As I wake up and think about the significance of today, which happens to be Mother's Day, a weird feeling overcomes me. I am happy because I got to celebrate Mother's Day with my Mom, out shopping and just hanging out. I will be celebrating Mother's Day with my Mother In Law today who is in town from Minnesota, and that makes me happy....but then, a sadness overcomes me as I remember or recognize that I now have someone else's Mom to consider. My donor's Mother. I don't know anything about this woman, or if she and her son had a relationship, but I do know that if she were involved in her son's life, today might be especially hard for her. Hard because he son's life was cut way too short, and I know she would probably have loved to celebrate even one more Mother's Day's with her son.
To my donor's mother, I am so very sorry for your loss. I am sure you miss your son everyday, but especially on days like today. I'll have you know that despite us knowing absolutely nothing about each other, you and your son hold a special spot in my heart that no one else can occupy. I will try my best to honor you and your son and cherish these new lungs he so graciously gave me upon his passing. I continue to wake up everyday and I have to pinch myself that it's real, I have had a transplant. I quickly remember as I don't have to rush to get a breathing treatment in just to start my day. I don't have the hum, or rather the, loud roar, of "R2D2" as my husband calls it, of the bedside oxygen concentrator all night. I am not waking up with "oxygen lines" on my face! I've gained so many hours back during my day from not needing breathing treatments every 2-4 hours.
So, as you sit down today with your Mom's, realize how special it really is to BE with your Mom on day's like today. Also realize there are many Mom's out there who might be hurting on this Mother's Day, because they've lost a child. And there are plenty of others who wished they could be Mom's but for one reason or another they can't. Mom's come in all shapes, forms, sizes and we want to recognize and appreciate each and every one of you.
I'd like to wish my Mom and my Mother in Law, a Happy Mother's Day. I was lucky enough to already have an amazing Mom, and then I gained another wonderful mother, upon marrying into Bob's family. And finally, I want to wish my donor's mother a happy Mother's Day. While your son may not be there with you, he is living on through me and I am wishing you the most comforting Mother's Day wishes I can. I hope one day to meet you, and I hope you can hear/see your son living on through me as I try to make him proud!! Happy Mother's Day!!!
Sunday, May 14, 2017
Saturday, April 29, 2017
4 weeks of a new life
As I wake up today, I immediately think of a couple of things. First, what a miracle today is. Today marks 4 weeks exactly since I had my double lung transplant. This time 4 weeks ago, I was under the care of many hospital staff, on an operating table with my chest cracked wide open and I was getting my second chance at life "installed". 4 weeks ago, my life was in others hands, and yet another life had been lost too early. I think of my donor, and his family. I think of the grief and loss they must feel knowing that today marks 4 weeks since their loved one passed. In that moment, I take the deepest breath I can take, and I am reminded to be thankful, but that I am still healing, still very much in recovery mode. I feel a slight pain in my chest as my chest cavity expands, but there are no wheezes, no crackles, I am not short of breath, I do not need a breathing treatment and I CAN BREATHE!!!!!!
Yesterday I went to the grocery store for the first time since before transplant (about 8 weeks), and what a treat!! It's the little things in life these days ;) Not only was I able to get out and walk about, but I did so WITHOUT oxygen! It's been about 2 weeks and I've not needed oxygen at all, which is a HUGE deal. I had become known as "that girl with the cart/oxygen" around my apartment building and even at the grocery store they knew me, b/c anywhere I went, my trusty portable oxygen came with too. So many people have commented that it must feel good to not have to lug that thing around, and it does!!
For the most part, recovery has remained good at a slow and steady pace. Each day I feel a little better and a little stronger. Sure I have had a few minor bumps. Lately, I have been waking up with terrible headaches, my sleep has been broken down into about 3hr chunks, I need a nap during the day, I've had bouts of nausea and almost vomited the other day and I am peeing like madwoman...but all of this is NOTHING to deal with when you look at the big picture. These are just minor bumps that come with the process. They always tell you when you have transplant that you trade "one major" problem (not breathing well for me), for a "whole lot" of other problems. I can say, it is a big deal to be able to breathe and so far nothing has made me doubt or question my need and decision to go through with this transplant, in fact each day I wake up and I am not having to take a breathing treatment first thing, I say thanks to my donor. Last night, I am convinced my donor wanted me to sleep a full night for such a momentous day today. I still woke up about every 3 hrs (which is better than it had been the other night at every hour), needing to use the restroom, but I was quickly able to go back to bed and back to sleep, so I felt pretty good upon getting up the day today.
