Does Photopheresis Work?

I just got back from getting pulmonary function tests... The biggest question I get is "Does Photopheresis work?" I am not a scientist but with an all time HIGH of pulmonary function test showing 97%....... I would say YES!!! Praise the Lord. Two more treatments and I am finished! It was well worth it.

Photopheresis Update

My next photopheresis treatment is set for July 6th. After that, I only have one in August and one in September and then I am DONE! If you know of anyone that has been diagnosed with chronic rejection and they are wondering if it is worth it or not..... i say DEFINITELY....ABSOLUTLEY.....

Feel free to email me if you wish to ask me any questions. Also, give me your phone number and I will also try to call you so we can talk.

MORE SKIN CANCER

Darn these anti rejection drugs.... I have 4 more skin cancers that I have to get removed... They won't do them all at once. I have to get them all done separately. Did I ever mention that I would rather be out on this nice spring day instead of going to the doctor! But hey! I am so thankful to be alive.

The transplant team changed my anti-rejection drug to rapamune. They hope it will help with all the skin cancers. Cellcept might have been part of the problem... However, I am blonde, blue eyes and fair skinned too!

Photopheresis is going great......

Photopheresis

Treatments are going great.... Life could not be better! The medical team at UAB are awesome!

Photopheresis: Tuesday

I go back to get the tube out of my nose and as it turns out I do have acid reflux. OH WELL...

Photopheresis works like a charm today! I am so happy and so is all of the photopheresis team!!!!! Life is good when things go well.

My friend, Paul, that had his transplant about 5 years ago is now in chronic rejection and he is going to start photo as well. He is getting his port placed today.

Photophereis

Monday at UAB did not go well at all. I had a esophagus test at 7:30 where they put a tube through my nose into my stomach. Just getting the tube down was an adventure with the coughing and tears and swallowing. But we got the test accomplished. Then they inserted another tube down my nose to my stomach to wear for 24 hours. The purpose is to find out if I have acid reflux. They are finding that acid reflux is causing damage to the lungs.

Then I had to go to the Lung ICU for Photopheresis. The procedure did not go well at all. My blood kept clotting. They stuck my port with a 22 gauge needle and it clotted. They brought another doctor... he stuck my port with another 22 gauge needle and it clotted.... then another doctor and she stuck my port again... BY NOW THIS IS TOO MUCH... still clotting. They put in a medicine to break up clots... left it for 30 minutes and stuck my port again with a 22 gauge needle... still clotting... they plunged the needle, they flushed saline, they pulled out blood... they pulled out clots... they kept doing this for about an hour.... finally they aborted mission and I did not get photopheresis today. They put in medicine to break up clots and I try again tomorrow.

Medical Update

It has been a while since I gave an update on my photopheresis treatments. I had two treatments in December (one trip) and I also went to lung transplant clinic. The transplant docs were pleased at how my photopheresis treatments are going and my lung function was up!! 87% FEV1... WBC (white blood count) is good and Kidney function good.
But... there is always a but... isn't there... BUT.... they want to do a couple of new things as well to save my new lungs.

1. Start taking Azithromycin every Monday, Wednesday and Friday
2. Get some Esophagus Studies to see if I have acid reflux. (Acid reflux will destroy your lungs) to be done in February.

I had 2 photopheresis treatments (one trip) in January. The first day went great. The second day I had a few problems with blood clots but my A number 1 photopheresis team took care of that and the treatment went fine.

Skin Cancer and Thanksgiving

The skin cancer was removed from my nose yesterday. It was done by a MOHS surgeon. This type of surgeon is trained to perserve as much tissue as possible. My nose has stitches in the shape of an L. It does not look too pretty right now but I am hoping the scar will be minimal.

I was in Birmingham on Monday and Tuesday for my photopheresis treatment. Everything went well. My schedule has now been changed from every 3 weeks to every 4 weeks for photopheresis now. My next treatment will be December 15 and 16.

We will be traveling to visit my Mom in Mississippi for Thanksgiving. My grandmother is 96 years old so we will be visiting with her in the nursing home. My brother and his family will be joining us from Alabama. He has a brand new grandchild that we are anxious to meet.

Medically, this has been a trying year for me but I am so thankful to Dr. Larry McKean, my lung transplant team at UAB and my photopheresis team at UAB. They are on top of things and I know that i am getting the best medical treatment possible. These treatments are so amazing.. I often wonder who is smart enough to figure this all out. Who ever it is... thank you!

Photopheresis Treatment #8 and #9

21 Treatments to go! But who is counting....

This week my photopheresis tech was Lance and Sarah.
Dr. Huang calls Lance #1. I think it makes him think he is the best photopheresis specialist of them all..... Lance loves fishing and hunting. He carries in his pocket pictures of his fish that he has caught like you would carry a picture of your child. What a nice man! His little dog had to go to the emergency room the night before and he was very concerned about him.

But besides getting to know Lance... my treatment went very well. He brought a little bad luck with a few blood clots but he was able to quickly resolve the issue.

On Monday, I had Sarah as my photopheresis tech. The treatment went perfect! My neighbor also getting photopheresis caused her some grief but at least my body was behaving itself today. Sarah loves dogs. She shows dogs in agility. I enjoy her stories of her dogs and how they are doing in the agility ring. (Sarah did not let me take her picture)

This is Dr. Emily Gorman. She is the "resident of the month". Each month we get a new resident learning about photopheresis and also we are the "laboratory mice" where they learn how to access a port. Kidding aside... so far they have all done an excellent job... besides the photopheresis techs know more than they do and they are quick to resolve any mistakes the doctors might do!

Photopheresis Treatment 4 and 5

My treatments on Monday and Tuesday went very well. I was having a race with Mrs. Carty to see whose blood could cycle the fastest. (Of course, neither one of us have any control over that). She started 30 minutes after me and finished 30 before me on Monday. The treatment takes about 3 to 4 hours. She only has one more treatment to go as she has been doing this for about 15 months now. I still have a long way to go. She told me that she is really going to miss coming to UAB for all of the treatments. There are really a lot of nice people here and I can see how she would miss it.

My friend Clay, was still up here in the ICU. Please pray for him as he is struggling with a blockage and they may have to operate. If they have to operate, then he has to go back on the ventilator. At this stage of the game, that is a risky move. Please pray for the wisdom of these wonderful doctors at UAB.

While I was in Birmingham, I went to visit an old friend from Elementary and High School Days. She came to hang out with Keith and Mom during my transplant 8 years ago but I have not had the opportunity to see her.

I hope now that I have to go so often that I will be able to hook up with her and have dinner a couple of times.

My next photopheresis treatment is October 9 and 10th.

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.

I knew I had to be careful with ultraviolet light so I asked if I could go to a movie. Mike suggested I go buy some clear glasses that are 99.9% UV. I went to see the movie " The Bunny House". Even though it is rated PG 13... I don't recommend letting your teenager watch it.



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.

Next treatment: September 15 and 16Th.

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!

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.!!!

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.

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.