One of the sweetest questions I get asked these days is, “How can I pray for you?” Thank you so much for all of the many, many prayers. Please keep them coming. This journey will likely be years, not months. It’s more of a marathon than a sprint. It will have lots of ups and downs along the way, and I’ll need all the support I can get.
I am surprised by how much things like little comments on facebook mean when you’re really in a dark place. On the whole, I think I’m doing a good job of keeping my spirits up, but that isn’t to say that there aren’t days that are just, well, crappy. On those days it’s the support of all of you that help to keep me focused on moving forward and trying not to dwell on the losses.
There is a lot going on that could use prayer right now.
Please pray for my family. This is a stressful time for them as well as for me. Not knowing exactly when I’ll be moving and when our plans need to be put into action turns my stomach. I know it isn’t easy on Ryan and Sara and my parents either. We all want a plan. We want to know exactly what has to be done, and by when, but we are learning this is a process that runs on its own schedule.
Please pray for me, that my spirits keep up and I keep motivated and looking forward.
Please pray for Finley and me. I still haven’t blogged about Finley because I get so emotional about him. I need to pick a time to blog about him when I’ve got time to have a good cry.
I want Finley to move with me to Virginia. I feel better about that now than I did a few weeks ago, but it still is another one of those little miracles that has to happen along the way.
Finley is in many ways like my baby. At the same time, he is not a child. I talk to him about things I don’t share with anyone else. I would never do that with a child.
I am surprised by how much things like little comments on facebook mean when you’re really in a dark place. On the whole, I think I’m doing a good job of keeping my spirits up, but that isn’t to say that there aren’t days that are just, well, crappy. On those days it’s the support of all of you that help to keep me focused on moving forward and trying not to dwell on the losses.
There is a lot going on that could use prayer right now.
Please pray for my family. This is a stressful time for them as well as for me. Not knowing exactly when I’ll be moving and when our plans need to be put into action turns my stomach. I know it isn’t easy on Ryan and Sara and my parents either. We all want a plan. We want to know exactly what has to be done, and by when, but we are learning this is a process that runs on its own schedule.
Please pray for me, that my spirits keep up and I keep motivated and looking forward.
Please pray for Finley and me. I still haven’t blogged about Finley because I get so emotional about him. I need to pick a time to blog about him when I’ve got time to have a good cry.
I want Finley to move with me to Virginia. I feel better about that now than I did a few weeks ago, but it still is another one of those little miracles that has to happen along the way.
Finley is in many ways like my baby. At the same time, he is not a child. I talk to him about things I don’t share with anyone else. I would never do that with a child.
There are a lot of things I don’t talk to many, if anyone about. I worry not only about my health and the lung transplant process, but I worry about how this is all impacting my family and friends. I worry a lot about my brother’s family and how having someone as ill as I may become around the kids will affect them. I worry about the additional stress it will place on their family. I worry about my parents. I’m also very actively working on the process to try to gain access to a treatment for all HPSers. That alone is a major emotional roller coaster. I worry about all of my other HPS friends who are walking this same path with me. I have lost, at this point, dozens of personal friends to HPS. I know I will lose more. If I talked about these things all the time, even with those closest to me, no one would be able to stand to be around me. Finley, however, just looks at me, tilts his head, jumps in my lap and licks my ears. Sometimes when I’m sad he looks at me and runs to get one of his toys that he promptly drops on my foot. My mom gave me Finley because she wanted me to have something to focus on besides HPS all the time (a challenge when you have HPS, but also work for the HPS Network). Now, when every time I breathe I am thinking about my HPS, it seems like the worst possible time to lose Finley.
Still, for Finley to come with me, I need a support system for him as well. The good news when all this started, Finley was unable to stay by himself without barking. Now, he’s getting much better. I haven’t left him all day yet, but I have left him for up to four hours and he’s done fine. (I check up on him by recording him and checking with the neighbors.) Thus, I think he will be okay for frequent doctor appointments. The tricky part will be when I need to be in the hospital. This will happen from time to time. Sometimes it will be planned, but sometimes I will need to just have someone I can call to go get Finley from my apartment.
