"To breathe easy is to live free". I saw that quote before Elias' transplant as he lived in a state where CF had robbed him and our family of so much. Now post transplant this is what that quote means to me.
It means breathing room air without being tethered to an oxygen concentrator or Bipap machine.
It means enjoying taking a shower because the humid air doesn't make it impossible to breathe.
It means deciding as a family to go somewhere and just leaving.
Not having to ask parents to come along to help with Elias and the kids and if no one is free, not being able to go.
Not having to calculate how many oxygen tanks we will need for the number of hours we are gone.
Not having to leave him at home because today just isn't a good day.
Not having to bring a wheelchair along.
It means making plans and not planning on having them ruined by yet another exacerbation and hospital stay.
It means not living in a hospital recliner and showering in a public hospital shower for months just to make sure his anxiety stays controlled and I don't miss the Dr's rounding.
It means walking by my husband as he lay napping on the couch and not pausing just to make sure he's still breathing.
It means not reaching my hand out to touch him at night for the same reason.
It means sleeping in the same bed again rather than him sleeping in a recliner in the living room.
It means family vacations.
It means running in the yard, play with our kids and teaching our son to ride a bike.
It means walking the dog.
It means walking down the stairs to basement to do laundry and back up again.
It means going from less than 20% lung function to that of an average person.
It means no oxygen concentrator, no continuous IV's, no feeding tube because it just takes to much effort to breath and eat at the same time, and no chest tube hanging out of his chest to prevent another pneumothorax before transplant.
It means no regular visits from home health and infusion nurses.
It means not fighting every. single. day. to figure out how to get him on the transplant list and hoping that lungs will come in time.
It means scars that symbolize life and a future as well as emotional and physical trauma.
It means conversations about going back to work some day.
It means more holidays, birthdays, anniversaries and years together.
It means living life like a fairly normal family again.
It means so much more, but ultimately it means more time, more experiences, and more memories.
Monday, April 22, 2019
Thursday, January 3, 2019
Dreams and goals
I'm currently reading "Girl, Wash Your Face", by Rachel Hollis. I'll admit, I resisted reading this book for a long time. It was so hyped up and I often find that when something is really hyped up and I finally indulge, I am left disappointed. Maybe I expect something more after all of the hype, maybe I expect to be deeply and profoundly changed and then I'm not. So I didn't read the book or listen to the book.
But then I had a break from school and while I didn't read the book I had bought the book and it was sitting on my Kindle, waiting to be opened. So, I opened it and began reading and it did actually begin to resonate with me. Then I reached a chapter that challenged me. Do you ever read those books of encouragement and hit a spot where every page or every paragraph even forces you to stop reading and process what you read and how it pertains to your life? Maybe you don't, but I do. It's like I can't go on reading until I stop and reflect and pray, but then I also have to keep reading.
This chapter was about dreams and spoke to me and forced me to stop and really reflect on my dreams and goals and what those looked like for me. Before my husband's double lung transplant, I had the goal of starting an amazing birth centered business. A friend of mine and I even talked about starting it and we looked for spaces to rent. But the timing never felt right for either of us so it was pushed to the side. Since then, whenever I read books or blog posts similar to what I'm reading now, I always correlate it to my business as a massage therapist and doula and the business that I have envisioned for so long. But life changed after his transplant and new dreams and goals began to unfold. Yet, I had trouble applying many of these things I read to this new goal of becoming an RN and hopefully, eventually a nurse practitioner, and I had to reflect on why I could only read these books and posts of encouragement and success through this lens of the business that may or may not even be in my future at this point. In doing so I realized that my mentality needed to shift.
This book that I am reading does not only apply to entrepreneurs. Yes, the author herself is a very successful entrepreneur and many of my friends who have been inspired by this book are also entrepreneurs, but she is not only speaking to this population. She is writing to anyone and everyone who has any sort of dream. I realized that I keep watching my friends on social media who are amazing, strong and successful female entrepreneurs who are rocking the businesses that they built and that is who I dreamed of being and I have had a really hard time letting that go. Some parts of that are envy, some are grief. To stop and chase a new dream has, in so many ways felt like I am giving up something that could have been great before it became great. But I also have a family to support and it takes an unpredictable amount of time to grow a business that can solely support a family of four. So, when I really stopped and thought about what my current dream was, it was exactly that. My dream is to be able to support my family so that we can collectively meet our goals that we always talk about, but can't do right now and my new dream of being an RN will allow me to do that.
