It has been a tough couple of days. For some reason my pain has been completely out of control. Judy, my palliative care nurse was able to get Dr. Giannini to write for the IV Benadryl. As I've said before, the IV Benadryl helps make the dilaudid more effective and last longer. I was getting IV Benadryl with the IV antibiotics, but since I won't be getting any more IV antibiotics, I needed it to help with my pain. It took many days to try to arrange it. First, for some reason it was difficult to get the order to professional home care. They faxed it multiple times, but for some reason, the pharmacy didn't get it. Then, it was a task to get it and have it delivered. I was in such severe pain that I was crying. I couldn't sleep as I was woken up by the pain shooting through my body. Each breath is pain staking. Even the pain medication doesn't touch the pain. I worry that I'm becoming dependent and that is why it is growing less and less effective, but the pain is getting so much worse. I know that soon we will have to change to either liquid or IV medication. It frustrates and scares me.
I had another episode of bleeding from the trach. I didn't do anything for it because I know there is nothing they can do. I know that I will not bleed to death and it looks worse than it is. You never get used to coughing up blood. My cough is worse as well which proves to me that once again the IV antibiotics didn't kill whatever it is in my lungs. My sats have been low as well. I am on 10L and can't really go any higher. I was in so much pain yesterday that I couldn't go to the movies with mom as we had planned. I know it hurts her to see me in pain.
I met with the hospice team on Thursday. They would like me to meet with Dr. Steingart before stopping the infusions. They talked with my pulmonology team, who of course said that they feel that my condition is not terminal. Even though my condition continues to decline, they refuse to see it. They then called Dr. Steingart whom I haven't seen since I got back from rehab, at which point I wasn't as sick. He hadn't known about my deterioration. Obviously, he was caught off guard since last I was doing better and the trach had helped my breathing. When they asked him about life expectancy if I came off Igg, he was unable to give a fixed amount of time. I know that it's okay because Dr. Giannini is the main person managing my care and she is able to sign the paperwork. The hospice team does want to make sure we have exhausted all options of treatment. I wish that we could find something that would help and make a difference. It is my one true wish. But I don't want to keep suffering. I worry this will keep me off hospice. I don't want to be on hospice if there is hope in something else, but I can't live like this either - with every breath being agonizing. I pray to breathe easy.
Another cyster (person with cystic fibrosis) died last night. Cystic fibrosis is a genetic disease that because of a gene mutation they have no chloride ion channels in their cells. This causes their mucous to be very sticky. They have a lot of lung problems. They get a lot of infections because their mucous is so thick and sticky that they can't cough it up. The many infections damage their lungs, somewhat the same as me. It is almost inevitable at some point they will require a double lung transplant as their lungs go into lung failure. For some, they get too sick to qualify for transplant. Others, for some reason, may not be candidates. In cases such as these, they die at a young age. Hannah was 20. It makes me so sad to think of all those that have died way before their time. I think of many others with different lung diseases that cause them to die young. It's just not fair. This is a world in which I wish we had more answers, more solutions. Medicine has come a long ways over the years. What used to be open heart surgery is now done laparoscopicly. Despite the advances, still many die too young. I grieve for all the mothers and fathers, sisters and brothers, family members and friends, boyfriends and husbands, who are taken from this world too young. They are such wonderful amazing people, whose lives are cut short. How I wish for me and those like me, there were ways to prevent this and give them the opportunity everyone deserves, the opportunity to live life.
Saturday, December 10, 2011
Monday, December 5, 2011
Transition to Hospice
I had my IVIg today. I have enough Igg for one more infusion, and then I either have to order more or stop the infusions. This is such a hard decision to make. My goal has always been to make it to Christmas. I was trying to hold off transitioning into hospice until after Christmas because it was very important to me to make it to Christmas and have an enjoyable holiday with my family. I have pretty much reached my goal and think that even if I were to go into hospice now, I'd still be here to enjoy Christmas. The hard part about all of this is deciding when to stop the Igg. I finished my last dose of IV antibiotics today. I have decided that this is my last dose of IV antibiotics. I won't be doing anymore antibiotics. Though this was a difficult decision to make, it is not nearly as difficult as deciding when to stop the Igg. Since September I've been fighting this infection. I have been on countless different IV antibiotics. Despite all the antibiotics, I still have the infection. Nothing seems to be killing it. The infection seems to start to get better when I start on the IV antibiotics, but somewhere in the 14 day course, the antibiotic seems to stop being effective, and the infection once again takes hold and gains the upper hand. I have just come to the point that it doesn't make sense to keep doing different IV antibiotics when they don't seem to be helping. It makes no sense to put these drugs into my body, medications that cost a lot of money, when they don't seem to be effective. There comes a point where you have to say, enough is enough. I am tired. My body is tired. I am the one that does all the medications. I don't have someone who does it for me, and as I grow weaker, as I decline and get sicker, even the simplest of tasks becomes overwhelming.
