Wednesday, April 6, 2011

04/06/2011 3.5 Hours of Neuro testing!!! Don’t they understand I’m seeing them BECAUSE my brain is fried!

04/06/2011 3.5 Hours of Neuro testing!!! Don’t they understand I’m seeing them BECAUSE my being is fried!

So the point of this blog is not to just talk about my boring everyday life, but to talk about my transplant life and what is going on with it, it may seem mundane and boring, but I think I get to do a lot of things that I would have never have done without the transplant.
So today started out with my mom taking me to by friend Kara’s house because I left my HUGE purse in her car last night (which included my driver’s license, debit card, and health card). This was just more proof that I needed to get tested by the neuropsychologist-which I went to next. Basically, a neuropsychologist tests how you think through many different kinds of testing (like reading back numbers in an order, doing math in your head, using building blocking to make a shape, draw abstract ideas, etc.). When I first got there they had me fill out a 16 page survey before I even met with the neuropsychologist, 16 pages!!! It asked everything from if my mother had a normal pregnancy to if I had migraines. And then came the 3.5 hours of testing.
I won’t get the results for a few weeks, but they are supposed to be able to be used as a tool to help with my learning and going and back to school so I am excited to get the results.
After I picked up some “goodies”…some Gabapentin…from the pharmacy (it’s for the nerve damage the was caused during my surgery and is in my hands and feet), but even though I did not have to wait in line for it and had to order a TONE (the tech could not believe I was getting that much) I did not have to wait more than a minute! So they were goodies-especially since have been out for 3 days and I am getting SORE!

Tuesday, April 5, 2011


Last week some major milestones happened. On Saturday I biked 50 miles!!! Would have never thought I would be able to do that. I would have never thought that I would be healthy enough to bike that far and that hard, and unless Lance Armstrong is telling you he did it, biking 50 miles is pretty hard to do. The total miles for this week were over 120 miles!!!

Earlier this week I also had a MAJOR spill on my bike and I think I cracked the top layer of my sternum. They doctors are not sure what is going on with it and have done numerous tests, but the bottom is still held together, but there is definitely a hole in my sternum going the length.
I had my first 3 month follow up with the heart transplant clinic; this is the first time I have been able to stay away from them for more than a month! I have always felt sick in a month and felt that uh-oh feeling that I just needed a checkup, but this quarter I told myself there was no way I was going to go in with in the three months, and I made it! And I got a 23 (on a scoring range of 0-34, but anything under a 34 is good) on my Allomap, this is the lowest that I have ever gotten!
Natalie a lung transplant patient and transplant buddy passed away this Tuesday afternoon. She was 33 years old and was an amazing person. She graduated from college while undergoing chemo for non-Hodgkin’s lymphoma, the effects of the treatment ultimately cost her, her lungs and then her life, but she always lived her life to the fullest and was such a sweet girl and was one of my first recipient friends I made at the donor network while we volunteering at many events.
Even since my many notes that I wrote to my donor family in December I have been meaning to write again and just get an update. When I came into the clinic my social worker gave me a note from my donor’s family! It had a picture of my donor, Ruben, his older daughter (who is 9 years old and the mother of his children) (he also has a 2 year old daughter) and another picture with his mother and his 2 brothers and 3 sisters. I also found out Ruben was 36 years old when he passed. It was somewhat hard to get the letter because without the letter I could always think of him as a single being (without a family, children, etc.) but now that I see that he a regular person and I could relate being a donor to someone I know, which is a great but scary gift. Rubens final resting place is in Colima, Mexico where his parents live. His sister (who was his next of kin) is still in Fresno, and she would like to meet with me but I am not sure about his daughters or other family members.