I am not quite sure how we will celebrate today, but I have my Mom and hubby here with me to do something special. Thanks to everyone who has been following along in our journey and continued to encourage us all. Your support means the world to us, as we could not do this without your help. Continued thoughts and prayers would be appreciated as I continue to recover and need protection against germs, I need to build up strength and I need to put on a few pounds after I lost about 10-15lbs being in the hospital. Please also ask for patience and guidance for my husband and parents as they are my primary caretakers and this is no easy task .... yes, I am very stubborn. :)
Much Love,
Rebs
Yesterday I went to the grocery store for the first time since before transplant (about 8 weeks), and what a treat!! It's the little things in life these days ;) Not only was I able to get out and walk about, but I did so WITHOUT oxygen! It's been about 2 weeks and I've not needed oxygen at all, which is a HUGE deal. I had become known as "that girl with the cart/oxygen" around my apartment building and even at the grocery store they knew me, b/c anywhere I went, my trusty portable oxygen came with too. So many people have commented that it must feel good to not have to lug that thing around, and it does!!
For the most part, recovery has remained good at a slow and steady pace. Each day I feel a little better and a little stronger. Sure I have had a few minor bumps. Lately, I have been waking up with terrible headaches, my sleep has been broken down into about 3hr chunks, I need a nap during the day, I've had bouts of nausea and almost vomited the other day and I am peeing like madwoman...but all of this is NOTHING to deal with when you look at the big picture. These are just minor bumps that come with the process. They always tell you when you have transplant that you trade "one major" problem (not breathing well for me), for a "whole lot" of other problems. I can say, it is a big deal to be able to breathe and so far nothing has made me doubt or question my need and decision to go through with this transplant, in fact each day I wake up and I am not having to take a breathing treatment first thing, I say thanks to my donor. Last night, I am convinced my donor wanted me to sleep a full night for such a momentous day today. I still woke up about every 3 hrs (which is better than it had been the other night at every hour), needing to use the restroom, but I was quickly able to go back to bed and back to sleep, so I felt pretty good upon getting up the day today.
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| Wish I could take credit for this photo but I can't. What a cool shot though of a "lung tree"! |
Much Love,
Rebs
Sunday, February 19, 2017
My Sweet Barbie Girl.
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| Coffee dates with her were always so fun |
As I write this, tears well up in my eyes, and my heart feels like it's being split in two. Today was a day I knew was coming, and I tried to prepare for, but it stung and still stings. Today, my sweet friend Barbie, my PCD pal and transplant buddy here in Houston, took her last breath and passed. Surrounded by family and friends, she knew she was loved and she passed in peace without any pain. We told her how much we loved her, how strong of a fight she put up, and that it was okay to fall asleep. Many tears were shed with relationships from all different walks of life in the room with her. When I arrived this morning, her beautiful blue eyes opened wide, and she knew I, along with everyone else in the room were with her, comforting her on her last few hours on Earth.
