experience of a PE
I decided after reading other people's experiences that I'd like to right a Blog about my own. Thanks for the insightfulness of Brian's post even though it was years past, thanks to the technology of the ' internet' it is there for us all to read years down the road. http://topeornottope.wordpress.com/
I hope this may be useful to other people that may be going through the same or similar symptoms, and also help us realize to be persistent with doctors if we are not getting results we seek. I am not a writer, so hopefully am not a bore.
I can say my experience began Saturday, July 13th. That night as I am lying in bed trying to sleep, my back around the bottom ofmy shoulder blade is smasm’ing, like nerves twitching. It hurts to lie on my back or directly on either side I have had a lot of back pains before, however this was like nothing I had had before. It was much more painful, and continuous and the spasm’ing was irritating, like spiders crawling in your skin. After drugs and Ice and hours of rolling around I finally got a few hours of sleep in a strange awkward position lying on my stomach with my head hanging off the bed. In the morning as I got up my back was sore, like the results of a Charlie horse. Along with my neck feeling pinched. Probably from sleeping weird. I also noticed during the day that I was somewhat short of breath, it hurt my back to take a deep breath. A new urgent care place opened up just around the corner from my house, so being a Sunday I decided to try it out. I went in with two complaints. Back and Neck pain and some shortness of breath, I had also been coughing, but attributed that to allergies. When I went in I was running a slight fever that I didn't know about and my blood pressure and pulse were a little high, my pulse/ ox was 99, in normal range. The doctor (PA)on dutycontributed it to muscle spasms and prescribed me a muscle relaxer. So I got that filled and took that med that night. The next day my back and neck pain gone. Yeah!!
Tuesday July 16th. I had a site visit on a project that was 4-story wood frame, framed up. It was a typical Texas summer day around 110 degrees with no wind, so the interior of this building was HOT! I noticed walking up the stairs that I was short of breath. I contributed to the heat and didn't really put any value to it. Later that day I started feeling not well, the coughing was much worse.
By Wednesday morning I was feeling crappy. I was running a pretty high fever by the time I got to work, but I had a big client meeting and couldn't call in sick. I let my boss know I was feeling crappy and may not make it through our 6 hour long meeting. She said take drugs and toughen up. The meeting went well, and I focused completely on the topics instead of my health, and by the time we got out at5 PM I sat down at my desk and was exhausted. I called in sick the next day thinking I caught a bug and stayed home and slept all day. My cough by this point was full blown and my back and side were killing me. I attributed this to the coughing.
Thursday, July 18. I went to work Thursday and was noticing sitting at my desk I was short of breath. This was concerning,I felt like I was having to concentrate on breathing throughout the day or I might pass out, like somehow I was forgetting to breathor something. That evening I decided to go back into Urgent care. I saw the same PA and RN that was on staff on Sunday and told them the muscle relaxer helped but I am much more short of breath, and coughing worse. He looked at me and was thinking, she looks healthy surely it’s not Pneumonia, but we decided to take a chest X-ray in case it was Pneumonia.The RNtook the X-ray twice and thought something was wrong with the machine as my right lung was hardly showing up on it, and it was solid white on the bottom of the lung (meaning fluid). My diaphragm could not be seen, and the top part (chest side)of both of my lungs were not inflating.The PAwas worried and concerned, but he didn't have experience reading x-rays and decided to wait for the radiologist reading. It was 7 PM and they were closing, we waited a few minutes, but he said come back in the morning and they'd have the report. He said if it gets to bad go to the ER.(duh).
So I came by in the morning, work was busy, so I didn't want to miss time off. He got the report and said that it was Pneumonia. Ugh. I have never had Pneumonia or any other lung problems. It’s weird to pick it up out of the blue like that. He gave me an antibiotic and He said don't go to work, take it easy. Well hearing that I went to work to bring some things home to stay home for a few days. He prescribed 5 days of a Z-pak and said it will continue working for 5 days after and it will take a few weeks to start feeling better. My cough got worse, the pain in my ribs, back andside was much worse and I started having a feeling of friction in my lungs. It felt like breathing in a porcupine when I took a deep breathe.(the only way I can describe it)
After 10 days I was not feeling any better, except the fever was gone, so I went back in. Saw a different doc and he prescribed 7 days ofLevaquin. He didn't really re-assess the diagnosis of the previous doctor, or have any empathy toward my condition. He said this is the best antibiotic for this type ofPneumonia and if this doesn't do it and I'd need to see a pulmonologist.
