I haven't been able to write the last few weeks just out of sheer exhaustion. I've had a few things going on and ended up with several doctor's appointments almost everyday. I didn't really try to schedule 2 appointments or more on the same day, now scheduling appointments everyday is just too much.
Let me think. I had the stress test last week. Well, tried to anyway. I lasted a whole of 4 minutes at a moderate walking pace and just pooped out and couldn't go anymore. My heart rate shot up to 140 and my blood pressure rose to 140/90. Since they Cardio couldn't get a good reading they're going to induce me chemically. I'm kind of scared about that, but it's done at the hospital so I guess it's in a controlled environment with all the necessary equipment should anything happen.
I also started seeing an Allergist/Immunologist to test for Mast Cell Activation Syndrome. The allergist wanted to rule out a few other things like Eosinophilic Esophagitis and Celiac Disease, both of which have come back negative. I had a histamine blood test yesterday and today I'm collecting urine sample for the tryptase test (sorry TMI?). We'll see what happens. No matter what, food avoidance will be part of the solution and so far some of the foods I can't tolerate are: rice, corn, lactose, yams, wheat, eggs, tomatoes, shellfish, yogurt, chicken, ground beef. I also can't tolerate probiotics, atenolol, antibiotics except penicillin, NSAID's specifically Toradol, any narcotics or opioids...I'm sure I'm forgetting some stuff. The funny thing is he said Mast Cell Activation Syndrome is "very rare, extremely rare" and that "there are rumors that it is linked to EDS but that is extremely controversial". I'd like him to visit the Ehlers-Danlos National Foundation Forum and see that we seem to have our fare share per capita, extremely controversial or not!!! I'm not seeking this diagnosis specifically, I'm just seeking answers to why I have so many allergies. They have to be coming from somewhere. I think IBS is the Fibromyalgia of the stomach. I also need to be able to get nourishment because right now I'm severely undernourished and dehydrated, and weight has nothing to do with it; I will however note that I have lost 12 lbs in the last 4 weeks. I have been hearing nasogastric feeding a little too often lately...
While I was at the Allergist, he also had me do an Incentive Spirometry just to have a baseline reading on me. My reading came in pretty low. So he had the tech give me a breathing treatment with albuterol and repeat. It came in 10% worse than the previous reading. I have been feeling tight chested lately but not enough to need my inhaler, just tight chested in passing, like with walking or other activities. So, the reading might indicate the beginning of COPD. Geez, when it rains it pours! He didn't make any changes then, but said "we'll talk about it at my next visit".
It seems like EDS has taken EVERYTHING from me. It has affected just about every system in such a short amount of time. My head/brain with daily migraines with auras, mental fog and concentration problems because it affects neuron connections (neurons require collagen to make connections). Mood disorder due to a medical condition through dealing with an extremely painful chronic medical condition that waxes and wanes according to pain level and systems affected. It has affected my intestinal tract through GERD due to the laxity of the sphincter that controls the opening of the stomach. Gastroparesis, due to the laxity of the intestinal muscle which has caused poor nutrient absorption and slowed or stopped movement of waste. Lung and respiratory issues through difficulty breathing, shortness of breath, frequent respiratory infections and now symptoms of COPD. Diffuse joint pain: toes, ankles, knees, back, neck, shoulders, wrists, fingers. Also, easy bruising, intolerance to sun, De Quervain's, possible Mast Cell Activation Syndrome, food intolerances, multiple medication allergies. Osteoarthritis of the spine resulting in a fusion and the possibility of a future surgery...well, the list goes on.
I wish I could be more cheery. I wish I could just be one of those people that always looks on the bright side and doesn't let things get them down. But you know what? This is depressing. This does suck. Right now I'm thinking that I would love some chicken noodle soup from scratch becuase I make some mean chicken noodle soup. But, then I think, I have no energy to make it. It's not laziness, it's just outright no energy. It would require the effort to stay in the kitchen standing up, chopping things while I'm ready to fall asleep. I would rather not eat at all. Also, I can't really eat the chicken or the noodles so what's the point...Is this something that I should be cheery about? NO! It sucks!
Let's see how I feel tomorrow. Tomorrow might be better.
Tuesday, September 18, 2012
Tuesday, September 4, 2012
DISASTER, DISASTER, DISASTER
I've been gone for a while. Longer than I planned or wanted to because I've been going through a total chaotic mess. Disaster is more like it. This is the stuff that you see in movies and say "that would never happen in real life!" or would maybe say "she needs a Dr. House to find out what's wrong with her!". This is going to be a loooong posting so get comfy....
