Well, I am sure some of you know by now that Trish is back in the hospital. Her body continues to reject the liver. We were here a week ago and they administered 3 aggressive steroid treatments. Unfortunately it wasn't successful. Tonight she starts on a different immunosuppressant called thymoglobulin (a product from the gland of a rabbit). This is very aggressive and will really knock down her immunity system. This can come with some negative side effects, so they are going to administer the first treatment over 12 hrs. The next 3 treatments will be given over the next 4 to 8 days depending how her body can handle it. Hopefully this allows the oral anti rejection meds to take hold and keep rejection in check. This isn't unusual, its just the next logical step to stop rejection.
Keep her in your prayers.
Major Speed Bump - December 27, 2010
Me again,
Well I was very fortunate to be home for Christmas, and I am going to hang onto that blessing............as I head out for Omaha tomorrow morning at 5:30 am for another liver biopsy. My liver functions are higher than they were when I was in the hospital, and my bilirubin is creeping up again as well. Not the news I wanted by any means, but I will keep my chin up and get back down to the Med Center for what I need to have done. This process is frustrating, but I realize it is all a part of the roller coaster ride. If the biopsy once again shows moderate rejection, I will be readmitted to the hospital for more steroid treatments. If it does not show rejection, I will have to stay in Omaha to have my labs drawn for several days, or a week, or who knows. The labs from Kearney, especially my Prograf (anti-rejection med) levels are taking too long to get back, and the surgeon is quite concerned. The holiday may have played a part in this as well. I knew I didn't want to call the transplant coordinator today, but with some encouragement I did, I just wish the news would of been better.
I am so very thankful for a beautiful Christmas holiday with my family, that was priceless. The food was wonderful, and I got to see one of my oldest friends Jill who now lives in Texas. I really feel good, and it is hard to believe my numbers are so out of whack. I was tired yesterday, but I had wonderful care from everyone here. Thank you all for all of the beautiful Christmas cards, e-mails, and phone calls. The support is endless, and it lifts me up to face the next challenge.
All my love,
Trish
Well I was very fortunate to be home for Christmas, and I am going to hang onto that blessing............as I head out for Omaha tomorrow morning at 5:30 am for another liver biopsy. My liver functions are higher than they were when I was in the hospital, and my bilirubin is creeping up again as well. Not the news I wanted by any means, but I will keep my chin up and get back down to the Med Center for what I need to have done. This process is frustrating, but I realize it is all a part of the roller coaster ride. If the biopsy once again shows moderate rejection, I will be readmitted to the hospital for more steroid treatments. If it does not show rejection, I will have to stay in Omaha to have my labs drawn for several days, or a week, or who knows. The labs from Kearney, especially my Prograf (anti-rejection med) levels are taking too long to get back, and the surgeon is quite concerned. The holiday may have played a part in this as well. I knew I didn't want to call the transplant coordinator today, but with some encouragement I did, I just wish the news would of been better.
I am so very thankful for a beautiful Christmas holiday with my family, that was priceless. The food was wonderful, and I got to see one of my oldest friends Jill who now lives in Texas. I really feel good, and it is hard to believe my numbers are so out of whack. I was tired yesterday, but I had wonderful care from everyone here. Thank you all for all of the beautiful Christmas cards, e-mails, and phone calls. The support is endless, and it lifts me up to face the next challenge.
All my love,
Trish
Home for the Holiday - December 24, 2010
Merry Christmas,
We got some unexpected news today, I got to leave the hospital and go home for Christmas. The way my doctors were talking yesterday the chances of me getting out today were quite grim. I was admitted Wednesday afternoon following my liver biopsy with moderate rejection, which I thought was a small bump in the road. Dr. Sorrell said, it was a "moderate" bump in the road. He reminded me how well I have done, and not to get down over the rejection, we will get my medicine on the right track and be back on the right road to controlled liver numbers. He said due to the stronger meds they use today, they no longer lose patients to rejection, which is promising. I had my 3 days of IV steroid treatment, 1,000 mg per day, and they could not give me any more. My numbers had improved more than they thought they would this morning so I was released. I will go to Good Samaritan Hospital in Kearney tomorrow and Sunday for labs, then every day next week at the clinic to monitor my labs really close. If for some reason they increase again, I will have to have another liver biopsy, and go back to Omaha next Thursday. So we will pray for good numbers. For now I am going to enjoy being home with my family for Christmas. I was praying that I would not have to call home and tell my kids I would not be home for Christmas, another prayer was answered. Once again my care was wonderful, and I continue to feel great. I had some nausea earlier in the week but that has passed now.
