My Story

JOURNAL ENTRY - MY STORYFebruary/March 2014     I had what seemed like a cold with a cough that hung on for a while.  By the end of March, the cough was very significant to the point where I was limiting fluids so they wouldn’t trigger more coughing.April 1, 2014         Went to a new doctor and was diagnosed with double pneumonia through x-ray and blood tests.  Started meds for the pneumonia and the cough and was sent home to be on bed rest.April 2, 2014         Lower left leg developed some soreness. April 3-10, 2014         In the morning, examined my sore left leg.  The left calf was huge in comparison to right calf and was very tender.  Took a Doppler ultrasound test and was diagnosed with a blood clot in the left leg, a little bit above the knee.  The doctor prescribed Coumadin along with three days of Lovenox stomach shots.                During this period I continued deep, body shaking coughs, coughing up fresh blood, the whole time carrying around a pillow to support my ribs and a plastic bucket for the blood.  I was advised that the pneumonia medication would break up the pneumonia and that my coughing would bring it up.  However, dry coughs never brought up anything other than blood and I had constant night sweats.  I told the doctor and nurse practitioner about this many times, and said that I was very anxious to see the pneumonia start breaking up so that I could cough up something other than blood.  Never heard a good response.  April 11, 2014        After x-rays were taken, I was told that I no longer had pneumonia.  I coughed the entire time in the doctor’s office and was told that there was a large amount of gas in my colon pressing on my diaphragm that caused the coughing.  I declined gas relief medication.  Weight loss to date: 12 pounds.April 12-14, 2014        The coughing continued all weekend and on Monday the 14th, I sent an email into the doctor’s office because I started to have severe pains.  I explained that I was going backwards and wanted to know if possibly there was something that had been missed or if we could rethink the situation because I was back where I started and was getting worse.                  The doctor’s office called the evening of the 14th and prescribed something for the cough, along with gas relief medication giving the same explanation as on the 11th about the gas from the colon pushing on the diaphragm.  No real response when told that I was having severe pains.  At that point my wife and I discussed whether or not we should give the medication a try or go straight to emergency.  Neither of us wanted to end up going to emergency in the middle of the night because of lengthy lobby waits and a skeleton, and possibly inexperienced, crew.  We talked about the fact that if we tried the medications and they didn’t work that I would likely have to gut it out until morning.  I made the decision to try the medications to give the doctor one last shot and because I thought it would be ridiculous to have gone to emergency for a case of gas.  I tried the medication.April 15, 2014        I spent the entire night glued to a recliner because I could not come close to lying flat.  I had extreme pain in my entire back and both ribcages in front which felt like I was being stabbed by hundreds of knives.  A heating pad gave me some small measure of help, but I could never fall asleep on my own.  I did pass out twice from the pain for a couple of minutes each time.  In the morning I was blue/gray and could barely move the short distance to the bathroom, using every swear word I knew.                  My wife advised the doctor’s office that we would not be in that morning because we were going to emergency, and was told that I would just see a resident who would give me a pill and send me home.  At the hospital I barely had any time in the waiting room before an EKG was taken and I saw the Senior Resident who told us that her main fear was that the blood clot had broken off and embolized in my lung.  Accordingly, she wanted to do an immediate CAT scan with dye.April 15-20, 2014        Diagnosis was that I never had pneumonia and the blood clot had likely broken off, passed through my heart, and embolized in both of my lungs weeks before (probably causing the symptoms misdiagnosed as pneumonia).  I also had a pulmonary infarction, meaning that some small portion of my left lung essentially died, which will result in scar tissue.  The kicker was that numerous doctors/residents also told me that going to the hospital saved my life and that if I had waited longer I probably would not be around anymore.  I was eventually discharged and got home the afternoon of Easter Sunday with a Coumadin level of 1.9.  Total weight loss: 18 pounds.April 21-23, 2014        I took a follow up blood test at a local lab and the results didn’t get to the doctor until late on Wednesday the 23rd.  My Coumadin level had dropped to 1.3 or so low that the doctor was very concerned and wanted to start me immediately on stomach shots of Lovenox.  