When I was a Child Life Intern over the summer of 1999 in preparation for what I hoped would give me experience for the field I was pursuing as a career, Art Therapy with terminally ill children, I learned something interesting about "older" patients with CF (Cystic Fibrosis). Not too many years ago, it was expected that CF patients would not live beyond their teens or early 20's. For this reason, after high school they typically didn't make any long term plans for life. Few went to college and most focused on just getting part-time jobs and not really planning long term.
However, as technology advanced and and new treatments were developed, CF patients started to live longer lives and found themselves living well into their late 20's, 30's, and in some cases, even 40's and 50's. This put them in a transition period which often led to depression. They began to feel like they should be doing more with their lives. They had dreams, but weren't sure if they were worth pursuing as they continued to age and deteriorate. If they had known in advance they would have lived that long, they would have begun a career and gone to college. But they were still in limbo. They were basically waiting to die as it could come at any time, but they also may not...they may still have years left.
While none of us knows when we are going to die and should always live each day as if it is our last, we also shouldn't live in fear and not work towards the future because we DON'T know. Unfortunately, with people facing chronic, serious illnesses in which major complications could come at any time, life and decision making is very complicated. Plus, if you already have so many complications interfering, overcoming obstacles just to reach dreams and goals will take longer than an average person. It can be discouraging. Making the decisions to step out and pursue big dreams is even more complicated. Is it reasonable? Will I invest a lot into it, only to have to stop because of all the challenges? My body rules me- there is no way around it. While I have limited control in how I feel by forcing myself to think positively, get out and do good things, focus on others, and not let my challenges rule everything, the fact is, my body tells me what to do every day and I don't know from one day to the next what it will tell me.
Right now I am in what I consider to be a period of transition. In some ways this is good, in some ways it is bad. I think it's more good than bad as I am thinking in more healthy terms, but I am doing it during a time where my body is not physically strong enough to really pursue my dreams. The obstacles are huge. I don't know that it's even reasonable to consider the things I am thinking about, but I'm not one to let impossible or difficult get in my way. Perhaps the fact that I am dealing with so much has made my dreams and desire to fulfill them become even stronger?
Right now I don't know what my future holds. As I see my body deteriorating, I also see my visions and dreams changing in even bigger ways. There are things I want to do with my life that seem virtually impossible at this stage, yet seem to be overwhelming my mind. These are things that I have been considering for months, perhaps even a year, yet I have put in the back of my mind because I have considered them to be unreasonable and have felt that the time is not yet right to pursue them. However, as recent events in my life have unfolded and I have learned and experienced new things, dealt with recent challenges, and know I see a future of so many more complications, I feel like it is time to step out of the comfort zone I am in and make some big changes in my life.
I'm scared. Why? What I do right now is safe. I'm used to it. It lets me set my own pace, my own life, and gives me a chance to live my life around my health- something I need the flexibility of doing, yet it doesn't really challenge me in the ways I want to be challenged. I don't let this flexibility make me lazy. I have built things into my life to force myself to do some things that I often have to stretch myself so hard to do so that I don't get lazy. I don't want to spend my time at home within my limitations and let myself fall into a trap of thinking I am too sick to leave home and do some more active things. Sometimes do have a deadline I need to reach or require goal setting in order to achieve them. I need more stability. I need some changes in my life. My schedule has become monotonous. My life is starting to become boring and lonely. While it is fulfilling, satisfying, and I know God-led, I am beginning to feel like He is leading me in a different direction.
I feel like right now I am lost in transition. I want to make changes, but I realize that the changes I want to make are so big and so complicated. Things are getting harder for me all the time. Walking is a challenge. I have difficulty concentrating and learning. I keep developing new problems. I have some days when I actually feel worse than I did pre-transplant now, but I also have days when I feel really good. My health is still so unpredictable. Sometimes I honestly feel like things are improving, and then I get nailed with something else. Even one hour to the next is unpredictable. I can get up, go out, and then not feel safe driving home because I have a sudden attack and crash. I tend to fall and stumble a lot. I can only work on some projects requiring much concentration for short periods of time. My energy is so limited. Some days I am loaded with energy, while others I can barely lift my head off my pillow. My sleep patterns are messed up and based on meds, health crashes, nights of severe pain and nausea, and other medical factors out of my control. I have no control. My body truly defines just about everything I do. I have to overpower it sometimes and ignore as much as I can in order to go out and enjoy some normal things, but more often than not my activities in life are defined by my body.
I'm not even sure where these desires are coming from. Are they a calling from God? Are they emotional and impacted by recent challenges and changes in my life? Are they really things I should genuinely pursue or just lost dreams I can't give up? Are they related to my medications, or chemical and nutritional imbalances as I adjust to new tube feeding formula? Should I just dive in, or should I really lay it out and wait to see how my body responds medically to recent and upcoming changes? How do I overcome the obstacles I forsee? Some of the things I am considering will require giving up or limiting other huge parts of my life and other activities I am involved in. These are things I love doing, feel like I am called to do, but will have to be scaled back or stopped if I pursue my other passions or activities. These are not easy decisions. I am trying to figure out how to bring more normalcy into my life, gain more independence, while recognizing that my body is actually forcing me to become more dependent on others and even less normal as my conditions progress and I develop more complications.
