Confessions of a Recovering Chronic Patient
part one - the fall
Up to the age of 50, I had my problems, but ya fix it and go on. Double spinal fusion, cataracts, gall bladder removed and a non-cancerous tumor on an ovary. Okay, these things happen. But it was asthma that destroyed me.
I developed asthma when pregnant with my daughter, but I figured that the pregnancy, plus a very messy divorce, were adding hormones and stress to the mix. Women are constantly being told to grin and bear pain, from the time of their first menstrual cramps to child birth. My mother was no exception. Sore throat? Fever? Unless you vomit, you go to school! I would sometimes go to school just so the school nurse would send me home.
After a few years of living in the lush environment of southeastern Connecticut, my allergies to mold, mildew and rabbits started becoming obvious, and ended with me spending a week in the hospital three to four times every year. Previously, I could get a shot of adrenaline and the whole episode would be over. But after the age of 40, the brilliant medicos will not administer adrenaline because it taxes the heart. Well, guys, so do the medical bills! And I couldn’t convince them that I have the heart of a Tibetan Yak.
So they would give me a breathing tube with albuterol in it, which is like trying to bring down an angry rhino with a wet noodle. Hence, admission, and another week lost in the white refrigerator. I got to know all the nurses in the pulmonary wing by name and family.
One time I was admitted into the ICU, but in 2-3 days was ready to move to ‘my crew’, but there were no regular beds available, so I stayed there until my release. That was one of the more interesting visits. At one point, we were locked down – seems someone was playing cops and robbers with real guns outside the hospital.
As I start recovering, I try walking to see how well my lungs are behaving. While in the ICU I did this and stopped at the nurses’ desk to ask a question. I thought the poor girl was going to have her own crisis – she was not accustomed to her patients walking and talking! This started an ‘afternoon tea’, when the nurses would hang out in my room and chat, happy to have a patient who was not comatose.
Thus began my career as a chronic patient.
part two -- down into the pit
When you reach the age of 50, doctors decide that you have one foot in the grave and the other foot on a banana peel. All of a sudden you need dozens of annual tests – colonoscopy, pap smear, prostrate check, mammogram, EKG, sugar test, bone density and CBC. If you are an executive, your company may send you for all this. If not, and you show up at the doctor’s office for a cough, they will rope you into all the tests they can get past insurance – they will even make the appointments with specialists to ensure you don’t cop out. According to the doctors, you are on the verge of falling completely apart.
By this age, my asthma was pretty chronic. I kept telling the doctors it’s allergies – I even had identified some of the triggers. But they wouldn’t even entertain the idea until I’d quit smoking for six months. In southeastern Connecticut, the doctors don’t believe in allergies; when I finally insisted on being tested, I was sent to a pediatrician who also does allergy testing, where I was told I don’t have any reactions.
I was spending 7-8 days in the hospital at least four times a year. The only treatment other than oxygen was to pump me full of the soooooooper steroid, solumedrol. I would be sent home with a taper prescription of prednisone. And usually a dose of antibiotic, assuming the bronchitis may be contagious. My pulmonologist even gave me an open scrip for prednisone so I could dose myself and hopefully prevent a hospital visit – also, to take when traveling so I wouldn’t need to trust foreign hospitals. Once, I spent a whole year on a low dose of prednisone.
To strengthen my belief that it was allergic asthma, I even identified the times of the year involved – November (I spent quite a few Thanksgivings in the hospital), February, April and May. I had regular bouts of breathing difficulty, so a true asthma attack would creep up on me until I had blue lips. I got to know the ambulance crews and EMTs on a first-name basis. I never did figure out the right time to go to the emergency room until it was too late.
When I asked why I was still getting asthma, the answer was that I have COPD. So, what is COPD? I researched it and Chronic Obstructive Pulmonary Disease covers a multitude of not-yet-diagnosed breathing problems and includes chronic bronchitis and emphysema. Scary. I did have bronchitis a lot. But then, congestion is a typical allergic reaction.
I was sent to pulmonary rehabilitation, which convinced me things could be a lot worse, and it is possible to exercise with asthma – I was piling on weight at the rate of ten pounds a year.
The side effects of steroids followed me everywhere – a lump on the back of my neck, dark “age spots” all over, shaking, a “moon face” (hides wrinkles but made me look even fatter), mental confusion at times, and erratic emotions.
