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Cree passed away
I'm sorry to let you all know that our friend Creewoman passed away this evening about 5:45 PM in the hospital. Her liver failed, her kidneys shut down, and she developed a cellulitis infection in her legs where the edema was so bad. She passed peacefully and without pain according to her family and doctor.
Thank you for your prayers. I know Cree's mother and the rest of her family thank you.
Advocate1955
Thank you for your prayers. I know Cree's mother and the rest of her family thank you.
Advocate1955
Advocate's advice is correct. I have so much empathy for those who have such long road trips for treatment. It just compounds everything. There is a man and his wife who make a 3 hour trip one way who have been in classes with me.
But even with being closer driving distance to all the treatment needed, the transplant process is time and energy draining. As most of you know I am at Stage 4 ESLD decompensated - level moderate. And even though I have a support team gathered for surgery and after surgery there are moments I am just overwhelmed with the day to day...since I am doing this basically alone and no one really understands it unless they are going through it. I have really energetic days and days I sleep non-stop.
I have the start of HE too and altho I have been able to drive myself to all my tests except 2 (because they required you to have someone with you) there is just a constant dread and I have put tests off. There is a financial concern. Gas and Parking...comes to about $15 each trip. Doesn't sound like a lot but if you are on a very limited income, it is. Plus you are worrying about the bigger financial picture. Totally overwhelming especially if you've always been independent.
Right now I have one more test to do on 10/7 for upper GI and I am done with tests. Many, many tests and procedures and everything came back good. All my docs say if it wasn't for this liver I'd be one of the healthiest 65 years olds they have ever seen, Darn liver.
I don't think a lot of people know all the steps you have to take to even get to the point of your case going before the transplant board to ok. In another post I listed all the tests and steps I've had to go through and I have seen them posted on Hector's too.
And you have to have team support but if you have got to be the team leader and motivator. No one can make you go to any appointments, tests or institution unless you have the will to do it. Sometimes the will comes too late. You don't just worrying about the here and now. You worry about the there after too.
Having a liver transplant is an enormous procedure. Plus the aftercare that goes on for months....overwhelming. The 1st 90 days you have to see the transplant surgeons twice a week and you won't be able to drive yourself. So you are also feeling guilty about interrupting someone else's life and routine with your problems.
I wouldn't wish having to get a liver transplant on my worst enemy but for those who need one, I hope you get it soon. Deaths like Crees and many others need to stop. I am always stating this: there are over 17,000 people on the liver transplant list and only approximately 4,000 will get a transplant. Odds are awful and something needs to be done.
That is why education about the Hep's, especially C, are so important plus why a change and maintaining that change in your life style is so important because even if you clear the C you would never want to compromise your liver. No one should ever go through this.
And one never knows what other medical issues will stop you on your quest to getting the liver transplant. I just spent the last 3 weeks getting dozens of x-rays due to a dark spot on my left breast. If they had found cancer the liver tp would have come to a halt but no breast cancer...yeah!
But if it had been cancer, then all of the tests for the liver tp would have been for not because I would have had to deal with the cancer first and then go back through the tests & requirements for a liver tp.
Plus once approved it is a waiting game of ups and downs.....mentally. All the while the clock is ticking. And you are getting weaker and weaker. That is why having a positive outlook is key.
That is why I appreciate all of you on this website because I take encouragement from your stories and success. I even get amusement from some of the bickering of opinions but that is what a true forum is...the sharing of information, stories and hope.
But even with being closer driving distance to all the treatment needed, the transplant process is time and energy draining. As most of you know I am at Stage 4 ESLD decompensated - level moderate. And even though I have a support team gathered for surgery and after surgery there are moments I am just overwhelmed with the day to day...since I am doing this basically alone and no one really understands it unless they are going through it. I have really energetic days and days I sleep non-stop.
I have the start of HE too and altho I have been able to drive myself to all my tests except 2 (because they required you to have someone with you) there is just a constant dread and I have put tests off. There is a financial concern. Gas and Parking...comes to about $15 each trip. Doesn't sound like a lot but if you are on a very limited income, it is. Plus you are worrying about the bigger financial picture. Totally overwhelming especially if you've always been independent.