I know I am a fighter. Impossible is not a word in my vocabulary. If there is something I feel strongly about, I will find a way to do it. It may seem cliche, but I do honestly believe that if I am supposed to do something, nothing will get in God's way of me doing it. But, we also have to take our own steps of faith and follow the lead. If it is guidance or a whisper from God that He has other plans for me, I know He will provide. I need to think a lot through and take that step of faith if I believe it is the right one. But it has major consequences. My decision could impact the lives of thousands if not handled correctly. It will change my life. I could potentially give up some things that have been such a big part of my life. I'm scared. I cry a lot because I am so confused and I am not sure what the source of these thoughts and emotions are. I want to do so much, but I don't want to have to give anything up in the process. I want to try new things, learn new things, and see if I can achieve so many other dreams.
I don't know what my future holds. I don't know if I have one year left, five years left, or 20 years left. All I know is that I feel like there is more to my life...more I am supposed to be doing. Different things than what I have been doing. Something that requires a significant commitment to something else and a really big change in life direction. It's difficult for me because my physical limitations will always hold me back to an extent. I have been able to handle what I have done for years and I feel safe there. But I also feel bored and frustrated. Is it time to consider some new ventures? Are these new ventures even reasonable or possible?
It's so easy for me to get frustrated and lonely because I don't live the typical life. Days can be long and social planning challenging. Because everyone else works all day, I spend days at home, staring at my computer, and often go all day with no one to talk to or interact with in person. My body operates on a different schedule than most and is so unpredictable that planning social activities can also be challenging when everyone else has such a limited, less flexible schedule for social planning.
I just want to be normal...I long to work all day, come home, cook dinner, and then spend the evening like everyone else...whether it be paying bills, doing laundry, taking care of kids or collapsing on the couch after a long, full day of work...too tired to even check my Facebook messages. I'm 33, dependent, still at home, not working, and just lost...lost between being too unhealthy to live normally and independently, yet being too well to spend my days isolated and trapped in my home waiting for the next medical crisis. It is unpredictable. It may come tomorrow, or it may not come for six months.
Sunday, May 15, 2011
Monday, May 9, 2011
Recent Events - My Status
A lot has happened physically and emotionally, but people often only get bits and pieces. Then I get asked a lot of questions I think people always have the answers to, only to find out they don't...but someone else has the answers to other things! I'll do my best to summarize what I can...it's been a while, so this is long, but the final requests are at the bottom as far as where I am now and what my greatest needs are.
A few weeks ago I started having a lot of problems with nausea, vomiting, pain, sleeping constantly, and diarrhea. Nothing had been changed, other than a very slight drop in my Cortef (steroids). After two trips to Hershey Med's ER for dehydration, I was admitted for a week for testing, dehydration, and malnutrition. I went to my doctor and found out I was running a low grade temp, something to be concerned about because it could be a sign of rejection.
After a week of testing, fluids, and a dose of sandostatin (octreotide) for the dumping syndrome, nothing new was found and they sent me home to manage the problems as usual. They encouraged me to go to Pittsburgh, but I really felt like I was just in a flare up and there wasn't anything new to be concerned about. Unfortunately, after just four days I was dehydrated again, in worse shape than I had been upon admission, and went back to my doctor. Once again, I was running a low grade fever. She said to call Pittsburgh. My mom did on the spot and Pittsburgh sent me to the ER with orders to have me transferred to UPMC from the Hershey Med ER. Unfortunately, in spite of what we told the doctor, he insisted that Pittsburgh had not made those orders and he was just to give me fluids and send me home. The next day, my coordinator called and asked where I was and what had happened. We told her what the doctor said, and she insisted that she absolutely did NOT tell him to not transfer me and to go back to Hershey and have my labs checked again. We did. I was feeling very sick and we waited there all day to hear back from Pittsburgh. In the end, they decided it would be safe for me to travel that day by car and come to clinic the following day.
On Thursday morning, clinic day, I saw Dr. Kareeem. He ran a bunch of blood tests and said it would be ok for me to go home for Easter weekend and return on Sunday night. He had my coordinator set me up for a week of testing the next week. This included a CT angio, biopsy, bunch of labs, and appointments with various doctors. I am severely allergic to CT contrast and had been scheduled for that on Monday morning. After learning of this, they decided to postpone the angio until Tuesday, give me lots of fluids, start me on prednisone for three doses, and IV benadryl an hour before the procedure along with more fluids. The angio came out BEAUTIFULLY! I got to see it in 3D on Thursday and the organs looked really cool! Dr. Kareem showed me my kidneys, spleen, stomach, liver, both pancreas', where the arteries were attached, and even bits and pieces of my old organs (which were definitely dead and ugly!). He said the images were so good and clear he was going to have a poster made for his office. He was serious too! Apparently I am going to be the second patient who has a big poster of my organs in his office!
Otherwise, we learned what I had suspected and the main reason I didn't really want to go back. Basically, I'm just dealing with the chronic stuff and there's not a whole lot they can do...it's management and dealing with the flare ups as they come. He did increase my steroids for energy and started me on some other new things too. He decided to change my tube feeding formula to see if something else would help.
That was a tough week in other ways though. That week, on Wednesday, a good friend who was transplanted around the same time that I was made the decision that after 16 months in the hospital dealing with one horror after another, that she was tired of being so sick. She continued to get bleeds and they told her eventually they wouldn't be able to stop one and she would bleed to death. Knowing this, she didn't want to suffer anymore or die that way. She asked to be removed from the vent. Before they put her on the vent that Wednesday, she had talked to her mom about it and begged her to let her go. Then she called her dad and told him that she was ready to let go and to please start driving to Pittsburgh...that she loved him.