I had left off going to have some time away for R&R (rest and relaxation) after having had acid reflux surgery. The surgery had some complications where I was experiencing some low grade fevers around 99.5 or so and vomiting, even though it should be virtually impossible to vomit after this type of surgery because of it's very nature: the opening of the stomach is tightened. The surgeon had told me that because it was a very invasive surgery some swelling was normal so "just give it time, it WILL get better", emphasis on the WILL, followed by an almost mumbling to himself "I did a good surgery"...red flag!!!
During my R&R I kept vomiting and vomiting and vomiting...I vomited so much that my stomach and esophagus hurt and I cried. Because it hurt so much I decreased my food intake, but unknowingly also decreased my liquid intake. By the time I got back, I began to experience a continuous pounding headache that was unresponsive to my migraine medications (Imitrex, Frova and Tylenol); I had stopped going to the bathroom altogether, was having palpitations and experiencing fevers if 101+.
On the second day back I had a 6 week follow up with a new surgeon as the old one had left the practice. I explained about the continuous vomiting and decreased food and fluid intake, how tired I was feeling and the fever. My temperature was take in his office and was 101.4. He sent me for a CT scan of the abdomen looking for an abscess and ordered 1 liter of hydration. The scan was normal (of course) and after the fluid my headache decreased and I had a little more energy. He referred me to my Gastroenterologist.
I called the Gastroenterologist's office and the nurse said that I had been vomiting for way too long and had a high fever so I should go to the Emergency Room, they would be able to do blood work and look for infection. Since my fever kept rising and reached 101.8 I decided to go to the ER. They said I was severely dehydrated probably due to the prolonged fever and vomiting (duh!) so they gave me another liter of fluids IV, however the blood work did not reveal any infection. The only other thing they could do for me was give me Toradol to help ease the migraine pain. I was in the ER from 6:30 p-10:00p.
At 2:30a I woke up with palpitations. I thought they were related to POTS and the dehydration and didn't think much of them. I drank a large glass of water and went back to bed. At 4:00a I woke up with a sharp stabbing pain just below my rib cage that went all the way through my chest to my back. I took and extra dose of Prilosec and some antacids and waited a few minutes to see if it would help. It did not. The pain kept coming in sharper and sharper waves and moved up into my shoulder. At 4:40 a I woke up my husband and said I would call 911 because I thought it might be a heart attack. The EMT's came and hooked me up to an EKG machine and during one of the "waves" registered what they explained as a "cardiac event". During the ride to the hospital they gave me Nitroglycerin and wanted to give me Aspirin but couldn't because of my gastric issues. The Nitro just made me worse and that's when I really got bad! I couldn't breathe, my chest got really tight and my heart felt like it was going to come through my chest, I felt like throwing up, dizzy like I was going to pass out...I had been feeling all of these things, it just got worse with the Nitro. I could hear the EMT's saying "BP 130/PALP, heart rate 130", they put in an IV in the ambulance and there was blood everywhere because my blood pressure and heart rate was so high!
Finally we got to the hospital. I heard the EMT's turning me over to the nurse saying "she showed a mitral tear, whe gave Nytro, she got worse, then showed posterior mitral (something)". This reminded me of people who say they can hear everything that goes on in the operating room even while sedated. I couldn't really communicate, especially without the oxygen, but I could hear them. They administered another liter of fluids IV with Zofran for nausea, Tylenol and Zantac and repeated bloodwork. The blood work showed low potassium consistent with dehydration. I was given potassium tablets, which were pretty big and I reminded them that I was having problems swallowing and keeping things down. About 45min to 1 hr later they did another CT looking for a blood clot in the lung, there was no blood clot, but the potassium tablets were still lodged in my esophagus!!! Proof that solids were not passing through my esophagus. However, once they fluids were in, my blood pressure and heart rate stabilized; 3 liters of fluid in one day and the doctor said he though I was still dehydrated. At 10:00a I was sent home on a liquid only diet and a follow up with my Gastroenterologist to have a dilation of the Nissen wrap (acid reflux surgery).