Right now I have one more test to do on 10/7 for upper GI and I am done with tests. Many, many tests and procedures and everything came back good. All my docs say if it wasn't for this liver I'd be one of the healthiest 65 years olds they have ever seen, Darn liver.
I don't think a lot of people know all the steps you have to take to even get to the point of your case going before the transplant board to ok. In another post I listed all the tests and steps I've had to go through and I have seen them posted on Hector's too.
And you have to have team support but if you have got to be the team leader and motivator. No one can make you go to any appointments, tests or institution unless you have the will to do it. Sometimes the will comes too late. You don't just worrying about the here and now. You worry about the there after too.
Having a liver transplant is an enormous procedure. Plus the aftercare that goes on for months....overwhelming. The 1st 90 days you have to see the transplant surgeons twice a week and you won't be able to drive yourself. So you are also feeling guilty about interrupting someone else's life and routine with your problems.
I wouldn't wish having to get a liver transplant on my worst enemy but for those who need one, I hope you get it soon. Deaths like Crees and many others need to stop. I am always stating this: there are over 17,000 people on the liver transplant list and only approximately 4,000 will get a transplant. Odds are awful and something needs to be done.
That is why education about the Hep's, especially C, are so important plus why a change and maintaining that change in your life style is so important because even if you clear the C you would never want to compromise your liver. No one should ever go through this.
And one never knows what other medical issues will stop you on your quest to getting the liver transplant. I just spent the last 3 weeks getting dozens of x-rays due to a dark spot on my left breast. If they had found cancer the liver tp would have come to a halt but no breast cancer...yeah!
But if it had been cancer, then all of the tests for the liver tp would have been for not because I would have had to deal with the cancer first and then go back through the tests & requirements for a liver tp.
Plus once approved it is a waiting game of ups and downs.....mentally. All the while the clock is ticking. And you are getting weaker and weaker. That is why having a positive outlook is key.
That is why I appreciate all of you on this website because I take encouragement from your stories and success. I even get amusement from some of the bickering of opinions but that is what a true forum is...the sharing of information, stories and hope.
Hi Dee,
Cree did have a wonderful Primary Care Provider that she liked, trusted, and admired very much. He was taking very good care of her. He had been caring for her for several years, I believe. She had known for many years that she had Hep C, but had opted not to treat because she was very afraid of the side effects of the treatments. She also had other health issues (such as low platelets).
When her liver decompensated (sometime around April 2012), her PCP referred her to the Liver Transplant Center at University of Washington Medical Center. It was a long and difficult trip for her, 2 buses and about 6 hours on the road, and she delayed making the appointment. She found us here on Medhelp around in October - November, 2012, got to an appt at the UWMC transplant center in December, 2012. She was told it was too late (she already knew) to try to treat her Hep C due to decompensation/ESLD, and she needed to come back in Jan-Feb, 2013, for the 3 day assessment appointments/classes to be assessed for transplant eligibility.
For those of you who have not experienced the process for transplant assessment, it is lengthy. There are many steps that need to be taken care of before one can even begin to do the assessments and testing specifically for transplant assessment. For example, all dental work must be completed, colonoscopy/endoscopy must be updated, etc. When one is ill enough to need to be listed for a transplant, completing all of the necessary pre-steps before one can even begin the assessments and tests required for assessment, is a lot to manage.
In Cree's case she had the additional challenge of living a great distance from the closest transplant center. Sadly, her follow up appointment that was needed in Jan-Feb, 2013, was delayed until June, 2013, due to various difficulties she had getting the pre-steps completed as well as various hospitalizations due to decompensated Cirrhosis. She was in the hospital 2-3 times during that time period for low blood sodium/high potassium, cellulitis due to extreme edema, etc.
With extraordinary super human strength, given her health at the time, Cree came to her second appt at the transplant center in June, 2013, and completed the 3 day assessments/classes with her mother. To be honest, I don't know how she did it, given all of the hurdles and challenges, the severe edema, the cellulitis, and what I suspect was already ascites, but she did. She still needed to complete extensive dental work, and was having trouble finding a dentist near her small town who would complete the work due to her low platelets. She also still needed to have one more appointment at the transplant center (a stress EKG and some other things) before being approved for transplant, and that appt was scheduled for 8/19, but she passed a week prior to that date.