I tried to talk to Kathy again today about hospice and discuss with her that I was getting closer and closer to transitioning into hospice. She refuses to acknowledge reality. She wants to bury her head in the sand and live in denial. I know this is hard for her. I know that she has come to care deeply for me. I am not just a client/patient. I am more than that. I am like a daughter and a friend. She does not want to lose me, but denying reality is not going to help things. It won't make it different.
She looks at this as me giving up, throwing in the towel. But I am not giving up. Had I just been diagnosed and refused to even try treatment, that would be one thing, but I have done 6+ years of treatment. I have done IVIG. Most people do infusions once every 3 or 4 weeks, I do them once a week. I have given my life up to this disease. First I gave it my career in nursing, then I gave it my career in research and my Ph.D. I gave it animation and finally my tutoring. I have done the treatments,the tests, the medications. I have gone for 2nd and 3rd opinions and consults. And what have I gotten in return? She wants me to seek another opinion, but I have already done that many times. The only thing the doctors in Boston could offer me is more questions, no answers. If there really was hope that they would figure things out and find a treatment that would help me, I'd be more than happy to do it. I don't want to die. But, there are no answers. She says to me, "But they don't have a terminal diagnosis. They don't have an organism that is causing this severe infection." This is true. I could go to countless more doctors and undergo many more painful and invasive tests in hopes of having a diagnosis or coming up with a cause for my decline, but to me this is not important. It may make my treatment providers feel better. They will have answers and an explanation. They may feel less like a failure, but to me it is not worth it. The diseases and diagnoses they would be looking at are for progrssive terminal illnesses. Is it that important to have a reason why when there is no treatment? It won't change things. The result will still be the same. I will still be dying and there still won't be anything they can do to prevent it. The difference will be that I will have wasted some of the precious time I have left in doctors' offices or hospitals, undergoing painful and invasive medical procedures. For years I have gone from one specialist to another. I have heroically withstood procedure after procedure. I rarely cried or complained. I took the tests and treatments with strength, hoping that it would lead to answers, but it didn't. Now that my time is coming to an end, I dont want to waste the precious time I have doing procedures and tests. I want to spend the time I have with my family and friends, enjoying the time I do have and making memories that will last after I'm gone. It kind of reminds me of last summer when Abby got sick. The vet offered to do an X-ray and blood work and other tests to fully diagnose what was going on. When I asked how this would change her treatment protocol, I was told that it wouldn't. She'd be given the same medication. The difference would be they'd have a concrete clinical diagnosis. I chose not to have the tests done and instead just give her the medication. Why put her through those tests and be charged the extreme fee of having the tests when the treatment would remain the same. Even if I did all the testing, it wouldn't change the treatment. It may make my doctors feel better because they'll have a concrete cause of why this is happening, but it won't change anything for me. I will still be dying.
I understand that this is not a position that doctors are comfortable with. They went into medicine to save people. This is especially true because I'm so young. If I was 70 and had lived a good life, they would not have as hard a time accepting this as they do with someone my age who has not really even been given a chance to live. They feel powerless, and they feel like failures. But I don't view them as such. I am very grateful because they have given me more time than I would've had otherwise. Though the trach wasn't a cure, it gave me more time. Even an extra couple of months is something to be extremely grateful for, but it is important to realize that medicine doesn't have all the answers. It can't cure everything. There are times that things happen that we don't understand why. It may seem unfair. But I hold no anger at the circumstances. I am very grateful to have been given what I have. Medicine doesn't have all the answers and it can't fix everything. There is a time when you have to give it up to the Lord, and trust in Him. We like to think that we have control over all things. In truth, we have very little control over things.