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| Right after transplant |
Barbie and I had a very special bond. One that I don't get to share with many people. We met about 2 years ago, but it felt like we have known each other a lifetime. She and I knew what it was like to go through each day struggling to breathe, what it feels like to be sick, everyday of your life. Barbie waited 9 months for her transplant, and tomorrow would have been her 10 month anniversary with her new lungs. I wish so much that she could have experienced more time with her precious new lungs. At one point after transplant, she had over 100% lung function. Thanks to her donor, and her donor's family, she DID experience a life, free of PCD-ridden lungs. She enjoyed life without oxygen, nebulizers and discomfort from poor lungs, and now she is ultimately free of any pain and suffering. While I am comforted by knowing these things, it doesn't take away the hurt of losing a close friend, or the fear of what might happen on my own transplant journey. |
| 5 months post transplant |
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| Meeting Mama Fish |
Last night, the most amazing thing happened. Bob and I were helping to take care of Barbie and Dan's (her husband) dogs and cat, so that he could stay at the hospital with her. It's about a 45 minute drive from the hospital, and on the way back home, I look out my window, and right next to us what do I see??? A bright pink, Volkswagen beetle, with the words "Barbie" written in white all over it!!! I literally could not believe my eyes. It was a "Barbie car", and I've never, ever seen anything like that on the road. Of all times, last night, it's right next to us. I took it as a sign that Barbie would soon be free, out being her spunky self, enjoying life and quite possibly enjoying her own Barbie car.
I will miss you sweet friend, you were such a blessing to me and Bob. We have a forever friend in you and Dan, and I know you will be our guardian angel, looking down on us as we move through life, and our own transplant ups and downs. Rest in peace my girl, I love you...
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| Breathe Easy my sweet Barbie, you're now free to swim with the dolphins as you wished. |
Sunday, January 8, 2017
Lady in Red
Last night was an unforgettable night...for a couple reasons. First and foremost, it was "date night" and we attended a show downtown called "Cirque Goes to the Movies". This spin off of the traditional Cirque de la Symphonie, showcased some amazing aerial acrobats, jugglers, contortionists and strongmen choreographing their number to some of film's most iconic numbers, such as Titanic & Star Wars, with music performed by the Houston Symphony. What an brilliant combination, the Symphony and these crazy talented, strong, and athletic artists doing things unimaginable to most. It was BY FAR one of the best shows, I've ever seen in my life.
These "outings" (while a blast and still completely worth it) do take a lot out of me. It takes me quite a while to get "fancied" up these days, and last night, I was the "Lady in Red". I bought a new red dress, donned on some leopard print heels, painted my lips a shade of red, and best part of it all, I still had some reserve energy to go do dinner and the show. Our seats were perfect, located very close to the stage, but smack dab in the middle, which means ... bathroom breaks weren't going to be easily concealable. So at intermission, I decided I should go to the restroom. The venue was quite large, and the restrooms were a hike for the average person. There were however, some handicap/disabled restrooms much closer to our seats, so my husband suggested I use those. He knows me often better than myself, so I hesitantly listened and agreed. I say hesitantly, because, I didn't have my oxygen with me. It can be rather cumbersome to navigate with, and we were using cabs for our travel needs, so it was door to door service. I figured for the night, I would be okay, so as long as I wasn't needing to walk too far. Plus, when able...a girl needs a night out, dressed up, without the "accessory" of oxygen!
Here comes the other unforgettable part of the evening, one that for some reason or another, I can't seem to shake. After making the (shorter) hike to the handicap restrooms, I was leaning against the wall, trying to catch my breath. I am joined in line by a couple older ladies, when one approaches me and says, "this is the disabled restrooms, young lady". I knew what she was thinking right then and there. She took one look at me, the "Lady in Red", and saw no evident signs of me fitting the label of being "disabled". I didn't have my oxygen on, I wasn't in a wheelchair, I had all my limbs, and to her, I was simply abusing the "disabled code of honor". I turned to her and stated that I knew it was the disabled restrooms and continued to wait, trying to catch my breath, and keep my emotions in check. She didn't stop..."Are you waiting for someone", she asked with a slight bitterness in her voice. And then, I caved. I firmly looked her in the eye and I said, "No, I am not waiting for someone, I am waiting to use them myself, because" ... and before I could even EXPLAIN, she rolled her eyes and gave me a look of utter disgust. I continued ... "I am waiting to use them myself ma'am, because I can't breathe, and have terrible lungs. I am on the lung transplant list, and simply walking up a flight of stairs can make me feel like passing out. So, I know I don't LOOK the part, but inside I am very sick". Caught off guard, she replied, "Oh, well then, that is fine (giving me her approval that my excuse warranted the need for the disabled bathroom)....it's just that, you look so cute, Lady in Red". Before she could see my eyes welt up with tears, a restroom became available and I snuck inside so that she didn't see my vulnerable side, my hurt, my embarrassment, the emotional pain she had just caused.
