New Normals

"We're high then we're low, first it's yes then it's no, and we're changing like the tides

Yeah, but I want you, I need you, and I guarantee you we'll make it out alive"

Battleships.

Friday was a great day, I finished a 3 week course of IV therapy...3 long weeks of being poked, prodded and infused.  It's been a bit of a rough month or so.  I've required oral antibiotics and LOTS of prednisone to just "get by".  When I didn't respond to a week of 60mg's of prednisone orally and my doctor heard how terrible my lungs sounded, the decision was made to start IV antibiotics.  In addition to the IV antibiotics, I was given 3 days worth of IV Solumedrol (prednisone).  At that point my lungs were screaming, hurting and it wore me out, broke me down to the point I couldn't go another day feeling like I felt.  Just showering completely wiped me out.  I was ready to start feeling like "myself" again.  

A little bruised after multiple
attempts at an IV.  One
day it took 7 tries.

This new "self" however, has changed over time.  In years past, I would bounce back after a course of IV's really quickly and feel fantastic for a longer period of time.  The change would be so dramatic from feeling really bad to feeling like a completely new person.  This isn't to say that the change isn't quite as drastic now b/c I definitely feel better, but my baseline "self" is much different, a new normal.  I just don't feel as good on my good days as I used to.  I have to remind myself that the rebound will take more time and I will still have "bad days" despite just getting done with treatment, it's just the nature of the beast.   Adapting to these "new norms" has proven to be a little challenging on my end both physically and emotionally.  I get impatient and often the things I want to do are the hardest.  Take the gym for instance ... since I haven't been able to work out like "normal" in the past (few months) really, I've lost some weight, and definitely lost strength and muscle mass.  Getting back to the gym has proven to be very tough, and I have to keep reminding myself to take it slow.  I want to get on that elliptical or rower and pound out 30 mins, but reality is 10 mins in, I am exhausted ... so I push a little and compromise, and do 20 mins instead of 30mins.  Where I used to lift 20lb weights, 10 lb weights have replaced them ... and I am so sore!!  And, all of this is usually done wearing oxygen at the gym....yes, in a room filled with gym rats and testosterone overloaded meat-heads, I walk in with my oxygen tank, oh so fancy.  All of this is to say, that these are the little "new norms" I must get used to but also challenge myself to become okay with yet strive to keep getting stronger at.  I know I won't be running 7 miles like I did in college, but I do know that I can build back some muscle strength and my endurance to a point where I feel (and look) stronger, healthier. 

This was a last minute "make-shift" IV pole I had to do to "flush" my kidneys.  I had some elevated labs that caused some concern, so I had to stop IV antibiotics on what would have been my last day and take in 2 Liters of fluids.  All is good now!

As I look forward, the scariest part is this knowledge that things will get increasingly tougher.  What I think is tough to do today, will be even harder down the road ... and that is incredibly frightening.  To see and feel the physical, mental and emotional changes that come with a chronic debilitating illness like PCD, is tough to say the least.  Navigating through the emotions of being "the sick child, the sick wife, the sick nurse, the sick neighbor, the sick friend" ... proves to be something I still haven't fully grasped or come to proper terms with.  Obviously, I know I am more to people than that ... but I am not the best at accepting help or acknowledging that I need help at times.  I've always tried to remain as independent as I can, but this independence has slowly morphed into something I am still not always comfortable with ... me needing someone there to do things for me.  I am so incredibly lucky to have people around me that know me, and instead of me having to ask, they will just do.  I couldn't have made it as "gracefully" as I did the past few weeks without the help of my Mom and my husband.  From cooking and cleaning to walking the dogs, to just being there for me on an emotional basis, these two are incredible rocks in my life.

As are all of you who called, texted, emailed and facebook me...it really means so much to know true friends are out there, and I must say you really learn who those true friends are in times like these.  In a way, having these "issues" has enabled a filter in my life I never once had ... for those people and things that matter, those that care ... and then those who just "fall away".  We've been lucky enough to have some pretty awesome people step up ... and I've also been "let down" by some who I thought were friends, but when the going gets tough they aren't anywhere to be found.  This is all part of life however, and I am focused on what matters most ... my family, my health, our friends and this life I have to live. 

After this rough month, I decided I needed a change and I
chopped 6 inches off my hair!!
I LOVE it and it feels so refreshing.  All part of this "new normal" :) 

So now, the fun part beings as I head back to work tomorrow for the first time in 3 weeks (yikes)... and even better yet, we prepare for a trip to Hawaii in a few weeks!!  Getting back to the routine, all while doing with with these "new-normals" in place.  So what if I have to be that young girl with oxygen at the gym, or on the plane, or I have a puffy face from all the roids ... I am not going to let it stop me from being who I am, or getting in the way of what I want to do while I still can.  I've learned  that often times the biggest hurdle is my own self, mentally accepting these changes I never asked for, but I know I need to deal with ... and slowly but surely I am accepting this new Rebs.  And speaking of changes .... I was ready for a change in the hair, check it out!! 

