Saying Goodbye to Those You Love

Journal from August, 2003

I have heard stories about people who died of an illness and their family never even knew they were sick to begin with. They hid their medical prognosis and died alone. How could someone not let their family know they were dying? Why would they be so secretive? Were they cowards or martyrs? I never understood this.

I never understood…until now. Doctor Newland told me weeks ago that I only had six months to live and I still haven’t told my family. I just got back from a week at the beach in which everyone was there. All I could think about was telling them. I didn’t have any fun and I was being a real bitch because all I could think about was whether or not to take this opportunity to reveal my news and ruin their vacation. Ultimately, I left without saying anything. A few miles from the beach house, I pulled over to the side of the road and contemplated going back to make my announcement. I just couldn’t do it. I left the beach and cried most of the way home.

When is the right time to tell all of the people you love that this is the end of the line? What day is a good day for learning this information? A weekend, perhaps, so you can process before you go back to work? But I’ve just ruined their weekend. Should I tell them individually or as a group? Can I just keep this information to myself? Would that be wrong?

This is, by far, the hardest thing I have ever had to do. I wish I could just run away and die alone. I get it now, I really do.

The Vulnerability of Illness

In so many ways, illness challenges us to question who we are. Often, it takes away parts of our identity and leaves us wondering what is left to take. If that isn’t enough, we then find ourselves being handled by strangers and stripped of our independence. Despite our age, we all must struggle with the feelings of helplessness that usually accompany childhood. Like a passenger on a runaway train, we have no access to the brakes and can only pray that the ones in charge will take good care of us. It is quite a disturbing place to be.

Example 1:

The day after my first transplant, a team of physical therapists descended upon me and took me for a walk around the halls of ICU. I was still on the ventilator so they had to disconnect me from the machine. As a replacement, they attached the tube in my lungs to a bag. One of the techs had to squeeze it to breathe for me. I was miserable and very freaked out. With each squeeze of the bag came another surge of anxiety. The techs were happily chatting about their weekend or some other non-medical topic. What if the one breathing for me lost focus and missed a squeeze? What if he got off rhythm? I couldn’t talk and it was all I could do to take the next step. My most basic bodily instinct, breathing, was being controlled by someone whom I had just met and who didn’t seem to take this responsibility very seriously. I was at his mercy in a way that I had never been before and couldn't have imagined. Of course, he did his job and I was returned to my bed unharmed. Nonetheless, I was thrilled to be reconnected to the machine. It seemed much more reliable and made me feel far less vulnerable.

Example 2:

I was filled with tubes. I had IV’s in my neck, a tube draining my urine and what felt like a fire-hose coming out of my nose. My mother and my husband were by my side as I underwent my first big contrast study after the Nissen Fundoplication. When the test was done, they offered to wheel me to my room in order to avoid the long wait for transport.

The test had been done in the basement of the hospital, many floors and a few wings away from the safety of my private room. Getting back proved to be a challenge.

My husband was pushing the wheelchair and my mother manned the IV pole. Sometimes, the long IV tubes would get caught in the wheelchair. It was a much more difficult endeavor than either one had anticipated. With caution they made their way through the hospital and we ended up in the familiar territory of the main hospital lobby. This lobby stretches along the entire front of the hospital and leads to the elevators that would take us back to my room.

I had never noticed it until that day, but not many in-patients are in that lobby. I was the only one I saw in a gown. I was certainly the only one with a fire hose taped to my nose. I became acutely aware that my urine was on display. I felt terribly embarrassed. I put my head down and braced myself until we had cleared all of the many fixated eyeballs. On that journey, I understood the value of the professional transport system: they would have gone the back way.

Later, I told my husband how the trip through the lobby made me feel. He had no idea that I was feeling that way and he felt horrible about it. I knew he hadn’t intended to embarrass me but he apologized anyway. I think this experience was a tremendous learning opportunity for him. I know he will look at things a little differently given a similar situation in the future.

The Verdict:

There is a big difference between emotional vulnerability and physical vulnerability. I can choose to let someone see my deepest feelings, share my most painful experiences and I can choose to stop the sharing at any time. In a similar way, I can choose to be physically vulnerable but would only do that with someone I love, trust and want to have that kind of intimacy with. However, when I am laying in a hospital bed and I am being touched and moved and wiped (I'm sorry, but that is reality) I can not imagine being able to let myself feel ok about that physical vulnerability. It is more like an assault than it is like the voluntary giving that you share with someone you love. Yes, it helps if the caregiver is the same sex. Yes, it helps if they are very sensitive to what is happening. Honestly, though, I have a very hard time imagining a situation in which it could ever feel empowering.

As a sick person, you can feel like you spend your life at the mercy of others…waiting for them to bring you food, medicine, oxygen. Being pushed in a wheelchair at a speed and route not determined by you. Being sick feels like being out of control.

Caregivers can make a big difference in how vulnerable someone in that position feels. Simply by being gentle and respectful with their body can make a huge difference. You can never underestimate the value of your kind words (or lack thereof). In small moments that are simply routine parts of life with illness, you have so much power to change the way a patient feels.

As a patient, you will have to find the balance between organizing your care in such a way that allows you to retain some control and accepting that there will be times in which you will have to hand the reins over to someone else. There is no easy solution for this problem. Vulnerability is one of the most emotionally painful parts of illness.

Mistakes, Mistakes, Mistakes

We expect a lot from our health care providers. Perfection, in fact. They are never allowed to make mistakes and if they do, we sue them for all we can get. We hold them to extremely high and sometimes paradoxical standards. For example, I want my surgeon to have a soft bed side manner but equally, I want him to exude the kind of confidence that would never make me doubt his competence. More so, I want him to be equipped with an ego that would not allow him to ever doubt his own competence. For one individual to possess the proper inner balance that would be required for both gentleness and a very high opinion of oneself…well, that would be a very unique individual indeed.

In short, patients and families often expect the impossible. There is nowhere to go from there except to anger and disappointment. The truth is, mistakes will happen in medical settings. Doctors are only humans, right?

There is a fine line between an honest mistake and unacceptable negligence. It is important to define these two for yourself. When a mistake is made, you have a choice on how you would like to handle it.

Example 1:

During one of my hospital stays, I was dreaming about water. I was all wet and couldn’t seem to dry off. Something wasn’t right and I eventually pulled myself from the dream into consciousness. Looking down, I could see something shimmering against the dull light from the hallway. I touched my chest and it was cold and sticky. I turned on the bedside lamp to discover my clothes were completely soaked in blood. Panicking, I buzzed my nurse. By the time she arrived, I had already figured out the problem. My nurse had come in while I was asleep to draw blood out of my Port-a-Cath and failed to properly clamp it off. The line to one of the main arteries in my body had been left open and I was drenched in my own blood.

Amazingly, this didn’t seem to have any negative consequences. Perhaps this is why I had no problem forgiving her. After all, it made a great story!

Example 2:

I had been waiting for lungs 5 years when I got a page at 4:00 on a Tuesday afternoon. They had lungs for me. My family and I rushed to the ER to begin a many-staged process leading up to the operating room. Eventually, we learned that the surgery was “a go” and we celebrated the arrival of my new lungs.

When I woke up, nothing was as I had been taught it would be. I was still in the holding area outside of the OR, not ICU. I was not intubated. I had an oxygen mask covering my face and I could barely breathe.

When the nurse saw that I was stirring, she turned on her heals and fetched my surgeon. He sat next to my head and spoke in a quiet, humble tone that I had never heard him use. He explained that I did not get my lung transplant. While I was under anesthesia, one team was working on me and preparing for the new lungs while the other team was off somewhere else getting the organs to bring home. As the story goes, the cardio-thoracic surgeon took too much of the “tubing” that is essential in properly connecting the heart and lungs. My new lungs simply didn’t have much “tubing” to work with and it made my team nervous. At this point, I had already been cut open and they were about to take the first lung out. The dilemma was this: close me back up and risk that my very sick lungs would never recover from the trauma or make do with the donor lungs and take on a much more difficult surgery with many complications to overcome. After much discussion, they chose to close me back up and hope that I could survive this set back.