I had the Nissen wrap dilation a week ago today, but I've had no improvement. The Gastroenterologist said he didn't think it would help and was also of the opinion that it was just post-surgical inflammation. After the dilation, which is done by endoscopy, he said that there was no inflammation, that the endoscope passed through the esophagus no difficulty or obstruction, he did perform the dilation anyway "but it's like a rubber band, you stretch a rubber band but it's going to come back. If it continues we could do an esophageal motility test." However, he did prove himself wrong in that there is no inflammation! He then said, "why did you have the surgery?" I told him, you were the one who suggested it. He said "I told you to talk to the surgeon and then come back to me (he never said that). I would have discouraged you from having the surgery." COMO, WHAT?!?! Then why send me to talk to the surgeon in the first place if you thought having the surgery was a bad idea?!?!
I spoke to my geneticist and my primary care doc, they think that an esophageal motility test is exactly what is needed. I called the Gastro's office back and said that all of these doc's thought the test needed to be performed because I was still vomiting and dehydrated and in metabolic ketoacidosis due to lack of nutrition, which is causing secondary tachycardia and possible heart condition. Guess what they said? That I needed to go back to the surgeon's office, in other words, he's not going to treat me!!! Meanwhile, the surgeon's office refers me to the Gastro's office because they're the ones who do this kind of test, so they don't want to treat me either!!! Lawsuit anyone??? I'll be going back to my primary care doc tomorrow so he can sort this out for me and either talk to these doc's himself or just order the test himself. While all of this is happening, I'm drinking Boost and Gatorade in order to get SOME nutrition..........AAAARRRRRGGGGGHHHHHH!!!!!
I have seen a Cardiologist and he's concerned about the symptoms I presented during and post the "cardiac event" and I'll be having an echocardiogram, sonogram of the carotid artery and a stress test...I hate stress tests! However, the migraine doctor started me on a low dose of Atenolol, which is sometimes used to reduce migraines, but I don't like! It making me itchy, even causing some pustules, my eyes itch and sometimes hurt, and it's made my auras worse! The Cardio says it's a good drug and it's okay to keep taking it, even without the results. The itching and pustules are enough reason to stop it (see MCAS below)!
On some other news, but just as disastrous...
My primary care doc thinks I might have Vascular Ehlers-Danlos; the bad EDS. This is the one that can result in rupture of the arteries and organs. My follow up with the geneticist is in December, so I'll bring it up then. This type has to be confirmed through genetic testing.
Some of the criteria for it are:
1. family history that includes arterial, intestinal and/or uterine rupture. My grandfather and uncle died of sudden aneurysms, my uncle was in his 40's, and my mother had a uterine rupture.
2. thin translucent skin, and you can see an entire highway of veins and arteries through my skin!
3. extensive bruising. I have also noticed that when I use the Imitrex injection, the only way Imitrex works for me, I have started to get huge hematomas on my thighs which didn't use to happen.
4. small joint hypermobility in the fingers.
I have also been doing some investigating in why Ian and I have so many allergic reactions. I learned of something called Mast Cell Activation Syndrome (MCAS) or Mastocystosis that goes hand-in-hand with EDS!!! In simple terms, the body is in a constant state of allergic reaction as there is an overabundance of mast cells. These can accumulate anywhere in the body: GI tract, liver, spleen, bone marrow, lymph node, skin and blood causing leukemia. Symptoms can include: itching, flushing, fainting/hypotensive shock/dizziness, abdominal pain, nausea and vomiting, diarrhea, fatigue, memory problems, depression, tachycardia/palpitations, breathing difficulty, osteoporosis, pain in the muscles and joints. Often it is missed because blood work is normal unless looking for MCAS and/or allergy related indicators. Initial treatment is composed of Zyrtec, Zantac and Epipen, and then tailored to the individual's specific manifestations. Ian was already on Zyrtec-D, and I started Zyrtec-D and Zantac because I have so many gastric complications. Through The Mastocystosis Society (tmsforthecure.org) I found The Bernstein Institute right here in Cincinnati, and it's supposed to be a leading research, diagnosis and treatment facilities in MCAS. I already have an appointment! I'll keep you updated.
So all-in-all, I'm depressed, frustrated, feeling hopeless and abandoned. I don't dismiss the value and severity of any medical disease, we're all in the same boat, but would I get more empathy if I had Cancer because it's a known disease? Diabetes even if I were in renal failure? I feel just as much pain and experience just as many complications, but because these doctors cannot gauge my pain and my complications in comparison to these other well know conditions they loose their bedside manners, their healing touch, their compassion. They pass the buck and forget about me, about the patient, about the person that is in distress and asking for their help. They don't got the extra mile perhaps because their liability insurance will also be extended that extra bit. Where does that leave us, the ones that don't fit neatly into a category of well know diseases, the ones that are classified as "orphan diseases"? Orphans...that's exactly right...orphans.
