OK... well you know yesterday Keith and I were married for 20 years. Well, he surprised me with 2 dozen roses delivered in the afternoon. ... a romantic dinner.... and a past, present and future diamond ring. Knock me over with a feather! Oh my gosh.... what a wonderful man I have. And just two days ago when I was having my treatments, I was feeling so unloved.
WOW... I am still in shock. He has been through so much with me and this crazy disease and he still loves me after all these years! Keith if you are reading this.... I LOVE YOU TOO!
Thursday, August 28, 2008
Wednesday, August 27, 2008
Photopheresis Treatment 2 and 3
Sunday, August 24, 2008: I left for Birmingham for my 2ND photopheresis treatment that will be in the morning at 9:00am. Before I could get out of Atlanta, I found out all lanes on I-20 West bound (i.e.) to Birmingham are blocked. STRESSFUL... how do you get to Birmingham if all lanes are blocked???? Well.. I ended up going through back roads and finally ended up on I-20 close to the AL line. Thank goodness for TEL-NAV.
Monday, August 25, 2008: I arrived in the ICU for my treatment to find all of the patients out in the hall. I asked why they were out in the hall to find out there were very severe tornado warnings. Well... that was good to know since I had just driven from my apartment to the
hospital. I guess I could have gotten blown away by the tornado.
This is Shu T. Huang, M.D. Pathologist. Everyone tells me he is the smartest man IN THE WORLD. and he is the mastermind behind photopheresis. He is also the one that saved my port 3 weeks ago.
This is Dr. Bai. He is
a resident. He is the lucky man who puts the "drill bit" size needle in my chest for photophersis. I have to say.. he is pretty good.
On to the photopheresis treatment.... all went well. My port worked like a charm. My "photo" tech today was Mike. Since he has to sit and watch me for 4 hours we had a nice chat about cycling and tennis. I found out he likes to dance at Oktoberfest and wear the outfit too!
This is the photopheresis machine. See the bag in the front of the machine that is red. Well, that has my Red blood cells in it without the white blood cells. Isn't that cool. Did you know red blood cells are really red!
This bag has my white blood cells in it. It has a tint of red only because a few red blood cells got in the bag. After all the white blood cells are collected which takes about 4 hours, Mike puts UVADEX (a drug)( methozypsoralen) in the bag with the white blood cells. Then the white blood cells are hit with UV radiation during "photo activation".
When this step is complete, your radiated cells are transfused back into your body and you are ready to go.
Here Mike is flushing my port and getting to remove the drill bit and then we start all over tomorrow.
When I arrived at the apartment Carol was there with two of her friends. We had such a wonderful time just talking and chatting. Of course, they called me "Hollywood" because I had to wear my sunglasses at all times.
Tuesday, August 26, 2008:
Back to the hospital at 9:00am. My photo tech today was Andrea. No problems. Everything went absolutely smooth. Andrea had a nice 4 hours chat about teenagers! We also decided to change my name to SUZI. So... what do you think. I think I sound younger!!!
A friend of mine, Clay, is up here on the unit. I can't see him because they had to put him back on the ventilator. However, his Mom and Dad come down to visit with me while I am getting my 4 hour treatment. Clay was transplanted on May 25, 2008. Almost 8 years to the day since I was transplanted. He caught a really bad "bug" and had to be put back on the ventilator. If you will remember, the same thing happened to me as well. They ended up having to "trach" Clay because it is taking too long to get him off of the ventilator. I am confident he is just having a bump in the road to his successful recovery but please lift him up in your prayers. Clay is only 25 years old and has a whole lifetime ahead of him.
Yes, I did drive to Bham by myself. The toughest part was the drive home. I was a little tired from the treatment but thunderstorms and traffic did not help much at all. But all in all, it was a good treatment. I have gained all of my weight back and my color is good. While I have not had an official pulmonary function test, I can tell I am improving on a daily basis.
Wednesday, August 27, 2008:
Next treatment: September 15 and 16Th.
Monday, August 25, 2008: I arrived in the ICU for my treatment to find all of the patients out in the hall. I asked why they were out in the hall to find out there were very severe tornado warnings. Well... that was good to know since I had just driven from my apartment to the
hospital. I guess I could have gotten blown away by the tornado.This is Shu T. Huang, M.D. Pathologist. Everyone tells me he is the smartest man IN THE WORLD. and he is the mastermind behind photopheresis. He is also the one that saved my port 3 weeks ago.
This is Dr. Bai. He is
a resident. He is the lucky man who puts the "drill bit" size needle in my chest for photophersis. I have to say.. he is pretty good.
On to the photopheresis treatment.... all went well. My port worked like a charm. My "photo" tech today was Mike. Since he has to sit and watch me for 4 hours we had a nice chat about cycling and tennis. I found out he likes to dance at Oktoberfest and wear the outfit too!
This is the photopheresis machine. See the bag in the front of the machine that is red. Well, that has my Red blood cells in it without the white blood cells. Isn't that cool. Did you know red blood cells are really red!
