Tuesday, November 12, 2013
TWO years ..
It's been two years since my life was saved by a complete stranger. A family lost their daughter and decided that they wanted to donate her organs, two lungs which happened to be a perfect match for me patiently waiting on the list for a transplant. My life will never be the same. I am so incredibly thankful that I have had this amazing second chance at life.
A LOT has happened in the past two years. Some good, some bad, some amazing and some really scary - but you know what? I wouldn't change it for the world. "Angela's" lungs have given me the chance to go on a road trip with Lyndsey and not worry who was going to do or when I was going to do chest physical therapy, I went back to my job, saving tiny premature babies, I've gone rock climbing, I ran a 10k and did a 5k in MUD! I got engaged and married to my best friend and the best man in the entire world!! I was on an episode of Say Yes to the Dress. I've been able to play and run after my nieces and nephews. None of this would have been possible without Angela and without organ donation.
Last year at this time I became pretty sick from the para-influenza virus. I ended up on ECMO (life support) and on dialysis because my kidneys were failing. No one knew if I was going to make it - but I did! Miracles really do happen when you believe. Three months after that I went back to work - when doctors found out I was on ECMO they were shocked to see how well I was going.
A few months ago my lung function randomly started to decrease. I had bronchoscopies and they were negative for acute rejection. My first bronch showed that I grew out Pseudomonas - so I did a month of nebulized colistin and then two weeks of IV Ceftaz. My second bronch showed that the pseudo was gone but now MAC grows. Treatment for MAC is intense. Triple antibitoics for 9-12 months and possibly longer. At my last appointment my doctor said she believed I am in the beginning of chronic rejection because they just can't understand why my lung function keeps dropping. They did a pH probe just to see if my GERD got any worse and since transplant it has. I now have severe acid reflux requiring surgery. I am hopeful that between the treatment for MAC and the surgery that my lung function will go back up and that its NOT actually chronic rejection. My doctor said this is a possibility. So please pray with me, do whatever you have to. I am not ready to say goodbye to Angela. I have so many more things I want to conquer and do and I need healthy lungs for all of them!!!
Monday, March 11, 2013
It's okay NOT to be okay ...
I honestly can't even remember the last time I blogged. I've thought about it often but I guess life happened and it just became something that wasn't top priority to me anymore. Receiving the blessing of a double lung transplant on 11/12/11 was the best day ever. My engagement was also an awesome and absolutely perfect day - but the transplant is number one, only because if I hadn't gotten lungs - well - the engagement would have never been possible. My lungs were too sick and I wouldn't have made it and still be here today.
The first year post-transplant went by really well. I got engaged. I went on a road-trip to Texas with one of my best friends, Lyndsey. I went back to work. I ran (well ran/walked) in a 10K to support Cystic Fibrosis. I was able to go to Disney World in September with my family and keep up with and even RUN after my nephews. I honestly felt like things could not possibly get any better. I had energy, I could breathe - I even worked a LOT of over time hours. Not because I NEEDED the money but because I could, and I loved working.
On my one year anniversary 11/11/12 - my immediate family had a dinner for me. It was a last minute thing because people were still displaced from the horrific Hurricane Sandy, but they didn't want my anniversary, my first "breathday" to go by unnoticed. I felt a little weird that day. A little more sweaty, kind of like I was coming down with something - I honestly thought it was just a little cold. I ended up in the ER a few days later. I was in the hospital for 2 weeks. I was diagnosed with parainfluenza virus. They put me in the MICU so that they could watch me closer and my lungs needed help breathing so I was started on bi-pap. I did go home without oxygen. My PFTs had dropped at my next appointment and it was assumed that I just needed some time to get better, not that anything else was going on. 12/9/12 began the WORST hospitalization I have had and hope to EVER have in my entire life.
It's honestly all a little blurry for me because I was having high fevers and just felt like complete shit. I was again admitted through the ER. I was put on bi-pap. At some point I was transferred to the MICU again. Bi-pap wasn't enough so they intubated me and put me on a conventional vent, but as time went on a regular vent was not enough so they put me on ECMO (extracorporeal membrane oxygenation (ECMO) is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function). Due to the ridiculously high doses of medication to treat the rejection my kidneys also began to fail and they started dialysis. My doctor's prepared my family for the worst. However through some sort of miracle and tons of prayers, I pulled through and was taken off of the ventilator, ECMO and dialysis. It was a very long 8 questionable days for my family and I. When I woke up (they had me completely sedated), I saw all of the prayers and love and support that my family and I had gotten and was completely overwhelmed. I just cried for a few days straight. It's now March and while I am much better, I am STILL recovering.
As if all that wasn't enough - other stuff was happening in my life and it just seemed to all snowball. I felt like I had lost my fighting spirit. At one point I honestly thought it would have been better if maybe I hadn't fought so hard. Today, I know how stupid and idiotic that sounds. I was given these lungs for a reason, and I'll be damned if I let some setbacks ruin my drive for life and the precious gift that I was given.
