Physically, Emotionally, Mentally and Spiritually
I am putting this out there because I want to be honest about my story and some of this may come as a shock to some people, but when I started writing this I told myself that I had to be honest...and because you have to understand where I came from to grasp the transformation that has taken place.
Physically Back to My Story Page
Some people, especially those who have never met me or haven't seen me in a while - don't really understand what LAM does to you physically. A year ago I was diagnosed with "end-stage lung disease" and I don't think people really understand what that can do to the rest of your body.
Because my airways are blocked by cysts, whenever I do anything physical, my organs are being deprived of oxygen. My heart begins to pump overtime to compensate for the lack of oxygen. When I get out of breath, it's almost like having a panic attack - but I just have to sit there and breathe through it. Sometimes I feel like I'm going to pass out and sometimes I swear I'm about to die. It's the scariest feeling in the world. It takes several minutes to catch my breath... each gasp barely satisfying my body's need for oxygen.
It's a fine line... I need to be active to stay strong, but I need to make sure I have enough oxygen that I'm not hurting my other organs. I dread getting up and doing anything that will get me out of breath. Sometimes, when I'm having a bad day, I struggle just sitting there. My chest is tight and breathing is labored. I have to think about every breath and it's exhausting.
I've started to lose my appetite (it's hard to eat when you can't breathe) so now I'm losing weight. It's sort-of a snowball effect, because once you start to become weak you can't exercise as much to stay strong and you just become weaker and weaker as time goes by. The only good news is, the sicker you are, the higher up you get on the lung transplant list. And the more it makes you want to just have the surgery already!! As of my last doctor's visit on 5/14/08 I weigh 113 lbs. (I'm 5'2")... In February I weighed 128 lbs. I can see the change in weight loss in my body... my legs have lost a lot of muscle mass... you can see my ribs more easily now... my face has thinned out. My goal weight was always 115 but not like this...
I'm so weak that I can't walk more than maybe 5 yards without having to stop and sit down or grab a hold of something. I am finally at the point where I have to use wheelchair when I go out places. And I have to wear my oxygen 24/7. People do stare at me when I go out, but I know it's because I look so young (I'm 28 but I look 16, or so I've been told) and people just don't know what's wrong with me. I'm going to order some shirts that say "Waiting for a lung transplant" on the front and "No, I've never smoked" on the back.
There are some other things that are happening internally that we just discovered with the transplant evaluation testing at Shands.
- I have osteoporosis - which is directly related to my inability to be active. As you lose muscle mass, you also lose bone density. This can easily be treated, though. They put me on calcium supplements and Fosamax. Hopefully, once I become active again with my new lungs, my bones will get stronger, too.
- I have a PFO (Patent Foramen Ovale) in my heart - which is basically a hole in my heart between the right and left chambers. This is actually pretty common, about 25% of the population have it... but they think mine opened up because of the pressure from my lungs. This can easily be fixed with a heart cath surgery but they may decide to wait until after my transplant and see if it fixes itself all on it's own. The problem with the PFO is that the right chamber of your heart wants all the oxygen, so it's leaking over into the left chamber, causing oxygen desaturation - which doesn't help my shortness of breath. So the little oxygen that I DO get is not as effective as it should be.
- Iron and red blood cells - My body is over-producing red blood cells to make up for the lack of oxygen. This is causing my iron to be depleted. My iron level is dangerously low. That's why I'm so tired all the time. I'm starting Venofer Iron IV therapy on Monday 5/19/08. Hopefully this will help me get some of my energy back.
- My lungs are hyper-inflated. Because LAM is both restricive and obstructive, air has difficulty getting in and also getting out. So air gets trapped in my airways, causing my lungs to literally get bigger. As they get bigger, they fill my rib cage more and it gives me less room to take a deep breath. That's why it's hard for me to lay on my back or put pressure on my rib cage. Because of the hyperinflation, it has also pushed my heart down a little. I can feel my heart slightly beating just outside of the bottom of my ribcage in the left center of my chest.
Also, I'm on 6 liters of oxygen now (at rest - it's almost like having a blow dryer up your nose, but you get used to it) and 15 liters (I wear a mask) when I'm doing my treadmill or leg squats (required by my physical therapist at Shands). My nose is constantly dry now and I'm always having nose bleeds. It's really hard getting used to. And I sleep with it on, too... so the cannula goes behind your ears (like glasses) and my ears always hurt now! (My poor ears)... It will be great to not have to wear oxygen any more...