Obviously, I did survive but not without repercussions. Before this incident, I was not on oxygen. Afterwards, I was quite disabled and relied on oxygen 24-hours a day. This was frustrating and cause for a few breakdowns.

Despite this unusual and disturbing event, I wasn’t angry with my surgeon. Partly, because it didn’t seem like his fault. Mostly, because he was so sorry. He didn’t apologize once and then give me a pep talk about how it could be worse. He apologized in some way, every time I saw him. Not just for a few weeks, but for a few years. He wasn’t being manipulative because he thought I might sue. He was sincerely saddened by what I had been through. This made all the difference.

Example 3:

A friend of mine had chronic sinusitis. He struggled with it for years and ultimately decided to have sinus surgery. While it is known to be a painful recovery, it is a common procedure and not one that he had many worries about. Unfortunately, my friend awoke from this “routine surgery” completely blind in one eye.

The records that were taken by the surgical nurse were upsetting. During the operation, no attending was present. The entire procedure was done by a young resident. Apparently, the resident found himself “lost” inside the sinus cavity and instead of stopping and calling in help he decided to continue poking around. He poked around so long that he eventually broke through the sinus wall and severed the optic nerves. The sinuses were never cleaned out and my friend spent the next few months visiting eye specialists who concluded that there was no way to repair the damage.

In speaking to other ENT doctors I’ve learned that it is not unusual for someone who is inexperienced to get lost inside the sinus. What is inexcusable is that the doctor did not call in an attending. My friend lost his eye because of one person’s unwillingness to ask for help. In this case, the doctors were sued. After a few years, my friend was awarded some money for his suffering. I think, if he had a choice, my friend would rather have his eye instead of the cash.

Example 4:

My friend’s grandmother, Elise, went in for a minor surgery. During the operation, her doctor nicked her bowel. While that is unfortunate, what is tragic is that he chose to pretend that it didn’t happen and he closed her up without addressing it. In the following months, Elise got sicker and sicker until the mistake was finally discovered. She spent the rest of her life going in and out of hospitals and struggling to manage all of the new health problems this created for her. Complications from this mistake finally took her life.

While it is an outrage that the doctor, who later admitted that he knew what he had done, ignored his mistake, I can’t help but ask myself some questions. If we lived in a society where we were more willing to accept the possibility of human error, would he have been more likely to admit his misstep? If he was not almost surely facing a malpractice suit, would he have been less afraid to confess the slip of his hand? I’m not condoning his actions but I am wondering where the line is drawn between “malpractice” and “reasonable human error”. I can’t help but wonder how differently things could have turned out if he had been willing to speak up instead of cover up.

The Verdict:

I used to be a student in cosmetology school. My hands would shake and I would feel sick at the idea of having someone's HAIR in my hands. What if I gave them a bad hair cut? How could I live with myself?? And, in fact, when I did ruin somebody's hair, I spent many sleepless nights worrying about her and wishing I could go back in time and fix it all.

That said, I can't even begin to fathom the feeling of having a life in your hands. I couldn't do it. As a patient, sometimes I forget to give my caregivers credit for the magnitude of what they do.

While it is true that we should hold our doctors to a high standard, when does that standard become too high and therefore counter-productive?

As a patient I must let go of unrealistic expectations…doctors are human. I also must take responsibility for what I can protect myself against. When and if honest mistakes are made, I must practice forgiveness. There is nothing to gain by hating them.

As caregivers, there must be a value placed on honesty and humility. I am much more likely to understand a mistake if it is approached directly rather than hidden or underplayed.

In many ways, technology has moved faster than our consciousness. We continue to carry the old perceptions of doctors as “gods” and infallible. Therefore, when they do fall, we are outraged and feel victimized. The truth is, we are living in a new age of medicine where much can be done and much can go wrong. There is a time and a place for lawsuits but there is also room for accepting the risks that come along with our “modern miracles”.

The Death Bed Myth

Journal from September 10^th, 2003

I suppose I have seen lots of movies in which one of the characters is dying. I’m not really sure where I formed my unconscious fantasies about the way things would be when I was on my death bed. All I know for sure is that I had a belief that when I was dying, things would change. I believed that:

-the world would slow down, maybe even stop

-I would be surrounded by loved ones at all times

-relationship conflicts would miraculously resolve

-there would be many deep confessions, laughter and tears

-worldly things would cease (bills, toilet malfunctions, dirty dishes)

-I would know I was dying

It is a shock to discover that my vision of what lay ahead was more a mirage than a reality. I have been very surprised to find that:

-The world keeps spinning at the same speed.

-People still go to work and live their lives

-Difficult Relationships are still difficult and actually can become more so

-I have a great amount of ambiguity around death…when exactly does being really sick cross over to “dying”? They feel very much the same!

News Flash! Dying isn’t as glamorous as they make it look on Soap Operas. It’s actually quite lonely.

My Patient Resume

I’m not sure why, but lately I’ve been attempting to remember where all of my scars come from and how many there are. Just for funzies, I thought I’d list all of the things I’ve had done to this little body...

Pokes:

1. 3 Triple Lumen Catheters

2. 1 Port-a-catheter

3. Around 10 “Mid-lines”

4. Around 10 PIC lines

5. More small IV placements than I could count

6. More blood draws than I could count

7. Around 6 Blood Gases (OUCH!)

8. Many, many insulin injections for diabetes

9. Many, many jabs to test blood sugar

10. 9 Chest Tubes

11. 2 Spinal Taps

12. 4 Epidurals

Stomach Stuff:

13. 1 G-Tube

14. A Nissen Fundoplication

15. A Pyloroplasty

16. Too much Go-Lightly (cruel brand name)

17. Enzymes, enzymes, enzymes

18. PH probe

19. Motility Study

20. Esophageal Study

21. 3 Endoscopies

22. 5 NG tubes

Lungs Stuff:

23. 2 Double Lung Transplants (of course)

24. Somewhere around 20 Bronchoscopes

25. An equal number of Lavages

26. Galloons and Gallons of IV antibiotics

27. Daily Nebulizer treatments

28. Intubation

29. More chest X-Rays than I could ever count

30. More Pulmonary Function Tests (PFT’s) than I could ever count

Head Stuff:

31. Around 7 CAT Scans (lung and sinus)

32. 1 MRI (sinus)

Medications:

You wouldn’t believe it if I told you…

The Power of Expecation

I heard about an experiment once where they blindfolded people and put different kinds of tastes in their mouth…salty, sweet, sour. The first time they told them what to expect before they placed it on the tongue and, no matter how bitter or distasteful, the reactions were minimal. Then, they started giving them false information, like telling them it was going to be salty and it was really sweet. Despite the fact that what they got instead might have been more pleasant to taste, the reactions were strong and they were mostly anger or frustration.

I think of this experiment often. As a patient, it can be extremely upsetting to have a result you had not anticipated. Aligning your expectations with what is likely to occur is essential.

Example 1:

When I sat down with my surgeon, he told me that after the lung transplant I was going to feel like I “got hit by a Mac truck”. I was startled by his candor, but his strong warning allowed me to brace myself for what lay ahead. After my transplant surgery, I did feel like I had been hit by a Mac truck. Since I was expecting it, however, I wasn’t worried and was much better equipped to cope with the pain. I knew what I was experiencing was normal and I was able to almost relax into the discomfort.