It's the sad reality, but this happens much more often than I'd like to admit. I have to explain, WHY I am using the handicap spot, or bathroom if I don't have my oxygen on. Last night was no different, it was just that this woman took it upon herself to say something directly to me. Most of the time, I get disapproving looks if I happen to utilize the handicap bathroom, or parking spot ... without my oxygen. On rare occasions, I might need to just run in the grocery store for a quick item, and I won't take my oxygen in with me. What people see, is a healthy young woman who appears to be able to walk fine, taking up a handicap spot. Yes, I have my sticker up, but to them, I could be abusing it, using someone else's perhaps? What they see on the outside, is far from the truth. They have no idea how much energy it takes for me to just make it to the store. They don't see the hours of breathing treatments, the pain throughout my body, the struggle to do everyday things. They don't see the sleepless night, the endless coughing, the blood coughed up coming from my lungs. They don't see or feel the suffocation, the muscle spasms, the shooting pains in my ribs or my back. No, what they see is a "Pretty Lady in Red" who MUST have no regard for what it means to be handicap.
Point of this blog? The point is, lets not be so quick to judge others. Let's not assume the worst in people. Do I wish I didn't need to utilize those handicap bathrooms and parking spots, you bet, and I often don't if I don't have my oxygen, purely for the reason of fear of getting disapproving looks. It bothers me, probably more than I should let it. I can't even describe the humility I feel when I see others look at me and judge me, if I don't have my oxygen on and I need to use that blue handicap sticker. But boy, how that changes when I have my oxygen. Then, people look at me and I can see the curiosity in their eyes, along with their feeling sorry for me. People are often very nice and accommodating when I have my trusted oxygen slapped on, but without it, I am not validated. I must be "THAT" girl, the one who takes shortcuts in life and doesn't have any regard for others .... when in reality, that couldn't be further from the truth. Do I blame the lady for questioning me, no of course not. I don't LOOK sick on the surface, so why wouldn't she question me? But there certainly is a time, a place, and a better way to go about things. I am sure she's seen people abuse the handicap accessibility, I have seen it myself. I just wish she wasn't so quick to judge, especially on a night when I wanted go out without my oxygen, without the heavy reminder that I am very sick.
So, it's a new year ... people often wonder what they can do to better themselves. Here's a resolution for you ... don't be so quick to judge others. We often have no idea what others are going through. Let's give people the benefit of the doubt, and NOT assume the worst in people. Let's start there, and I bet you'll be surprised in what you find, when you open your mind and your heart to hope for the better in our neighbors, our family and friends and complete strangers. People are often very good at hiding their vulnerabilities from the world, and people sometimes, just don't want the constant reminder that they are sick.
These "outings" (while a blast and still completely worth it) do take a lot out of me. It takes me quite a while to get "fancied" up these days, and last night, I was the "Lady in Red". I bought a new red dress, donned on some leopard print heels, painted my lips a shade of red, and best part of it all, I still had some reserve energy to go do dinner and the show. Our seats were perfect, located very close to the stage, but smack dab in the middle, which means ... bathroom breaks weren't going to be easily concealable. So at intermission, I decided I should go to the restroom. The venue was quite large, and the restrooms were a hike for the average person. There were however, some handicap/disabled restrooms much closer to our seats, so my husband suggested I use those. He knows me often better than myself, so I hesitantly listened and agreed. I say hesitantly, because, I didn't have my oxygen with me. It can be rather cumbersome to navigate with, and we were using cabs for our travel needs, so it was door to door service. I figured for the night, I would be okay, so as long as I wasn't needing to walk too far. Plus, when able...a girl needs a night out, dressed up, without the "accessory" of oxygen!