I had convinced my wife to attend her training session/seminar in Florida, so it was only me and the girls.  The Pulmonologist found a late night pharmacy stocked with Lovenox while I went to YouTube and learned how to give myself shots in the stomach.April 24-May 4, 2014    Continued Lovenox shots twice a day, showing my daughters how to do it in case I couldn’t.  We had continued problems with the local lab, long waits before tests and almost every visit  they had to call the doctor’s office to argue that they couldn’t do a “standing stat order”.  Coumadin levels from the blood tests were all less than 2, so a decision was made to move to a new testing lab.  The dry cough got worse, so the  Pulmonologist prescribed Tesla and then Prednisone, but neither worked.                Doctor prescribed Vicodin and it made an immediate difference.  The Vicodin dulled the pain enough so that I could cough productively.  For the first time, I coughed up old blood and started clearing out my lungs.  I called it my “happy pill.”  May 5-11, 2014        I took blood tests at the local hospital which went really well.  My Coumadin level was above 3.0, so the Lovenox shots stopped.  For the first time, I woke up without dried blood in one of my nostrils.  Am also back to work almost full time (I leave early if I get tired and don’t stay much past five).  I went to a soccer tournament and then spent the rest of the day shopping.  Probably too much walking.May 12-19, 2014        My Coumadin level crashed to 1.3 on the 12th and built back up by increased dosages to 1.6, 2.22 and 2.91 by the 19th.  The bigger issue was that my left calf, ankle and foot swelled requiring me to elevate my left leg at work.  I iced the leg during the day and at night and then elevated the leg for sleep.  Through research I found that long term, this could be Post Thrombotic Syndrome occurring in approximately in 40% of persons with Deep Vein Thrombosis (DVT).  I stopped using the Vicodin (good stuff but didn’t want to get hooked on it).  Over the weekend it felt like my breath was crackling and like things were moving along my left side where the infarction was.  There was intermittent pain, like a stabbing throughout the weekend, that went away by the 19th.  This was a pleural friction rub.  I found out that pulmonary embolisms can cause pleurisy, which results from inflammation of the lining around the lungs where the pain fibers of the lungs are located.  The pain went away and I never had any shortness of breath or fever, so there was no need for a trip to the doctor. May 20, 2014         One month after discharge!There are so many aspects of dealing with DVT/PE’s that deserve some comment:Hospital - I was very happy with my care, which included the Emergency ICU and then the Medical ICU.  The bills would choke a horse and I am still trying to sift through them along with all of the medical insurance documents, trying to understand which expenses fall under  the deductible and which don’t (it is enough to make your head spin and I am an attorney!).      People always say it is tough to sleep in a hospital because you are taking so many medications and they are running so many tests and that is the truth.  The first couple days I was so drugged up at night that it really didn’t matter because I would fall asleep as soon as they left. I had terrible sweats throughout my stay and was literally drenched all night including my pillows.  I never have heard or found a good explanation for the night sweats.  From the start I took the attitude that I was going to be better and it was going to happen quickly.  That attitude along with my faith helped.  The staff saw that I was really trying and was very willing to cooperate.  I also figured out that the quicker I could get off drugs, the more sleep I would get.  Hospitals are very willing to give you many medications and you don’t realize that a good portion of them are voluntary.  Accordingly, within a few days I was able to strip away most of the medicines so that I could get better and longer sleeps and so there would be less reason to keep me in the hospital.  Good attitude + less meds = earlier discharge.  Constant Pain - Recovering from PE’s is a tricky business.  There hasn’t been a single day that I haven’t had some type of soreness somewhere.  Most of the time there is a feeling of “fullness” across your chest, especially when you expand your lungs as far as they can go.  From time to time, I have had periods where I cannot sneeze or complete a cough because my back muscles feel like they are ripping out of my body.  For the first three weeks after discharge, I dreaded coughing because it hurt so much (even with Vicodin).  First thing in the morning was the worst time and especially after drinking some tea or eating, I would stand at the sink and brace the counter while coughs racked my body until the larger globs of old blood came out.  