When I sat down with my GI doctor before a G-tube placement, which is a day procedure, he told me it would feel like I “got stung by a bee”. It didn’t feel like a bee sting: it was very painful. For weeks every twist of my torso, every jolt of my step sent shock waves from stomach throughout my body. I spent my time worrying and crying. This was supposed to fee like a bee sting, right? I naturally assumed that because my experience was so vastly different than what I had been told, something must be terribly wrong. In fact, there was nothing unusual about my pain except the lack of warning. I had been mislead by my doctor.

When I think back on both experiences, the trauma of my G-tube was much more intense. I remember telling people that I would rather have a transplant than a g-tube placement! Wow. The power of expectation.

Example 2:

Three years after my second transplant, research started coming out that showed a connection between Chronic Rejection (a recipient’s greatest enemy) and acid reflux. The theory being that, if we have high PH acid in our stomach, we can aspirate that acid in our sleep. This, in turn, causes damage to the airways and may trigger Chronic Rejection.

The solution for this is a surgery called a Nissen Fundoplication. It is essentially a way to wrap part of the stomach around the esophagus so that acid can not reflux into the airway.

Because of my history, my team strongly urged me to have this surgery. I was not having any problems with my lungs and this concept was not completely persuasive. I resisted for many months as the idea of undergoing another surgery was quite unappealing. Deciding whether or not to go ahead with an elective surgery that would help me only in theory and when I was in a stable, healthy condition was one of the most difficult decisions I have ever made. Ultimately, I chose to move forward in the name of “doing everything I can to preserve my health”.

There was just one problem. Despite my insisting to speak with another patient with my body size (I am small and have trouble keeping weight on) as well as my history of transplant, nobody was able to produce such a person. All the cases presented to me were men. In addition, tests indicated that I needed to have a second procedure called a Poloroplasy. This would be the solution to problems that were likely to occur as a result of the first procedure! Again, nobody I talked to knew anybody who had done both of these surgeries at the same time. I was going into un-chartered waters.

You would think that going into the surgery so blind, I would have no real expectations. It didn’t work that way. I still sought out people to give me some sense of what was to come. I spoke with a nutritionist about my concerns regarding losing weight. She gave me a liquid diet that would allow me to take in 2,500 calories a day so I could keep my weight on even when I wasn’t able to eat solid foods. Piece of cake! My surgeons told me I would be able to go back to work in ten days. Easy as pie! My transplant team told me I would feel badly for a day or so and then I would be fine. Walk in the park!

As you might have guessed, it was not a piece of cake, easy as pie or a walk in the park. I was unable to ingest anything for over a week. I was so severely nauseous they had to use every drug possible to keep me from retching and tearing the internal sutures. (I still had a few horrible bouts of retching anyway) I lost over ten pounds and I was only 109 to begin with. For weeks I was absolutely miserable and completely unprepared.

My reaction was anger and regret. I was angry at myself for doing the surgery. I was angry at the nutritionist who acted as though she had a lot of experience with this procedure. I could barely drink ½ glass of water, much less 2,500 calories a day. I was angry with all of my doctors who did not tell me how hard this was going to be. I deeply regretted my decision.

It wasn’t until I healed, a month or so later, that I was able to take a step back and see what had been so obvious all along. This hadn’t been done before so why would I expect anyone to be able to predict the results? I was looking for answers and was only receiving guesses. (To my credit, the guesses were really presented as facts. I wonder if I would have gone through with it if I had gotten the honest answer: "We just don't know"?) Sometimes, when you are facing something scary, you want reassurance so badly that the truth isn’t very clear. I ignored the facts and listened with my fear.

If I had to do it over again in the exact same circumstances, I would resist the urge to find “answers” and look at it as an exploration. I would assume the worst. My only expectation would be that I was going to be the person that taught them how to do it better next time.

The Verdict:

Of course, you can never know exactly what the future holds. Sometimes things go wrong and your experience is much worse than the “normal” case. Sometimes, what is horrible for one person is a breeze for another. Sometimes, there is no “normal” and you have to decide if you are willing to be a pioneer. No matter what, there is always going to be the variable that is the individual.

Having said that, a patient’s most powerful coping mechanism is often properly aligned expectations. This includes pain levels, surgical recovery times, medication side affects, length of stay in the hospital…the list goes on and on. Talk to your doctor and ask the scary questions about best and worst case scenarios. Seek out fellow patients with similar medical histories who have had the treatment done before you. If no precedent has been established, assume there will be difficulty. It is much better to prepare for the worst and hope for the best than to prepare for the best and be surprised by the worst.

Why Am I Crying, Really?

There is a point in which emotions and body chemistry intertwine and that can make life very confusing. There was a time when I was on high alert to my emotions. If I cried or felt depressed, I diligently sought out a reason with intent to “fix” it. In time, I have learned that there may not be a reason and there may be no need for “fixing” anything. Instead of reacting to my intense emotions, I more often ask myself “Why am I feeling this way, really?”

Example 1:

When I was in my mid-twenties, there was a period of about one week in which I cried most of the day, every day. That doesn’t sound like a long time, but it felt like months. I was completely disabled by my emotions. I would fluctuate from a few tears to hysterics. I had friends that I would call and cry to on a regular basis. Some of them tried their best to assign a good reason for my distress. The theories were astounding! A popular one, and one I attempted to work with, was that I was grieving the future loss of my lungs. I was preparing to move back home for my transplant and therefore I was unconsciously sad about the prospect of my body parts being replaced. Yes, we were grasping at straws. The emotion was so out of control, however, that there was a desperation to hone in on the problem and resolve it.

One night, I was sobbing in my bed. I thought I was losing my mind. I got up and began to get dressed. It was time to check myself into the funny farm. I needed help and I couldn’t stand the mysterious angst any longer. Ultimately, however, I chose to put off the funny farm, got back in bed and decided I’d start by calling a therapist in the morning.

I got a few names from my CF doctor and placed a few frantic calls to local psychologists. None of them called me back. (What’s up with that?) I was left to my own devices.

I don’t know what made me think of it. I don’t know how the bell went off in my head. Nonetheless, like a light bulb in a dark room, it dawned on me that all of these problems had started around the time I began taking birth control. I called my gynecologist and spoke with her. She explained that I must have a problem with estrogen withdrawal. I am fine when I am on the pill but when I take the sugar pill, during the week of my cycle, my body reacts to the lack of estrogen. In short, my hormones were making me crazy. I can’t tell you how much I wished I had been informed of that possible side effect!

Example 2:

As much as I want to interact and enjoy myself, I just can’t physically find the energy. As much as I’d like to be able to engage in conversation, my brain is simply out of order and I can’t form clear thoughts. As much as I’d like to smile, my mouth is too heavy and it remains flat.

This is how depression feels. This is how fatigue feels. This has been a part of my illness.

For so much of my life, I have thought of myself as a somber person. I have labeled myself “serious”, “dull” and “dark”. That is, before I started getting more sleep. The difference in my personality when I am sleepy and when I am energized is striking. My body needs more sleep than the 8-9 hours a night suggested by the experts. If I miss some sleep, I must make up for it with naps. If I don’t, I will quickly fall back into my fatigue and depression.

There were so many years that I was unaware of this need. Instead, I went about labeling and identifying myself by the behaviors that manifest when I am just exhausted. Today, with consistent and sufficient rest, my husband thinks of me as “One of the happiest people he has ever known”. I still laugh when he says that. It’s so hard to see myself in a different, cheerful light.

The Verdict:

There are so many things that can affect our mood. Sleep. What we ate. Medications. Hormonal cycle. Blood Sugar. Pain. And yet, it is often our inclination to search for an emotional source instead of considering a physiological one. While I am a huge fan of dealing with emotions, there are some feelings that will only pass with time or a physical adjustment. Did you know that it is possible to cry as a release without assigning a meaning to the tears? I didn't.