I had left off going to have some time away for R&R (rest and relaxation) after having had acid reflux surgery. The surgery had some complications where I was experiencing some low grade fevers around 99.5 or so and vomiting, even though it should be virtually impossible to vomit after this type of surgery because of it's very nature: the opening of the stomach is tightened. The surgeon had told me that because it was a very invasive surgery some swelling was normal so "just give it time, it WILL get better", emphasis on the WILL, followed by an almost mumbling to himself "I did a good surgery"...red flag!!!
During my R&R I kept vomiting and vomiting and vomiting...I vomited so much that my stomach and esophagus hurt and I cried. Because it hurt so much I decreased my food intake, but unknowingly also decreased my liquid intake. By the time I got back, I began to experience a continuous pounding headache that was unresponsive to my migraine medications (Imitrex, Frova and Tylenol); I had stopped going to the bathroom altogether, was having palpitations and experiencing fevers if 101+.
On the second day back I had a 6 week follow up with a new surgeon as the old one had left the practice. I explained about the continuous vomiting and decreased food and fluid intake, how tired I was feeling and the fever. My temperature was take in his office and was 101.4. He sent me for a CT scan of the abdomen looking for an abscess and ordered 1 liter of hydration. The scan was normal (of course) and after the fluid my headache decreased and I had a little more energy. He referred me to my Gastroenterologist.
I called the Gastroenterologist's office and the nurse said that I had been vomiting for way too long and had a high fever so I should go to the Emergency Room, they would be able to do blood work and look for infection. Since my fever kept rising and reached 101.8 I decided to go to the ER. They said I was severely dehydrated probably due to the prolonged fever and vomiting (duh!) so they gave me another liter of fluids IV, however the blood work did not reveal any infection. The only other thing they could do for me was give me Toradol to help ease the migraine pain. I was in the ER from 6:30 p-10:00p.
At 2:30a I woke up with palpitations. I thought they were related to POTS and the dehydration and didn't think much of them. I drank a large glass of water and went back to bed. At 4:00a I woke up with a sharp stabbing pain just below my rib cage that went all the way through my chest to my back. I took and extra dose of Prilosec and some antacids and waited a few minutes to see if it would help. It did not. The pain kept coming in sharper and sharper waves and moved up into my shoulder. At 4:40 a I woke up my husband and said I would call 911 because I thought it might be a heart attack. The EMT's came and hooked me up to an EKG machine and during one of the "waves" registered what they explained as a "cardiac event". During the ride to the hospital they gave me Nitroglycerin and wanted to give me Aspirin but couldn't because of my gastric issues. The Nitro just made me worse and that's when I really got bad! I couldn't breathe, my chest got really tight and my heart felt like it was going to come through my chest, I felt like throwing up, dizzy like I was going to pass out...I had been feeling all of these things, it just got worse with the Nitro. I could hear the EMT's saying "BP 130/PALP, heart rate 130", they put in an IV in the ambulance and there was blood everywhere because my blood pressure and heart rate was so high!
Finally we got to the hospital. I heard the EMT's turning me over to the nurse saying "she showed a mitral tear, whe gave Nytro, she got worse, then showed posterior mitral (something)". This reminded me of people who say they can hear everything that goes on in the operating room even while sedated. I couldn't really communicate, especially without the oxygen, but I could hear them. They administered another liter of fluids IV with Zofran for nausea, Tylenol and Zantac and repeated bloodwork. The blood work showed low potassium consistent with dehydration. I was given potassium tablets, which were pretty big and I reminded them that I was having problems swallowing and keeping things down. About 45min to 1 hr later they did another CT looking for a blood clot in the lung, there was no blood clot, but the potassium tablets were still lodged in my esophagus!!! Proof that solids were not passing through my esophagus. However, once they fluids were in, my blood pressure and heart rate stabilized; 3 liters of fluid in one day and the doctor said he though I was still dehydrated. At 10:00a I was sent home on a liquid only diet and a follow up with my Gastroenterologist to have a dilation of the Nissen wrap (acid reflux surgery).
I had the Nissen wrap dilation a week ago today, but I've had no improvement. The Gastroenterologist said he didn't think it would help and was also of the opinion that it was just post-surgical inflammation. After the dilation, which is done by endoscopy, he said that there was no inflammation, that the endoscope passed through the esophagus no difficulty or obstruction, he did perform the dilation anyway "but it's like a rubber band, you stretch a rubber band but it's going to come back. If it continues we could do an esophageal motility test." However, he did prove himself wrong in that there is no inflammation! He then said, "why did you have the surgery?" I told him, you were the one who suggested it. He said "I told you to talk to the surgeon and then come back to me (he never said that). I would have discouraged you from having the surgery." COMO, WHAT?!?! Then why send me to talk to the surgeon in the first place if you thought having the surgery was a bad idea?!?!
