The Rest of the Story

The next day I met a new doctor (Dr Marquardt) who assured me we would find out what was wrong.  He would do a couple of tests and then we would do an angiogram and all of this would happen within a couple of hours. His confidence and reassurance gave me hope that a solution could be found. The nurses told me what was happening and what to expect every step of the way. This was very helpful and lessened my anxiety about being in a hospital.

The angiogram seemed to surprise the medical staff.  They were pretty sure I had a blockage in my heart that was causing it to enlarge and to act unpredictably. The angiogram showed no blockage whatsoever. This was a relief on one level, but further puzzling on another. Dr Marquardt was not daunted, but even more determined to find the cause of the symptoms.  “If it’s not your heart, then it must be your lungs.” he said, so he ordered a perfusion lung scan in order to get a good look at my lungs. According to the patient handbook –

a perfusion lung scan is the best screening study looking for obstructive pulmonary vascular disease … the most frequent cause being pulmonary emboli, acute or chronic.

By that afternoon he had found several blood clots in my lungs, five of which were quite large. He presumed they had traveled to my lungs from my leg – deep vein thrombosis. To make sure, he sent me off to have my legs x-rayed. Sure enough, they had. My right leg was blocked significantly. Some of the clots had migrated to my lungs from there. Within seconds I was put on anticoagulants to thin my blood to allow it to flow more easily. The thinners would also keep blood from sticking to the clots and enlarging them even further. In the meantime, my diagnosis, finally, was obstructive pulmonary vascular disease, or more specifically, CTEPH — chronic thromboembolic pulmonary hypertension.  But what the heck is that? I’d never heard of it before. I looked it up once I got home and found this definition:

The blood vessels in your lungs, called pulmonary arteries, have their own pressures, similar but separate from your regular blood pressure. If this pressure is high it causes pulmonary hypertension (PH). PH makes the right side of your heart work harder. Over time, the right side of your heart becomes enlarged, making it harder to pump blood. CTEPH, or chronic thromboembolic pulmonary hypertension, is a rare form of PH. In CTEPH, a thrombus (clot-like mass) gets stuck to the lung’s blood vessel wall and blocks blood flow.

A diagnosis is just the first step in fixing the problem. This sounds self-evident but by now I was far enough along on this journey to know that to some treatment professionals the diagnosis was not just the beginning but also the ending.  Once diagnosed it was, “Ok, that’s what wrong with you. Here are some pills. Good luck”. The patient handbook explains the importance of pursuing treatment:

Pulmonary hypertension, as a result of chronic thromboembolic disease (CTEPH), is potentially curable with pulmonary endarterectomy surgery. Consequently, correctly diagnosing patients with this type of pulmonary hypertension and evaluating these patients with the goal of establishing their candidacy for surgical intervention is of utmost importance. Since advanced NYHA functional class status is associated with increased mortality, early recognition is essential and referral to a specialized center familiar with the evaluation and management of chronic thromboembolic pulmonary hypertension is strongly encouraged.

I was released a day or two later. Upon my release, Dr. Marquardt told me about the UCSD hospital in San Diego that specialized in removing the clots, thrombo-endarterectomy.  He told me how to look them up on the internet. Well, if you want to get grossed out, you can look this up for yourself. The videos are scary and messy.  You’ll see doctors pulling out big red gooey blood clots from people’s lungs. Yikes!  My first reactions were, “No thanks. I’ll get by without going through this. I will probably die a lot sooner but I’ll be spared from this gory experience.” After a few days passed I’d go back and look at the videos again.  Each time I got closer to thinking, “I want these things out of me. They are hurting me”. I had flashbacks of scenes from the first Aliens movie where these awful creatures had invaded the body of Sigorney Weaver. OK. I’m in.  Let’s get these things out of me. I naively thought it would be easy to move ahead with this decision, but of course it wasn’t.

I gave Dr. Marquardt the green light to send a referral to UCSD medical center where they specialized in thrombo-endarterectomy. I can’t pronounce this procedure, and I don’t know what some of the words mean in the definition below.  I share it so you can try to figure it out for yourself.

A Pulmonary Thrombo-endarterectomy is a cardiothoracic surgical procedure, which removes organized thrombus from the pulmonary arteries using the techniques of median sternotomy, cardiopulmonary bypass, hypothermic arrest, cardioplegia, and special dissection techniques. The chronic thrombi are incorporated into the arterial wall, thus requiring meticulous dissection in a bloodless field.

Once Dr Marquardt completed the referral to UCSD I waited anxiously to hear from them. Weeks went by. I called and waded through their phone tree a few times and was assured that they had my records and would get back to me as soon as they could evaluate my case.  When I still didn’t hear anything from them, I called more. I made sure ALL my medical records had been forwarded to them. Again, I was assured my case would be evaluated and I would be informed as to whether or not I would be accepted. Several weeks past. I assumed they had not accepted me so I asked my General Practitioner to refer me to Stanford.  Stanford accepted me within a couple of weeks and over the next three months we began the long drives to Stanford for tests and consultations with doctors.

Throughout this process of chasing down medical records and begging various medical records clerks to forward my records, I learned the sad state of what I will loosely refer to as “no interoperability.” By this I mean that hospital electronic records often do not “talk” to each other. Getting one’s records transferred to other providers is not a slam dunk. It takes vigilance and patience. Finally, I got a complete set of all my medical records and carried them with me to every appointment.  If a Dr. said he didn’t have my records, I’d whip out my copy and ask them to make a copy for themselves right there on the spot.

