I have a full time job. Two of them, actually. My first is as a program analyst; I get paid to do it. My second is as Primary Ciliary Dyskinesia (PCD) patient with bronchiectasis. It’s not the kind of job that pays well or has great benefits. In fact, maybe it should be called my anti-job. It takes a lot of my time, costs me money, and doesn’t have an optimistic retirement plan.
Most people with chronic illnesses find themselves in the same boat. As if being sick, tired, in pain, etc. isn’t enough, having a chronic illness is a time robber in many ways you may not have considered.
First, there’s the illness itself. Many patients find themselves unable to keep up with their healthy counterparts. It’s not from laziness. How much do you think you would accomplish each day if you had 40% lung capacity? Most people are miserable when they are hit by allergies or are stuffed up from a cold. For those living with PCD, that is pretty much what every day is like for us. It takes extra time just to get around, climb stairs and even shop. I guess the best way to explain it is when I was younger, I could get a lot done in a day/24 hours. Now, though, I feel like my day has less than 24 hours. Maybe only 20 hours. Even 8 hours of sleep isn’t enough to keep me from feeling exhausted most days.
Appointments, Procedures and Hospitalizations
Most people with a chronic illness need numerous doctor’s appointments, procedures and sometimes hospital stays. Thanks to advancements in medicine and a flexible work schedule, I can still work and be active when I require intravenous (IV) antibiotics for a lung infection. I get a peripherally inserted central catheter (PICC) line placed, and then a home IV company delivers my medicines to my home. If this wasn’t an option, I’d be spending at least 4 weeks every year in the hospital at best, and 12 or more weeks at worst. There are some people who don’t have the option of home IVs. Either they are too sick, or their insurance won’t cover the home care.
Although being able to do IVs at home is a blessing, it requires planning for extra time and care. The IV site can’t get wet, which means protecting it by some means when bathing. When the site is in the arm, a plastic bag can usually be used, depending on the IV placement. It takes time to cover the IV properly. Bathing with a wrapped arm or hand has its own challenges—let’s just say that bathing (with the added preparations) takes about twice as long as usual.
Most of the IVs I do come in a little pressurized ball. This enable me to still be mobile while doing the IV. Some though, can only be dispensed through a gravity drip bag. This means being stuck in one location for 30-60 minutes, while receiving the dose.
There’s also the IV schedule. If I’m on a antibiotic I have to take every six hours, that means I barely get any sleep. From the time I unplug from one dose, get to bed, wake up about an hour before the next dose to take it out of the refrigerator so it can warm up before it’s time to plug in again, I’m lucky to get four and a half hours of sleep. Even when antibiotics are every eight hours, I’m only getting about six hours of sleep at a time.
It uses up about an hour and a half per day to take my nebulized breathing treatments and my oral medications. Treatments do vary for PCD patients. Some need upwards of 4 hours every day to do all their breathing treatments. And that’s when we are at our healthiest. When other treatments are added, like IV or inhaled antibiotics to treat infections, or increased nebulized bronchodilators, this can take another 1-6 hours.
I’m grateful that there are treatments available to help me breathe better and to fight infections. These treatments, though, can lead to other issues. One issue I’ve had since I was in my early 20’s is out-of-the-blue abdominal cramping that usually leads to diarrhea. This is usually triggered by antibiotics and steroids. It takes a lot out of me (pun intended). I am usually too exhausted afterwards to get much done. After 25+ years of this, though, I can usually tell when an episode is about to happen, and with some extra probiotics I can eliminate the eliminations. But not always.
Another issue that all these drugs introduce is the need for more pills. For the issue mentioned above I take a probiotic daily. This has kept my intestines happy for years with just the few triggered flare-ups every now and then. My sister, who has the same lung disease and had a double lung transplant, has had to take insulin shots and high blood pressure medicine to counteract the side effects of some of her antirejection meds.