The one job I loved (and got paid well for) was in a building that was known for harboring mold, but the company would not spend the money to clean it out. I couldn’t change buildings because my entire department was housed there.
The biggest problem was that neither I nor the medics ever looked past asthma to diagnose a problem. And that soooper steroid masks any other symptoms. Once I was in the hospital, 6 days a crack, three times in six weeks. Finally, a pulmonologist came in and said she didn’t think it was just asthma, and ordered a CAT scan. Son of a gun – I had walking pneumonia.
By the time I was 60, I’d started turning gray, and looked 20 years older than I was, I felt sick and weakly all the time, and lost most interest in a life so limited. The pulmonologist was pushing for years for me to retire, and finally it came to that. I went on Social Security Disability. I couldn’t go up the stairs to my second-floor living area; I had to call the neighbors to have their boys carry in the groceries. I gave my dog to my mother because I couldn’t go downstairs to let him out. Over $100,000.00 in medical bills put me into bankruptcy, and the SSD stipend wouldn’t cover my mortgage, so I ended up losing my home of 30 years to foreclosure.
part three - starting to crawl out of the abyss
In 2008, at the age of 62, with no home and a very limited income, I moved to western New York for two reasons – I could afford to live there, and my son’s family was nearby; my daughter had left my home with her family to live in Maine. The day I arrived, I ended up in the emergency room with asthma, but thankfully didn’t get admitted. Since I showed up with only Medicare coverage, and no medical support in the area, Rochester General Hospital and its complex took over my health care.
When I looked in a mirror that year, a practice I never had, I saw an old, beaten woman who was aged beyond her years. I was 70 pounds overweight yet still had an aged face. Twenty years of steroid treatments had destroyed my teeth – they had started just breaking off; and my immunologic system was of course seriously deficient.
But what a difference in western New York. They do believe in allergies, and the first thing they did was put me under the care of an allergist. Curiously, patch tests did show allergies this time – lots of them. The allergist started weekly shots, a different one in each arm, and some new medications that made a difference. The RGH system would hound me to get regular tests such as mammograms and pap smears, but as they showed up clean, they were no longer required yearly, but rather every 5 years. A new steroid was administered, and a lot of preventative monitoring and adjustment eased my life down to 2-3 visits to the hospital a year. They attacked not just symptoms but causes, and things kept improving. The immunodeficiency was addressed with new treatments.
When the allergist had done as much as he could, he referred me over to a pulmonologist, another young and well-read person. She convinced me that I did not have COPD – CT scans of my lungs indicate no irregularities at all. New research indicated that despite the fact that I never had heartburn, acid reflux disease can trigger asthma. There also appears to be a connection between acid reflux and dental health. The pulmonologist added a few pills, then sent me to an ENT man, who found polyps on my larynx which needed removal. The ENT and a gastroenterologist, the next specialists to be called in, added more medications.
Sadly, General Practitioners are so in demand that it took me four years to get one. So the head of the RGH outpatient clinic and my specialists were handling the everyday situations like cholesterol and diabetes II medications.
The good news – After 4-1/2 years in western New York, I would spend over a year without hospitalization. The bad news – I was on fourteen pills a day, plus oxygen overnight, and three nebulizer medications a day. And my entire social life was visiting clinics, doctors and nurses several times a week. Despite a few bouts of 15-pound weight gains due to temporary steroid use, I’d still managed to lose a net thirty pounds. A1C tests over three years were under “7”, indicating that diabetes II was ‘under control’, probably due directly to the weight loss and indirectly to a drop in steroid use. Inhalers and nebulizers are still loaded with steroids, but these go directly to the lungs, so a lot of systemic side effects are avoided.
The bad news – my regular routine was 14 pills a day, 3 nebulizer drugs a day, oxygen at night, inhalers 4-5 times a day; Xolair shots twice a month, IVIg infusions once a month, and those allergy shots eventually becoming monthly. Travelling was a horror. At this age, my skin wasn’t as elastic, so the weight loss made me look older and more worn out. During this period my mother had a stroke, then lapsed into a slow dementia. I ended up staying with her in Connecticut for months. But I couldn’t get the shots I needed while there. Eventually I had to return to New York for my own care, and arrange for Mom’s care in Connecticut. That was a very tough decision, one I question every day since.
One of the reasons that I was on so many drugs is because every specialist would add a couple of medications. If you prescribe two meds and things improve, how do you know which one helped? Their solution was to keep me on them all rather than check to see if any of them were unnecessary.
