A Letter to My Beloved Transplant Coordinator

Dear Vicky,

There was a time shortly after my diagnosis of chronic rejection that I was completely positive that I would never go through another lung transplant. I had my shot at life, I was going to die and that was okay. I think I had been dealing with the disease for about a year when it suddenly hit me that I wanted to do anything I could to try and stay on this planet a little longer. I still had things I wanted to do! That’s when I decided to make an appointment to talk to the team about getting a second transplant.

I did just that. I met with the head surgeon and he explained the elevated risks of a second go-round. After that I met with your predecessor, Betty. She told me horror stories about second transplants in general and how I should not even bother. She told me it was a bad idea and that I should put it out of my mind. I went home and prepared to die without hope of another life-saving surgery.

Months later Betty quit and you came on board. I was home when you called me to introduce yourself but I didn’t answer the phone. (By that point I didn’t really see what more the team could offer me and I avoided contact.) I listened to your voice over the answering machine and had very little interest in getting to know this new transplant coordinator.

When I came in for my next appointment at the clinic you were there. I was very angry because I didn’t understand why I needed to drag myself, my oxygen tanks and all my tubing over to the hospital when I was dying and there was nothing more that could be done. From my position, getting there was difficult, being there was pointless and getting home was exhausting. I resented those visits and was cantankerous towards all that entered my little exam room. You were no exception.

That is what is so mysterious to me, even to this day. How did you do it? How did you walk into the room, encounter my snarling and spitting and see right past it? How did you look inside me and see my pain, hurt and fear? Could you somehow see how desperately I wanted to live? What made you decide to fight for me and help me get on the list for a second transplant?

I have no answers to these questions. What I know is that you moved a few mountains out of the way and cleared the path for me to pursue my dream of living another day. It is because of you and your instincts to help me that I am here, two new lungs and years later. It is because of you that I have been able to fall in love with the man of my dreams. It is because of you that I am able to write this book. It is because of you that I am able to breath in spring, fall, winter and summer. It is because of you that I look forward to another tomorrow. How do I properly express gratitude for the monumental role you have played in my entire existence? There simply is no way.

I am not alone in this dilemma. How many people can say these same words to you? How does that feel, to have made such a dramatic impact on so many lives?

Vicky, all that I am able to offer you is the hope and prayer that God will see all that you have done and reward you beyond all expectation. May you be blessed a thousand fold in this life and any that follow. May all the good you have done be done to you. May all the compassion you have shown be given to you when you need it most. My passionate prayer is that your own joy will be proportional to the love you have given so many patients. I offer this prayer with sincerity and humility.

Thank you so much for moving here and taking Betty’s place. No more post-it notes!

With All My Breath,

Tiffany

Getting Your PhD in Patientology

I’m sorry to be the one to break the news but: gone are the days when Doctors Know All and we are at their mercy. When it comes to your personal care, it is your job to gather all the information you can on the consequences of different procedures, your medications and your own body. That is not a suggestion, it is a necessity, and could save your life.

Example 1:

There was a time when I had a transplant coordinator named Betty that left much to be desired. She primarily organized her patient’s care with post-it notes and always chose the path that required the least amount of work for her.

I was on a downward spiral after recently being diagnosed with a serious problem; chronic rejection. My lung function was dropping almost daily and the doctors were struggling to get me stabilized. In addition, I was having persistent fevers that were concerning because if my body’s immune response were too high, I could also go into another form of rejection called acute rejection. I went to clinic to address the fevers and was seen by a doctor that hadn’t been on the team long and, in the end, didn’t stay long either. His analysis was that the fevers were being caused by my chronic sinus infections and his solution was sinus surgery.

Based on his conclusion, the wheels began turning to set me up for the surgery. I say the ENT doctor and he felt it would be a good idea, based on my history, to do the surgery but not a necessity. We went forward and made the surgery appointment.

The day before I was to go in, I had to go into the hospital for a battery of pre-surgery tests. I had one question on my mind that had never been answered: If my lung function was continuing to drop, wouldn’t being intibated and going under anesthesia make that problem worse? I knew that intibation and anesthesia was difficult to recover from when one was having lung issues.

The tests I had to have done took all day and were at a variety of different places throughout the hospital. At each stop I asked the caregiver when I would be able to see a doctor and ask them my question. The answer seemed to always be “later”. Finally, at nearly 5pm, I was at the final stop. I asked the nurse my question and for the first time that day her response was one of concern. She felt I had a valid question and encouraged me to contact my transplant coordinator. She gave me a phone and I called. Betty answered, to my surprise, and I told her my thoughts. She exclaimed that she had a note on her desk to call me and that she had meant to tell me that I shouldn’t have the sinus surgery until my lung function had stabilized. The surgery was canceled and I went home. I was only hours away from going under anesthesia.

What would have happened if I didn’t know that information and pushed for the answer? Luckily, we will never know but my fevers resolved and I never did have the sinus surgery.

Example 2:

After transplant, there are many, many medications a patient has to take. Some of them have side effects and some of them are counter-indicated. The major immunosuppressant can not be taken with any ibuprofen product because the two together can cause kidney failure. This is something they try to teach you when you are learning your medications but a friend of mine missed that lesson.

After his surgery, he was having back pain and began to take Aleve to help. A few days later, his lower back began to hurt and the pain extended all the way down the back of his thighs. Fortunately, he mentioned this at a clinic visit and it was quickly discovered that he was in early stage renal failure. They were able to treat him and reverse the effects of the ibuprofen interaction, but he was shaken.

This was not the fault of the doctors or nurses. My friend failed to take in crucial information that was provided to him. It can be easy to become complacent with your care and not think about all the details. That approach can clearly lead to a world of trouble.

Example 3:

I like to think of myself as a unique individual, but when it comes to my body that isn’t really a compliment. I can react to things very differently than “most people”. Some of that has to do with my emotional history, some has to do with my varying pain tolerance and some has to do with my personal body chemistry. Only I can know how I will handle certain medications and procedures and I have to somehow find ways to communicate these idiosyncrasies to those caring for me.

At one point, I had a central line called a Port-a-Cath. This was a wonderful device that allowed me to get IV medications with minimal pain and was not invasive. After my first transplant, this catheter was taken out as it posed a risk of infection. From that point on, I required a PIC line whenever I needed IV medications. This catheter is placed above the elbow and is fed in across the chest just stopping short before it reaches your heart. For most people, apparently, this is “no big deal”. For me it is incredibly painful. Between the existing scar tissue from past blood draws and IV catheters and the fact that I am very small, this procedure is at the top of my “most hated” list.

When it comes to getting a PIC line placed, I have become a Pavlovian dog. As soon as they wheel me into the room where it is done I start to feel cold, tremble and cry uncontrollably. This is not a welcoming site to those involved in doing the procedure and makes it all the more traumatic for me. At times I have even had this reaction when I am simply filling out the paperwork.

There have been doctors that gave me PIC lines that felt compassion for me. There have been doctors that have told me I shouldn’t be so upset. There have been doctors that did it very well and it turned out to be “not so bad”. There were doctors that did it very forcefully and I was in terrible pain for days afterwards. No matter what the circumstances, my reaction remains the same. I am scarred for life when it comes to PIC lines.