I can still get up & down, take a shower and get dressed on my own (even though I get out of breath doing it)... but I don't do any housework or laundry or cook (which I used to really enjoy). My poor husband goes to work all day and then comes home and takes care of the house and dinner and anything else I might need him to do. He does his best not to complain, but this is something you should be doing for your spouse when you're 90 - not when you're 31 (that's how old Brian is).
I can only compare it to someone that was fine one day and then maybe got into a terrible accident and all of the sudden they wake up paralyzed. There is nothing more frustrating than wanting to be able to do something that your body won't physically let you do. I just feel lucky that I have the surgical option to get my mobility back.
I have to tell you, being 28 years old and watching your body deteriorate before your eyes is more frightening than you can imagine. My "tight jeans" are now falling off of me. At first I was like "oh, look - I lost some weight and I'm looking good!" But now the realization that it's not stopping is starting to set in... and it's scary. I am starting to juice (my dad is teaching me) and I'm taking nutritional supplements and also some Shaklee shakes to help build my muscle back up. I just hope that I don't continue to lose weight.
I just can't wait to get my new lungs and get my body back in shape!
Emotionally, Mentally, Spiritually Back to My Story Page
To say this has been an emotional roller-coaster would be an under-statement. I did go through all the stages... shock, denial, anger, sadness, etc. I have been under a lot of stress <obviously> but I think I've been handling it very well.
This is the part where I tell you that this is the best thing that has ever happened to me. Seriously.
A lot of people don't know this about me, but - emotionally - I was a wreck the last 10 years or so of my life. (Probably more). I have always been a perfectionist. I was never good enough for myself... I didn't like myself. I would have a hard time looking in the mirror and liking the person staring back. I would bury my emotions and pain deep down inside of me and they would eat me alive. I think that's what started the emotional wreck that I became.
Even when I met my husband, a perfection of a man... I was still miserable and had buried my emotions so deep that I couldn't even remember why. The start to our marriage was rocky. There were a lot of outside problems - that were out of our control - and were an emotional challenge for us. But my husband wouldn't let it tear us apart. He was my rock and the glue that held us together. I would try to push him away, but he wouldn't let me. He really taught me how to be a wife... and he loved me as much as he could and we somehow got through those trying times.
We were on the brink of losing it all. His business, our house (you know how the housing market is now!), our sanity! I absolutely HATED my job, hated my bosses even more and the worst part was I wasn't even getting paid! (Crazy, yeah - that's a whole other story that I don't even want to get into). We were about to declare Bankruptcy and were at least 3 months behind on all our bills. Just when we thought we had finally hit rock bottom, I got diagnosed with LAM.
Now... most people would probably just go jump off a bridge at this point. But it did something to me. I had to suddenly change who I was. It was like my body had physically manifested something that wouldn't allow me to continue the way I was going. I got the wake-up call that most people get when they are 50 and have a heart-attack. When life does something like this to you, you can either become defeated by it or let it change you for the better. I chose to change.
I stopped having OCD. I stopped having to be in control of everything. I stopped and smelled the roses. Everything was more beautiful and nothing was so serious. My husband and I now love each other in ways that I wish other people could love each other... but you just can't until you've had one of your lives threatened to be taken away. I can honestly say that I am not the same person that I was before.
I look in the mirror and I love myself so much - every part of me - and I want to live SO BADLY... I have been able to forgive the pains and trials in my past, because you just can't let that stuff eat you up inside. Life is literally too short to worry about stuff like that all the time. It has taken me a year to get to this point, and I've been working with some really spiritual people, but I can say that I have never been this happy in my entire life before.
I have learned about the law of attraction and the Universe and have put it to work in my life. I have been able to grow my spiritual relationship with God along with my husband, and we have seen Him work blessings in our life every day.
Since my diagnosis, we stopped trying to do it all on our own and just turned it over to God. Because this is just SO MUCH bigger than anything we could possibly do on our own. He has brought people into our lives that have helped us through this whole process (you know who you are) and it wouldn't be the same without them. One of my childhood best friends, Bryan Clark, approached my husband about a business opportunity with United First Financial that has saved us from losing our house and declaring bankruptcy. Not only has it helped us, but it has given us the opportunity to help others, and there is nothing more rewarding than that.
So we went from lower than rock-bottom to being the happiest we have ever been in our entire lives because of all of this. So when people feel sorry for me, I tell them not to. Because this truly is the best thing that has ever happened to me and I honestly wouldn't take it back for anything. I know that God will help us through this and we can live the rest of our lives happier than ever! (In fact, you should be jealous - because not everyone gets a new lease on life like this!)
I'm just so lucky to have people that love me and a husband that has been willing to stick by me through all of this. Those are just the cards that we have been dealt and this is just what we have to do to get through it.