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!

Pathology Report

The pathology report is back.
1. On my chest… it is basal cell carcinoma, nodular type
2. On my nose.. it is an infiltrating squamous cell carcinoma (which means it is deep in my nose) Bye Bye nose!!!
I will be talking to the doctor tomorrow to see what we need to do and schedule the surgery.

Trip to Dermatologist

Well… I had 5 pre-cancers off of my face… 2 off my back, 2 off my hand, 1 off my elbow, 1 off my chest…. Then I had to get a biopsy from my nose and chest!.... Probably looking at having to get a plastic surgeon if it turns out to be cancer on my nose….. Hey… I don’t even need a costume for Halloween!

Life should not be a journey to the grave with the intention of arriving safely, in an attractive and well preserved body; but rather, to skid in sideways - chocolate in one hand, martini in the other - body thoroughly used up, totally worn out and screaming, ‘Whoo-hoo! What a ride!’” Anonymous

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!

Leah and Jordan Rosenthal

Leah goes to homecoming. Mom was a nervous wreck!

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.

Tennis Match

I just wanted all of you to know how good I am feeling......


I played in my first ALTA match since spring. It went 3 hours. Mel and I took the set but it was tough. 1st set: Lost in tiebreaker 2nd set: won 6/3 3rd set: won 7/5. That is 34 games of tennis. I did not have the heart to tell them I was a double lung receipient and i was in chronic rejection!! The team took the match today winning 3 of the 5 sets.

This is part of my tennis team. The others are on the court.

A Personal Note

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!

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.

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!!!

Feeling Good

Just a small update. I finally gained some weight! 5 lbs.... and I feel really good.

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.

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.

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.

I have now had my new lungs for 8 years. I have recently been diagnosed as being in chronic rejection because my pulmonary functions have dropped almost 20%. I have lost 15 pounds and I sleep more than 18 hours a day. However, I did find some "awake" time to go parasailing with my daughter in between dr visits and sleeping. In one month, I will celebrate my 48th birthday