Patient Diary -- David Harner

PH via Multiple Pulmonary Emboli

PH via Multiple Pulmonary Emboli

This diary actually began on November 15, 2003 at about one o'clock in the morning. I had just turned 73 earlier that month. I felt good, although I had been hospitalized with a partial bowel obstruction (a kinked bowel) about a month earlier. I was active as a real estate broker, and the day before this incident I had hiked around a 15 acre parcel of land that I had listed for sale. I had always been physically active all my life and had earned my living since I was thirteen. In recent years I was a flatwater kayak instructor.

At 1 A.M. on that morning, I was awakened by a sharp, severe pain in my lower left side, just under my last rib. After I sat up to find out what was going on, I realized that my left leg, from ankle to groin, was grotesquely swollen and cold to the touch. In a past career, I was a R.N., so I knew immediately what was happening. I woke up my wife, somehow eased my leg into a loose pair of jeans, and we headed for the nearest emergency room, about 25 miles and 35 minutes away. We live six miles from the nearest town and fire station, back in a fairly remote canyon in central Arizona. We could make it more quickly to the hospital than by ambulance.

At the ER, a triage nurse waved me into a side room off the main waiting room. By this time I was having trouble breathing and the pain in my chest was worse. She quickly took my blood pressure and put an oximeter on my finger. When I rolled up my pant leg to show her my leg, she exclaimed, "Oh, my God!" ( I always wonder if nurses are aware what impression is created in the minds of patients when they hear words like those.) I was immediately whisked off to a private emergency room. I had suffered a massive blood clot that extended from my ankle into the iliac vein in my groin. Pieces of the clot were breaking off and traveling up the vena cava to the right atrium of the heart, down to the right ventricle, and were pumped up through the pulmonary arteries into my lungs. I quickly was scanned by Doppler ultrasound to confirm the extent of the clot, and intravenous heparin (blood thinner) was started. An electrocardiogram and a CAT scan soon followed. At that point, six or seven large clots were visualized in the lower left lobe of my lung. The pain was intense. At about five in the morning, I was transferred to a regular hospital room.

One of my closest friends, a retired pulmonary physician, had told me regarding pulmonary embolisms that "they will either end your life or dramatically change it." The death rate from pulmonary embolism (PE) is extremely high--about 70% if treatment is not begun quickly. Death usually results from a large piece of clot that travels to the heart and obstructs the pulmonary arteries. I prepared my wife Carol for such a possibility and thought about my own mortality. I had always joked about dying (black humor, I'm sure), and told friends and relatives that I subscribed to the Woody Allen theory about dying: "I'm not afraid of dying--I just don't want to be around when it happens."  Obviously, I suirvived. [More to come]

November 16, 17, 18:  These days are somewhat blurred. After the initial clots went into my left lung, a nuclear medicine lung scan revealed that the "mother" clot in my leg had sent a "clot shower" into both lungs. I was in intense pain, blurred by doses of intravenous morphine--as much as 10 mg. per hour. By this time, a daughter from Scottsdale, AZ (who is a R.N. at a Phoenix hospice) and a daughter from California appeared in my hospital room, followed that evening by my youngest daughter who is local. (I have 5 daughters and 2 sons ranging in age from 40-54.) I have always handled pain quite well, but during some spasms, it got away from me. I remember being embarrassed that I was making so much noise. When the med nurse asked me what pain level I was on (from 1-10), I always replied, "13!" I had plenty of support. My wife stayed at my side day and night; my retired physician friend came in daily; the daughters stayed until I was safely out of the hospital a few days later. My primary physician and a consulting pulmonary specialist came in at least daily. 

One of my problems in dealing with a pulmonary embolism was that I knew too much. I remembered one time during the mid-60s when I taught English at a high school in Hemet, California and moonlighted at the local hospital. One evening, I was asked to admit an older gentleman (about 65 or so) who had a very swollen leg and was having difficulty breathing. I helped him remove his trousers and shoes, and he sat on the edge of the bed in his shirt and underwear. Suddenly he cried out and fell back on the bed. I called a code, but he died moments later before additional help arrived. An autopsy revealed that he had a huge clot that had traveled up from his leg, went into the right heart, and blocked both pulmonary arteries. I was much more fortunate. As my wife put it, "Dave, you've dodged another bullet." (When I was 26, I had a benign tumor growing on my spinal cord. In 1980, I had three cancerous tumors removed from my colon.)

