Good Morning,
What a beautiful morning it is. The sun is shining, and as I look out my window to the north the pastures are greening up. A sure sign that spring is here. The warm weather is just taking its sweet time getting here. I sent Gracie off to 4-H last night, and I think her horse was shivering. We have been blessed with some good rainfall, so if we get a few warm days it will really be green. A week ago as we headed off to Omaha, there was snow on the ground. Welcome to Nebraska.
I am finally feeling human again. No nausea, no headaches, and no fevers for several days now. Each day brings me new strength, and more energy. I had lost so much in the month of April. As I look forward, next month will mark 1 year that I found all of those tumors in my liver, and looking back I am so thankful for that dreadful day. It was one of those many blessings that I have experienced this past year. It is has been a ride that I will never forget. Thank you all once again for the continued support. You have made this journey bearable as you have carried me through many of my challenges with your e-mails, cards, and phone calls. I believe that I am going to put these challenges behind me, and never look back. That is where the hope comes in, it has brought me this far.
Bless you all,
Trish
Finally a Diagnosis - April 21, 2011
Good Afternoon,
Well it has been a long week, but well worth it. The transplant team admitted me last Friday really not knowing what was going on. I was so weak and sick, I did not even put up a fight. I had multiple tests including an abdominal ultrasound, 3 blood draws a day, and CT of my head. With my severe headaches and nausea, they became quite concerned that I had meningitis, which can happen at this point post-transplant, so they say. So on Sunday, I had my first and hopefully my last spinal tap. It came back negative. Dr. Shafer, one of the hepatologists on the liver team, and one of my favorites, walked in my room and said, Grote, you're killing me. They were baffled. I never seem to take the easy road. Then on Monday after numerous tests, they found that my quantitative CMV came back positive. This value for Cytomegalovirus should be ZERO, mine however was 450,000!!!!! I contracted this virus from my donor. About 80% of us carry it, but it usually stays dormant and causes no problems. But with my compromised immune system, it reared it's ugly head with a vengeance. They were going to send me home with a central line, and I was going to receive IV Ganciclovir, which is an very strong anti-viral for 3 weeks. However the liver team was concerned with the risk of infection from the central line, and wanted to try the oral medication Valcyte first. The bad part of taking these meds in this high dose is it affects my white count, with is already down to 3.0, and my neutrophils are only 1,000. Needless to say, I am so susceptible infections, that I will be staying home for a few weeks. If the Valcyte brings my numbers down too much, they will then switch me to the IV medication. With that large viral load, it will take some time to bring that number down. She also said that I can still feel poor for another 2 weeks, so that is something to look forward to. I am ready to meet this challenge head on and get back on the road to recovery. I hope I can convince my body of that.
This is bound to be one of my last bumps in the road, I am convinced of that. I am very weak, but it is so nice not to run a 103.5 fever, with a severe headache, so things are looking up. Thanks again for all of the love and concern. I am looking forward to sleeping in my own bed tonight, that is for sure. My mom has been awesome taking care of the kids, like always. I sure miss them when I am gone. I would like to thank the Kizer's and Uncle Al and Nolan for taking the kids here and there when they needed it. I hope to repay the favor some day. We couldn't get through this journey without so many caring people, I am so thankful to be surrounded by so many friends and family.