So what do I do? It is my job to convince them of the severity of my problem and make sure that I am provided with the proper pre-medication. I need to be very sedated before I go in that room. It can take time to convince someone that I need this pre-medication as this is not a normal request. Eventually, I may have to declare that I will not do it without the sedation. If that doesn’t work, it is then necessary to involve my transplant doctors in the debate. Usually, it doesn’t come to that but, regardless, I will not back down from this demand. It’s my body and I know it better than anyone else. End of story.

The Verdict:

Everyone knows that “Knowledge is Power”. When it comes to healthcare, it can enhance or even save your life. The more you can learn about your illness and the treatments, the better able you will be to make informed decisions and ask the right questions. Information can be gathered from other patients, the internet, reading books and asking lots and lots of questions to the medical professionals around you. Take control, knowledge is the first key in being an effective Patient Advocate.

Finding the Dragon Shrinker

One of the greatest challenges of being ill is finding someone to talk to about what you are truly experiencing. When I was very sick, I was surrounded by people who loved me but I had an overwhelming feeling that I couldn’t be completely honest with them about my deepest thoughts and emotions. My feelings were complicated and heavy; I felt too heavy to be confessed to those I loved. I simply didn’t want them to carry my burdens.

This is why I sought out a good therapist. I needed to talk to someone that could handle my situation and who better than a professional? What I eventually found was that a good therapist can save your life and a bad one can make it worse.

Experience 1:

I was only 16 but I wanted to talk to someone about having CF. I needed to process my thoughts of dying and the feelings of being different. My parents got me a shrink and I began to see him once a week.

Despite my deep desire to talk, I was an ornery teenager and was unwilling to open myself up to just anyone. This therapist had the Stare-at-the-Patient-Until-They-Talk approach and I had the Stare-at-the-Therapist-Until-He-Impresses-Me approach. We were not a good team. We spent many sessions with only a greeting and farewell passed between us.

At some point, he made the bold move of asking me a question. He wanted to know how I felt about having this disease. I believe my answer was along the lines of “It’s fine”. He went on to praise me for how well I handled it (based on that answer) and told me I was a model patient. I thought he was a complete idiot but, at the time, I always accepted any compliments I could get. I stopped going to see him shortly after that session.

Experience 2:

I was in my early 20’s and getting ready to go off to an acting conservatory. My illness was progressing, I was worried about my mortality and, once again, I felt the need to process my feelings with someone outside my inner circle. My doctor recommended a therapist that specialized in treating people with illness. This thrilled me and I began to see her on a regular basis. At first I liked her. She made me cry about stuff which I took as a good sign. After seeing her for over a year, however, I started noticing that some of her advice was way off the mark. I became weary of what she told me and lost some trust in her perspective.

During one of our sessions I was talking about my life, I think I was crying again, and she began to interrupt me to tell me stories from her life. It was very jarring and I tried to see how they related. Simply put, they didn’t relate. She was a person who had suffered sexual abuse as a child and one day she decided she wanted me to know it. It was almost as if she had gotten sick of listening to me and decided she wanted me to listen to her for a change. I listened to her for the remainder of the hour and left feeling like I never had the right to complain about anything ever again. Clearly, my life hadn’t been as bad as hers. I felt very uncomfortable when I thought about going back again. I didn’t know how to handle it so I canceled my next appointment with a promise to reschedule. I never called her again.

Experience 3:

When I was diagnosed with Chronic Rejection after my first transplant I was confused, scared and devastated. I couldn’t believe I had been given this tremendous gift and the ride was over already. Perhaps more than any other time in my life, I needed to talk to someone.

A friend of a friend recommended me to Glen and I hoped he could help me work through some of my pain. Glen did much more than that. He became my rock, my teacher and my sanity. I have countless stories that I could tell about a time when Glen took me from a very dark place and helped me transform my perspective and my life. I couldn’t begin to describe how valuable he has been to me over the years. Because one story is no less valuable than the next, I will simply tell you the story of our first meeting that I still think about to this day.

It was difficult to even tell my story to this stranger without tears. I was going through so much and needed guidance so desperately. I told Glen of my fears and my fear of my fears. He listened and commented as I spoke. When I had come to a resting point, he pulled a book off of his shelf. I don’t remember what it was called but it was a paperback children’s book with an orange dragon on the cover. Glen presented the book to me as if I were in a group of kindergarten children and slowly read and turned the pages. At first this made me feel silly and uncomfortable but, like a kindergartener, I quickly became immersed in the book and forgot myself.

Glen told me the story of a young boy who found a little orange dragon and wanted to keep him as a pet. The little boy would show his pet to his Mom and she would respond with “There are no such thing as dragons”. For some reason, the dragon grew bigger and bigger. The boy showed the pet to his father and was again met with the response; “There are no such thing as dragons”. Still, the dragon grew bigger. One day the father came home from work to find that the house was bursting open as the dragon had grown so large that his head was poking through the roof and his limbs were hanging out of the windows. The father was very upset and asked the boy where this dragon came from. The boy told him that it had been in the house all along. The dragon then began to shrink and soon was, once again, the size of a small dog. As the dragon, the boy, the mother and the father cuddled on the sofa, the mother wondered why the dragon had gotten so large. The boy answered; “I don’t know. I suppose he just wanted to be acknowledged”.

I quickly found the value of this story as Glen and I began tackling my own dragons. I was astounded at how quickly they shrunk when I had the strength to look at them and truly acknowledge their existence. To this day, Glen and I face my dragons head on and, after the initial fear of their power, marvel at how quickly they become small.

I believe so strongly in the importance of Glen’s role in my life that I am unsure if I would still be here today without his guidance through the dragons of terminal illness and recovery.

The Verdict:

Finding a good therapist is not easy. Just because someone has a degree does not make them worthy of being a key player in the complexities of your life. Shop for the right one and don’t be afraid to move on if something doesn’t feel right. I wish you all the luck in finding the right professional to help you shrink your dragons, whatever they may be.

3 Year Lung Anniversary

It's a busy day at work so just one post today! I recently celebrated my 3 year lung anniversary (for this set, 7 years if you count both sets) and below is the letter I hope that my donor family has received. I wish them peace and healing and send them unspeakable gratitude.

Dearest Donor Family,

As March 28^th approaches, it is both a happy and sad day for me and my family. It is a happy day because it marks the anniversary of the day my life was saved. It is a sad day because it also marks the anniversary of the day you lost someone you love.

I wanted to write you this letter because I need you to know how much your gift means to me. The truth is, that is something I could never fully explain, even if I wrote 1,000 letters.

I have lived with illness from the time I was born. At 6 months of age, I was diagnosed with Cystic Fibrosis, a genetic illness that primarily affected my lungs.

After a sickly childhood, I began my acquaintance with in-patient hospital care at the age of 12. In spite of extensive ongoing treatments and procedures, (at home and in various hospitals), I graduated High School and began college. After three years, however, my health deteriorated to such a degree that I had to drop out. It was then that the doctors at UNC Memorial Hospital placed me on the list for a double lung transplant. Waiting a total of five long and difficult years, during which, my lung function dropped to 18% capacity, I received my first set of donor lungs in April of 2000. I celebrated my 27^th birthday a few months later.