Nursing school is hard, that alone should be goal enough and I don't give myself enough credit for walking this path. The end goal however, is to become an employee and even before massage school, my goal was self employment. This has been a huge shift in mentality for me. That is years of seeing my life play out one way for one event (decline and transplant) to change my whole trajectory and it has been a process that I am continuing to work through.
I read another book this past and in it, the author talked about how we often have life events where we have life before that event and then there is life after the event. That event is declined transplant for us. I am not the only one who's goals and dreams have shifted, and I am really starting to feel that shift in my heart and soul in a good way, Elias has experience that shift as well. We have both grieved, we have both dreamed and we are both on new path than what we were on before.
But then I had a break from school and while I didn't read the book I had bought the book and it was sitting on my Kindle, waiting to be opened. So, I opened it and began reading and it did actually begin to resonate with me. Then I reached a chapter that challenged me. Do you ever read those books of encouragement and hit a spot where every page or every paragraph even forces you to stop reading and process what you read and how it pertains to your life? Maybe you don't, but I do. It's like I can't go on reading until I stop and reflect and pray, but then I also have to keep reading.
This chapter was about dreams and spoke to me and forced me to stop and really reflect on my dreams and goals and what those looked like for me. Before my husband's double lung transplant, I had the goal of starting an amazing birth centered business. A friend of mine and I even talked about starting it and we looked for spaces to rent. But the timing never felt right for either of us so it was pushed to the side. Since then, whenever I read books or blog posts similar to what I'm reading now, I always correlate it to my business as a massage therapist and doula and the business that I have envisioned for so long. But life changed after his transplant and new dreams and goals began to unfold. Yet, I had trouble applying many of these things I read to this new goal of becoming an RN and hopefully, eventually a nurse practitioner, and I had to reflect on why I could only read these books and posts of encouragement and success through this lens of the business that may or may not even be in my future at this point. In doing so I realized that my mentality needed to shift.
This book that I am reading does not only apply to entrepreneurs. Yes, the author herself is a very successful entrepreneur and many of my friends who have been inspired by this book are also entrepreneurs, but she is not only speaking to this population. She is writing to anyone and everyone who has any sort of dream. I realized that I keep watching my friends on social media who are amazing, strong and successful female entrepreneurs who are rocking the businesses that they built and that is who I dreamed of being and I have had a really hard time letting that go. Some parts of that are envy, some are grief. To stop and chase a new dream has, in so many ways felt like I am giving up something that could have been great before it became great. But I also have a family to support and it takes an unpredictable amount of time to grow a business that can solely support a family of four. So, when I really stopped and thought about what my current dream was, it was exactly that. My dream is to be able to support my family so that we can collectively meet our goals that we always talk about, but can't do right now and my new dream of being an RN will allow me to do that.
Nursing school is hard, that alone should be goal enough and I don't give myself enough credit for walking this path. The end goal however, is to become an employee and even before massage school, my goal was self employment. This has been a huge shift in mentality for me. That is years of seeing my life play out one way for one event (decline and transplant) to change my whole trajectory and it has been a process that I am continuing to work through.
I read another book this past and in it, the author talked about how we often have life events where we have life before that event and then there is life after the event. That event is declined transplant for us. I am not the only one who's goals and dreams have shifted, and I am really starting to feel that shift in my heart and soul in a good way, Elias has experience that shift as well. We have both grieved, we have both dreamed and we are both on new path than what we were on before.
Saturday, September 1, 2018
Star Wars and Butterflies
Next week my sweet baby boys will go to school for the first time. They are 4 and will attend our public school district's half day pre-k program. My one son, Lucas, is so very ready. He is incredibly social and is looking forward to making friends.
