I'm sorry I haven't written in such a long time. I'm sure it's because I'm too cold. Lee says I have a new way of saying how cold it is. North Carolina is "stinkin cold"!!!! We are wearing gloves and both of us have now invested in thermals :-)
I've been listed but I haven't had a call to come in.
Since the last time I blogged in the middle of November, I've been to doctor appointments and had more Pulmonary Function Tests and Arterial Blood Gas Tests and X-Rays and CT Scans. The results are just what they expected...my PFTs are worse than last month and my ABGs show a tiny bit more carbon dioxide in my blood than last time. The X-Rays show a slight deterioration in the upper lobes of my lungs and the CT Scan shows no change in the "nodule" in my upper right lobe.
The Team updated my LAS (lung allocation score). They will do this each month. As my test results get a bit worse then my LAS gets a bit higher.
When I saw Dr. Zaas last week he was really insistent that I get an H1N1 shot so ... one more needle! I think I've mentioned before that each time I see Dr. Zaas it's refered to as "clinic".. Each time I go to clinic I have blood tests (lots of vials), a PFT, an X-Ray and an appointment with Dr. Zaas.
The people in the blood lab need to go back to school. The lady there had to stab me - that's really what it felt like :-( - three times and she drew some blood out of two of the stabbings but she ran out before the vials were filled. So, she started sharing the blood between the vials. My brother and sister-in-law both know more about blood tests than me but I'd think the goop at the end of the vials must mean something so I hope I don't get wierd results because she poured stuff from one vial to another. Hopefully by next visit (December 30th) they will get a little more proficient at finding my viens!
Dr. Zaas talked with Lee and me about the waiting and wanted to make sure we weren't getting anxious. Neither of us are because we understand that right now there are people who are way sicker than me on the list and hopefully they'll get transplanted before me. Dr. Zaas said that the team decided to bring me out as soon as possible instead of waiting until I was critical because he didn't think I'd be able to make a cross country move at that point. The team wants me in rehab getting strong and buff...oh yeah, I could be in a Kung Fu movie! OK maybe not but I do feel a little stronger.
I've finished my chemo (rituximab) and IVIG (IV Immunoglobulins) treatments. They hopefully will kill off the anti-bodies that would reject donor lungs. Dr. Zaas says it takes a long time for these treatments to kick in. The blood test I had taken this week to check those levels will most like only show the results of the first set of treatments (first set in October and second set in December). Well, I hope I'm more receptive to foreign things in my blood than I was. Because of my anti-body levels and my current degree of sickness Dr. Zaas said it could be another four - six months before transplant....OH PLEASE let's pray it's sooner than that.
Amy Paige came to Durham last Wednesday to go to Transplant School. They were teaching feeding tubes again. After attending the class (Lee went with us too) Amy said it wasn't as bad as it could be and she's now traded responsibilities with Lee (again). She'll handle the feeding tubes and he can take on the insulin shots. It's so nice to see how anxious they both are to sign up for these jobs!!!
Amy did say that I looked like the healthiest one in the room (patients only). She is used to seeing me do as much as I possibly can all the time. Some of the patients aren't as active...if at all. She was sort of shocked to see how sick some of these people are. I'm probably as sick as some of them but I'm driven to stay active and that makes a huge difference. One doc I saw said it's really sad but a lot of the patients come to the Durham area for a lung transplant at Duke and simply sit on the couch waiting for the phone to ring telling them to come in - even if it's months.
I'd go crazy! I'd make Lee crazy! I'd make everyone around me crazy! I have to keep active. It is getting harder at times but Dr. Zaas said to "push through it" so that's what I try to do. In the last month Lee and I went up to Amy's for Thanksgiving. That was fun because Michael's family was there. They are really nice people. Then the Saturday after Thanksgiving Amy and I went to a huge Holiday Faire in Greensboro, NC. People come from all over the east coast to this thing. It was really cool. Then Saturday afternoon Lee and I went Christmas shopping. I was beyond exhausted after that day but I think anyone would have been :-)
I've been sewing and doing a little embroidery for Christmas. I LOVE my embroidery machine. Amy and I embroidered 144 caps for a new restaurant that is opening. Heads up to us that they will have six others opening in the new months. I embroidred burps and bibs for the baby store. They were really cute!
This last weekend I drove up to Amy and Michael's new house to make cut-out cookies with Amy. She and I baked and baked and baked. My Friday night stay turned into a week-end stay just so we could finish the cookies. They are done and here's some pics:
Now here are a couple of other pics for you:
It looks like I'm really digressing here so that's it for now.
Love to all of you,
Lee, Wendy and Missy