I went to see her on Thursday afternoon. It was really tough...she knew I was there, but she was kind of out of it too. I just really wished there was more I could do for her. I talked to her mom quite a bit...her mom has been a rock for Angie over the years and always by her side. I asked how SHE (Linda) was doing, and she said..."Carissa, she just begged and begged and begged for us to let her go...it's been so long...she is so tired. I want to respect her wish." The family came in on Thursday and the final decision was made. The transplant doctors would have nothing to do with it, so the TICU docs stopped all the blood, TPN, fluids, dialysis, and all meds, except pain meds and sedation, on Thursday evening. On Friday Dr. Costa dropped by and was in tears. Around noon on Friday they pulled her off the vent and she passed within 30 minutes. They had music playing in the room at the time. Her mom was headed home to Ohio by that afternoon.
Upon Angie's request, she was buried in her blue jeans and with "Fuzzy." She was a tomboy and did not want to be buried in a dress! She was also an organ donor and reminded her mom of that, but unfortunately, due to all the infections her organs were not viable for donation. But, she gave back so much in others ways to all of us who knew her.
Her procession included her truck and her Stealth. 300-400 people attended, including nurses, doctors, and other transplant patients. Her influence on so many must have been clear! My friend, Jessica, also transplanted around the same time attended the funeral and spoke. Jessica, not typically one with a shortage of things to say, said it was the hardest thing she has ever had to do. Even though she had the speech written out, she couldn't speak...
That same night that Angie died, the transplant world lost another fabulous friend. Pauline Talty was a patient from Australia who was transplanted 19 months ago. She has been in the hospital more than out. She had been in the TICU in a coma for quite a while on a respirator. Unfortunately, there was no respirator strong enough to sustain her through her pneumonia. As they were attempting to put in an iron lung that night, she slipped away. Pauline's organs had completely rejected and her only option was another transplant. Dr. Kareem wanted to remove her organs and wait for new ones, but Linda (her mom) was not willing to make that decision and leave Pauline without organs when Pauline couldn't consent. In addition, Australia was not willing to pay for another transplant. They were hesitant about paying for the first and had to fight to even get to the states in the first place.
Pauline was a radiant Christian from Hillsong Church in Australia and I'm sure she met many other friends as she stormed through Heaven's gates that night, fully healed from her lifelong battle of health issues. Her mom, Linda, was also always at her side. I enjoyed our inpatient hallway conversations about the pointlessness of some of the things in the hospital, and Pauline gave me some hospital survival tips on the occasions we were in together.
We lost two beautiful women in less than 8 hours. It was one of the hardest days of my entire life...and obviously a really rough one for the UPMC transplant team too...the nurses, doctors, and all who loved, cared, and fought for both of them for so long...those who put so many hours into their lives and poured so much of themselves into each one. Needless to say, I was very depressed that weekend, but so thankful for my other transplant friends who were around that day so we could support each other through it...we texted, IMed on FB, and messaged each other to keep each other posted on everything...very tough...and I am so grateful for them and how close we all are. When one person has challenges or we lose one, it affects all of us equally...we are a family.
I've been home now for slightly over a week. I seem to be doing some better on the changes, but it's a bit early to tell. I did end up in the ER last Monday with a heart rate over 130 and low potassium and magnesium. Because I had just been released from the hospital, I talked to the doctor about taking the potassium orally with IV phenergan (to help with nausea caused by oral potassium) and avoid admission. They also gave me IV magnesium and fluids. My heart rate was so fast that in the ER they rushed me back so fast to a room and did an immediate EKG. They let me go home that night because they had managed to get my heart rate down with the fluids, potassium, and mag. We were worried about my long QT interval and history of cardiac arrest. I was dizzy, confused, sweating, and really weak when I went in. I felt much better the following morning. Once again, another LONG night in the ER as my dad and I got home around 5 AM.
I am eating some, or at least trying. It's not going well, but it's so important to keep pushing as much as I can. I have my days I really miss my g-tube in my stomach though for venting/draining and that's something I never thought I'd miss! It was just so much easier and pleasant to eat and know I could get rid of it without vomiting or having it hang around for days on end. I was much more interested in eating when I knew the consequences wouldn't be so bad for doing it! But it's something I didn't request of Kareem when he placed my j-tube because of the higher risk of infection. In the end, I might pursue it if this doesn't get under control and keeps eating up my life by being so sick and having to take phenergan (my nausea med, which makes me very sleepy!) all the time, but hopefully I can manage without going that route.
The most pressing issues are:
1. When I was having an endoscopy/biopsy done, the doctor must have either cracked or bruised a rib. I woke up from the procedure in a good deal of pain. Initially, I thought it was my typical liver pain, but it didn't get better and the pain only got worse. I also noticed the pain was more on my bones than anywhere inside. I have been in excruciating pain at times from it. Because i have osteoporosis, this is not necessarily surprising, but can be concerning as I am also on steroids and healing could be a problem. Since doctors don't do anything for cracked or bruised ribs anyway, I haven't been to get them x-rayed at all and am just trying to manage the pain. I am told it can take up to 4 weeks to heal, but am hopeful it won't take that long!
2. I just started my new tube feeding formula a few days ago. Pray that my body will adjust to the change. It's a slow process to switch because my body has been used to one kind, and now it is getting different nutrients. It's a diabetic formula, so we are hopeful that it will reduce dumping syndrome issues. It has fewer calories, unfortunately, but the hope is that if it doesn't make me as sick that I can orally make up for some of the lost calories. Right now I have to run it really slowly, and sometimes even stop it, because I am sick with the change. Pray that I don't lose much ground in the process of switching over and that this will help.
3. I am trying to get back into G-PACT again. I've been out of action for a while from being sick and there is a lot coming up. Please pray that I can catch up and get a number of big projects completed.
