THE POSSIBLY CONTROVERSIAL POST

 

When something bad happens, it is human nature to look for the reason why and yes, even look for something or someone to blame.  We like to think that life is fair. Which is SO not the case. Non-smokers get lung cancer. Four-year-olds develop brain tumors.  Physically healthy people slide into dementia. It’s a hard life lesson that gets us all. Bad things CAN happen to good people. 

I am not claiming to be a saint. But when I was diagnosed with CIDP, I looked at my health so far in my 50+ years, and found it pretty darn good. My only stay in a hospital up until that point had been when I gave birth to our daughter. I was rarely sick. My only doctoring was with chiropractors.  There wasn’t much ever wrong with me that Tylenol or sinus medicine couldn’t fix.  

So, when CIDP entered my life, I was blind-sided.  It was not something I caught from someone, it had no clear causes, it just suddenly became activated. Like a gene flipped on that had been hiding all along.

 

Strangely, I can not identify the exact moment that I suspected I DID have something to blame.  I think it was before I went to Rush, but I don’t know how much earlier than that. I do know that we connected the dots when we first heard about GBS and that CIDP was the chronic version of that.  I have mentioned Guillain-Barrre Syndrome before.  If you Google it, it states that it could be brought on after an illness, such as influenza or the stomach flu.  These illnesses end up altering nerve cells, so your body sees them as a threat and starts to attack them.  In rare cases, surgery or vaccinations can trigger it. 

It was that last one that caught my attention.  It is widely known, even included in commercials now, that some vaccines have an increased risk of causing GBS. The commercial for the shingles vaccine states it. The yearly flu shot is another one. So the fact I received the Covid-19 vaccine mere days before my finger numbness started,  raised a few flags.  I got the first round of the Moderna vaccine on March 2, 2021.  It was a Tuesday. That weekend was when I first noticed the numbness.  Since we were clueless as to what was happening, I got the 2^nd shot exactly 4 weeks later. We were only doing what was recommended by the WHO.  By then, I had visited my chiropractor looking for answers, like maybe a pinched nerve, or whatever else might cause finger numbness.  He has been slightly perplexed because it occurred in both hands, not just one. SO, no, not a pinched nerve issue. 

After my trip to Rush and acquaintances learned of what I was dealing with, someone sent a text to my husband. It included a link to a government website created by the US Department of Health and Human Services.  It was called CICP. Countermeasures Injury Compensation Program.  Once you clicked on it and navigated around, it listed the Covid-19 vaccine as a valid reason to fill out a claim form.  Which I did.  My doctor at Rush, after learning of the timing of the vaccine and my onset of symptoms, did not seem surprised in the least.  No one in the medical profession, that I have found, would put their hand to the fire and say my CIDP was definitively brought on by the vaccine, but no one ever pooh-poohed the idea either. 

I want to state right now that I believe in vaccines. That in itself has become a controversial, sometimes political statement, in our society.  Everyone is entitled to their opinion, and that is mine.  We had to think long and hard and ask a lot of questions before we decided to have our daughter get the Covid-19 vaccine.  She did just fine with it. As did my husband. What happened to me, if the Moderna vaccine was the culprit, is extremely rare.  

The reasons I decided to pursue the CICP claim are varied. I wasn’t looking to “sue” them for a bunch of money, I was still able to be employed and live a fairly normal life. But if you remember my last post, we owed a crap ton of money in hospital bills. I lost income for all the time I was off. I was losing income currently for my two days of infusions I had to take off work for.  I wanted it more widely known that the vaccine COULD cause CIDP. It is a wicked double-edged sword. The vaccine protects some high-risk people from getting dangerously ill and being hospitalized, and the vaccine also creates high-risk people who have to worry about their immune systems now. Part of the reason we decided to vaccinate our daughter was that school is a germ factory and if she happened to catch Covid she might be okay, but giving it to me was now not an option, as I couldn’t really fight it. 

Anything concerning the government is frustrating.  I initially submitted a claim and requested records from the three medical facilities they required, back in November of 2021.  I won’t bore you with the timelines and tedious conversations with records departments, but it was not until December of 2022 that the CICP acknowledged they now had all my records required for them to process my claim. It was an uphill battle.  And even the email letting me know we were finally all good stated that they cannot estimate the time it will take to review my file and decide if I have a valid case. Don’t even bother calling to ask. I am basically at their mercy. 

So, I continue to try to pay my bills. I have a new job now with actual sick days that I can be paid for and an employer that understands and is interested in my story.  I sometimes wonder how my life would look if our family had decided not to get vaccinated. I actually did get Covid in July of 2022. But this post is already entirely too long so I will save that for another day. 

 

I OWE HOW MUCH??

As much as dealing with insurance raises my blood pressure, the prices set by pharmaceutical companies makes my blood boil.

Let’s take a look at what I receive in my infusions. The med is called GammaGard and it is an immunoglobulin. What is that exactly? It is antibodies, collected from the plasma of healthy people. There are always rumors on the CIDP Facebook page that there is a shortage or will be a shortage. So far, I have not experienced this. It makes me very nervous to think that suddenly it might not be available. The plan was always that my IVig infusions were a gateway to an oral medicine, so getting me to that point is what we are trying to do. More on that in a bit.

