Scroll to the bottom for results (last paragraph) if you want to skip the reading.
I am so thankful to be over and done with all of this Gastrointestinal nonsense. Not only was getting the Scopes scheduled a frustrating process, but the prep work, the cleansing I had to do to prepare my body for the Colonoscopy and Endoscopy, was brutal. It was nauseating, tiresome, gross, and a bit painful.
The day before the Scopes I had to be on a Clear Liquid Only diet. It wasn't too bad, but because I take a large amount of pills, and many require food to be taken with the pills, I was extremely nauseous all day. But the real challenge came at 7:30pm when I had to start drinking my prescribed Prep Juice. It was 6oz of hell, that I had to mix with 10oz of water. I was aloud to mix the prep with Gatorade or Diet Sprite, but when I opened it, the liquid didn't seem to smell too bad and it was clear, so I thought mixing it with water would be just fine. But oh, how I was so, so wrong! I had to finish the 16oz of pure nastiness and then down another 32oz of water within the hour. The mix was so gross I almost threw up four different times. I luckily was able to hold it down, but I came very, very close to expelling the Prep from my body immediately. It took me half an hour to get down the first 16oz of mix, which made me feel deathly nauseous for the next two hours.
It was definitely a brutal experience, I was just trying to imagine how I was going to do it all over again in the morning. Because come 8:30 in the morning that's exactly what was in store for me. Another round of 16oz mix followed by 32oz of water immediately. This time I had learned my lesson, the hard way of course...the story of my life. So this time, I mixed my prep with Gatorade and after every large chug I sucked on a Lifesaver to change the taste in my mouth. It worked for the most part. I only came very close to throwing up once. After I finished, I felt like shit, but I was extremely elated. No more! I had gotten through the hard part. I was very pleased to be done with my prep work.
So 12:30 came around and we headed to the hospital for the Scopes and I was taken to the back right away. It's always pleasant when you don't have to spend an hour or so in the waiting room. They took all my history, put the IV in, gave me some happy meds, and then carted me off to the operating room. Next thing I know, I'm waking up screaming and crying. The doctors used Twilight sedation as opposed to General Anesthesia, meaning I was still asleep and was able to breath without assistance. So when I was coming out of my Anesthesia, I was actually awoken by a nightmare I was having. I thought I had gotten shocked, and it sure felt real.
My dream, I remember it very vividly, had me lying on an operating table surrounded by a bunch of nurses that then used paddles on my chest to shock me [End Dream]. So after my scopes, when I was in the recovery room in a deep sleep, I started to scream and apparently yelled for my mother. The nurses went and got her and by the time she arrived, I was still half asleep so she was trying to wake me up, even though at this point I was full on crying. I kept asking if I had gotten shocked and I was informed that I had not, and that my heart was just fine, but I could not wrap my head around this. The shock felt so real, looked so real, that I truly believed I had indeed been shocked. After the nurses and my mom kept reassuring me that I was fine and that nothing of the sort had occurred, I was trying to understand why my dream was so real. I have never reacted to anesthesia in this way. I always wake up from it in a calm, drugged up sluggish way. But this time was very different. Anesthesia can do some really crazy things to a person in general, but come to find out the nurses were talking about my history in the operating room, while I was under, about being shocked and they carried on a conversation in general about being shocked. Since I was not completely anesthetized, even though I was asleep, my brain probably picked up on the conversation and I believe that is where the dream came from. Not to mention, the last time I went under with Twilight sedation*, in Reno, NV during my first ablation, I was shocked. Like I said Twilight sedation does not completely knock you out, so when I was shocked, I was awake and I felt it, and it was the worst pain I have ever felt. It is much worst than an internal defibrillator shock. I cried and cried and then threw up and cried some more until the doctors knocked me completely out. So between being shocked the last time I was Twilighted and the nurses talking about being shocked while I was asleep, that led me to have a nightmare, truly believing and feeling that I had been shocked again, and it was quite a horrific and traumatic experience. It was a terrifying way of waking up, but my heart was stable and that is all that matters. *All other surgeries and ablations I have had used General Anesthesia.
The good news however, is that the doctor did find some things that are probably causing my severe abdominal pain, yet not very serious problems. He found a lot of inflammation on my right side as well as a good amount of bacteria in my colon which caused two pre-ulcers, as he called them, that he also found. One near my stomach and the other in the inflammation in my colon. The inflammation and the pre-ulcers can be reversed with the use of medicine, Nexium. How long I will have to stay on the medicine is unknown. Some stay on it for months, some stay on it for life. So I'm hoping for the former. The doctor also did a biopsy just to make sure everything was A-Ok and when the results come back from that, I will also be put on an antibiotic to rid my body of the bacteria, which could be caused by the large amount of potassium I take. But we'll figure that out later. Sooo... this means I'm going to Montana and Seattle! I will have to miss a week and a half of cardiac rehab but that is doable, I'd much rather go out west and see me friends. 6AM Monday morning, I'm out!!!