This bag has my white blood cells in it. It has a tint of red only because a few red blood cells got in the bag. After all the white blood cells are collected which takes about 4 hours, Mike puts UVADEX (a drug)( methozypsoralen) in the bag with the white blood cells. Then the white blood cells are hit with UV radiation during "photo activation".
When this step is complete, your radiated cells are transfused back into your body and you are ready to go.
Here Mike is flushing my port and getting to remove the drill bit and then we start all over tomorrow.
When I arrived at the apartment Carol was there with two of her friends. We had such a wonderful time just talking and chatting. Of course, they called me "Hollywood" because I had to wear my sunglasses at all times.
Tuesday, August 26, 2008:
Back to the hospital at 9:00am. My photo tech today was Andrea. No problems. Everything went absolutely smooth. Andrea had a nice 4 hours chat about teenagers! We also decided to change my name to SUZI. So... what do you think. I think I sound younger!!!
A friend of mine, Clay, is up here on the unit. I can't see him because they had to put him back on the ventilator. However, his Mom and Dad come down to visit with me while I am getting my 4 hour treatment. Clay was transplanted on May 25, 2008. Almost 8 years to the day since I was transplanted. He caught a really bad "bug" and had to be put back on the ventilator. If you will remember, the same thing happened to me as well. They ended up having to "trach" Clay because it is taking too long to get him off of the ventilator. I am confident he is just having a bump in the road to his successful recovery but please lift him up in your prayers. Clay is only 25 years old and has a whole lifetime ahead of him.
Yes, I did drive to Bham by myself. The toughest part was the drive home. I was a little tired from the treatment but thunderstorms and traffic did not help much at all. But all in all, it was a good treatment. I have gained all of my weight back and my color is good. While I have not had an official pulmonary function test, I can tell I am improving on a daily basis.
Wednesday, August 27, 2008:
Keith and I celebrate our 20Th Wedding Anniversary.
Sunday, August 17, 2008
What keeps me going?
Many of you ask... what keeps me going with courage and a great attitude. Here is a picture of my daughter. As you can see, my family is very active. She is just one of the reasons....
Is it Michael Phelps..... no... it is my 13 year old daughter, Leah!!!
Thursday, August 14, 2008
Wednesday, August 6, 2008
Will Photopheresis help my current pulmonary functions
David asked.... will this help increase my pulmonary functions. The photo team tells me that most people have experienced increase in their PFT's. But at the very least... it will stop the downward progression. Luckily, my PFT's were in the high to low 90's. I am now in the 70's.
Now you must remember that for years I lived with my PFT's in the mid 20's. So even if I stablize in the mid 70's... I am still way ahead of the game. I will never ever regret getting the transplant.
I plan to start back playing tennis next week. I am on a Thursday Fall Women's Team. I have not played since the spring. I am very excited to get my tennis game back going again.
Tuesday, August 5, 2008
SUCCESS!!!!!!!
Well.... they brought a Dr. Huang in first thing this morning before anyone touched my port. He waved his magic wand... put the needle (the size of a drill bit) in my port. Voila..... blood flow perfect and no OCCLUSIONS. We made it through all 6 cycles!
Although the mechanisms are still being studied, it seems that when light-treated cells are re-infused into the patient, the number of overactive immune cells are reduced and the immune system is stimulated in a way that brings it back into balance.
For now... I have to stay out of the sun light for 24 hours and wear sunglasses even inside. I have to keep as many lights out as possible. I can watch TV with my sunglasses on.
I arrived back home safely and do not feel any side effects at all.
OH HAPPY DAY!!
Although the mechanisms are still being studied, it seems that when light-treated cells are re-infused into the patient, the number of overactive immune cells are reduced and the immune system is stimulated in a way that brings it back into balance.
My next 2 day treatment is August 25 and 26.
For now... I have to stay out of the sun light for 24 hours and wear sunglasses even inside. I have to keep as many lights out as possible. I can watch TV with my sunglasses on.
I arrived back home safely and do not feel any side effects at all.
Photopheresis....still not there yet.....
Monday: August 4: Well we had to abort mission with photopheresis today. First, they accessed my port with a needle the size of a drill bit! At least they numbed it with lidocane. Then they hooked me up to the photopheresis machine.
The blood is removed in 6 cycles. After the 6th cycle the white blood cells that are collected and treated with medication and exposed to UVA light which activates the drug. The treated cells are then re-infused into the body so thaye can generate an immune response.
Well for me.... at the beginning of the 5th cycle my port would just not give any more blood. They called in two different doctors to try to get it to work. No success. They started calling me TURNIP. Why... after the expression you can't get blood out of a turnip.
They had only 2 things left to try. Put in a medication in my port to sit overnight and if that did not work... it is back to surgery to reposition the port. OH MY!
I went back to the apartment more than frustrated. I am in Birmingham by myself. What would tomorrow bring? Well they may be calling me turnip..... but they are not going to break my spirit.... tomorrow is a new day and it will work.!!!
Friday, August 1, 2008
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.
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