Thursday, June 30, 2016

A brief timeline

It's hard to believe that it has been almost a year since I applied as a candidate for this trial. It look a few months for my application to be reviewed and then I broke both of my arms (yes, both at once- thanks to all the steroids I have had to take to combat my relapses I now have brittle bones) so I didn't go in to Northwestern for an evaluation until Thanksgiving. We switched insurance at the start of the new year but didn't find out the plan details until February which is when were able to finish my evaluation. Since then I have been going down to Chicago every few weeks for testing.

Yup, that's a broke arm

I have had some allergic reactions to antibiotics before so there was a lot of testing to find out what they could give me. Good news though, it looks like it is now safe for me to have Keflex and pencil. They were all worried about this sinus infection I have had for probably about two unsympathetic years but I guess if the infection were to flare up while my immune system is depleted then it might kill me and that could be bad. 👻 I ended up having to have surgery to try to clear the infection...which it did but now I have a different type of sinus infection 🤕 The Infectious Disease department cleared me for transplant and now we have a plan moving forward for what antibiotics I should take.

I completed the last of the pretesting without further complications. A million tests were run and things came back pretty normal. There is even a test called the "Burt Series", not sure what it is testing for but I think it's cool that my doctor has a test named after him. Interestingly enough, we discovered that part of my lung isn't fully developed but we aren't supposed to worry about. Um ok well  I ended up having to stay in Chicago longer than originally planned
note to those going through pretesting in Chicago -- they will make you do a 24 hour urine collection. It has to be refrigerated the whole time, you can't drink alcohol before or during the test and they would prefer for any contrast dyes to be out of your system. They may not tell you any of this until you turn your collection in and you find out that you have to redo it. While it is also possible for someone else to turn in your collection for you, you may get scolded because there is a blood test they need to do at the same time that wasn't mentioned before.--
but it was really nice because I had more time to meet some other people going through the process. If you are going through this process I strongly suggest taking the time to physical meet some of the people. The Facebook group has been awesome but it's even better meeting these people in real life. It has been nice to meet up and talk with people even if it is just meeting them at labs. My HSCT brother did a really good job summarizing  how I felt after the week of pretesting in this video.

Now that pretesting is done, I will moving onto 2 weeks of mobilization. I will be getting my first dose of chemo during this time and then having my stem cells removed.

Below is an overview of the procedure timeline:

~Initial Evaluation (1-5 days) *Lodging required ✔️✔️Completed November 2015
~Pre-Transplant Testing (1-2 Weeks) *Lodging required ✔️✔️Completed June 2016
~Mobilization/Harvest Autologous SCT (10-14 days) *Lodging required Admission to the hospital for one night only to receive chemotherapy (cyclophosphamide infusion). For the remainder of the stay, appointments and procedures will be outpatient. 🔜☑️currently in process June 2016
~Stem Cell Transplant (approximately 16-21 days) Patient will be hospitalized for the entire stem cell transplant admission. A caregiver is allowed to stay in the room with the patient. There is a pull-out couch to sleep on and showers available for use in the hospital. Upon discharge, patients will need to arrange for housing if not going straight home from the hospital. 🔜July 2016

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