He is what one often thinks of when they think of boys. He loves to climb and jump off of things (even though he is afraid of heights). He loves trucks and construction equipment and Star Wars. We have however tried to not feed into too many gender stereotypes while raising our kids. We haven't been perfect and our home is mostly filled with toys that would traditionally be thought of for boys but we also have things like a toy kitchen, a teapot set, dolls and a Peppa pig dollhouse that our other son absolutely adores.
I can't say that it's because of this, but we are cautious not to tell our boys that certain toys and certain colors are for girls, so when asked what his favorite color is, Lucas might tell you "all the colors of the rainbow". He has pink and purple leopard print slippers that he picked out once and that he loves because they are "beautiful". He also has a couple of shirts with glitter or sequins that he found on a clearance rack after the 4th of July and that he loved because they were shiny. So it didn't surprise me when I stumbled across some backpacks online and he told me that he wanted the one with the butterfly. It was pink and purple and clearly made with girls in mind. It was also far too small to take to school and he already has a small backpack, but had I been in the market for buying one, I would have absolutely purchased him that backpack because pink is just a color and butterflies are beautiful.
My fear as Lucas heads off to pre-k is that he will express his love for all the colors and things that are beautiful and that it won't be long before another child will tell him that those things are for girls because that is what that child has been taught. Lucas is a child who has a strong will and personality but is also sweet, sensitive and easily influenced by others. I so desperately want to keep my children innocent for as long as possible. To spare them the judgment of others and the boxes that we are all too often placed into. Kids are so authentically themselves at 4 and I so want to preserve that in them so that they will grow into authentic adults, but we all know that kids are shaped by their peers, for better and for worse, and that we all raise our children differently, much in part based on how we ourselves were raised.
I know I can't shelter him from the boxes that society has built and that tell him what things are for boys and what things are for girls, but I do hope that I can continually remind him that it's okay to be who he is. That is it's okay to like all of the colors, it's okay to have emotions and express them. It's okay to cry and that he doesn't have to be "tough" because he's a boy. That it is okay to be authentically himself, a lesson I'm still trying to learn as an adult.
He is what one often thinks of when they think of boys. He loves to climb and jump off of things (even though he is afraid of heights). He loves trucks and construction equipment and Star Wars. We have however tried to not feed into too many gender stereotypes while raising our kids. We haven't been perfect and our home is mostly filled with toys that would traditionally be thought of for boys but we also have things like a toy kitchen, a teapot set, dolls and a Peppa pig dollhouse that our other son absolutely adores.
I can't say that it's because of this, but we are cautious not to tell our boys that certain toys and certain colors are for girls, so when asked what his favorite color is, Lucas might tell you "all the colors of the rainbow". He has pink and purple leopard print slippers that he picked out once and that he loves because they are "beautiful". He also has a couple of shirts with glitter or sequins that he found on a clearance rack after the 4th of July and that he loved because they were shiny. So it didn't surprise me when I stumbled across some backpacks online and he told me that he wanted the one with the butterfly. It was pink and purple and clearly made with girls in mind. It was also far too small to take to school and he already has a small backpack, but had I been in the market for buying one, I would have absolutely purchased him that backpack because pink is just a color and butterflies are beautiful.
My fear as Lucas heads off to pre-k is that he will express his love for all the colors and things that are beautiful and that it won't be long before another child will tell him that those things are for girls because that is what that child has been taught. Lucas is a child who has a strong will and personality but is also sweet, sensitive and easily influenced by others. I so desperately want to keep my children innocent for as long as possible. To spare them the judgment of others and the boxes that we are all too often placed into. Kids are so authentically themselves at 4 and I so want to preserve that in them so that they will grow into authentic adults, but we all know that kids are shaped by their peers, for better and for worse, and that we all raise our children differently, much in part based on how we ourselves were raised.
I know I can't shelter him from the boxes that society has built and that tell him what things are for boys and what things are for girls, but I do hope that I can continually remind him that it's okay to be who he is. That is it's okay to like all of the colors, it's okay to have emotions and express them. It's okay to cry and that he doesn't have to be "tough" because he's a boy. That it is okay to be authentically himself, a lesson I'm still trying to learn as an adult.