To act on physiological emotions can prove hazardous to one’s life. How many times have I decided that my feelings were related to a person, had a fight with them and then regretted my words once my physical state resolved? Too many! How many times have I gotten fed up and threatened to quit my job? Pretty much every month around “that time”! How many times has rage flared up within my chest at the mere raising of someone’s eyebrow? Every time I take a certain dose of prednisone!

It is important to pay attention and consider biochemical reasons for emotions, especially when you are dealing with illness. Unfortunately, you can not make negative feelings disappear with your desire. You can, however, allow them without needing to act on them. Often, discovering that an intense feeling is coming from your physical state, not a problem with your life, can be a relief. That alone can help to calm the storm. Regardless, one must hunker down and wait for the storm to pass without doing too much damage to your life in the meantime!

A Letter to My Beloved Husband

To My Dearest Jason,

I was talking to a friend today and she was telling me about a mutual acquaintance who recently started dating a woman with a serious heart defect. Her life is hanging in the balance. My gut reaction was to ask “Why is he with her?” It seemed almost masochistic to become involved with a woman who would soon be dead. As soon as the words fell from my tongue, I was struck with panic. How could I, of all people, say such a thing? For just one fleeting moment, I saw myself through your eyes.

You fell in love with a woman who, relatively speaking, will soon be dead.

I have been living with illness for so long that I have become immune to some of its horrors. It was easy for me to put those scary parts aside and focus on the beauty of our connection. From my perspective, our love was simply too powerful to walk away. I was fully immersed in the romantic ideal of true love and understood only a portion of the gravity of your position. But, in the moment when I saw it in other people’s lives, I was able to appreciate the choice you had to make. Love with loss or walk away. Many would have chosen to walk away. You chose to stay and walk into the unknown realm of uncertain health and a precarious future.

In the few years we have been together, you have provided me with a sturdy platform on which to stand. I have been able to reach for things that would have been impossibilities without the foundation of our relationship. You have given me unwavering love and treated me with a kindness I always thought was reserved for characters in fairy tales. You challenge my intellect while respecting my individuality. You hold my hand while helping me to my feet so that I may walk on my own. You do not judge me, you are always on my side. You are my perfection.

When I think of you as the man who is with the woman who will soon be dead, it makes me sob. You deserve a relationship built for a lifetime of happiness, not just a sample. You deserve all of the strength, insight and kindness you have given me. You deserve forever. It just doesn't seem fair. Why should you get the short end of the stick?

Sometimes, I simply do not feel worthy. What have I done to deserve such an extraordinary man? The only explanation that makes any sense is that God has given you to me, and me to you. I don’t know why and I don’t know how. I do know that to second guess it would be foolish. The only smart option is to cherish it and I will do that until the day I die.

You are my everything. It is such a helpless feeling to know that you will lose me someday and I can not protect you from that grief. I can only hope that we will continue to use my illness as a constant reminder to treasure each day we have together. I can only pray that the life we share today is worth any pain the future may hold.

I love you.

~Me

A Bath Tub Moment

Journal from March 17, 2004

I’ve been working very hard to accept my fate, no matter which way the wind blows. I have found a place of equilibrium and I am happy with my options; life or death. (I guess I have stopped thinking of it as death, really…it’s more a graduation.) I have exerted plenty of time and energy into anticipating and preparing for both scenarios equally. It has taken a few months, but I have achieved my goal and feel proud of it.

Tonight, however, I had a moment of clarity and confession (not the Catholic kind!). I was taking another long bath. That is where I do some of my best thinking and praying. I said to God, “God, I know I don’t really get much of a vote on this living or dying thing. I know that it is in your hands if I stay or if I go. For what it’s worth however, if I did have a vote, I would like to stay. I would like to take all of the things I have learned, all of the growing I have done, and use it to serve you. It seems a shame to me that I could have gained so much insight in the last few months only to die without being able to share it with anyone. So God, if I do get a vote, I’d like to stay.”

That was the first time in awhile that I have allowed myself to choose a side. It felt good to admit what I really wanted. It felt scary to know that I actually do have a preference.

On March 28, 2004, roughly one week after this moment, I had my second transplant. Since then, I have always wondered if this “talk with God” had anything to do with it.

Awareness and Boundaries

No matter which hospital you go to or which doctor you see, the potential for mistakes to be made is simply a reality that can not be ignored. In 2006, USA Today reported that “Experts estimate that medical errors claim about 98,000 lives a year — more than 250 lives a day — across the USA.” I can’t help but wonder how many of those mistakes could have been avoided if patients were more pro-active in their care. With Knowledge being the first key in protecting yourself in a medical setting, Awareness and Boundaries are close behind.

Example 1:

I wish I could be more technical about this example. I feel confident that the fact that I can’t remember the exact name of the medication will make people doubt the validity of this occurrence. But I promise it’s true.

When I was in the hospital after lung transplant number one, I was receiving injections. I can’t remember why, or, again, what the name of the medication was. What I do remember is that I was told by my nurse that I should only get this injection once a day. As she administered it, she stressed this to me and I remembered.

One evening, right after shift change, another nurse came in with a syringe. She told me it was time for the injection. I immediately protested that I had already received that dose for the day. This nurse absolutely did not believe me. After all, I was the one taking high powered narcotics, right? At my insistence, she rechecked the chart and reported that it had not been noted and therefore it had not been done. I was adamant that it had and insisted she call the previous nurse at home. I was walking a thin line and she was getting irritated. Nonetheless, she followed through and left my room to make the call.

Minutes later, she came back in with her face quite flushed. She apologized profusely and acknowledged that I had indeed had the injection earlier that day. The previous nurse had confirmed this and was mortified that she had not marked it in the chart. With her hands a little shaky, the evening nurse put her hand on my knee and whispered “It could have killed you”. I smiled and was very glad that I had been paying attention.

Example 2:

Of all the procedures I have ever had done, blood draws have been the most frequent and numerous. Unfortunately, because of all of the IVs and needle pokes I’ve had in my life, I only have 2 veins left that can be used to take blood. They are both in my right hand. These veins are extremely valuable to me and I guard them like a vicious watch dog. When I walk into the lab or wake up to a phlebotomist in the hospital, I know that they don’t understand my history or how precious those veins are. It’s my job to set boundaries to ensure they don’t get blown or otherwise badly scarred.

I establish immediately with the phlebotomist that they get two tries. If they are unsuccessful and do a lot of “digging” they must stop and find someone else to do the job. Preferably, someone with more skill or experience. Strike two, you’re out.

Occasionally, I will notice that when I tell them they must draw from my hand, their eyes fill with fear. They stumble around and can’t figure out which tube goes with which test. These are the “newbies”. As rude as it sounds, I don’t let newbies draw blood. I am very unpopular when I announce that I would like them to go get their superior and have them do the draw. Some argue but most sheepishly walk away and get their boss. The boss most often does a wonderful blood draw, even with the scowl on her face. I realize that just because someone is new doesn’t automatically mean they won’t be good at what they are doing. Nonetheless, I have enough experience to know that it often does mean just that. I go with the odds.

Often, I leave the lab or hear the door of my hospital room slamming shut knowing that I haven’t made any friends. I’m sure all kinds of nasty things are said behind my back. When I look down at my hand, however, and see that my veins are still in one piece, I really don’t care.

The Verdict:

Remaining aware of what is being given to you and on what schedule can be taxing. Establishing boundaries with those caring for you can be very uncomfortable. Nonetheless, this is what must be done in order to ensure you are getting the best care. This means being aware of what medications interact with the medications you are currently taking, or at least never forgetting to ask. This means knowing your body and what could be detrimental to you, despite that it may even be “routine”. This means educating yourself and then finding the skills that will allow that knowledge to protect you. Don’t lay back and relax. Keep an eye on what is being done to you and learn how to ask people to step back and change their approach. Trust me, you’ll be happy you did.

