Yesterday morning I went to have my first IV treatment to reduce the antibodies in my blood. Lee went with me and for some reason I thought it would take around one hour....we were finally finished at 2:10 in the afternoon!
These treatments are done in the oncology treatment clinic and I was quite impressed with the way they have things set up. I arrived at Clinic 2A (took me 15 minutes to find the place!) and told the receptionist my name and that I had an 8:30 appt. She checked me off and gave me one of those vibrating beepers like you get at The Outback Restaurant...I'm not kidding...it made me chuckle to myself. But it really was efficient. No one had to have their name called out and when yours started to beep you just took it to the nurse across the hall and she greeted you by name and took you to your table - ok, your bed.
My nurse, Brenda, was super. Not only was she really nice, she started an IV in me on the first try with no pain...that is an absolute first!!!! I asked her if she could come to all my tests where I need an IV put in but unfortunately she's pretty tied up in oncology.
The medicine I am getting is called rituxan - or rituximab - and it's used primarily as a chemotherapy drug for people with lymphoma. I am receiving it because it also kills off the b cells - whatever they are - and help to get rid of antibodies that would cause me to reject donor lungs. The first course of treatment - there are four - is done very, very slowly to see if I am going to get a reaction. They always start the treatment by giving you IV benadryl and IV solumedral (a steroid) and two tylenol. I don't know why they do that but it's protocol so I go with the flow. I did really well with the medication and didn't have any reaction. Because of that, I'll only need two to three hours next week.
Today I went to the GI Special Procedures Lab (doesn't that sound impressive!) for a motility test (can I swallow right) and a ph test (stick a probe down my throat for 24 hours to measure acid in my stomach). Well I didn't read the fine print and didn't stop taking my acid reflux meds. Because of that they were only able to do the motility part of the procedure and I go back next Monday to have the probe put in for 24 hours.
I hadn't eaten all day because of the GI tests so we went to lunch in the food court in the basement of Duke South (all the clinics). I use the word food court very generously because it's just nasty :-( They are going to be opening a Chick Fil a express soon and that will definitely be the highlight of the food court. We're going to have to branch out and find some other places to eat around the clinic and the hospital or Lee will starve while I'm in for my transplant! That would be an unpleasant way to lose weight!
While we were downstairs Khara (pre-transplant coordinator) called and asked me to go back up to Clinic 2F (pulmonary) and sign my consent forms with Dr. Zaas. So we hiked back up there and waited our standard time before they called us in. The poor coordinator who was working clinic today didn't know how to work Microsoft 2007 (where's the menu across the top????) so she was having a lot of trouble printing out the forms for us to read over before I signed. Finally success! She brought them in and then Dr. Zaas came in to talk with us about them. The first one basically states I want Duke to be my transplant hospital. The second one says that I agree to make some lifestyle changes and go to rehab and go to clinic and take my meds etc.
The last one discusses "high risk" lungs...I needed to decide if I was willing to accept lungs from a donor that the CDC termed high risk. Dr. Zaas talked about this with us for quite a while. Of note is the fact that the CDC is currently changing its criteria for high risk because the definition as it stands now includes an awful lot of people that aren't high risk. Duke hospital requests every donor lungs be tested for HIV, Hepatitis A, B and C and a couple of other things I can't remember. If any of those tests are positive the lungs aren't accepted. They are told if the donor falls into the high risk category and if all tests are fine, Duke will accept the lungs. Approximately 15 percent of all donor lungs come from high risk donors as the definition now stands.
Dr. Zaas said that we have the choice of accepting high risk lungs or deciding not to accept them. Either way was fine with him but we need to stick by whatever decision we make. If we say no then I wouldn't be considered for transplant unless the donor was from a non-high risk group. If we say yes then I will be told if my lungs are coming from a high risk donor but I will not be told why the donor fits the criteria. That is to protect the privacy of the donor family. He wants to make sure we understand what we are agreeing to because last year he had a patient who had agreed to accept high risk lungs and Duke asked for the lungs to come for that patient. After the lungs came, the patient refused to accept them. Duke had no other patients at that time that the lungs could be used for and because Duke accepted them, no other hospitals had even considered them. The lungs ended up in the trash!!!!! Dr. Zaas said the worst part was they were the best lungs he had seen in over five years. That really was sad. What a waste for the unused lungs and the donor family.
Dr. Zaas had said that as far as he knew no lung transplant patient, anywhere in the US, had ever contracted a disease from the high risk lungs. He said if it were him, or his family, he wouldn't hesitate to accept them. He also reminded us that Duke really doesn't want the New York Times etc. to be down in Durham because they accepted some bad lungs and infected one of their patients! All this said and he left Lee and I to look everything over and make our decisions. This was a tough call and Lee and I made it together. The final analysis came down to this:
- I'm already going to be cutting my donor pool short because of my antibodies that don't get destroyed
- I don't have cystic fibrosis or pulmonary fibrosis so those patients will be ahead of me
- If I don't include high risk donors, I've cut my donor pool down by another 15 percent
- I am already in my "window" and I don't want to reach the end of my window and not have a new set of lungs.
We will now turn it over to God because it's getting to be a lot to handle alone.
It's now 6:15 at night and we are both sort of drained. Easy dinner and kick back with TV sounds good to me.
Oh, one other thing. I'm going to ask Amy to continue my blog when I actually go into the hospital. When I'm feeling up to it, I can then take over. OK with you Amy??
Take care and love to all.
Wendy, Lee and Missy