The cost of some of these new and wondrous drugs even forced me to change insurance companies to one which is more amenable to the type of medications I had to take. The patient’s copay for these drugs was still between $2,000 and $3,000 a month. Ever see those drug ads that say if you can’t afford such-and-such a drug, contact them? Wait till you find out what kinds of hoops they make you go through, only to sigh that they ran out of funds. Sorry, Charlie.
Well, I guess you can either have your health or your wealth. I’d learned that health was more important, but I missed having a life outside of my own health care. Time to take stock and take control of myself.
part four - revolution and recovery
This past summer, I started taking stock. I was feeling pretty good, except for the side effects of the drugs and swiftly rising medical bills. Medicaid and Medicare decided that, at 150% of the poverty level, I was far too rich for any financial assistance with my medical bills; co-pays, premiums and drug costs were now totally mine to bear, except for one grant worth $50/month; all treatments had reached their pinnacle. I’d been diagnosed with asthma, allergies, diabetes II and acid reflux disease, all well medicated.
On the upside, it had been a year since I saw a hospital or even the inside of an emergency room. I have the heart of a Tibetan yak, and no signs of arthritis, so I was physically ahead of others of my age. My attitude had become to think of myself as an old woman, especially while watching my mother deteriorate into dementia.
So the question on my mind was – continue with nothing but nurses and clinics for a social life, write out my will and wait to rot away? Or follow my instincts and my bucket list and start living again? I chose the latter, with a little encouragement from my dear friend Bonnie.
I started noticing that if I missed meds due to lack of money or a cold, I no longer felt a relapse occur. I would travel to my mother’s house without all the entrapments of oxygen bottles, nebulizers and pill dispensers. Originally, within two to five days of arriving in Connecticut, I used to be in the hospital with an asthma attack; no more. So things seem to be improving. I could snuggle with a cat and walk in the rain without so much as a sniffle.
I’d already started living a little. I returned to my love of writing and started publishing online. I joined a card-and-game trio who meet in the ‘clubhouse’ of my community once a week. Once we got over the ailments review, there arose sharp minds still involved in life. Where my mother and I used to solve the world’s problems each week, this chore turned to my game mates. I learned that age does not require one to fall apart, as I was the youngest. And they are surprisingly tolerant of my slightly outrageous thoughts and actions. I also took a ride on a zip line at a carnival.
The arrangement with me living in New York while my daughter was caretaker for my mother always bothered my conscience. But by this summer, I realized that it was alright – I couldn’t handle my mother and her big house, and my daughter was adapting well as caretaker. So after three years, I finally accepted the arrangement as being the right one. This freed me and my conscience to pursue life again.
It’s hard to fight the inertia of the last four years. So I made commitments. I decided to go to the 50th high school reunion. I entered with trepidation (and an hour of lost time wandering no-longer-familiar streets), but in the end I was glad I went, and sorry I’d missed the previous ones. This one-night affair gave me an excuse to crash at Bonnie’s house in Jamesport; I hadn’t seen her in seven years. Both visits let me know I can still enjoy being “out”.
So how can I go travelling (within my financial limits) when I am getting shots every two weeks, and can pack only a week’s pills at a time, and devoting money and time to the Great Medical Institution?
Time to become my own doctor, depending on my pre-med degree, my insatiable research, and above all my gut instinct to guide me. These traits have saved me from wrong medications in the past.
During all the convolutions, the interdependence of the illnesses diagnosed was the heart of the confusion. But now I knew that the asthma was decidedly allergic, exacerbated by the acid reflux. So it was time to pull back on the COPD-related work – my lungs do not have emphysema, and I don’t have chronic bronchitis as long as the allergies are in check. So I stopped the azithromycin pills and the $100-a-month nebulizer treatment that did not appear to have any effect. No long-term medications had changed anything – Brovana, Advair, Simbicort, and so on (and they ALL had been tried). I notified the pulmonologist of the change, with no repercussions.
September 2013. Two months off the nebulizer drug. One year since hospitalization of any sort. A year without systemic steroids. The diabetes A1C test had been normal for two years running. I’d lost a net of forty pounds since coming to New York, due to low income and stomach problems from acid reflux. I say ‘net’ because this included three or four 15-pound gains/losses due to steroid use.