I have found that how a person responds to me and the fact that I'm dying largely depends on how comfortable they are themselves with the topic of death. Death is a natural part of life. We are all dying. From the moment we take our first breath, we have already begun to work towards taking our last. Some of us are dying sooner than others, but the fact remains, we are all dying. It is impossible to escape this. Death is a natural part of life. While many view it as the end, in reality, it is just the beginning. I embrace this time of my life. I have struggled and suffered for many years now. My body has grown weak and no longer has the ability to fight. Instead, it embraces death as a freedom from the pain and suffering I have endured.
Right now life is such a struggle. Every breath hurts. The purpose of the trach was to increase my quality of life. Though I am grateful to have had this time, my time here on this earth is coming to a close. Every person has their line of things they are willing to tolerate, and the point at which they say enough is enough. I have reached that point. I am tired. I am weak. My body is weary and needs a rest. It is tired of fighting to live every day, every moment. I have fought so hard for many years, but now it is my time for peace, time for my suffering to come to an end. I do not have a quality of life. Kathy often says that she would never be able to do the things I do every day. If she would not want this quality of life herself, then how can she expect it for me? Do I not deserve to be free of suffering? I am not giving up. I have done treatment and therapy for many years, but what is the point if it has no benefit and only increases your sufferring? Don't I deserve to be at peace? She asked what terminal diagnosis I have. I don't have something concrete such as cancer. But I know that I am dying. The infusions are no longer working. All the medications I take and therapies I do seem pointless. If they were working, I wouldn't be in this position, and if they truly aren't working, what is the point on continuing them? There comes a point when you have to reach acceptance and give it up to the Lord. I am yours God. Your will be done. I know that I am powerless. I have no control over my life and death. If I am meant to die, nothing on this earth will keep me here. In the same way, if it is not my time, I will not go. Whether I go into hospice or not, will not matter. Going into hospice won't make or prevent me from dying. It will, however, determine my comfort level through my final journey.
The hardest thing about all of this is giving up the Igg. Logically, I know that it is no longer working. If it was, I would not be as sick as I am, but actually stopping the Igg is a difficult step. I don't want to die. If there was another option, if I were to get better, if there was a treatment, I'd be most happy. Since being diagnosed, I have fought for my Igg. To me, Igg is synonymous with life. No Igg is equal to sickness and death. Though I know it isn't working and doing no good, giving up the Igg is a true step of accepting that I will die. I know that when I stop the Igg I will get sicker and my pain will get worse. I am terrified of sufferring, of feeling like I am suffocating to death and not be able to do anything about that. This is what I am afraid of. I do not know what scares me the most, the idea of dying, or the idea of living indefinitely like this. I don't understand how people can say they wouldn't want to live as I do but then judge me and expect md to continue to suffer in this way. I have no quality of life. My body is dying. It is shutting down. It scares me to see how I have deteriorated. I can no longer shower myself. I am too weak. When I came home from rehab my weakness was due to muscles being weak. This is no longer the problem. The problem is not something that can be treated with physical therapy. It is a result of my body shutting down. My lungs are bleeding and falling apart. There is no way to treat this or fix it. Each breath is immensely painful. I can no longer do things for myself. I need help showering and dressing. I am no longer independent. I can't drive. I can't just get up and go somewhere whenever I want. I am reliant on others to get out of the house. I can no loner walk. I can't tutor. I tire so easily and after being awake for more than 2 hours, I am so tired that I must sleep. I fall asleep talking in mid-sentence. Technically I need to be vented, but I really don't want to go that route. I grow weary at having to do everything, care for everything myself. It is a daunting task. I ache. I hurt. I pray for relief. Hospice will give this to me. This is not easy. No person my age should have to be making these decisions. People make this process even harder by judging me. How I wish they could accept me and support me in whatever I decide is right for me.
I tried to talk to Kathy again today about hospice and discuss with her that I was getting closer and closer to transitioning into hospice. She refuses to acknowledge reality. She wants to bury her head in the sand and live in denial. I know this is hard for her. I know that she has come to care deeply for me. I am not just a client/patient. I am more than that. I am like a daughter and a friend. She does not want to lose me, but denying reality is not going to help things. It won't make it different.
