July Update

Holding Out For Hopkins

I spent the month of July on the phone to sum it up. Trying to figure out any which way to solve the insurance debacle and trying to contact Hopkins to arrange admission and find out if there was any option for financial assistance.  

I applied for an extension on my Mom's health insurance plan (which I aged out of on June 30th) back in the Spring. At first I was denied, we appealed and I was denied again. Even though I was determined to have a medical disability, they determined I was not handicapped and that's the only reason they would allow an extension of coverage.

The admissions coordinator at Hopkins informed me that there is NO way to get medical assistance if you are an out of state resident. Medical assistance was only available to in-state residents. I started seeking any other options as to how I could out of state health insurance coverage.

To sum up the roller coaster of up's and down's here is a quick recap: 

At my appointment on June 24th at John Hopkins (after 6 months of waiting), the team of doctors I met with told me that not having insurance wouldn't prevent me from getting the treatment I need, it would just mean admitting me in a round-a-bout way through the ER to get into their inpatient program. They instructed me to contact the admission's coordinator to arrange admission in this way. Sounded promising.... 

Upon calling the admission coordinator the next day, and learning she was out of the office for a week! I was up against a deadline of trying to figure out if I needed to cancel the Horizon insurance so it wouldn't prevent me from being able to get admitted through the ER in another state as a self-pay. Being persistent I kept calling other people at Hopkins. I finally got through to someone on June 29th and found out there was a 3-4 week wait list to get into the program. So keeping the insurance for a month didn't seem to be detrimental. Felt like a bit of the weight lifted from my shoulders...but there was still a lot to work out. 

First week of July I finally spoke to the admission's coordinator who informed me that the only way to be admitted as a self-pay patient with no insurance was to pay the full amount up front which would be over $40,000. I asked about financial assistance and was told it is only available to Maryland residents, not out of state residents. Even being admitted through the ER as a self-pay, I would have to have the payment to get into the program. Now Hopkins was out of the question....

I realized I needed out-of-state insurance in order to get into this program. I took the admission's coordinator word over what the doctor's said at my appointment because she is the who deals with the insurance, not the doctors. The doctors treat patients, not spend their day setting up insurance coverage. I called the doctor's admin assistant and explained there was NO WAY for me to have $40k up front and this was not what we were told by the doctors at my appointment. Now, I was told that it isn't an all or nothing up front. If I don't have the $40k (which, um who would....and IF I did I wouldn't be without insurance!!!) I would need to work with admission's coordinator to negotiate what I could pay up front and then arrange a payment plan. Seemed a little more promising than $40k up front...

In the meantime, while I left more countless messages trying to reach the admission's coordinator, I looked into paying for an individual health insurance plan that had out of state coverage, and wanted to slam my head into the wall a few times. It felt like this was going to kill me before I could get there to get the treatment I needed! After countless hours, I found out individual insurance plans with out of state benefits pretty much don't exist. Individual health insurance plans cover basic basic coverage in the state you live in (with huge deductibles that cover nothing until you hit the deductible!) In the course of researching individual health plans looking for out of state coverage I came across a NJ law for Dependent Under 31 coverage. You are able to extend coverage through a parent's health insurance if they meet certain requirements. It seemed like I met all of these...Things started looking up this seemed like a good option.

A few days later after, can you guess...more phone calls and headaches, we found out my Mom's employer is self-insured excluding us from the Dependent Under 31 law. Not so promising....

I found out I was eligible for Cobra. I wasn't aware that a dependent could get Cobra, I knew my Mom could get Cobra because she was the employee. It was outrageous! But I realized this was the best option because it would give me the out-of-state coverage I needed to get admitted into the program -- without trying to go in as a self-pay and have to worry about getting admitted through the ER and hoping I didn't get sent home to Jersey! 

I sent in the application and payment for Cobra mid-July and it took 7-10 business days to process blah blah. Hopkins couldn't verify the insurance coverage until it was in effect -- even though it was the exact same coverage I had before. I pulled up an outline of my plan and spouted off what my coverage was and how much of my deductible was met and they still needed to hear it from the insurance not from me. (sigh)

Cobra finally went into effect the first week of August. So now all that was left was the Hopkins admission's coordinator had to verify the insurance, and have it reviewed by the admin staff and approved. Then, once a spot opened up I would be admitted. I was getting closer.... Now can you see why I said it felt like a rollercoaster?? 

Hopkins

After 6 months of waiting I finally had my appointment at John Hopkins on June 24th. Overall my appointment with Hopkins went well, I saw a team of doctors in their clinic not just one gastro doctor. They thankfully DID NOT want to just repeat every test I've had and they DID NOT just jump to saying I need surgery to remove my entire colon!