They gave me no restrictions, but I will rest for this week. With all of the steroids that drives my immune system down, so I will be careful. Thank you for all of the continued support. Some of you, I won't mention any names (Kelli) cannot seem to follow directions very well. When she learned of my biopsy she told me she didn't have to work and would try to make it. I told her she had done so much, and I would have mom, Gracie, Tucker and Daniell there, so I really wanted her to stay home. As I was preparing to have my biopsy the nurse comes back and tells me I have a visitor, I thought it was Tucker, but no it was Kelli. I have said it before, you can't beat her off with a stick, and her support as been amazing. I love you Kelli, and thank you again. You are such a true friend through and through, but I still told you to stay home. :)
May you all have a glorious Christmas,
All my love to you,
Trish
We got some unexpected news today, I got to leave the hospital and go home for Christmas. The way my doctors were talking yesterday the chances of me getting out today were quite grim. I was admitted Wednesday afternoon following my liver biopsy with moderate rejection, which I thought was a small bump in the road. Dr. Sorrell said, it was a "moderate" bump in the road. He reminded me how well I have done, and not to get down over the rejection, we will get my medicine on the right track and be back on the right road to controlled liver numbers. He said due to the stronger meds they use today, they no longer lose patients to rejection, which is promising. I had my 3 days of IV steroid treatment, 1,000 mg per day, and they could not give me any more. My numbers had improved more than they thought they would this morning so I was released. I will go to Good Samaritan Hospital in Kearney tomorrow and Sunday for labs, then every day next week at the clinic to monitor my labs really close. If for some reason they increase again, I will have to have another liver biopsy, and go back to Omaha next Thursday. So we will pray for good numbers. For now I am going to enjoy being home with my family for Christmas. I was praying that I would not have to call home and tell my kids I would not be home for Christmas, another prayer was answered. Once again my care was wonderful, and I continue to feel great. I had some nausea earlier in the week but that has passed now.
They gave me no restrictions, but I will rest for this week. With all of the steroids that drives my immune system down, so I will be careful. Thank you for all of the continued support. Some of you, I won't mention any names (Kelli) cannot seem to follow directions very well. When she learned of my biopsy she told me she didn't have to work and would try to make it. I told her she had done so much, and I would have mom, Gracie, Tucker and Daniell there, so I really wanted her to stay home. As I was preparing to have my biopsy the nurse comes back and tells me I have a visitor, I thought it was Tucker, but no it was Kelli. I have said it before, you can't beat her off with a stick, and her support as been amazing. I love you Kelli, and thank you again. You are such a true friend through and through, but I still told you to stay home. :)
May you all have a glorious Christmas,
All my love to you,
Trish
Bump in the Road - December 23, 2010
Hello all,
I am writing a quick note from my hospital bed. Yes, you heard me right I am back in the hospital. They have been concerned about my liver function labs increasing, and even after a change of my meds they continued to climb, so the team requested that I have a liver biopsy on Wednesday morning. That worked out well because I was already flying into Omaha late on Tuesday night after working in Florida for the day. In my mind I would have my biopsy, hang out to make sure there was no bleeding and be on my way. Unfortunately I got a call late yesterday afternoon that my biopsy showed moderate rejection, and they needed to admit me for 3 days of high dose, IV steroid treatment, 1,000 mg per dose.
If all goes well I will be released on Christmas Eve, and by the look on Gracie's face I hope that happens.I convinced her to go home with mom and play with her cousins, and not spend 3 days in a hospital room.
I am confident in my care, and will pray the treatments will turn things around.
I wish you all a very Merry Christmas and a Happy New Year. I am so excited to give this holiday season, I have been given so much, and I am so thankful.Hopefully I will also get some of the cookies baked that I have mixed up in my refrigerator.