She looks at this as me giving up, throwing in the towel. But I am not giving up. Had I just been diagnosed and refused to even try treatment, that would be one thing, but I have done 6+ years of treatment. I have done IVIG. Most people do infusions once every 3 or 4 weeks, I do them once a week. I have given my life up to this disease. First I gave it my career in nursing, then I gave it my career in research and my Ph.D. I gave it animation and finally my tutoring. I have done the treatments,the tests, the medications. I have gone for 2nd and 3rd opinions and consults. And what have I gotten in return? She wants me to seek another opinion, but I have already done that many times. The only thing the doctors in Boston could offer me is more questions, no answers. If there really was hope that they would figure things out and find a treatment that would help me, I'd be more than happy to do it. I don't want to die. But, there are no answers. She says to me, "But they don't have a terminal diagnosis. They don't have an organism that is causing this severe infection." This is true. I could go to countless more doctors and undergo many more painful and invasive tests in hopes of having a diagnosis or coming up with a cause for my decline, but to me this is not important. It may make my treatment providers feel better. They will have answers and an explanation. They may feel less like a failure, but to me it is not worth it. The diseases and diagnoses they would be looking at are for progrssive terminal illnesses. Is it that important to have a reason why when there is no treatment? It won't change things. The result will still be the same. I will still be dying and there still won't be anything they can do to prevent it. The difference will be that I will have wasted some of the precious time I have left in doctors' offices or hospitals, undergoing painful and invasive medical procedures. For years I have gone from one specialist to another. I have heroically withstood procedure after procedure. I rarely cried or complained. I took the tests and treatments with strength, hoping that it would lead to answers, but it didn't. Now that my time is coming to an end, I dont want to waste the precious time I have doing procedures and tests. I want to spend the time I have with my family and friends, enjoying the time I do have and making memories that will last after I'm gone. It kind of reminds me of last summer when Abby got sick. The vet offered to do an X-ray and blood work and other tests to fully diagnose what was going on. When I asked how this would change her treatment protocol, I was told that it wouldn't. She'd be given the same medication. The difference would be they'd have a concrete clinical diagnosis. I chose not to have the tests done and instead just give her the medication. Why put her through those tests and be charged the extreme fee of having the tests when the treatment would remain the same. Even if I did all the testing, it wouldn't change the treatment. It may make my doctors feel better because they'll have a concrete cause of why this is happening, but it won't change anything for me. I will still be dying.
I understand that this is not a position that doctors are comfortable with. They went into medicine to save people. This is especially true because I'm so young. If I was 70 and had lived a good life, they would not have as hard a time accepting this as they do with someone my age who has not really even been given a chance to live. They feel powerless, and they feel like failures. But I don't view them as such. I am very grateful because they have given me more time than I would've had otherwise. Though the trach wasn't a cure, it gave me more time. Even an extra couple of months is something to be extremely grateful for, but it is important to realize that medicine doesn't have all the answers. It can't cure everything. There are times that things happen that we don't understand why. It may seem unfair. But I hold no anger at the circumstances. I am very grateful to have been given what I have. Medicine doesn't have all the answers and it can't fix everything. There is a time when you have to give it up to the Lord, and trust in Him. We like to think that we have control over all things. In truth, we have very little control over things.
I have found that how a person responds to me and the fact that I'm dying largely depends on how comfortable they are themselves with the topic of death. Death is a natural part of life. We are all dying. From the moment we take our first breath, we have already begun to work towards taking our last. Some of us are dying sooner than others, but the fact remains, we are all dying. It is impossible to escape this. Death is a natural part of life. While many view it as the end, in reality, it is just the beginning. I embrace this time of my life. I have struggled and suffered for many years now. My body has grown weak and no longer has the ability to fight. Instead, it embraces death as a freedom from the pain and suffering I have endured.
Right now life is such a struggle. Every breath hurts. The purpose of the trach was to increase my quality of life. Though I am grateful to have had this time, my time here on this earth is coming to a close. Every person has their line of things they are willing to tolerate, and the point at which they say enough is enough. I have reached that point. I am tired. I am weak. My body is weary and needs a rest. It is tired of fighting to live every day, every moment. I have fought so hard for many years, but now it is my time for peace, time for my suffering to come to an end. I do not have a quality of life. Kathy often says that she would never be able to do the things I do every day. If she would not want this quality of life herself, then how can she expect it for me? Do I not deserve to be free of suffering? I am not giving up. I have done treatment and therapy for many years, but what is the point if it has no benefit and only increases your sufferring? Don't I deserve to be at peace? She asked what terminal diagnosis I have. I don't have something concrete such as cancer. But I know that I am dying. The infusions are no longer working. All the medications I take and therapies I do seem pointless. If they were working, I wouldn't be in this position, and if they truly aren't working, what is the point on continuing them? There comes a point when you have to reach acceptance and give it up to the Lord. I am yours God. Your will be done. I know that I am powerless. I have no control over my life and death. If I am meant to die, nothing on this earth will keep me here. In the same way, if it is not my time, I will not go. Whether I go into hospice or not, will not matter. Going into hospice won't make or prevent me from dying. It will, however, determine my comfort level through my final journey.