I have three families that will take Finley for even a couple of months if necessary, and see to it that he gets sent to my mom if I can’t take him back. This might happen when I actually get my transplant, or get very ill at the end of my life and have to be hospitalized. If I get new lungs, it might be several months before I’m healthy enough and allowed to be around animals. I am very confident that any one of these three families would come through. They are all people I know very well, and have known for years. The catch is none of them live close. They are all at least a few hours drive from Arlington. Thus, I would need a temporary foster parent to get Finley if I get the call and keep him until one of these families can drive down and pick him up. I don’t yet know how all this will come together, but I remain hopeful. I have had some good ideas from a number of people, some leads to follow up on etc. Even my vet here has been on the phone to vets in Arlington trying to get help for “team Finley.”
Please also pray for the entire HPS community. We are on the cusp of having a treatment (not a cure) for the lung disease of HPS. There are, of course, some obstacles that have to be overcome to get access to this treatment. Things are just more complicated and work differently when you are a very, very rare disease. Please pray that things go smoothly in this process so that those who desperately need access to this treatment can get it.
Finally, please pray for my future lung donor and their family. To get new lungs, someone has to pass away. For the lungs to be in good enough shape to transplant, the donor usually dies in some kind of sudden situation. It is usually a traffic accident. They are walking around right now with my future lungs (if I get lungs) and they have no idea that in a few years something terrible is going to happen to them. I know what is coming. As much as it is possible, I can plan. I can say goodbye to people. My family has had time to prepare. You can argue about which scenario is harder. To me, there is nothing productive in comparing pain.
All I know is that the owner of my future lungs has no idea what fate has in store, and they and their family are going to be the ones to make a heroic decision to let me have their lungs in the midst of a sudden and terrible loss. They need our prayers as much as I do.
Still, for Finley to come with me, I need a support system for him as well. The good news when all this started, Finley was unable to stay by himself without barking. Now, he’s getting much better. I haven’t left him all day yet, but I have left him for up to four hours and he’s done fine. (I check up on him by recording him and checking with the neighbors.) Thus, I think he will be okay for frequent doctor appointments. The tricky part will be when I need to be in the hospital. This will happen from time to time. Sometimes it will be planned, but sometimes I will need to just have someone I can call to go get Finley from my apartment.
I have three families that will take Finley for even a couple of months if necessary, and see to it that he gets sent to my mom if I can’t take him back. This might happen when I actually get my transplant, or get very ill at the end of my life and have to be hospitalized. If I get new lungs, it might be several months before I’m healthy enough and allowed to be around animals. I am very confident that any one of these three families would come through. They are all people I know very well, and have known for years. The catch is none of them live close. They are all at least a few hours drive from Arlington. Thus, I would need a temporary foster parent to get Finley if I get the call and keep him until one of these families can drive down and pick him up. I don’t yet know how all this will come together, but I remain hopeful. I have had some good ideas from a number of people, some leads to follow up on etc. Even my vet here has been on the phone to vets in Arlington trying to get help for “team Finley.”
Please also pray for the entire HPS community. We are on the cusp of having a treatment (not a cure) for the lung disease of HPS. There are, of course, some obstacles that have to be overcome to get access to this treatment. Things are just more complicated and work differently when you are a very, very rare disease. Please pray that things go smoothly in this process so that those who desperately need access to this treatment can get it.
Finally, please pray for my future lung donor and their family. To get new lungs, someone has to pass away. For the lungs to be in good enough shape to transplant, the donor usually dies in some kind of sudden situation. It is usually a traffic accident. They are walking around right now with my future lungs (if I get lungs) and they have no idea that in a few years something terrible is going to happen to them. I know what is coming. As much as it is possible, I can plan. I can say goodbye to people. My family has had time to prepare. You can argue about which scenario is harder. To me, there is nothing productive in comparing pain.
All I know is that the owner of my future lungs has no idea what fate has in store, and they and their family are going to be the ones to make a heroic decision to let me have their lungs in the midst of a sudden and terrible loss. They need our prayers as much as I do.
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