I spoke to my geneticist and my primary care doc, they think that an esophageal motility test is exactly what is needed. I called the Gastro's office back and said that all of these doc's thought the test needed to be performed because I was still vomiting and dehydrated and in metabolic ketoacidosis due to lack of nutrition, which is causing secondary tachycardia and possible heart condition. Guess what they said? That I needed to go back to the surgeon's office, in other words, he's not going to treat me!!! Meanwhile, the surgeon's office refers me to the Gastro's office because they're the ones who do this kind of test, so they don't want to treat me either!!! Lawsuit anyone??? I'll be going back to my primary care doc tomorrow so he can sort this out for me and either talk to these doc's himself or just order the test himself. While all of this is happening, I'm drinking Boost and Gatorade in order to get SOME nutrition..........AAAARRRRRGGGGGHHHHHH!!!!!
I have seen a Cardiologist and he's concerned about the symptoms I presented during and post the "cardiac event" and I'll be having an echocardiogram, sonogram of the carotid artery and a stress test...I hate stress tests! However, the migraine doctor started me on a low dose of Atenolol, which is sometimes used to reduce migraines, but I don't like! It making me itchy, even causing some pustules, my eyes itch and sometimes hurt, and it's made my auras worse! The Cardio says it's a good drug and it's okay to keep taking it, even without the results. The itching and pustules are enough reason to stop it (see MCAS below)!
On some other news, but just as disastrous...
My primary care doc thinks I might have Vascular Ehlers-Danlos; the bad EDS. This is the one that can result in rupture of the arteries and organs. My follow up with the geneticist is in December, so I'll bring it up then. This type has to be confirmed through genetic testing.
Some of the criteria for it are:
1. family history that includes arterial, intestinal and/or uterine rupture. My grandfather and uncle died of sudden aneurysms, my uncle was in his 40's, and my mother had a uterine rupture.
2. thin translucent skin, and you can see an entire highway of veins and arteries through my skin!
3. extensive bruising. I have also noticed that when I use the Imitrex injection, the only way Imitrex works for me, I have started to get huge hematomas on my thighs which didn't use to happen.
4. small joint hypermobility in the fingers.
I have also been doing some investigating in why Ian and I have so many allergic reactions. I learned of something called Mast Cell Activation Syndrome (MCAS) or Mastocystosis that goes hand-in-hand with EDS!!! In simple terms, the body is in a constant state of allergic reaction as there is an overabundance of mast cells. These can accumulate anywhere in the body: GI tract, liver, spleen, bone marrow, lymph node, skin and blood causing leukemia. Symptoms can include: itching, flushing, fainting/hypotensive shock/dizziness, abdominal pain, nausea and vomiting, diarrhea, fatigue, memory problems, depression, tachycardia/palpitations, breathing difficulty, osteoporosis, pain in the muscles and joints. Often it is missed because blood work is normal unless looking for MCAS and/or allergy related indicators. Initial treatment is composed of Zyrtec, Zantac and Epipen, and then tailored to the individual's specific manifestations. Ian was already on Zyrtec-D, and I started Zyrtec-D and Zantac because I have so many gastric complications. Through The Mastocystosis Society (tmsforthecure.org) I found The Bernstein Institute right here in Cincinnati, and it's supposed to be a leading research, diagnosis and treatment facilities in MCAS. I already have an appointment! I'll keep you updated.
So all-in-all, I'm depressed, frustrated, feeling hopeless and abandoned. I don't dismiss the value and severity of any medical disease, we're all in the same boat, but would I get more empathy if I had Cancer because it's a known disease? Diabetes even if I were in renal failure? I feel just as much pain and experience just as many complications, but because these doctors cannot gauge my pain and my complications in comparison to these other well know conditions they loose their bedside manners, their healing touch, their compassion. They pass the buck and forget about me, about the patient, about the person that is in distress and asking for their help. They don't got the extra mile perhaps because their liability insurance will also be extended that extra bit. Where does that leave us, the ones that don't fit neatly into a category of well know diseases, the ones that are classified as "orphan diseases"? Orphans...that's exactly right...orphans.
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