A Letter to Medical School Administrators

To Whom It May Concern:

Every time I speak to a group of med students I get the same question; “How are we supposed to be able to care for patients with respect and compassion when the system is continually pushing us for results, not quality of time spent?” It’s a good question and one I have come to dislike.

Yes, there is no doubt that our medical system is not set up for doctors to be personal therapists. Yes, they are under great pressure to do the job and do it quickly. I also think we have missed the point.

When it comes to patient care, one option is to sit down and have a heart to heart with great depth and emotion. Another option is to fake it. I don’t mean to fake the emotion, but I do think good patient care does not have to be the result of a bleeding heart. It also doesn’t have to mean canceling all of your afternoon appointments. Let me explain…

I don’t believe that the aspect of patient care that revolves around psychological wellness needs to be in depth or sincere. It can be as rehearsed as all the other doctor-speak taught in med school. It requires observation and practice, two skills that all doctors need no matter what. Here is my formula for “bedside manner”:

Step One: see the patient.

When I am upset about something, I don’t usually announce it. That doesn’t mean it’s not obvious, however! When doctors come and go and pretend as though life was a bunch of honey lollipops, it makes me more upset. I feel like I am invisible. That is a desperate feeling.

Step Two: acknowledge what you see.

If someone were to acknowledge that they recognize my emotional state would calm me down immediately. I would feel recognized and respected as a human being. Sometimes, this might be all I need.

Step Three: ask if there is anything that you, as the doctor, can do to help

Often there won’t be but simply asking is a sign of understanding and compassion (even if you’re faking it).

Step Four: set boundaries

This would be about the time that many patients would take up the rest of your afternoon spilling their guts (that’s because you’ve reached out to them and they trust you enough to let some things off their chest). Let them know you care (even if you don’t) but that you have an obligation to the other patients waiting.

Step Five: mirror

Paraphrase what you heard them say and let them know you understand how they could feel that way (even if you don’t).

Step Six: food for thought

Let them know you will mull over the things they have said and will get back with them if you think of anything helpful (even if you won’t). This is also a good time to give them names of organizations or individuals that specialize in this part of illness work. Giving them therapists or other support resources can allow them to feel they have left with something that might give some relief from the current emotional state.

Will this take longer than a normal visit? Perhaps, but not much.

Will this take an emotional toll on the doctor? Not if they learn this as part of a routine visit and can remain emotionally objective and calm.

Will this help patients feel as though they were being treated with respect and kindness? Most certainly.

Will this increase patient compliance? No doubt.

“Bedside Manner” training is quite in vogue. Medical Schools all around the country are implementing classes to teach doctors how to have more empathy for their patients. I believe this is an unrealistic goal. You can not teach a person how to feel anything. This will vary from personality to personality. With one individual it will vary from day to day. To attempt to reach this goal is to attempt to hit a moving target; it will happen on occasion but will usually be a miss.

When you are teaching scientific minds, wouldn’t it be best to teach a kind of compassion that can be consistent and logical? The truth is, a compassion that is genuine and a compassion that is manufactured are indistinguishable. As a patient, I would welcome either one.

Your med students do not have to graduate as Masters of Sympathy, as I once preached. However, I won’t give up on the fight for them to treat me like a whole being and not just a car that needs a tune up. Give them the skills, please, I beg you.

Thanks so much,

Tiffany

Transplant Should Be Illegal

Journal from June 2002

Elizabeth Kubler-Ross’ stages of grief are well known in our modern society. We all know that denial, anger, sadness, bargaining and acceptance cycle through us as we when we are processing loss. What do those stages look like, though? Would we really know them when we see them in another’s behavior? Better yet, would we be able to recognize them when we, ourselves, are in the middle of one of these emotional cycles? Recently, I have found out that, while the description is simple and obvious, the manifestation can be deceptive.

It was about a month ago that I was sitting in my therapist’s office telling him about my new realization. I had come to the conclusion that transplant, while having its good points, was primarily destructive and cruel. Because of this, my passionate belief was that transplant should be made illegal. After all, it was unnatural and only provided the patients with a limited extension to their lives. I plotted my moves to take on the fall of organ transplantation.

It sounds so silly to me now. No, it sounds sad. Looking back, it’s so obvious that I was in a stage of anger and was looking for a scapegoat to absorb my emotion. What is startling is that I had no idea that this is what was happening. I truly believed I had found my new political calling. I honestly felt a large scale wrong had been done and I needed to find a way to expose the flaws in the system. I spoke passionately and logically. I had plenty of reasons to support my position. I had no idea that I was externalizing a very internal grief.

I turned on the news today and I heard a mother making a passionate plea. Her daughter had fallen overboard off of a cruise ship and died. She was declaring that, while we think that cruises are safe, they really are not. She was calling for stricter laws and protocols around all cruise ships. People were listening to her. Arguments were being made for and against the safety of cruise ships. What I saw, however, was her stage of grief. She was angry about her loss and looking for the scapegoat, just like I was. It was fascinating that people were listening to her arguments and not seeing past them to her pain.

Cruises are actually relatively safe. Transplant should not be illegal. Care must be taken when listening to the diatribes of the grieving. What may seem like a logical argument may just be the manifestation of a grief searching for something to blame.

When we are anticipating the stages of grief in those who have suffered loss, do we really know what we are looking for? When we are in the middle of our own grief pain, do we really know what is driving us? Despite all of our psychological sophistications, I believe that answer is very often "No".

Fight or Surrender?

I see it in so many ways and so many situations around me. The “fight” for survival. When I watch my friend who is in failing health sign up for an invasive experimental surgery, I ask myself if I would put myself through that or if I would simply call it a day? When I see owners drag very sick pets in to our veterinary office time and time again, I wonder what my limits will be for treating my dog when she gets to the end of her life. There is no right answer, only the question.

Example 1:

When you work in a veterinary hospital, death comes wrapped in a unique package. With the possibility of euthanasia, end of life issues are complicated by the opportunity of choice. Owners and doctors collaborate on when they believe the animal has “had enough” and often opt to put them to sleep. Within this opportunity of choice lies a spectrum. On one side you will find the owners who request euthanasia when a pet is not even sick but is “annoying” or “aggressive”. In light of this topic, this side of the scale is not worth much consideration (and those owners' requests are denied!). It is the other side of this spectrum that I find valuable scenarios worth contemplation.

From every objective standpoint, it was clear that Casey was dying. She was a very old dog who hadn’t eaten in at least a week. The owners continually brought her in to address her appetite, with little success. She could barely walk and, at times, didn’t have the energy to lift her head off of the floor. Time’s passing did not seem to calm the panic in her owners' heart and we received many frantic calls with demands for us to see Casey on an emergency basis. Despite the fact that everything Casey was experiencing was perfectly normal for a pet at the end of life, Casey’s owners never considered the option of surrender.

After many visits and many treatments with little to no effectiveness, the doctors recommended an ultrasound. The owners agreed and Casey’s ultrasound was done on a Tuesday afternoon. The test showed that Casey was riddled with cancer. She had tumors in many different areas of her body and one had begun to perforate her bowel. Upon looking at the images, there was no reason to question why Casey had been feeling so badly and, in fact, she was getting along quite well given her physical state.

Because Casey’s owners had been caring for this very sick girl for over a week, and because they were so dedicated to her, I had fully expected them to take her home and spend at least one more day with her. Much to my surprise, as soon as they heard the news about the ultrasound, they chose to euthanize her immediately. It struck me that, before they knew what her insides looked like, they had no intention of slowing the “fight” for her life. Once they had the new information, they surrendered with no hesitation. Casey was just as sick before the ultrasound than she was after and yet something had dramatically changed within her owners.

Casey was put to sleep and went very peacefully. The owners felt good about their decision. I certainly never doubted that they made the right choice. It was, however, an interesting example of the fine line between fight and surrender.

