Red_Tape1This will be a short rage against the machine and then an update.

I really hate my insurance company! I was not given a choice of insurance companies when I signed up. I got what the University of Missouri decided it was going to contract with. Some of you may recall back to 2008 when they refused to pay for their part when I was first scheduled to have this bone marrow transplant. They were the secondary insurance company at the time, because I had student insurance, and Terri worked full-time and had them.

Anyway… now, in their pocket friendly wisdom they decided to deny a treatment I NEED, Yes, it is expensive, but it would solve the problem. Instead, I get the alternative treatment with longterm and harmful side effects.

Ben Franklin, who I do admire, said “a penny saved is a penny earned.” This is just not true. Instead of paying for an expensive treatment now, I am far more likely to have health issues longer which the insurance company (and ultimately all of us) will have to pay for. AND if the alternative treatment does not work I have to go back into the hospital! And we know how much that costs per day. I’ve always believed in preventative care, because you end up with healthier people and who don’t need to visit the doctor as much (or have a better education, etc.). And that saves money for everybody. Our society has not fully accepted the reasoning behind this concept. We still think as Ben does… “a penny in my pocket is mine, even if it costs me a dollar later.” Investing now saves money longterm.

So YES… I hate insurance companies with their short sided, profit only motive mentality.

Now the Update: So yesterday was a tad disappointing. We set up for Mike (Giblin) to take care of the kids, so they would not have to spend 12 hours going out to St. Louis. Thank you Mike!

When we got to St. Louis we did not see my Doc, instead we saw a doctor who is part of my medical team and NP Stephanie came in a bit later too.

Bumping up the Prednizone to 30mg worked for only a week. My platelet count dropped again and is now at 32,000; when it drops between 20 – 25,000 I start getting transfusions. The other blood types are rock solid and that is important. WBC was 6.1, and RBC was 3.5. All stable and the white cells (my neutrophils are in the normal range; whereas the red cells are just below the low of the normal range. That is really great and just where we want (or expected) them to be.

Now we have more evidence, all the lab tests have come back negative. There is only one solution left. The GVHD which is affecting my gut and liver is also killing off my platelets. Not good.

There is a solution, hence the rage opening this post. I get the IVIG treatment. What IVIG does is that it coats (or binds with) the receptors on the outside of the cell, so that my donor immune system does not attack it. It does this to the platelets and other receptor cells throughout my body, which are my cells. It is an immunosuppressant that targets the cells and does it very well with minimal side effects. What I don’t understand is why the donor T – cells are killing off their own platelets; they are after all part of the donor’s immune system. But that is what the med team has concluded. They have seen this before and know how to treat it. Like we always said they would be playing with my meds for up to a year (or longer). We really hoped for the best case scenario and I would be off the meds and living a normal life, whatever that is.

So while we were talking to the doctor NP Stephanie comes in and tells us the insurance company denied my treatment, but that they were appealing it and would know in a few days. IVIG is expensive, but it works and with few side effects. AND it lasts up to 3 months. So the only alternative is to up my Prednizone. Now I am up to 60mg per day. Prednizone has some serious side effects that are longterm and harmful to my body. They always try to give you low doses of it, because of this. It acts as an immunosuppressant and is part of normal treatment following a stem cell transplant. But it is the level of the drug and duration that causes the longterm and harmful side effects. But I have to have it. They have to get the GVHD under control. GVHD kills cells. Not to be dramatic, but GVHD can kill me. There are no other options. The donor immune system is waging war on my body. I feel like crap, and it is rather uncomfortable. No-one said this was going to be easy. But my insurance company is making it a hell of a lot harder. I NEED the IVIG treatment. If the Prednizone does not work in the next two weeks or I don’t get the IVIG treatment, I will be back in the hospital in two weeks. Bottom line. We are praying that something positive happens in the next two weeks.

i know this all sounds like a downer… it just is. Intellectually, I know this is just a large hole in the road to navigate around and is only temporary. Physically and emotionally, right now I can no longer see the forest. But I have Caitie and Kai with me everyday, Terri, and all of you. And that is very comforting. So thank you once again, love you all!

~ Mark

P.S. Hi. This is where I am supposed to come in and lighten things up a little and insert a funny. But, I am sorry, I got nothing. I just want to hear the doctors say, “Okay, this is what is wrong. And this is what we need to do about it.” And then the insurance company says, “Yup, those doctors know what they are talking about, let’s go for it.” Check and check. But that’s not very funny is it.

On the upside, baring any unforseen circumstances, we do not have to go to St. Louis next week. They are going to do the weekly blood tests locally, and send the results to St. Louis. And today is Day 90. So, Yay!! Can you believe Day 100 is just around the corner? Even when time is crawling, time flies.

Good days and bad days. Bumps in the road. Sometimes a detour. I try to remind myself and everyone, that even though Every day may not be good, there is something good in every day. But with all of you behind us, we are just going to have to push through. Pardon me now while I go kiss my husband and hug my children.

~terri

Head-Scratcher1

3 Comments

  1. I wish I was eloquent and good say something that would make this all feel better. Gosh, darn it, I can’t and I can only say I’m so sorry. But you have to keep fighting and think positive and confident that it will all be ok. This is part of the uphill climb. You will get the top and the silver lining will be a beautiful sight. The best part is the Terri, Caitie and Kai will be right there with you and all you family and friends will be cheering you on.
    Hang in there and don’t let the darkness overcome you, there are stars in the darkness and they are beautiful.

  2. Linda Senenfelder

    Our thoughts and prayers go out to you that things will work out and you will get your treatment.

  3. Sunbeam Magic

    That’s exactly what I was thinking “10 days to go” to reach your goal of 100 days …. woot hoo! I’m proud of you both! and the kids too! and although the subject matter is not as sweet as say 100 days of water sports… it has been so informative, plus heart wrenching, heart warming and heart full! You are so brave to share the ups and downs with the likes of us he he. I’ve lost two family members to cancer and do believe education and blogs like yours will help the R&D and perhaps one a cure for all mankind. You are my heros! We are Getting together a Partay Barrell of pixie dusts, butterflies, daffodils & dandilions, plus some yummy sweet treats (made in my pixie oven) for your 100 day Celebration! ♥