The following year, I returned to school but shortly before finishing was diagnosed with Chronic Rejection. This was a devastating emotional and physical blow.

In 2004, I grew gravely ill, even more so than before my first transplant. My lung function was down to 10%of capacity and I was told I only had months to live. I was devastated that I was going to die so young (I was only 30) without meeting so many of my dreams and life goals.

Due to a series of wonderful and unusual events, I was able to have a rarely performed second lung transplant just in the nick of time. Amazingly, it has been more successful than the first!

It is not lost on me that I am extraordinarily lucky. My life has been spared twice by the compassion and generosity of two different families. There is not a day that passes that I take this gift for granted. In fact, it is this generosity that motivates me to strive to make a difference in the world. I feel I owe it to myself, my family, my donor’s family and my donors to make every moment count.

Today, I am happier and healthier than I ever thought possible. I am married to the man of my dreams. I have a passion for public speaking and writing and I am channeling those talks and writings around helping caregivers and patients with chronic or terminal illness. For the first time in my life I am able to live and work as a normal adult. I can breathe beautifully and am sure to run and play as often as possible. Every breathe I take is a breathe of gratitude. I am living a wonderful life.

I am carrying out all the dreams that I had for myself when I was so sick I could barely walk across the room. I do all of this in honor of your loved one, my donor.

I am so sorry for your loss. I know that nothing I can do can make up for that pain. I can only hope that you will feel that the lungs you donated are being used with love and respect and eternal gratitude.

Sincerely,

Tiffany

Pick a Pic, Please!

Which picture do you like better? The one on the left or this one? The third option is: no pic at all! Please vote in the comment section below! Thanks!!

Still Body, Forward Mind

When you become ill, the things that once made up your life begin to fall away. The exercise routines, the jobs, the hobbies…they all pay the price of the body’s inability to keep moving. Usually, this causes a crisis of self that I call “The Illness Identity Crisis”. “Who am I if I am not a doctor?” “a triathelete?” “A vibrant mother that is active in PTA?” Slowly all of the labels that we use to define ourselves have been stripped away and we are left with the core of our being. This is an opportunity to really get to know the untarnished truth of who we really are deep, deep down. Although I was initially terrified by my Illness Identity Crisis, I eventually was able to embrace what it had to offer and found the beauty of a still body and a forward mind.

Example 1:

I was dying again. I had chronic rejection, very little hope of another transplant and spent most of my time alone at home. Going out was a feat of massive proportions with the oxygen tanks, getting showered and dressed, getting to the car…it just didn’t seem worth it. Besides, where would I go?

The television became my greatest companion. I had a detailed program schedule that I would adhere to every day. As one might imagine, this routine became empty and lonely.

I decided it was time for a project to keep me busy. The challenge, of course, was finding something that I was physically able to do. I decided I would try my hand at painting despite a complete lack of artistic talent and training.

I started with a small canvas and a few paints. I found that with little physical effort I could sit and create something from nothing. I was hooked. My canvases got bigger and bigger and I looked forward to the times when I had the energy to paint. I felt alive when I was creating.

I was so infected with the joy of painting that I required it of my visitors as well. I bought many mini-canvases and asked all of my guests (people tend to visit you when you are dying) to paint something that made them happy. Most people complied and it was so much fun to see what each individual would come up with! Soon, my kitchen walls were covered with paintings from those I love. It was very special.

As I grew gravely ill, I was no longer able to paint for more than a few minutes. I was working on a massive canvas with small mosaic-like blue squares. When people noticed that I wasn’t going to finish, they took up where I left off. That painting is hanging above my couch now and is called “Group Effort”. It is by far my favorite painting of all time.

None of my art was very good but that wasn’t the point. With a failing body, I was able to find excitement and creativity within myself that I didn’t know was still there.

Example 2:

Purpose. Isn’t that what most of us are looking for? When I was waiting for my first transplant, the lack of purpose in my life was so profound I could barely stand it. I felt worthless without that all-important j.o.b., relationship or overall reason to get up in the morning. It didn’t matter to me that I was dying and waiting for a lung transplant. That didn’t take me off the mental hook and I felt like I needed to be doing something.

That is when I turned inwards. I didn’t have the physical strength to “work” in an outward way so I created a job for my inner self. I thought about myself and what I liked and didn’t like. I thought about what I would most like to improve upon. I decided I needed to learn how to be a more compassionate person. I called my job “Project Compassion” and dedicated myself to reading about, praying about and practicing compassion. Soon, my inner life began to open up in ways I never knew possible. I was connected to myself, a higher power and others in a way I hadn’t ever been before. It was truly a beautiful journey that I will carry with me always.

The Verdict:

When the body can not function at its optimal speed and ability it can be very frustrating or even depressing. It can be the beginning of a long journey to discovering who you are without all the worldly trappings. I hope that perhaps you will now see this time as an opportunity to discover places within yourself that few people have the time or inclination to explore. It won’t stop being hard, but it can be a time of great purpose and learning. Invite the Illness Identity Crisis and see all the riches it has to offer. This post applies to those with serious and chronic illness as well as those staying home for a week with the flu!

In Healthcare, Everyone Counts

When thinking about healthcare, most people usually think about doctors first and nurses second. While they are certainly the main players, that doesn’t mean that other people in the medical arena can’t make a major impact.

Example 1:

A good friend of mine woke up in the middle of the night to find herself paralyzed on the left side of her body. She somehow pulled herself over to the phone and called someone to come get her and take her to the hospital.

She was admitted, of course, and began her long journey back to health with test after test. As it turns out, she had a form of a stroke called Vasculitis. She was terrified.

I spent the night in the chair next to her as much as I could. One morning, only a few days since she had fallen so ill, a young nursing assistant came in to give her a sponge bath. My friend, weak and scared was made to feel even more vulnerable by the stripping down of her clothes. As the woman washed her they began to talk. My friend told her what had happened and how scared she was. The woman began to ask her about Jesus and I didn’t think much of it as my friend is a devout Christian. Soon the conversation slid into why this had happened to her and the nursing assistant offered her opinion that it was due to her sinning nature. She surmised that if my friend had not been such a sinner this would not have happened.

As a little back story on my friend, she was very kind and very innocent. She had never been married, never been intimate and loved to teach children. Also, as I mentioned, she was a devout Christian.

To my surprise my friend did not defend herself. Naked and shivering, she began to cry and accepted the theory presented by the nursing assistant. I became enraged and told the woman to leave immediately. In my friend’s state it took me hours to help her see that the words spoken were cruel and untrue. After that day, I was never sure that my friend completely believed that this wasn’t caused by her sinning.

Just a nursing assistant? Yes, with a dangerous tongue and too much access to patients.

I am proud to say I got her fired.

Example 2:

After my first transplant I was in ICU for a week. I was intibated and on lots of pain medications. Every morning I would be woken up by the cleaning lady asking me if I was ok? I was baffled! Why did this woman keep waking me from my peaceful sleep?

One morning I was dreaming that I was cleaning out my closet (riveting, I know). I woke up slowly and saw that I had my arms out-stretched and was acting out the dream with my hands. It dawned on me then that this must be why the cleaning lady would wake me up! My morphine dreams were so real I would act them out and it would look like I was in distress.

