This started out as an IAN post, but I realized I had too much to say, so decided to turn it into a diary. My lungs have not been happy for a few days, and this time it wants to go into Bronchitis (I have enough experience by now to know the signs). I've been doing more and more nebulizer treatments over the past few days. Yesterday I did two doubles at home and two singles at home before 3pm. My last double was at 2pm, and then we sat down to watch Sleepy Hollow on Demand because Caedy missed it. It's a one hour show, and through it my lungs started to get worse and worse until by the end of that hour I was coughing and wheezing badly enough to call 911. This is the second time this month.
Some background info: I've had asthma since I was 15. I've never smoked but my father was a heavy smoker up north (think traveling in the car with the windows up in winter + frequent road trips), and I worked in drive thru's for years exposed both to second hand smoke and LOTS of car exhaust. I also have low alpha-1 antitripsin, not super low but enough not to help. I had hyperthyroid for many years that was unresponsive to treatment and by the end of that I was going into thyroid storm several times a month, with seizures. Finally they irradiated me, and that's been mostly under control since then (slightly elevated some months, slightly low others). I was diagnosed with moderate COPD (chronic obstructive pulmonary disease) in August of 2010, after a year or two of multiple bouts of pneumonia. I also have an undiagnosed and untreated seizure disorder because with a neurologist no one will touch it (I had a referral and two weeks before the appointment my medicaid poofed). I'm also borderline anemic, but my blood work on that (ER blood work but still) has been pretty good lately so I'm managing that well on my own so far.
Health insurance status: I had good health insurance for a few years in my early 20's while I was working as a CNA. I had medicaid during and around two pregnancies, and while I was out of work due to the hyperthroid seizures getting bad (you try working at McDonalds while having 10-30 seizures a day). Then I had it for two years when my COPD was first diagnosed (after a long fight and writing to Alan Grayson, after which things got moving). I've had no medicaid for over a year now. I had no insurance for much of my adult life.
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Ok, when they bumped me off medicaid because my other half's disability changed to 'survivor' benefits when his dad retired and went up $400, they put me on a program called "medically needy". This plan is confusing but essentially works like this: They give you a number you have to owe more then every month in order to qualify for medicaid for the rest of that month. My number is currently $898 dollars. I don't have to pay that, I just have to rack up more than that in medical bills before ANYTHING is covered for that month. About the only way to do that is an ER visit. So If I have to go to the ER I'm covered for the rest of the month. This year I've been in the hospital 4 times so far (I may be missing one in January but I can't remember if that was late December or early January, so I'm going with the 4 I remember).
So my first visit to the hospital in March, was a 3 day admission. The bill for that visit, not counting radiology and doctors which weren't included on this statement was: $5, 610.51
The second visit in August was what I call a "catch and release". I went into the ER, they got me stable with IV meds, mega breathing treatments and oxygen and made sure I didn't have pneumonia and sent me home again. That visit came to $881.92. Ambulance costs came to $190. So a total of $1071.92.
This was a medicaid statement, this is what they paid not what I originally owed.
I just got a bill for my ER visit on November 11. Also a catch and release, and they tried to put it through before my medicaid cleared, so I'll have to call next week and make sure they put it through again. It was a whopping $4,300 I'm pretty sure what Medicaid will pay will be closer to the last time so about $1071.
Yesterday evening I was in the ER again, another catch and release, though more serious, they gave me the option of being admitted if I thought I needed it. I chose to go home because.. Thanksgiving. I can always go back in if I tank again. But I think with rest and the new meds they put me on I should be ok. I'm not going to overdo it, mostly supervisory role for Thanksgiving dinner, Caedy will be doing most of the cooking. But I didn't want to be sitting in a hospital bed waiting for a doctor to get done with his Thanksgiving to tell me if I can go home to mine. And a lot of those doctors seem to do their rounds in the evening on a typical day in my experience with this hospital so far.
Yesterday my chest x-ray showed no pneumonia (thank god!) but it did show that my heart is more enlarged than it was. They ran a test for congestive heart failure and that, thankfully came back negative. If it hadn't I'd still be in the hospital. I wouldn't have gone home so they could run tests, figure out meds, etc. I'd want to talk to a cardiologist and with my current lack of real insurance situation the ONLY way to do that is be admitted, because there was no way I was getting an appointment with a cardiologist before November 30.