The team approach was much different from any other appointment I've had with the parade of doctors I had already seen. They explained my body is in an extreme state and they developed a course of action to start to rehabilitate it. It will not be easy or a quick fix but it is what my body needs. They want to admit me to their in-patient program which means I will stay there. There is no exact time frame of how long I will be there. It is a case by case basis. They said typically at least a few weeks but it can be several months. Dismotility, aka lack of motility through my GI system, is the core problem contributing to all that is not functioning with my body. I'm stuck in a vicious cycle of my body not getting the nutrition it needs, being so underweight, my GI system not functioning, experiencing chronic pain, the pain interfering with nervous system function, causing other system of the body does not function right aka not sleeping. Their plan is to repair and rehabilitate my GI function NOT remove my intestines.

When I explained my insurance situation, that I would lose health insurance as of next week, they did not hesitate, they said we will figure out a way around it. It may mean admitting me a round-about way through the ER instead of how they typically admit people but they aren't letting the insurance stop my need for care. It was a lot to take in and Its not easy, I'm definitely worried. It took a long time for my body to wind up in the condition it is in, so I know it will take a long time to repair it.

Their confidence in being able to treat and restore my body gives me hope. They said my condition is not something common, but they have seen similar cases of Functional Gastrointestinal Disorder before and they have rehabilitated them. They were honest and straight forward and said they wouldn't tell me that they could help me if they really didn't think this was something I could recover from. 

I have accepted that I cannot continue to live in the condition I am in. I weigh less than a 10 year old child and I've been this at this weight for a year now. All of the work I'm doing for my body preparing and cooking all my own food, blending and pureeing all foods, and all the supplements I'm taking to replace what I'm deficient in is not making a difference. It is past the point of my control and I know my body needs more than I can give it. It's not easy, but I recognize that this is what I need to do for myself. It is worth dropping my life and getting the treatment I need if it will save my life.

June Update

June consisted of IV therapies weekly and working as many days as I could bear before the end of the school year as I approached the long anticipated appointment at John Hopkins.

I continued IV therapies up until June 30th the last day I had my health insurance. They were leaving me feel weary and fatigued but not as extreme as the first few. I felt beyond fatigued from a combination of the IV therapies, working as many days as I could and the constant pain.

 



And this was the aftermath...when you're vein rejects the needle. Thankfully this was as it was coming out and not going in! I was pretty sure I lost a layer of skin each time I did an IV infusion from the adhesive from all the tape! But on the upside, I wouldn't have any arm left =) People pay lots of money for waxing...who needs that when you're hooked up to an IV for 4 hours =p

The end of June was a whirlwind - over the course of 4 days (post Hopkins appointment) I found out I was denied Medicaid because -- ready for this? -- I make too much money from receiving disability. They determined to be medically disabled then denied me health coverage under Medicaid because I "make too much" since they consider Social Security Disability to be income. I could go on a tangent forever about this...but instead it seemed like it might work out better because Medicaid wasn't good coverage. Only my allergist took it and my medications weren't covered. So it would've meant starting all over with new doctors, including a PCP which, when I'm in the condition I'm in, is going to be more of a headache than a benefit!

I had lined up an individual insurance plan with Horizon to go into effect July 1st, since I got no response from Medicaid (after I applied 3 months prior!). But during my appointment at Hopkins they told us having an individual insurance plan that didn't cover out of state may cause a problem trying to get admitted as a self-pay. To get into the program as a self-pay, I would have to be admitted through the ER and they would see that I have insurance in Jersey and say, "there's no need to go to Maryland when you can go to an ER in New Jersey." This sounded really precarious to me. I feared getting there and getting sent home instead of getting admitted.  

I real quick had to figure out if I needed to cancel the Horizon plan before it went into effect so I had no insurance if that was what I needed to do to get into Hopkins. Unfortunately, the person at Hopkins I needed to talk to about this was out of the office all week! I spent 3 out of those 4 days on the phone, leaving countless messages, emailing, and trying to get an answer. This was only the beginning of the rollercoaster ride I went on...

I turned 26 on June 28th, a few days after my Hopkins appointment. I got to go out to dinner with my friends the night before, and on my actual birthday went to a comedy show. It was nice, but I really felt like I was holding my breath and carrying a 50 lb weight on my shoulder with all of this hanging over my head. On June 29th I finally spoke to someone at Hopkins and found out that there is 3-4 wait list. So keeping the Horizon insurance for a month shouldn't hurt. It felt like some of the weight was lifted, but I was still waiting to find out if/how this would work admitting me as a self pay.