Recovery from all of that has been hard. I am still not 100%. Everyday is getting better and better. I am having a problem with my red blood cell production (the kidneys produce a substance that goes to the bone marrow to stimulate red blood cell production). Since my kidney's are still recovering, they are not producing enough and I am really anemic. I was just started on a weekly injection which is supposed to boost the production of red blood cells, I am hoping it kicks in FAST!
I also started a Graduate Nursing Education program which I was super excited about in January - the day after I got discharged from the hospital. I ended up deciding to withdraw. I am now on a medical leave and can enroll within a year and start again. I just felt like with everything going on, my health still not being 100% and my mental state somewhat in question - school was just not a smart option. PLUS - I needed time to plan my DREAM wedding!!
On February 5th, my family lost an amazing man. My Uncle Tommy died suddenly and unexpectedly. It has been a really rough time and I know this is just the beginning. My Aunt and Uncle and cousin have lived two houses down from me my entire life! They have always been my second set of parents. A refuge for when I couldn't take my house. My uncle was the most caring man in the world. I went on so many vacations with them. He always tried to make my cousin Erin and I happy. From driving and getting lost for hours just to find us stuffed animals that we wanted in Disney, to moving all of the living room furniture out so that we could roller skate around because it was too cold to go outside. He was such a good hearted man. I am still kind of in denial, I don't even know how my cousin and Aunt are being so strong. I wish with all my heart that there was something I could do to comfort them, I just hope they know how much I love them and that I would do ANYTHING for them.
My friend Lyndsey was in Australia when she had a little blip medically. She also has CF and received a double lung transplant in April 2011. When she came home she had a procedure and found out she had cancer (PTLD). PTLD is a type of lymphoma that can happen post-transplant in various areas of the body. She had surgery to remove the section of her colon where the cancer was, but is still waiting on blood and bone marrow results to see if they need to do chemo or anything further to treat it. Lyndsey and I became really close friends while she was waiting for her lungs. She was transplanted one month before I was put on the list. She has literally become my lifeline and I don't know what I would do if anything happened to her.
I feel like it's okay if I feel pain and I'm hurt but I feel horrible when I see the people I love hurt. The day after my Uncle's passing - I started seeing a therapist. I've been against it for a while because I went when I was younger and had a creepy and bad experience. That particular lady just stared at me like I was insane and expected me to do all the talking. Now, I am really happy with my therapist and actually look forward to going to our sessions. It's really nice to get everything (and there's a LOT) in my head out and to a person who is not involved at all in my personal life. I now highly recommend it if you ever seem to be in funk.
I still have a LONG way to go. My PFTs are still down, I have lost about 15 pounds and I am still lacking energy due to the anemia BUT I do finally see light at the end of the tunnel. Whatever else life hands me, for right now I can take it. After almost dying in December I think I'm even tougher than before. I kind of wanted to write this blog also to let people know that bad things happen. Sometimes it takes a while, but eventually the pieces do fall together. Sometimes you need a reminder from other people, sometimes you need to hole yourself up and close off the world for a little while and sometimes you just need to give it time. EVERYONE has fears and is scared of things that they won't admit to. I can honestly say - I am scared as hell that I will end up in rejection again and in that same state - but I can't let that paralyze me anymore. I am trying to live each day and be thankful for still being here. I am going to consume myself by spending time with the people I love, working out to strengthen my lungs as much as possible, going back to my job which I love and planning my wedding and honeymoon.
The first year post-transplant went by really well. I got engaged. I went on a road-trip to Texas with one of my best friends, Lyndsey. I went back to work. I ran (well ran/walked) in a 10K to support Cystic Fibrosis. I was able to go to Disney World in September with my family and keep up with and even RUN after my nephews. I honestly felt like things could not possibly get any better. I had energy, I could breathe - I even worked a LOT of over time hours. Not because I NEEDED the money but because I could, and I loved working.
On my one year anniversary 11/11/12 - my immediate family had a dinner for me. It was a last minute thing because people were still displaced from the horrific Hurricane Sandy, but they didn't want my anniversary, my first "breathday" to go by unnoticed. I felt a little weird that day. A little more sweaty, kind of like I was coming down with something - I honestly thought it was just a little cold. I ended up in the ER a few days later. I was in the hospital for 2 weeks. I was diagnosed with parainfluenza virus. They put me in the MICU so that they could watch me closer and my lungs needed help breathing so I was started on bi-pap. I did go home without oxygen. My PFTs had dropped at my next appointment and it was assumed that I just needed some time to get better, not that anything else was going on. 12/9/12 began the WORST hospitalization I have had and hope to EVER have in my entire life.