4. Although since Dr. K increased the steroids, I DO have more energy, I also don't like the side effects. They make me confused and moody at this level. Plus, they destroy my bones. The dose is very high! Although temporary until I get a boost of energy for a while, I am discouraged at being back up so high on them. We had been trying to come down. If this doesn't work, they will start me on Ritalin for energy. I may ask them to do that anyway. I would prefer a lower dose of Cortef and some ritalin than the side effects of the Cortef, even though Ritalin does some funky things to me too...they are more manageable!
5. I am trying to cut back on my nausea medication in order to keep from sleeping so much too, but my nausea is so severe. It's tough. I prefer to be alert and not dopey all the time, but nausea is tough for me...I can deal with pain a lot better! Unfortunately, my nausea meds are so limited. I am allergic to almost everything or they just don't work. Getting the dumping under control without aggravating the GP and CIP is complicated...but that's really the solution. Unfortunately, the right amount of sandostatin for the dumping is too much for the GP and CIP. For two years I have been trying to manage both, and it's been impossible. Please pray that some of the new meds will work. It's a new combination of things I am trying. I've taken them all before, but figuring out the doses so it's not too much of anything for either side is a challenge and something that will take a lot of trial and error...and even then, it's never going to be fully figured out because the GI tract is so complicated. As long as I can get it under more reasonable control though, I will be content.
Otherwise, things are going pretty well. I am celebrating my fifth transplant b-day (belated) on June 4th at the same time a friend is celebrating her 45th b-day. we have some fun stuff in mind! Nolan will be turning two this week and has started to talk quite a bit! He said "hi issa" today! He has the sweetest personality...such a happy kid!
I have been back at LCBC volunteering this past week quite a bit and plan to return to the Wheelhouse next week as long as my ribs are better. It's nice to be back. I get really bored and bummed out when I am stuck at home sick all the time!
Thanks for the prayers. In the midst of all this, God has been teaching me a lot. We're going through a series at LCBC that couldn't have come at a more perfect time. It's based on the book "The Land Between" by Jeff Minion who spoke at the Leadership Summit last summer. I bought the book then, but have just started reading it. The sermons have really been dead on each week in dealing with what I have had on my mind so much. Please read my blog from Saturday which expresses a lot of what has been on my mind as I deal with all of this...and so much more!
In closing, here are some of my most recent Carissaism's:
"With all the pain and all the tears, yet staying sane through all the years, I must be tough, I must still fight. Enough's enough, no end's in sight! I often feel like I'm so weak, I want a meal...too much to seek? I'll never stop my fight to "live," For what can top all those who give? Who've stuck by me through thick and thin, to make my life a win-win-win. I don't know why I have a chance, and when I cry, I also dance! Oh what an honor to be here now! Almost a goner I always WOW! There must be something I'm here to do, I hope I bring new life to you! My prayer is that God uses me, and as we chat that you will see, How God's great love is shining through, which I won't shove, but make anew!"
"Some people write & others speak. Some build & others destroy. Some see the glass as half-full, others half-empty. Many lead, others follow. Some are outgoing, others shy. Some are anxious, others calm. Some work ahead, others procrastinate. Some enjoy a busy schedule, others like to be free. We all have our differences. We don't always agree. But when we all come together, what an impact we can be!"
"The difference between Dreamers and the Achievers is like night and day. Everyone has dreams. It's the Dreamers who get out of bed every morning and work on their dreams who become Achievers."
"I have my ups and I have my downs. I have my smiles and I have my frowns. I know what's real and how I feel. I want to know when you are low! I care to hear about your fear. I love to read about your need, I want to pray 'bout what you say. When all is well, oh please do tell! It's part of life, the fun and strife! We all should care, feel free to share, do life together, good or bad weather. Fight through the storms and daily norms. Not feel alone, in laugh or moan."
"Tough times on the road of life are like mud puddles. They may slow you down and you may get stuck for a while, but w/ enough drive, solid tread and by putting all gears in motion, you will have enough power to pull out of it and continue the journey"
A few weeks ago I started having a lot of problems with nausea, vomiting, pain, sleeping constantly, and diarrhea. Nothing had been changed, other than a very slight drop in my Cortef (steroids). After two trips to Hershey Med's ER for dehydration, I was admitted for a week for testing, dehydration, and malnutrition. I went to my doctor and found out I was running a low grade temp, something to be concerned about because it could be a sign of rejection.
After a week of testing, fluids, and a dose of sandostatin (octreotide) for the dumping syndrome, nothing new was found and they sent me home to manage the problems as usual. They encouraged me to go to Pittsburgh, but I really felt like I was just in a flare up and there wasn't anything new to be concerned about. Unfortunately, after just four days I was dehydrated again, in worse shape than I had been upon admission, and went back to my doctor. Once again, I was running a low grade fever. She said to call Pittsburgh. My mom did on the spot and Pittsburgh sent me to the ER with orders to have me transferred to UPMC from the Hershey Med ER. Unfortunately, in spite of what we told the doctor, he insisted that Pittsburgh had not made those orders and he was just to give me fluids and send me home. The next day, my coordinator called and asked where I was and what had happened. We told her what the doctor said, and she insisted that she absolutely did NOT tell him to not transfer me and to go back to Hershey and have my labs checked again. We did. I was feeling very sick and we waited there all day to hear back from Pittsburgh. In the end, they decided it would be safe for me to travel that day by car and come to clinic the following day.