The first few weeks at home were relatively uneventful. I came home with a common cold (seems as if one always catches something in hospitals these days) that made breathing difficult. During this time, I experienced pain at various locations in my chest--annoying but quite bearable. Doctors assured me that the clots in my lungs were being lysed (dissolved) by my body and that things were going to be just fine. Somehow I knew better. On one website sponsored by a major university medical center, I found a small paragraph under a section on "multiple pulmonary embolisms." In essence, it said that multiple pulmonary embolisms inevitably result in pulmonary hypertension. How prophetic! [More to come]

After I had been appropriately anti-coagulated (with IV heparin and oral Coumadin), I was sent home to recuperate after 6 days in the hospital 

During the next few weeks, I rested. I found that my reading speed, once 3,000 words per minute was now about 300 and my comprehensive was poor. I found it difficult to concentrate and could not read for more than 5-10 minutes at a time. Previously, I could read a book in a couple of hours. Now it took me days. I still found it difficult to breathe and complained to the pulmonary specialist. He said I was just fine and that my O2 saturation was in the mid-nineties so he could not (would not?) prescribe supplemental oxygen. Because I still had chest pain that was unexplained, he ordered a nuclear medicine cardiac stress test and a sleep study. My wife told him I was a noisy sleeper, that I snored, talked, and sometimes stopped breathing and resumed with a loud gasp (sleep apnea). The sleep study was scheduled for 9 P.M., and I arrived on time after a 40 minute drive. No one was there; no one notified me that it had been cancelled. On the drive home, something weird happened. I was almost halfway home when I realized that I hadn't a clue where I was--although the road was one that I had travelled for years. After a minute or two, I tuned back in and everything was fine. It happened again when I was about 7 miles from home. I was shaken. About a week later, it happened again in daylight, right in the middle of the little nearby town. I also noticed a significant short term memory loss. I thought surely I was going crazy or that this was the beginning of Alzheimer's. I had the cardiac stress test. It was stressful. Instead of a walk on a treadmill, I was injected with chemicals that performed the job. When I began the test, the technician asked how I felt. I replied, "Well--O.K., I guess." His reply startled me. "During this test, we are going to make you feel like crap." They did.

At the end of the ninth week following the embolism, my symptoms began to worsen. My breathing was more difficult; I felt dizzy a great deal of the time, extremely fatigued; and my left leg began to swell badly. My foot looked like a huge sausage with tiny pink toes protruding from the end. I went back to the pulmonary specialist who again told me that everything was O.K. and that he could not prescribe O2 because of my high saturation level (96). He did discuss the sleep study. As he described it, my brain was waking up about 130 times an hour even though I wasn't. I had no sleep apnea during the test but I had only 14 minutes of REM sleep in 6 hours. He attributed my fatigue to poor sleep habits. I went home, depressed and angry. [more to come]

Before I write another entry, I want to thank all the people who sent me e-mails after reading my diary entries. Wow! I heard from people all over the country, from Virginia to Iowa to Washington State. Some I will try to answer here. Others deserve a private response, and I will tend to them as soon as I can.

One lady advised me to see a PH specialist instead of a pulmonary specialist and recommended a PH specialist at the University of California San Diego. According to the site map provided by PH Central, there are no PH specialists in Arizona. While there is a Mayo Clinic in Scottsdale, Arizona, their pulmonary specialists are located in their renowned clinic in Rochester, Minnesota. My doctor does not want me to travel. But even more important than his dictates is the issue of travel logistics. I am on constant supplemental oxygen and am taking 40 mg of Lasix twice a day. No way I could travel unless my bathroom and oxygen reservoir could travel with me. I can't afford an RV. Travel by car to Scottsdale from our home up here in the hills in north central Arizona is a two and a half hour jaunt, one way. And that's when traffic is light in the Phoenix area. I thank you for your suggestion, but I will have to wait, I think.

Another lady told me about a family medical problem involving blood clots. My heart went out to her and members of her immediate family. I now know how blood clotting problems can affect an individual--much less a family. I know from reading the literature that blood clotting factors can be transmitted hereditarily. One website that may be of help is the Heartline Online Newsletter. Look under "clots" or "pulmonary embolism." Right now, my blood is so thin from Coumadin that I avoid all sharp objects (particularly razors, as you can tell from my picture). A friend who is also on Coumadin says he misses the joy of being able to pick his nose for fear of starting a nosebleed. (I think he needed a new form of entertainment anyway.)  [More to come]

It has been a while since my last entry. The last couple of weeks have been busy ones. Adult children and grandchildren started showing up to visit and to help with a whole gaggle of jobs that have been accumulating--a toilet repair, some closet bars replaced, a desk moved down from the storage barn, storage shelves to replace a sagging table full of cardboard business files. Buttons were replaced and elastic removed from pajama bottoms by a daughter-in-law who is an excellent organizer and seamstress. What a great family! I love them all dearly!

