mr. Belch and his sleep apnea machine and unique odor. One of my arms hurt terribly from the IV, but I said nothing.
Kari came the next day and heard all of my complaints (except the pain in my arm, b/c I didn't say anything yet) and walked out of the room to find the charge nurse. She insisted that I be moved to a different room. It's funny how when you speak up, sometimes things change for the better. Some had just been discharged and I got moved to a new room and it was a private room. But still no visit from an actual doctor, just a PA. By the end of Wednesday, Kari and I were both very frustrated and disappointed with that quality of care and the lack of answers from the medical staff.
Kari went home that night and happened to talk to our next door neighbor, who is a Mesa Firefighter. His mother-in-law and sister-in-law had gone through similar problems and he said we needed to get Jonathan out of that hospital and get Dr. Perlstein as his doctor. He instructed her how to get Dr. Perlstein to accept me as a patient and how to get me transferred to the Heart Hospital. It was absolutely great advice, but after Kari went inside she started having a panic attack because she felt she had put me in a situation that may have made my condition worse. She walked over to her parents house and cried and cried. And then she pulled herself together and formed a plan to get me out my current hospital. She and Dr. Wallace worked some miracles and made arrangements to be transported to Banner Heart Hospital. And somehow, they were able to convince Dr. Edward Perlstein to care for me.
There was a nurse at the first hospital, who was not my nurse, but was helping to get me ready to be transferred, who whispered to me that it was a good decision to be going to a different hospital. But honestly, the way it happened allowed me to be blessed to have Dr. Perlstein as my doctor. If I had gone to the Heart Hospital first, he would not have been my doctor.
This is where the phrase "God works in mysterious ways" was applied in my life.
This is where the phrase "sometimes things get worse before they get better" was applied in my situation.
Within 2 minutes of sitting down in my new hospital bed, a nurse came in and spent an hour with me, going over history and doing a full assessment on me. Within the hour, Dr. Perlstein was in my room, sitting in a chair (how many doctors actually sit down in their patients' rooms?!) and spent at least a half hour with me, asking questions and explaining what his plan for me was. Within 2 hours, Dr. Chan, my electrophysiologist, came in my room and SAT DOWN, and chatted with us for at least 45 minutes. Kari thinks he is probably the happiest and funniest doctor she has ever met. Dr. Chan mapped out a plan for me as well, working with Dr. Perlstein.
I had nurses ask who I was or why I was getting such special treatment. They said everyone gets excellent care there, but I was getting the VIP treatment. I'm not exactly sure why I was treated so special. Maybe it was because I was a 41 yr old pediatric dentist with 4 kids and a serious heart problem. Maybe it was because of my good looks and full head of hair. I don't know. But I do feel blessed that events unfolded the way that they did.
Within 24 hours I had a diagnosis and procedures scheduled.
Viral cardiomyopathy.
It is from a simple, very common childhood virus. Instead of me getting sick with typical viral symptoms, the virus attacked my heart muscle. My heart function, or ejection fraction (the amount of blood the left ventricle can pump out to the body) was around 30%. Dr. Chan said that left untreated, an ejection fraction of 20% gives you about a year to live. That was hard to hear. To compound the problem, my heart was beating irregularly (remember I said I would explain what full bigeminy was). I had two contractions in the lower chambers for every one in the top chambers. This made my heart even less efficient.
Oddly, if blood doesn't circulate to your brain, it is hard to stay vertical.
After the echo I was scheduled for an angiogram. This is where sheaths are placed in my femoral artery and a camera is threaded through the sheaths, up to my heart, to take a look at my arteries and my heart function. It also gives a much more accurate ejection fraction, which turned out to be about 25%.
I got back to my room and within about an hour the nurse informed me that I was scheduled for surgery to have a pacemaker/defibrillator put in.
WHAT?
Apparently Dr. Perlstein relayed the information from the angio and Dr. Chan moved into high gear and immediately scheduled me for a pacemaker. Eventually Dr. Chan explained that the risk for sudden death was too great to wait any amount of time to have it placed.