God Bless You All,
Trish
I am writing a quick note from my hospital bed. Yes, you heard me right I am back in the hospital. They have been concerned about my liver function labs increasing, and even after a change of my meds they continued to climb, so the team requested that I have a liver biopsy on Wednesday morning. That worked out well because I was already flying into Omaha late on Tuesday night after working in Florida for the day. In my mind I would have my biopsy, hang out to make sure there was no bleeding and be on my way. Unfortunately I got a call late yesterday afternoon that my biopsy showed moderate rejection, and they needed to admit me for 3 days of high dose, IV steroid treatment, 1,000 mg per dose.
If all goes well I will be released on Christmas Eve, and by the look on Gracie's face I hope that happens.I convinced her to go home with mom and play with her cousins, and not spend 3 days in a hospital room.
I am confident in my care, and will pray the treatments will turn things around.
I wish you all a very Merry Christmas and a Happy New Year. I am so excited to give this holiday season, I have been given so much, and I am so thankful.Hopefully I will also get some of the cookies baked that I have mixed up in my refrigerator.
God Bless You All,
Trish
Note from Rick Smith: December 17, 2010
Trish,
Sending an email to let you know am thinking and have thought of you often. So glad to hear you are doing so very well. Tears coming now, but tears of happiness. You take care and we are sending you wishes of all sorts.
Merry Christmas, love you - Beth and Rick Smith and girls.
Sending an email to let you know am thinking and have thought of you often. So glad to hear you are doing so very well. Tears coming now, but tears of happiness. You take care and we are sending you wishes of all sorts.
Merry Christmas, love you - Beth and Rick Smith and girls.
Quick Update - December 16, 2010
Hello All,
I just wanted to send you all an update. I got a call from the transplant coordinator earlier this week to see if I had a cold because my liver function tests had increased. I am feeling fine. Then I got another call yesterday, and my Prograf levels in my blood, which is my anti-rejection med is almost non-existent. It has been around 8, which is right where they want it. I went off my anti-fungal med last week, and they said that can make the Prograf levels drop. Therefore they doubled my dose as of yesterday. They had also decreased my steroid intake to 10mg per day on Tuesday, and for now that has not changed. I am hoping this med change will bring my Liver function tests back down. Of course by increasing the Prograf that can harm my kidneys. My initial dose was so low, hopefully the increase will not affect them.
I wrote my first letter to my donor family yesterday. For all of you that know me well, you are aware that finding words to say has never been an issue for me, but yesterday I sat at my computer and struggled. It was so important to me to express my gratitude in a way that they could feel it when they read my letter. After shedding many tears, and starting over several times, I hope I did just that.
My family also returned to court last week in hopes of putting this new appeal behind us, which we thought we had. However there was a document that the judge overlooked when making his decision that there would not be a new trial, he must now take that under advisement and get back to us once again. In the big picture we all realize this will be a life long fight to keep him in jail, but we would just like to put it behind us for awhile. The main thing is, he is where he needs to be, so we will count our blessings and roll with the punches. My nephew, Tracy's son is returning tomorrow from his training for the National guard in South Carolina. I know it was a hard decision for him to leave his family and join the guards, and we are all very proud of him. Tracy would have been as well. He will return in 2 weeks, then graduate the end of January. I will get some pictures over Christmas to post on the blog.
We have so much to be thankful for this Christmas season.
All My Love,
Trish
I just wanted to send you all an update. I got a call from the transplant coordinator earlier this week to see if I had a cold because my liver function tests had increased. I am feeling fine. Then I got another call yesterday, and my Prograf levels in my blood, which is my anti-rejection med is almost non-existent. It has been around 8, which is right where they want it. I went off my anti-fungal med last week, and they said that can make the Prograf levels drop. Therefore they doubled my dose as of yesterday. They had also decreased my steroid intake to 10mg per day on Tuesday, and for now that has not changed. I am hoping this med change will bring my Liver function tests back down. Of course by increasing the Prograf that can harm my kidneys. My initial dose was so low, hopefully the increase will not affect them.
I wrote my first letter to my donor family yesterday. For all of you that know me well, you are aware that finding words to say has never been an issue for me, but yesterday I sat at my computer and struggled. It was so important to me to express my gratitude in a way that they could feel it when they read my letter. After shedding many tears, and starting over several times, I hope I did just that.