In the meantime, while driving back and forth to Stanford, I was also referred to a cardiologist and a pulmonologist in the UCD system where my General Practitioner was practicing. The cardiologist did another EKG and thumbed through my medical record. He couldn’t find some of the key elements in my chart, so I had to show him where things were. He final told me that I might as well accept this diagnosis. He said I could go to different doctors but they would all tell me the same thing. I would need to be on blood thinners the rest of my life. I was not resistant to the blood thinner suggestion, but I was holding on to the hope that the clots could be removed. This alternative seemed to be outside of his scope of practice and knowledge base as far as I could tell. He clearly had not read the patient handbook which states:

Pulmonary hypertension as a result of chronic thromboembolic disease (CTEPH) is potentially curable with pulmonary endarterectomy surgery. Consequently, correctly diagnosing patients with this type of pulmonary hypertension and evaluating these patients with the goal of establishing their candidacy for surgical intervention is of utmost importance.

The pulmonologist ordered a couple more tests and after reviewing them he told me nothing about my condition had changed. The clots were all still there. He said to come back in four months. Four months? Are you kidding me?  I want to get well – not just sit around for four months. Since I was going to Stanford he may have thought I was taken care of.  Not sure.

By February the doctors at Stanford agreed that the blood thinners had done as much as they could do.  The clots had been there for a while and had attached themselves to the inner walls of my vessels. They were not going to shrink or be minimized in any way by the blood thinners. As you will read in the clip below from the patient handbook, my clots were now assumed to be permanent.

What is also known is that the appearance of lung perfusion scans change little beyond 8- 12 weeks even while on antithrombotic therapy, and as a result, the obstructions can be assumed to be permanent beyond that time.

The next step was to refer me to UCSD since I seemed to be a good candidate for surgery to have the clots removed. Within a week of this advice, and before Stanford could complete their refer, UCSD came across the referral that had been made by Dr. Marquardt the previous September. They do not know what happened to my referral since it never takes this long to evaluate a patient for candidacy. For some reasons, and we’ll talk more about this in the section on spirituality, my initial referral had been delayed by five months.

It was mid-February.  I was napping with my dog – taking our early afternoon nap on the couch which now seemed to be a prerequisite for getting through a day. The phone rang and a cheery, non-apologetic voice from the UCSD pulmonary clinic told me that I had been accepted into the Pulmonary hypertension chronic thromboembolic disease (CTEPH) program. Furthermore, in a few days or a couple of weeks, someone would call me and give me a date for the surgery. OMG. The dog and I both leapt from the couch and then stood there looking at each other. Our lives were about to change. It took several days before the call came with the surgery date of April 24th, six weeks from the day of the call.

I went back on YouTube and watched several examples of clots being removed from lungs again. They were gruesome and frightening. Once I got over the petrification, I decided I wanted these things removed from my lungs, even though it was going to hurt and scare me and be a long recovery. I was going to go ahead with the surgery if I received the final approval from the medical team at the hospital.

The surgery was scheduled for April 24th, with the preceding week being filled with several tests that would let us know exactly what was going on in my lungs and heart. This meant I had two more months of waiting for something scary, painful, and life-threatening.  I’m not good at waiting for anything. I can barely wait for the guy in front of me in the grocery store to pay for his stuff and move on.  I’m even worse at the post office when the guy in front of me is telling his life story to the post man. Two more months of waiting was really going to test me on many levels.  More about this is the section on spirituality.

While I wanted the clots out, I wasn’t sure I wanted to go through the process of having them removed. I was still sort of on the fence.  What pushed me over the edge was a dinner date my husband and I had with our friends, Ken and Chris (both doctors).  I called Ken to tell him we were going to our hotel room and would meet him and Chris in the lobby. He kept me on the phone for longer than necessary but I didn’t think much of it. We were halfway through dinner when Ken asked me about my intentions regarding the surgery. I perseverated. He and Chris looked hard at me and he said, “Lori, when I was on the phone with you, you could hardly breath. You need to go through with this.”  Ken had read all my medical reports and all the info from the hospital. He is often quick to find fault with things that aren’t right. So when he said the UCSD folks know what they are doing and had their act together, I made the final decision to go ahead with the surgery.

The week before surgery finally arrived. This week was set side to do several tests to determine my fitness for surgery. Here’s how the handbook describes the events of this week.

You will have several tests to help us in our PTE evaluation. Some of the tests are routine and are ordered on every patient who is admitted to the hospital. These include a urinalysis, a chest x-ray, an electrocardiogram (EKG), and various blood studies.  The tests listed below are part of your evaluation.

 VENTELATION TEST. This portion of the lung scan allows us to see where the air exists in your lungs and the perfusion portion allows us to see where the blood flow exists and if pulmonary emboli are present. To perform the test, you will then be asked to inhale a small amount of radioactive gas. A special camera called a Gamma camera will take pictures of your lungs to examine the distribution of airflow. Then a small amount of radioactive solution will be injected into a vein 1n your arm. The Gamma camera will take pictures to examine the distribution of blood flow in your lungs.

 ECHOCARDIOGRAM (ECHO). This test will measure heart size, detect communications between upper chambers of your heart and show the speed and direction of blood moving in your heart and in your pulmonary artery by using sound waves.

 RIGHT HEART CATHERETIZATION PULMONARY ANGIOGRAPHY.  You will see a lot of equipment and personnel in the catheterization room. They are needed because the procedures are complex. Cardiac catheterization will evaluate the performance of your heart. One or more narrow plastic tube (catheter) will be introduced into your heart through a vein in your neck. The catheter will be guided through the network of veins with the help of x-ray (fluoroscopy)until it reaches your heart. It will enter the right atrium, then the right ventricle, and then the pulmonary artery. Pressure recordings will be made and blood samples will be withdrawn for analysis in each area of the heart. An angiogram will also be performed. During this procedure, an iodine-containing dye will be injected into the pulmonary artery and pictures of the blood vessels will be taken in rapid succession.

 lVC FILTER PLACEMENT. This filter is placed into the inferior vena cava (the main vein that returns blood from your legs). This device will potentially prevent any clots in the leg veins from reaching the lungs. You will be given a mild sedative and asked to lie on a fluoroscopy table. The filter will be inserted through a vein in your groin or your neck by a physician.

