Falling Through The Cracks

 I appreciate all the kind words, well wishes and especially your prayers during my latest adventure with America's Health Care System. You may call it Obama Care, but I call it the Moe, Larry and Curly Care. In a nutshell, I have esophageal cancer which will require radiation, chemo and surgery to remove the damaged portion. Food and water can't make it to my stomach at times and makes me a joy to be around when I'm hungry and dehydrated. Open Facebook or watch TV and try not to see a delicious recipe for food you can't keep down. There is a plan to fix it, but getting that plan executed has been an adventure.

Back in late January, I began having problems with keeping some food down. My regular Doctor diagnosed it as GERD, or Gastro Espohageal Reflux Desease, which seems to run in the family. She advised me how to manage GERD and I got a little relief. However, it seemed some foods triggered a reaction and some did not and it didn't make any sense what worked and didn't work. The first food I identified as a trigger was french fries and some breads.

During Mom's funeral in February, I was able to eat most of the home cooking the community provided the family and I will always be a mamma's boy for home cooked meals. It was devastating and an emotional time, but I was able to eat OK.

In March, I had a run of 12 days straight that I could eat breakfast, but would lose my pills I took afterwards. I also noticed the timed release Metformin I was on was coming up intact and identifiable. My Doctor agreed I should stop it for a while. Still, meals were hit or miss, so I went to the Emergency Dept at Wake Med in Cary. They put me on a acid reducer, or Proton Pump Inhibitor and I was able to eat for a couple of days. They also got me an appointment with a Gastroenterologist and I met him and we planned an endoscopy and colonoscopy exam together. Now it gets gross. The "prep" for the colonoscopy is to drink a gallon of foul tasting juice to clean out the colon.

The gross part is I was so dehydrated, the output tunnel was blocked and the poop juice had to go the other way. I can honestly say it tastes worse coming up than going down. I spent the entire night with severe abdominal cramps and barely passed anything, so it was just a miserable night running every 20 minutes to do nothing. It's also a taste you can't get rid of for several days.

On may 6th, we did the endoscopy and he found my esophagus was severely restricted and he could only stretch it out a little because it was so inflamed. He also took a couple of biopsies and said I'd have the results in 7-10 days. The amount he was able to stretch the tube was enough that I could eat some foods. I later discovered shredded foods worked fine, so I survived on fish, crab cakes, barbeque pork and mashed taters. Even odder, buffalo wings, pork chops and ribs worked and I learned I could eat tater tots and hashbrowns, but still not fries.

I never heard back on the test results, so two weeks later I emailed the Doctor to ask what was up. His answer was to come in for a visit, so right away I knew that was not good. Now, you don't get an appointment when you need it, so it was the 24th before I got to sit with him and he broke the news. The next step would be another endoscopy to stretch it again to regular size and to do a unltrsound to see how deep the cancer is. Since he does not do the ultrasound, he referred me to a Doctor at Wake Med.

This Doctor's office called right away, and after asking a few questions decided I needed clearance from my Cardiologist before they would schedule an appointment. Even though I just had the procedure, and even had a EKG done at Cary's Emergency Dept., my cardiologist refused to sign off until he sees me since it's been over two years since my last visit, which included a stress test which showed no issues.

I lucked out and got an appointment on June 7th at his new office at Wake Med in Briar Creekat 3:00 and was given explicit details on where it is and how he had closed his other office on Six Forks Road Helath park and would soon be closing his other office on Six Forks at Park Place, which is a few blocks away from my work. I show up to an empty office with no lights on.

I called the other office and was told that is where I should be and he was leaving the office at 3:15. Pissed and fighting US-70 airport traffic I said I could be there in 20 minutes. The lady at the desk refused and rescheduled me for the 15th. I also have an appointment with the Oncologists that afternoon, so it will be another Doctor Fest. So let's review, the new GI will not schedule an appointment until my cardiologist signs off on my ability to endure a procedure I went through a few weeks ago.because they have different policies for procedures to follow. OK, I'm a patient person.

On June 4th, I started having trouble getting food and water down. The only way I could get any fluids in was to turn up the bottle and guzzle it like someone that's been in the desert and some of it would stay down. It was obvious to me my esophagus has dilated again and I needed the second stretch to get relief. You know, the one I can't get scheduled, blah, blah.

Thursday night after work I was so weak I had to go to Wake Med, park myself in the Emergency Department and say "deal with me". And they did just that. As luck would have it, my new GI Doctor was "on call" that night and after two calls from the ED Doc, never answered his phone. They came with me with two of the most ridiculous options I have ever heard: go home and schedule the procedure when the GI Doc is available, or be admitted to the hospital. They finally admitted me at 2:00 AM on Friday morning, because I did feel better getting a bag of "Gin and Juice" through the IV, I was not leaving. I had my first CT scan, and lots of blood tests, and finally got word the GI doc would do the endoscopy on Friday. As expected, he stretched it again and I was able to "eat" delicious broth and even green Jello wasn't that bad. I was again lucky that I did not take my blood thinner or any pills, so everything went fine.

Naturally, nothing really happens on the weekend, but I was visited by several Doctors for their billing purposes. My new Oncologists are at Duke Raleigh Hospital and they visited twice each day and were trying to get everyone on the same page. Actually, both of them were apalled my treatment has been derailed and delayed this long. She said they usually attack this as quickly as possible after a diagnoses and are very concerned that none of my team has sat down in a group to discuss this. She promised the entire Duke team would meet me tomorrow to get things started.

The Wake Med Hospitalist Doctor also came by twice a day to let me know what was going on, and he too said he was going to make sure each of them got together on the plan. The result was that two Doctors from the GI office did show up and said they did their part and see ya later. That threw the Hospitalist Doctor into a rage that matched mine.

So on Monday, we decided I should get a port catheter placed and a feeding tube in case I couldn't eat again. They had them scheduled, but one was at 7:00 am and the other at Noon. My Nurse said they were trying to schedule them together. Later that afternoon, she told me the feeding tube was not listed and they would come get me to do the port. Now keep in mind, I could not have food or water since midnight. At 3:00 they came to take me to install the port. I missed breakfast, lunch and dinner because Moe, Larry and Curly couldn't get on the same page.

Now the Hospitalist had prepared my discharge papers in the afternoon, but when the Nurse went to execute them, it was blocked by some change that was made. By now it was after 5:00 PM and everyone had gone home. She busted her chops to find someone that could fix it and get me out of there. We went to K&W and I actually ate food. This morning my neighbor brought over a big plate of ham biscuits, which I ate right here on the porch. At least the birds are signing their wake up song, instead of the theme to "The Three Stooges".