On Thursday morning, clinic day, I saw Dr. Kareeem. He ran a bunch of blood tests and said it would be ok for me to go home for Easter weekend and return on Sunday night. He had my coordinator set me up for a week of testing the next week. This included a CT angio, biopsy, bunch of labs, and appointments with various doctors. I am severely allergic to CT contrast and had been scheduled for that on Monday morning. After learning of this, they decided to postpone the angio until Tuesday, give me lots of fluids, start me on prednisone for three doses, and IV benadryl an hour before the procedure along with more fluids. The angio came out BEAUTIFULLY! I got to see it in 3D on Thursday and the organs looked really cool! Dr. Kareem showed me my kidneys, spleen, stomach, liver, both pancreas', where the arteries were attached, and even bits and pieces of my old organs (which were definitely dead and ugly!). He said the images were so good and clear he was going to have a poster made for his office. He was serious too! Apparently I am going to be the second patient who has a big poster of my organs in his office!
Otherwise, we learned what I had suspected and the main reason I didn't really want to go back. Basically, I'm just dealing with the chronic stuff and there's not a whole lot they can do...it's management and dealing with the flare ups as they come. He did increase my steroids for energy and started me on some other new things too. He decided to change my tube feeding formula to see if something else would help.
That was a tough week in other ways though. That week, on Wednesday, a good friend who was transplanted around the same time that I was made the decision that after 16 months in the hospital dealing with one horror after another, that she was tired of being so sick. She continued to get bleeds and they told her eventually they wouldn't be able to stop one and she would bleed to death. Knowing this, she didn't want to suffer anymore or die that way. She asked to be removed from the vent. Before they put her on the vent that Wednesday, she had talked to her mom about it and begged her to let her go. Then she called her dad and told him that she was ready to let go and to please start driving to Pittsburgh...that she loved him.
I went to see her on Thursday afternoon. It was really tough...she knew I was there, but she was kind of out of it too. I just really wished there was more I could do for her. I talked to her mom quite a bit...her mom has been a rock for Angie over the years and always by her side. I asked how SHE (Linda) was doing, and she said..."Carissa, she just begged and begged and begged for us to let her go...it's been so long...she is so tired. I want to respect her wish." The family came in on Thursday and the final decision was made. The transplant doctors would have nothing to do with it, so the TICU docs stopped all the blood, TPN, fluids, dialysis, and all meds, except pain meds and sedation, on Thursday evening. On Friday Dr. Costa dropped by and was in tears. Around noon on Friday they pulled her off the vent and she passed within 30 minutes. They had music playing in the room at the time. Her mom was headed home to Ohio by that afternoon.
Upon Angie's request, she was buried in her blue jeans and with "Fuzzy." She was a tomboy and did not want to be buried in a dress! She was also an organ donor and reminded her mom of that, but unfortunately, due to all the infections her organs were not viable for donation. But, she gave back so much in others ways to all of us who knew her.
Her procession included her truck and her Stealth. 300-400 people attended, including nurses, doctors, and other transplant patients. Her influence on so many must have been clear! My friend, Jessica, also transplanted around the same time attended the funeral and spoke. Jessica, not typically one with a shortage of things to say, said it was the hardest thing she has ever had to do. Even though she had the speech written out, she couldn't speak...
That same night that Angie died, the transplant world lost another fabulous friend. Pauline Talty was a patient from Australia who was transplanted 19 months ago. She has been in the hospital more than out. She had been in the TICU in a coma for quite a while on a respirator. Unfortunately, there was no respirator strong enough to sustain her through her pneumonia. As they were attempting to put in an iron lung that night, she slipped away. Pauline's organs had completely rejected and her only option was another transplant. Dr. Kareem wanted to remove her organs and wait for new ones, but Linda (her mom) was not willing to make that decision and leave Pauline without organs when Pauline couldn't consent. In addition, Australia was not willing to pay for another transplant. They were hesitant about paying for the first and had to fight to even get to the states in the first place.
Pauline was a radiant Christian from Hillsong Church in Australia and I'm sure she met many other friends as she stormed through Heaven's gates that night, fully healed from her lifelong battle of health issues. Her mom, Linda, was also always at her side. I enjoyed our inpatient hallway conversations about the pointlessness of some of the things in the hospital, and Pauline gave me some hospital survival tips on the occasions we were in together.
We lost two beautiful women in less than 8 hours. It was one of the hardest days of my entire life...and obviously a really rough one for the UPMC transplant team too...the nurses, doctors, and all who loved, cared, and fought for both of them for so long...those who put so many hours into their lives and poured so much of themselves into each one. Needless to say, I was very depressed that weekend, but so thankful for my other transplant friends who were around that day so we could support each other through it...we texted, IMed on FB, and messaged each other to keep each other posted on everything...very tough...and I am so grateful for them and how close we all are. When one person has challenges or we lose one, it affects all of us equally...we are a family.
I've been home now for slightly over a week. I seem to be doing some better on the changes, but it's a bit early to tell. I did end up in the ER last Monday with a heart rate over 130 and low potassium and magnesium. Because I had just been released from the hospital, I talked to the doctor about taking the potassium orally with IV phenergan (to help with nausea caused by oral potassium) and avoid admission. They also gave me IV magnesium and fluids. My heart rate was so fast that in the ER they rushed me back so fast to a room and did an immediate EKG. They let me go home that night because they had managed to get my heart rate down with the fluids, potassium, and mag. We were worried about my long QT interval and history of cardiac arrest. I was dizzy, confused, sweating, and really weak when I went in. I felt much better the following morning. Once again, another LONG night in the ER as my dad and I got home around 5 AM.