 This is the only test where we hit a snag.  I was prepped and the filter was ready to insert when the technician found that I had not one but two vena cava. This complicated things since they didn’t know where to put the ilter.  So, we left it out.

 COMPUTERIZED TOMOGRAPHY OF THE CHEST (CT CHEST SCAN). CT scanning provides a three-dimensional image of the chest. Such an image is far more capable of revealing information about the mediastinum (the tissue between the lungs which contains the heart and pulmonary arteries) and the lung tissue itself.  Prior to the test, a small amount of contrast dye will be injected into a vein in your arm.

 CAROTID DOPPLER. A carotid Doppler examination is a method of non-invasively evaluating blood flow through the carotid arteries, the major arteries which supply blood to the brain and which are located on both sides of the neck.

 It was during this week that I learned more about my situation than I had in the past seven months. Each time a test was administered the doctors would explain everything to me. I saw x-rays of my lungs and clots for the first time. I understood what strain my heart was under as it tried to pump blood into my lungs.

By the time the surgery date arrived, I was confident that this was the best choice for me and I had confidence in the medical team. The surgeon, Dr Pretorius, and his team came into my room the night before surgery and went over everything with me again. They explained that no one had died from this surgery. I found this was very reassuring. They told me that this process was not going to be easy, but it would be worth it. They asked me if I understood what they were going to do during the surgery. “I think so. Let’s see, I think you are going to knock me out for at least 30 hours, lower my body temperature to 60 degrees, hook me us to a heart-lung machine which will keep my blood circulating and oxygen flowing. Then you will cut open my breastbone, pull the skin and bones back so you can access my lungs and heart. Then you will stop my heart and cut into my lungs where the clots are.  Once you find them you will try to cut them away from the blood vessel lining where they have permanently attached themselves.  You will do all of this within 30 minutes on each lung because if you go longer I could suffer brain damage. You will then sew everything back up. Do I have this right?”  Yes, that was about the size of it. Do you want to go through with this?  Yes.

They mentioned one more thing before leaving that night.  Many patients who undergo a significant surgical procedure such as this will awaken with temporary psychosis.  It will pass. This was at least a scary for me as the surgery itself.  Having spent my entire career with folks who were seriously mentally ill and understanding their pain and some of my own, I wasn’t interested in having this experience. I wanted to wake right up and begin making sure all was well. I wanted to be in my right mind.  So this was the last thing I had to give up to accept my healing. OK, let’s do this.

I remember being wheeled into the operating room the next morning and being met by a team of good natured professionals. They were happy and clearly liked working with each other. I felt like I was in good hands. Then it was “lights out” and what ever happened during the next 30 hours is not in my conscious memory and I am grateful for that. However, the patient handbook clearly spells out what went on during those 30 hours.  Here’s a more medically accurate description of the surgery:

 PTE (pulmonary thrombo-endarterectomy) surgery is the removal of old blood clots (now scar tissue) that are plugging up pulmonary arteries. lt falls into the general category of “open heart” surgery, although the surgery is not done on your heart. It is a complicated procedure because the clots in your arteries are stuck to the artery wall, thereby narrowing the center of the blood vessel. To remove the clots, the surgeon must open these arteries while no blood is flowing through them. In fact, your blood will go through the heart-lung machine (bypass pump so named because it bypasses your heart and lungs) during the surgery. The heart-lung machine will oxygenate the blood and pump it through your body. The surgeon will enter your chest through an incision made in the sternum (breast bone). You will also be made very cold during the surgery. When your body is cold, your oxygen requirements are reduced. General anesthesia is required for PTE surgery.  After you are asleep, the doctor will place an endotracheal tube (small plastic tube) through your mouth and into your trachea. This will be connected to a ventilator that will breathe for you while you are in a deep sleep. An infusion and monitoring catheter in your neck, a blood pressure monitoring line in your groin, and a catheter to drain urine will also be put into place.

Thirty hours later I had a glimmer of consciousness. I remember my husband holding my hand. At first, I thought it might be God holding my hand but then I recognized my husband’s fingers and rings. I couldn’t react or acknowledge anything. I just knew he was there.  A little later the surgeon came in and ask me to wiggle my hands. I had no way of responding. I didn’t even know where my hands were.  Then he said to wiggle my feet, and for some reason I did that very well.

A few hours later I regained consciousness in the intensive care unit. I had tubes coming from several places that monitored my body functions.

After the operation, you will be brought directly to the ICU. We will keep you asleep until the next morning. When you wake up, the endotracheal tube will still be in place to help yobreathe. You will not be able to talk because the tube passes through your vocal cords.  The ventilator will be breathing for you. You will have a small tube that goes into your stomach to empty the secretions in your stomach so you don t become nauseated. You will have several monitoring lines in place. The one in your wrist will be an arterial line. We will monitor your blood pressure with this and take blood samples to determine your oxygen level. Another monitoring line called a Swan-Ganz catheter will enter the chambers of your heart through a large vein in your neck. Through this we can measure the pressure in your pulmonary artery and the amount of blood being pumped through the heart (cardiac output). The Swan-Ganz catheter will also help us monitor fluids and pressures to maintain a stable fluid balance.