I wish I could tell that woman how much I appreciate her concern. It is so nice to know that some people just care about patients, no matter what the job description.

The Verdict:

In healthcare, never underestimate the power of one person’s role. Never fail to report a callous care-giver or employee because chances are it is not an isolated incident. Always thank people for their compassion as it is a beautiful gift.

The All-Important Written Word

Short Story: Communication between patients and doctors is not always perfect. Likewise, communication between medical professionals is not always perfect (or even close).

There is hope and it comes in the form of the written word.

Experience 1:

Because of new research linking chronic rejection and acid reflux, I elected to do a stomach surgery that would prevent acid from getting in my esophagus. That surgery is called a Nissen Fundoplication and I also had a Pyloroplasty with it to aid in my stomach motility. That’s a lot of surgery on one stomach! Thank God my surgeon had been around the block a few times and understood the power of notes.

When a person has a Nissen, it usually prevents them from being able to vomit ever again. Nausea is a common problem for me, especially when pain meds are involved.

I don’t really understand why this is, but it is my experience that nausea is often taken very lightly by doctors and nurses. I tell them I am nauseous and they respond with an “Oh, that’s too bad”. Meanwhile, there are many drugs that can be used to treat nausea.

I suppose my surgeon had found that same thing to be true because he printed out a big note and posted it above my bed that read; “Treat Nausea Aggressively”. Guess what? Those people caring for me responded to that note as if God himself were speaking to them. I still had a lot of problems with anesthesia related nausea but I shudder to think how bad it could have been if he hadn’t taken the time to make that note. Thanks, Dr. F!

Experience 2:

For those needing inpatient care sleep is a rarity. Between the night nurses hollering to each other down the hall at 3am, the 24-hour-a-day blood draws and the revolving door of random visitors (professional and non-professional) finding time for rest isn’t easy.

That’s where the note comes in. Posting a note on the door stating that you are sleeping and to not disturb until a set time worked wonders for me. There’s just something about signs that people really respect and will adhere to the message.

Experience 3:

A chart is something that accompanies you wherever you go in the hospital or doctor’s office. A chart is also something that is written in but rarely ever read.

For those of us that hate to repeat ourselves, writing notes is a great alternative to saying the same information to every new face that walks in the room. Things like your medication regimen, questions you have and your list of symptoms are great to have written down, both as an inpatient and an outpatient.

The Verdict:

Mistakes can happen. Writing notes is one major step in helping to promote good communication for your team. It’s not rude or arrogant; it’s good common sense. Having a written note means you can relax more and feel like you don’t need to defend yourself even in your sleep. It can also prevent frustration for the patient as repeating yourself can be annoying.

The Pain of Positive Thinking

At some point in a person’s life, they usually stumble upon the allure of The Power of Positive Thinking. While this concept is certainly valuable and useful, taken to extremes it can also be destructive.

Example 1:

When I was in my mid-twenties I moved to California and became deeply immersed in my spirituality. Part of that included a mentorship with a well-known female guru I will call Tisha. She had a good size following and I was always honored when I was able to get face time with her alone. I respected her tremendously and was an eager student.

I was being trained that nothing in this world is a coincidence and that we have control of our own lives. I learned how to pray for things and they would happen. I learned to value myself as an important child of God. I worked hard to believe in myself and in my future.

The one thing that I wasn’t able to “transform” was my health. I would still get sick and continued coming and going from inpatient hospital care.

Tisha told me that I could be well if only I wanted it enough and believed that it could happen. At first this was an inspiring concept and one that I embraced fully. I visualized my healing and trusted that God would provide me with a way out of my physical ailments. Time passed and my health continued to deteriorate despite my prayers and affirmations. Tisha’s words rang in my ears: “You can be well if you only want it enough and believe it can be so”. I thought I wanted it. I thought I believed it could be so. I assumed I merely had not dug deep enough and had hidden resistance to health in my unconscious self.

My failure to heal slowly led to a failure to believe in my own spiritual depth. I told myself that if I only prayed harder, loved God more or believed more strongly, then I would be free of this disease. I began to feel bad about myself and my connection to God. I beat myself up for my perceived spiritual inadequacies. Eventually, I became depressed. All the while, my disease kept on progressing without a hint of it recognizing my spiritual journey.

Example 2:

Before my first transplant, I had a great teacher in acting school. He was from Russia and taught an exciting movement class. He taught us a movement ritual that he called “Form” every day. When he would hear me coughing he would assure me that if I just did Form enough, I would be cured. I thought he was out of his mind but secretly tried it anyway. He was wrong.

Verdict:

So many people have the magic bullet; that thing they know about that will fix any problem. From self-help gurus to alternative treatments to spiritual teachers, they have the right recommendations and advice. There is nothing wrong with embracing these ideas. When it becomes a problem is when you do not allow the possibility for them not to solve everything.

What I have come to realize is that we are all made of matter and are earthbound creatures. Because of this, we must abide by the rules of earth. Sometimes miracles happen. Often, they don’t. Why isn’t it ever considered God’s will for a person to be sick? Are we so narrow in thought that we think we should all be taught lessons the happy way? My disease, no my diseases, have been hard but I wouldn’t trade them for the world. They are my ticket to learning what I am here to know.

Please don’t ever tell me someone “lost their battle” to a disease. This is not a war and there is no one to blame. I have friends that I have lost and some I never got to meet. I would never tell them that they died because they didn’t think more positively. Feed your spirit with love and compassion but beware of the Pain of Positive Thinking.

A Letter to Dying

Dear Death,

I think I was born being uncomfortable with you. Growing up, the thought of a loved one dying filled me with cold panic and I was unable to allow those thoughts for any length of time.

When I got to be around 10, I started to understand the severity of my disease. As a ploy for attention, I would proudly announce to my classmates that I would not live into my 20’s.There was a part of me that enjoyed seeing them squirm with discomfort, it was a confirmation that nobody I knew was comfortable with this topic. My proclamations were light years from my heart as I was so disconnected from the emotional truth that I shut down until high school.

I grew sicker as I grew into my teens and spent my first weeks in a hospital around the age of 12. There was a boy down the hall who was 11 and he also had CF. I knew that he was sicker than me because they moved him into my room to be closer to the nurses’ station and kicked me to the end of the hall. One night, I saw his parents leaving and crying. That familiar cold chill went through me and I assumed that you had taken him. Unfortunately, I was right.

This was a boy I had never known but he was one year younger than me and he was dead. I cried for him and cried even more for me. We had the same disease, he was one year younger than me and he was dead. You didn’t make sense.

My uncle died not long after this event and I remember the feeling of complete terror and helplessness as we greeted my grieving aunt and cousins. I wanted to smile and pretend that we were having a pleasant family reunion but their tears foiled those plans. I wanted to avoid the topic of my uncle entirely. I wanted to hide until the sadness around me was over. Instead, all I could do was sit in a room of grieving loved ones, half in shock and half sick to my stomach.

At 13, my fear of my own death was abstract, but palpable. I began to act out in dark teenager kinds of ways. I dressed in black and wrote somber poetry about the meaninglessness of life. I drank and smoked with my friends. The smoking especially felt like a true empowerment and a “screw you” to this disease and to you. I always have seen the disease as separate from myself and, in this case, that proved to be a great disservice to my own health.

