Sunday, February 2, 2014

Week in Review - 1/21/14

Here's my second week in review... so far so good.

Nicole started her second semester of college on Monday.  She is taking Analysis of Form and Composition for the Artist (I believe this is the name or it could be of the artist).  I think she's had a little bit of a problem getting back into it especially if it is an assignment she doesn't want to do.  She has to do an artist biography of herself which she's not looking forward to.  Her assignments are due on Sundays at 12:00 midnight pacific time.  I wish she wouldn't wait until the last minute but it is her decision and she has to live with it.

Nicole saw her counselor  on Tuesday and all three of us talked about the issues with the transplant center and how Nicole was feeling about that.   She was still in some pain so she didn't go to rehab and we went back home and she went back to sleep.

On Wednesday, Nicole received a certified letter from the transplant she's been seen at.  Nicole had sent an email to the pre-transplant coordinator regarding a letter she received that was dated Dec. 19th but was not postmarked until Jan. 6th and we got it on Jan 7th.  The letter basically stated that the center did not have to give a reason why they would not list a patient according to OPTN which I thing is wrong, wrong, wrong.    It was also stated that the delay of the letter was due to the holidays. I'm sorry but that is a poor excuse considering it was a 19 day gap between the date of the letter and when we received it.  The date of the certified letter was January 24th but it was postmarked until January 28th with us receiving it on the 29th.   To say that I am angry about the letter is an understatement.    I am not going to say anything more about it and we move on to another center and hope that things go better.  Nicole has two appointments schedule for Feb. 21st and March 3rd.   This same day we received a packet from the new center with paperwork to fill out.

Thursday Nicole had to get her monthly blood work done.  We are still waiting on the results of that especially for her platelet count, potassium and magnesium levels.  We waited in the lab for 40 minutes before she was called and there was only two people in front of her.  We were able to walk down the hall to radiology and request a CD of her last chest x-ray for the transplant center and they had it ready before the lab work was complete. Nicole then went  back to rehab for the first time since before her site change on January 21st.  She didn't do well and her monitor kept beeping because of low oxygen saturation levels and how know how much she gets frustrated by this because she wants to be able to do more.  I hope that it was just because of the cold weather.  It is suppose to be warmer this week so I am hoping this will help.

Overall, it was a good week other than the stress of  having to start over with the transplant process.  It breaks my heart that Nicole has to go through this.  It also infuriates me that a medical professional will give an opinion about a patient and base it on the few minutes (20 - 30 minutes) they see this person every three months especially when they have no reasoning for it.


  1. Hi Jane! My name is Cameron and I was wondering if you would be willing to answer a quick question I have about your blog! My email is cvonstjames[at] :-)

  2. Hi Cameron:
    I tried to send you an email but it came back undeliverable. If you want to ask me a question you can either ask here, look me up on facebook (look in my signature on how to do this) or email me at

    I would be more than happy to answer any question you have.

    Jane~mom to Nicole, VSD, PFO, Eisenmenger, PH, BHJS, ITP
    Find me on Facebook at
    Look me up on Twitter at phmomma21
    Check out "A Day in the Life" at
    "If there ever is a tomorrow when we're not together...this is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you." A.A. Milne
    Please consider becoming an organ donor. Check out