Example 2:

When I was dying, someone close to me made an unusual offer. He saw that I was suffering and he told me that, if I ever got to the point where I couldn’t take it anymore, he would be willing to help by finding someone who would euthanize me. I had never even considered the possibility.

My initial reaction was one of shock and horror. “No thanks!” I cried. Despite my physical discomforts, my internal spiritual world was so exciting I wouldn’t dare cut it short. I would some day reach the end of this life chapter and I couldn’t wait to see how it would turn out.

Later, when I was able to think about his proposal, I could see that he had made a bold and brave move out of love for me. I imagine that he fears that part of life, the pain and suffering that comes with dying. Because he loved me, he wanted to offer me what he would want someone to offer him: a way out. It took guts for him to offer me something that many people would want but would never dare to vocalize. He offered me the chance to surrender. I thank him for his compassion.

The Verdict:

When I watch some people clinging to threads of possibility for one more day on earth, I wish they could just surrender and let go of their attachment to living. Sometimes the attachment is more painful than the dying.

At the same time, the only thing I know for sure is that you can never know what you will do until you are actually in the situation. I had proclaimed on more than one occasion that I would never have another transplant. The sicker I got, the weaker this conviction became until I had completely changed my mind. If I had simply “surrendered” in 2003, I would have never gotten a second transplant and I would have missed out on so many wonderful things. I am glad that I kept fighting.

We all have our notions of when it is time to fight and when it is time to wave the white flag. In our culture, there is a strong emphasis put on the value of fighting. In fact, when someone dies, we might say that they “lost their battle” with their disease. I don’t know where that fine line between battle and surrender falls, but I do know that there is a time when giving in grants the most peace. Please don’t ever eulogize that I “lost my battle” with anything! Instead, appreciate that I knew when it was time to stop fighting and let my journey draw to a close.

The question of fight or surrender will always remain just that, a question. Simply knowing that there is an option for both, however, is invaluable.

Worry

Journal from August 25, 2000

I woke up this morning with my lower back hurting and an aching down my legs. It’s been going on a few days now. Of course, I’m worried. What if I’m starting to go into kidney failure?

Later today, I noticed I was spontaneously sighing a lot. What does that mean? Is that a sign of rejection? Am I losing lung function?

Also, I am tired of being tired. Am I ever going to feel energetic? Will my life always be like walking through a swamp just to get from A to B? Is my fatigue normal? Is it all in my head? Is it something I could overcome if I pushed myself harder? Is there something wrong with me?

I am weary of the internal evaluation I am constantly doing regarding my body. I want to be free to think of other things. I want to live a life in which each tingle, twinge and pang is not a cause for concern and anxiety. What must it be like to have a body that functions without all of these warning bells? I hope some day I will find out…

Fear

Journal April 7^th, 2004

(Roughly one week after surgery)

Well, the day that we were never sure would come did, in fact, arrive. I went through a second transplant a few days ago! I have so much I am thinking and feeling about that but I will have to wait for another time to write it all down.

Today, I want to get down on paper the experience I had immediately before the surgery…before I forget! Amazingly, I have been through the pre-transplant process 4 times (two transplants and two “no-go’s”) so none of the procedures were much of a surprise. What was different this time, however, was the fear. I was much sicker than before the last transplant and traveling into mostly unchartered waters by doing this major surgery a second time. My mother was sobbing. She was nearly convinced I wouldn’t make it through. From the time I stepped foot in the ER, I was fighting the pit in my stomach. I tried to be positive but I couldn’t deny the fact that this may be the end of me.

When I had gone through all of the many steps it takes to make it to the holding area (the last step before OR), my fear continued to steadily increase. When we found out the donor lungs were good, I said my goodbyes to my family and was wheeled back to the hallway in front of the OR. The person wheeling me left me alone on my gurney while they went to fetch something. This was the first time since I had gotten the call that there may be a donor that I had been completely alone. In this private moment, my fear went through the roof. I was on the verge of panic.

I began talking to myself and trying to soothe my emotions with investigation. Why was I so nervous? What was the root of this terror? It occurred to me that I was unconsciously reading a secret cosmic message out of my fear. There was a part of me that believed, because I was in fear, that I was making the wrong decision. I was translating my fear as a warning to not proceed with this operation.

As quickly as I realized this, I heard a calming voice in my mind. The voice said “Just because you fear it does not make it wrong”. As the sentence repeated, I was able to let go of the part of my anxiety that was related to the belief that fear = run.

When the attendant returned to take me into the operating room, I was not without fear. Certainly, I was no longer on the verge of panic, but I still felt sick with worry. All I could do at that point was allow my fear, observe it and remind myself that it was not a fortune telling device. I went under anesthesia with fear pulsing through me and the deepest knowledge that my fate was up to someone much greater than I, or my emotions. It was the truest moment of “Give it to God” I have ever known.

Competitive Suffering

I have seen in myself and others who live with serious illness the tendency to compare and judge the severity of another’s maladies. Strangely, it can be almost a sense of superiority that underlies the need to pronounce “My boo boo is bigger than your boo boo” and therefore write someone off as a “baby” or insensitive to the people with real problems.

Conversely, I have seen many people be afraid to share their difficulties with someone like me because “they have no right to complain when they see what other people are dealing with”. The question I pose: Isn’t there enough compassion to go around?

Example 1:

I am extremely lucky to have wonderful friends who have been with me through thick and thin. They have seen me through dark times of terrible physical and emotional struggles. They have been at my bedside when I was close to death and when I was recovering from transplant surgery. They have seen it all.

I have one friend in particular who, though mostly healthy, has had some of her own health challenges. She has dealt with kidney problems, inexplicable stomach pains and Lyme’s Disease. In addition, she has had some emotionally bumpy times, most notably when her heart was breaking over the end of a 7 year relationship.

Despite the “validity” of her hardships, she is often very reluctant to share them with me. She maintains the idea that I have had enough of my own troubles and relaying hers would only be a burden to me. I have repeatedly assured her that I am her friend and I want to be there for her, the same way she has been there for me. Nonetheless, she can’t seem to shake the perception that my problems are bigger than hers and she should just keep them to herself. This makes me very sad.

Example 2:

After my first transplant, the steroids I was taking beat up my pancreas so much that I became diabetic. This was a whole new frontier for me and I had a few weeks of physical distress while I was learning how to care for this new disease.

I have (had) another friend who is the opposite of the friend I described in the above example. She is usually in crisis mode, more often emotionally than physically. One evening, during this difficult time, she came over to my house unexpectedly. I was having terrible stomach pains and was really unable to talk much. I told her as much and she took that as a cue to talk at me about all of her woes. I think it was about her mother, again. I told her that I was in pain and I started to cry. This new diagnosis had hit me hard and I was worried. She stared at me blankly, let some silent time pass and then resumed her story about her mother. I eventually had to ask her to leave.

This kind of exchange happened many more times. When I was dying the second time, I had come clean and told her that I thought she was a fair-weather friend. She seemed to disappear during my hard times and come around for advice and comfort when I was feeling better. She apologized and said she understood. We gave our friendship another try.

A few weeks later, I had my second transplant. When I was at home recovering the phone rang. I didn’t answer it because I wasn’t up to talking to anyone. The message she left on my answering machine was one of pure panic and horror. It sat bolt upright and made my way to the phone as soon as possible. Right before I answered it, I heard what she said was causing her so much distress: her hairdresser had colored her hair too dark and she wanted to know what she could do to fix it. That was the last straw for me. I decided I didn’t need that kind of inflated hysteria around me anymore and I cut her out of my life.

Example 3:

Before transplant, our center requires patients to attend a bi-monthly support group. There we learned about what we would be facing both in the surgery and the recovery. Part of the meeting was to let newly transplanted people tell their stories. Things like, “How long were you on the vent?” And “How many days were you in the hospital?” were high priority questions. We were all, or so I suspect, inwardly comparing ourselves to the people who had gone before us.

