Ready for the "Photo op"

On the road to taking care of this: Chronic Rejection!

Well, Well. my blood count is now off the charts. So we are finally ready to begin "photopheresis" on Monday. I can't believe I would be excited... but I am actually ready to get this show on the road. The treatment will last 15 to 18 months.

I will recieve one treatment on Monday. I will stay in Bham and get my 2nd treatment on Tuesday. Remember, I have a wonderful guardian angel "Carol" who happens to have an apartment in Bham, well she is letting me use her apt for whenever I get my treatments. I am so thankful for Carol. Thank you BJ for sharing your sister with me.

I will let you all know more after I get home on Monday.

Back from Wyoming

No medical update.... but we did just return from Jackson Hole, Wyoming, Yellowstone National Park and the Grand Tetons. We had a wonderful time and I did not think about my "lungs" until I got on the plane to come home. We went rafting down the Snake River, horseback riding, we saw Old Faithful, Grand Canyon of Yellowstone and we did some short hikes.

YES... I did wear my mask!

I have noticed that my pulmonary functions were lower in Wyoming but when I checked them when I got home, they were still not so good. Well... not to worry.... that is why I should be starting PHOTOPHERESIS on Monday.

I will have blood work "WBC" tomorrow and if everything turns out right.... I will FINALLY begin "Photo". I will let you know Friday the results.

White blood count is on the rise!!!! The health care professionals are looking for a number of 300 in something called ALC. (I have no idea... but as I understand it... this is why you take calculus in high school and college). It is derived from the WBC value and the neutrophil value.

Here is what we have been looking at:

7/2/08: 266..... (ready for photopheresis next week)

7/10/08 63.... hold on... cancel "photo".

7/14/08 132... going in right direction but not fast enough.

7/17/08 130.. basically no change but why?

7/21/08 288... HIP HIP HOORAY! we are on the rise.... I can now pack for our trip to Jackson Hole, Wyoming, Yellowstone National Park and the Tetons. Should be able to start "photo" when I get home.

Blood drawn again today for CBC to check on white blood count. Results of CMV were NEGATIVE which is a good thing. (I expected it to be negative. They just have to rule out any bad things as they are trying to get a handle on my WBC.) Labs from today should be back in the morning.

July 18, 2008: No good news on blood work. WBC and neutrophils are still in ALERT mode.
They also drew blood to check for CMV on Wednesday. We do not have the results on that back yet. Lung Transplant Team wants more blood on Monday.

I have plans with my family to leave for Wyoming on Wednesday. Because my immue system is so low... they are urging me to take extra precautions.... wear mask on plane, wash hands all of the time, no raw vegetables, careful with flossing teeth etc.

Leah is also in the County Swim League Championships on Sunday. She has qualified in 3 events and 2 relays. I have to be there for that. I will have to use precautions since my WBC is so low.
Otherwise, I am sticking as close to home as possible for now.

July 17, 2008: Blood was drawn for another CBC (complete white blood count) to see if my body is ready to start photopheresis. I had my port flushed today since photopheresis has been delayed. Dr. said port flushed fine but he could not draw blood back in the syringe. He called Bham to see if that is a problem.

Left: Dr. Office staff and me. I feel like they are vampires saying "I want your blood".

July 15, 2008: Blood work is crazier than ever. WBC is ALERT level even lower and neutrophils are also in ALERT level. Cellcept dose was put on hold.



July 14, 2008: Blood work again to see how WBC is doing after changing dose of cellcept.



July 11, 2008: Blood work is doing crazy things. WBC is ALERT level low and the neutrophils are not right either. Photopheresis was canceled for Monday. We lowered my cellcept to 500mg.



July 10, 2008: Blood work again just to make sure we are good to go for Monday the 14th.



July 7, 2008: Blood work looks fine so we are scheduling to start photopheresis on July 14 and 15th.



July 3, 2008: Blood work to determine if white blood count and neutrophils are where the doctors want them to be to start photopheresis.