Saturday, July 28, 2018
Why I Don't Share About My Childrens' Stories
If you have followed me long either here or on Facebook, you know that I'm not shy about sharing details about our family. I've shared many details about infertility, adoption, Cystic Fibrosis, Down syndrome and my husband Elias' double lung transplant journey. Sharing tends to be therapeutic for me. It makes me feel like I'm educating others and raising awareness, hopefully resulting in more people being more understanding and sensitive to a variety of situations.
You may have noticed however that there is a topic that I don't share about and that is why my children were placed for adoption.
I learned early on from an open adoption Facebook group that I am part of that, as adoptive parents, our childrens' adoption stories are not ours to share. It's easy to forget when they are babies that our children will one day grow into older children, teenagers and adults that may not want their story shared with all that know them as well as those who don't, but were friends with their mom on Facebook.
I get asked somewhat frequently why my twins' birthmother "gave them up" (sidenote: we used the word "placed" instead of "gave up" because she made a plan for adoption, chose us to be the adoptive parents and then lovingly and physically placed those babies into our arms and family). Some adoptive parents strongly feel that this is none of anyone else's business and will say so. I do however understand why one would wonder why a person would place their child(ren) for adoption.
If you aren't part of the adoption world, you wouldn't be familiar with all of the various reasons that women and couples choose adoption for their child and for many it's really hard to fathom being in a position where one has to make that decision. I am usually met with assumptions that she couldn't handle two babies, or that being raised in our family was somehow significantly better than what their life would have been like with her. I'm sure some wonder if it was because of Asher having Down syndrome. We've even been told that they are so lucky to have us, when in fact, they would have had a wonderful life full of love and care had they never been placed for adoption, their life would have just been different just as my life is different than yours.
I usually respond to questions about their placement by saying that their birth mom wanted to "give them more". Those are her words, not mine, but they fit nicely. It often feels vague and leads to assumptions, but I struggle with telling people it's just not any of your business so I usually follow up with trying to explain that it isn't my story to tell. It's her story and it's their story, but it's not mine and they can decide if and when they share that story as they get older. Heck, they don't even know all of the details of their own story yet to have a say in it.
So, for now, I don't share. It may feel vague and ambiguous. I promise it's not to make you ask more questions or wonder more, it's just to give them the opportunity to share their own story when/if they are ready.
You may have noticed however that there is a topic that I don't share about and that is why my children were placed for adoption.
I learned early on from an open adoption Facebook group that I am part of that, as adoptive parents, our childrens' adoption stories are not ours to share. It's easy to forget when they are babies that our children will one day grow into older children, teenagers and adults that may not want their story shared with all that know them as well as those who don't, but were friends with their mom on Facebook.
I get asked somewhat frequently why my twins' birthmother "gave them up" (sidenote: we used the word "placed" instead of "gave up" because she made a plan for adoption, chose us to be the adoptive parents and then lovingly and physically placed those babies into our arms and family). Some adoptive parents strongly feel that this is none of anyone else's business and will say so. I do however understand why one would wonder why a person would place their child(ren) for adoption.
If you aren't part of the adoption world, you wouldn't be familiar with all of the various reasons that women and couples choose adoption for their child and for many it's really hard to fathom being in a position where one has to make that decision. I am usually met with assumptions that she couldn't handle two babies, or that being raised in our family was somehow significantly better than what their life would have been like with her. I'm sure some wonder if it was because of Asher having Down syndrome. We've even been told that they are so lucky to have us, when in fact, they would have had a wonderful life full of love and care had they never been placed for adoption, their life would have just been different just as my life is different than yours.
I usually respond to questions about their placement by saying that their birth mom wanted to "give them more". Those are her words, not mine, but they fit nicely. It often feels vague and leads to assumptions, but I struggle with telling people it's just not any of your business so I usually follow up with trying to explain that it isn't my story to tell. It's her story and it's their story, but it's not mine and they can decide if and when they share that story as they get older. Heck, they don't even know all of the details of their own story yet to have a say in it.
So, for now, I don't share. It may feel vague and ambiguous. I promise it's not to make you ask more questions or wonder more, it's just to give them the opportunity to share their own story when/if they are ready.