 The incision in your sternum is closed by wiring the sternum together. The wires stay there permanently. Under the skin, there are sutures, which dissolve. And on the outside there are no sutures; there is a protective bioglue” that is applied that simply peels off as your incision heals. After your surgery, when they close the sternum (breast bone), there is air and fluid that remainin the chest. Two to three tubes will need to be left in your chest to drain out the remainder of this air and fluid. They are called chest tubes and may be removed several days after your surgery.

You will also have temporary pacemaker wires coming from the top part of your incision. They are connected to a temporary pacemaker outside of your heart and are used after the surgery to regulate your heartbeat. You will have a Foley catheter (a small tube to drain urine from your bladder) so you wont have to use a bedpan or urinal.

 Remember, all these tubes and the equipment you ll see around you are temporary. Your main job in the ICU is to rest and allow us to care for you. The more relaxed you can be the better.

I couldn’t talk at first, just whisper. Food arrived and I was going to eat but I couldn’t get my hands and arms to work in a coordinated effort to get the spoon to move. So, my husband fed me a few easy to eat things.  My sister and my husband took turns feeding me. My brother was there too and he told me stories. His girlfriend was there too and she brought me magazines and games.  A couple of times we all walked around outside and then convened in the snack bar for treats, just like well people. I knew they were all looking out for me and helping me with judgment calls, since my judgement was not reliable. They also had an uncanny way of knowing when to let me take risks and keep moving out of the patient role.  It helped a lot to have them there – to remind me who I was and that I was still me.

People had told me that the worst part of this procedure would be the pain. Yes, I had pain, but I also had some pretty good pain pills so I could control most of the pain.  Coughing really hurt but everyone cheered when I coughed since it was good to cough up gunk that was trying to get out of my lungs. While the pain was challenging at times, the hardest part for me was the utter vulnerability, dependency and helplessness. This was very uncomfortable for me and motivated me to begin taking my life back. Over the next 6 or 7 days I took a little bit more of myself back as I was able to do so. I could walk around the floor, supervised at first and then on my own. Three days after the surgery, I was finally able to take a shower and wear my own pajamas. I could feed my self and order what I wanted to eat. All these things helped me regain a since of myself and helped me remember my strength and fortitude.

The staff and medical team were magnificent.  They listened. They let me have my way as much as possible.  They got me up and helped me walk. My family and friends came and walked with me. This walking was the part that helped me the most in terms of recovering myself from a state of dependency.

I was released from the hospital 8 days after surgery (at least six days before the shortest anticipated length of time). I have been home now for four weeks. I get a little better all the time.  Some days I overdo it and pay for it the next couple of days with long naps and aches and pains. So, I am trying to find a balance between doing my best to be well and also respecting my body’s need for rest and recuperation. I miss the people at the hospital. I feel like we went through an intense and intimate time together and then I left and am isolated from anyone who even knows what happened (with the exception of my four family members). I have asked to be referred to a pulmonary rehab program so I can be with others who have similar situations.

I’m back with my original pulmonologist and he has set up tests to see how things are progressing. Today I had a “sniff test x-ray”. The test showed that my left lung still has “profound paralysis.” During the surgery my left phrenic nerve was damaged. This is the nerve that connects my brain to my diaphragm and is how my brain tells my diaphragm to breath. In 50% of people, this nerve regenerates and restores itself to full functioning.  I am hoping there is a way to help heal this nerve so my diaphragm is back to normal. The pulmonologist says we will wait a year to see if this happens. He still gives me appointments four months out, but in the meantime, he sets up tests, so I think it’s all working out.

Each day I walk my dog as long as I can before getting tired. The times vary from day to day. I meditate and continue my prayer times. I am also driving short distances now, which is really a relief and release.  I’m impatient about getting my energy back. I want to be well now, but I know that’s not entirely realistic. The patient handbook gives me some ideas on what to expect:

In the vast majority of patients, within several weeks to two months post-operatively, there is a dramatic improvement in their exertional dyspnea, and often abatement of 02 supplemental needs. As a rule, symptoms such as hemoptysis, exertional chest discomfort, lightheadedness, and fluid retention resolve. For most patients, the surgery is a “cure”, and they are able to return to work and recreational activities. Provided the patient adheres to chronic anticoagulation therapy, we have rarely seen a recurrence of embolic hypertension during long-term follow-up.

I am now two months past the surgery and all of the above conditions have abated, with the exception of shortness of breath.  While my breathing is much better and continues to improve daily, I am still short of breath upon exertion.  I am much better than I was prior to surgery, but not back to my normal breathing.  I think this will continue to improve over time.  I may have to wait for my diaphragm to catch up with the healing that has happened throughout my body.  I can wait.  This was a big thing to happen to my 73-year-old body, so I know I need to cut it some slack.

I am still on oxygen. It helps me feel much better.  It is a complete pain in the butt – dragging it around, tripping over cords and tubes, having others trip over the tubes and cords, dog becoming entangled in it and having my face jerked off when I walk beyond the range of the cords. Ouch.

Approximately 70% of patients require supplemental oxygen either continuously or with exertion and sleep after leaving the hospital. Supplemental oxygen is usually required for 6-8 weeks because the pulmonary circulation needs time to re-establish itself.

I am still in the process of finding the right level of blood thinners, anticoagulant, as they call them. I go to the lab each week to have my blood tested and doses adjusted.  This will become less frequent once I stabilize.