Saturday, March 10, 2012
Tuesday, March 6, 2012
Cardiac Rehab
So far I have attended three cardiac rehab sessions. Given this disease, I am not aloud to participate in any strenuous activity. Johns Hopkins spoke directly to my nurses and doctor at Cardiac Rehab to discuss my parameters. They decided that I am not to lift anything heavier than 10lb hand weights and that my heart rate should not exceed 120bpm.
The first session went well, I spent the first half hour speaking with the doctor about my health issues and the second half hour walking on the treadmill for 2.7mph. It was a good start. The second session I was able to get in a full hour of exercise. I started on the stationary bike for 15 min and then I walked on the treadmill for 35min at 2.8mph. This past session, my third one, really wore me out. I spent the first 12 min on the stationary bike and rode 2 miles and then walked on the treadmill for 25min at 3mph, which was really tiring, and then went back to the bike for 10min and rode close to another 2 miles. While walking, my heart rate rose to 114bpm, which is normal but a bit nerve wracking. I just don't know how much more exercise I can do if I'm not aloud to get my heart rate above 120. But it's good to know my heart is staying strong, even though the reality of never being able to participate in sports again is very heartbreaking.
I do indeed love going to rehab. All the fellow patients look after me, are very friendly, and very very chatty. Rehab lowers my anxiety giving me confidence in myself and in my health by being able to see my heart react to the exercise. This may not seem like much to most people, but it is a tremendous step for me. Being shocked by a defibrillator really takes something out of you, it takes your strength and confidence, it can make you fear life and fear all the small things, and most of all it takes your peace of mind. Every night as I try to fall asleep and I feel my PVC's (skipped heartbeats) all I can focus on is the fear of getting shocked. Everyday I think about getting shocked, every single day. So this rehab is not only to regain my confidence and rid myself of anxiety, but to find some sort of peace of mind. That's what I truly want, Peace of Mind.
Health Update:
I went for a check-up with my Nephrologist, my kidney doctor, and he informed me that my carbon dioxide levels are low. I've been getting my blood checked every month for about 7 months now and every month the CO2 levels have been low. This is due to my kidneys malfunctioning. If the levels of carbon dioxide become too low and remain that way, that will cause the blood to become very acidic which could eventually start to corrode the bones. So once my stomach issues are solved I will have to start taking a baking soda pill to keep those levels under control.
The first session went well, I spent the first half hour speaking with the doctor about my health issues and the second half hour walking on the treadmill for 2.7mph. It was a good start. The second session I was able to get in a full hour of exercise. I started on the stationary bike for 15 min and then I walked on the treadmill for 35min at 2.8mph. This past session, my third one, really wore me out. I spent the first 12 min on the stationary bike and rode 2 miles and then walked on the treadmill for 25min at 3mph, which was really tiring, and then went back to the bike for 10min and rode close to another 2 miles. While walking, my heart rate rose to 114bpm, which is normal but a bit nerve wracking. I just don't know how much more exercise I can do if I'm not aloud to get my heart rate above 120. But it's good to know my heart is staying strong, even though the reality of never being able to participate in sports again is very heartbreaking.
I do indeed love going to rehab. All the fellow patients look after me, are very friendly, and very very chatty. Rehab lowers my anxiety giving me confidence in myself and in my health by being able to see my heart react to the exercise. This may not seem like much to most people, but it is a tremendous step for me. Being shocked by a defibrillator really takes something out of you, it takes your strength and confidence, it can make you fear life and fear all the small things, and most of all it takes your peace of mind. Every night as I try to fall asleep and I feel my PVC's (skipped heartbeats) all I can focus on is the fear of getting shocked. Everyday I think about getting shocked, every single day. So this rehab is not only to regain my confidence and rid myself of anxiety, but to find some sort of peace of mind. That's what I truly want, Peace of Mind.
Health Update:
I went for a check-up with my Nephrologist, my kidney doctor, and he informed me that my carbon dioxide levels are low. I've been getting my blood checked every month for about 7 months now and every month the CO2 levels have been low. This is due to my kidneys malfunctioning. If the levels of carbon dioxide become too low and remain that way, that will cause the blood to become very acidic which could eventually start to corrode the bones. So once my stomach issues are solved I will have to start taking a baking soda pill to keep those levels under control.