It would be many, many years later that I would find myself face to face with you as an adult. I had to take two passes at the dying thing before I could move aside my fear and denial long enough to embrace what was happening. With time and a weakened body, I grew unafraid of your truth and welcoming of your gifts.

I could write pages about the freedom that comes from accepting you as a part of life. I could write books about the beauty of dying and how it can transform your entire foundation. (At least I’d like to think that I could.) But the feelings of peace that I have experienced are memories now. I can only explain what I remember. I can only tell you that what should have been “the worst part of my life” is that part that I look back on most fondly. I can see the bitter-beauty and complexity within my experiences and tales of those around me. I can only wish that telling my story will help others understand why a big piece of me looks forward to the dying I have to do in my future.

Thank you for everything,

Tiffany

Patterns of Illness

I have found that the patterns of illness are hard to break. Although I am mostly healthy now, I still react to my environment with many of the same thought patterns and emotional patterns of when I was very sick. When I see a flight of stairs, I still react with dread, despite the fact that they no longer pose as an obstacle to me. When I see a full schedule on my calendar, I react with fear and panic, convinced I will not have the strength and energy to get through the day. This is simply not true.

There are certainly patterns that have diminished over time. I no longer fear household chores like laundry. Somewhere along the way, my body and mind have recognized that this no longer poses a threat to my well-being. That is why it is still surprising for me when I have a strong reaction to things like stairs and my schedule.

I try and talk to myself in a reassuring tone that there is nothing to worry about anymore. That helps for a moment, but the emotions are so deep they resurface at the next turn.

It makes me sad that my body and mind have been through so much difficulty that I react to the world in such a fearful way. I pray that as the years pass with good health still in tact (God willing) that these patterns will continue to dissipate and I will find a deeper healing to the wounds that have caused such emotion.

If You Go...They Will Treat You

Have you ever been to a mechanic, told them your engine was making a knocking noise and had them send you home? Of course not. That’s not what mechanics do when you tell them your engine isn’t working right. They take it for the day, or two, test it and try to fix it. Sometimes they will do lots of tests, tighten bolts, change belts and there will still be a knocking noise. Sometimes, they will discover there was a loose marble in your trunk making all that noise. Sometimes, they will discover that your engine would have fallen out on the highway had you driven one more mile.

Doctors are the mechanics of the body. If you go to them with a symptom or two, they will treat you the way and to the degree they see fit. I may think I have only a cold worthy of some sympathy and an acknowledgement but they see a potential lung infection on the horizon and prescribe IV antibiotics through a PIC line! Ouch! I could argue and bargain (‘if I get worse I’ll do IV’s’ etc.) but that is usually futile. If I go to the doctor for my cold, I can expect for them to treat me and HOW they treat me is not in my hands. I can’t get upset with their solution when I’m the one that asked for them to check the engine!

Because of this, I am cautious to have clear, responsible definitions for myself of when I am in trouble (i.e. "I will go to the doctor if I get a fever with this runny nose) and only reach out at those times. Otherwise, I keep my cold to myself.

Like Most Girls: A Love Story

Like most young girls, I spent hours dreaming of the day I would meet a man and fall in love. Romantic dates, wedding dresses, and images of happily ever after danced through my head. All the while, the nagging question underneath; “But can a girl with who is so sick have all those things?”

Dating isn’t easy for anyone. Proof of that can be found simply by visiting the “self-help” section of any bookstore! Whether we are trying to figure out the “rules” of dating or understand the differences between “Mars” and “Venus”, there clearly are a lot of people in need of guidance on the topic. Most of us reach a point in our lives when we deeply desire a partner and rarely have a smooth journey in finding, or for that matter, keeping one.

Acknowledging the already challenging nature of love relationships, it is no wonder that adding the difficulties of illness into the equation can create another level of complexity. As a young girl seeking love, I made many mistakes. As a young CF girl seeking love, I made many excuses. Using trial and error as my guide, I continued to make mistakes and excuses well into adulthood. There aren’t many role models out there for such a situation and I fumbled desperately in the dark.

A confident person in most of life’s arenas, my “relationship self” never seemed to match with the rest of me. When talking to boys, my focus was on saying what I thought he wanted to hear. All I cared about was getting him to that like me and become my boyfriend. It never occurred to me to question whether or not I liked him! In relationships, I was submissive and often was talked down to and told what to do. Inside, I knew that wasn’t right but I couldn’t bring myself to “rock the boat”. Deep down, somewhere along the way, I developed an unconscious belief that I had to trade his bad behavior for him having to “put up” with my illness. I was often in a state of vulnerability and weakness. That state of mind led me to do things I wouldn’t have done had I been true to myself. It allowed me to be in verbally abusive, long-term relationships and to hang on to those relationships out of fear of never finding better. Many women have walked a similar path that I am describing, but Cystic Fibrosis was a large driving force behind why it was so difficult to change these detrimental patterns. There was unaddressed anger and sadness there and I often looked to men to make me feel alright about my disease. That never worked! With some counseling and a determination to be loved the right way, I eventually found my way out of that confusing maze.

Now, after consciously working to change my patterns, I have found what I always hoped, but never truly believed, was possible. I have the happiest and healthiest relationship that any human being could hope for, with or without CF. I also have the battle scars from years and years of bad choices and faulty perspectives. All I can do now is talk honestly about all the things I wish someone had told me when I was searching for answers to the tough questions. I hope that some of my big mistakes will serve as a warning to others as well as an inspiration to require more from themselves and those they choose as partners.

Below I have jotted down a few things I Wish I Knew A Long Time Ago. They seem simple, but they really are key.

Pre-Dating “Homework”: It is essential before you begin dating that you clearly establish a strong foundation of self-love and appreciation. Sadly, it is easy for some girls (and boys) to see themselves as “damaged goods” and therefore be willing to do things in relationships or overlook major character flaws that they wouldn’t if they didn’t have an illness. The first step in doing this is to uncover the difference between your mind, your body and your soul. We so often find our self-esteem in the clothes we wear or how pretty we feel, but it’s important to go deeper to discover what is valuable about you beyond the physical. Once you are able to make that differentiation, you can then explore who you are and what you believe about life on a much greater level. When you can truly see yourself as the amazing person you are, you will then be able to begin the search for a healthy relationship.

Dating: There are so many questions that come up when you first start dating a new person. Things like, “When should I tell him about my illness?” and “What kind of reaction will he have?” can distract you from getting to know someone. The answers to these questions need to be explored in your “homework” so you can enter into dating with a plan. You have to figure out where you stand on these important issues before you go on the date. Trying to sort out when you should tell someone about your physical problems in the back of your mind won’t work; you won’t be engaged in the moment and will miss getting to know the person in front of you. If you think of these things ahead of time, you will have a game plan and can feel more confident.

In general, when you are on a date, it is essential that you find techniques that help you maintain your level head and not get caught up in the “need to impress”. Pretend like it’s a job interview and you are the employer! There’s only one position available as your partner, so be discriminating and choose wisely!