Final instructions are:

You should continue to take a walk on level ground 3-4 times daily at home using your oxygen (if it is prescribed). It is recommended that you take an anticoagulant for the rest of your life. If you are taking warfarin, your Prothrombin time/ INR needs to be checked regularly in order to prevent new blood clots from forming. Until the incision in your breast bone (sternum) heals, you should not lift anything that weighs over 5-l 0 pounds. We also recommend that you do not drive a car for at least one month. The sternum usually takes two full months to heal completely.

I have complied with all of these instructions except for the driving. I started driving at the end of the second week.  I just couldn’t stand to comply with that one since I had done so well with everything else.

Finally, I am so grateful for the wonderful expertise of the doctors and staff at UCSD.  They are an amazing group of people doing ground breaking work. I am so glad I had the opportunity to use their services.

Loosing It

By the next morning, I had still not been treated for anything – just poked and rolled and looked at quizzically. Finally, in the late morning a doctor came in to talk to me. He said I had some irregularities in my heart but he didn’t know why. He thought I may need an angiogram but they didn’t do angiograms in this hospital. I would need to be transferred to another hospital and he wasn’t sure he could get them to accept me.  When I started asking questions he became defensive and seemed to try to bully me into being a good patient and he left as soon as he could. He was the doctor and he was supposed to know everything, but he didn’t. So all he could do was talk authoritatively to me and leave.  My hopes for a quick treatment and release were beginning to wane.

My next attendant was a young nurse who drifted lazily into the room in a Monday morning daze. She checked the knobs on one of the machines I was hooked up to and then casually asked me, “What are you doing here?”  If I were in my best frame of mind, I would not quite know how to answer that question. I have no idea what my response was. Whatever it was, it seemed to pique her curiosity and she proceeded to ask several more annoying questions. I finally had the presence of mind to ask her if she had read my chart. She said she hadn’t.   By this time I had repeated my story several times to a couple shifts of staff in the emergency room and now a couple of shifts of hospital staff. I was in no mood to do it again. I told her to go read my chart and if she had any questions to come back.  This was the beginning of me “loosing it.”

I don’t remember what the final straw was, but I think it was someone else coming to take more blood. They could not tell me why they needed more blood or what they were going to do with it. They were just going through the motions. My frustration tolerance threshold was finally breached. I felt like I was in the hands of people who were on auto pilot. They weren’t getting any closer to figuring out what was wrong with me. I felt like I was at the mercy of a system that didn’t have a brain.

I’ve had years of learning how to not cry when I’m in a pinch. Keep your head girl. Don’t let them see you cry. Stay calm.  Figure out a solution and put in into action as soon as you can and get yourself out of this mess.  By now I was so frustrated that I didn’t have enough control to stay calm. I started crying. I called my husband on my cell phone and asked him to come and get me. I wanted out of there. I was crying and yelling that I wanted out! These people were not helping me. They were only hurting me more each time they came into my room and they were not getting any closer to  finding out what was wrong.   This display of erratic emotions on my part seemed to get the attention of the doctor and he began working on getting me transferred to another hospital.  I had a lingering fear that they would transfer me to the psych ward.

My husband came rushing to the hospital wondering what on earth was going on. The Doctor and nurses intercepted him outside my room. They explained that they weren’t going in my room until he got there because I was so upset.  My husband said he could help so they all came in together. The doctor apologized for not being more helpful. He explained he had only been on this job for two weeks and was still learning the ropes. We made peace. He said he thought he had been successful in arranging a transfer to another hospital where I could get an angiogram and he would know within a couple of hours if it was going to go through.

Several hours later, quite late at night, the transfer was accepted.  Four ambulance drivers came into my room.  They were the high point of the day. They were respectful and light hearted. They were real. They got me on a gurney and into their ambulance and off we went on the hour’s drive to the other hospital. They told me stories about their kids and their job.  They asked my advice on how to stay married. I gave them whatever advice I had that seemed to work. By the time we arrived at the hospital we were good friends. We wandered around the halls for a while to find my room. It was actually fun being with them and for a while I forgot about how frightened I was.

(more later)

Frightened but Hopeful

Alongside of this experience, I was questioning my Doctor about the shortness of breath and asked him to help me figure out what was wrong.  He began with the least invasive approaches –chest x-ray, EKG, and moved on up to stress tests and breathing tests. This all took place over a period of a couple of months.  None of these tests showed much evidence of a problem. There was some indication that my heart was not “normal” but it was still within range of reasonableness.

Without a scary diagnosis in sight, I decided to spend a couple of weeks in Brazil during the month of July. The flight was uneventful and my breathing didn’t get any worse, maybe even a little better.  As long as I didn’t exert myself, my breathing seemed normal, but the minute I walked fast or bent over a couple of times, I was gulping for air. The patient handbook explains this:

Most patients experience a honeymoon period” after the onset of dyspnea. They may be stable or even improve for a period of several months or years. Then deterioration occurs, sometimes rather abruptly. This is usually interpreted as an embolic recurrence. However, it usually represents onset of right ventricular failure from chronic pulmonary hypertension.

There were more tests in August and more Doctor visits. I was starting to think that my doctors were seeing me as mentally unable to relate to my situation. Since they couldn’t find anything terribly wrong with me, they seemed to think nothing WAS wrong.  With a rather dismissive attitude, they usually sent me on to another specialist for an appointment that was several weeks out.  No rush. But I knew something was wrong.  I couldn’t breathe. Another note from the patient handbook explains the difficulties of diagnosing this condition:

The diagnosis may be difficult to make. Frequently, the presenting and often dominant symptom is dyspnea on exertion. As a result, alternative diagnoses are entertained including pulmonary arterial hypertension (P AH), coronary artery disease, exercise-induced asthma, etc. While most patients have a history of venous thrombosis, it may be obscure (“leg cramps”, pulled muscle, etc.). A discreet, documented episode of embolism also is frequently absent. The cause for dyspnea thus often remains undefined (until a lung scan is done).