I am eating some, or at least trying. It's not going well, but it's so important to keep pushing as much as I can. I have my days I really miss my g-tube in my stomach though for venting/draining and that's something I never thought I'd miss! It was just so much easier and pleasant to eat and know I could get rid of it without vomiting or having it hang around for days on end. I was much more interested in eating when I knew the consequences wouldn't be so bad for doing it! But it's something I didn't request of Kareem when he placed my j-tube because of the higher risk of infection. In the end, I might pursue it if this doesn't get under control and keeps eating up my life by being so sick and having to take phenergan (my nausea med, which makes me very sleepy!) all the time, but hopefully I can manage without going that route.
The most pressing issues are:
1. When I was having an endoscopy/biopsy done, the doctor must have either cracked or bruised a rib. I woke up from the procedure in a good deal of pain. Initially, I thought it was my typical liver pain, but it didn't get better and the pain only got worse. I also noticed the pain was more on my bones than anywhere inside. I have been in excruciating pain at times from it. Because i have osteoporosis, this is not necessarily surprising, but can be concerning as I am also on steroids and healing could be a problem. Since doctors don't do anything for cracked or bruised ribs anyway, I haven't been to get them x-rayed at all and am just trying to manage the pain. I am told it can take up to 4 weeks to heal, but am hopeful it won't take that long!
2. I just started my new tube feeding formula a few days ago. Pray that my body will adjust to the change. It's a slow process to switch because my body has been used to one kind, and now it is getting different nutrients. It's a diabetic formula, so we are hopeful that it will reduce dumping syndrome issues. It has fewer calories, unfortunately, but the hope is that if it doesn't make me as sick that I can orally make up for some of the lost calories. Right now I have to run it really slowly, and sometimes even stop it, because I am sick with the change. Pray that I don't lose much ground in the process of switching over and that this will help.
3. I am trying to get back into G-PACT again. I've been out of action for a while from being sick and there is a lot coming up. Please pray that I can catch up and get a number of big projects completed.
4. Although since Dr. K increased the steroids, I DO have more energy, I also don't like the side effects. They make me confused and moody at this level. Plus, they destroy my bones. The dose is very high! Although temporary until I get a boost of energy for a while, I am discouraged at being back up so high on them. We had been trying to come down. If this doesn't work, they will start me on Ritalin for energy. I may ask them to do that anyway. I would prefer a lower dose of Cortef and some ritalin than the side effects of the Cortef, even though Ritalin does some funky things to me too...they are more manageable!
5. I am trying to cut back on my nausea medication in order to keep from sleeping so much too, but my nausea is so severe. It's tough. I prefer to be alert and not dopey all the time, but nausea is tough for me...I can deal with pain a lot better! Unfortunately, my nausea meds are so limited. I am allergic to almost everything or they just don't work. Getting the dumping under control without aggravating the GP and CIP is complicated...but that's really the solution. Unfortunately, the right amount of sandostatin for the dumping is too much for the GP and CIP. For two years I have been trying to manage both, and it's been impossible. Please pray that some of the new meds will work. It's a new combination of things I am trying. I've taken them all before, but figuring out the doses so it's not too much of anything for either side is a challenge and something that will take a lot of trial and error...and even then, it's never going to be fully figured out because the GI tract is so complicated. As long as I can get it under more reasonable control though, I will be content.
Otherwise, things are going pretty well. I am celebrating my fifth transplant b-day (belated) on June 4th at the same time a friend is celebrating her 45th b-day. we have some fun stuff in mind! Nolan will be turning two this week and has started to talk quite a bit! He said "hi issa" today! He has the sweetest personality...such a happy kid!
I have been back at LCBC volunteering this past week quite a bit and plan to return to the Wheelhouse next week as long as my ribs are better. It's nice to be back. I get really bored and bummed out when I am stuck at home sick all the time!
Thanks for the prayers. In the midst of all this, God has been teaching me a lot. We're going through a series at LCBC that couldn't have come at a more perfect time. It's based on the book "The Land Between" by Jeff Minion who spoke at the Leadership Summit last summer. I bought the book then, but have just started reading it. The sermons have really been dead on each week in dealing with what I have had on my mind so much. Please read my blog from Saturday which expresses a lot of what has been on my mind as I deal with all of this...and so much more!
In closing, here are some of my most recent Carissaism's:
"With all the pain and all the tears, yet staying sane through all the years, I must be tough, I must still fight. Enough's enough, no end's in sight! I often feel like I'm so weak, I want a meal...too much to seek? I'll never stop my fight to "live," For what can top all those who give? Who've stuck by me through thick and thin, to make my life a win-win-win. I don't know why I have a chance, and when I cry, I also dance! Oh what an honor to be here now! Almost a goner I always WOW! There must be something I'm here to do, I hope I bring new life to you! My prayer is that God uses me, and as we chat that you will see, How God's great love is shining through, which I won't shove, but make anew!"
"Some people write & others speak. Some build & others destroy. Some see the glass as half-full, others half-empty. Many lead, others follow. Some are outgoing, others shy. Some are anxious, others calm. Some work ahead, others procrastinate. Some enjoy a busy schedule, others like to be free. We all have our differences. We don't always agree. But when we all come together, what an impact we can be!"
"The difference between Dreamers and the Achievers is like night and day. Everyone has dreams. It's the Dreamers who get out of bed every morning and work on their dreams who become Achievers."
"I have my ups and I have my downs. I have my smiles and I have my frowns. I know what's real and how I feel. I want to know when you are low! I care to hear about your fear. I love to read about your need, I want to pray 'bout what you say. When all is well, oh please do tell! It's part of life, the fun and strife! We all should care, feel free to share, do life together, good or bad weather. Fight through the storms and daily norms. Not feel alone, in laugh or moan."
