Finally Pheresis!

Today is Tuesday June 15th and I have had my first treatment of pheresis.  The bortezimib is done and the rituximab is almost done...it's been a very long day!!!

I was admitted to the hospital yesterday for this treatment and I thought it would be started yesterday but I guess they wanted to start fresh this morning.  I can understand that since they showed up at 8:30 this morning and I'm still being treated (it's 7:40 p.m.)

So...pheresis is more...and less...than I was expecting.  Phil, The Pheresis Man, arrived at my door with lots of equipment.  He brought blood pressure monitors, and stands for IVs and a huge machine that looked sort of like an sci fi contraption on wheels.  It had a bunch of empty bags hanging down from it.  This is a picture of the machine and Phil during treatment.

This is a "lovely" picture of me with my tubes!  The tube on the far right is my oxygen tube (4L and holding at rest).  The other tubes come from the catheter shown to the left.  It is a good sized tube that they inserted last Wednesday (using really good drugs thank you very much!).  The tube is inserted under the skin on my chest and up until it goes down into my neck...yes, that's as gross as it sounds ;-)

The single tube splits and has an "in" tube and an "out" tube.  This catheter was put in solely for phereses and even though I have this huge thing in my chest, the nurses at the hospital still had to put in another IV for their use - no one messes with pheresis tubing except pheresis people! The wrap around my arm is to monitor my blood pressure.

So my take on Phil's explanation of pheresis is...The big machine sucks in my blood via the "out" tubes.  The blood goes down into a centrifuge and spins it.  The blood is separated by weight...red blood cells against the wall of the centrifuge because they are the heaviest.  Then white cells, then platelets, then plasma.  The plasma is then pulled away and "bagged up" for disposal (it has my nasty antibodies in it!).  Then this yellow stuff called albumin (processed plasma) is mixed back with my blood to replace the plasma that was removed.  The blood is then sucked back into the "in" tube.  It's wrapped around heating coils to warm up and then it enters my body at the catheter site. 

This is a picture of Phil showing Lee the centrifuge in action (there is a glass window to look down into it).  They both thought it was very cool!

A mathmetical calculation determines how much plasma I have in my blood.  It's based on my height, weight, and blood volume.  I had a little over 2,400 ml of plasma.  Phil continued the process until they had bagged all my "bad" plasma and replaced in with "good" stuff.  We Hope!!! 

Here is a picture of me at the end of the process holding my bad plasma!  Lee asked Phil what they did with the plasma they took out of me.  Phil said it depends.  On Wednesday it's for Chicken Noodle Soup and on Thursdays it's for Birds Nest Soup.  Sounds good to me :-)  Actually they just toss it.  I thought they should keep it and try and figure out why my antibodies are different and won't go away!

Anyway, after pheresis (which ended around 11:30)  I was given solumedrol - the "super prednisone" that gave me diabetes, tylenol and IV benadryl.  Then the chemo nurse came up to administer the bortezimib.  It was one quick shot of drugs into my IV port.  Then...the rituximab regimen started at 2:00 p.m.  It's now 8:45 p.m. and I'm still getting rituximab.  This is a really long day!  All in all, I did really well with the treatments.  I felt a little light headed at times but nothing significant and my blood pressure went sort of low but when I explained that I always have low pressure Phil felt a lot better. 

On Friday I have my next round but, thankfully, there won't be any rituximab.  It should only take around 3-4 hours instead of 13!  That treatment will be outpatient at Duke South Oncology lab. 

Lee and I drove down to Sanford to see Stephen and Vanessa at Dale and Lorie's.  It was really fun.  We enjoyed seeing them and Dale and Lorie were so nice and great hosts!  We visited with Stephen, Vanessa and Amy on the first day and Stephen and Vanessa and Lee and I drove to Pinehurst on day two.  That is a really nice place!  Here are a few pics from our visit...

Lee and Vanessa!  They are so cute together!

And of course here's a picture of Lee taking Missy to Sunny Acres Pet Resort.  She looks really happy in this pic.  Apparently when she got there it was a different story!  Lee said she sunk to the ground and they had to pull her through the doorway.  I say she did that to make Lee feel bad - not because it's a bad place!

We wish everyone a great rest of June and a safe 4th of July if I don't blog.

Love,

Lee, Wendy and Missy

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
bortezomib


Day 8: plasmapheresis
solumedrol 50mg
bortezomib


Day 11: plasmapheresis 
solumedrol 50mg
bortezomib


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 (http://www.thundershirt.com/) 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