Still Smiling
Day 4 and 5 - Post Transplant
Let me start by saying, medically, Mark is doing great. He continues to outpace the typical heart transplant recipient. If the "normal" patient walks 10 steps, Mark wants to walk 50. [He's just a wee bit competitive. ;-) ] He walked on Day 2 post chest closure, yesterday he walked down the entire hall and back without the stand-up walker, and today he WALKED from ICU to his new room in the Step-down Unit. By all accounts he is well on his way to recovery. We are grateful and so proud of his hard work and drive to get better.
Two of the three chest tubes are out and he is slowly losing medication after medication. The supplemental oxygen was even removed tonight. All of this is welcome news! Yet, the past two days have been extremely tough. They have been tough physically and emotionally. I have cried more than I have in a very long time. I am exhausted.
Several of Mark's medications are causing adverse reactions. The medical team is working on a combination of meds to address the pain. Pain management after open-heart surgery is no joke. The steroids and anti-rejection meds are causing him to talk absolutely non-stop—which at first, was great to see, as we were so glad to hear his voice again. After 2 long days and nights, it is proving to be exhausting for all involved. Two different times medication combinations have caused him to be extremely disoriented, agitated, confused, forgetful and in general not himself. Please pray for him as it is really tough on him—and us. He knows enough to know things are off, sometimes is coherent and other times is completely not Mark.
Beverly, Joe, Cari and I have spent much time trying to figure out next steps for housing, touring some great options and making a definite list of absolute not the right option locations, and taking care of preparations for Mark when he is able to leave the hospital. Life with a new transplant recipient is very different. There's much to learn and many precautions to think through and address. I did not realize that in essence they completely take away their immune system so that the body does not reject the new organ. It makes sense, but something I never really fully appreciated until I find myself here. He will not even be able to eat fresh veggies for 6+ months, and some never again because it is too dangerous. It has been a blessing to have family here with me to help think through decisions and hold me up when I haven't had the strength.
My parents and niece Christa have also had full plates this week taking care of our girls. That's not an easy task on a normal day and certainly not when Mommy has to quickly leave to go be with Daddy who is having a heart transplant. And, for all involved, it has been an emotionally draining week. We are blessed to have them supporting us. There is no way I could make this all work alone.
All in all, I write this to say, we have had really high-highs this week and some low points. We know the road ahead is going to be difficult to navigate. We covet your prayers for Mark's continued positive health; for his medications to do their job without as many side effects; for wisdom for me in how to best support Mark and my girls even though for the most part we will not all be together; for wisdom in decision making for how to manage the costs of living in two households; for managing the significant increase in medication costs; for the well-being of our girls and decisions we are making; for the endurance for our families as they give their all to support us in every way possible...and above all that I can breathe and handle all the stresses being thrown my way.
As I sit here and watch Mark sleep, I am grateful for his life. I am grateful that he chose me to be his wife. I am grateful at the significant blessings that come through tough times. I am grateful we have made it thus far and I am grateful to be on this side of his transplant. We have survived one of the most emotionally taxing weeks imaginable and mostly are still smiling.
Let me start by saying, medically, Mark is doing great. He continues to outpace the typical heart transplant recipient. If the "normal" patient walks 10 steps, Mark wants to walk 50. [He's just a wee bit competitive. ;-) ] He walked on Day 2 post chest closure, yesterday he walked down the entire hall and back without the stand-up walker, and today he WALKED from ICU to his new room in the Step-down Unit. By all accounts he is well on his way to recovery. We are grateful and so proud of his hard work and drive to get better.
Two of the three chest tubes are out and he is slowly losing medication after medication. The supplemental oxygen was even removed tonight. All of this is welcome news! Yet, the past two days have been extremely tough. They have been tough physically and emotionally. I have cried more than I have in a very long time. I am exhausted.
Several of Mark's medications are causing adverse reactions. The medical team is working on a combination of meds to address the pain. Pain management after open-heart surgery is no joke. The steroids and anti-rejection meds are causing him to talk absolutely non-stop—which at first, was great to see, as we were so glad to hear his voice again. After 2 long days and nights, it is proving to be exhausting for all involved. Two different times medication combinations have caused him to be extremely disoriented, agitated, confused, forgetful and in general not himself. Please pray for him as it is really tough on him—and us. He knows enough to know things are off, sometimes is coherent and other times is completely not Mark.
Beverly, Joe, Cari and I have spent much time trying to figure out next steps for housing, touring some great options and making a definite list of absolute not the right option locations, and taking care of preparations for Mark when he is able to leave the hospital. Life with a new transplant recipient is very different. There's much to learn and many precautions to think through and address. I did not realize that in essence they completely take away their immune system so that the body does not reject the new organ. It makes sense, but something I never really fully appreciated until I find myself here. He will not even be able to eat fresh veggies for 6+ months, and some never again because it is too dangerous. It has been a blessing to have family here with me to help think through decisions and hold me up when I haven't had the strength.
My parents and niece Christa have also had full plates this week taking care of our girls. That's not an easy task on a normal day and certainly not when Mommy has to quickly leave to go be with Daddy who is having a heart transplant. And, for all involved, it has been an emotionally draining week. We are blessed to have them supporting us. There is no way I could make this all work alone.
All in all, I write this to say, we have had really high-highs this week and some low points. We know the road ahead is going to be difficult to navigate. We covet your prayers for Mark's continued positive health; for his medications to do their job without as many side effects; for wisdom for me in how to best support Mark and my girls even though for the most part we will not all be together; for wisdom in decision making for how to manage the costs of living in two households; for managing the significant increase in medication costs; for the well-being of our girls and decisions we are making; for the endurance for our families as they give their all to support us in every way possible...and above all that I can breathe and handle all the stresses being thrown my way.
As I sit here and watch Mark sleep, I am grateful for his life. I am grateful that he chose me to be his wife. I am grateful at the significant blessings that come through tough times. I am grateful we have made it thus far and I am grateful to be on this side of his transplant. We have survived one of the most emotionally taxing weeks imaginable and mostly are still smiling.
Wow! I know you are drained, emotional and physical. Continuing to pray for all the decisions your family has to make. God has brought you this far, and will not leave you now! So glad Mark is physically, doing so good. Love and prayers.
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