Getting Serious: When you have an illness, falling in love can feel bitter sweet. Amidst the excitement and joy come the questions: “How will we handle it when I get sick?”, “Will he stay with me when I am in need?” and “Can I or should I have children?”. Facing the sad parts of your reality head on is key to having a strong relationship. If you can’t talk about the hard things, there will be trouble down the road. As the person with the illness, it is your responsibility to educate and initiate dialogue about your disease process. It is your partner’s responsibility to take it seriously and look within themselves to see if they are up for the challenges ahead. If your relationship is going to work, you will both need to feel safe and comfortable in talking about your true feelings at every turn. While facing illness is difficult, it can enhance a relationship with the right partner because you both will be keenly aware of how precious your time together is.

The burning question for many people is; “Can I have the relationship of my dreams despite my illness?” and my answer is “yes”. There is someone out there who will love you enough that a short time together is better than no time at all. Is your life more complicated because of your illness? Yes, but you have the opportunity to embrace your challenges and enrich your life and your love.

That Which is Important

"Almost dying changes your life forever...for about two months."
-The character of "House" on the TV show House

This is so true. I love this quote and think of it often.
Being sick has a similar effect, perhaps not quite as overwhelming. I really felt it yesterday when I went back to work after having been out for two weeks recovering from surgery. It was nice to be around people again and their well-wishes filled me with the joy of human kindness. They told me that I was missed and the reasons they were glad I was back and that made me feel valuable. Things felt comfortably old and new again all at the same time.
My internal shift was mostly apparent when a situation arose that was stressful. My normal reaction would have been to become stress but not yesterday. Yesterday I still carried with me the value of life and the appreciation for the day that being ill gives you. When stress came knocking, I found it to be silly and fought to not giggle in front of those around me that were upset. What joy it was to have this distance and perspective.
Bottom line: I had connected with That Which is Important. There was a time, when I was dying, that I lived in the world of That Which is Important and easily kept both feet on the ground with a steady head, but that has been years past. This was a sweet and familiar breeze wafting through, oh, how I had missed it. If only I could find a way to bottle the knowing and holding true to That Which is Important...I could giggle at work all day long! What fun that would be.

I've got a lot of work to do...wait...wrong again!

I've got a lot of work to do. After having 2 weeks off of my receptionist job I have learned some things. I have listened to my mind chatter at me and found it to be quite annoying. "You've got to do this", "Stop doing that so much", "Never do that thing again"...chatter chatter chatter. So many self-made rules. A small dictator lives in my mind and is constantly attempting to create order and get "results".
At one time I was inspired by the idea that I should live in a way that will ensure I feel proud of myself on my death bed. Now I have seen that inspiration transform into a burden. I am driven to bake an extraordinary life pie but with all the ingredients to make only the common apple. That would be ok if I weren't so focused on attaining some yet undiscovered fruit, baking it in a yet undiscovered kind of crust and then winning the "Most Extraordinary Pie Ever" contest. It is my desire for uniqueness and success that drive my mind's incessant chattering. It's now my job to find a way to want less. As I write those words I am being attacked from within by soldiers from The Extraordinary War but I must stay strong.
I will sleep late, I will watch TV, I will eat crap, I will not exercise, I will write only if the mood strikes and I will work at a job without higher aspirations. Perhaps if I am able to overthrow my Mental Dictatorship I will find peace.

TRUCE

Everyone has their own coping mechanisms. Some people I have known use denial. They know as little as possible about their illness, their medications and their prognosis. From what I have observed, this manifests as chronic worry about every tingle and unusual sensation that could mean more illness. I have also seen denial manifest as a manic need to do, do, do even when the body is too tired to continue. There is always another job to do and there is never a moment without noise.

Some people I know use self-pity. They see themselves as victims and rely on other people to “serve” them. Their identity is completely wound around being helpless and sick. This mentality continues even when the body is healed. From what I have observed, this manifests as deep fear of failure and inability to embrace life.

I use positivism as my coping mechanism. I choose to see only the bright side of my illness and concentrate on all the lessons I have learned from being sick. I find a deep spiritual meaning in all that I have suffered and feel closer to God because of it. Sounds good right? If only it were that easy.

It took me nearly 34 years of living with severe illness to finally admit to myself the other side of that story; the side of the story that isn’t so pretty. The truth is that I disconnected from my physical self early in life. I found great comfort in viewing my body as merely a wrapper for my true self, the soul and mind that I call “me”. That separation went beyond a metaphysical philosophy, however. At the darkest corners of myself I hated my body. I hated it to the extent that I wished it pain and suffering. I secretly believed that it deserved every needle poke, every IV and every cut of the scalpel. I hated it so much that I blamed it for my life’s struggles and felt that it had betrayed me by being genetically flawed. I had an entire belief system that was unknown to my conscious mind.

When I discovered this unconscious set of beliefs, I was terrified. This went against all that I thought I was and all that I thought I believed about my illness. I wasn’t nearly as evolved as I like to think I was!

As strange as it sounds, my body and I needed to have a conversation. My body was resentful that it had been violated with all the thousands of medical interventions and I was resentful that my life had been interrupted over and over by a mutated gene. It was an internal conversation between 3 parts of myself; logic, the part I consider “me” and my physical self.

Logic told us that life would be much better if we could learn to work together and be in harmony. “Me” and my physical self didn’t even know how to take that first step to putting the past sufferings behind us and coming together as one.

As I write this my body and I are in the early stages of figuring out how to be a team. We have called a truce and will work to have compassion for each other. I see that if I love my body more I will treat it better. Perhaps I will want to eat well and exercise! At the very least, I will stop seeing it as a separate part of myself that is an enemy and recognize it as another part of what makes me who I am.

My body is an innocent in this scenario, just as I am. I see that now and am working on forgiving a wrong that was never committed. I am working on loving myself from every angle.

Accumulatioin

Medicine often generalizes people based on their diagnosis or medical history. People can make the assumption that because I am “a frequent flyer” that simple things like blood draws would be a piece of cake. I was surprised to learn that it is common for the opposite to be true.

Example 1:

I was in the hospital suffering from the effects of a tick bite and had been diagnosed with Rocky Mountain Spotted Fever. I wasn’t feeling very well, as you might imagine, and was getting much needed rest. It was 2am and I was sound asleep.

A phlebotomist came in my room and startled me by turning on the bright lights over my head. I tried to keep my eyes closed and not let the rumblings of her cart and the scrunching of her papers wake me up so much that I could not fall back asleep. Before I knew what was happening, she had put a needle in the bend of my elbow. I didn’t have the chance to tell her that I preferred to be poked in my hand as all of my other veins were weak and usually blew out.

Still working to keep myself quiet enough to be able to fall back to sleep, I remained calm and let her finish. When she left however, I was met with an excruciating pain in my arm. I can only assume that she managed to hit a nerve because the pain was nearly unbearable. I didn’t bother to call the nurse, I knew there was nothing they could do for this kind of pain. Instead, I cried for hours, trying to let myself accept the pain and just go back to dreaming. I was unable to sleep again until about 6am in the morning when the pain finally started to diminish.

