Today was the first gene therapy treatment. Dr. Anderson says that it should show during today and tomorrow Ė if it works at all. Iím not allowing myself too much hope, or Iíll be very disappointed.
It worked! Or at least, I think it did. I havenít coughed since yesterday morning. My lungs feel lighter, less obstructed. Itís an incredible feeling, and one I didnít think Iíd ever experience. I go back to the clinic tomorrow to meet with Dr. Anderson to go over the effects.
I didnít do therapy last night.
I spent all of yesterday at the clinic, having various tests performed. Dr. Anderson agrees, she thinks that the treatment has proved successful. I still havenít coughed once since I inhaled the medication.
Dr. Anderson says that Iíll have to go in routinely to receive another treatment, but I donít care. As long as it works . . .
I havenít done therapy since the 29th of March, a full three days ago. I feel perfectly fine Ė no, more than fine. I feel better than I have in years. I am going to call Dr. Phillips, my regular doctor, to tell him that he can cancel the hospital visit scheduled for next week. I certainly donít feel like I need to be admitted.
I go for my second checkup with Dr. Anderson tomorrow.
Iíve been encouraged to keep a record of my health every day in my journal. I didnít tell them that I was already doing it. Itís too incredible not to record.
As each day passes, I feel better and better. This morning, Dr. Anderson reported that my chloride channel is functioning normally again. I should attain the respiratory health of an average person by the end of this week. I am beginning to feel it already Ė the only thing I still do is take the digestive enzymes. Itís like a twenty-pound weight has been lifted from somewhere inside of me, and I never even knew it was there. I can only imagine it as a lung transplant without the trauma.
Today I returned to work. My supervisor approached me at once, concerned with the fact that I had taken several days off of work and was scheduled to be admitted to the hospital next week. I assured him that I was fine, better than fine, and that I would be at work next week after all. He didnít ask questions, and I didnít offer any answers. Iím going to give this a week Ė I donít think anything will go wrong, but I donít want to raise my hopes too high until something more is proven.
Itís Friday, the end of the week, and Dr. Anderson has confirmed the idea that Iíve reached ordinary health. Iím still taking enzymes Ė the pancreotic difficulties remain, even if my lungs are clear Ė and Iíve been given a medication that should prolong the time before I have to have another treatment.
Iím seeing so many changes in my life already, and itís hardly a week after. I can run as well as any other without stopping frequently to cough or catch my breath. Dr. Anderson says that itís worked, and that it should be made widely available soon.
No physical therapy for a week now. . .
My health is wonderful.
There is at this moment a heated debate about the gene therapy method. Dr. Kynzowsky, the head of the Gene Therapy department, has made a startling pronouncement. He says that gene therapy should be made available immediately, with no further tests. To advance his point, he published a journal on it yesterday. He thinks it will be in circulation within the month. Dr. Anderson was violently angry when she heard, and says that he should have waited and done another test. I asked her why, as she had seemed in favor of making it openly available just yesterday.
"Not like he did it," she replied. "Not that soon. Not without a little more thought." She looked uncomfortable then, and refused to meet my gaze.
"What do you mean?" I inquired. "Itís worked, hasnít it?"
Dr. Anderson nodded. "It has, so far," she said.
I narrowed my eyes. "Then why does it need to be tested further?"
She met my gaze squarely then. "There is still a chance of inflammation," she said bluntly. "Although it is slim, your body could still react negatively and try to fight the corrective genes."
My mouth dropped open in surprise. "But you said there werenít any risks," I said, gaping.
"I donít think itís any cause for alarm."
"I do!" I was surprised to find, then, that I was nearly shouting. "How could you not inform me of that? You said that there was no longer a chance . . ." I sank back into my chair, feeling helpless.
"I did not say that," Dr. Anderson replied stiffly. She looked irritated.
"You implied it," I defended. A moment later, fuming with anger, I left the clinic.
I donít think there is any cause for alarm, though, as I think back over it. Itís been nine daysÖ
A compromise has been reached between Dr.s Anderson and Kynzowsky. They are going to wait a bit longer before releasing the therapy method to the public, and test another patient. His name is James Suffolk, and he will have the corrective medication tomorrow.
I refused to go into the clinic today, as I was scheduled to do. I canít forgive Dr. Anderson yet.
I havenít been keeping this journal as faithfully as instructed. Oh well.
Today was interesting. This afternoon I began to feel ill and left work early. When I got home, I was coughing like I havenít coughed for several weeks. Frightened, I did a nebulizer and felt somewhat better. I still feel unwell, though.
Maybe I should contact Dr. Anderson.
I didnít call Dr. Anderson. This morning I woke up feeling better, although I think I must have a cold. Iím coughing still, and I feel a little ill. Oh well. Even gene therapy doesnít make you invincible.
I took sick leave off of work today, I just donít feel like going. Something keeps telling me that I should call Dr. Anderson, but Iím pretty sure I know how it would go.