By September my breathing became so laborious that I could not walk between my bedroom and the kitchen without stopping to rest and breath. I didn’t know what to do. I was beginning to realize that I could not shine this on any longer. I was realizing that I would have to take the initiative if I was going to get to the bottom of this problem. My doctors didn’t seem worried about me, but I was beginning to break through my own denial barrier and was coming face to face with an unknown adversary. I was reaching a turning point. I had to admit to myself that I was not well. This may sound like a small thing, but it wasn’t.  It was big.  It changed the way I saw myself and my condition. It allowed fear to overwhelm me. I realized how vulnerable I was. I could no longer say, “I’m fine,” and mean it.

I remember standing on the stairs in our house and looking beyond the windows into the trees. I asked myself if I should go to the emergency department and quickly got a resounding, “Yes!”  OK, I’ll just jump in the car and drive down to the hospital emergency room. Well, maybe that wouldn’t be such a good idea. My husband was busy working on a project, so I asked him if he could give me a ride when he finished. He took one long look at me and said, “let’s go now.”

We live in a small town with a small hospital and an even smaller emergency department.  It was a Saturday night – not the best time to go to an emergency department with an unidentified problem that did not appear to be life threatening. I seemed to be a curiosity at the intake desk. I wasn’t dirty and homeless. I wasn’t high on drugs or intoxicated. I hadn’t whacked my finger off with my chainsaw. I hadn’t fallen off a roof or been hit by a car. Those seemed to be the usual customer complaints and I seemed to be in good shape by comparison.  You say you can’t breathe? It must be hay fever, or asthma.  Maybe you’re allergic to something?

I spent 8 hours in the Emergency department in a little bed with curtains separating me from several other people. I got no treatment, just another EKG that showed slight cardiac irregularity’s.  I was continually asked if I had chest pains, which I did not.  Once I said I didn’t have chest pains, the medical staff seemed to relax and leave to help other patients. I have no idea what was going through their heads since they never gave me a clue.  The treatment seemed to be to wait.  If we wait long enough the symptoms will either go away of get worse and then maybe we can figure out what to do with you.

Around midnight a bed in the adjoining hospital opened up and slowly, with lots of paperwork and further questioning, I was released from the emergency department and hauled off to the adjoining hospital. I was relieved. If they were sending me to the hospital they must agree that something is not right and needs to be treated.   I thought my problems would soon be solved once I was in the hospital. I naively assumed a doctor would check me out, pronounce a diagnosis, and send me home to recover with a bottle of pills. I went to sleep that night feeling hopeful. Frightened but hopeful.

(more later)

Recovery Works for Physical Challenges

I wrote about this experience below at the request of the hospital where I received treatment for pulmonary thrombosis (which means “blood clots in the lungs).  While writing it up, I realized how similar this experience has been to my experience of recovering from mental illness. So I decided to share it with you on this blog.  By the way, I haven’t entered anything in this blog for several months due to being preoccupied with this condition.  Now I’m back!

I’m going to share this experience in chunks so we can look at the similarities step by step.  The first step in both has been my willingness to acknowledge that I was not well and needed help. I can see how I used my recovery and resilience skills to stay functional as long as I could.
But there came a point when those skills needed to be redirected to getting me the help I needed. You’ll see how challenging this was as I add more sections to the blog. This step is different for all of us, but there is common ground. Let me know what you think about the similarities.

My Journey through the Pulmonary Thromboendoarterectomy Wilderness to the Promised Land of Deep Breathing

June 30, 2017

I spent the month of May 2016, in Singapore. The weather was extra warm and humid, even for Singapore. I assumed this was why I was having trouble catching my breath. I kept complaining to my associate, Chris, that I was “drowning in the humidity and couldn’t breathe.” I had to stop and rest when we walked just one block up to the grocery store.  Catching the bus was even more of a challenge and my traveling companions had to wait for me to catch up. I had mild bouts of shortness of breath before traveling to Singapore, but at the time I explained them away as a sign of aging and didn’t pay much attention to them. Here’s a comment from the UCSD pulmonary patient handbook that explains my experience from a medical perspective.

The human body needs oxygen as an energy source for all of its functions. if the body’s oxygen supply is reduced, the body cannot function efficiently. One of the first indications that the body’s oxygen supply is inadequate is shortness of breath. Because oxygen is used for energy to perform physical tasks, shortness of breath occurs more often with movement or exercise.

I left Singapore and flew to Pennsylvania mid-month for a conference where I was presenting a workshop. I thought my breathing would return to normal once I was out of the heat and humidity. It didn’t. My ankles were swollen and I was still out of breath throughout the conference. I remember gulping for air during my presentation. Even in the face of this evidence, I was sure I would be fine soon and probably just needed a little rest. On the flight back to Singapore I struggled to make it through the airport during a plane change. I could barely walk or breathe. I had to stop after every few steps and rest. The usual signs of blood clots (extreme swelling of the legs, chest pains, etc) were not present except for the struggle to catch my breath.

Once back in Singapore I expected to get more uncomfortable due to the heat and humidity. And yes, it was even more uncomfortable than I had expected. Finally I had the courage to suspect something more than just the weather was happening to me. My denial held up though and my expectations of being “just fine” once home gave me the strength to override the fears that hadn’t surfaced yet.

(more later)

Surviving (Thriving) the Holidays

So, what are the down and dirty secrets to not just surviving but thriving during challenging times?


(continued from the Resilience Rise and Shine December newsletter)

So, what are the down and dirty secrets to not just surviving but thriving during challenging times?