Wednesday July 31. As work was crazy busy, I was still working 50 hours a week and had a trip to KC scheduled. We flew on a plane a two+ hour red-eye flight to KC airport. Had a meeting, had lunch and got back on the plane to return. I was still out of breath and coughing some, I pretty much did not have enough breath to do a lot of talking, and my colleague luckily was able to run the meeting.
Friday August 2nd, my side was in so much pain every breath and cough was Exruciating.I was having to try to subside the coughswhich just made it worse when they came.I didn't know what to do or who to see, as urgent care wasn't helping and my MD was too difficult to get an appt. I made an appointment with the chiro thinking it would help my back. As I am heading down to the car I start coughing, and the muscle in my side just spasms up to where I couldn't deflate my lung. I start to panic. As I get in the car, the car won't start. Even better. I get out and am sitting on the curb just trying to catch abreath. I text several people in the office to see if they will come down and take me to the ER. Luckily one of them does. By the time we get there the muscles had relaxed some. First thing they get me in and do a EKG. The paramedics make me lie back on the gurney which is painful as my back hurts just to touch. They rule out heart as the issue and take me through Triage, then send me out to the waiting room. Waiting 3 hours in a stiff cold chair, and telling all my symptoms to a PA, they then take me back to get an x-ray and see an MD. X-ray done, MD sees me and they determine it is still just residual symptoms of Pneumonia. They say the X-ray appears the pneumonia is clearing. (Not sure how they thought it looked before) they didn't show it to me, or describe what they saw. I am sent home with an inhaler, and told to wait a few more weeks and I will start feeling better. Thanks For an expensive doctor’s visit for nothing.
I had a few days off, and followed up with my Primary care on August 5th. He gave me an inhaler and an Asthma inhaler to help with the wheezing, thinking the lungs are just still feeling irritated, and my back pain is due to coughing.
Three weeks later now Aug 26, still with symptoms I go back to the urgent care who told me the same thing as the MD and prescribed me an asthma inhaler. They did another x-ray and it came back much improved from the first one. He was excited to show me my diaphragm and full outline of my lungs in the X-ray. Frustrated I resigned to wait it out hoping I'd feel better soon.
Within a few weeks, the wheezing and Pain subside, and the coughing is almost gone. Hallelujah!!
Monday, September 23rd. The wheezing feeling returns and the pain in my side by my lower ribs returns. I call and make an apt with MyMD for Thursday, their next available appt. something is definitely going on, and just no one can figure it out. It doesn’t make sense that Pneumonia would return.
September 25th, I feel like I need to get back in shape after not exercising for months from feeling sobad, I go to my usual park that has a 2 mile track. I start to walk. I try to run. I don't have enough breath to run. After a mile, I am too fatigued to continue. I walk back to my car (a mile away) My fastest mile ever as I was anxious to end it. When I get home I start a hacking cough. I feel like my lung is trying to get out.
Thursday September 26th, I have the day off but havea CE class. I am walking into the building and am feeling some out of breath, I go slow and breathe deeply. I have a scratchy itchy throat, but am able to keep the coughing subsided with cough drops sinceI have stock piled them through the months. I go to my appointment in the afternoon. I see a PA that I have not met before, as the MD is rarely in the office seeing patients. She listens to my complaints and the long story and ask questions none of the other docs asked. 'Does it hurt to take a deep breath' 'Have you coughed up any blood or sputum. What are you doing when you are out of breath? Are you short of breath sitting? Etc. She explains my lungs may be irritated, it might be allergies, and prescribes an asthma inhaler and singular, but as we are leaving the room ,she goes, let's schedule a CT also just to make sure it's not a clot. I was like HMM, ok. She said let's do it today. So the nurse calls in and schedules the CT for an hour out. So I go there, and do the CT with cough drops trying not to cough. It's done in 15 min and the tech sends me to the waiting room. She said she wanted the radiologist to makes sure they got all the pictures.