By now I had been writing for about six months, and this seemed to cause my old self to re-emerge after being killed during my marriage. Since the illnesses and medications were so interrelated, it was hard to separate them. So I decided the only thing to do was drop all the fifteen pills a day at once. This included multi vitamins and calcium (asthma medications eat up your calcium). Then I figured I could add back meds as I saw a need for them. My allergist later said he would never have the kahunas to do this, or ask anyone to do it, but he liked my nerve (and agreed to stop the pill he had prescribed). I joined a seniors glee club – always loved to sing, but the polyps cut one of my two octaves off my range. I waited and watched for three months.
No more allergy symptoms! No more asthma symptoms! I ate whatever I pleased (keeping in mind slightly high cholesterol and acid reflux.) I tested myself weekly for pulse, oxygen levels, sugar and lung capacity. The results would make Oprah weep – everything still under control!!
I had only one chronic problem – my lung capacity is still about 30% of what it should be. This was apparently not due to asthma, since my oxygen exchange is always 94-97%. I came to the conclusion that the bronchioles are not expanding enough to allow good intake, especially when I am exercising. I’m not surprised. I spent eight years in a chemistry lab with an obsolescent hood, exposing me to a plethora of contaminants. Then during the decades of assumed-asthma problems, I was intubated a minimum of twice – I had to stay conscious to tell the ER to use a bi-pap instead of intubation, and I didn’t always manage that. And my asthma attacks for thirty years were extremely severe, taxing my lungs to work at all. This apparently left me with scar tissue in the bronchiole area. That’s probably permanent – but easily treated with a shot of albuterol either from an inhaler or a nebulizer. Not to worry – I had attended a six-week pulmonary rehab session, and knew shortcuts, exercises and approaches. By going back to them, I am now increasing the weekly readings for the peak flow and decimeter.
By January 2014 I was feeling great, so I scraped up enough money to fly to Florida for a few days to attend a family wedding. No meds, only an inhaler. Finally starting to get my traveling dream started. I clean snow off the car, wander around the store, and go up and down stairs without even thinking about it.
Time for Revolution Number two. I went to the allergist to see if I can cut out the eight needles a month I take. I had an IgG test taken after an infusion, since I am convinced that my immunosuppression was a result of 20 years of steroids, and not necessarily a permanent condition. I broke the news to my allergist – hadn’t taken Zyflo pills (four horse pills a day) for four months; no allergy symptoms; asthma is definitely allergic. The allergy shot protocol ends after 3-5 years of maintenance; my three years would be up in May and I wanted off. He agreed. I was taking Xolair shots every two weeks; Xolair is very expensive but I did get a grant to cover my copay. Xolair fights allergies by attacking leucoteins, which trigger IgE, the allergy immunoglobulin. The allergist wasn’t ready to give those up, unfortunately. As for the IgG infusions (3-4 hours on a drip of other people’s immunoglobulins every month), he was also loathe to stop those because there’s such a flu epidemic all over the country. But he did agree to retest the Igs. The retest confirmed – I am above the proper range on Igs, so he gave me the option of adjusting the infusions and constantly testing – either spread the infusions out to every six weeks instead of every four, or cut the dosage down. I opted for the latter and he agreed to it. So I may not have cut out all the needles, but there is light at the end of this tunnel.
And now I will begin the final Revolution, number three. Fortunately the medical system to which I belong posts all clinical test results for me to see as well as all the doctors. It also allows me to send urgent and non-urgent messages to my doctors, and get their responses, with no cost. So after six months of this medicine-free regimen, I will contact my GP and request that she order a general blood test for a CBC (if allergies are under control, my white count should be normal), and A1C (fasting sugars have been reading consistently under 120, so the diabetes II may have been beaten by weight loss and lack of steroids) and a lipids panel (I may be wreaking havoc with cholesterol by relying only on diet, but then I don’t know how much cholesterol counts have been affected by the drugs I’ve been on.) My blood pressure is historically textbook perfect; it only rises if I’m sick, and all the office visits have not indicated any change, which indicates I may have hit the right track. Hopefully I will still be losing weight – I still want to lose 30 pounds and see if I can find that waist I miss so much.
Once the test results are in, I’ll meet with the GP and we can review my revolution and the fact that it worked, and see if there are any medications I should start up again. That should put me back to the condition I was in thirty years ago, and I will be fit enough to live like I did thirty years ago.
© 2014 Bonnie-Jean Rohner