“After two years of not being able to read aloud to my children more than one and a half pages of a chapter book, or one short picture book — I can finally breathe!!! I am so excited. We have nearly finished George Muller, and I am totally motivated to get back into the swing of things. My doctor said my trachea sounded great yesterday, so unless more problems come up at a later date I will not need further surgery. I am still frightened, I think I can still hear something when I am exerting myself; but Perfect Love drives out fear; so I am asking God constantly to help me not be afraid and trust Him for my future.”
I wrote this paragraph just a few weeks after my very first surgery — in 2006. Unfortunately, no permanent cause or solution for Ideopathic Tracheal Stenosis has ever been found. I just had my thirteenth surgery about two weeks ago. If I lose sufficient weight, I might be able to have a tracheal resection to remove the damaged section of my trachea. This surgery is highly invasive and does not always work. I just found out with my last surgery that the length of my stenosis has nearly doubled, which may make a resection out of the question anyway.
Seven years ago in January, I had a rash. It was not a small rash; though it did start small. It was completely symmetrical starting first on one hand and then the other, and eventually spread all over my body before Doctor’s finally administered prednisone. During those 15 days, I became nearly insane with the deep burning constant itch. It was not an easy time. No Doctor ever convincingly answered the burning question — what is causing this? The rash came back 5 times, dramatically less potent then the first, but still there. By the time May was rolling around, people at church were telling me I needed to go to the Doctor for my breathing. I couldn’t walk with my friend without being completely out of breath. This was unusual for me; since Donna and I had been up to that point increasing our speed on our walk and I was improving on my trek up the hill.
Finally, I went to a doctor. He immediately diagnosed me with Adult Onset Asthma, put me on medications, and sent me home. My breathing did not get better. In fact, it began to get worse. I went back to that doctor six more times, and by the 3rd visit I had discovered my pregnancy with Caleb and informed the doctor. Five times he changed my medicine and told me to come back in three weeks because NOTHING WAS WORKING, but he didn’t want to prescribe stronger medication during a pregnancy. On the 6th visit, he immediately starting suggesting another new medicine; and after a few minutes of talking he looked at me and said “Are you pregnant?”
I switched to a specialist and by now it was October. She did a Spirometer test, and fussed and fumed out in the hallway that I did not have asthma, and that I clearly didn’t try very hard on the test etc. I couldn’t really understand what she said; but I got the jist of it. She thought I was just a complaining pregnant woman with no problem! She did hear the loudness of my breathing once she examined me though, and put me on Pulmicort — a child’s medicine. I asked her if it was stronger than what I had already tried. She said, No not stronger, but different. So I took the medication faithfully, but I did not go back for my follow up appointment. In February of 2006, I had a beautiful baby boy. During the final stages of labor my breathing became so labored they put me on oxygen, my heart felt like it was pulling out of my chest. But I made it.
What followed were some of the hardest months of my life. I could NOT breathe. I could not read to my children even two sentences, I could not walk up the stairs, I could barely carry my newborn without struggling to breathe. No ammount of medication helped. I used rescue inhalers constantly; still thinking I must have asthma. Everyone thought my problem would go away if I would just take my medication. We were moving to Virginia, and in the course of that move I was exposed to ammonia that a maid had left puddled in the corner of the shower in a hotel room, moved the next week after spending several hours in the specialists office with the nurse practitioner wondering why she couldn’t hear breathe going into my lungs, nearly collapsed (alone with four kids) when my van’s air conditioner stopped working in August heat, walked into an apartment full of smoke which I had nearly caught on fire by accidently leaving something on the stove and then the next day walked ten blocks to a Doctor’s office after my son was attacked by a dog. The doctor who was supposed to be checking out my son put me on oxygen and told me to find a new Asthma Dr. right away and get help.