I've done some research though, and without the benefit of a medical opinion, I have a potential explanation. My heart has been tested many times, between the frequent thyroid storms, two pulmonary embolisms that presented as chest pain, and multiple EKG's because of my thyroid and elevated BP during respiratory crisis. It's always tested fine strong and healthy. No signs of heart disease, though there is some family history there. But my heart has been through a lot of crap not caused by anything its own fault. I am over weight, thank you long term steroid use with minimized physical capability secondary to COPD. But not dangerously so and that's been at a higher but stable level for a couple of years now. Not going up, not major fluctuations. I have some lower extremity edema, but that's under control at least and not severe.
COPD can cause pulmonary hypertension. I haven't been officially diagnosed with this, but I haven't seen my pulmonary specialist in over a year due to the lack of medicaid. I do have symptoms of it and it has been an ongoing concern in my brain in the past 6 months ago, because something isn't right and my copd/shortness of breath have been worse (for example I can't sit back in a chair anymore for more than a few minutes, I catch myself in the COPD leaning forward position way more often than I'm comfortable with).
The causes listed on the mayo clinic web page for enlarged heart include:
High blood pressure in the artery connecting your heart and lungs (pulmonary hypertension). If you have pulmonary hypertension, your heart may need to pump harder to move blood between your lungs and your heart. As a result, the right side of your heart may enlarge.
Low red blood cell count (anemia). Anemia is a condition in which there aren't enough healthy red blood cells to carry adequate oxygen to your tissues. Left untreated, chronic anemia can lead to a rapid or irregular heartbeat. Your heart must pump more blood to make up for the lack of oxygen in the blood when you're anemic. Rarely, your heart can enlarge if you have anemia for a long time and you don't seek treatment.
Thyroid disorders. Both an underactive thyroid gland (hypothyroidism) and an overactive thyroid gland (hyperthyroidism) can lead to heart problems, including an enlarged heart.
HMM..those sound awfully familiar. I know, I can't do my own diagnosis, but it puts my mind at ease just a bit to have something to go on instead of "boom, you suddenly have heart disease out of no where!" The good thing.. there aren't a lot of lifestyle changes they suggest that I don't already do. I would love to increase exercise, but until I actually have regular care for my COPD that's not as much of a possibility. When walking to the bathroom makes you short of breath and you count your good days by not needing a neb treatment after doing so, additional exercise doesn't really seem like a good plan. I already eat as good a diet as I can afford, and I don't eat a lot of sweets or junk, or red meat and they don't have dietary changes other than 'lose weight' and decrease salt (I use very little salt) up there anyway. I'm not at a point where I can lose weight without increasing exercise. I do what I can on my good days.
Now back to the numbers. Before November Medicaid's outlay for me so far this year was $6682.43.
We can add in at least another $2142 for November, plus prescriptions.... twice for ER prescriptions and all my regular ones. Will I need to go back into the ER when this steroid boost dosage is done (which will be in the first week of December)? I don't know. I can't see the future. It's a possibility I will be back in next month, but I won't add it in yet. Right now however we're sitting at $8824 paid out to Hospitals for emergent care and one admission. Three of those emergency room visits were directly correlated to not having ongoing COPD treatment and lack of prescriptions needed to manage my condition. All of that was due to lack of medicaid.
The prescriptions that I'm on right now, when I can keep up with them both financially and prescription access cost $68.82/month or $825.84/year. The health clinic here sucks. I've been trying to get a follow up appointment to the Nov. 11th visit since Nov 12. I've called these people 5-6 times a day every day, and left messages each time because I couldn't get a human. They've never called me back. This clinic is 3 miles from the house, and I'm not sure what their hours are. And we have no car, so that is going to mean that next week one of the kids is pushing me 3 miles in the wheel chair (each way) to this clinic on the off chance they will be open to try and get an appointment and find out what paperwork I need to bring with me to qualify for a low co-pay and how much that co-pay is so we can scrape it together. (probably $20 plus whatever lab fee there is, at least that's what the one in Orlando was charging me). If I could have gotten an appointment this month, it would have been covered by medicaid. That's not an option at this point. I can't go out of the house for a few days because the temp has dropped again and the new meds haven't had a time to kick in. If I try to do it today it will mean I end up back in the hospital. And I'm not going to risk them being closed or closing early on Friday with the holiday tomorrow.