In my last real entry, I said I was feeling tough--physically and mentally. My breathing, leg swelling, and spasmodic chest pain became so bad that on Friday, my wife stopped at my local family doctor and explained my condition. His office called and he had me come in immediately. After a brief exam, he had the nurse wheel in a tank of oxygen and give me a shot of Lasix. The next order was for a chest X-ray. By the time the X-ray was completed, I was already feeling better on the oxygen. By that evening, the Lasix had done its work and the swelling in my legs had gone down considerably.The doctor sent a office E-tank and cart home with me for the weekend.  An oxygen company rep delivered a concentrator the following Monday. Things began to look up. Some of my mental confusion and memory problems began to clear up. During the following week, I had another appointment after my weekly INR. My family doctor had received (finally) a copy of my echocardiogram. Diagnosis: Secondary PH caused by multiple pulmonary emboli, mitral and tricuspid valve regurgitation, enlarged right heart, and Prinzmetal's angina. By the time I left his office, I had additional prescriptions for Norvasc (reduces blood pressure and modifies Prinzmetal's angina) and nitroglycerine tablets (just in case). He also thought I should take daily walks when possible, and arranged for a liquid O2 reservoir and a portable shoulder unit.

This brings me, more or less, to the present in terms of medical condition. My anger and depression have gone--maybe not completely--but much improved. Last weekend just before some of my family arrived, I even went for a job interview. I am a licensed real estate broker and a company that is a referral brokerage needed someone like me--portable oxygen and all. The arrangements are not completed yet, but the prospects of feeling useful have improved my spirits. Today, because my wife was not feeling well, I took my portable tank and with walking stick in hand climbed a small hill to find a surveyor's corner pin among rocks and juniper trees. More usefulness! I have always worked full time since I was 13 years old. Sixty years of being useful and of being judged by what I did for a living is hard to relinquish. [More to come]

Tethered

When I was a boy back in northeastern Iowa during the late 30s and early 40s, we always kept dairy goats. My job was to take them out to a likely feeding spot and tether them securely to a stake. After they had eaten the grass and weeds to the limit of their tethers, I moved them to new locations. After they had cleaned off a spot, they would strain against the tether, trying to reach some tidbit just out of reach.

I now know how they felt. My 47' tether (oxygen tube) lets me reach everything I need. Our home is so configured that with my recliner chair as the center of my little universe, I can walk to the bathroom, bedroom, kitchen, computer and desk, and a portion of our large deck. Our great room is lined with 15 large 7' windows, plus two sets of windowed double doors. Our views are fantastic. We have no drapes or blinds, and from any room in the house, we look out on 200-300 year old junipers and pinon pines. To the north, about 1,000 ft. away looms Mary's Mesa and to the east, a 100 mile view to Sycamore Canyon near Sedona, Arizona. We live on more than 17 acres of mostly wooded hillside. I feed wild birds on our deck, and everyday visitors during the winter include: scrub and pinon jays, nuthatches, titmice, house and purple finches, three varieties of woodpeckers, canyon and rufous-sided towhees, canyon wrens, white-crowned sparrows, and one year-round robin. So with all this bounty and beauty around me, why am I dissatisfied? It's the damn tether, of course! The very idea of it. I am the first to admit that without it, breathing would be very difficult in just a short time. It's just that I feel rather goat-like. [More to come]

Oxygen Humor?

A few days ago, I drove my car into the supermarket gas station (even the small town we live in has a huge supermarket with its own gas station). I had my portable oxygen tank with me, of course, and I was pumping gas when I was approached by a middle-aged man who was using an adjacent pump. " Say," he demanded, "Why are you driving a car while you're using oxygen?" "Well," I replied, "because it's easier and safer  for me than to do without it." "In my opinion, Mister, he said (in a self-righteous tone), "if you're sick enough to be on oxygen, you should not be out driving on the road."

His remark made me angry at first, but the more I thought about it, the funnier it became. When I think about the number of drivers on the road who are impaired by alcohol and/or illegal drugs, who are drinking hot coffee, using cell phones, putting on makeup, and disciplining kids in the back seat, I would think those of us who are driving while using oxygen ought to be very welcome on the road--all things considered.

March 10 Diary Entry

The past 10 days have been the pits! More breathing problems, more chest pain, more leg swelling—and to add more misery, it’s juniper pollen season.  Why I (and many others in this area) have to be involved in the sex lives of juniper trees is beyond me.  I’ll be so glad when things get back to normal—tree wise, at any rate.  I could also do with an extra shot of energy.  It often seems that ordinary tasks that were once so easy (even a few weeks ago) now seem almost insurmountable.

