Chronic Illness by the Numbers

Chronic/progressive/terminal illness is incredibly hard to understand if you're not the one living it out day after day. Heck, it's hard to understand even if you are the one that is living it out everyday.

It is so hard to explain to people the process. The ins. The outs. The ups. The downs. The bureaucracy. The advocacy. The pain. The healing. The sorrow. The joy. No one gets it. Not even me.

We try to use the amazingly composed by Christine Miserandino "Spoon Theory" wherein each activity incredibly small or large is compared to costing one spoon and depending on how our disease is acting that day we are only slotted a certain number of spoons. Once we are out of spoons we cannot do anything else that day. This is by far the best illustration in which we (those of us with chronic illnesses) can explain to those without chronic illnesses what it is sort of like to live daily life 24/7 with out enough spoons to get through our days and accomplish our goals and dreams and plans for our lives. This is why we call ourselves spoonies, if you've seen that term thrown around here and there. This is also why I always have a spoon bracelet and spoon ring on, so I always have extra spoons on me to help me get by and keep on going on low spoon days. They are a visual reminder that I am a chronic illness fighter and warrior and I can achieve my dreams, I use the visual reminder of extra spoons to help keep me driven and passionate.

But I digress...

So since beyond the Spoon Theory it is incredibly difficult to understand the daily life and living life with a chronic/progressive/terminal illness, I thought that it might be helpful to help those without chronic illnesses understand us better if they were introduced to chronic illness by the numbers.

I got this idea from a friends Facebook status she posted several weeks ago. When I read her (much shorter, but very emphatic) list I thought in my head 'man, that sure does put it out there for you doesn't it' and thought it was very effective. So I made a more extensive list, and it pertains to me and not her of course. I'm sure I could come up with some more numbers associated with chronic illness but this list is definitely pretty detailed and puts it out there for you. Honestly, while I was looking back through bills and records to make sure there was nothing in here exaggerated at all (in fact I went with months with the lowest costs because I don't always have a high cost month and don't want to) I was blown away myself. Who knew there were so many resources being poured in to little 'ole me. I have always said how grateful I am to have insurance and disability and now I am even more so when I see what I could be having to deal with. So thank you insurance. I know I wish you paid for my TPN, but I think you maxed out on me for other things.

So sit back, relax, and read some statistics of my life of living with chronic/progressive/terminal illnesses and see if you are blown away with how chronic illness affects my life...by the numbers.

• Diagnoses: 23
• Mitral Valve Prolapse, Atrial Septial Defect, Heart Murmur, endometriosis, PCOS, Celiac Disease, Ulcerative Colitis, Dysautonomia (OH, NCS, POTS, and PAF), Ehlers-Danlos Syndrome-Hypermobility Type, Fibromyalgia, Feeding Dysfunction, Gastroparesis, Unspecified Neuromuscular Disorder, Colonic Inertia, Intestinal Dysmotility, Erosive Esophagitis, GERD, Migraines, Autonomic Neuropathy, Asperger's Syndrome, Anxiety/Medical PTSD, Anemia of Chronic Disease, and Mitochondrial Disease (complex I, III, and IV)
• The amount of time it takes me to get ready if I want to leave the house: Between 1 and 1,5 hours.
•  It takes a long time to unhook from my TPN and/or my tube feeding, put hydroseal over my PICC line, get in the shower, get clean with the water at just the right temperature so it's not too cold or hot to trigger me passing out, getting out and getting dressed, doing my hair without passing out, cleaning my tube site, fixing my PICC line site up, hooking back up to my tube feed and/or my TPN, administering any meds I may have to take, getting all the emergency supplies together I may need while I'm out and packing the meds I may need while I'm out up.