Coughing took a tremendous toll on me.  Despite the fact that I was eating well, I still lost 18 pounds through this whole process.Emotions - You and your family deal with almost dying and when you leave the hospital you are not even close to healed.  This is an adventure that, for some people, lasts the better part of one to two years.  The hope is that your pains will go away and that you will be mostly healed in five to nine months.  There are so many crazy things that can crop up, and every case is different, so there is no way a doctor can even begin to prepare you for them.  Only through a lot of reading and visiting support group websites can you get a feel for what is going on.  Anxiety results in people making second trips to the hospital, which I was bound and determined not to do.  This is an emotional roller coaster that few people can ever be ready for.  Family and Friends - In my case, talking used up my voice and/or provoked coughing so, other than emails, I was cut off from the outside.  I didn’t try to post anything on Facebook and most people didn’t know that anything was going on and those that did didn’t have a clue what I was going through (of course neither did I for a couple of weeks).  My wife was fantastic, waiting on me and then helping me at every stage through the hospital and beyond. My kids were a great help, always encouraging, loving and my eldest even helped  email and call work periodically.  We put the word out that talking was painful so most people who knew left us in peace.  I did get added to prayer lists at churches/temples which is okay because there was really only one reason why I survived and that faith will never be lost.  Going through this experience made my family closer than it has ever been.Cause of Blood Clot - In my case, I didn’t have any of the criteria that normally result in a clot, i.e. overweight, smoker, drinker, plane flight or long trip, lack of exercise or bad diet.  I was tested for many other different causes and the results came out negative.  One exception was the test for “Protein S”, but that test was essentially ruined because I was already taking Coumadin.  Once I stop taking Coumadin, and it cleans out of my body, they will retest so we can get an accurate reading.Coumadin Level/Diet - I was discharged from the hospital at not an optimal Coumadin level, so I wanted to do everything I could to assist the Pulmonologist.  I stopped taking all vitamins and eating any leafy greens or anything that could contain Vitamin K, which can decrease the Coumadin level.  Just going through my journal, you get an understanding of how volatile my Coumadin experience has been.  When I start to stabilize, I will add in vitamins that have not been found to decrease the Coumadin level.  As I write this, I have just learned that I have taken so many blood tests, that scar tissue is building up making it harder and more painful to take blood tests.  (Like I said, the craziest things come up that could not have been anticipated!).I am scheduled to take Coumadin for six months because they did not find reason why I got a blood clot.  Patients who experience a second PE, however, will find themselves on Coumadin or a similar blood thinner for life.Activities - What you really learn is that everyone is different and you have to learn what your body is and isn’t able to do.  When I first went back to work I put in a couple hours up to half a day and then was able to go to full time the next week.  My first week out of the hospital, I coached a soccer practice, but that required walking slowly, using a whistle, and smiling with happy 8 year old girls.  I still have not run the field with them during a game and tried once at a very unsuccessful jog to chase a ball.  Around the one month mark, I put on a suit for the first time since March and made award presentations at the local high school.  After 5 weeks post-discharge, I have started push ups and sit ups, which are somewhat limited by the pain.  Walking is tricky because it builds my endurance, but if I go too far, my leg, ankle and foot will swell. Cancer - Someone in my basketball group mentioned that there was a heightened incidence of PE’s with prostrate cancer and cancer overall.  Nobody wants to deal with the “C” word and it adds to all of the emotions you go through, but there is no way you can overlook this type of information.  I just took a PSA test (Normal!) and will probably do other tests in the near future to ensure that I am clean.  Also, being age 50, it is time to take a few of those tests. Online Support Groups - I have learned so much and gotten through so many different situations and moments of angst by reading different PE cases that people have posted on support group sites.  There are not words to express how indebted I am to those sites for getting us through so many anxious moments.  I am not close to completely healed, but I hope that my experience so far can similarly help someone else going through the process.