"Tough times on the road of life are like mud puddles. They may slow you down and you may get stuck for a while, but w/ enough drive, solid tread and by putting all gears in motion, you will have enough power to pull out of it and continue the journey"
Saturday, May 7, 2011
My life matters...YOUR life matters. Change the world!
You don't appreciate life as much until you've almost lost it. Once you are given a second chance, you really realize the meaning of it and how fragile it can be. So few people have the opportunity to re-evaluate life and the meaning of it.
My life isn't like "It's a Wonderful Life" in that I was never born, but I see it as if I have had the same opportunity to see what changes I can make to make the world a different place. I have learned this at a very early age. I appreciate life so much more! I get excited about the teeniest things that most people see as mundane and routine.
If something goes wrong, I'm normal and I DO complain, but I quickly try to straighten out. Problems are problems and they are tough. Life is tough. It is what it is. Some of us have been forced to tackle incredible challenges, while others have experienced a relatively normal life with relatively normal problems. But, we all have our struggles and I don't believe that anyone's problems are minor. They are all a big deal and have a profound influence on us. We grow through them, regardless of what they are. I want to hear about the struggles of everyone, regardless of how "minor" they may seem in comparison. I care about your concerns. They matter to me too! God must have really big, active, and perfect ears because He hears from me all the time!
People often ask me how I do it. How do I deal with so much? I don't really have any choice! No, it's not easy. No I am not always as strong as I appear to be or as I say. I'm just glad I'm still here to experience the problems and work my way through them. I am a stronger person for it. I get stronger all the time.
Going through a transplant is TOUGH. The process, the fears, the unknowns, the loss of others not so fortunate, the complications that arise, the complications expected to arise from long term-medications, and feeling lost in a world where people haven't had the same experiences. Trying to balance out my health life with any sense of "normalcy" like a job, having a family, living on my own, and having energy to spend time with friends and just hang out is challenging. I want to be "normal" in terms of life activities, but my body too often has its own plans. Some days I am too weak to get out of bed, while others I am energetic and ready to conquer the world. I never know what each day will be like. None of us do, but it's much more real and unstable for me.
I can be happy, jumpy, and feel well for half a day and be in the ER or hospital later that same day. I can look really good for a while, and then I crash out and can't move. I can be out driving, and then have to stop to avoid falling asleep at the wheel. I can feel well, then eat a piece of cheese or a few crackers and be sick the rest of the day. But, I am a fighter. I know I am strong.
I don't always feel strong though. Sometimes I just want to cry and cry and cry. I want to scream, throw pillows around, and shut out the world. Sometimes it doesn't seem fair. But life isn't fair. I don't know why I have been through all of this. All I know is that I can't imagine what my life would be like if I hadn't. What would I be doing? Would I be better off or worse off? Would I be as strong? Would God and relying on Him be as high of a priority in my life? I can't imagine my life any differently. I don't know it differently. Not that I wouldn't love to be functioning as my healthy friends and loved ones, but I'm not sure I really "miss" it because I don't really know what I'm missing out on. Maybe a day in the life of YOUR shoes would help me understand. But, I'm not sure I could handle the pain of experiencing a day in the life of an average person and really realizing what I have lost. Or perhaps, the pain wouldn't be as strong because I will realize what I have gained too. The things that you are missing out on because you haven't shared the good side of my experiences.
To the outside world this is horrendous. Yes, there are times that are horrendous and I want to give up, but I honestly don't know life any other way and perhaps that's one way I can cope. I've learned to adapt, change, and work through each new complication as it arises. I've had to become flexible. The fact is, God always comes through for me and gives me what I need to deal with each situation that arises. He will never allow me more than I can bear. When I feel like it is too much, He will always be there to supply all my needs. The feelings of His provisions when I am absolutely desperate and at His feet is something that can't be matched. Oh how He loves me so! He has been there for me in amazing ways over the past few weeks. I have felt His presence in the midst of some pretty tough challenges and He has brought me through in His own unique and loving ways.
What has this given me? I have to focus on that rather than what it has taken away. While it has robbed me of so much, it has given me so much more I believe that only a few people who deal with the same situations can obtain. Compassion unmatched by anyone who is not in my shoes. The opportunity to help others in ways I never would have had. I've met some incredible people who I can't imagine not being part of my life. I have matured and grown in ways that many people never do. I have an understanding and appreciation for the finer things that people don't notice. I love Mondays! Monday is another day of the week to cherish and live out the second life I have been given. It's not a day to dread!
I LOVE life. I say this all the time, but I LOVE LIFE! Even with its challenges, its ups and downs, discouragements, fears, overwhelming sadness, devastation, there is so much GOOD! Just look around you! There is so much to enjoy in life! So much to learn, so many people to meet, so many things to experience!
I LOVE people. I love helping people. I love being around people! All kinds of people! I used to not be as accepting of such a wide range of backgrounds, but now I LOVE everybody! I realize that everyone has a purpose in life. Some make bad decisions, some try to hurt me intentionally, some don't understand me, but it's ok. God loves everyone...EVERYONE. I strive to do the same.
It's so easy to feel useless in this world when you can't keep up with others or give back as much due to limitations. Your life matters. Whether you are homebound, unable to work, unable to give much back to society, whether you are brilliant or mentally challenged, a president or a pooper scooper, what you do is important. Somehow, somewhere, your life has had an impact on someone. That someone's world has been changed because of you. If that's all that you ever feel like you have accomplished in life, you have changed the world!
In a recent Carissaism I stated "Some people write and others speak. Some build and others destroy. Some see the glass as half-full, others half-empty. Many lead, others follow. Some are outgoing, others shy. Some are anxious, others calm. Some work ahead, others procrastinate. Some enjoy a busy schedule, others like to be free. We all have our differences. We don't always agree. But when we all come together, what an impact we can be!"