The point to all this is this: If Florida expanded medicaid I would be covered on January 1. They are not. and I make under 100% of poverty level. I don't qualify for a subsidy at all because I make too little. It doesn't help that how healthcare.gov considers medicaid eligibility and how the state does are two entirely different systems. Healthcare.gov counts me and anyone I claim on my income tax return. That's me and both my kids because I was the one working, so I was the head of household. My other half and I aren't married, which is good, because his SS payments put him at 101% of poverty level and HE is going to have insurance in January for very low cost.
The state figures out medicaid based on household income. That's me, my other half, and Caedy's income. The kids qualify, the adults do not. I qualify for medically need and so does my other half because of medical conditions. Caedy has insurance through work through January, and then on the exchange after because her work (McDonalds corporation, corporate owned store NOT a franchise) is dropping it. If the state used the same qualification system as the federal government, I would qualify for medicaid, because the only income I have right now is my child support (I'm still waiting to hear back on my SSDI app, and may end up getting a lawyer for that). But of course I'm screwed.
This policy makes NO fiscal sense for Florida. It is very apparent, that even if I am diagnosed on my other conditions and new meds are added it will still cost the state much less than $8824/year for my health care on average. AND if they'd kept me on medicaid, my COPD wouldn't be getting worse (I had been stable for 2 years), at least not this fast. I probably wouldn't have an enlarged heart. I would be diagnosed with the seizure condition (which would probably actually help my SSDI claim thus giving us more money to spend on monthly needs and increase the sales tax the state collects). I would probably still end up in the ER from time to time, but not as frequently (definitely not twice in one month). Probably the admit I would have ended up in but the other three would have been much less likely to have happened as three of those were almost solely due to lack of my maintenance prednisone because I couldn't get into the clinic and get a new prescription. And if I had medicaid I not only would be on those meds but two other maintenance meds that kept me VERY stable, and down to 2 ER trips a year with no admits the last year I was on them.
If this law had been passed 20 years go, I probably would be working, and with a degree in Occupational Therapy, I'd be working in a very well paid field, helping people, and contributing a LOT more than I am now to society in general and the economy specifically. I had plans for my life, and I worked hard to be able to carry them out before my lungs crashed at age 40.
I could have easily had another 20 years to work before COPD developed had I been able to manage my asthma better and prevent pneumonia more often, despite the contributing genetic and environmental factors. I would have been able to move to a drier climate for one, when it was advised that I do so to prevent further deterioration of my lungs. But it's really hard to move to the other side of the country when you live at 75% of poverty level, especially when all your relatives are here. I know, wasn't a chance of that happening, and nothing that can be done to fix the past 20 years. But we can fix this for our kids. We can prevent this from happening to someone else in their 20's with asthma.
This is what denying medicaid expansion means in real lives and real money. Just in ONE case I know, but there are more of us out there. Many more. I probably won't ever be able to work again, because of the COPD and other issues. My life span will be shortened because of this. It may be shortened even faster now that it's affecting my heart. Especially if I can't find out why and get on meds to prevent it from being damaged further. The one good thing I had was my heart. I didn't have to worry about that so long as I kept on my aspirin regimen and didn't mess around getting to the hospital if I suspected a pulmonary embolism (often caused by excessive coughing). Now I have to hope that I live to see medicaid expansion passed in Florida so I can get to the bottom of this and get it treated as it needs to be. I'm sure the stress and worry isn't going to help with that.
Thank you for listening my friends. And to those in Florida, this is yet another reason we really need to get out there and DO something. I am very limited in how much I can do, but many of you are not. Go! Sign up more people, work to get the local representatives changed, and by god, get Rick Scott out of office. Even if you have to put Charlie Crist in! I know a lot of you don't really like him, but he's already said he will work to fix this. And this alone would go a LONG way to repairing Florida.
Sat Dec 14, 2013 at 7:34 AM PT: I have been able to get a hold of the local health clinic finally. I had to go up there to do so, but I have an appointment January 2nd. I believe I have enough Prednisone to last me that long, and enough nebs. If not It will be another ER visit because there is NO CHANCE of an earlier appointment.
I found out why I haven't been able to get a hold of them by phone. They are so overwhelmed with people without health insurance that they aren't returning phone calls from new patients. They're only returning phone calls from existing patients. If you're a new patient you have to go in to make an appointment in person. Of course, they don't tell you this anywhere, so if you don't figure it out, or you can't just show up, you're out of luck. It takes me about an hour to get there, with someone pushing the wheelchair for me. But maybe having an appointment in January will mean no more two ER visits in a month. I can hope.