Pose 2 ... another look at the new hair!

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

One Step At A Time

"ONE STEP AT A TIME"

You wanna show the world, but no one knows your name yet
Wonder when and where and how you're gonna make it
You know you can if you get the chance
In your face as the door keeps slamming
Now you're feeling more and more frustrated
And you're getting all kind of impatient waiting

We live and we learn to take
One step at a time
There's no need to rush
It's like learning to fly
Or falling in love
It's gonna happen when it's
Supposed to happen and we
Find the reasons why
One step at a time

I felt like these lyrics are representative of how I've been feeling lately.  On Tuesday of this week, I started a round of IV antibiotics.  I was put on a different antibiotic, as last time I did this I didn't feel as clear as I usually do after two weeks of therapy.  This has proved to be a very challenging few days since starting.  I normally get a little tired the first few days of these IV's.  The thought behind this fatigue is that the medication is killing the bacteria, which in turn release toxins in the body making you feel tired, worn down, etc. Well ... I either had an enormous amount of toxins released over the last few days, or my body just reacts completely different to this new antibiotic.  For the first couple of days, it was hard for me to get out of bed, let alone shower, walk the dogs, make food ... it was really, really tough.  In fact, I can't even remember a time where I have felt so utterly exhausted and weak.  Thankfully, that has since let up and I am feeling much better/stronger.  I've got about 10 more days of this stuff, and I am hoping things continue on the upswing and I will feel the relief that I am hoping for.

Next week will prove to be a challenging/interesting week for myself and my family.  I am going through the lung transplant evaluation/work up at Methodist here in Houston.  This will consist of about 4-5 days of testings and consults...and I even get to do a 24 hr urine collection!! Yup, can you tell I am excited ;)  All in all, this will be good to have in our rear view mirror, as it's better to get the testing done when I am healthy enough to go through it, and not sick in the hospital.  The "plan", if there is one, is that I will complete all the testing now so as I do not get in a situation where I need to be listed, but have to go through days of testing.  This way everything will be done, and when the time comes...it's much easier to be listed as "active".  Our first day will consist of the following:

• 2D Echocardiogram 
• CT of abdomen, pelvis and sinuses
• Barium Swallow
• Chest Xray
• Fluoroscope of Diaphragm
• Panorex
• Bone Mineral Density Test
• VQ Lung Scan
• Carotid Doppler
• Labs

The second day is the wonderful "collection of urine" day!! (But, I don't have to go to the hospital this day, which will be nice!).  The third day is mainly a consultation day with social workers and financial advisers. The fourth day is consultations with the pre-transplant coordinators, the pulmonologists and the surgeons.  Finally the fifth day is a possible heart catheterization, if they feel it to be necessary. After all the testing is done, the doctors will present my case to the "board" and it is at that time that they will make a case for me being a candidate for transplant.  I will later learn whether or not they feel I am a good candidate to be listed.

So, as you can tell, next week will be a busy week and one that comes with many emotions.  I never thought it would get to the point where I would be having the "transplant talk", or need oxygen ... or have to go through the transplant work up.  This however is just another step in life that we have to take, and maybe .... one day, I will know what it's like to take a wheeze-free, pain-free, looong, deep breath.  Maybe one day, I can start working on that bucket list of items I want to do now, but physically can't.  This all comes with it's own emotional struggle though, as I know my second chance at breathing normal, is at the cost of a precious life. I also know that transplant is not a fix-all solution. 

I will say, that I will be a happy girl after these two weeks are over!!  The past month has been tough for Bob and I.  I was in the ER for a fractured rib, Bob was in the ER with a separated shoulder, Bob fought a virus, which then was passed to me.  I started IV antibiotics and next week's transplant evaluation...needless to say, after next week and the IV's are over, I am highly anticipating some sort of celebratory event.  I'd say we deserve a little fun after all of this :)

Please send positive thoughts and energy to us as we take next week head on.  My Mom will be with Bob and I as we experience, yet another chapter in this journey. At the end of next week, we will be joined by my Dad, my brother, sister-law and our sweet nephew Dawson. And...we can't forget we'll have my parents little pup Pablo here in Houston all week!  Can't wait to have everyone in our neck of the woods for a few days.  Now...let's get this week over with!

Rebs

"Where you wanna go
I'd love to take you there
Wish that I could make the road easy
I wish that life was fair
Don't wanna see you cry
Even when it rains
And I hope you don't forget this
You were born for better things

But if you ever fall down straight to the bottom
And you can't get back where you started
With no strength to stand
I'm gonna reach for your hand
When the going gets rough right when it's hurting
I will be there to help bear the burden
Any place any time
You gotta know for you I'll fight
(Ooh ooh, ooh ooh)
Any place any time
You gotta know for you I'll fight" - Daughtry

The past 8 months have been filled with many ups, some downs and everything in between.  I can't believe I haven't written a blog in so long.  Maybe it's because I feel a little defeated, some disappointment but also optimistic about where we go from here.  Since my last blog post nearly 8 months ago, I've met with two lung transplant teams here in Houston.  I have been followed closely for the past 8 months by a team at St. Luke's and recently met with the team at Methodist.   My lung function has dropped and held steady at about 25%, and about 3-4 months ago during my 6 minute walk test, I de-saturated below 90%, which indicates the need for supplemental oxygen. So I've had to start on oxygen at night and if I dip below 90%.  This has been a BIG adjustment for me.  Emotionally, I was not ready for this.  Thankfully I was surrounded by my husband and my parents when the doctor told me the news, and they were able to carry out the rest of the appointment, while I sat shell shocked, not really hearing anything else, besides defeat. 