Because Gammagard is an immunoglobulin and CIPD is a rare disease, I have a feeling big pharm puts a high price on it just because they can. Not including my 4 day loading dose when I was diagnosed at Rush, I have been receiving infusions every 3 weeks for 20 months. According to my statements from the local hospital, my 2 day visit is roughly billed out at $35,000 each time. I have racked up $945,000 to date. This is where the love part of love/ hate with insurance comes in. Each time I come in and the insurance is billed $35,000 my copay is $110. Which still adds up to quite a bit of money over time but seems do-able compared to full price. So, the stories I see of people’s insurance companies suddenly not covering their IVig completely freak me out. And furthermore, $35,000 seems like a crazy amount.

My dad had IPF, which required a stupid expensive pill that he never could have afforded if not for a foundation we applied to that covers meds like that for people who can’t afford it. He was a retired farmer who lived simply. But why is the pill so expensive to begin with? A 60-day supply runs almost $13,000. Who comes up with these prices?

I started on Azathioprine back in the spring of 2022. It is an immunosuppressant. People who have had an organ transplant take it. It keeps your body from attacking the organ, or in my case, attacking itself. I needed to have bloodwork done every two weeks to monitor my liver enzymes, as this drug can elevate them. We slowly increased my dosage, working towards a goal that would allow me to slowly be weaned off the infusions. As we upped the dosage, I started to have side effects. My enzymes were becoming elevated, and I was nauseous a good part of the day. Lost some weight over that one. It was decided to switch me to another one. There are only about 3 or 4 to chose from so I was hoping this 2^nd one would work. It is called Cellcept and I have been on it about 6 months now, at the optimal dosage. My bloodwork is all coming back fine so I think we have a winner. I am taking 2000mg of it a day and a 3-month supply costs me $60. If I look at the receipt and see what it really costs as opposed to my copay, it is around $2600. Again, why so expensive?

We haven’t discussed my Rush bill yet. That didn’t arrive until several months after my admittance there. I was not looking forward to it. The day it appeared as a notification in MyChart was not a good day. My total bill for my 4 days stay there came to $74,263. My portion was slightly under $15,000. My heart sank when I saw that. How were we going to pay that? My husband has a good job, but I was just part-time at barely over minimum wage. We did not have a ton of money left over at the end of the month.  We basically just sat and stewed over this new predicament. Miraculously, about a month or so later, the bill was adjusted and cut in half, being absorbed by the insurance company. I have no idea why and I was not going to question it.  It is a sad day though when you are happy to have a $7,400 bill instead of twice that.

I will see my neurologist in March, and we will talk about spacing out my infusions to every 4 weeks and see how that goes. I am not sure if it then will go to 5 or at what point I can stop them totally because the Cellcept will keep me on an even keel. Remission is also not unheard of with this disease. That would be nice.

Regardless, the day I can stop spending my days in the infusion center is one I look forward to.  

WHY DID I WAIT SO LONG TO DO THIS???

 

WHY DID I WAIT SO LONG??

I think I mentioned before I am not such a good patient when it comes to starting an IV. I can’t watch for sure. If they have to poke more then twice or “dig around” to get flow, I tend to get lightheaded and have to lie down.  I was poked many, many, many, many, times when we went through fertility treatments to have our daughter. I learned these things about myself. So, sitting for hours with an IV in my arm was less than pleasant.

I learned through the FB group, that some members had opted to have ports installed. I was intrigued but a little leery. I have had things leave my body before, like my wisdom teeth and giving birth, but the idea of implanting something IN my body frankly freaked me out. I did go so far as to meet with a surgeon about what exactly it entailed. The length of the tubing was frightening. The surgeon was a bit of a comedian. In listing the possible complications, he told me nicking my lung was a small possibility, but he rarely had that personally happen and it was mostly skinny women who smoked. I was neither of those but I still was apprehensive. I decided to just put that on the back burner.

Until the infusion I went in for that took seven tries to get a good line. It was horrible. They had three different people come in to try. I was near tears. It started to really make sense why the pharmacy waits until an IV is good before they mix the meds. I was wondering if I was actually going to get my infusion that day. Getting a port started to sound like a really good idea.

So, I did. I have had it now for a year and I love it. The procedure was short and had no complications. I was sore there for a few days, and it was definitely strange to see this bump under my skin. I was scared to touch it. I was scared to bump it. The surgeon had to guesstimate where my bra strap would lay and he was close but not perfect. But it didn’t really matter. Nothing bothers it. Over time I feel it has got a little more prominent and you can see the three little bumps they triangulate between to find where to insert the needle. There has never been an issue getting blood return and be good to go.

I was lucky, there are horror stories about port issues. Infections are a big thing. Sometimes it works for awhile and then problems start. I still am glad I did it. It makes my infusions smoother and even shorter. The pharmacy is willing to start the mixing procedure when I arrive since accessing the port literally takes two minutes and is never an issue.

It is one of the best decisions I have ever made.