Pre-Transplant work up/IV's - results and where we go now

Last week I completed the pre-transplant work-up at Methodist Hospital here in Houston.  A long week of testing, poking, scans, meetings, consults ... are all complete and we now have a sense of relief that these things are over.  I thought I would share some results, a few things we learned and where we go from here.  

First appt for this workup, I think I counted 32 vials.
By far the most I've had taken at one time.

My arm after many pokes!

Thankfully, we found out that the rest of my body besides my lungs and sinuses are healthy and in good condition.  They basically test you from head to toe to make sure your body can handle the surgery alone.  I learned my heart is in good condition, I don't have any blockages in my carotid arteries (however I do have high cholesterol) and my bone density is normal (which is fabulous considering the amount of prednisone I've taken over the course of 31 years.  Prednisone can break down your bone density, causing osteoperosis/osteopenia). I also have no issues with my abdominal/pelvic organs, my upper GI tract is in good shape and my diaphragm works as it should.  Basically we encountered nothing unexpected with the tests and came out of it with a sense of confidence that despite having terrible lungs and sinuses, everything else is normal.  This is all great news and will hopefully help me when it comes time for transplant.

Waiting to go into the nuclear medicine
for the VQ scan where they inject radioactive
isotopes into me to view ventilation and
perfusion abilities of my lungs.

I learned that my blood type is A+ and I do not have any antibodies which could complicate things a little, requiring me to go through a process of plasmapheresis (a process which is like dialysis but removes antibodies in the patients blood and then returns the blood without the antibodies).  I was relieved to hear I will not have to do this.

We gained a little insight into the pre and post transplant life changes that we could expect.  Let me tell you, life post-transplant will be a whole new world ... not just because I will (hopefully) be able to breathe freely, but I will have to make many lifestyle changes that will affect my everyday life.  This of course will be worth every last change, however it will be an adjustment.  There are many things I will not be able to do or have both immediately after surgery and some for the rest of my life, because I will be extremely immunosuppresed.  I will no longer be able to eat sushi, raw vegetables or eat out at a salad bar/buffet.  Everything I eat will have to be cooked completely, including chicken, meats, veggies, etc.  We will have to take extra precautions to wash all veggies and fruit very well.  For the first 30 days, I will have to have home prepared meals (no take out, or eating out).  I will not be able to clean house any more (I know, many of you would say yay!!!), in fact I will have to be out of the room when cleaning is going on.  I will have to wear gloves when doing dishes.  I will not be able to get any tattoos or piercings or drink any alcohol and I will have to avoid large crowds ... including the mall during high-peak times, like holidays.  Yikes ... thank goodness there is online shopping ;)

For the first 30 days, I will have to have 24/7 care with two caregivers available.  I can not be left alone for even a couple of minutes during this time.  I will not be able to have any house plants and for the first 30-60 days I can not have the pups in the house.  As you might imagine, since Bob and I don't have any human children, this last piece (being without my puppies), will be extremely hard, in fact maybe the hardest adjustment of it all...but the hope is that it is temporary.

The bone scan machine

As for the life pre-transplant which is where we are now, I am basically going to be monitored every 2-3 months, unless something changes. My case was presented to the medical review board yesterday morning and I received the call yesterday from my pre-transplant coordinator that everything looks good and I am considered "Tabled".  This basically means that I am not listed as "active" and they will reevaluate as needed.  I only have one or two more tests to complete, a right heart catheterization and a breast ultrasound.  This can be done in due time.  When it comes time to be listed as "active" this means I could get "the call" for transplant at any time.  I have to be within 3 hours of the hospital at all times (which means no traveling, other than somewhere within 3 hrs from Houston).  Sometimes it happens that you will get "the call" and it could be considered a dry run ... meaning the lungs that were donated ultimately were decided to not be a good fit.  This is not uncommon, so you can imagine the anxiety that would come along with that.  Once it is determined that the lungs are a good match, they have about 4 hours to get them from the donor and surgically placed in my body.  As you can tell, there are many things that have to happen before I even get the call and a lot of things are very time sensitive. 

Last day of IV's...poolside.

Without going into too much detail (as I know this is a long post), there is another piece I have to consider prior to transplant.  My family and I have to decide if I were offered, if I would take what is considered a "high-risk" donor.  This term "high-risk" is kind of misconstrued b/c it's not all that is sounds to be.  A high-risk donor could be someone who has been determined to have had IV drug use in the past, someone that was incarcerated, homeless, or simply someone who has passed who has no family/etc to determine their past lifestyle.  When someone decides to be an organ donor, their family or designated person will fill out a very complete history for the medical team so that the the doctors evaluating the organs can get a good picture of that persons lifestyles and habits.  Basically, the medical team and the recipient and their family are relying completely on those people to give an accurate detailed history ... as you can see, there is a lot of room for error, so the term high-risk, is a bit misleading ... but something to consider.  Should I chose to accept a high risk donor, there is a chance I could get Hepatitis C or another disease that that person had or was exposed to... All just a lot to consider.

So with that, I will end this post.  I hope this gives you a glimpse into what my family and I are going through.  We definitely got some good news out of all of this.  I am still considered "early" for transplant, I have a healthy body other than these stubborn lungs and sinuses, they think I will be a great candidate for transplant and thankfully Bob and I have great insurance coverage.  These are all positives as we move onwards and upwards with our lives.  Please continue to keep all of us in your thoughts and prayers as we truck along and hope to prolong this transplant as long as possible.  The best possible lungs for me are my own despite them being so damaged, so keeping me healthy and strong as long as possible is the ultimate goal. Thanks for all who have supported me, Bob and my family during all of this.  The calls, texts, cards and well wishes are all so important to us and keep us reminded that we have such an awesome support group behind us.  Thank you!!  -REBS