Tuesday, February 21, 2012
A Story of a Frustrated Patient
Well as mentioned in my previous post, I thought I was sick and tired of being sick and tired. In actuality, in this past month, I have instead grown sick and tired of not getting the appropriate health care I feel I am paying for. I am frustrated and infuriated. I went to my first cardiac rehab meeting on the 15th and the nurses decided that I was not ready to officially start until the situation with my colon and the pain caused by it, was under control. So the following post is the story of me trying just that...to get my pain managed and discover the source of it. Well so far, not so good.
Ever since at least July when I had my gallbladder out, if not before, my stomach has been very sore to the touch. But the last weeks of January, as I started doing Yoga, not only did the pain start to increase, but I was able to pinpoint where the pain was coming from. I gave it a few days to see if the pain would subside, but the opposite occurred. I decided to call my GI and schedule an appointment. I was seen by a very nice nurse practitioner around Jan 27th, who was not sure what this was, but her guess was an ulcer. She proceeded to schedule an X-ray and an ultrasound within the week (Feb.7th). If I was in good health the NP would have gone straight to scheduling the colonoscopy and endoscopy, but she decided to rule out anything that could be detected by non-invasive tests first. I was told to follow up with her in one week to go over the results. Instead the office scheduled my next appointment a month later, sadly I didn't realize this until I made it home. Luckily, with some persistence, I was able to make the appointment two weeks after I saw her which was somewhat of an improvement, but this time with a different nurse practitioner aT a different office.
So I managed to get a second appointment instead of March 1st, it was now for Feb. 13th. By this time, my pain was still increasing, but now I had severe nausea accompanying the existing symptoms. My pain was and is so bad that when the doctor presses on my stomach, it instantly brings me to tears, and I have a pretty high tolerance for pain. The nurse called in the doctor who was there to briefly check over me. He prescribed me painkillers and nausea medicine, and scheduled a CT scan the following day. He specifically told me to follow up in one week with my original doctor who I had seen in July and December. Instead, they schedule my next appointment another month out to see another nurse practitioner. I was not at all happy nor satisfied with this, so I demanded to be seen sooner due to my pain. After a few phone calls they were able to squeeze me in, in one of there nine offices to see yet another nurse practitioner I had never seen on Feb 20th.
The nurse practitioner I saw this time was very brief with me, and treated my symptoms as if they were mild or not so bothersome. She told me if the Scopes don't show anything there were no more options, oh and by the way we found a cyst on your left ovary and then she left the room, not to be seen again. Well I know cysts are common and most everyone women has one, but she could have given me a little more detail, like if I need to follow up with an OBGYN or something? So I was shoveled to the scheduler for the Scopes and was told May 8th was the soonest they could operate. This was really when the frustration kicked in. Not only have I not been able to consult with my doctor about my severe pain I'm in, I have to be in this severe pain for over 2 1/2 months. That's a hell of a long time to be on painkillers. They said there was nothing more they could do for me. After an attempt to contact my doctor directly and a long phone call with his nurse, his office finally squeezed me in between two of his appointments and they also informed me that the cyst is normal but yes, I should get it checked out by my OBGYN.
So Wednesday I go in at 10:30 to see my practicing doctor, the one who will actually be performing the Colonoscopy/Endoscopy. My goal is that he'll recognize my level of pain and hopefully decide that these scopes need to be pretty urgent. If not, than I don't know what to do. Maybe I'll go to another GI practice or check into the ER. But either way, out of all the many doctors I have seen, this is the most disrespected I have ever felt. I feel like my pain does not matter, I feel like my health does not matter, and I am sick and tired of this place and cannot wait until I do not have to go back. In which case I do hope there is in fact a day I do not have to go back to them
So to sum this up, within a month's time I have seen 3 different nurse practitioners at 3 different office locations, one doctor that is not my practicing doctor there, and I'm about to go in for another visit to see my actual doctor, for the first time since my intense pain has started. Not only that, if I had left the original scheduled appointments as is, I still wouldn't of had my second appointment until March 1st, meaning I wouldn't of had my CT scan until the end of the first week of March. This is CRAZY!!! I don't get how they throw me on painkillers and then not be able to do a Scope until May. I have way too many obligations before hand, a trip to Montana/Seattle, Cardiac Rehab, and a speech at the annual ARVD conference in Baltimore. I'm sorry but May will not work for me, I need to figure out what is wrong..NOW!
Anyone know someone who does Scopes on the black market?