Friday, March 9, 2018
I'm Glad I Didn't Know
I've said it before, but I'll say it again. Sometimes being part of the CF community is hard. When Elias and I were dating and when we first got married, we didn't really know anyone else with CF. Facebook groups weren't a thing as far as I know, at least they weren't popular if they existed at all and honestly his health was not in a place where either of us felt like we needed that kind of support.
The longer we were married, the more various things came up that others didn't quite understand. I wanted to connect with CF wives that were on the same infertility journey we were on. Then as his illness progress, I wanted to talk about what we were going through and ask questions to those who had been there or at least understood where we were coming from.
Thankfully, I found another CF wife through a CF FB group and I have since connected with several groups for spouses of CF patients or lung transplant patients. In these groups we have some light hearted conversations, but we also talk about some really tough things.
Things I'm glad I didn't know were in my future when we were dating, engaged or newly married.
Maybe that sounds selfish or naive and more than likely I would have just thought that that would never happen to us because we were both convinced that he would have his original lungs until he was in his 60's or 70's because that is what he was told growing up. Now however, I see things through different eyes. I see couples who are young and engaged and just starting out on this CF journey together. Many of them with spouses who are still quite healthy and hopefully will be for a long time, especially with some new promising drugs that have come out. I see these couples I think that I am so glad that I didn't know what was ahead and that I didn't always have that in the back of my mind or hanging over my head.
Had I known what I know now, there are definitely things we would have done differently that may have preserved his health longer, however I would have also lived with far more fear and uncertainty. Today I read stories of lung transplant recipients that are well over 20 years out from transplant and doing great which gives me great hope. Then I read stories of those who never even make it to 5 years and my mind begins to wonder where Elias will fall on that spectrum. I think of when I finish my first step in school in 2 years and what we can do after that, but then in the same thought I wonder where his health will be.
We are not supposed to live in fear and for the most part, I don't anymore. I can't however turn of the part of my brain that knows how quickly things can change.
Facebook groups are amazing for support and I have built some incredible relationships with women in these groups. I am so thankful they exist, but they are also a double edged sword and sometimes they can take away our ability to live a life of naivety and blind hope/faith, appreciating the present and not worrying so much about the future.
I'm glad I have them, but I'm also glad I didn't know.
The longer we were married, the more various things came up that others didn't quite understand. I wanted to connect with CF wives that were on the same infertility journey we were on. Then as his illness progress, I wanted to talk about what we were going through and ask questions to those who had been there or at least understood where we were coming from.
Thankfully, I found another CF wife through a CF FB group and I have since connected with several groups for spouses of CF patients or lung transplant patients. In these groups we have some light hearted conversations, but we also talk about some really tough things.
Things I'm glad I didn't know were in my future when we were dating, engaged or newly married.
Maybe that sounds selfish or naive and more than likely I would have just thought that that would never happen to us because we were both convinced that he would have his original lungs until he was in his 60's or 70's because that is what he was told growing up. Now however, I see things through different eyes. I see couples who are young and engaged and just starting out on this CF journey together. Many of them with spouses who are still quite healthy and hopefully will be for a long time, especially with some new promising drugs that have come out. I see these couples I think that I am so glad that I didn't know what was ahead and that I didn't always have that in the back of my mind or hanging over my head.
Had I known what I know now, there are definitely things we would have done differently that may have preserved his health longer, however I would have also lived with far more fear and uncertainty. Today I read stories of lung transplant recipients that are well over 20 years out from transplant and doing great which gives me great hope. Then I read stories of those who never even make it to 5 years and my mind begins to wonder where Elias will fall on that spectrum. I think of when I finish my first step in school in 2 years and what we can do after that, but then in the same thought I wonder where his health will be.
We are not supposed to live in fear and for the most part, I don't anymore. I can't however turn of the part of my brain that knows how quickly things can change.
Facebook groups are amazing for support and I have built some incredible relationships with women in these groups. I am so thankful they exist, but they are also a double edged sword and sometimes they can take away our ability to live a life of naivety and blind hope/faith, appreciating the present and not worrying so much about the future.
I'm glad I have them, but I'm also glad I didn't know.
