I have been having many more good days then bad lately! I am so happy with my progress in the last 2 months since transplant. I still feel at times that I am having an out of body experience...that this still isn't really me, that it isn't really my life. But it is. The last few days I have felt great...and have had that awesome "nostalgic" feeling...the kind where you are young, carefree, not a worry in the world. The kind that gives you that feeling of driving in a car on a warm fall night with your windows down and the cool air rushing through. I had one of those nights last night. We had went to a friend's house for pizza, and to see Bella, our dog we had adopted and then ended up having to find a good home for because we unfortunately could not take care of her like we should. The night was perfect for me...family, friends, laughs, but most of all just being alive and breathing in the fresh air. I commented to one of our friends as we walked across her yard to go see Bella across the road that 3-4 months ago I would not have been able to walk that far. How I would've been so out of breath. I also said that I would've been dreading the short walk knowing how out of breath I would've been. But yesterday as we walked over (twice for me!) I wasn't out of breath and I could fill my lungs with the wonderful, fall, country air! It was an awesome feeling and one that I will not forget. I said a little prayer for my donor at that moment, thanking him/her for their lungs that once gave them life, now gave me a second chance at mine.
So I often get asked many questions. the first one of course is "How are you?!?" Before transplant I always hated this, but I know no one really knows what else to say, so this is it. I would always reply, "I'm here."...or "hanging in there." This was the truth. I was here and I was hanging in there. If I was out and about (which was rare) you would likely see me with a smile on my face. To be honest, smiling was the last thing I wanted to do. All I wanted to do was curl up in the fetal position, stick my thumb in my mouth and cry. Sure I had all of the questions of "why me" and sometimes even maybe felt sorry for myself. But I would pull myself together to produce a smile and changed my thinking to "why not me?" and what lessons can I and will I learn from all of my experiences? Daily living was so very hard....imagine yourself getting up every morning and before you can make it to the restroom you feel like you have ran a marathon. Would you feel like smiling? Would you feel like moving at all?
Today when I am asked, "How are you?" I still smile (usually it's not a fake one!) :) and I usually say that I am doing pretty well. This is the truth, as I am doing pretty well and for the most part I am feeling pretty well. However, I still feel like I am not being totally honest. See, what always sits in the back of my mind is that things will never be the same for me. I know everyone goes through changes in life, and this is a major change for me. A lot of people think that now I have had my lung transplant that the "old Kara" will and has returned. That couldn't be farther from the truth. Sure, I am still me, but I am different now. I have changed from that caterpillar and have emerged as a brand new being. What people do not understand is that transplant is not a cure!!! It's not. Sure, it "buys us more time", but I constantly have to be on the lookout for rejection. In fact, my last bronch (Sept 5) showed I had minimal rejection. A1 B0; Airways 1, Bronchioles 0. No rejection would be A0 B0. I am being treated with prednisone for now with the hope that the rejection will go away. There is the chance that it will not go away, and there's the chance that it could/would get worse. I am staying optimistic though and I will go back for another bronch on Sept 27 to check and see if it's still there. Rejection will always be in the back of my mind, and something that I will get multiple times over the course of the rest of my life. When I had my transplant, I was trading in one set of problems (my old lungs that didn't work) for another set of problems (new lungs that work, but the possibility of rejection, meds to take the rest of my life that can cause cancer, or the need for another organ transplant). None of that may happen, but with me being so young, it is a strong possibility I would have to have a 2nd lung transplant...or a transplant for my kidneys because of the damage all of the meds did to them...or I could develop cancer from all of the meds I take...the list is practically endless. Now I'm not saying that I am sitting around now worrying about all of these things, because I am not. I am trying to still recover from my transplant (technically I should still be in Cleveland!) and live my life. Heck, I could get hit by a bus walking across the street! We do not know when our time is up...I thought perhaps mine was and I was ready for whatever lie ahead. Now I am just thankful for this second chance I've been given!
Another common question I get is, "So everything is great now?" I answered this a little bit in the above paragraph. My answer to this is "to an extent". Everything will never be "great". I still have to be very careful in what I do and where I go because the risk of infection is greater for me then for anyone that is "healthy". That is why I wear my mask all of the time. (although I didn't wear it last night at our friends...I probably should have, but we were outside with the breeze, I kept my distance from others, and for once I just wanted to feel "normal"! :) All of the medications I am on suppresses my immune system and therefor I am more prone to catching things and I will likely end up in the hospital over something that a "healthy" person calls the common cold. The sniffles to you = respiratory infection and time in the hospital for me.
Which brings me to another question I get asked...and maybe not get asked, but the stares..."Why the mask?" and/or "How long do you have to wear that?" I laugh because I can clear the room (or elevator) rather quickly when I have my mask on and people don't know who I am. I have told Doug that I am going to put a sign on my front and back that says, "Don't worry...it's not contagious. I'm protecting myself from YOU!" People think I am the one that is sick, but in actuality I am protecting myself from everyone else's germs. I've got to protect these new lungs!!! So that is why I am wearing it. As to how long...I haven't really been given a time frame. Cleveland told me for at least the first 3 months when I am out and about. If people come over and they are sick, THEY need to wear a mask. (However, it's easier if just I do....BUT...if you are sick...or your kids are sick, please don't come visit!) With flu season just around the corner though, I will be wearing it out everywhere for at least the first year, and maybe even after that. I do not like wearing the mask. It is very annoying...hot...steams up my glasses....but, it is protecting my lungs from germs, and keeping me healthier, so I really am not going to complain. So there is no answer as to how long. I could probably stop wearing it after 3 months (but to clinic, hospitals, schools for the first year) but I probably will keep wearing it after the 3 month time frame.
I am still trying to adjust to my new life and what I can and cannot do. I am still going to have my bad days, that's for certain. It will take me awhile to get back to my "new" normal, and I am going to have some rocky roads ahead....but I am not going to complain. I'm going to cherish each day that I am given and look at it with a new set of eyes. (and lungs!) I am not sure if I will be able to return to any type of work, my doctors have not said and I still do not know what's going on with the vision in my left eye as that has not come back yet either. Doug and I will be going back up to Cleveland at the end of the month for more appointments and tests. I will see the eye doctor and hopefully I will gain some insight on my sight! ;) I will also have another bronch to check on the rejection. I just hope that I do not have a repeat of the last bronch where I remember EVERYTHING!! :(
So to answer your questions: Yes, I am doing fine, great, fantastic! For the most part anyway. :) Yes, I have to wear the mask and I am uncertain as to how long I will wear it, but it is protecting me from many airborne germs. Most importantly keep in mind that my transplant is not a "cure". It is an answer to a prayer and I am so very thankful, but I will continue to live a different and more careful life from now on. If you or your kids are sick (or you've been around someone sick) please keep your distance! It's not that I don't want to hug you or be around you, I just don't want or need the sickness as it can and will make me very sick and my lungs will not be very happy!
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