The answer to this question may be a little different for each of us, but there are some common things we can all do that are tried and true no matter how unique we may believe ourselves to be.  There are the usual common things, like don’t eat too much crap, get some excise, get enough sleep, stay away from alcohol and drugs, etc.  This time of year, you can find a list like this in nearly every newsletter, woman’s magazine, and web advertisement.  So if we do those things we can keep our head above water. That’s called “surviving.”  But how can we “thrive?”  How can we use those challenging situations to actually build endurance, strength of character, develop insight and improve our attitude toward adversity? That’s whole difference level of being.

We start by doing the usual things listed above so our head will be above water.  Then the real work starts. The first tip is to not see it as “work.”  Let’s not make it harder than it needs to be.  Let’s see it as an opportunity to rise to a new level of maturity.

The next tip is to realize that all the trauma and drama is not “out there” so much as it is “in here.”  This has been a hard one for me to deal with. It’s been much easier for me to see faults in others and blame them for my unhappiness. There is usually enough evidence to make this stance credible.  So-in-so maybe self-centered and selfish; Lots of things are “unfair;” The weather may be nasty. That’s the evidence I use to prove that I’m OK and my unhappiness is caused by “them out there.” I can’t fix those things. It’s not even my job to fix them. It is my job to respond the them in ways that can strengthen me.  But where to start?

When I suggested above that we not think of this as work I didn’t mean to imply that it would be easy. But when you think about it, some of the things we do for fun are not easy. They are often hard to do and once we accomplish them we feel proud of ourselves. This is the way we can look at the challenges involved in thriving. Let’s try to stay in that frame of mind.

The next part is  being conscious of our thoughts.  Here’s a saying that may help us stay connected to ourselves and open to selecting new options that lead in the “thrive direction.”

Watch your thoughts; for they become words.
Watch your words; for they become actions.
Watch your actions; for they become habits.
Watch your habits; for they become character.
Watch your character for it will become your destiny.
Frank Outlaw

So let’s stay connected during the Holidays.  if any of you need support, add your comments and requests to this blog and the rest of us will be there for you.  Take care and best wishes for a wonderful New Year.


Do we break our own spirit?

I’ve been thinking about the ways I break my own spirit.

lori-arrowvista-fall-croppedAfter getting all that “bad boss” stuff off my chest, I’ve been thinking about the ways I break my own spirit. Spirit breaking can come from external sources, like from “bad boss” or from anyone who is in a position to abuse power. I’m realizing it can also come from internal sources – me. I don’t like to think about this but I can look back over my life and see how I’ve played a role in breaking my own spirit.

Maybe we should talk about what a “spirit” is before we make too many assumptions. I think of it this way – body, mind, spirit.  We can see and touch and smell our bodies. We know they are there. We are obsessed with our minds, so whether we understand our mind or know how to use it, we don’t quibble over its existence.  But our spirit?  What is that?  For me it’s is a source of energy.  It is a spark that lights a fire. It is a supernatural resource of energy we each have available to us and if we learn how to take care of it and use it, we can evoke that energy (Think quantum physics–this is where spirit gets a nod even though it’s referred to as something else.)

For me, my soul is one thing – sort of like a bottomless eternal pool of clear dark water that floats between my chest and my belly button.  My spirit is different. It is more like a bird that can soar hourlessly with enormous strength and endurance.  This may not be too far from how others have described spirit over the ages.  For example, one of the ways Biblical writers refer to the spirit is to liken it to a dove, or like the wind.

When my spirit feels broken, it feels like the little bird has broken wings and try as it might it just can lift itself off the ground of my soul. It needs rest. It needs to be nurtured and fed new hope to be able to soar again.

While the little bird has enormous strength, it is also very sensitive. It cannot tolerate negativity for very long and when I insist on ruminating on negative subjects its wings begin to break. And this is exactly how I break my own spirit. Let me give an example.

When we were beginning our former organization, we had so much hope and so many dreams for the people we were serving. We held high expectations for them and they rose to the occasion. People who had been on case management for years and who’s medical charts and records were littered with poor prognoses came to life when they got a whiff of hope and could see new possibilities of working, owning a car, buying a home on their horizons. When obstacles arose that threatened to crush these dreams, I was often taken out by them.  When case mangers couldn’t see the vision of recovery; when licensing agencies balked at letting us design recovery-friendly facilities; when funders refused to fund programs that promoted recovery and instead insisted on worn-out and ineffective services, I often melted down.  I could pull myself together and get back into the fray, but I lost a lot of ground by being knocked out by the barriers.  As I look back, I didn’t need to go through those wipe-outs. I could have trusted myself and my ability to move beyond barriers. But for some reason I chose to let those barriers break my spirit. Time after time my wings were broken and it took a lot of effort to get back up.

Maybe there is something to the phrase, “strong in broken places” because I think I got over the habit of breaking my own wings by watching myself get back up so many times.  Maybe I needed to see that I had something so say about being broken and I didn’t need to give in to it. I didn’t need to break so easily and I didn’t need to break at all.

A few months ago I had a very legitimate reason to break my own spirit. More about this later…..

Bad Boss Experience

there are a lot of things that can break our spirit and bosses are in a key position to do just that

lori-tulips-backgroundI’ve just read through the comments from those who wrote in about the first post on broken spirits.  Seems like there are a lot of things that can break our spirit and bosses are in a key position to do just that. I’ve been asking around and find that nearly everyone one has a “bad boss” experience at some point in their career.  So if you are having a “bad boss” experience, you are not alone, even though it may seem like it.

I’m going to begin with a summary of what we’ve heard from our comments about what has broken people’s spirits.

