Saturday, June 5, 2010

It's the first of June...

Hi everyone!

I had posted about having pheresis done in May but we have been waiting for the insurance company to give their blessing.

The approval finally came through late yesterday (8:00 p.m. EST)  Because it was so late it looks like nothing will get started until next week.  In defense of the insurance company, the treatment regimin has never been given to a lung transplant patient so Blue Cross had nothing to compare the request to.

My problem is two-fold -- 1) high antibodies and 2) I didn't respond to the first two treatment plans.  Dr. Zaas had numerous conversations with some docs at the Cleveland Clinic about how they treated Kidney transplant patients with these same response problems.  After those conversations the Duke docs came up with this game plan that needed to be approved by Blue Cross...

Day 1: plasmapheresis (1-1.5 plasma volumes) w/ citrate dextrose and 5% albumin replacement
solumedrol 100mg
bortezomib (1.3mg/m2) over 3-5 seconds
rituximab (375mg/m2)

Day 4: plasmapheresis
solumedrol 100mg

Day 8: plasmapheresis
solumedrol 50mg

Day 11: plasmapheresis 
solumedrol 50mg

Day 14: plasmapheresis
Day 16: plasmapheresis
Day 18: plasmapheresis

I'll be in the hospital for the first set of treatments.  Then - if I tolerate it well - I can take the remaining treatments outpatient. 

Normally the treatment plan would start this Monday but I will be out of town until Tuesday or Wednesday so I guess they will start it on Thursday.  We were all hoping to get the initial dose in before I left town but it just didn't happen. 

That's the update on the medical part of our lives. Now for the rest...

Lee and I are traveling to Sanford, NC because Stephen and Vanessa flew in to see Dale and Lorie (Stephen's dad and step-mom) and they live in Sanford.  Amy and Michael are going to be there too.  Dale and Lorie rented a house for their guests to stay in and they very graciously said Lee and I were welcome to come and stay in the house too so that we can see the kids.  I'm really looking forward to that because I haven't seen Stephen and Vanessa since we moved!

Lee, Amy, Michael and I went to the Durham Bulls baseball game and it was fun for the first two innings and then the torrential rain and thunder and lightening started.  OMG it was wild!!!  We don't get that kind of weather in Sacramento.  We were absolutely soaked in a couple of minutes (with umbrellas and jackets).  Needless to say the game was cancelled.  At least we'll be able to get tickets to another game! 

The weather here in NC is so different than CA.  We are getting used to getting rain about 3-4 times a week!  It's not like CA where it rains all day...sometimes it will rain for an hour and then move on.  Lee and I need to start keeping umbrellas in the car ;-)

Missy did great during her overnight trip to the Sunny Acres Pet Resort.  She also participated in Doggy Day Camp with the other camper dogs.  Surprisingly she seemed to like the other dogs.  We bought her a Thundershirt ( and she did pretty darn good with the weather too (she was at the resort during the baseball game weather!)  For any of you who have dogs that are afraid of thunder or fireworks or other stuff like that, I really recommend these shirts!  Missy is going back to Sunny Acres while Lee and I are in Sanford.

We had a nice Memorial Day...a couple from our church invited us over for a cook out.  There were eight couples and we had a really fun time and the food was great!

Have I said lately how awesome Lee is?  Well...even if I did I want to say it again. 

That man is the most wonderful person!  His love and support are keeping me going right now!  He is always there for me and his patience is beyond belief!  I get tired, short of breath, cranky and frustrated.  Lee just supports me through all of it... If I wake up at 3:00 in the morning and need to move to the recliner because I can't breathe Lee just helps me up and totes the pillows and blankets and sets me up in the chair with a kiss goodnight and back to bed he goes.  Lee does most of the cleaning, walking Missy, laundry and other chores.  He never complains.  Whatever I need he does his best to take care of it.  I know Lee is scared about my health.  I can see it in his face.  As I get sicker he gets more scared.  I try to reassure him but I can understand how he feels...if the rolls were reversed I'd be terrified!  Even through his fears he is supportive of me and hugs me and tells me it will be ok.  I couldn't have a better caregiver - I don't think they make a better one!!

Well I'm done writing for now but I will write when I've started treatments to let you know how they are...

Love to all,
Lee, Wendy and Missy

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