Well, I went to the doctor today and it didn't go quite as expected. I still have to wait a few weeks to get my Scopes done, and this doctor said he is not in the business of pain management, so no more painkillers for me. I guess the waiting begins. I was also bought plane tickets to Montana and Seattle for March 12th-20th but I'm starting to get worried those plans are about to fall through. Luckily, I bought insurance, but I'm hoping I won't have to worry about that...we will see. The story of my life!
Ever since at least July when I had my gallbladder out, if not before, my stomach has been very sore to the touch. But the last weeks of January, as I started doing Yoga, not only did the pain start to increase, but I was able to pinpoint where the pain was coming from. I gave it a few days to see if the pain would subside, but the opposite occurred. I decided to call my GI and schedule an appointment. I was seen by a very nice nurse practitioner around Jan 27th, who was not sure what this was, but her guess was an ulcer. She proceeded to schedule an X-ray and an ultrasound within the week (Feb.7th). If I was in good health the NP would have gone straight to scheduling the colonoscopy and endoscopy, but she decided to rule out anything that could be detected by non-invasive tests first. I was told to follow up with her in one week to go over the results. Instead the office scheduled my next appointment a month later, sadly I didn't realize this until I made it home. Luckily, with some persistence, I was able to make the appointment two weeks after I saw her which was somewhat of an improvement, but this time with a different nurse practitioner aT a different office.
So I managed to get a second appointment instead of March 1st, it was now for Feb. 13th. By this time, my pain was still increasing, but now I had severe nausea accompanying the existing symptoms. My pain was and is so bad that when the doctor presses on my stomach, it instantly brings me to tears, and I have a pretty high tolerance for pain. The nurse called in the doctor who was there to briefly check over me. He prescribed me painkillers and nausea medicine, and scheduled a CT scan the following day. He specifically told me to follow up in one week with my original doctor who I had seen in July and December. Instead, they schedule my next appointment another month out to see another nurse practitioner. I was not at all happy nor satisfied with this, so I demanded to be seen sooner due to my pain. After a few phone calls they were able to squeeze me in, in one of there nine offices to see yet another nurse practitioner I had never seen on Feb 20th.
The nurse practitioner I saw this time was very brief with me, and treated my symptoms as if they were mild or not so bothersome. She told me if the Scopes don't show anything there were no more options, oh and by the way we found a cyst on your left ovary and then she left the room, not to be seen again. Well I know cysts are common and most everyone women has one, but she could have given me a little more detail, like if I need to follow up with an OBGYN or something? So I was shoveled to the scheduler for the Scopes and was told May 8th was the soonest they could operate. This was really when the frustration kicked in. Not only have I not been able to consult with my doctor about my severe pain I'm in, I have to be in this severe pain for over 2 1/2 months. That's a hell of a long time to be on painkillers. They said there was nothing more they could do for me. After an attempt to contact my doctor directly and a long phone call with his nurse, his office finally squeezed me in between two of his appointments and they also informed me that the cyst is normal but yes, I should get it checked out by my OBGYN.
So Wednesday I go in at 10:30 to see my practicing doctor, the one who will actually be performing the Colonoscopy/Endoscopy. My goal is that he'll recognize my level of pain and hopefully decide that these scopes need to be pretty urgent. If not, than I don't know what to do. Maybe I'll go to another GI practice or check into the ER. But either way, out of all the many doctors I have seen, this is the most disrespected I have ever felt. I feel like my pain does not matter, I feel like my health does not matter, and I am sick and tired of this place and cannot wait until I do not have to go back. In which case I do hope there is in fact a day I do not have to go back to them
So to sum this up, within a month's time I have seen 3 different nurse practitioners at 3 different office locations, one doctor that is not my practicing doctor there, and I'm about to go in for another visit to see my actual doctor, for the first time since my intense pain has started. Not only that, if I had left the original scheduled appointments as is, I still wouldn't of had my second appointment until March 1st, meaning I wouldn't of had my CT scan until the end of the first week of March. This is CRAZY!!! I don't get how they throw me on painkillers and then not be able to do a Scope until May. I have way too many obligations before hand, a trip to Montana/Seattle, Cardiac Rehab, and a speech at the annual ARVD conference in Baltimore. I'm sorry but May will not work for me, I need to figure out what is wrong..NOW!
Anyone know someone who does Scopes on the black market?
Well, I went to the doctor today and it didn't go quite as expected. I still have to wait a few weeks to get my Scopes done, and this doctor said he is not in the business of pain management, so no more painkillers for me. I guess the waiting begins. I was also bought plane tickets to Montana and Seattle for March 12th-20th but I'm starting to get worried those plans are about to fall through. Luckily, I bought insurance, but I'm hoping I won't have to worry about that...we will see. The story of my life!
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