The Radiologist calls me back to the hallway and tells me, let's sit down. I am in a hallway, I guess there's no office. So(I) pull up some chairs (he'stelling me I'mill and I have to get my ownchair, funny in hind-site)and he tells me I have a clot in my Right lung. I ask him if this is related to Pneumonia, or has this been going on for a while and I don't know the role of the radiologists, are they MD’s. He didn't seem to know the answers so I didn't press him. But he tells me I need to go straight to the ER, and I can't drive myself there. So I call my significant other to come and get me, and after discussing which hospital, we drive to the ER where my primary care doctor is associated with, which is across the street from his office. I walk in (unassisted) and tell them I was told, I need to come here because I have a clot. The RN reads the report and puts me in a wheelchair. At this point I was not aware at how serious this was.
I am taken straight back to a room and they start putting holes in me with an attempt at starting an IV, and I go through the routine of answering questions for the RN, PA, a handsome MD, and then get to see an on-callpulmonologist. He's like so you have PE. And I am like, ‘no just a clot they tell me’. Well once they say Pulmonary Embolism. That sounds a lot worse. He reads the films (As he calls them) on CDand tells me there's a clot in both lower lobes of my lungs. Wow. At first I thought he was mistaken, since the radiologist only said one. But the next day the MD confirmed this. We went through my risk factors, and really the only ones I have are that I fly on Airplanes, and I am (was) on Birth control. So they said off birth control immediately.
After 3 hours to get me admitted and into a room I am all strapped up with IV, oxygen, pulse/ ox monitor, heart monitor with leads, nice hospital gown, etc. I am in my room exhausted, and hungry as I missed dinner, but adrenalized and can't certainly get any sleep in this strange place on a bed that causes only pain when I lie on my back.
At least I am given an awesome pain killer. Extra strength Tylenol. No really, it worked very well.
I had the following day off of work already as a vacation day. Great vacation in the hospital. Turns out my boyfriend had a mission trip scheduled to Africa and his flight was the very next day. Wow. What timing there is in life? We were scrabbling trying to figure out all the logistics, who to care for the dog, how to get him to the airport, etc.
The MD comes to see me the next day and lets me know what bad shape I was in. I was only using about 50% of my lungs, both lower lobes occluded.He (we) were very grateful his PA decided todo the scan. Hesaid if I hadn't had such good lung function,if I was a smoker or had Asthma, or was not in such good shape. Icould've died from this. Not manypeople can function daily for months on 50% lung function.CT was the only way that PEcould've been diagnosed.What appears to be Pneumonia in the scans (looks like dryer lint)he believed is just inflammation of the lung tissue from lack of blood. He thinks that the original diagnosis was incorrectand the whole time I was battling PE. He said it doesn’t make much sense that a young healthy person randomly contracts pneumonia. And I agreed with that, but stranger things can happen. Like a young healthy person getting PE. However he can't explain the few weeks that I was feeling better. I will be on Coumadin (warfarin) for 3-6 months with a re-scan at that point. He tested me for typical genetic clotting disorders and I was negative for the most common ones. Some of them I will have to be tested for once off of the anti-coagulants.
So the hospital stay pretty much wasEARLY morning blood work, Lovenex twice a day which was ashot in the stomach that burns like crazy and leaves a welt and knot. Tylenol every 6 hours, I was originally on Levaquinby IVfor Pneumonia, but once that was ruled out they stopped that, Warfarin, and bad food. My pulse/ox stayed pretty constant at 97-99% in normal range, however every time I got up to pee. Which was often when on IV, my heart rate shot up. Pretty much my pulse was compensatingto get more blood to my lungs for the areas that weren't gettingoxygenated. The doc described it as oxygen cells coming in, and they need taxi's (red blood cells) to deliver them, but there wasn't enough taxis there. They increased my Lovenox dosage as my INR wasn't increasing. The doc said it takes 3 days to absorb, so really they shouldn't have seen a difference yet. On the 2nd day it was 1.1 on the third day it was 4. The pulmonologist thought it might be a false reading, but the day I checked out (Sunday) it was 6.6. They were trying for between 2 and 3.
So home on Sunday, very tired. I was still active as I was, but now knowing my pulse shoots up to compensate I tried to take it easy. Also, activity exacerbates heavy coughing. The coughing was awful and painful, and tiring. My ribs and all my coughing muscles were totally worn out. The coughing went on for a few weeks, but did finally subside. By about week 3 I was feeling better.
One day my first week back to work I was feeling not right. Like my head was heavy andmy hands were weak, like spaghetti. I called the doctor andthe RNhad me check by blood pressure. It was high. My INR came back as 6.6 so she said the arteries were clamping down on the thin blood. So then I was put on a blood pressure med which causes constipation. FUN. Then on laxative to battle that side effect. Luckily once my INR leveled out I went off of the blood pressure meds.
