Thursday, August 11, 2016

A Towering City Of Disappointment - Health Update

This week I made my promising trek to Los Angeles to visit a prestigious HSCT (Hematopoietic Stem Cell Transplant) doctor at City Of Hope.  A few weeks ago I had contacted this physician by email and he became extremely interested in my case. He asked if I could fly down and meet him in person for in depth consultation. I received a call from a new patient coordinator the next day, received my appointment date, and booked my flight immedietly! Fast forward to Wednesday. I traveled to COH alone because it was a very last minute ordeal. Everything moved so quickly that it didn't give my family adequate time to save for the trip, request work off, or find pet sitters. So, I waltzed into the giant campus by myself, ready to hear some good news from this physician I was so very ecstatic to meet. The paper work said to arrive at 930am for an 11am appointment, so I figured there would be some sort of blood work, testing, or pre-consultation. I arrived promptly and was given a very kind patient advocate, but told there was nothing happening with my care until I saw the physician at 11am.

Wait what?! They expected my already anxiety ridden self to arrive two hours prior to an appointment and just wait?! Why they do that to patients is beyond me...

So I waited, and waited, and waited. By 10:30am I was extremely nervous and antsy, and by 11am I was almost in tears. By 11:20am and still no appointment I was having a full blown anxiety attack and trying not to hyperventilate. I know that all seemed to escalate quickly, but when your life is riding on an appointment and you have had nothing but blank time by yourself to think about it, the mind goes to bad places. I finally went up to a desk and asked what was going on and they just said, "they will call you back shortly." By 11:30am I was called back to a room with a physician who obviously wasn't the one I had emailed. RED FLAG #ONE. This physician told me he was on the same HSCT team and that the other physician I flew all the way to California to see, said this doc could see me instead. Not cool. Since I wasn't about to get up and leave I started asking questions. I wanted to know about their former Scleroderma patients and how they fared during the HSCT. He expressed they had only done three and every single one had ended up in the ICU for upwards of 2-3 months, half dead, drowning of blood in their lungs. RED FLAG #TWO He told me that they were able to pull every patient back from the brink of death however, and that they were doing okay now -- Those aren't good odds if you ask me. 

With in the first few minutes he told me I was a great candidate and fit all the criteria! He actually also expressed that my body wouldn't make it another year waiting for a transplant, and that we needed to move forward as soon as possible. It was an overwhelming YES! However, he then asked when my last appointment was with Doctor X (name withheld) at UCLA -- "Um never." I replied "Why?" He then went on to explain that I cannot have a transplant at COH without being a patient of Doctor X first; that I would have to become her patient if we wanted to move forward. RED FLAG #THREE

....You mean to tell me I was supposed to get an appointment with another physician at a totally separate hospital before coming to see the doctor who I didn't even get to see at COH?! And no one told me that?! 

So even though I was a yes from their transplant team, I couldn't do jack because no one on the team bothered to tell me I needed to first get an appointment with a physician at a totally different hospital. Why the hell did I fly to California then?! The doctor who I was "consulting" with basically just apologized for "wasting my time." and that if I wanted to fly down again in a few weeks to see that other doctor at UCLA I could come back and re-consult the same day at COH. Probably the most unorganized visit I have ever experienced in my life. The entire orchestration was not up to my standards for a hospital that will literally be holding my existence in their hands.

So lets look at these red flags a bit close:
1. I never even got to see the physician I specifically booked a flight to meet.
2. Everyone of their scleroderma patients have been in the ICU on the brink of death.
3. They weren't even organized enough to realize I wasn't a patient of the physician I had to see before I came to them -- even though they had all my medical records. Did they even read them?

For these obvious reasons I am ruling out City Of Hope for my HSCT. Don't get me worng, the physician I saw was lovely and kind; he genuinyl wanted to help but, I need a hospital that doesn't have their head up their bum if I am being frank. I am of course disappointed I wont be able to have the transplant closer to home, but I am also very grateful I had this experience to rule out the poor choice. I will not wonder "what if?" I know that this door is shut so another can open. Thankfully I have been accepted at Northwestern Memorial Hospital in Chicago for a consultation. I should receive a call next week to schedule my tests/appointment. Luckily, it's pretty comon knoledge that that if you are a candidate by STAT trial standards you will most certainly meet criteraia for the ASSIST trial! I of course have to get the absolute yes from the physician, but I don't see how I wouldn't be accepted. Woohoo! I am finally moving forward and am ready to bump up my fundraising goal to assist with transplant costs! Your assistance will help fund travel expenses to and from Chicago, housing for the duration of the transplant process, and medical expenses not covered by insurance. As I am not 100% sure of the complete cost currently, the goal may change in the future. 
Please visit the link to help save my life!


  1. You've got to be kidding?!!! How frustrating. I'm with you, strike that one off the list! Just learn from this experience and the questions to ask next time and move on! Good luck!

  2. I am so sorry you had to endure such a clusterf*^^. I had a stem cell with Dr Burt at Northwestern in 2007. I was enrolled in the SCOT trial, going thru the testing when I went to hear Dr Burt speak. I knew within 2 minutes of hearing him talk that I wanted to be with him. I dropped out of the SCOT trial immediately (I had never felt at peace with it.) Dr Burt is one of the kindest, most intelligent human beings I've ever met and he (and his team st Northwestern) saved my life. Chanel, I truly hope that all your persistence and disappointment is leading you to the right outcome and that Dr Burt can help you get there.

  3. You're lucky your alarm system was working!!!

  4. Chicago will greet you with open arms and respect for you and your time! Northwestern is an amazing will be in good hands. Sending positive thoughts and prayers that you get the answers you need!

  5. Chicago will greet you with open arms and respect for you and your time! Northwestern is an amazing will be in good hands. Sending positive thoughts and prayers that you get the answers you need!