Hospital deja vu

After a busy Thanksgiving Day week, I enjoyed relaxing over the weekend.  After that it was back to our regular routine.  A month previous I had finally convinced Curtis that he needed to have a yearly physical done at the doctor's office so that they could check all of his labs.  He was NOT looking forward to this appointment, especially since we set it up with one of my doctor's, who just happens to be female.  Just so you don't think that he was going to see some off the wall doctor, don't worry he wasn't.  Dr. Elizabeth Rulon is a Family Practice doctor, who also happens to do CF care & OBGYN appointments too.  She is AMAZING!!!

Anyway, the day of his physical was Tuesday November 29th.  That morning I woke up around 5:30 am coughing a lot.  I was also having some pain in my back ribs & was tossing & turning, but I really didn't think much of it since there are often nights/mornings that I have a hard time breathing & therefore sleeping.  I also remember coughing really hard about 8 am & the pain that I had in my back went to the front of my chest.  I finally gave up soon after 8 & decided to just get up for the day & do my morning treatments since I obviously needed to do them.  Doing abuterol & using the Vest didn't really help me to feel better.  I was still struggling to breathe & I still had the pain in my chest, but the pain honestly just felt like I had a rib out (which I've coughed hard enough many times to do & also pull/strain muscles).  My pain was also coming & going in waves.  I decided to still go to my chiropractor appointment for that morning, but had Sam drive me because I wasn't sure about my pain & my breathing.  At my appt. I told my doctor about my pain & he gently worked on my spine & rib cage. Neither one of us thought that I could have a collapsed lung.  I actually felt better after my appt & had Sam take me home.  She dropped me off at the house & then left for school for the day.  10 min after getting home the pain came back & I was struggling a lot more to move & breathe.  After about 15 min I realized that I probably had a collapsed lung, but still wasn't sure because it didn't really feel anything like it did before.  I called Curtis & had him come home early.  I would have called the doctor, but I knew that we were going to be in the office w/in the hour for his appt, so I knew it wasn't going to get me there any faster. Besides, the pain was still coming & going in waves so I still wasn't 100% sure it was a collapse, last time everything hurt & I could hardly move w/out wanting to pass out.  So we went to Curtis' appt & after all of his check-up was done we asked Dr. Rulon to listen to my lungs "just to make sure that they were ok" since I was still struggling to breathe & having pain.  She couldn't hear much air movement on my right side & sent us over for an x-ray.  BIG CLUE right there!  Curtis' appt ended up being a good one for him, but I stole his thunder...I just couldn't let him have the spotlight for the day.  Sorry honey!

So it turns out that I did have another lung collapse, but this time it was about a 50% collapse, where last time it was about 90%.  So x-ray sent me immediately over to the ER where they put me through another horrible chest tube placement and admitted me to the 7th floor of the hospital.  This time I knew what I was getting into with my treatments, so it made it a little easier to deal with.  BUT since it had only been 2 WEEKS since I was last in the hospital & I knew I wasn't coming home until the chest tubes had been out for a few days, I was preparing for a long stay.  That was emotionally hard!  I didn't get crepitus this time around, but I still ended up with 2 chest tubes because I had a pocket of air at the bottom of my lung that wasn't healing.  This time I wasn't nearly in as much pain as far as chest pain goes....but my head was killing me.  I don't know why but this time around I had horrible migraines with this.  They would give me pain medication & my head would still hurt.  I was also sick to my stomach one day & felt horrible because I had thrown up in front of a few ladies from church (I know people understand, but I hate being sick in front of others).  Because of my pain medication I also slept a lot.  I remember one day my Mom had come up to be with me & she finally said she was going to go because she could tell that all I needed to do was sleep.  Thankfully after 5 days of having 2 chest tubes & was able to get them out.  I was also able to go home after being in the hospital for only 8 days.  That was a huge blessing!

During this hospital stay we all started talking more seriously about getting me on the lung transplant list.  I guess once you have a 2nd collapse on the same lung w/in 3 months of each other that it is not good.  (duh!  It also doesn't feel good either!)  Curtis & I started to do our own research, well mostly Curtis.  I don't really care much about the statistics....ok, I do, but for me it's not about the numbers, honestly it comes down to how I feel.  I can either keep feeling lousy & keep watching my body get weaker & weaker, or I can try & get a lung transplant & have a better quality of life.  Besides, my whole life I've been the exception to the rule...I've surpassed all of the statistics & lived longer & had a better quality of life then doctors ever though that I could when I was born.  Medical technology is improving all the time, I've benefited from new medications & new procedures.  Heck, 30 yrs ago lung transplants weren't performed yet.  The 1st successful double lung CF transplant wasn't done until 1989...think about how much better it is now! :)  Anyway, we were still in the beginning stages of looking into this.  Our doctors kept talking about how they needed to meet together & "run the numbers" to see if it would even be a good time to start the process.  We knew at this point that there are several tests that they use to get a lung score for me that determines where I would be at on the list.  We had already started many of those tests so that we had a "base line" for me.  Until we had our meeting with the doctors, we couldn't really go forward with all of this.  So we basically looked at statistics & information about the various CF centers & hospitals in the country that do lung transplants.  We also knew that it there was going to be a waiting period & that I was going to have to relocate to the area where we were going to have the transplant.  Usually they like you to have family support, but most of our family lives in Idaho & the closest centers where they do lung transplants are in Salt Lake City, UT; Denver, CO; & Seattle, WA.  Curtis' sister & family had just moved to Iowa, & they have a transplant hospital that is 90 miles away from their home, so we were kinda thinking about going out that way...but didn't really know where we would go until we met w/the CF team here.  We finally set our meeting for December 20th & put our faith & trust in the Lord that everything would work out the way it was supposed to.