I had a plane ticket for vacation to Germany exactly 4 weeks after I was admitted to the hospital. Doc said maybe if we can get your blood leveled out I can go. There was not a risk of the clot moving as it had gone through the lungs and hand nowhere else to go. so I waited to see. They let me fly on a 10 hour flight, I was little surprised as that was one of my risk factors.
So now it is January 8. Three and half months out. I have had regular INR test done at the Lab. It has pretty much stabilized on the dose I am on between at the desired 2-3 range. I use the quest APP and it send it to me electronically in 3-4 days. I have mostly been feeling better, but I have started having some returning of the symptoms. I have been reading peoples post and blogs and some support sites to get some advice on what is ‘normal’ and what to expect. The doc doesn’t seem to give me much insight too far into the future on what to expect. So we will just wait it out and see . . .
Following Bryan’s lead on his closing. .
Epilogue
It isn’t lost on me at this point that I’m extremely lucky to be alive. Let’s review the fortuitous events:
Fortuitous event #1: PA ordered a CT scan
Fortuitous event #2: Clot was not a saddle clot
Fortuitous event #3: was able to go on vacation.
Fortuitous event #4: Was able to change jobs and insurance without much of a hiccup.
Non –fortuitous- no more birth control or hormone replacement ever.
In retrospect as advice. You know your body better than anyone, and to be persistent with doctors and medical staff if you are not getting answers or feel like the diagnosis is not correct.
PE is commonly mis-diagnosed as ‘panic attack’ pneumonia, or heart attack. The symptoms of these three are all very similar.
Now I know the symptoms, Symptoms include:
Chest pain-Under the breastbone or on one side, pain in the back or side –also referred to as ‘flank pain’, Most oftenfeels sharp or stabbing, May also be described as a burning, aching, or dull, heavy sensation. Usually is worse when a deep breath is taken.
Sudden coughing, may cough up fluid or blood
Rapid breath, rapid heart rate
Anxiety
Bluish skin discoloration
Clammy skin
Dizziness
Leg pain, redness, or swelling
Lightheadedness or fainting
Low blood pressure
Sweating
Wheezing
I hope this may be useful to other people that may be going through the same or similar symptoms, and also help us realize to be persistent with doctors if we are not getting results we seek. I am not a writer, so hopefully am not a bore.
I can say my experience began Saturday, July 13th. That night as I am lying in bed trying to sleep, my back around the bottom ofmy shoulder blade is smasm’ing, like nerves twitching. It hurts to lie on my back or directly on either side I have had a lot of back pains before, however this was like nothing I had had before. It was much more painful, and continuous and the spasm’ing was irritating, like spiders crawling in your skin. After drugs and Ice and hours of rolling around I finally got a few hours of sleep in a strange awkward position lying on my stomach with my head hanging off the bed. In the morning as I got up my back was sore, like the results of a Charlie horse. Along with my neck feeling pinched. Probably from sleeping weird. I also noticed during the day that I was somewhat short of breath, it hurt my back to take a deep breath. A new urgent care place opened up just around the corner from my house, so being a Sunday I decided to try it out. I went in with two complaints. Back and Neck pain and some shortness of breath, I had also been coughing, but attributed that to allergies. When I went in I was running a slight fever that I didn't know about and my blood pressure and pulse were a little high, my pulse/ ox was 99, in normal range. The doctor (PA)on dutycontributed it to muscle spasms and prescribed me a muscle relaxer. So I got that filled and took that med that night. The next day my back and neck pain gone. Yeah!!
Tuesday July 16th. I had a site visit on a project that was 4-story wood frame, framed up. It was a typical Texas summer day around 110 degrees with no wind, so the interior of this building was HOT! I noticed walking up the stairs that I was short of breath. I contributed to the heat and didn't really put any value to it. Later that day I started feeling not well, the coughing was much worse.
By Wednesday morning I was feeling crappy. I was running a pretty high fever by the time I got to work, but I had a big client meeting and couldn't call in sick. I let my boss know I was feeling crappy and may not make it through our 6 hour long meeting. She said take drugs and toughen up. The meeting went well, and I focused completely on the topics instead of my health, and by the time we got out at5 PM I sat down at my desk and was exhausted. I called in sick the next day thinking I caught a bug and stayed home and slept all day. My cough by this point was full blown and my back and side were killing me. I attributed this to the coughing.