Bless you all,
Trish
Well it has been a long week, but well worth it. The transplant team admitted me last Friday really not knowing what was going on. I was so weak and sick, I did not even put up a fight. I had multiple tests including an abdominal ultrasound, 3 blood draws a day, and CT of my head. With my severe headaches and nausea, they became quite concerned that I had meningitis, which can happen at this point post-transplant, so they say. So on Sunday, I had my first and hopefully my last spinal tap. It came back negative. Dr. Shafer, one of the hepatologists on the liver team, and one of my favorites, walked in my room and said, Grote, you're killing me. They were baffled. I never seem to take the easy road. Then on Monday after numerous tests, they found that my quantitative CMV came back positive. This value for Cytomegalovirus should be ZERO, mine however was 450,000!!!!! I contracted this virus from my donor. About 80% of us carry it, but it usually stays dormant and causes no problems. But with my compromised immune system, it reared it's ugly head with a vengeance. They were going to send me home with a central line, and I was going to receive IV Ganciclovir, which is an very strong anti-viral for 3 weeks. However the liver team was concerned with the risk of infection from the central line, and wanted to try the oral medication Valcyte first. The bad part of taking these meds in this high dose is it affects my white count, with is already down to 3.0, and my neutrophils are only 1,000. Needless to say, I am so susceptible infections, that I will be staying home for a few weeks. If the Valcyte brings my numbers down too much, they will then switch me to the IV medication. With that large viral load, it will take some time to bring that number down. She also said that I can still feel poor for another 2 weeks, so that is something to look forward to. I am ready to meet this challenge head on and get back on the road to recovery. I hope I can convince my body of that.
This is bound to be one of my last bumps in the road, I am convinced of that. I am very weak, but it is so nice not to run a 103.5 fever, with a severe headache, so things are looking up. Thanks again for all of the love and concern. I am looking forward to sleeping in my own bed tonight, that is for sure. My mom has been awesome taking care of the kids, like always. I sure miss them when I am gone. I would like to thank the Kizer's and Uncle Al and Nolan for taking the kids here and there when they needed it. I hope to repay the favor some day. We couldn't get through this journey without so many caring people, I am so thankful to be surrounded by so many friends and family.
Bless you all,
Trish
Back to Omaha - April 14, 2011
Hello Again,
I wanted to drop a quick note and let you all know we are heading back to UNMC early in the morning. They offered to put me in the hospital today if I wanted to head down, but I chose to get the kids settled and head down tomorrow. I will have a liver ultrasound, more labs, an appointment with infectious disease and an appointment in the transplant center. I have had a little cough, nothing hardly noticeable, and now it has really gotten worse. So maybe that is it, the jury is still out. We really just want to try and get some answers so I can start to heal. Larry may just drop me at the door and ask me to call him when I am better. He has been very patient and kind, but I know it wears on everyone and I hate to be any type of burden. I will update you as I know something, and I am praying for answers and the wonderful healing. I have been so very fortunate through this whole journey, and I continue to be thankful for all of my blessings. This day too shall pass.
Love to you all,
Trish
I wanted to drop a quick note and let you all know we are heading back to UNMC early in the morning. They offered to put me in the hospital today if I wanted to head down, but I chose to get the kids settled and head down tomorrow. I will have a liver ultrasound, more labs, an appointment with infectious disease and an appointment in the transplant center. I have had a little cough, nothing hardly noticeable, and now it has really gotten worse. So maybe that is it, the jury is still out. We really just want to try and get some answers so I can start to heal. Larry may just drop me at the door and ask me to call him when I am better. He has been very patient and kind, but I know it wears on everyone and I hate to be any type of burden. I will update you as I know something, and I am praying for answers and the wonderful healing. I have been so very fortunate through this whole journey, and I continue to be thankful for all of my blessings. This day too shall pass.
Love to you all,
Trish
The forever flu.... April 14, 2011
Hello Everyone,
I thought I would drop a quick note to you all and update you on what has been going on. Just when you think it is smooth sailing ahead, sometimes we hit some rough waters. That is where I am right now. Back in March I had the stomach flu and severe headaches for 2 days, which was awful, but I just thought it was a bad case of the stomach flu. Until it came back a couple of weeks later, and has now lasted for 10 days straight. I have had nausea, vomiting, severe headaches, abdominal pain and now the past 4 days I have had high fevers. They have been running tests, CT scans, ultrasounds, MRI, blood cultures, urine cultures and so on and so forth. My liver numbers have never looked better, which is great. But they are at a loss. I had some free fluid in my pelvis, and they were concerned that I may have appendicitis, but the CT scan did not show any evidence of that. I do continue to have a biliary fluid collection in my liver, and that is the next thing they are going to look at closer. The transplant team are going to have the interventional radiologist compare my recent CT with my previous one in February and see if there are any changes. If so they may consider draining it. They are unable to find a cause for all of my symptoms, and I am tired of reliving every day over and over.