Two procedures in one day. Pain medication is my friend.
I needed an ablation procedure to kill the misbehaving cells in my heart that were causing the arrythmia. But my heart was too sick to do it yet. I still wasn't ready to be discharged from the hospital. I had entered the other hospital on a Tuesday night, and it wasn't until Wednesday the following week that I was discharged, only to come back Friday morning to have the ablation. I would end up staying overnight because the doctor would be ablating in both ventricles. After the procedure, Kari was in my room and my rhythm looked great. And then there was a point where she said it just went crazy again, but different than what it had been before. And that is also when I started to be in incredible amounts of pain. Dilaudid, which is 10 times stronger than morphine, barely touched the pain. Kari eventually had to go home, but all night long I was awake with terrible pain in my chest. It was a pain that was different than before. Three nurses and two internal medicine doctors decided that it was just constipation.
Yeah, constipation in which Dilaudid does not relieve the pain.
I was discharged the next day still in massive amounts of pain. It was a come and go kind of pain, but way more coming than going. And the going never completely went away. I will spare you the details of trying to resolve the diagnosis of constipation, but I will say that I had to lay perfectly still to keep the pain barely tolerable.
Nine hours after being discharged, I begged to be taken to the hospital.
Kari emailed Dr. Perlstein (he gave us his cell number and email address, can you believe that?) and it went directly to his phone and he emailed back within a few minutes. "Take him directly to the ER and have them do an echo of his heart." So she printed the email and got me in the car, leaving her parents to do Halloween with kids.
The ER got me right in - I swear the whole "I just had a pacemaker put in a week ago and had an ablation yesterday" spiel gets you right in! An xray showed that one of the pacemaker wires had come loose and instead of pacing my heart, it was pacing muscles not meant to be paced. When I say pacing, think electricity. Electricity shocking muscles that are not supposed to be shocked. So I was admitted to the heart hospital and my pain was managed as best as possible, and the next day I visited the Cath Lab for the 4th time. Dr. Chan repositioned the wire to a different spot and thankfully it has stayed there since then! But I was still having a lot of arrythmias and dizzy spells, so they kept me until Tuesday afternoon.
The total tally of hospital time was 2 weeks, minus the 1 1/2 days before the ablabtion, and 9 hours on Halloween.
I don't like hospitals.
It took weeks to regain my strength. I sat on the couch or in my bed continuously. My wife, who is in nursing school full time, then became responsible for everything - me, the kids, the housework, shopping, dinner and helping the kids. I tried to work occasionally, but rarely made it through a day and I saw almost no patients while I was there. I was however blessed beyond measure with an outpouring of love from staff, patients and their families. I had never in my life felt loved as I did then. It helped break down some of my walls.
It was at this time, while continuing to pray for a new heart (spiritually) that I realized I should be more specific. I was very close to a having to have a transplant and dreaded it. It was not the new heart I wanted. My prayers at this time became much more precise. I hated giving up my life's dream to practice pediatric dentistry. It had been rewarding beyond measure. I loved my staff, my patients and most of their parents. LOL.
Now that I am home with no hobbies (my wife informs me that using the remote control for the TV is not a sport or a hobby). Now is when I work on my pride. So many friends and neighbors have offered so much. It is very hard for me to allow others to give me service. Luckily that is changing too. I feel so much love and gratitude for those who selflessly help my family. Meals, treats, yard work, visits and especially prayers.
I know hope for a different change of heart (spiritually) and pray for health of my physical one. So many friends and relatives ask how I am doing. I am terrible at keeping in touch. After many requests I am trying this blogging thing. I am not a great writer so bear with me. I will try to add updates on my health and circumstances and also write about other things in my life as well. Please feel free to share words of wisdom and encouragement. Ask questions also! Hopefully this will give me more to do than feel sorry for myself and watch TV.
Incidentally, I don't think there is an episode of Iron Chef that I have not seen.
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