Thursday, July 18. I went to work Thursday and was noticing sitting at my desk I was short of breath. This was concerning,I felt like I was having to concentrate on breathing throughout the day or I might pass out, like somehow I was forgetting to breathor something. That evening I decided to go back into Urgent care. I saw the same PA and RN that was on staff on Sunday and told them the muscle relaxer helped but I am much more short of breath, and coughing worse. He looked at me and was thinking, she looks healthy surely it’s not Pneumonia, but we decided to take a chest X-ray in case it was Pneumonia.The RNtook the X-ray twice and thought something was wrong with the machine as my right lung was hardly showing up on it, and it was solid white on the bottom of the lung (meaning fluid). My diaphragm could not be seen, and the top part (chest side)of both of my lungs were not inflating.The PAwas worried and concerned, but he didn't have experience reading x-rays and decided to wait for the radiologist reading. It was 7 PM and they were closing, we waited a few minutes, but he said come back in the morning and they'd have the report. He said if it gets to bad go to the ER.(duh).
So I came by in the morning, work was busy, so I didn't want to miss time off. He got the report and said that it was Pneumonia. Ugh. I have never had Pneumonia or any other lung problems. It’s weird to pick it up out of the blue like that. He gave me an antibiotic and He said don't go to work, take it easy. Well hearing that I went to work to bring some things home to stay home for a few days. He prescribed 5 days of a Z-pak and said it will continue working for 5 days after and it will take a few weeks to start feeling better. My cough got worse, the pain in my ribs, back andside was much worse and I started having a feeling of friction in my lungs. It felt like breathing in a porcupine when I took a deep breathe.(the only way I can describe it)
After 10 days I was not feeling any better, except the fever was gone, so I went back in. Saw a different doc and he prescribed 7 days ofLevaquin. He didn't really re-assess the diagnosis of the previous doctor, or have any empathy toward my condition. He said this is the best antibiotic for this type ofPneumonia and if this doesn't do it and I'd need to see a pulmonologist.
Wednesday July 31. As work was crazy busy, I was still working 50 hours a week and had a trip to KC scheduled. We flew on a plane a two+ hour red-eye flight to KC airport. Had a meeting, had lunch and got back on the plane to return. I was still out of breath and coughing some, I pretty much did not have enough breath to do a lot of talking, and my colleague luckily was able to run the meeting.
Friday August 2nd, my side was in so much pain every breath and cough was Exruciating.I was having to try to subside the coughswhich just made it worse when they came.I didn't know what to do or who to see, as urgent care wasn't helping and my MD was too difficult to get an appt. I made an appointment with the chiro thinking it would help my back. As I am heading down to the car I start coughing, and the muscle in my side just spasms up to where I couldn't deflate my lung. I start to panic. As I get in the car, the car won't start. Even better. I get out and am sitting on the curb just trying to catch abreath. I text several people in the office to see if they will come down and take me to the ER. Luckily one of them does. By the time we get there the muscles had relaxed some. First thing they get me in and do a EKG. The paramedics make me lie back on the gurney which is painful as my back hurts just to touch. They rule out heart as the issue and take me through Triage, then send me out to the waiting room. Waiting 3 hours in a stiff cold chair, and telling all my symptoms to a PA, they then take me back to get an x-ray and see an MD. X-ray done, MD sees me and they determine it is still just residual symptoms of Pneumonia. They say the X-ray appears the pneumonia is clearing. (Not sure how they thought it looked before) they didn't show it to me, or describe what they saw. I am sent home with an inhaler, and told to wait a few more weeks and I will start feeling better. Thanks For an expensive doctor’s visit for nothing.
I had a few days off, and followed up with my Primary care on August 5th. He gave me an inhaler and an Asthma inhaler to help with the wheezing, thinking the lungs are just still feeling irritated, and my back pain is due to coughing.
Three weeks later now Aug 26, still with symptoms I go back to the urgent care who told me the same thing as the MD and prescribed me an asthma inhaler. They did another x-ray and it came back much improved from the first one. He was excited to show me my diaphragm and full outline of my lungs in the X-ray. Frustrated I resigned to wait it out hoping I'd feel better soon.