They have made some adjustments to my Prograf, which is my anti-rejection med. They normally keep those levels at 5-6, and my level ran anywhere from 10-12. They were keeping my level higher because of my bad rejection I had in December. They thought this might be causing me to be sick. Larry told them it is like I am being poisoned. I asked him if he had anything to tell me. He said we spent too much time and money to get a liver transplant, that he wouldn't poison me now. So they decreased my Prograf to 2 mg a day, and added a new med to go with it. I no longer take prednisone either, so that is great.
This is the first time in over a week I have been able to do much typing, so maybe I am going to see the light at the end of the tunnel. Although I usually feel the best in the morning, and then all hell breaks loose by late morning.
I will keep you all posted. I was not going to send an email, but Gracie had posted on her facebook account that I was sick, so I had enough calls and emails I thought I would explain in one note. On a separate note, we went to Omaha last Sunday for a Donor Family Reception that I was asked to speak at. I had no idea how I was ever going to be able to stand up on that stage and get through it, I was so very weak. But the good Lord blessed me once again, and helped me through it. There were 550 donor family members there. It was a very emotional day, but I was so honored to have the opportunity to express my overwhelming gratitude. I am still hopeful that someday I will meet my donor family. I hope this finds all of you well. I look forward to one good day, it will be a start, I will take what I can get.
Bless you all,
Trish
I thought I would drop a quick note to you all and update you on what has been going on. Just when you think it is smooth sailing ahead, sometimes we hit some rough waters. That is where I am right now. Back in March I had the stomach flu and severe headaches for 2 days, which was awful, but I just thought it was a bad case of the stomach flu. Until it came back a couple of weeks later, and has now lasted for 10 days straight. I have had nausea, vomiting, severe headaches, abdominal pain and now the past 4 days I have had high fevers. They have been running tests, CT scans, ultrasounds, MRI, blood cultures, urine cultures and so on and so forth. My liver numbers have never looked better, which is great. But they are at a loss. I had some free fluid in my pelvis, and they were concerned that I may have appendicitis, but the CT scan did not show any evidence of that. I do continue to have a biliary fluid collection in my liver, and that is the next thing they are going to look at closer. The transplant team are going to have the interventional radiologist compare my recent CT with my previous one in February and see if there are any changes. If so they may consider draining it. They are unable to find a cause for all of my symptoms, and I am tired of reliving every day over and over.
They have made some adjustments to my Prograf, which is my anti-rejection med. They normally keep those levels at 5-6, and my level ran anywhere from 10-12. They were keeping my level higher because of my bad rejection I had in December. They thought this might be causing me to be sick. Larry told them it is like I am being poisoned. I asked him if he had anything to tell me. He said we spent too much time and money to get a liver transplant, that he wouldn't poison me now. So they decreased my Prograf to 2 mg a day, and added a new med to go with it. I no longer take prednisone either, so that is great.
This is the first time in over a week I have been able to do much typing, so maybe I am going to see the light at the end of the tunnel. Although I usually feel the best in the morning, and then all hell breaks loose by late morning.
I will keep you all posted. I was not going to send an email, but Gracie had posted on her facebook account that I was sick, so I had enough calls and emails I thought I would explain in one note. On a separate note, we went to Omaha last Sunday for a Donor Family Reception that I was asked to speak at. I had no idea how I was ever going to be able to stand up on that stage and get through it, I was so very weak. But the good Lord blessed me once again, and helped me through it. There were 550 donor family members there. It was a very emotional day, but I was so honored to have the opportunity to express my overwhelming gratitude. I am still hopeful that someday I will meet my donor family. I hope this finds all of you well. I look forward to one good day, it will be a start, I will take what I can get.
Bless you all,
Trish
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