Well, to say the last two weeks have been emotionally and physically tough would be a great understatement.  This post will give a brief medical recap and a timeline of our current situation.

• 03/23 - I was diagnosed with chronic rejection after lung function tests revealed a sudden and significant drop in my lung functions .  The specific diagnosis is BOS - Bronchiolitis Obliterans Syndrome, and average life expectancy is 1-3 years. My lung functions from that time until 11/2023 continued to decline.
• 12/11/23 - I began receiving a prescribed series of photopheresis treatments in hopes of slowing the progression of the decline. Treatments were twice weekly for the first 6 weeks, and were gradually spaced to twice a week every month. The plan was to complete 22 treatments, and if lung function testing revealed my lungs had remained stable, the treatments would continue twice a week every month for one year.
• 05/04/24- as of this date, I had received 18 treatments of 22 total.  My lung function tests during this time indicated the decline had stopped, and on the most recent test showed there was even a slight increase! (see chart in photos).
• 05/01/24 - Suddenly and abruptly, I was dropped from the program! No call, no warning.  I was scheduled to receive my next photopheresis treatments on May 2nd and 3rd, and I called to see if there was an opening earlier in the day on Friday. I found out from the scheduler ALL my appointments were cancelled, even my future ones. After many phone calls to everyone imaginable at the hospital, no one could tell me why.  When I called  my insurance company with Medicare, United Healthcare Advantage, they told me they had no record of denial of coverage for the treatments. I was hoping it was just a simple mix-up. However, when talking in person to those at the hospital, we found out Medicare had never approved coverage! Therefore, the hospital hasn't been paid for ANY treatments for me or any other Medicare patient who has been getting them! Because of this, the hospital has canceled any further treatments for anyone on Medicare.
• 05/03/24 - Determined to get to the bottom of this, Tamara and I drove to Methodist Hospital to search for answers, thinking we may have better luck if we were there in person knocking on doors (This, by the way, was the birthday of our late son, Brandon.  Not a good day to be visiting the hospital where he passed away.)  The results of our efforts were minimal other than making initial contacts with the proper persons/departments.  We did discover, however, the hospital learned of their error back on April 12! We were never notified by anyone at Methodist.
• 05/07/24 - I met with my lung transplant doctor, the manager of the lung transplant department, and my transplant coordinator. (I had requested my clinic visit for June to be moved up so I could talk in person to about the situation.)   Before meeting with the doctor, I received routine tests that revealed my lung functions had increased.  Tamara and I were elated! However, I was told if I was to continue with treatments,  we would have to personally pay for them.  That night while I was researching more deeply for answers/solutions,  I found out hospitals in other states who offer photopheresis for lung transplant patients are getting paid by Medicare!  After more phone calls back and forth with Methodist, it seems that they had made a mistake in coding. They said they would appeal to Medicare. We hoped this would solve the problem.
• 05/09/24-  I heard from Methodist that my treatments were denied again.  This was hugely disappointing.  My treatments are time sensitive, and we are feeling also anxious. I decided to send my United Healthcare Advantage plan information as well as my lung function test history to Mt. Sinai Hospital in NYC., where the former head of Methodist lung transplants is now chief of all transplants. Their head of finance began investigating my entire case and indicated I would probably be approved there.
• 05/10/24-  I received confirmation from Methodist that cost of treatment would be approximately $26,000 per month. I asked Methodist to have someone contact me regarding the exact cost and financing options; no one has returned my call - I’ve only heard crickets or cicada!
• That afternoon I received word from Mt. Sinai in NYC that it looked like I had been approved by Well Med and United Healthcare for the photopheresis treatment.
• 05/13/24 - While waiting for verification to receive the treatments in NYC, there are two other hospitals being investigated as possibilities here  in Texas. This would be much more doable at far less cost than travelling to NYC.
• 05/14/24 - Unfortunately, I received word that my treatments are not available for coverage at the Texas hospitals.
• 05/15 Today as write this, I am discouraged with how little progress has been made in two weeks, despite how much time and energy I have spent trying to find answers and solutions. So much of this simply doesn't make sense! Tamara and I are exhausted in ways I cannot explain. The up and down, life or death struggle we have been in has taken its toll. 

My thoughts (or perhaps a rant): 

Being denied a treatment that is proving beneficial to the point of stopping the rejection is just mind- blowing! Our great and wealthy country should be able to adequately fund and manage healthcare for its citizens and not reject medications or treatments that are working for patients. I may be able to get coverage in a hospital in another state, and I'm fortunate to be able to travel to get treatments; it is unjust and unfair to those who cannot afford to travel elsewhere.  More thoughts ... If we have to pay for the treatments ourselves, we will be forced to use savings and sell everything we own to afford to extend my life. How do we make this decision?  How do we know how long we might we pay? Is it months or years? And what amount of time I might "buy" to extend my life is worth leaving Tamara without the financial means to provide for herself later? And why are people are forced to make these kinds of decisions?! 

Now I know what some of you might want to preach at me "God's got this, and he's promised you'll be healed."  Well, I don't believe that.  I believe he CAN, if he chooses, but sometimes he says NO, as he did in Brandon's case.  It is not my death that troubles me, but what of my family who are the ones left behind to mourn?  Our current situation is as real as it gets. Hence, our emotional, spiritual, and physical exhaustion.