Within a few weeks, the wheezing and Pain subside, and the coughing is almost gone. Hallelujah!!
Monday, September 23rd. The wheezing feeling returns and the pain in my side by my lower ribs returns. I call and make an apt with MyMD for Thursday, their next available appt. something is definitely going on, and just no one can figure it out. It doesn’t make sense that Pneumonia would return.
September 25th, I feel like I need to get back in shape after not exercising for months from feeling sobad, I go to my usual park that has a 2 mile track. I start to walk. I try to run. I don't have enough breath to run. After a mile, I am too fatigued to continue. I walk back to my car (a mile away) My fastest mile ever as I was anxious to end it. When I get home I start a hacking cough. I feel like my lung is trying to get out.
Thursday September 26th, I have the day off but havea CE class. I am walking into the building and am feeling some out of breath, I go slow and breathe deeply. I have a scratchy itchy throat, but am able to keep the coughing subsided with cough drops sinceI have stock piled them through the months. I go to my appointment in the afternoon. I see a PA that I have not met before, as the MD is rarely in the office seeing patients. She listens to my complaints and the long story and ask questions none of the other docs asked. 'Does it hurt to take a deep breath' 'Have you coughed up any blood or sputum. What are you doing when you are out of breath? Are you short of breath sitting? Etc. She explains my lungs may be irritated, it might be allergies, and prescribes an asthma inhaler and singular, but as we are leaving the room ,she goes, let's schedule a CT also just to make sure it's not a clot. I was like HMM, ok. She said let's do it today. So the nurse calls in and schedules the CT for an hour out. So I go there, and do the CT with cough drops trying not to cough. It's done in 15 min and the tech sends me to the waiting room. She said she wanted the radiologist to makes sure they got all the pictures.
The Radiologist calls me back to the hallway and tells me, let's sit down. I am in a hallway, I guess there's no office. So(I) pull up some chairs (he'stelling me I'mill and I have to get my ownchair, funny in hind-site)and he tells me I have a clot in my Right lung. I ask him if this is related to Pneumonia, or has this been going on for a while and I don't know the role of the radiologists, are they MD’s. He didn't seem to know the answers so I didn't press him. But he tells me I need to go straight to the ER, and I can't drive myself there. So I call my significant other to come and get me, and after discussing which hospital, we drive to the ER where my primary care doctor is associated with, which is across the street from his office. I walk in (unassisted) and tell them I was told, I need to come here because I have a clot. The RN reads the report and puts me in a wheelchair. At this point I was not aware at how serious this was.
I am taken straight back to a room and they start putting holes in me with an attempt at starting an IV, and I go through the routine of answering questions for the RN, PA, a handsome MD, and then get to see an on-callpulmonologist. He's like so you have PE. And I am like, ‘no just a clot they tell me’. Well once they say Pulmonary Embolism. That sounds a lot worse. He reads the films (As he calls them) on CDand tells me there's a clot in both lower lobes of my lungs. Wow. At first I thought he was mistaken, since the radiologist only said one. But the next day the MD confirmed this. We went through my risk factors, and really the only ones I have are that I fly on Airplanes, and I am (was) on Birth control. So they said off birth control immediately.
After 3 hours to get me admitted and into a room I am all strapped up with IV, oxygen, pulse/ ox monitor, heart monitor with leads, nice hospital gown, etc. I am in my room exhausted, and hungry as I missed dinner, but adrenalized and can't certainly get any sleep in this strange place on a bed that causes only pain when I lie on my back.
At least I am given an awesome pain killer. Extra strength Tylenol. No really, it worked very well.
I had the following day off of work already as a vacation day. Great vacation in the hospital. Turns out my boyfriend had a mission trip scheduled to Africa and his flight was the very next day. Wow. What timing there is in life? We were scrabbling trying to figure out all the logistics, who to care for the dog, how to get him to the airport, etc.
The MD comes to see me the next day and lets me know what bad shape I was in. I was only using about 50% of my lungs, both lower lobes occluded.He (we) were very grateful his PA decided todo the scan. Hesaid if I hadn't had such good lung function,if I was a smoker or had Asthma, or was not in such good shape. Icould've died from this. Not manypeople can function daily for months on 50% lung function.CT was the only way that PEcould've been diagnosed.What appears to be Pneumonia in the scans (looks like dryer lint)he believed is just inflammation of the lung tissue from lack of blood. He thinks that the original diagnosis was incorrectand the whole time I was battling PE. He said it doesn’t make much sense that a young healthy person randomly contracts pneumonia. And I agreed with that, but stranger things can happen. Like a young healthy person getting PE. However he can't explain the few weeks that I was feeling better. I will be on Coumadin (warfarin) for 3-6 months with a re-scan at that point. He tested me for typical genetic clotting disorders and I was negative for the most common ones. Some of them I will have to be tested for once off of the anti-coagulants.
