I’m not sure I am at a point where I am mentally ready to tackle the rest of my transplant story. I’m going to try and write this blog post. Not for y'all, but I am hoping this will be a therapeutic way for me to process some of it. The journey post-transplant is messy, so bear with me as I go through my hospital stay. My next few blogs will be like this one, bits and pieces, things that stick out, and they won’t necessarily be in order. My days in the hospital blur together, but I still remember how I felt, the big things, and the little things that stuck out. I will share as much as I can remember with y'all so you get a little bit of a first hand view from a transplant patient. No matter the reason you are reading my blog, I just want to thank you for following along my journey. It makes my heart feel all warm and fuzzy when I see how many people have cared enough to read the words I write in this blog.
I can no longer give y’all exact points, times, and conversations. Being in the hospital for a month and a half, the every day stuff runs together. One of the first things I remember is my nurse handing me a cup FULL of pills. I am not joking when I tell you I had at least 16-23 pills (I give such a wide range because I think my brain exaggerated a little bit). I hated mornings and evenings because I had to take all these pills. They kept telling me I had to eat breakfast and dinner, but I couldn’t because the pills filled me up. I felt so full after taking them, I thought I would throw up. (I’m happy to report that as of today I am down to only 10 pills in the morning, 1 in the afternoon, and 9 at night. So I am VERY happy with those lower numbers!)
Then to make my pill journey even more difficult, I suddenly had the inability to swallow, eat or drink without extreme pain in my throat. I am talking I straight up couldn’t do it, because every time something hit my throat, I was in a world of pain. After I didn’t eat for a day, they scheduled an endoscopy and my old liver doctor (the one I loved who just happens to be a female), was the one who did it with my main liver doctor supervising. When I came to they told Kevin and I that she was almost scared to take a biopsy because the tissue was so friable and my throat and stomach were basically a giant ulcer. Our new goal was to try and heal my esophagus and stomach so I could eat and drink and no longer be miserable. That meant a couple more pills and drinking liquid lidocaine (which tasted terrible) every single time I needed to eat, drink, or take my medicine. Thankfully, despite it’s horrible taste, it did the trick and numbed my throat so I was able to get food in me and take my medicine without pain. If I remember correctly it took almost two weeks for my throat to heal to the point I no longer needed the liquid lidocaine.
Another thing I remember vividly in those first few weeks was how frustrated I would get. I was so swollen- everywhere! My toes looked like sausages, my legs were tree trunks, my ankles didn’t exist, and yet again I looked nine months pregnant. My feet were so swollen that they were rounded on the bottom making it difficult to walk around. My mom was the sweetest and braved Walmart to get me some house slippers with the rubber on the bottom so you don’t fall. She even went up a size, and they were so tight it left a ring around my foot. Every single day Dr. D would tell me that I needed to be up and walking as much as possible. He even said “I wish we got rid of the hospital bed during the day so transplant patients would be forced to sit up in a chair or to walk around. It’s not good for y'all to sit all day, it delays progress and healing.” Y’all, I was so thankful for this transplant, but if looks could kill. The last thing I wanted to do was get up and walk. At first getting up to go to the bathroom was too much, and I would get out of breath just doing that. Then I started to attempt laps around the floor. I have never felt weaker than I felt at this point in time. Physically I was weak, mentally I was weak, emotionally I was weak. It took an act of Congress to get myself out of bed and even more so to put my slippers on.
These laps are what almost did me in. They had told me when I walked three laps around the floor that I could go home, but at that point I felt like I’d spend the rest of my life there. It was too much to handle, or that is what it felt like because it required energy, strength, and determination that I didn’t have enough of. Kevin would encourage me to get up and try to walk as far as I could several times a day, and I know I was cranky with him then. I would set a goal in my mind, try to make it, and for the first several days I would fall short. I would have to turn around and go back to my room before I hit my goal, and when I got back I instantly had to sit down in my bed because I couldn’t breathe. My lungs actually ached, and every time I finished walking I didn’t think my lungs could recover and get enough oxygen into my body. It was a scary kind of out of shape ache. I was so out of shape that I felt like I was going to pass out just from the little bit of walking. When the doctors would round in the mornings, there were several days I told them I had walked more times than I did. The thought of failing my doctors was too much on top of everything else I was thinking and feeling. Which in hindsight, lying to them only made me work harder because I felt so bad and wanted to meet the goals I had told them I met. The first time my mom went walking the floor with me, I walked an entire half lap and you would have thought I had won the Boston Marathon. I may have shrugged off your cheering Mama- but it was the BEST feeling to have you and Kevin cheering me on. Then, it got even better. One day my cousin Bailey and her boyfriend Jordan came to see me while my Mama and Kevin were there, then my cousin Natalie came after a wedding. Mama and Kevin were telling them how I had finally reached a whole lap, and they wanted to see me and walk with me. So the six of us took a family walk around the unit. The nurses were laughing, but honestly having that cheering section walk with me made me finally proud of myself and the progress I was making. My Aunt Amer and cousin Sarah Grace joined us about an hour later, and I know we broke every single noise rule on the floor. I was awake the entire afternoon, sitting up, laughing, joking, and eating (because they were sweet enough to sneak me in Chick fil A and some Cheetos). Then my aunt wanted to see me walk a lap. At first I was like no thank you, I have already walked two entire laps today and I am exhausted. But then they kept encouraging me that I could do it, and we would take rest breaks if I needed to in order to make it. So out we went for another family walk, all eight of us, for my third lap of the day.