In January 2013, I was mostly incapacitated for four months because of a reaction to an IV antibiotic. I developed ototoxicity. The best way to describe it is that my brain couldn’t process all the information coming in through my eyes. I couldn’t drive and I had to close my eyes when riding in a car. I couldn’t even walk a straight line. Most of my work is on a computer, and I could only look at the screen for about an hour at a time, a couple hours each day. Luckily, my brain was able to rewire and things are now pretty much back to normal, with only a few issues when I’m tired. I used up a lot of leave during that time, though, and relied on my husband to drive me to the additional appointments that treating this complication created.
Denial of Medications or Equipment
Many chronically ill patients have been denied medications or equipment that their doctor prescribed. Some of it is because the drugs haven’t been specifically tested for the particular disease the patient has. This is a real problem for those with rare diseases, because their disease groups are so small that no pharmaceutical company wants to spend the money required for such a low rate of return (why treat 1,000 patients or fewer when you can make more money off of a disease millions of people have?).
I’ve been denied a drug that has been approved for Cystic Fibrosis (CF) patients with bronchiectasis, but not non-CF bronchiectasis patients (the category I fall into). I have taken this drug and I therefore know that it works for me. But I still get denied because I don’t have CF bronchiectasis. So each time the drug is denied, I have to write an appeal to get it approved. If they don’t approve the first appeal, then I have to appeal it at the next (and final) level.
Another complication and cause for denial of medication is that insurance companies are now using a drug-tiered policy. They want to pay less for medications, and may insist that your doctor prescribes drugs from a less expensive tier. An example is a fellow PCD patient whose doctor prescribed an inhaled steroid called Dulera. The insurance company said it was in a higher-priced tier and the patient would have to use Advair instead. While that may seem minor, the insurance company isn’t allowed to just swap out the drugs, so the patient is simply told he is not approved for the prescribed medication. This is especially frustrating when patients have been on the different medications, and from experience know one works better than the other (or that the lower-tier one may not work at all for them). This then involves more time (and stress) because now the patient has to go back to the doctor to request a different prescription.
This can also occur when switching insurance companies. Another fellow PCD patient changed insurance companies, and when she tried to reorder two of the medications she’d been taking for years, they were both denied. She is on the verge of going on the lung transplant list and doesn’t have the luxury of spending months of back-and-forth with the insurance company to get these important medications. When you only have 24% lung capacity, dropping even just 1% can have severe consequences.
Reviewing Explanations of Benefits (EOBs) and Bills
Then there are all the bills and insurance statements (explanations of benefits) that come from all these appointments, procedures and treatments. Sometimes it feels like I need an accounting degree. I match every bill with every insurance explanation of benefits (EOB). You won’t believe the number of times I’ve been charged too much. Once I also had a medical charge show up on my credit report from a study I was in. The study was supposed to pay for the billed test. Every month when I received the bills I sent them to the head of the study and called the billing department about the mistake. When the bills stopped coming, I incorrectly assumed it was because they’d straightened it out. It has since been corrected, but not after a lot more time on the phone and apparently a couple of years with a negative mark on my credit report.
Insurance Incorrectly Processing EOBs
Unfortunately, part of reviewing the EOBs is to ensure the insurance companies are properly handling claims. Not that I know how everything should be paid out, but I certainly notice if there’s a difference on a regular recurring claim.
My most recent example of this is still going on. My insurance company originally processed and paid for my oxygen claims within about 2 weeks of the receiving each one. This was the practice until September 2015. I called my insurance to see what was going on, and was told they’d implemented a new system and that there was a delay in payments.
I finally received the EOB for September in late December 2015. The numbers were completely different than all the previous EOBs. I called to inquire about this. I was told it had been processed incorrectly and they would reprocess the claim.
To make a long story short, a full year after the oxygen company filed the claim, and with regular calls by me to see what is going on, I am still waiting for my insurance to reprocess the September 2015 claim, along with the October 2015 through March 2016 claims, which were all also incorrectly processed.
