For Shame Dear Readers, For Shame
I like how all of you just let it slip by. Didn’t even bring it up to the kid who is battling cancer. Lest you think my chemo brain would get the best of me, something occurred to me today. One day last week I posted twice to Caringbridge. Yes Ladies and Gents, that means you had a bonus issue of Rob for a bit and the other night when I missed a post didn’t mean I was behind. It actually means I’m right on track. And here you all let me think I owed you one.
Of Red Alerts and Lockdowns
I’ve been roaming the house somewhat freely. As previously mentioned I take some caution around the kids, but overall I’ve wandered the house when I’ve had some energy and have even taken a few steps outside. Today that all ended. Tucker has a fever. Now kids get fevers all the time, but any fever for me is a one way trip back to the hospital. They don’t even tell you to wait it out a bit to see if your temp goes back down. It’s simply a call to the Hematology office, you say “fever”, and they reply “we’ll have a bed ready for you.” Actually, I wouldn’t be surprised if I could just tweet “Fever @IUHhematology” and show up 30 minutes later to a team of nurses and syringes filled with antibiotics. So with Tucker having a fever, I’m now on lockdown. OCD Lindsey of course came into our room to wipe down germ prone surfaces. Hypochondriac Rob is currently typing this with a surgical mask over his face and an air purifier not but 2 feet away. I’ve also been rubbing myself with copious amounts of hand sanitizer (only in appropriate placed of course). And I expect this will be the way it is for the next day or two because the only F word I’m more afraid to utter than flutter is Fever.
Uncle Jim Gotsta New Liver
If you thought I was the only one in my family getting a transplant this summer, you’d be wrong (unfortunately if you thought I was the only one in my family battling cancer, you’d be wrong on that account too). My Uncle Jim had a heart surgery in 1973, well before many safety measure were put in place for the blood supply. Through a transfusion he was infected with Hepatitis C. The good news is that Uncle Jimmy got his new liver last night. He’s resting at an IU Health hospital and is doing well. Please join me in praying for my uncle, his recovery, and a continued vigor for life. It would just kill him if a prolonged hospitalization caused him to miss Hillary Clinton’s visit to Indy later this month.
I will also mention that my Aunt Liz is finishing up a year of chemo to fight breast cancer and is in remission. My uncle Claude is battling a rare form of lymphoma and is making great progress. As one person said, us Culrosses are a stubborn bunch and won’t let a little sickness get in the way of living our lives and praising our God. Expect to see the 4 of us at Labor Day family reunions for years to come.
IU Health, I’m (almost) Breaking Up with You
This is a preface to the next section below. I wrote that section 5 hours ago when it was fresh in my mind. I’ve left it the way I wrote it originally. Two things still bother me about my interaction today. The first is how the organization I am counting on to save my life could still be so inept in certain places. I worked at IU Health from 2003-2014 and saw many improvements along the way. Unfortunately there are still some basic improvements to be made. The 2nd thing that bothers me is that today I didn’t hear “I’m Sorry” or “thank you for suggesting that”. All I heard was basically “That’s the way it is and we’re still looking into it”. I hate to spoil the surprise, but the “it” they are still looking into is the charge for a visit in March of 2014. I’m quickly running out of fingers and toes to count how many months this is taking to resolve…
Oh, IU Health Patient Financial Services, We Really Need to Work This Out
It’s no secret I’ve had my difficulties with IU Health Patient Financial Services (PFS). Through many years of being an IUH Patient, I’ve seen successes at PFS and failures. The fact of the matter is, I just don’t have time for the failures anymore. Receiving bills months after the fact and incorrect bills at that is just not acceptable in this day and age. I buy a drink at Starbucks and my phone pops up my new balance a few seconds later. I spent time on the phone with PFS in May to resolve an issue and today I received the exact same bill with the exact same issue that was supposed to be corrected. The response from PFS…”We are still investigating it”. Now, I mean this when I say it…it is perfectly fine with me that the bill is still being investigated. But why in this day and age if my charge is under investigation do I receive the same bill again with the minimum payment now doubled because I didn’t pay last time (per instructions). This is not customer service PFS. This is not something that helps you save $1,000,000,000 as Dan Evans wants. This is basic accounting. If you are investigating the claim, put the amount on hold while you investigate. I might also add that it isn’t a good practice from a cash flow perspective to take so long to investigate a claim. My friends, this charge is from a procedure in March of 2014. MARCH OF 2014! When I stated that I’ve called in before and I wish they could put something on the statement so I wouldn’t have to call in again, I was simply told that “sometimes we have to call in to get things straightened out.” IU Health, this is not premenience. This is not being 2nd to none. This is not the strength it takes. This is basically the sh!t it takes and you’re sh!tting on your patients.
Now, I was as polite on the phone as I could be and didn’t even mention the fact that I was just re-diagnosed with Cancer and will be facing more issues with bills. I thanked the rep for doing her job and said this was a systematic problem and not a problem she could solve. However, the kicker for me was when she asked if I wanted to go ahead and take care of the $14 balance I had on my account from a May 8th visit. So yes IUH, let me rush to pay that $14 from a little over a month ago (which by the way doesn’t even show up on the bill I received today) while you drag your feet on the $1,800 charge from March of 2014. I’ve known and still know today a lot of great people that work in Rev Cycle, but guys you have to have to have to get this fixed. I’m just one patient out of many that are impacted and really it shouldn’t take this long to figure out.
The (almost) Straw That Broke the Camel’s Back
I keep using “almost” because the reality is I am literally fighting for my life here and now is not the time to change doctors or medical institutions. The sad truth though is had it not been for my relapse, I am certain that today would have been the day I stepped away from IU Health as my primary source of medical care. I am a very dedicated person. I have passion for the things that IU Health does, but there comes a time when enough is enough and I (almost) reached that today. I hope PFS gets things turned around as the healthcare landscape in Indy is already competitive and will just become more so.
I love my sister. It’s true I stuck her hand on a cactus once. It’s true she wouldn’t play games with me more than once. But the fact remains that we love each other and would do anything for the other. My sister is the quickest and best way to an SCT. As mentioned, there is a 25% chance we will match for an SCT. Earlier this week she received a test kit in the mail, which for lack of a better explanation, contained 2 q-tips. She swabbed the inside of one cheek with one and the inside of the other cheek with the other. She then packaged them up and prayed over the envelope before mailing them in. Assuming the HLA lab received the samples today, I could know by this time next week whether we are a match or not. If we are, then SCT becomes a lot closer. If we are not, then I still put faith in God that I will have a match somewhere out there and perhaps Michelle can help save a different Rob.
Just a quick reminder that if you are between the age of 18-44, you can register for free at bethematch.org. You must be willing to be a donor to anyone and there is only a 1 in 540 chance that you will ever donate, but it’s a really simple way to save a life. Hopefully you agree with me that any life is worth saving, so please consider registering. I would if I could.
A Duck Dynasty Prayer
I’m mad and I’m frustrated. Both are ok, but neither are the feelings I want to hold onto tonight. Help me to let go. Help me to forgive. Help me to fight for what is right, but to do so in a way that will bring change. Help me to be a voice to those who have no voices. Help me to navigate this class 5 rapid known as healthcare. Father God, it ain’t easy, but then again you never promised it would be. You did promise me one thing though and I hold tight to that. I hold tight to you. I will drink the living water and I will not live in a house that is built upon the sand. You are my rock Lord God. To you I call out. To you I give thanks. To you I will l listen. Please guide my voice and guide my hands. Let me walk humbly in your path. Thank you for another day.