I have spent at least an hour on the phone every day this week, talking to insurance companies, KCI (manufacturer of Edgar), wound care nurse billing people, wound care DOCTOR billing people (yup, they are completely separate... THAT makes sense - NOT!), and some others that I've forgotten.
I think I forgot to mention in my last post that I saw the rheumatologist last week. It was a quick visit - sorta "yeah, you're flaring, sorry, we can't do anything about it until your wound heals." The two treatment options I have would both suppress my immune system and slow down my healing - exactly what I don't need right now! I had been needing to ice my knees every night - they would turn bright red and I could feel the heat radiating off them from all the inflammation. My fingers and wrists were very stiff, too. Thankfully, I think that the swelling and redness and stiffness has been better for the past couple days.
Rheumy ordered labs. Dr. Saturday wanted to run labs, but I had just had them done with Rheumy, so it would be simple to just send them over to him. So I thought. ;). Getting them sent to Dr. Saturday ended up being like pulling teeth. You know, I asked Rheumy's office to fax them to Dr. Saturday. They said that they had faxed them, and asked me to confirm with Dr. Saturday. So I called Dr. Saturday's office. Note: each time I say, "called their office," it means that I called, listened to the menu options, pushed the button, talked to a front desk worker, they send a message to the nurses, and then I wait for the nurse to call me back. This definitely contributed to my time on the phone for medical-related purposes this week. ;) Dr. Saturday didn't get it. Called Rheumy again. She faxed it again. Dr. Saturday didn't get it. Called a third time. They faxed it a third time. Called Dr. Saturday a third time. I may have mentioned that his MA is "Missinformation." "Nope, still didn't get it. Oh wait, our fax machine is out of paper!" Hahaha... fail.
The labs ended up being okay... not horrible, but not perfect. I ended up coming in to see Dr. Saturday on Wednesday. He was concerned with the obstructions, too. He ordered an MRI to make sure that nothing was going on. This was the exact test that would give me peace of mind, so I was so thankful that he ordered it. While I was waiting to get scheduled for the test, an older gentleman came and sat next to me. He asked me, "You getting a colonoscopy, too?" Without thinking, I answered, "Um, no, I don't have a colon anymore. But before they took it out, I had over a dozen colonoscopies!" I think I shocked him. I gave him a few tips on making the prep slightly less yucky. ;)
I called the MRI place today to see if they had read the report - I just didn't want to go into the weekend not knowing what it showed. I know I'm being an over-concerned patient, but I think I've earned that right at this point! They said that the doctor should already have it. Dr. Saturday is really, really good about calling right away, so I thought this was weird and called their office. Missinformation told me that they didn't have the report yet. I politely disagreed, and suddenly, she came up with the report. ;) Thankfully, the MRI turned out just fine, except for the huge cysts I always have. This was a HUGE relief to me. Of course, why I'm having all this pain and stuff remains unexplained. Dr. Saturday told me to wait it out til Monday, then call and give a report on how I'm feeling. Hopefully this is nothing and will just clear up...
I am having a really terrible time with Edgar. The tape is simply not sticking to my skin. So it's leaking - which, in addition to being very gross and messy, basically defeats the purpose of having Edgar. If there's no seal, you can't have a vacuum! My skin is also incredibly itchy, red, and bumpy, and burns like crazy. It's keeping me up at night (through my cocktail of night meds, which is impressive!). I will be honest here. I have a pretty high pain and annoyance tolerance. But I have a very low itching tolerance. So, I'm pretty miserable. If I'm not leaking wound juice and blindly re-taping (very funny to watch, I'd imagine!), I'm trying to not scratch the giant welt that is my skin anywhere the tape touches. Thankfully, the wound continues to close up - only 2.8 cm deep this week! It has closed up 6 cm! The length has also shrunk by 6 cm!
So... to finish off with the goodness of God, after all those telephone calls, I get a call on Thursday evening. To my great surprise, my new insurance WILL cover quite a chunk of the cost of Edgar, the nursing care, the wound doctor, and supplies! This is NOT what the policy indicated, nor what I had found in my phone calls... but it is true! This is a HUGE blessing and I am rather flabbergasted! God continues to surprise me with His goodness and faithfulness! I am also so blessed by the people at church who are willing to help cover the cost of Edgar - WOW!
Just wait - it gets better! Let's talk about God's timing! I have a two-day lapse in coverage next week. Paying for wound care and Edgar rental would be just a ridiculous sum, even for those two days. Well...remember how my skin really needs a VAC-action? I will stay hooked up to Edgar until my current insurance runs out (or until the dressing falls off, or until I can't stand the itching for another minute) on Sunday night. I will then unhook from Edgar and unpack the wound myself (which should be interesting), and NOT pay for Edgar for those days! When the new insurance kicks in on Wednesday, I'll return to the wound care clinic, get the wound packed, and resume therapy with Edgar. The days without Edgar will be very yucky and messy and painful as the wound will just be open and oozing - not quite sure how I'm going to manage this - but hopefully my skin will benefit from the tape-free time.
The best part of all of this is that God has given me two opportunities so far to share the gospel with people because of this. He is so clearly being glorified as He provides!! Praise His name. As I shared with a friend today, the most important think He provides is not a woundVAC or physical healing... it's the forgiveness from sin and right relationship with Him that came about through Jesus' death and resurrection.