The hardest thing about all of this is giving up the Igg. Logically, I know that it is no longer working. If it was, I would not be as sick as I am, but actually stopping the Igg is a difficult step. I don't want to die. If there was another option, if I were to get better, if there was a treatment, I'd be most happy. Since being diagnosed, I have fought for my Igg. To me, Igg is synonymous with life. No Igg is equal to sickness and death. Though I know it isn't working and doing no good, giving up the Igg is a true step of accepting that I will die. I know that when I stop the Igg I will get sicker and my pain will get worse. I am terrified of sufferring, of feeling like I am suffocating to death and not be able to do anything about that. This is what I am afraid of. I do not know what scares me the most, the idea of dying, or the idea of living indefinitely like this. I don't understand how people can say they wouldn't want to live as I do but then judge me and expect md to continue to suffer in this way. I have no quality of life. My body is dying. It is shutting down. It scares me to see how I have deteriorated. I can no longer shower myself. I am too weak. When I came home from rehab my weakness was due to muscles being weak. This is no longer the problem. The problem is not something that can be treated with physical therapy. It is a result of my body shutting down. My lungs are bleeding and falling apart. There is no way to treat this or fix it. Each breath is immensely painful. I can no longer do things for myself. I need help showering and dressing. I am no longer independent. I can't drive. I can't just get up and go somewhere whenever I want. I am reliant on others to get out of the house. I can no loner walk. I can't tutor. I tire so easily and after being awake for more than 2 hours, I am so tired that I must sleep. I fall asleep talking in mid-sentence. Technically I need to be vented, but I really don't want to go that route. I grow weary at having to do everything, care for everything myself. It is a daunting task. I ache. I hurt. I pray for relief. Hospice will give this to me. This is not easy. No person my age should have to be making these decisions. People make this process even harder by judging me. How I wish they could accept me and support me in whatever I decide is right for me.
Saturday, December 3, 2011
Decorating the Christmas Tree
We got a Christmas tree and decorated it today. It was so special. It would've been Poppy's birthday today. I can't believe he's been gone over a year. I miss him so much, as if it were only yesterday. I know that he is in heaven and watching over me. I know he is helping me through this process and guiding me. I also know that I am surrounded by him and other angels that love me.
Christmas has always been my favorite time of year. I love Christmas. It's such a magical time of year. I always think of it as a time of hope, a time where miracles do happen. I love everything about Christmas. I love Christmas trees and the scent that fills the air. Some people have said real trees aren't good for people with immune disorders or breathing problems. Honestly, it doesn't matter to me if we should or shouldn't have them. Many people live their life with caution. They rarely go out and if they do, they wear a mask. I just can't live that way. I refuse to live my life that way. I would rather have one good year of truly living than many years of staying inside. Yes, I'd probably be more healthy, but what is the point if you can't enjoy life?
I have always been a huge Christmas person. I LOVE Christmas trees. I love the scent of the pine needles and the prick of the sap on your fingers as you hang ornaments on the branches. I'd have a Christmas tree all year around if I could. I'd decorate it for each of the holidays. Only thing is real trees don't do so well in the heat. I remember how much Aunt Bren loved Christmas and Christmas trees. She would have huge Christmas trees. We would go and decorate them. She got the Christmas tree the day after Thanksgiving and it stayed up until every needle had fallen and it truly had to be gotten rid of, but usually she could get it to last until Easter. She'd decorate it with hearts for Valentines Day and eggs for Easter. She had a gazillion ornaments. It was very special to be able to decorate the tree on Poppy's birthday. Grammy loves the tree and it is so good to see her smile.