It felt like a lifeline when the patients spoke as if transplant was ‘a piece of cake’. Fear pulsed through me when people relayed stories of great difficulty and pain. When people died, it was almost too much to consider.

The obvious truth, however, is that none of those people were me. After all was said and done, none of their experiences matched mine. While they provided me with an anecdotal encyclopedia of possibilities, comparisons were futile and meaningless. When you are embarking on a journey that is so strange and mysterious, it is only human nature to want to apply others' outcomes to your future. Finding a way to take in the story without processing it as your own is very difficult. Difficult, yes, but certainly something to strive for and keep in mind…Compare Not!

The Verdict:

When you have a serious or chronic illness, it can be easy to discount the people around you. To hear someone complain because they have the common cold can seem like an insult. After all, theirs will go away, right? How dare they seek sympathy for something so minor and temporary. If only my greatest problem was a cold!

I must confess, I have had these thoughts and feelings in my life. I have had these feelings and then I got a cold. Wow! Having a cold is miserable! Does the pain I suffer from a broken leg counteract the suffering that comes from a paper cut so that it somehow ceases to be suffering? No. A broken leg is painful and so is a paper cut. They co-exist and are both forms of physical pain. Because one is more severe than the other does not cancel out the latter's existence. For me to discount another’s suffering based on a comparison to my own is simply a result of self-pity. Ideally, I can have compassion for them as well as for myself.

With that said, there is a sensitivity that is appreciated when one is engaging someone in physical or emotional turmoil. When I am on a ventilator, please respect my desire for light conversation! When I am doubled over in pain, please acknowledge my need for peace. When I am dying, please respect my boundaries and limits of energy.

To answer the question I posed above: Yes, there is plenty of compassion to go around. Patients may need to make a conscious effort to give compassion to someone other than themselves. Caregivers may need to make a conscious effort to give themselves permission to acknowledge their own suffering as valid. We all may need to work on being sensitive to each other’s personal struggle. And every once in a while, we may need to part ways because we don’t have enough energy to give to each other’s wounds. There is compassion in all of these things.

Healing V Curing

What a wonderful experience today's talk was! I always always always love talking to med students, that's nothing new. What was unique, however, were the three doctors I was privileged to be on the panel with and the doctor who ran the show.
Each doctor had their own stories about healing and curing, some of them personal and some of them stories about patients they had known in the past. They all had one theme in common and that was that they knew the difference between treating the disease and caring for the person. I was inspired and impressed. If only all doctors could be so balanced. I sincerely hope that the med students took a lot of notes today...

Slightly repetitive but...

I'm giving another talk tomorrow. Yea! This talk is to med students and the topic is Healing Vs. Curing. Some of the content has already seen the light of day on the blog but, nonetheless, it's what I wrote out today so here it is! :)

My name is Tiffany and I am a Professional…patient.

I was born with Cystic Fibrosis.

I am 33 years old and I have planned my own funeral…twice.

I have sat down with the people that I love and told them that I only have 6 months to live.

I have held my mother’s hand as she cried and said she didn’t know how she would live without me.

I have had more days in the hospital than I could possibly ever recall.

I have scars all over my arms from the countless IVs, scars on my torso from chest tubes and scars from the clamshell incisions that were made when I had my double lung transplants…one in 2000 and another one in 2004.

Before my first transplant, my lung function was 18% of capacity. Before my second transplant, my lung function was 10% of capacity.

Translated, that means I got severely out of breath brushing my teeth.

I have lived with chronic illness, acute illness, sudden onset illness and terminal illness.

I know what it is to be a patient and I know what it is to be more than just a patient.

There was a time when my illness was my identity and my medical treatments were my life.

I looked to doctors and nurses for all of my answers…until I learned that they didn’t have a lot of what I needed to know.

There is a difference between healing and curing. I found out that healing was my job and medicating was your job.

Curing is when the body has rid itself of illness and disease. It is a physical state of wellness. Curing is modern medicine’s responsibility and can be done with or without the assistance of the patient.

Healing can be done no matter what the outcome of the illness- healing is achieved from within and may still have a result of physical death. Healing is an emotional/spiritual state of wellness. This is the patient’s responsibility and can be done with or without assistance from doctors, nurses etc.

It became my job to strengthen myself from within, despite the pain I was enduring. Happiness comes from within, suffering comes from within.

I began to ask questions, do research and take diligent notes on my medical history. I became an empowered self advocate. I explored many alternative therapies, despite my doctor’s objections. Some helped, some didn’t.

I knew my options, knew my medications and treatments and made sure that those caring for me didn’t make any major mistakes.

So why I am I telling you all of this? It is not to brag. It is to confess…despite my ability for self care, at the end of the day, you and I have to work together, and you still hold a lot of power.

When I was 21, I had a doctor that was treating me for CF. I was in college, but struggling to stay in as my health was deteriorating.

As strange as it is, nobody had ever mentioned transplant to me.

For all I knew, this was to be my life, lung infections, IV therapy and feeling the way I had always felt.

This doctor made comments to me that I will never forget. He told me my health was “pathetic” and that he often sees CF women hit 21 and “go down hill”. He casually told me that I needed a transplant and it was as though a bucket of cold water had just been thrown in my face.

Looking back, I see that he knew things that I didn’t know, that this was a trend and that the changes in my health were “normal”. Looking back, I wonder, perhaps he was actually a well-informed doctor who knew what he was doing.

I also see that “transplant” is just another word in the vocabulary of a CF doctor and it wasn’t his intention to terrify me. But he did.

I imagine that he didn’t understand the pain and fear that his words filled me with.

I also know that, had he thought about my position, he could have helped me understand that my current health was expected, a normal course for someone like me, and given me options to think about.

Looking back I see that he could have made me feel good about transplant and my hope for the future. Instead I fired him and wouldn’t let anyone mention the word “transplant” again for an entire year.

Maybe he was uncomfortable with giving me bad news. Maybe he had forgotten that I was a person and not just a grouping of cells and genetics.

Regardless, he could have done his job differently and changed the course of my life.

In my illness career, there have been countless time I have grieved for myself. The times that stick out the most are the times when I was given a terminal diagnosis.

It felt as though I had been hit with a mac truck and all the wind was knocked out of me.

I was sad that I was dying, sad that I wouldn’t be able to do and become all that I had hoped to be in this life.

I was confused. Dying feels much like being very sick, I wasn’t sure how to know the difference!

But mostly, I was adrift: what do I do now? How do I live now?

I asked my transplant coordinator this question and her answer was a sharp: “well, you’re not on oxygen yet!”

I still don’t know what that has to do with anything, except to make me feel as though I had no right to complain.

I was surprised to find that none of the medical professionals I asked had much of an answer to that question.

I found the answers on my own.

I was amazed to find that as my outer body weakened, my inner self strengthened and the world seemed a much more beautiful place.

Eventually, I had to quit working.

As my body became so sick that there was little I could physically do, I began to look inward and created “projects” for myself; like becoming a more compassionate person or learning more about things I had never thought much about like painting.

I found that no matter how sick I was, I still deeply desired to have purpose in my life and that purpose is what allowed me to get out of bed every morning trailing yards of Oxygen tubing behind me.

Despite my experience and willingness to explore the boundaries of life and death, the fact never changed that I looked to my caregivers for guidance.

From where I sat, my team was the one with experience in Chronic Rejection. My team was the one with the experience in the whole dying thing. I was just one person struggling through on my first time around.

I have asserted to doctors that since they have the practice in these things, the illness and the dying, that they should be doling out more pearls of wisdom. The response is that they really don’t know what a patient is going through and therefore doesn’t have many pearls to distribute.