As you can see, the chronic illness itself is just the tip of the iceberg. The more appointments, treatments and procedures one needs, the more time it takes to deal with the other associated issues. As if being chronically ill didn’t suck away time on its own, all these other things contribute to shrinking the available time in a day for the basics, let alone anything else. Not to mention that this added stress just exacerbates the original illness, thus perpetuating the cycle. The other side effect is the isolation from friends and family. The time I spend making calls, waiting for doctors or medical tests and doing my daily treatment routines is time away from people I care about and the things I would rather do. It’s surprising I have time to do the full-time job I get paid for.
9 Comments Add yours
Oh my goodness this is so my experience also. While I do not have the same disease (I have IPF) but time spent dealing with the issues you described leave me exhausted! I am constantly involved in one battle or another. No one seems to realize I have a terminal illness and should not be wasting my precious time on these things. Thank you for putting into words the struggle a lot of us have. I know now I am not alone!
Thank you for your kind words. People don’t understand the constant struggle unless they have to do it or have a loved one who with a chronic disease. People look at us out in the world and don’t realize everything that went into getting out the door that day. I’m so sorry you have to deal with all this too.
I never imagined all that you go through! Over the years I have dealt with a number of serious medical problems of my own or my children (pseudotumor cerebri diagnosed in one son when he was 7 months old ultimately requiring a VP shunt when he was 2, low growth hormone in 2 of my 3 sons, a prolactinoma on the pituitary gland of one son, eosinophilic esophagitis in one son, and interstitial cystitis for myself). Yet with all of that combined we have gone through far less than you. Thank you for detailing what it is like to live with PCD.
Wow. Everything you mentioned sounds like so much to deal with. And I think it’s harder when it’s your child going through it.
Mary, you do a remarkable job of trying to describe what it is like to live with PCD. It is so true, as the writer above states, that it is very hard to comprehend what your life is like unless you have a similar chronic illness or live with someone who does. I love your sense of humor; I’m sure that helps you every day. It was a real pleasure to meet you at the PCD conference, and I look forward to seeing you again the future. Keep up your great work of writing and running, in between all the other things you do to stay healthy!
Thank you Janet.
Had no idea what you have had to endure with your disease, and Rebekah as well. You certainly are not a whiner as was evident when we saw you a couple of weeks ago. Kudos to you and Rebekah and anyone else with this challenging disease, for being so brave. Both of you have been, and will continue to be in my prayers. Thinking of you and a big hug to you..Bernie
Boy oh boy, can I relate! I have Kartageners Syndrome, which is basically the same as PCD. I’ve been dealing with it for 59 yrs. Some other affects of the illness for me, has been Anemia, Cateracts at an early age due to inhaled steroids for the Sinuses, loss of hearing, tubes in the ears, then tubes taken out and have to reconstruct the ear canal, abdominoplasty because my stomach muscles were shot from coughing, which in turn caused back problems because I was using my back muscles to cough, bladder sling because my bladder muscles became weak from coughing, neck spasms from coughing, hard to focus and concentrate due to chronic sinus infections/pressure, BAHA hearing aid, which required surgery due to immense draining in my ears. When I had ear tubes had to go to ENT every other month to have the thick infected secretions suctioned out. Seems like I could go on & on! Whew! Oh… I’ve also have had cortisone shots in both shoulders and my hand due to tendinitis and bursitis, plus I’m currently going through 6 weeks (2 times weekly) for my right shoulder bursitis/tendinitis. I had surgery on my left shoulder due to same. Now I can’t be sure that the arthritis/bursitis/tendinitis is a side affect from my illness, but I would not be surprised. Oh and I had a joint implant in my right big toe due to bone on bone and pain of walking …this could be due to steroids taken over the years. I would like to hear what others have experienced due to this chronic disease.
Thank you for sharing your story. My daughter is 11 and was just diagnosed this year. We were just at the conference in San Francisco and I remember you specifically standing up to talk to the children in the room. Being a parent of one of those children I really appreciate what you had to say. You are an inspiration and I wish you all the best. I would love to hear more from you. Thank you kindly, Keloni Liggatt.