Usually we would celebrate Christmas at mom's. I would sleep over on Christmas Eve after we had all gone to the midnight service. We would awake early (6:30am) and after mom had turned on all the lights and checked to see if Santa came we would go down the stairs together. Though we are all older and most people our age don't get up at the crack of dawn to open presents, but I never lost my childhood love of Christmas. I still believe in Santa Clause. No, not the person, but the spirit of Christmas. It is this childish belief that makes all things possible. Because of my mobility problems and my need to use a wheelchair to get around, we can't celebrate at mom's. Even if I could get in the house (there are only 3 steps to get into the house), I wouldn't be able to get down or up the flight of stairs necessary. This is why we have decided that this year well celebrate at Grammy's. Grammy and I will sleep at her place, and mom, Sher, and the boys will come over first thing once they wake up. Grammy's house is handicap accessible.
I think about Christmases past. One year, we made code names for each of us. We got out the walkie talkies and spoke to each other from different rooms to make sure we were all awake. We have always had rules that we couldn't wake mom up before 6:3. We would talk to each other, anxiously awaiting the time at which we could wake mom to see if Santa came. When we were all awake, we sang Christmas carols at the top of our lungs to wake mom up. It is the spirit of Christmas that is so wonderful. It is the one time of year when people are kind and giving. People donate to charity and to help those in need. It is a time of hope and celebration. When I was a kid it was all about presents, but as I've gotten older it has been about giving gifts and seeing the joy it brings to others.
This year it is bittersweet. I know that this is probably my last Christmas. My goal has always been to make it through Christmas. I have been trying to hang in there and not transition into hospice until after Christmas. This has always been my goal because Christmas is so important to me. It hurts me so much to think that next year I probably won't be here to celebrate with my family. It makes this one so special, but also very sad. I love my family so much and worry that next year they won't celebrate the same way. It crushes me to think I won't be here. How I wish I could control this, to somehow get more time. I am trying to make this year especially special so that my family has special memories for when I'm no longer here.
Christmas has always been my favorite time of year. I love Christmas. It's such a magical time of year. I always think of it as a time of hope, a time where miracles do happen. I love everything about Christmas. I love Christmas trees and the scent that fills the air. Some people have said real trees aren't good for people with immune disorders or breathing problems. Honestly, it doesn't matter to me if we should or shouldn't have them. Many people live their life with caution. They rarely go out and if they do, they wear a mask. I just can't live that way. I refuse to live my life that way. I would rather have one good year of truly living than many years of staying inside. Yes, I'd probably be more healthy, but what is the point if you can't enjoy life?
I have always been a huge Christmas person. I LOVE Christmas trees. I love the scent of the pine needles and the prick of the sap on your fingers as you hang ornaments on the branches. I'd have a Christmas tree all year around if I could. I'd decorate it for each of the holidays. Only thing is real trees don't do so well in the heat. I remember how much Aunt Bren loved Christmas and Christmas trees. She would have huge Christmas trees. We would go and decorate them. She got the Christmas tree the day after Thanksgiving and it stayed up until every needle had fallen and it truly had to be gotten rid of, but usually she could get it to last until Easter. She'd decorate it with hearts for Valentines Day and eggs for Easter. She had a gazillion ornaments. It was very special to be able to decorate the tree on Poppy's birthday. Grammy loves the tree and it is so good to see her smile.
Usually we would celebrate Christmas at mom's. I would sleep over on Christmas Eve after we had all gone to the midnight service. We would awake early (6:30am) and after mom had turned on all the lights and checked to see if Santa came we would go down the stairs together. Though we are all older and most people our age don't get up at the crack of dawn to open presents, but I never lost my childhood love of Christmas. I still believe in Santa Clause. No, not the person, but the spirit of Christmas. It is this childish belief that makes all things possible. Because of my mobility problems and my need to use a wheelchair to get around, we can't celebrate at mom's. Even if I could get in the house (there are only 3 steps to get into the house), I wouldn't be able to get down or up the flight of stairs necessary. This is why we have decided that this year well celebrate at Grammy's. Grammy and I will sleep at her place, and mom, Sher, and the boys will come over first thing once they wake up. Grammy's house is handicap accessible.
I think about Christmases past. One year, we made code names for each of us. We got out the walkie talkies and spoke to each other from different rooms to make sure we were all awake. We have always had rules that we couldn't wake mom up before 6:3. We would talk to each other, anxiously awaiting the time at which we could wake mom to see if Santa came. When we were all awake, we sang Christmas carols at the top of our lungs to wake mom up. It is the spirit of Christmas that is so wonderful. It is the one time of year when people are kind and giving. People donate to charity and to help those in need. It is a time of hope and celebration. When I was a kid it was all about presents, but as I've gotten older it has been about giving gifts and seeing the joy it brings to others.