It is my belief that a doctor or a nurse has great potential to facilitate the possibility of healing through clear communication, setting proper expectations and giving the patient a summary of what they are likely to face. I refuse to believe that this is outside the bounds of possibility.

For example, if I could go back in time and tell Tiffany Who Has Just Been Diagnosed With Chronic Rejection And Has No Hope Of A Second Lung Transplant where to go from here, I would tell her a few things.

First, that she should enjoy the health she has now as it will decline. I would tell her to think about what is meaningful to her and highlight those parts of her life. If her job is important, keep that job until she can no longer physically do it. If her family is important, make time for them and focus on creating quality time with them as much as possible. If there is something “she always wanted to do”, now would be the time to do it, while her body is still able to get around.

I would tell her that she has some grieving to do, sadness and anger will be visiting. She will need to grieve the loss of her future and experience the pain of saying goodbye to those she loves so dearly.

I would tell her that after the grieving is done, there is a possibility for great inner peace and acceptance of what life has offered.

I would offer her information on programs, counselors and other people that might be helpful to her on this journey. I would tell her that I would answer any question she had about the physical process of her illness and death whenever she was ready or needed to hear it. I would promise to be honest with her at every turn, if that is what she wanted.

None of those things are terribly deep or complicated. None are too specific and at risk of misleading her into false fears or hopes. All of those things are simple truths that anyone who spends time with the sick would observe over and over.

This is where being a doctor or nurse becomes very tricky. If you, as a healthcare provider, are not willing or interested in exploring the emotional sides of illness, you will be unprepared to guide your patients in a time of need. If you are not willing to face your own mortality, you will be uncomfortable dealing with those who are.

This is a tall order. This requires much more from a person than going to school and getting a degree. The truth is, if you would like to be a doctor who helps heal as well as well as attempts to cure, this is what is required.

Finally, I can not go without mentioning, as this is very close to my heart, the dangers of confusing healing with curing and therefore judging a patient’s dedication to getting well by the physical results. In some of our “power of positive thinking” perspectives, there is a tendency to put responsibility on a patient for their success or failure, success being living and death being failure. I can assure you, this is a responsibility too awesome to bear.

Death is not a failure and it is most often not a choice. I have known many that have died before me that were not in any way lacking a positive attitude or a will to fight. I could never call myself a survivor because that would make them a failure. They were anything but.

If it were not for my second transplant, I would have died. In the same way, my spirit was so strong, I could never call myself a failure and would have been crushed if someone had. Please be careful when you make assumptions about who is “working hard” and who is not. Appearances are not always what they seem.

I wish you all the best in your careers. In my journeys, I have found that being a doctor is an awesome responsibility. It is my experience that the good ones never are so bold as to think that they are up to the task.

Getting there...

I continue to grow more and more excited about this book as I get closer each day to the finish line. I have been able to make some headway in how to organize it and that is very satisfying. I still have plenty to write but most of it is journals and that is easier for me to "knock out". My deadline has always been July 17th and I still feel very confident that it will be complete by that day. From there, I will sending manuscripts to any agent or publishing house that might be interested in this type of book. At that point, I will be taking off the bulk of the blogs...you will simply have to wait and buy the book! :)
Currently, the front-runner for a tittle is:
"Still Not Dead! (insert picture of me happily shopping with oxygen tank) Lessons, Journals and Letters from My Life as a Patient"

What do you think?
Thanks again to all of you who check in on me and write such helpful and supportive comments! You have made such a difference in this process...You know who you are! :)

Top 10 Opportunities of Illness

1. Getting the chance to say goodbye

2. Learning to stand up for what you need, even in the face of “authority”

3. Learning compassion for yourself and others

4. Discovering how resilient you can be

5. Learning how to be In the Moment

6. Getting the chance to learn who you really are, without all the frills

7. The chance to resolve differences with those you love

8. Discovering what you really think about God and where we go next

9. Experiencing overwhelming love and support from unexpected people

10. Truly appreciating, perhaps for the first time, all the sights, smells, tastes and feelings that earth has to offer

Splitting the Rails

Journal Entry from December 20^th, 2004

When the call came that I would be given a chance for a second lung transplant, my reaction was not one that most people would expect. I was in a state of pure distress. I had been planning my death for months and months. I had said goodbye to so many of the people I loved. I was ready, no excited, for the day I would leave here and see what waits for us on the other side. This news that I may have a chance at life threw a real wrench in the works.

To make it more complicated, there was absolutely no way to know if I would actually make it to the transplant. This meant that what had gone from a definite, I would die in the coming months, had gone to a complete unknown. I might get the surgery and live or I might die before any organs became available. It was about a 50/50 chance. This put me in a very uncomfortable position and I felt lost. I didn’t know what to hope for anymore. I didn’t know how to pray. I didn’t know if I should continue to eat what I wanted (one of the best parts about dying!) or go back to a healthier diet. I didn’t know if I should stop buying the “skinny sick” clothes and wait for the day when I had put on a few pounds. My concerns ranged from serious spiritual dilemmas to the mundane. I was confused. I called this feeling “splitting the rails”.

I know many people face this in many different ways. When people have cancer and begin chemo, there is no way to know if it will work and they will be healthy again or if it won’t and the cancer will take over. When people prepare for major surgeries, they know they have a chance of the body being fixed or the body collapsing under the weight of such extensive measures. In so many different ways modern medicine brings us into the dilemma of the unknown future.

Ultimately, finding peace with this situation was the hardest thing I’ve ever had to do. I actually found myself wishing that I had never had the opportunity for another transplant. Planning my death was so much easier than planning for life and death simultaneously. But, in the end, that is what I had to do. I had made my peace with the end and now I had to make my peace with a new beginning. The only way to this was to love both of my options equally.

I had to plan for both possibilities equally, as well. I continued to plan my funeral and say my last words. At the same time, I dreamed about all the things I would do once I was well. The image I used was that I was packing two suitcases for two destinations. One was in the cold North East and one was in sunny California. I had no idea where my bags would end up, I wouldn’t know until I was boarding the plane, in fact. All I knew was they were both possible and they both required different wardrobes. The tricky part was not being attached to either destination showing up in my itinerary.

It took work and many tears but I finally found myself in a place where I was thrilled with both options. I had both bags packed and waited for my tickets to arrive. This time, obviously, my ticket was for another trip to the OR. Looking back, I can see that this was the greatest lesson in balance I could have ever received.

Earth is Hard

Journal Entry from August 17, 1999

I went to the hospital today for a clinic visit. On my way into the front doors, I spotted a woman in the corner crying and being consoled by an older man, perhaps her father.

In the lobby I saw a child in a wheelchair who was unable to control his body and looked as though he most likely could not speak. Next to him stood his mother (I assumed) and she looked absolutely exhausted.

As I made my way to the escalator, I saw a young woman who seemed to be mentally handicapped and she was screaming and flailing her arms. People that I assumed were her family surrounded her and, with embarrassed faces, tried to control her tantrum.

At the top of the escalator I heard a man moaning and glanced over to see him on a gurney in the middle of the hallway. He was hooked up to an IV, he was unattended and looked to be in pain.

Walking into the clinic, I passed by two women and overheard one say “The next step is Chemotherapy…after that, well, I just don’t know”.

This was not an unusual day. In fact, I have seen worse on plenty of occasions. (I’ll never forget the mother I saw talking on the Pediatric Unit’s pay phone sobbing and relaying the very recent death of her daughter. That one still haunts me many years later.) The sights and sounds of the hospital are difficult to digest if you are paying attention. It’s possible to barrel through and not notice the lives around you, but I have made a conscious choice not to. I try to drink in the pain, the suffering and the stories that are all around when you walk through the halls of any hospital, in any city, in any state.

I am not alone in my suffering. I am not the one that suffers the most. There is no shortage of people in pain.

There is one phrase that runs through my head every time I journey through those hallways. Earth is hard. There is no doubt about it.