At 7am the intern came in to wake me up and start my morning of questions and more tests. I had lost hours of sleep due to pain but there was no sympathy on the part of the staff. I truly don’t think that they understood how a blood draw could hurt so much. I wouldn’t have understood either if it hadn’t happened to me.

Had it not been for the hundreds of prior blood draws and IV catheters that had made my veins so fragile, I doubt this would have happened. My body had reached a physical limit as to how much poking and prodding it could stand.

The accumulation of years and years of invading my veins had make simple blood draws a painful event even under the best of circumstances. It has gotten to the point that I often cry all the way home after a routine blood draw. This kind of accumulation is not something people in the medical field seem to be aware of and it is up to you to educate them as well as prevent against any unnecessary tests and procedures that will add to this degradation of physical tolerance.

Example 2:

I never thought much about cell memory until I experienced its effects. When it came to surgery, I had always had the attitude that I was asleep so what they did under anesthesia didn’t matter much. In fact, I was never concerned about the transplant surgery itself because “I got to sleep through it”. I was always more worried about the recovery after.

While that is a partially true statement, I have found that it is a bit naïve.

One day, when I was playing a game, I found myself in a very similar physical position to the position that I was in when I had both of my surgeries. I almost immediately began to feel an emotional discomfort. I tried to ignore it so that I could stay in the game but the feelings grew. Soon, I was feeling strong anxiety and began to cry. I left the game and went off on my own. What happened next was a confusing series of emotions. I began to sob uncontrollably. I still had no idea what was happening to me and why I was so upset. Somebody came over to me and asked me what was wrong. I had no logical explanation for my emotional outburst. The only thing that was coming to my mind was the word “Violation” and an intense feeling to match it. I finally put the pieces together and realized that my body was speaking to me and my feelings were not coming from an emotional place but a physical one. I sobbed for a solid hour and let my cells release the pain of my two surgeries. “I” had been asleep, but clearly there was a part of me that wasn’t.

After my second transplant I was facing another surgery on my stomach. This was a laparoscopic procedure and by all accounts a “minor surgery”. My reaction to the idea, however, was not minor in any way. I was terrified of the thought of it and fought the team tooth and nail on having it done. It finally occurred to me that part of my reaction was not coming from my conscious self, but rather my cells once again speaking to the pain of their violation. I went forward with the surgery, but was aware that there was a part of me that needed nurturing and assurance, and it wasn’t my mind.

Verdict:

My body has been through so much cutting, poking and prodding that it has reached a certain limit. I now try to communicate this to my caregivers before a procedure because I know their expectation of me may be inaccurate. They think because of all that I have been through that I will be an “old pro”. I have found in talking with other patients that this feeling of accumulation is not uncommon and should be factored into the emotional formula that comes with undergoing any procedure, large or small.

Alternative Medicine

Excerpt from "Alternative Medicine" as seen in Sick Girl Speaks!

He came highly recommended to me. He had been one of those people that seemed almost to defy physics in the magic he could perform to help the sick. A woman I had close connections with would see him once a week and spoke of all the amazing things he knew about her body and how to heal it; nothing that the western doctors had been able to do.

I made an appointment and was anxious to see what this man had to offer me and my ailing health. He lived far out in the country near a beautiful lake. The house was large and had an entirely separate building as his office. One thing was for sure, he made money doing this healing work.

When I went inside, he was with another client. I sat in the waiting room and noted the many Native American chachkis around me. That made sense, someone who had been trained by Native American healers perhaps? I was excited to find out where his skills came from.

His client left and he came out to meet me. Although I was startled by his appearance, I was not surprised. He had long grey and white hair and so many crystals dangling from everywhere that I hardly noticed his weathered face. He spoke to me in a soft voice, one that I had heard many times, one filled with pity and sympathy.

He took me back to his large “treatment area” that was reminiscent of a covered greenhouse. Strange art, presumably his, was sitting on the floor encircling the room. We went to the very back corner where he had me sit in a chair and he sat at his desk.

He began by asking me to put both feet on the floor, closing my eyes and breathing deeply. Very familiar with this routine, I obliged with the exception of the breathing deeply part, as I was unable to do so at this point. I naturally began to go into my meditative state, a place I was familiar and comfortable with. He began talking to me about going inside and feeling the white light starting at my feet and moving up my legs into my torso, my arms, my head. While the meditation was routine, his comments were not. He was acting as though he could see the light and confirming that I was successful in my mediation. It rang phony to me and I decided to test him. When he moved on to an exercise where I would “open” and “close” my heart, I purposely did the opposite of his directions. He proved to me that he wasn’t “seeing” anything by his dramatic ooh’s and aww’s at my ability to open my heart when I was in fact not. He was on thin ice.

After the meditation was done, he stared at me, intensely, for what seemed like weeks. I was irritated with his charades and stared back. Eventually, he asked me in that liquid tone, “What do you think?” And I said “I’m just waiting”. He replied “No, what do you think of me?” I replied “Not much.”

He was clearly upset and flustered by my lack of wonderment. He then launched into a lecture about how I needed a spiritual tradition and that when I found one I would be much more centered. Translation: “I am the Guru here, you have no idea what you have in front of you and you’re way off base.”

Little did this man know I did have a very strong spiritual tradition; one that I had in fact dedicated much of my life to. His rude assumptions based on my appearance alienated me even farther but, for some naive reason, I still let him treat me.

We moved to the table and he hooked me up to a machine that he had “adapted”. I recognized the machine; they had the same one in my chiropractor’s office. The wires did not look the same and it did not have sticky pads either. Instead it looked more like small coat-hangers at the ends. He bragged that this was the only machine of its kind. Again he was miffed when I told him my Chiropractor had the same one but he quickly replied; “But does hers measure your Aura?” No, hers did not measure a person’s Aura because that would be stupid! By definition, an Aura changes second by second based on your emotions and the environmental stimuli. Even if he could measure it, what would be the value in that? Weary of our battle of spiritual wills, I agreed he had the only one and shut up. I was ready to go.

It would be a long time before I could leave this man’s lair. I was on his table for 2 hours, getting my ‘Aura checked by the only machine of its kind”. Finally, it was time to go and he was going to make me up some homeopathic remedies. I declined. Again, he was flustered but offered a big discount because I didn’t want his remedies. He charged me $200.00! This was a discount as he normally charged at least $500.00 a session. I threw my check at him and got out of there as fast as I could. I obviously never went back.

I shudder to think what might have happened to my bank account if I hadn’t had the presence of mind to test this man’s abilities. I like to think that I would not have fallen into his spell like my friend but someone who promises health in the face of death can be quite an alluring thing.

These are the kinds of alternative “practitioners” that give all the good ones a bad name.

He promised me the things I most wanted, health and happiness, and used those things to lure me into his practice, despite his limited ability to provide those things. As for my friend, he became her primary source of treatment and strongly advised her to not seek council outside of his techniques. The result was that she went into early kidney failure and he tried to treat it with his remedies but she became so ill she had to “defy” him and seek out a western doctor. She then realized that he would have let her die before relinquishing control of her health. This is when she chose to stop seeing him.

Choosing Your Doctor

Excerpt from "Choosing Your Doctor" as seen in Sick Girl Speaks!

Compatibility with your doctor is an issue of great importance. Whether you see him or her once a year or once a week, it is important to have some of the same philosophies and approaches to your health care.