My family also returned to court last week in hopes of putting this new appeal behind us, which we thought we had. However there was a document that the judge overlooked when making his decision that there would not be a new trial, he must now take that under advisement and get back to us once again. In the big picture we all realize this will be a life long fight to keep him in jail, but we would just like to put it behind us for awhile. The main thing is, he is where he needs to be, so we will count our blessings and roll with the punches. My nephew, Tracy's son is returning tomorrow from his training for the National guard in South Carolina. I know it was a hard decision for him to leave his family and join the guards, and we are all very proud of him. Tracy would have been as well. He will return in 2 weeks, then graduate the end of January. I will get some pictures over Christmas to post on the blog.
We have so much to be thankful for this Christmas season.
All My Love,
Trish
Follow up CT scan - December 9, 2010
Hello My Dear Friends,
Yesterday we travelled back to Omaha for a follow-up CT scan of my
chest. We had an appointment with the transplant infectious disease
doctors to follow. My fungal lung lesions were unchanged, so they are
going to stop my fungal medication and leave me alone, NO biopsy.
What a blessing. I was all ready to fight, and I didn't even have
to. I also had a transplant clinic appointment which went great.
They are just amazed at how well I am doing. I met a new internal
medicine doctor yesterday and he just looked at me and shook his
head. My liver numbers are fantastic, along with the rest of my
labs. It was funny, he asked me if I wanted to go home, and I told
him I had already been home for two weeks. I was released to work if
I want, however I am still restricted to lifting 10 lbs due to my
incision for another 2 weeks, so traveling with a suitcase by myself
could be a challenge. I will behave and do what they say, I do not
want a hernia now. I won't return to UNMC for another 6 weeks, and
that will be a follow-up with Dr. Sorrell. I have so much to be
thankful for.
While I was in the hospital it was the 25th anniversary of the first
liver transplant. Dr. Sorrell had stopped to see me and met Gracie
while he was there. He asked if him and his wife Shirley could take
her to the ceremony they were having to celebrate the 25 years of
liver transplants, and 40 years of kidney transplants. I have
attached a picture of Dr. Sorrell and Gracie from that day. She was
so proud to accompany them. I was sad Peyton wasn't up there to go
along as well. She had a great time meeting one of the first
transplant patients, as well as the first transplant surgeon. I also
found out what number of transplant I was at UNMC, I was #83 in 2010,
and #2705 since the program began in 1985. They have come a long way
since I was a student at UNMC from 1990-1993.
Once again thank you all for the continued support of my journey. I
have been overwhelmed by all of the cards, gifts, e-mails and phone
calls. The generosity and kindness continues to overwhelm my hear.
With the help of all of you, I am prepared to write my first letter to
the donor family. I pray for a response, but I also understand if I
do not receive one. Enjoy the holiday season and blessings that it
brings.
Love,
Trish
Yesterday we travelled back to Omaha for a follow-up CT scan of my
chest. We had an appointment with the transplant infectious disease
doctors to follow. My fungal lung lesions were unchanged, so they are
going to stop my fungal medication and leave me alone, NO biopsy.
What a blessing. I was all ready to fight, and I didn't even have
to. I also had a transplant clinic appointment which went great.
They are just amazed at how well I am doing. I met a new internal
medicine doctor yesterday and he just looked at me and shook his
head. My liver numbers are fantastic, along with the rest of my
labs. It was funny, he asked me if I wanted to go home, and I told
him I had already been home for two weeks. I was released to work if
I want, however I am still restricted to lifting 10 lbs due to my
incision for another 2 weeks, so traveling with a suitcase by myself
could be a challenge. I will behave and do what they say, I do not
want a hernia now. I won't return to UNMC for another 6 weeks, and
that will be a follow-up with Dr. Sorrell. I have so much to be
thankful for.