Dr. Wu (a pulmonologist) did a much more advanced analysis of my lungs. My lungs were fine. After listening to me, she showed me the charts. “It looks like you’re lung capacity is capped at about half the normal capacity. This could reflect poor effort on your part; but it could also be due to an obstruction. I want you to go get a cat scan done, and see an ear nose and throat specialist to check for polyps.” So, I got the cat scan done and it came back normal. Of the two “best” Ear Nose Throat specialists she referred me to, only one took my insurance. He was over an hour away. I made the appointment with no small amount of frustration. Turns out he is considered one of the best doctors in the capitol area.
This ent doctor did a scope and did not agree with the cat scan results, and sent me for a fine-cut cat scan with more detailed analysis. The second cat scan revealed a tumor called a stenosis in my trachea. On the day of that cat scan Dr. Furst called me and told me to come in with my husband on Monday. He did not tell me I had a tumor. The day after that appointment, I had surgery. My trachea had an 85% blockage. The Dr. who did the surgery was among the finest ents in the nation, perhaps the world. He was the Department Chair at John Hopkins, the author of the University textbook, a world reknown international surgeon, and a “friend” of my ENT. He returned from Europe on Monday, saw me on Tuesday, and did the surgery on Wednesday. He did the surgery — not his residents. He did not allow a tracheotomy — the entire team wanted to do one; he insisted that the surgery could be done without one. He did a biopsy, a tracheal dilatation, and bronchoscopy, and a larygoscopy. The trachial dilatation was accomplished by inserting scopes of increasing diamater into my trachea to dilate the tissue and restore it to its original size opening. Here is what I wrote after that surgery:
“When I woke up I could breathe. Really breathe. And, I have been really breathing ever since. I have also been making more cookies, reading more books, playing on the floor. All those things that really matter. This is not over. Dr’s found undiagnosable tissue. Not cancer! But why was it there at all? No one knows. I feel as though it is coming back; but slowly. God is in Control.”
Sadly, I went back to John Hopkins multiple times, each time expecting that they would do a resection per my discussion with my surgeons, and each time coming home after a dilation. They did not really ever intend to do a resection for me — they wanted practice for their residents doing dilations. After going under for a resection and waking up with a dilation multiple times, I found out I was unexpectedly pregnant with twins. I almost died twice during pregnancy. I had two emergency dilation surgeries.
After the birth of my twins, I transferred myself to Boston – Massachusetts General Hospital which is Harvard Medial School. Here is truly the best in the field of resections — a thoracic surgeon named Dr. Matheison. He encouraged me to have a resection. We planned a resection, and I finally thought it was going to happen. However, problems with reflux ended up causing me to be sent home once again with just a dilation. Then, I went through a period of rapid weight gain when my thyroid started acting up for a brief period. When I returned to Dr. Matheison, he informed me that he would not do a resection until I lose 40 pounds. This is reasonable, and yet it seems so out of reach. I have been trying for two years to lose that weight. PCOS makes it difficult. Lack of self-control makes it difficult. A sedentary, low-oxygen lifestyle makes it difficult.
In the meantime, I have moved to California and find that periodic trips to Boston are nearly impossible. I have transferred to a doctor here in California who will do my dilations but works with Dr. M in case I should ever get to the point where I can do a resection. This doctor performed my most recent dilation, and it was the first time I did not have days of horrible sore throat pain afterward. Unfortunately, the medication he used to numb me the day before surgery for a “look-see” ended up giving me the most awful, hard headaches I have ever had and those headaches kept coming back for a full week after surgery. I am going back in June of 2012 for another dilation, since my stenosis had been ignored for too long and the surgery could not achieve the diameter needed to give me lasting relief.
You can read about one of the spiritual crisis I have come through during this ongoing battle with Ideopathic Tracheal Stenosis here.
Having just had surgery two weeks ago, I am breathing deeply again. I don’t know how long my breath will last. I don’t know how or when this struggle will end. In any case, I could die tomorrow in a car accident. Having Ideopathic Tracheal Stenosis has made me more aware of my own imminent mortality.