Thursday, December 14, 2017
It's About More Than Just Physical Health
As a doula, one of the things that I was taught is that giving birth is about more than just "healthy mom, healthy baby". Of course every parent is happy that their baby is healthy and that the mom is healthy physically, but typically the saying "healthy mom, healthy baby" disregards the feeling and emotions of a mom who may be struggling with a birth that did not go the way that she had desired. Her birth may have been traumatic physically or emotionally. She may have wanted one birth, such as an unmedicated birth and ended up needing a cesarean and she may be struggling with that mentally and emotionally. Yet, she may feel as though she can't bring it up because she and her baby are physically healthy and she is told that that is what really matters.
I see this a lot in the lung transplant community as well. Someone posts something in a Facebook group that they are struggling with. It might be medication side effects, fears of rejection and/or infection, difficult recovery, depression, anxiety, etc. and inevitably, there will be people who comment "yes I struggle with that, but I can breath!". I think that every person in lung transplant groups value the gift of breath. Those in these groups are either waiting for lungs, have received lungs or have cared for someone in end-stage lung disease and through the transplant process.
As Elias got sicker and every breath became more difficult, I used to pause as I walked by him sleeping on the couch to make sure that he was still breathing. I saw his pain and his struggle and I hated the fact that even if he was ready to die, if his body wasn't ready, then his suffering would continue.
On the other side of transplant, I was initially angry that he needed new lungs at all. The statistics haunted me and I felt like so much time had been stolen from us and our future. Then came the long recovery, the change in life plans to ensure that I could care for our family no matter what his future held, the psychological scars, and the medication side effects such as hand tremors, horrible memory, nerve pain in his feet, sweating when eating and more.
I posted once about feeling as though the statistics were this cloud that kind of hung over my head, impacting so many of our life decisions and some people were supportive, but others of course were not so supportive, because well, at least he can breathe.
When people voice their struggles, they are oftentimes treated as though being thankful for the gift of breath and lungs means that they can't also acknowledge the difficult parts of transplant. As if those two things can't co-exist or at the very least, being able to breath should mean that the hard parts are insignificant.
Because of his donor, Elias and I have been given almost an entire extra year together. He has been given the opportunity to spend more time with our twins than ever before and to develop relationships with them that he didn't previously have. We can do things as a family, and this year he will not only be home for Christmas, but he will remember it, or at least he will be fully conscious (he still has a horrible memory ;) ). He CAN breathe and that is something we are incredibly grateful for and something we will always be grateful for. At the same time, we acknowledge the hard things that we have been through and the things that continue to be hard. Overall life has continued to get easier and some medication side effects have lessened. I have hope for the future that isn't always overshadowed by fear anymore. At the same time, we continue to discuss big future plans with Elias' unpredictable future in mind so that we can prepare for that.
Yes, being physically healthy is a gift and is important. Being able to breath is something that one shouldn't take for granted. However, that doesn't mean that we should dismiss one's struggles, fears and emotional health because those things are important too.
I see this a lot in the lung transplant community as well. Someone posts something in a Facebook group that they are struggling with. It might be medication side effects, fears of rejection and/or infection, difficult recovery, depression, anxiety, etc. and inevitably, there will be people who comment "yes I struggle with that, but I can breath!". I think that every person in lung transplant groups value the gift of breath. Those in these groups are either waiting for lungs, have received lungs or have cared for someone in end-stage lung disease and through the transplant process.
As Elias got sicker and every breath became more difficult, I used to pause as I walked by him sleeping on the couch to make sure that he was still breathing. I saw his pain and his struggle and I hated the fact that even if he was ready to die, if his body wasn't ready, then his suffering would continue.
On the other side of transplant, I was initially angry that he needed new lungs at all. The statistics haunted me and I felt like so much time had been stolen from us and our future. Then came the long recovery, the change in life plans to ensure that I could care for our family no matter what his future held, the psychological scars, and the medication side effects such as hand tremors, horrible memory, nerve pain in his feet, sweating when eating and more.
I posted once about feeling as though the statistics were this cloud that kind of hung over my head, impacting so many of our life decisions and some people were supportive, but others of course were not so supportive, because well, at least he can breathe.
