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.

What does the photopheresis machine look like? Never wonder again. Here is the machine.

Lung Transplant team called. They are pleased with today's labs. They told me the photopheresis lab would be calling me to set up "photo". I had not been off the phone for more than a minute when the "photo lab" called. Photopheresis is set for August 4th and 5th. Of course they reminded me when I am on a plane tomorrow: wear mask, wash hands, no raw fruits or vegetables, no salads and put transplant team on speed dial. to the right... medical students learning about photopheresis.

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.

This is an explanation of what they are testing for. However, I have been tested for this during the spring and it was negative.

Cytomegalovirus (CMV) is a common and widespread virus. Most infections happen during childhood, and the majority of adults carry the virus by the time they're 40. But most people infected with CMV don't even know it. So why worry? In most cases there's no need to. Infected people carry the virus for life, and usually it remains dormant — rarely causing symptoms throughout their lifetime.

But for some people, generally those with compromised immune systems, there's a greater risk of becoming very ill or of developing permanent disabilities from CMV.

There's no cure for CMV, but some antiviral drugs can help people with compromised immune systems and newborns, though side effects may occur. Researchers are studying new medications and vaccines to treat and prevent CMV.

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.

Thymogloblin

June 16-19, 2008:

Day 4, 5, 6 and 7 all thymo treatments went well and they were pleased I made it through all 7 treatments. (to the left is my thymo tech)

June 15, 2008:

Day 3:Thymo treatments going so well they discharged me from the hospital and I continued my thymogloblin treatments outpatient.

June 14, 2008:

Day 2:Thymogloblin treatments going well. No side effects.

(Left: me getting thymo in the hospital)

June 13, 2008: I started the thymogloblin treatments. They told me the side effects would be brutal. They said I would feel like I had the worse flu in the whole wide world. On this day... no side effects. YEA

June 12, 2008:
We waited all day in OP surgery for my port placement. Dr. McGiffin had a open heart surgery that took longer than he thought. But I finally got it in. However, they had a hard time finding the right vein in my chest where the port would be placed. Dr. M decided to hook the port to a vein in my neck. Now there is a plastic catheter "on the inside" that runs over my collar bone and connects to the port in my chest. Needless to say it is uncomfortable.

I was then admitted to the Lung transplant ICU to start my thymogloblin treatments.

June 11, 2008:
Go to UAB for lung transplant clinic for check up before they begin the port placement and thymogloblin. Everything went well.