So the hospital stay pretty much wasEARLY morning blood work, Lovenex twice a day which was ashot in the stomach that burns like crazy and leaves a welt and knot. Tylenol every 6 hours, I was originally on Levaquinby IVfor Pneumonia, but once that was ruled out they stopped that, Warfarin, and bad food. My pulse/ox stayed pretty constant at 97-99% in normal range, however every time I got up to pee. Which was often when on IV, my heart rate shot up. Pretty much my pulse was compensatingto get more blood to my lungs for the areas that weren't gettingoxygenated. The doc described it as oxygen cells coming in, and they need taxi's (red blood cells) to deliver them, but there wasn't enough taxis there. They increased my Lovenox dosage as my INR wasn't increasing. The doc said it takes 3 days to absorb, so really they shouldn't have seen a difference yet. On the 2nd day it was 1.1 on the third day it was 4. The pulmonologist thought it might be a false reading, but the day I checked out (Sunday) it was 6.6. They were trying for between 2 and 3.
So home on Sunday, very tired. I was still active as I was, but now knowing my pulse shoots up to compensate I tried to take it easy. Also, activity exacerbates heavy coughing. The coughing was awful and painful, and tiring. My ribs and all my coughing muscles were totally worn out. The coughing went on for a few weeks, but did finally subside. By about week 3 I was feeling better.
One day my first week back to work I was feeling not right. Like my head was heavy andmy hands were weak, like spaghetti. I called the doctor andthe RNhad me check by blood pressure. It was high. My INR came back as 6.6 so she said the arteries were clamping down on the thin blood. So then I was put on a blood pressure med which causes constipation. FUN. Then on laxative to battle that side effect. Luckily once my INR leveled out I went off of the blood pressure meds.
I had a plane ticket for vacation to Germany exactly 4 weeks after I was admitted to the hospital. Doc said maybe if we can get your blood leveled out I can go. There was not a risk of the clot moving as it had gone through the lungs and hand nowhere else to go. so I waited to see. They let me fly on a 10 hour flight, I was little surprised as that was one of my risk factors.
So now it is January 8. Three and half months out. I have had regular INR test done at the Lab. It has pretty much stabilized on the dose I am on between at the desired 2-3 range. I use the quest APP and it send it to me electronically in 3-4 days. I have mostly been feeling better, but I have started having some returning of the symptoms. I have been reading peoples post and blogs and some support sites to get some advice on what is ‘normal’ and what to expect. The doc doesn’t seem to give me much insight too far into the future on what to expect. So we will just wait it out and see . . .
Following Bryan’s lead on his closing. .
Epilogue
It isn’t lost on me at this point that I’m extremely lucky to be alive. Let’s review the fortuitous events:
Fortuitous event #1: PA ordered a CT scan
Fortuitous event #2: Clot was not a saddle clot
Fortuitous event #3: was able to go on vacation.
Fortuitous event #4: Was able to change jobs and insurance without much of a hiccup.
Non –fortuitous- no more birth control or hormone replacement ever.
In retrospect as advice. You know your body better than anyone, and to be persistent with doctors and medical staff if you are not getting answers or feel like the diagnosis is not correct.
PE is commonly mis-diagnosed as ‘panic attack’ pneumonia, or heart attack. The symptoms of these three are all very similar.
Now I know the symptoms, Symptoms include:
Chest pain-Under the breastbone or on one side, pain in the back or side –also referred to as ‘flank pain’, Most oftenfeels sharp or stabbing, May also be described as a burning, aching, or dull, heavy sensation. Usually is worse when a deep breath is taken.
Sudden coughing, may cough up fluid or blood
Rapid breath, rapid heart rate
Anxiety
Bluish skin discoloration
Clammy skin
Dizziness
Leg pain, redness, or swelling
Lightheadedness or fainting
Low blood pressure
Sweating
Wheezing
Replies