While I was in the hospital it was the 25th anniversary of the first
liver transplant. Dr. Sorrell had stopped to see me and met Gracie
while he was there. He asked if him and his wife Shirley could take
her to the ceremony they were having to celebrate the 25 years of
liver transplants, and 40 years of kidney transplants. I have
attached a picture of Dr. Sorrell and Gracie from that day. She was
so proud to accompany them. I was sad Peyton wasn't up there to go
along as well. She had a great time meeting one of the first
transplant patients, as well as the first transplant surgeon. I also
found out what number of transplant I was at UNMC, I was #83 in 2010,
and #2705 since the program began in 1985. They have come a long way
since I was a student at UNMC from 1990-1993.
Once again thank you all for the continued support of my journey. I
have been overwhelmed by all of the cards, gifts, e-mails and phone
calls. The generosity and kindness continues to overwhelm my hear.
With the help of all of you, I am prepared to write my first letter to
the donor family. I pray for a response, but I also understand if I
do not receive one. Enjoy the holiday season and blessings that it
brings.
Love,
Trish
Hello Again...December 3, 2010
Me again,
I came across this picture taken of me post-op, hating the ventilator
and the hand restraints. I cannot believe how far I have come in 3
short weeks, and this picture reminds me of that. That was one of the
worst experiences I have ever had, however with all of the good
fortune I have had since, it seems like a distant memory. I compare
it to childbirth. It was really tough going through it at the time,
but once you see what miracle comes out of the pain your memory allows
you to forget how horrible it was. I am so thankful for that. I just
wanted to share this with you all. There is no holding back now,
after all you have seen my scar. For all of you that thought that may
have been too much information, there was that group of you that were
thinking to yourself, I wonder what her scar looks like? You know who
you are. Have a great weekend, and don't forget to count your
blessings, I count all of you as mine.
Trish
I came across this picture taken of me post-op, hating the ventilator
and the hand restraints. I cannot believe how far I have come in 3
short weeks, and this picture reminds me of that. That was one of the
worst experiences I have ever had, however with all of the good
fortune I have had since, it seems like a distant memory. I compare
it to childbirth. It was really tough going through it at the time,
but once you see what miracle comes out of the pain your memory allows
you to forget how horrible it was. I am so thankful for that. I just
wanted to share this with you all. There is no holding back now,
after all you have seen my scar. For all of you that thought that may
have been too much information, there was that group of you that were
thinking to yourself, I wonder what her scar looks like? You know who
you are. Have a great weekend, and don't forget to count your
blessings, I count all of you as mine.
Trish
Post-Op Update: December 3, 2010
Hello All,
I am 3 weeks post-op, and have been home over a week. Other than being tired come evening, I feel really good. I have no pain, and haven't had to take any of my pain meds. That is huge to me, because my pill intake is high enough everyday. I went back to UNMC yesterday for clinic and all of my labs look fantastic, the Dr. was so pleased. They may even decrease my steroid pills again next week. They also changed my lab schedule to just once a week. I will return next week for a CT scan of my lungs to see if the anti-fungal meds that I have been taking have decreased the size of the lung lesions. If not the Dr. I saw yesterday said another lung biopsy would be discussed. They can discuss it, but I am not up for that. So that is still up in the air. I will pray for a clear CT scan. Everything is great on my end, and I hope this finds all of you doing well and enjoying the holiday season. I will tell you all , the christmas lights are much brighter to me this year, and I have such a wonderful sense of peace in my heart. My gift came on November 10, 2010 and I am so blessed.
Happy Holidays,
Trish
I am 3 weeks post-op, and have been home over a week. Other than being tired come evening, I feel really good. I have no pain, and haven't had to take any of my pain meds. That is huge to me, because my pill intake is high enough everyday. I went back to UNMC yesterday for clinic and all of my labs look fantastic, the Dr. was so pleased. They may even decrease my steroid pills again next week. They also changed my lab schedule to just once a week. I will return next week for a CT scan of my lungs to see if the anti-fungal meds that I have been taking have decreased the size of the lung lesions. If not the Dr. I saw yesterday said another lung biopsy would be discussed. They can discuss it, but I am not up for that. So that is still up in the air. I will pray for a clear CT scan. Everything is great on my end, and I hope this finds all of you doing well and enjoying the holiday season. I will tell you all , the christmas lights are much brighter to me this year, and I have such a wonderful sense of peace in my heart. My gift came on November 10, 2010 and I am so blessed.
Happy Holidays,
Trish
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