This year it is bittersweet. I know that this is probably my last Christmas. My goal has always been to make it through Christmas. I have been trying to hang in there and not transition into hospice until after Christmas. This has always been my goal because Christmas is so important to me. It hurts me so much to think that next year I probably won't be here to celebrate with my family. It makes this one so special, but also very sad. I love my family so much and worry that next year they won't celebrate the same way. It crushes me to think I won't be here. How I wish I could control this, to somehow get more time. I am trying to make this year especially special so that my family has special memories for when I'm no longer here.
Thursday, December 1, 2011
Blood Transfusion
I finally got the blood transfusion - one unit. It was actually interesting because I didn't know my blood type. I've had blood transfusions before, but it's been awhile and I didn't remember my blood type. Mom is O+ and we thought Gary, my bio dad, was A+. We always assumed that both Sher and I were A+ as well because of the problems mom had when she had Sher. When my sister was born, she had a lot of problems right after birth. All of us were c-sections. I was the first born and since my mom had to have a c-section with me because she couldn't deliver me and being the first born I was the smallest, mom had to have c-sections with the others as well. The doctor assumed that there was no way she would be able to deliver vaginally because subsequent babies only get bigger. Anyway, I was delivered without incident, but when Sher was born she immediately had problems with breathing and other things. She was whisked away and taken to the nursery so the doctors could work on her. It was always assumed this was due to an ABO incompatibility. If the blood type of the baby differs from the mother, it can cause serious problems when the baby is born. This isn't a problem with the first child, but occurs with any subsequent birth. During birth of the first child there is some mixing of the blood. If the blood type of the first child is different from that of the mother, the mother develops antibodies to it. If any of the subsequent births are also different from the mother, the antibodies the mother made to the 1st child's blood type attacks the baby's, causing problems for the baby being born. This is something they check for during pregnancy. If it is caught during the pregnancy, the mother takes medication to prevent this reaction. Usually this reaction only occurs with RH factor differences (the mother is positive and the child is negative). We assumed that because of this reaction both Sherryl and I were A like Gary, however, it never made complete sense because we thought that both mom and Gary were positive, which wouldn't have caused the reaction Sher had. Now it makes sense. If I'm A-, then it makes sense if Sher is also A- she would've had problems at birth. This also means that when I need blood Sher could donate to me, but mom can't.
The blood transfusion went fine. It only took ~3 hours. I am quite disappointed. I really had high hopes that getting the blood transfusion would make a huge difference. I had hopes that it would bring color to my cheeks and help with the tiredness. The last time I needed a transfusion was when I was having problems with my kidneys and had a lot of bleeding. Immediately I felt a difference. I remember my cheeks got flush, nice and rosy, and I felt warm. I also felt like I had more energy. Though I knew the blood transfusion wasn't a cure, I had hopes that it would alleviate some of the symptoms I've been struggling with - extreme exhaustion, shortness of breath, and give my skin some color. I'm whiter than Casper. My skin almost looks translucent with huge dark circles under my eyes. Though my counts were only borderline, the hope was the transfusion would alleviate the symptoms. Unfortunately that didn't seem to happen. My skin doesn't have any more color than it did before and I'm just as tired as always. It's a huge disappointment to realize that these symptoms are due to the progression of the disease and a result of my body shutting down, not just because of anemia.
The blood transfusion went fine. It only took ~3 hours. I am quite disappointed. I really had high hopes that getting the blood transfusion would make a huge difference. I had hopes that it would bring color to my cheeks and help with the tiredness. The last time I needed a transfusion was when I was having problems with my kidneys and had a lot of bleeding. Immediately I felt a difference. I remember my cheeks got flush, nice and rosy, and I felt warm. I also felt like I had more energy. Though I knew the blood transfusion wasn't a cure, I had hopes that it would alleviate some of the symptoms I've been struggling with - extreme exhaustion, shortness of breath, and give my skin some color. I'm whiter than Casper. My skin almost looks translucent with huge dark circles under my eyes. Though my counts were only borderline, the hope was the transfusion would alleviate the symptoms. Unfortunately that didn't seem to happen. My skin doesn't have any more color than it did before and I'm just as tired as always. It's a huge disappointment to realize that these symptoms are due to the progression of the disease and a result of my body shutting down, not just because of anemia.
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