Between June, 2013 - July, 2013, her edema became even more severe, she developed ascites, and I suspect her liver truly began failing about the end of July, 2013. It had already been in early stages of failure for awhile, since we already know that she was decompensated/ESLD. However, looking back, it seems clear to me that by mid-July, 2013, there was a turning point where her liver truly began to fail. At that point, even if she had been here in Seattle, I suspect that the transplant center could not have done anything to help her as she had not yet completed all of the steps to be approved for a transplant, and I suspect she was in liver failure.
Cree did have people trying to help her get to transplant quicker (her significant other, her mother, her transplant center, her PCP), but it is a slow process with many, many hurdles and steps involved. For her, it involved either 12 hours round trip buses for a one day appointment or staying overnight for a three day series of appointments. She had HE, she was very ill, she was afraid....it took her a few months (April, 2012 - November, 2012) to get in gear, figure out what she needed to do, find us, and get moving. She delayed a lot of her appointments for whatever reason (financial resources, fear, feelings of being overwhelmed, pain, hospitalizations, poor health).
I too have been really stunned by her death. Sometimes I feel great sadness and frustration that she delayed so many appointments. Sometimes I feel great sadness and frustration that the process for being listed for a transplant is so lengthy and complex, especially given that transplant centers are caring for people who have HE and other life threatening health issues that make it difficult for them to advocate for themselves and manage so many hurdles. However, through this I have learned that the process is lengthy and complex for a reason. Transplant centers have to be sure that the people that they give those new, healthy livers to, are people who have a high chance of survival because there are just not enough livers and not enough donors. Then I remind myself that Cree did the best that she could do given her specific and unusually challenging set of circumstances. She had a great PCP who referred her to the right place at the right time. She had a great transplant hepatologist in a wonderful research based transplant center. They did their best, and she did her best.
I hope this helps explain. For those of us who are well, can drive, have medical insurance, and who work/have an income, it's hard to understand how or why making a six hour trip to another town could be an insurmountable hurdle, or how or why getting dental work or a colonoscopy/endoscopy could be an obstacle. The HE alone made everything more challenging, but adding in the severe edema, frequent infections, ascites, and distance from a transplant center, I think she did the best she could do.
Please share Cree's story, so that you can:
help people learn about Hep C;
help people get tested for Hep C;
help people who have Hep C decide to treat before they become too ill to treat;
help people who are eligible to be donors to become donors;
help people who have Cirrhosis get connected with a hepatologist; and help people who are already decompensated begin the process of being approved to be listed for a transplant.
Advocate1955
Cree did have a wonderful Primary Care Provider that she liked, trusted, and admired very much. He was taking very good care of her. He had been caring for her for several years, I believe. She had known for many years that she had Hep C, but had opted not to treat because she was very afraid of the side effects of the treatments. She also had other health issues (such as low platelets).
When her liver decompensated (sometime around April 2012), her PCP referred her to the Liver Transplant Center at University of Washington Medical Center. It was a long and difficult trip for her, 2 buses and about 6 hours on the road, and she delayed making the appointment. She found us here on Medhelp around in October - November, 2012, got to an appt at the UWMC transplant center in December, 2012. She was told it was too late (she already knew) to try to treat her Hep C due to decompensation/ESLD, and she needed to come back in Jan-Feb, 2013, for the 3 day assessment appointments/classes to be assessed for transplant eligibility.
For those of you who have not experienced the process for transplant assessment, it is lengthy. There are many steps that need to be taken care of before one can even begin to do the assessments and testing specifically for transplant assessment. For example, all dental work must be completed, colonoscopy/endoscopy must be updated, etc. When one is ill enough to need to be listed for a transplant, completing all of the necessary pre-steps before one can even begin the assessments and tests required for assessment, is a lot to manage.
In Cree's case she had the additional challenge of living a great distance from the closest transplant center. Sadly, her follow up appointment that was needed in Jan-Feb, 2013, was delayed until June, 2013, due to various difficulties she had getting the pre-steps completed as well as various hospitalizations due to decompensated Cirrhosis. She was in the hospital 2-3 times during that time period for low blood sodium/high potassium, cellulitis due to extreme edema, etc.