I have said it a million times since transplant that my family and friends are awesome. So my next blog will be dedicated to them. It’s my chance to brag on them, and let them know that every single thing they did was noticed, appreciated, and above anyone’s expectations of family (because I consider those friends who helped family). So look forward to that blog, along with others like this, and I’m hoping another guest blog or two!
With all my love,
Ali
I can no longer give y’all exact points, times, and conversations. Being in the hospital for a month and a half, the every day stuff runs together. One of the first things I remember is my nurse handing me a cup FULL of pills. I am not joking when I tell you I had at least 16-23 pills (I give such a wide range because I think my brain exaggerated a little bit). I hated mornings and evenings because I had to take all these pills. They kept telling me I had to eat breakfast and dinner, but I couldn’t because the pills filled me up. I felt so full after taking them, I thought I would throw up. (I’m happy to report that as of today I am down to only 10 pills in the morning, 1 in the afternoon, and 9 at night. So I am VERY happy with those lower numbers!)
Then to make my pill journey even more difficult, I suddenly had the inability to swallow, eat or drink without extreme pain in my throat. I am talking I straight up couldn’t do it, because every time something hit my throat, I was in a world of pain. After I didn’t eat for a day, they scheduled an endoscopy and my old liver doctor (the one I loved who just happens to be a female), was the one who did it with my main liver doctor supervising. When I came to they told Kevin and I that she was almost scared to take a biopsy because the tissue was so friable and my throat and stomach were basically a giant ulcer. Our new goal was to try and heal my esophagus and stomach so I could eat and drink and no longer be miserable. That meant a couple more pills and drinking liquid lidocaine (which tasted terrible) every single time I needed to eat, drink, or take my medicine. Thankfully, despite it’s horrible taste, it did the trick and numbed my throat so I was able to get food in me and take my medicine without pain. If I remember correctly it took almost two weeks for my throat to heal to the point I no longer needed the liquid lidocaine.
Another thing I remember vividly in those first few weeks was how frustrated I would get. I was so swollen- everywhere! My toes looked like sausages, my legs were tree trunks, my ankles didn’t exist, and yet again I looked nine months pregnant. My feet were so swollen that they were rounded on the bottom making it difficult to walk around. My mom was the sweetest and braved Walmart to get me some house slippers with the rubber on the bottom so you don’t fall. She even went up a size, and they were so tight it left a ring around my foot. Every single day Dr. D would tell me that I needed to be up and walking as much as possible. He even said “I wish we got rid of the hospital bed during the day so transplant patients would be forced to sit up in a chair or to walk around. It’s not good for y'all to sit all day, it delays progress and healing.” Y’all, I was so thankful for this transplant, but if looks could kill. The last thing I wanted to do was get up and walk. At first getting up to go to the bathroom was too much, and I would get out of breath just doing that. Then I started to attempt laps around the floor. I have never felt weaker than I felt at this point in time. Physically I was weak, mentally I was weak, emotionally I was weak. It took an act of Congress to get myself out of bed and even more so to put my slippers on.
These laps are what almost did me in. They had told me when I walked three laps around the floor that I could go home, but at that point I felt like I’d spend the rest of my life there. It was too much to handle, or that is what it felt like because it required energy, strength, and determination that I didn’t have enough of. Kevin would encourage me to get up and try to walk as far as I could several times a day, and I know I was cranky with him then. I would set a goal in my mind, try to make it, and for the first several days I would fall short. I would have to turn around and go back to my room before I hit my goal, and when I got back I instantly had to sit down in my bed because I couldn’t breathe. My lungs actually ached, and every time I finished walking I didn’t think my lungs could recover and get enough oxygen into my body. It was a scary kind of out of shape ache. I was so out of shape that I felt like I was going to pass out just from the little bit of walking. When the doctors would round in the mornings, there were several days I told them I had walked more times than I did. The thought of failing my doctors was too much on top of everything else I was thinking and feeling. Which in hindsight, lying to them only made me work harder because I felt so bad and wanted to meet the goals I had told them I met. The first time my mom went walking the floor with me, I walked an entire half lap and you would have thought I had won the Boston Marathon. I may have shrugged off your cheering Mama- but it was the BEST feeling to have you and Kevin cheering me on. Then, it got even better. One day my cousin Bailey and her boyfriend Jordan came to see me while my Mama and Kevin were there, then my cousin Natalie came after a wedding. Mama and Kevin were telling them how I had finally reached a whole lap, and they wanted to see me and walk with me. So the six of us took a family walk around the unit. The nurses were laughing, but honestly having that cheering section walk with me made me finally proud of myself and the progress I was making. My Aunt Amer and cousin Sarah Grace joined us about an hour later, and I know we broke every single noise rule on the floor. I was awake the entire afternoon, sitting up, laughing, joking, and eating (because they were sweet enough to sneak me in Chick fil A and some Cheetos). Then my aunt wanted to see me walk a lap. At first I was like no thank you, I have already walked two entire laps today and I am exhausted. But then they kept encouraging me that I could do it, and we would take rest breaks if I needed to in order to make it. So out we went for another family walk, all eight of us, for my third lap of the day.
I have said it a million times since transplant that my family and friends are awesome. So my next blog will be dedicated to them. It’s my chance to brag on them, and let them know that every single thing they did was noticed, appreciated, and above anyone’s expectations of family (because I consider those friends who helped family). So look forward to that blog, along with others like this, and I’m hoping another guest blog or two!
With all my love,
Ali
so proud of you honey!! You are a real hero to so many of us! We are so thankful for your strength and determination to go through all yo have , and to kick it's butt and show everyone what you are made of Baby Girl <3 We love you, Ginny and Steve
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