Personality is important, and that is obviously something completely unique in every situation.

There are a few generalizations I can make about doctors, however, that are worth considering when you are deciding if you and your doc are a good match. At the very least, it is imperative to know that when it comes to your main physician, you do have choices.

Individual vs. Team

Both of these options have clear pro’s and con’s. Being treated by and individual allows more room for consistency and personal interaction. For the most part, I find this to be ideal. However, example 2 is one dramatic experience that can outline the flaw in this system of care.

The upside of the team approach is that there are many doctors working with you who are able to put their heads together to find the course of care best for you. There is less burnout and there is always someone to cover for a sick or otherwise unavailable doctor.

The down side of the team approach is the revolving door. Each time I go to clinic at my Carolina Hospital I seem to have a different doctor. There is less consistency of care and less of a personal rapport. Sometimes, the team does not agree on the next step and this can cause a gridlock that will postpone your treatment for days, maybe even weeks.

Conservative vs. “Laid Back”

By conservative, I do not mean politically. There are some doctors who will not take a chance with your health in any way. That means, if you come in with a fever, they will send you for blood work, a CAT scan and urinalysis before they are satisfied that you only have a passing virus. The “laid back” doctor, however, will assume it’s nothing before they assume it’s anything. They will send you home and let you “wait it out” before they will order tests or prescribe meds. Both have pros and cons, but it’s important to know which approach you prefer before choosing a doctor.

Old vs. Young

At the risk of being “ageist”, I have found there are differences in the two. They both have very distinct benefits and it’s up to you to decide which one seems more important.

An older doctor obviously has more experience. This translates to the patient as less guess work and unnecessary tests. I have often gone into see an older doctor with unusual symptoms and they know right away what is wrong with me. Why? Because they’ve seen it first hand millions of times.

A younger doctor may have to do a little more research to figure out the cause of your problems, but the advantage to a younger doctor is that they are more often up on all the latest drugs and technologies. Medicine changes rapidly, and it’s difficult to keep up. A younger doctor is more likely to know about a new procedure or treatment that can be a smoother road for you than the roads of yesteryear.

Male vs. Female

The difference between male and female doctors is very much what you might expect. Women tend to be better at the whole beside manner thing. I have no evidence to prove that they are better or worse doctors than men, but I do sometimes worry that their emotionality can lead to a quicker burn out.

Current Philosophy

In many areas of medicine, there is a drive to use the latest and greatest theories to enhance or prolong life. What is interesting is that no two centers seem to have the same idea of what that “latest and greatest” may be.

When I was waiting for my first set of donor lungs I moved to California. I was very sick but I figured I could wait somewhere new, different and warm (as opposed to the third floor bedroom at my parents’ townhouse). I transferred my care to a California University Medical Center and was very happy with my team of doctors. I was still considered a patient of Carolina University, however, and so was not bound by the philosophies of California. At that time, all California CF lung transplant patients were required to undergo sinus surgery before the transplant. The theory behind this was that the sinuses had infection and that infection would eventually infect the new lungs and therefore it was best to clean them out. My doctor at home was in complete disagreement with this idea. He felt strongly that many patients would die getting the sinus surgery and was far to much of a risk to take. This kind of disagreement with procedures is not at all uncommon. Medical theories and practices change with the wind and when you are choosing your doctor, you may also be choosing a certain protocol. Be sure to do your research and discover for yourself if this is a protocol you agree with.

It's Time for a Medical Revolution

What is a revolution? It is when people finally realize that the system isn’t working and isn’t going to change on its own. It’s when enough people share their experiences and decide that things should be different. It’s when the people ban together and work to protect themselves and take a stand for what they believe. The Medical Revolution is not going to begin with the Doctors, Nurses or hospitals. The only way for us to change the way we are cared for, is to change the way we approach our health care. The Medical Revolution is not a banding together of a group carrying signs and marching on Washington. We’re all too sick for marching, right?

This revolution is one by one, patient by patient. The more you know about the things to expect, the ways to navigate yourself and the tactics to try, the better off you will be stepping over the threshold into the world of Medicine. If enough patients and private caregivers demand the respect, organization and consideration they deserve when under medical care, eventually the system will have to adopt policies to ensure these new demands are being met. It will simply be too difficult to deal with a hospital full of squeaky wheels!

This is not a blog about politics but it is a book about the beginning of a Revolution.

It is my hope that my candid disclosure of many different aspects of my illness experience will give medical professionals a different outlook on the patient perspective. That is one class that is not taught in med school but needs to be.

May all of my experiences serve to help others navigate around similar obstacles.

I send healing and peace out to all of those struggling down the path of illness.

Thank you for reading this blog.

Squeaky Wheel

Excerpt from "Squeaky Wheel" as seen in Sick Girl Speaks!

A friend went in to see her specialist complaining of numbness in her legs, extreme fatigue and strange tingling sensations up and down her left side. Casually, the doctor mentioned that it could be Multiple Sclerosis, among other possibilities. Because her mother has MS, it was obviously the possibility that stuck out in her mind and sent chills of fear through her aching bones.

They took blood and promised that the results would be back on Friday, 4 days later. 4 very long, scary and uncomfortable days. During that time her symptoms grew worse and she began to have additional ones; the primary being painful white bumps on the back of her throat.

Thursday came and went with no call about her test results. At my urging, she decided to be a “squeaky wheel” and call before the end of business on Friday with two objectives. 1. To see if her blood work results had come in 2. To offer her new symptoms as they may be a key in figuring out what she was dealing with.

She called at 2pm and the office had already closed at 1pm. Choosing to go against her instinct to be “nice” and wait until Monday, she called the emergency number given. Surprisingly, the doctor himself answered the phone. She began to tell him her newest symptoms and he gave her a quick over-the-phone diagnosis. Before she could ask what her blood work showed or if the new symptom was related, he had another call and had to get of the phone immediately. She held on the line waiting for him to finish the other call only to be met with an impatient click and “What else do you want?” She could barely get any words out before he once again claimed the urgency of the other call and hung up. Naively, my friend thought he would call back. He did not.

At some point it dawned on her that he may have not even remembered her case and the fact that he had said she may have Multiple Sclerosis. He thought she was calling the emergency line about white bumps in the back of her throat!

Had it been me, I like to think I would have called him again, but I can’t be sure of that. For people that are not used to or comfortable with being assertive, it is often very difficult to push the issue with the medical team. For my friend, calling the emergency number was a bold move and calling it again seemed out of the question. The result is that she got spend the rest of her weekend being very sick with no idea what was happening to her. For the doctor, it was two more days. For a patient, it is a lifetime of worry and contemplation.

Verdict:

As a patient, I have learned the value of being a squeaky wheel. As someone who works in a doctor’s office, I have learned the necessity of being a squeaky wheel.

There is a fine line between being a Squeaky Wheel and being a Pain In the Butt that will make people not want to help you. I like to qualify it by saying; you must be a humble, polite, persistent squeaky wheel. Don’t assume they are putting themselves in your shoes. Don’t assume they are thinking about you at all. Fight for your information without alienating the team. Do not be afraid to be that Squeaky Wheel in order to get the best care possible!