When people voice their struggles, they are oftentimes treated as though being thankful for the gift of breath and lungs means that they can't also acknowledge the difficult parts of transplant. As if those two things can't co-exist or at the very least, being able to breath should mean that the hard parts are insignificant.
Because of his donor, Elias and I have been given almost an entire extra year together. He has been given the opportunity to spend more time with our twins than ever before and to develop relationships with them that he didn't previously have. We can do things as a family, and this year he will not only be home for Christmas, but he will remember it, or at least he will be fully conscious (he still has a horrible memory ;) ). He CAN breathe and that is something we are incredibly grateful for and something we will always be grateful for. At the same time, we acknowledge the hard things that we have been through and the things that continue to be hard. Overall life has continued to get easier and some medication side effects have lessened. I have hope for the future that isn't always overshadowed by fear anymore. At the same time, we continue to discuss big future plans with Elias' unpredictable future in mind so that we can prepare for that.
Yes, being physically healthy is a gift and is important. Being able to breath is something that one shouldn't take for granted. However, that doesn't mean that we should dismiss one's struggles, fears and emotional health because those things are important too.
Wednesday, October 11, 2017
One year since transplant referral
A year ago in October Elias was referred for transplant. I remember that part of that brought us peace and clarity because we had been talking about transplant and if it was time, but we didn't know what his doctor was thinking. It was good to be on the same page and have a plan, but it also signified something else. It was the moment where our focus changed from him getting better, to knowing that he wasn't going to get better. From that day forward the focus became on keeping him as healthy as possible for as long as possible and to get him listed for transplant as he would continue to deteriorate, coming closer to death than I could have ever imagined.
Tears stream down my face as I write this and remember. We had no clue what the next several months would look like. I am still astounded by how quickly things moved and his disease progressed after that.
One of his clinic nurses told us that normally, testing took about 6 months for one to be approved for transplant, thankfully his transplant clinic did a lot of that testing on site during his three day evaluation. We all knew he may not have 6 more months.
The following month he was evaluated and then his health took a sharp decline in December. He said his goodbyes, I felt so cruel keeping him alive. Telling him to wait just two more weeks until his insurance changed. Two weeks felt like a lifetime for both of us and I wasn't sure he was going to make it. I will never forget the day he told me that he was ready to die, that he couldn't do it anymore.
But he did make it and his new lungs came in the nick of time.
I would have never imagined a year ago that I would now be sitting here, and he would already be 9 months post transplant. I would never have imagined that he would have gotten sick so quickly. Looking back those months felt like an eternity with my daily fight with the insurance company to get him coverage that would allow for him to be listed. Yet at the same time, they passed all too quickly because I knew he needed more time. Losing two week to communication breakdowns at his transplant clinic felt devastating.
I often say, and you have likely read it before, that life is not what I imagined it would be post transplant, but it is far better than it was last year and for that I am eternally grateful to his donor, her family and to God for his lungs that came just in time.
Tears stream down my face as I write this and remember. We had no clue what the next several months would look like. I am still astounded by how quickly things moved and his disease progressed after that.
One of his clinic nurses told us that normally, testing took about 6 months for one to be approved for transplant, thankfully his transplant clinic did a lot of that testing on site during his three day evaluation. We all knew he may not have 6 more months.
The following month he was evaluated and then his health took a sharp decline in December. He said his goodbyes, I felt so cruel keeping him alive. Telling him to wait just two more weeks until his insurance changed. Two weeks felt like a lifetime for both of us and I wasn't sure he was going to make it. I will never forget the day he told me that he was ready to die, that he couldn't do it anymore.
But he did make it and his new lungs came in the nick of time.
I would have never imagined a year ago that I would now be sitting here, and he would already be 9 months post transplant. I would never have imagined that he would have gotten sick so quickly. Looking back those months felt like an eternity with my daily fight with the insurance company to get him coverage that would allow for him to be listed. Yet at the same time, they passed all too quickly because I knew he needed more time. Losing two week to communication breakdowns at his transplant clinic felt devastating.
I often say, and you have likely read it before, that life is not what I imagined it would be post transplant, but it is far better than it was last year and for that I am eternally grateful to his donor, her family and to God for his lungs that came just in time.
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