"Iím feeling sick. Iím afraid that something might be going wrong."
"What are the symptoms?"
"Coughing, a little feverish, short of breathÖ"
"It sounds like you have a cold, Liza. That has nothing to do with gene therapy."
Then sheíd hang up, and I still wouldnít know what this is. So I donít think Iíll call her. At least, not yet.
Yesterday, before I started feeling poorly, I received a letter from James Suffolk Ė the other test patient for gene therapy. Apparently Dr. Anderson pressed him to contact me, though I have no idea why. Iím sure itís to further her scientific research in some way. She has few other interests. It was a short letter, and to the point. Just an introductory paragraph or two, and the statement that heíd just received his first corrective treatment. He seems younger than I am Ė I think heís still in his late teens Ė and heís amazed that one puff on an inhaler can "cure" Cystic Fibrosis. He thinks itís great. He practically worships Dr. Anderson, too Ė that I could tell just through the letter. James wrote that she was "hardworking, caring and sympathetic". He has a lot to learn.
Iím feeling worse today, much worse. I must have come down with a bad case of the flu, or bronchitis Ė or both. Iíve got a cough again, and itís worse than before my first corrective treatment. At first I thought perhaps it had worn off more quickly than predicted, but then why the fever? I am going to call Dr. Anderson this afternoon.
I called Dr. Anderson. She was cool and aloof, just as I had imagined, and maintained that I had an ordinary illness until I practically demanded to be seen at her clinic. I am shocked at her lack of caring Ė youíd think that she, as the doctor, would be the first to suggest that I come in and be tested. Finally, she grudgingly admitted that I should come in immediately and check it out.
My illness has accelerated. Dr. Anderson refuses to see anything wrong with me, and so I have contacted Dr. Mayne, her colleague. Sheíll be furious when she knows that I worked around her; she seems determined to believe her experiment a success whatever the consequences.
Dr. Mayne agreed to see me at ten this morning Ė about an hour from now. He seemed concerned and readily agreed when I asked if he could look at me. I hold on to the hope that it is a passing flu, but Iím not so sureÖ
I went to see Dr. Mayne as scheduled today. He was very cheerful and helpful, but grew grave when the test results were brought to us.
"Liza, may I speak frankly?" he asked somberly as he surveyed the papers. I nodded, fearing the worst. I got it.
"It looks as if youíre experiencing a regression," he said, looking at me steadily. "Although the therapy worked initially, your body has decided to oust the foreign material after all. Thereís severe inflammation in your lungs, and your body is trying with all its might to kill the delivery system."
"The what?" I asked, confused. Though it had been performed on my own body, I still was confused in the operation of gene therapy.
"An adnovirus was used to deliver the corrective therapy," Dr. Mayne explained readily. "The virus key was turned, and so it didnít affect that. However, your body obviously saw it as a cold, and is doing its best to fight it as it usually would."
"So what does this mean?" I heard my voice asking. By that time, I had stopped mentally functioning and was surprised that I still had the wherewithal to speak.
Dr. Mayne sighed. "It will, in effect, undo what weíve tried to do. This doesnít prove that the gene therapy doesnít work, it only proves that your body wasnít willing to receive itÖ"
"So I can never do it again?" I asked, disbelief in my voice.
"It would not be wise to make a second attempt, if youíve already had one failure."
The word failure rang out through the following silence like a death knell.
"What about others?" I asked, trying to fill the silence with my feeble noise. "James Suffolk? What about him?"
"So far the results in James have been positive," Dr. Mayne said matter-of-factly. "It is not likely that he will experience any adverse side effects."
After a few more moments of talk, I thanked him, grabbed my bag, and fled the clinic.
I am now writing this from the hospital; I was admitted yesterday. My conditions worsened to the point where I had regressed beyond my starting place, and I have been admitted for a four-week cycle of antibiotics. I havenít been able to talk to Dr. Anderson for days. I think I hate her.
Still in the hospital.
I got a letter from James Suffolk today. He has just learned of my situation, and sent his teenaged condolences. "Dr. Anderson as well is very sorry," he writes innocently. "We are all hoping you will recover soon." The note said nothing of his own treatment, but I know from correspondence with Dr. Mayne that it has been completely successful. I canít help but feel a little bitter toward himÖ
I called the office today and resigned my job. If my health continues in this vein, I will have to look for other alternatives.
Still in the hospital.
Spring is beginning outside. The daffodils and tulips and pansies are beginning to peek up from the ground, thrusting tentative little blossoms skywards. The grass is growing with renewed vigor, making a heavy load for landscapers. The trees are beginning to bud Ė some are already in leaf, with an impudent bloom or two peeking from the green foliage as if to signal the onset of the warmer seasons. Do they know that in six or seven months a frost will come and kill them all? That theyíll experience total regression, back to the point they started from Ė or worse? Probably not. After all, I didnít.