I’ve known that I needed new glasses for some time now.  I wear something called an “executive trifocal” that have three focal lengths that run clear across the lenses.  They are becoming out-of-fashion.  For me, however, they are an absolute necessity.  Instead of reading typewriter style, I read straight down a page.  The new “progressive” lenses limit my field of vision to a column of type.  They might be OK if all I read was newspapers.  In any case, while standard and bifocal glasses take only a couple of hours to create in a lab, trifocals take a month. I’m sure that they are manufactured in Thailand or some other faraway place.

I learned my lesson a few days ago when I worked on a diary entry.  I completed it and was giving it a visual once over when our phone rang.  Zap! It was all gone.  I will now write the entry in a word processing program and copy it to the diary page.  You can teach old dogs new tricks!

I got my results back from a Tuesday PSA test (prostate specific antigen), and it was lower than last time.  Hooray ! At least something improved in my medical life.  I still have a colonoscopy to look forward to soon.  I had colon cancer in 1980, and it’s been six years since my last test.

I had a great visit today from two friends.  One is a retired pulmonary physician whom I’ve known for 25 years.  The other is a friend who edits our Paddle Club newsletter.  They braved the trip up to the canyon and raised my spirits considerably.  Both are accomplished paddlers--one in canoes, the other in kayaks. I hope that I can get back in a kayak some day. I’ve already figured out how to secure a portable O2 tank in the cockpit. My days of running modest rapids are gone, however.  [More to come]

Quarentine

I mentioned in my last entry that I had a visit from two friends and how enjoyable that couple of hours was.  Has anyone else noticed that since you were diagnosed with PH that the number of those friends who visit has dropped off considerably?

Reminds me of a time in 1936.  We lived in Colorado Springs , Colorado where my father served a very modest city congregation.  I was six years old, and it was mid-December.  I contracted scarlet fever and remember very clearly the measures taken after a doctor made his diagnosis.  All of my combustible toys were immediately burned in the wood stove.  I was confined to my bedroom, and the window shades were pulled down to avoid damage to my eyes.  I was not allowed to read.  My father showed me the big red “Quarantine: Scarlet Fever-Contagious” sign that was nailed on our front door by the Public Health people to warn people away.  I felt isolated and alone.  I have found that people, even when a medical condition doesn’t have any danger of contagion, avoid people they believe to be sick.

Thursday, March 25 2004

Dr. Stephen Maturin (a fictional Royal Navy surgeon in the Napoleanic war years) speaking to Commodore Jack Aubrey in Patrick O’Brian’s book, The Commodore:

Sickness has innumerable squalors…and in some ways the nastiest, is the sufferer’s total selfishness.  Admittedly, a body doing all it can to survive will naturally turn in upon itself; but the mind inhabiting that body is so inclined to feast on the indulgence, carrying on and on long after the necessity is gone…

Boy, do I resemble that remark! It’s been especially true during the last three weeks when I’ve been feeling so lousy. It’s so easy to let others do for you, until you realize you don’t really need all that help and should be helping yourself more.

My left leg and foot (the one in which the “mother clot” occurred) has remained grossly swollen in spite of elevation, increased doses of Lasix, and compression hose.  After a long awaited visit to a cardiologist on Monday, I had an ultrasound yesterday.  I haven’t received the doctor’s report yet, but I listened carefully to the technician as he dictated a running commentary as he ran his probe up and down my leg. My conclusion? The veins in my upper leg are still blocked by clot.  The smaller veins in my lower leg are beginning to allow blood flow as the clot dissolves, but the valves in the veins that keep the venous blood moving toward the heart are badly damaged. This allows blood to reflux or flow backwards, thus the tissues retain fluid.  The whole process makes the heart work harder.  Oh well.

Next week, I am to have both sides of my heart catheterized (a thin tube is inserted into an artery in the groin and moved up into the heart.  Once the catheter is in place, a dye that is visible by X-ray is injected and X-ray motion pictures are taken to visualize the blood as it passes through the heart.  This shows the left heart and coronary arteries in great detail.  Then another catheter is inserted in a vein and the right heart and pulmonary arteries are examined.) Tomorrow, I go to the cardiologist’s for a pre-cath class. I’m all in favor of patient education.It’s an invasive procedure not without risk.

The weather has been great—in the low 70s—and spring has arrived in the central mountains of Arizona .  The winter birds are beginning to migrate, and I am looking forward to seeing old bird friends arrive.  I particularly enjoy the grosbeaks, the Rocky Mountain canaries, and the Scott’s orioles.