After meeting with the team at Methodist, we have decided to proceed with the lung transplant evaluation.  This will consist of 4 days of pretty intense testing in April.  I will have numerous scans, lots of blood-work, a heart catheterization and a few other tests to determine how healthy the rest of my body is. In going through these tests now, it will allow for me to be (hopefully) listed when the time comes, if needed, within a year of these tests.  The point is to do these tests while I am healthy enough and feeling strong enough, so that I don't have to do them in an emergency situation.  The idea is that I will not be listed as "active" (therefore not on the transplant list) just yet.  I was told the typical lung function to "list" at is 20%.  This would require a 5% loss for me.  I reflected upon this the other night, as it wasn't too long ago when I was at 30%.  That 5% drop has been significant ... I can certainly tell in my daily life, I've lost that 5%.  It's much harder to do simple things without getting winded. It plain just sucks, to be honest.  Don't get me wrong, I am so incredibly happy that I am STILL able to be out and about, I am still working, I can still workout (however I am supposed to be using oxygen...I have yet to mentally overcome that obstacle.  I am also working on trying to get a portable concentrator so I don't have to lug an oxygen tank behind me to the gym, uhg). This has been a big adjustment for me, one that hasn't exactly come easy. I keep thinking ... maybe I don't need it, but then, I know the numbers show I do. 

Along with Methodist and St. Luke's here in Houston, we think we might make a trip to Chicago to visit the transplant team at University of Chicago.  Ironically, my lung doctor in Chicago that I saw while we lived there, has joined their team as the transplant pulmonologist. This means, if we were to have a transplant there, she would be the doctor (or one of them) caring for me ... which obviously means a lot to me.  The reality though of having to relocate to Chicago for transplant is something we're trying to mull through. All the doctors we've talked to (including Dr. McShane in Chicago) have encouraged us to try and stay local.  Obviously for a few reasons, this would be our best bet ... but we (I) feel the need to at least explore this option in Chicago.  There is also a possibility that I could be listed at both a center here in Houston and the Chicago center.  This potentially would increase my odds of getting a transplant sooner, as the way it works, the two centers get organs from different areas of the country. Ideally though, we'd like to feel comfortable with a team here in Houston so we don't have to relocate.  The balance between being sick enough for transplant and not being too sick to get a transplant is very delicate. 

Soooo, while I have so many friends who are getting married, vacationing to exotic places, getting pregnant and having children, Bob and I are making life altering decisions about a life changing and life saving surgery, I hope to be fortunate enough to go through someday.  I never thought I would say that, but I can honestly say, I would love to have one day of breathing, where it is unobstructed, clear, deep breaths.  One day where I am not constantly reminded of how hard it is to breathe.  At the same time, I am extremely frightened of what is to come.  I know, I will have to get sicker, to get a chance to get better, and this scares me.  I don't want to be tied down by an oxygen tank.  I've heard how sick you have to be to be transplanted.  I can't imagine losing another 5% lung function, but at the same time I am not ready for a transplant right now.  Dr. McShane expressed to me the importance of going into the transplant surgery in as good of shape as possible, while realizing it's such a hard thing to do.  The hardest thing for me to do, is push myself physically.  This is exactly what you have to do, to stay strong.  But, you can't push your body too hard because then it actually works against you.   I have to be very careful about stressing my heart too much.  Dr. McShane said the recovery your body has to make after a lung transplant is likened to training everyday, for two weeks straight for an Iron Man.  If you know what that training consists of, that's extremely difficult and taxing on the body. So, all of this is such a balancing act, one that is often tricky to manage. 

As with everything though, we take things as they come and roll with it.  Sure, these changes aren't favorable ... but they are expected.  I am so incredibly lucky to have such a supportive group standing beside me all the way.  I can't imagine having to go through this without this support system.  We will move on and we will get through these tougher times, and embrace all those happy moments. I've been fortunate to be connected with some amazing people, great doctors and wonderful friends.  While I know it will have to get tougher before it gets better, I am extremely positive in that I believe it will all work out.  There are good things that will come from all of this.

I hope to update the blog in a much more attentive fashion going forward, especially as we make decisions on where to be listed for transplant. As always, thanks for the support .... and all I ask going forward is positive thinking for my family.  This is extremely difficult on the people I love most and I ask you think of them and send them positive thoughts/energy.  Love to you all who read this blog, thanks for all of your thoughts!!

-Rebecca