The jealous boss

This is not uncommon, however in most cases the subject of the jealousy is not the personal gains of an employee. This happens, but not as often as the threats of the personal characteristics of the employee.  Insecure bosses can easily be threatened by employees who are smarter than they are; have more skills in specific areas; have community contacts that are influential; are better liked by colleagues and upper managers or corporate leaders than they are.  When this happens, sabotage can be the result. Spirits can break.

False accusations

When an organization needs a “fall guy” it can often be the lowest employee on the totem pole, the employee that is most threatening to the status quo, simply the employee who is the closest to the problem, or the messenger. This really hurts and is a vial spirit breaker.

Unpredictable underhandedness:

This is so painful. Part of what makes this so hard is the predictableness of it.  It is like the old “double messages” we used to think caused, or contributed to, Schizophrenia – that’s how powerful it is!  It is a powerful way to break a spirit. It crushes the ability to trust and feel safe. These are two prerequisites to building a strong spirit, either within one’s self or within an organization. The most hurtful aspect of this spirit breaker is the betrayal aspect.

No information

This is very subtle, yet a powerful way to eat away at spirits. It leaves one feeling isolated and alone instead of being part of a team or organization.  When there is no information, one can feel like an outsider. It makes it hard to identify with the purpose,  and in fact hard to establish an identity at all since there is nothing to build on or to connect to. This is also true for misleading information or inaccurate information.


Underneath all spirit breakers is this one powerful culprit – fear.  When we are afraid it is very difficult to be our authentic self. It is also very hard to feel safe when there is a constant threat of fear.  In a spirit breaking situation, fear is often used to control others, like the story I told of my work experience from a spirit breaking boss.

So how do we survive, or perhaps even thrive, in a circumstance that is fear ridden and spirit breaking? Is it even possible to thrive?  We’ll see… has to do with building one’s spirit on solid ground so it can withstand the tremors of massive quakes.

The Broken Spirit

In this post we are going to focus on developing strong spirits, both individually and organizationally.

lori-tulips-backgroundIn this post we are going to focus on developing strong spirits, both individually and organizationally. To get us started on a serious note, let’s begin by taking a close look at the not-so-pretty, not-so-happy, broken spirit.

If we want to understand how to build our spirit and the spirit of our organization, we need to look at how spirits get broken. This will give us some key insights. We will be better equipped to know when our spirit is breaking and can take action to preserve it. If it’s broken before we know it, we can learn how to mend it.

I am a rather high spirited person so I have had more than my fair share of a broken spirit. Not staying in one’s box can leave one venerable to “breaking” so I have a lot of experiences of breaking and mending. One time in particular comes to mind. It was one of those long drawn out breakings that went on for a few years. These are the worst kind and the kind that is hardest to get over. It’s sort of a chronic brokenness as opposed to an acute painful break that is over quickly.

I was working in an organization that was fun with high energy. We were doing creative work that was meaningful and rich. Then our boss left for another position and we inherited the meanest most sinister boss I have ever met. He worked from a mindset of “command and control” which was the polar opposite to what we were used to. He did not appreciate our creativity and in fact, he was the only one who could have a new (or even an old) idea.

This new boss’s management style was based on intimidation and humiliation. When he could, he would fire one of us, much like a terrorist kills a hostage in order to scare the other hostages into compliance. This is how he controlled us. We hated him.

I had a reoccurring fantasy that helped me cope. It went like this: I’m in his office and he is telling me how incompetent I am. He often says, “You just don’t get it do you!” As I leave his office, I turn and close the door, and hold it closed from the outside. He tries to get out but I am stronger than him and I can hold the door closed against his jerking on it. He is yelling to be let out but I don’t stop holding the door closed. Other employees see what’s happening and we take turns holding the door closed. The boss calls the cops. The cops come and we tell them that he is dangerous to others and needs to be retained in his office for all of our safety. The cops leave and we hold the door closed for days.

Occasionally one of us would get the notion that we could win him over, or that we were his favorite, and we would, for a moment, turn on our fellow employees in the hope of gaining a little grace from him. This trap always failed and after a couple years no one tried it anymore. We, for the most part, banned together for survival. He united us, no matter how large our differences, against him. Of course we dared not let him know that because it would have meant certain termination.

Something happens to mistreated employees. We become like a battered wife who does not leave a violent and abusive relationship. We come to believe that we are so useless that no one else will hire us, so we stay. The longer we stay, the more profound our brokenness.

Rise and Shine

What I know for sure is I want to bring to light the incredible energy we can derive from tending to and mobilizing our spirits.


Hello my friends,

I’m looking forward to writing about things that I’ve found essential to maintaining my recovery, building resilience, and offering the best I have to those who use our services.  I hope you’ll join in with questions, comments and deeper thoughts about those things that make our lives and our work meaningful and relevant. We’ll be discussing the ways to build the spirit of resilience, and also the things that tear it down. What we discover can be applied to our own personal character building and growth experience as well as to organizational transformation.

What I know for sure is I want to bring to light the incredible energy we can derive from tending to and mobilizing our spirits.  I have had many positive responses to the webinar I did in September on this topic so I know this is an area of interest. Over 500 hundred people joined that webinar and many others have watched it since.

Along this same line, I think we could all benefit from learning how to use painful and stressful experiences to our advantage. For many years I ran from pain, avoiding it at all costs. By doing this I deprived myself of the crucial learning opportunities that being pinned down by pain, anxiety and depression can give us. I still don’t like it, but I now try to learn from it. It’s made a big difference.

So, I invite you to check in on Lori’s Blog from time to time and please do add comments to share the insights and wisdom you have gained from your experience.loris-signature