I feel pretty good today for a change.  I didn’t use oxygen all night. [More to come]

Medical tests and preps are always stressful and tiring for me.  This past week’s tests included two visits to a clinical laboratory; an ultrasound on my funny, swollen leg; and a pre-catheterization class.  Next Tuesday is the “biggie”—a left and right heart catheterization. .In my days as Director of Education at St. Luke’s Medical Center in Phoenix, one of my jobs was to prepare facilities and materials for a weekly Cardiac Conference during which physicians presented case studies (and sometimes live patients)—sort of a medical “show and tell.”  One of the features of these presentations was 35mm X-ray motion pictures of the heart’s coronary arteries, chambers, and valves visualized by dye injected into the heart through a thin tube or catheter.  Over the years, I probably saw more than 500 of these catheterization studies.  I had no idea that some day my heart studies might be the subject of such a conference. Time does bring about interesting ironies.

  Signs of the times:  My daughter and I were watching a NCAA tournament basketball game on the tube. Suddenly, on one of those distracting moving banners at the bottom of the screen, we saw the following news teaser: “Bizarre sex crimes…after the game.”  (I think we changed channels.) [More to come]

Spring concert

Springtime in this part of Arizona is marked by the cries of male Gambel’s quail.  These beautiful birds, decked out in full plumage, perch high in the branches (sometimes on the very highest bough) and call every few seconds to attract a harem.  When several males are competing, it can become rather noisy.  In some cases, since our deck is at treetop level, we get the full benefit of this spring concert. 

I have received e-mails from all over the country. Thank you, everyone!

Tomorrow is heart catheterization day, and on Thursday, my eldest son, John, arrives from the Big Island of Hawaii.  He and his lady will stay a few days.  He is a lot of fun, charming, and full of mischief. John is a drywall, masonry, steel framing contractor who has been in business over there about 15 years. He will brighten things up around here—guaranteed.

Last entry?

I seems like months since I have contributed to the diary.  Much has happened during this time, at least medically speaking.  My shortness of breath and chest pain has increased over the weeks..  My family doctor agreed that something needed to be done.  He sent me to a Prescott cardiologist of fine repute to have a ultrasound of my left leg (at that time it remained grossly swollen no matter how much I kept it elevated, medicated, etc., etc). The ultrasound was followed by a L/R heart catheterization.   

The upshot of the ultrasound was that the upper part of my leg was not compressible; I still have considerable residual clot.  The lower leg is beginning to “open up” and good pulses could be detected.  Still, damage to the venous valves of the lower leg let blood flow backward to the foot and ankle instead of toward the heart where it could be oxygenated in the lungs.  

The heart catheterization brought wonderful results.  So wonderful, in fact, that it probably ended my membership in this very elite group of exceptional PH people.  My coronary arteries are clear—a 19 year old would envy them.  The leaky valves have closed and are functioning normally.  And--my pulmonary arterial pressure is normal.  I no longer have pulmonary hypertension!

O.K., so why am I still SOB and having severe chest pain? My inspired family doctor next sent me for a upper GI exam. Bingo!  Two years ago, a Mayo allergist told me I had a hiatal hernia.  My reaction then was, “So what!”  Most people over 50 have them to some degree.  But now, this had become serious.  I have something called “an incarcerated hiatal hernia” with 30-50% of my stomach trapped in my chest cavity.  Obviously, it reduces lung capacity dramatically.  It also causes the stomach to rub against the esophagus, causing the esophagus to spasm and to mimic anginal pain.  I have made an appointment for next week with a lady surgeon at Mayo Clinic in Scottsdale , AZ.  She is one of two general surgeons there who specialize in hiatal hernia repair. We shall see whether or not I am a good surgical candidate.

My local doctor also did something nice for me.  He administered a kennalog shot and a 4-day prednisilone regimen. I now have no allergy symptoms and am able to start CPAP treatments.

Medical stuff aside, springtime in the central mountains of Arizona has officially arrived. 

We are fortunate to live in an incredibly mild, year around climate.  It is usually sunny, but 20 degrees cooler than Phoenix and the surrounding desert.  Small yellow wildflowers are popping up all over our property.  Small herds of javelina are paying us weekly visits, and summer birds are gradually beginning to show up at the feeders.  This morning, more than 200-300 pinon jays showed up to devour all the seed in a large feeder.  About 2 lbs. of seed disappeared in 6-7 minutes.  Yesterday, from my window, I watched a red fox across the canyon rear high in the air to pounce on some small critter—probably a deer mouse.  [More to come?]

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