Well just mark me way past due on an update. Geeeeezzz. So, yes, we celebrated the 1 year re-birthday of Keith on July 22, 2023 but I think I actually made it here to post about that. Thank you all for the congratulations & well wishes that we received! We definitely celebrated that anniversary! And now for the updates.... you might want to pull up a lounger and get a snack. This is going to take awhile. 

It's a long (and boring) story to get into here so I'll try to just give the highlights. Basically, we lost our insurance in September and for a short amount of time we had no insurance which meant that Keith was not able to receive his monthly maintenance treatment. HOWEVER, he has the MOST AMAZING DOCTOR! And here's why...

Keith stopped by the clinic to cancel his appointment and get some info. While he was there, Dr. Herbert just happened to be nearby and said hi. Keith told him he would not be at his appointment the next day. Dr. Herbert asked why and Keith explained we didn't have insurance at the moment. Dr. Herbert waved his hand and told Keith he was welcome to keep his regularly scheduled appointment with him if he wanted or needed to discuss anything. He couldn't do anything about the drug portion but if we had questions or wanted to still meet we were welcome to do so at no cost. So, we kept the appointment. We went over Keith's latest labs. We discussed what missing this month's treatment means (I'll get to this in a bit) and we asked some questions. At the end of the visit, I asked Dr. Herbert how much we owed or how we needed to handle this appointment. He looked at me and said "I told Keith yesterday I wouldn't charge you. I can't help with the drugs but this here is just time. I can give you that." Wow. What a kind, generous & understanding man. I had to share because you just don't hear stories like that much anymore. Thank you Dr.Herbert at Nexus Healthcare!!!

So, back to missing his monthly maintenance injection. Dr. Herbert said it's not a big deal. He said the previous treatments & the stem cell (bone marrow) transplant got things under control. The monthly regime is to help stay ahead. Missing a month is not something to worry too much about. "Don't worry. Be happy." In fact, there are no hard or fast rules on the maintenance prescription. I think I've mentioned this earlier but doctors just don't know for sure what the best method is following SCT (transplant). Some doctors don't do any maintenance. Some say do it forever and others fall in-between. Dr. Herbert is a fall in-between guy. He suggests continuing for 2 years post transplant and then we'll re-evaluate based on new data, Keith's labs and make the decision together. "So happy together."

Speaking of labs, last month's results still look good. Keith is still losing some protein but the graph continues to move in the right direction so he's not too worried. Again, "don't worry. be happy." Keith will be due for another 24 hr urine analysis in October (oh joy. Another weird jug kept in the fridge. It's still gross. Sorry) and the hope is it will still be improving. Otherwise, numbers look good and he continues to show no signs of active disease. 

Meanwhile, back to insurance..... we were only without insurance for like a week, maybe two. We now are "covered" but still trying to figure out exactly what the insurance will be "covering," how much we will have to pay now and all that jazz (no time for Roxxy Heart right now). Keith is still scheduled for his October appointment with the dr & treatment. He has been pre-authorized for the dara so he should't be missing this month. What we don't know is how much of that we will have to pay. It all depends upon the coding and how they view this relatively new drug. Worst case scenario, based upon estimates we've heard about the costs, and the insurance split it could run us $2000...... each month. Or, best case scenario, and the one were on planning on and will fight for if necessary, is almost all of it will be covered minus a minor co-pay. Right now we are still making calls and trying to get some answers. In the meantime, I am tentatively scheduling appointments for plasma donations in case we need money for payments LOL 

Before you say anything about the insurance process in this country, think about this..... no, it's not perfect and there is much that could be better & changed. HOWEVER, something I was not aware of until recently, if we were on a 100% total socialism type of system then Keith would not be able to receive this life saving drug at all as it's not approved in other countries. Socialist medicine is wonderful in many ways but only if you fall within the bell curve. If you have a rare disease, like Keith does, and fall on the fringes of that bell, you do not necessarily have access to the same drugs or care that we have in the United States. I AM NOT TRYING TO MAKE A POLITICAL STATEMENT HERE. I am simply pointing out something I learned thanks to the Amyloidosis group (hoping I understood & explained all that properly) and focusing on the positive. Finding gratitude in all aspects. Remember, don't worry. BE HAPPY! Have you figured out the theme to this month's post? teehee

BREAKING NEWS (today): Keith has been having a bit of an intermittent yet kind of consistent dry cough lately. He says he doesn't feel bad but can tell he doesn't feel quite right either. Maybe a little run down. No fevers but did have a couple bouts of diarrhea upon exertion. Nothing specific really to point to but as I told him, he knows his body better than anyone else. So he called Dr. Herbert's office and spoke to the triage nurse. She passed along the info. Keith received a call back with the message that Dr. Herbert would like to schedule a CT exam to rule out anything serious. Wow, we are really putting this new insurance to the test now, aren't we? To be continued......

In every life we have some trouble
But when you worry, you make it double
Don't worry, be happy
Don't worry, be happy now