It's honestly all a little blurry for me because I was having high fevers and just felt like complete shit. I was again admitted through the ER. I was put on bi-pap. At some point I was transferred to the MICU again. Bi-pap wasn't enough so they intubated me and put me on a conventional vent, but as time went on a regular vent was not enough so they put me on ECMO (extracorporeal membrane oxygenation (ECMO) is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function). Due to the ridiculously high doses of medication to treat the rejection my kidneys also began to fail and they started dialysis. My doctor's prepared my family for the worst. However through some sort of miracle and tons of prayers, I pulled through and was taken off of the ventilator, ECMO and dialysis. It was a very long 8 questionable days for my family and I. When I woke up (they had me completely sedated), I saw all of the prayers and love and support that my family and I had gotten and was completely overwhelmed. I just cried for a few days straight. It's now March and while I am much better, I am STILL recovering.
Me on ECMO & dialysis - almost unrecognizable (December 2012)
As if all that wasn't enough - other stuff was happening in my life and it just seemed to all snowball. I felt like I had lost my fighting spirit. At one point I honestly thought it would have been better if maybe I hadn't fought so hard. Today, I know how stupid and idiotic that sounds. I was given these lungs for a reason, and I'll be damned if I let some setbacks ruin my drive for life and the precious gift that I was given.
Recovery from all of that has been hard. I am still not 100%. Everyday is getting better and better. I am having a problem with my red blood cell production (the kidneys produce a substance that goes to the bone marrow to stimulate red blood cell production). Since my kidney's are still recovering, they are not producing enough and I am really anemic. I was just started on a weekly injection which is supposed to boost the production of red blood cells, I am hoping it kicks in FAST!
I also started a Graduate Nursing Education program which I was super excited about in January - the day after I got discharged from the hospital. I ended up deciding to withdraw. I am now on a medical leave and can enroll within a year and start again. I just felt like with everything going on, my health still not being 100% and my mental state somewhat in question - school was just not a smart option. PLUS - I needed time to plan my DREAM wedding!!
On February 5th, my family lost an amazing man. My Uncle Tommy died suddenly and unexpectedly. It has been a really rough time and I know this is just the beginning. My Aunt and Uncle and cousin have lived two houses down from me my entire life! They have always been my second set of parents. A refuge for when I couldn't take my house. My uncle was the most caring man in the world. I went on so many vacations with them. He always tried to make my cousin Erin and I happy. From driving and getting lost for hours just to find us stuffed animals that we wanted in Disney, to moving all of the living room furniture out so that we could roller skate around because it was too cold to go outside. He was such a good hearted man. I am still kind of in denial, I don't even know how my cousin and Aunt are being so strong. I wish with all my heart that there was something I could do to comfort them, I just hope they know how much I love them and that I would do ANYTHING for them.
My friend Lyndsey was in Australia when she had a little blip medically. She also has CF and received a double lung transplant in April 2011. When she came home she had a procedure and found out she had cancer (PTLD). PTLD is a type of lymphoma that can happen post-transplant in various areas of the body. She had surgery to remove the section of her colon where the cancer was, but is still waiting on blood and bone marrow results to see if they need to do chemo or anything further to treat it. Lyndsey and I became really close friends while she was waiting for her lungs. She was transplanted one month before I was put on the list. She has literally become my lifeline and I don't know what I would do if anything happened to her.
I feel like it's okay if I feel pain and I'm hurt but I feel horrible when I see the people I love hurt. The day after my Uncle's passing - I started seeing a therapist. I've been against it for a while because I went when I was younger and had a creepy and bad experience. That particular lady just stared at me like I was insane and expected me to do all the talking. Now, I am really happy with my therapist and actually look forward to going to our sessions. It's really nice to get everything (and there's a LOT) in my head out and to a person who is not involved at all in my personal life. I now highly recommend it if you ever seem to be in funk.
I still have a LONG way to go. My PFTs are still down, I have lost about 15 pounds and I am still lacking energy due to the anemia BUT I do finally see light at the end of the tunnel. Whatever else life hands me, for right now I can take it. After almost dying in December I think I'm even tougher than before. I kind of wanted to write this blog also to let people know that bad things happen. Sometimes it takes a while, but eventually the pieces do fall together. Sometimes you need a reminder from other people, sometimes you need to hole yourself up and close off the world for a little while and sometimes you just need to give it time. EVERYONE has fears and is scared of things that they won't admit to. I can honestly say - I am scared as hell that I will end up in rejection again and in that same state - but I can't let that paralyze me anymore. I am trying to live each day and be thankful for still being here. I am going to consume myself by spending time with the people I love, working out to strengthen my lungs as much as possible, going back to my job which I love and planning my wedding and honeymoon.
March 9th 2013!
Kristy, Myself and Lyndsey this past weekend celebrating Lyndsey's 28th BDAY!
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