Make a difference in your world today! Even the simplest things matter!
My life isn't like "It's a Wonderful Life" in that I was never born, but I see it as if I have had the same opportunity to see what changes I can make to make the world a different place. I have learned this at a very early age. I appreciate life so much more! I get excited about the teeniest things that most people see as mundane and routine.
If something goes wrong, I'm normal and I DO complain, but I quickly try to straighten out. Problems are problems and they are tough. Life is tough. It is what it is. Some of us have been forced to tackle incredible challenges, while others have experienced a relatively normal life with relatively normal problems. But, we all have our struggles and I don't believe that anyone's problems are minor. They are all a big deal and have a profound influence on us. We grow through them, regardless of what they are. I want to hear about the struggles of everyone, regardless of how "minor" they may seem in comparison. I care about your concerns. They matter to me too! God must have really big, active, and perfect ears because He hears from me all the time!
People often ask me how I do it. How do I deal with so much? I don't really have any choice! No, it's not easy. No I am not always as strong as I appear to be or as I say. I'm just glad I'm still here to experience the problems and work my way through them. I am a stronger person for it. I get stronger all the time.
Going through a transplant is TOUGH. The process, the fears, the unknowns, the loss of others not so fortunate, the complications that arise, the complications expected to arise from long term-medications, and feeling lost in a world where people haven't had the same experiences. Trying to balance out my health life with any sense of "normalcy" like a job, having a family, living on my own, and having energy to spend time with friends and just hang out is challenging. I want to be "normal" in terms of life activities, but my body too often has its own plans. Some days I am too weak to get out of bed, while others I am energetic and ready to conquer the world. I never know what each day will be like. None of us do, but it's much more real and unstable for me.
I can be happy, jumpy, and feel well for half a day and be in the ER or hospital later that same day. I can look really good for a while, and then I crash out and can't move. I can be out driving, and then have to stop to avoid falling asleep at the wheel. I can feel well, then eat a piece of cheese or a few crackers and be sick the rest of the day. But, I am a fighter. I know I am strong.
I don't always feel strong though. Sometimes I just want to cry and cry and cry. I want to scream, throw pillows around, and shut out the world. Sometimes it doesn't seem fair. But life isn't fair. I don't know why I have been through all of this. All I know is that I can't imagine what my life would be like if I hadn't. What would I be doing? Would I be better off or worse off? Would I be as strong? Would God and relying on Him be as high of a priority in my life? I can't imagine my life any differently. I don't know it differently. Not that I wouldn't love to be functioning as my healthy friends and loved ones, but I'm not sure I really "miss" it because I don't really know what I'm missing out on. Maybe a day in the life of YOUR shoes would help me understand. But, I'm not sure I could handle the pain of experiencing a day in the life of an average person and really realizing what I have lost. Or perhaps, the pain wouldn't be as strong because I will realize what I have gained too. The things that you are missing out on because you haven't shared the good side of my experiences.
To the outside world this is horrendous. Yes, there are times that are horrendous and I want to give up, but I honestly don't know life any other way and perhaps that's one way I can cope. I've learned to adapt, change, and work through each new complication as it arises. I've had to become flexible. The fact is, God always comes through for me and gives me what I need to deal with each situation that arises. He will never allow me more than I can bear. When I feel like it is too much, He will always be there to supply all my needs. The feelings of His provisions when I am absolutely desperate and at His feet is something that can't be matched. Oh how He loves me so! He has been there for me in amazing ways over the past few weeks. I have felt His presence in the midst of some pretty tough challenges and He has brought me through in His own unique and loving ways.
What has this given me? I have to focus on that rather than what it has taken away. While it has robbed me of so much, it has given me so much more I believe that only a few people who deal with the same situations can obtain. Compassion unmatched by anyone who is not in my shoes. The opportunity to help others in ways I never would have had. I've met some incredible people who I can't imagine not being part of my life. I have matured and grown in ways that many people never do. I have an understanding and appreciation for the finer things that people don't notice. I love Mondays! Monday is another day of the week to cherish and live out the second life I have been given. It's not a day to dread!
I LOVE life. I say this all the time, but I LOVE LIFE! Even with its challenges, its ups and downs, discouragements, fears, overwhelming sadness, devastation, there is so much GOOD! Just look around you! There is so much to enjoy in life! So much to learn, so many people to meet, so many things to experience!
I LOVE people. I love helping people. I love being around people! All kinds of people! I used to not be as accepting of such a wide range of backgrounds, but now I LOVE everybody! I realize that everyone has a purpose in life. Some make bad decisions, some try to hurt me intentionally, some don't understand me, but it's ok. God loves everyone...EVERYONE. I strive to do the same.
It's so easy to feel useless in this world when you can't keep up with others or give back as much due to limitations. Your life matters. Whether you are homebound, unable to work, unable to give much back to society, whether you are brilliant or mentally challenged, a president or a pooper scooper, what you do is important. Somehow, somewhere, your life has had an impact on someone. That someone's world has been changed because of you. If that's all that you ever feel like you have accomplished in life, you have changed the world!
In a recent Carissaism I stated "Some people write and others speak. Some build and others destroy. Some see the glass as half-full, others half-empty. Many lead, others follow. Some are outgoing, others shy. Some are anxious, others calm. Some work ahead, others procrastinate. Some enjoy a busy schedule, others like to be free. We all have our differences. We don't always agree. But when we all come together, what an impact we can be!"
Make a difference in your world today! Even the simplest things matter!
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