Here comes the other unforgettable part of the evening, one that for some reason or another, I can't seem to shake. After making the (shorter) hike to the handicap restrooms, I was leaning against the wall, trying to catch my breath. I am joined in line by a couple older ladies, when one approaches me and says, "this is the disabled restrooms, young lady". I knew what she was thinking right then and there. She took one look at me, the "Lady in Red", and saw no evident signs of me fitting the label of being "disabled". I didn't have my oxygen on, I wasn't in a wheelchair, I had all my limbs, and to her, I was simply abusing the "disabled code of honor". I turned to her and stated that I knew it was the disabled restrooms and continued to wait, trying to catch my breath, and keep my emotions in check. She didn't stop..."Are you waiting for someone", she asked with a slight bitterness in her voice. And then, I caved. I firmly looked her in the eye and I said, "No, I am not waiting for someone, I am waiting to use them myself, because" ... and before I could even EXPLAIN, she rolled her eyes and gave me a look of utter disgust. I continued ... "I am waiting to use them myself ma'am, because I can't breathe, and have terrible lungs. I am on the lung transplant list, and simply walking up a flight of stairs can make me feel like passing out. So, I know I don't LOOK the part, but inside I am very sick". Caught off guard, she replied, "Oh, well then, that is fine (giving me her approval that my excuse warranted the need for the disabled bathroom)....it's just that, you look so cute, Lady in Red". Before she could see my eyes welt up with tears, a restroom became available and I snuck inside so that she didn't see my vulnerable side, my hurt, my embarrassment, the emotional pain she had just caused.
It's the sad reality, but this happens much more often than I'd like to admit. I have to explain, WHY I am using the handicap spot, or bathroom if I don't have my oxygen on. Last night was no different, it was just that this woman took it upon herself to say something directly to me. Most of the time, I get disapproving looks if I happen to utilize the handicap bathroom, or parking spot ... without my oxygen. On rare occasions, I might need to just run in the grocery store for a quick item, and I won't take my oxygen in with me. What people see, is a healthy young woman who appears to be able to walk fine, taking up a handicap spot. Yes, I have my sticker up, but to them, I could be abusing it, using someone else's perhaps? What they see on the outside, is far from the truth. They have no idea how much energy it takes for me to just make it to the store. They don't see the hours of breathing treatments, the pain throughout my body, the struggle to do everyday things. They don't see the sleepless night, the endless coughing, the blood coughed up coming from my lungs. They don't see or feel the suffocation, the muscle spasms, the shooting pains in my ribs or my back. No, what they see is a "Pretty Lady in Red" who MUST have no regard for what it means to be handicap.
Point of this blog? The point is, lets not be so quick to judge others. Let's not assume the worst in people. Do I wish I didn't need to utilize those handicap bathrooms and parking spots, you bet, and I often don't if I don't have my oxygen, purely for the reason of fear of getting disapproving looks. It bothers me, probably more than I should let it. I can't even describe the humility I feel when I see others look at me and judge me, if I don't have my oxygen on and I need to use that blue handicap sticker. But boy, how that changes when I have my oxygen. Then, people look at me and I can see the curiosity in their eyes, along with their feeling sorry for me. People are often very nice and accommodating when I have my trusted oxygen slapped on, but without it, I am not validated. I must be "THAT" girl, the one who takes shortcuts in life and doesn't have any regard for others .... when in reality, that couldn't be further from the truth. Do I blame the lady for questioning me, no of course not. I don't LOOK sick on the surface, so why wouldn't she question me? But there certainly is a time, a place, and a better way to go about things. I am sure she's seen people abuse the handicap accessibility, I have seen it myself. I just wish she wasn't so quick to judge, especially on a night when I wanted go out without my oxygen, without the heavy reminder that I am very sick.
So, it's a new year ... people often wonder what they can do to better themselves. Here's a resolution for you ... don't be so quick to judge others. We often have no idea what others are going through. Let's give people the benefit of the doubt, and NOT assume the worst in people. Let's start there, and I bet you'll be surprised in what you find, when you open your mind and your heart to hope for the better in our neighbors, our family and friends and complete strangers. People are often very good at hiding their vulnerabilities from the world, and people sometimes, just don't want the constant reminder that they are sick.
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