• The number of doctors I have: 22
• PCP, GYN, 2 Neurologists, Neurosurgeon, General Surgeon, Anesthesiologist, Interventional Radiologist, 2 GI's, Pulmonologist, Rheumatologist, Cardiologist, 2 ENTs, Psychologist, Opthamologist, Wound Care doctor, Dermatologist, Allergist, Pain Management Physician, and a Biochemical Geneticist/Metabolic Specialist, 
• The number of 'support staff' health professionals I have: 14
• 2 home health nurses, OT (occupational therapist), PT (physical therapist), counselor, 4 different RD's (registered dietitians), 2 pharmacists (1 for TPN--total parenteral nutrition-- and 1 for compounded medications), a DME (durable medical equipment) provider for my wheelchair needs and any other medical equipment I may need, a case manager, and a social worker. 
• Number of doctor's appointments I have had so far this year: 16
• Time spent driving to and from Indianapolis to get to doctor's appointments: 32 hours
• Number of procedures, tests, and surgeries I've had so far this year: 5
• J-tube changed, colonoscopy, MRI, CT scan, sinus/tonsil/adenoid surgery
• Number of OT/PT/counseling appointments I've had so far this year: 38
• Cost of medical care/appointments per month: $12,536
• Cost of medical care/appointments per year: $150,432
• The number of times I have been admitted to the hospital for more than 48 hours: 19
• The number of times I have been admitted to the hospital this year and the number of days: I have been admitted to the hospital 2 times so far this year for a total of 9 days.
• The number of years I have either been admitted or had a doctor's appointment on my birthday: 7
• The number of procedures I have had done: around 100
• 8 colonoscopies, 5 EGD's, 2 barium swallows, 1 small intestine biopsy, 1 stomach muscle biopsy, 1 thigh muscle biopsy, 3 skin biopsies, 2 NJ tube placements, 6 J tube changes, 4 EMG's and Nerve Conduction studies, 3 EEG's, around 30 or so EKG's (they are never ending and often), around 10 echocardiograms, 8 MRI's, and 16 CT scans.
• The number of surgeries I have had: 4
• 1 ovarian cyst removal, 1 ovarian cyst removal and endometrial ablation, placement of J tube and port, and tonsilectomy/adenoidectomy/functional endoscopic sinus surgery
• The number of implantable devices I have in my body: 3
• Port in my right chest, PICC line in my right arm. Both of these have catheters that go through my veins towards my heart and sit right next to my heart and release what is pushed through them. That is why it is imperative sterile procedures are used to minimize risk of infection to prevent the blood going straight into the heart from getting infected. 
• J tube. A feeding tube in my Jejunum that bypasses my stomach because ny stomach only has 4% nerve and muscle functioning so when I eat food doesn't pass through like it is supposed to, so we avoid my stomach all together. 
• The number of scars I have from surgery: 11

• The number of medications I take: 26
• Number of medication doses per day: 53 doses per day + 1 patch that is changed weekly, 1 biologic infusion that is done every 5 weeks, and 1 injection that is done every 3 months.
• Amount of time spent administering/preparing medications per day: at least 3 hours, if it is Sunday (the day I switch all my syringes and supplies out because I use them for one week) it takes around 4.5 hours.
• Cost of medications per month: $3,726.25
• Cost of medications per year: $44,715
• Cost of OTC medications (self purchased) per month: $319
• I often have to do without some of these because I can't afford to pay this much per month on disability and that isn't that good because most of these OTC meds are part of my 'mito cocktail' the only treatment there is for my mitochondrial disease.
• Cost of OTC medications (self purchased) per year: $3,828
• Cost of miscellaneous medical supplies (self purchased) per month: $46
• Cost of miscellaneous medical supplies (self purchased) per year: $552
• This includes syringes for my medications for tube feeding and things like gauze and coban and other dressing type things as well. There are other miscellaneous expenditures randomly but these things are purchased monthly for sure.

• Number of Remicade infusions received so far this year: 1. but should be 5 if I was allowed to get them because I didn't have a recurrent sinus infection that was messing with my immune system and I was not allowed to receive my Remicade. Hopefully I can again in about 3 more weeks.
• Number of Remicade infusions needed per year: 10
• Price of Remicade infusions: $6,421
• Price of Remicade infusions per year: $64,210
• Number of Normal Saline infusions received per year: 104
• Number of Normal Saline infusions received so far this year: 43
• Liters of Normal Saline received per week: 4
• Liters of Normal Saline received per month: 16
• Liters of Normal Saline received per year: 208
• Price of Normal Saline infusions: $209
• Price of Normal Saline infusions per year: $21,736

• Daily volume of tube feeding formula consumed: 1250 mL or 1.25 Liters
• Yearly volume of tube feeding formula consumed: 456,250 mL or 456.25 Liters
• Daily amount of sterile water and Gatorade for hydration: 1250 mL or 1.25 Liters
• 1 cap full of powdered Gatorade is mixed with 1250 mL of sterile water to produce the solution that I use to flush my feeding tube with every day for hydration purposes,
• Cost of tube feeding per month: $1,403
• Cost of tube feeding per year: $16,836
• Daily volume of TPN: 1560 mL or 1.56 Liters
• Yearly volume of TPN: 569,400 mL or 569.4 Liters
• Monthly cost of TPN: $1,500
• Currently paying for this out of pocket. Hopefully me paying out of pocket is temporary or me being on TPN is temporary. This alone exceeds my annual income by around $6,500.
• Yearly cost of TPN: $18,000

• Total estimated annual cost of my medical care: $302,891
• Medical care appointments per year: $150, 432
• Medications per year: $44,715
• OTC medications purchased per year: $3,828
• Miscellaneous medical supplies purchased per year: $552
• Annual cost of Remicade: $64,210
• Annual cost of Normal Saline Infusions: $21,736
• Averaged price of tube feeding/TPN (on one or the other, not both) annually: $17,418
• Surviving all this on a daily basis: ****PRICELESS****