With extraordinary super human strength, given her health at the time, Cree came to her second appt at the transplant center in June, 2013, and completed the 3 day assessments/classes with her mother. To be honest, I don't know how she did it, given all of the hurdles and challenges, the severe edema, the cellulitis, and what I suspect was already ascites, but she did. She still needed to complete extensive dental work, and was having trouble finding a dentist near her small town who would complete the work due to her low platelets. She also still needed to have one more appointment at the transplant center (a stress EKG and some other things) before being approved for transplant, and that appt was scheduled for 8/19, but she passed a week prior to that date.
Between June, 2013 - July, 2013, her edema became even more severe, she developed ascites, and I suspect her liver truly began failing about the end of July, 2013. It had already been in early stages of failure for awhile, since we already know that she was decompensated/ESLD. However, looking back, it seems clear to me that by mid-July, 2013, there was a turning point where her liver truly began to fail. At that point, even if she had been here in Seattle, I suspect that the transplant center could not have done anything to help her as she had not yet completed all of the steps to be approved for a transplant, and I suspect she was in liver failure.
Cree did have people trying to help her get to transplant quicker (her significant other, her mother, her transplant center, her PCP), but it is a slow process with many, many hurdles and steps involved. For her, it involved either 12 hours round trip buses for a one day appointment or staying overnight for a three day series of appointments. She had HE, she was very ill, she was afraid....it took her a few months (April, 2012 - November, 2012) to get in gear, figure out what she needed to do, find us, and get moving. She delayed a lot of her appointments for whatever reason (financial resources, fear, feelings of being overwhelmed, pain, hospitalizations, poor health).
I too have been really stunned by her death. Sometimes I feel great sadness and frustration that she delayed so many appointments. Sometimes I feel great sadness and frustration that the process for being listed for a transplant is so lengthy and complex, especially given that transplant centers are caring for people who have HE and other life threatening health issues that make it difficult for them to advocate for themselves and manage so many hurdles. However, through this I have learned that the process is lengthy and complex for a reason. Transplant centers have to be sure that the people that they give those new, healthy livers to, are people who have a high chance of survival because there are just not enough livers and not enough donors. Then I remind myself that Cree did the best that she could do given her specific and unusually challenging set of circumstances. She had a great PCP who referred her to the right place at the right time. She had a great transplant hepatologist in a wonderful research based transplant center. They did their best, and she did her best.
I hope this helps explain. For those of us who are well, can drive, have medical insurance, and who work/have an income, it's hard to understand how or why making a six hour trip to another town could be an insurmountable hurdle, or how or why getting dental work or a colonoscopy/endoscopy could be an obstacle. The HE alone made everything more challenging, but adding in the severe edema, frequent infections, ascites, and distance from a transplant center, I think she did the best she could do.
Please share Cree's story, so that you can:
help people learn about Hep C;
help people get tested for Hep C;
help people who have Hep C decide to treat before they become too ill to treat;
help people who are eligible to be donors to become donors;
help people who have Cirrhosis get connected with a hepatologist; and help people who are already decompensated begin the process of being approved to be listed for a transplant.
Advocate1955
Thank you so much for your post, it really helped me.
I remember when she first came here and was already decompensated.
I figured she must have had HE as she mentioned a doctor appt for Sept 2012 but I never saw the results of that.
I wondered why there was no one helping her get tx or transplant faster
I have been really stunned by her death.
Thank you again for the post and also for helping her. You are a good friend
Love
Dee
I remember when she first came here and was already decompensated.
I figured she must have had HE as she mentioned a doctor appt for Sept 2012 but I never saw the results of that.
I wondered why there was no one helping her get tx or transplant faster
I have been really stunned by her death.
Thank you again for the post and also for helping her. You are a good friend
Love
Dee
Thank you again Belle and everyone for sharing you sympathy and condolences with the family.
nygirl7, I don't know what to say. I'm sorry for you to learn of Cree's passing this way, I know it's shocking. Her health had been steadily declining for the past year, but especially over the past few months (April - August). She was diagnosed with ESLD in April 2012 or so. By Sept - Dec, 2012, she had signs of HE (not diagnosed), significant weight loss, fatigue, and severe edema in the legs. She was in and out of the hospital for edema, cellulitis infections on her legs, and dangerously low sodium levels between December, 2012 and April, 2013. In April, 2013, she learned that she did indeed have HE and was treated for that. In June, 2013, the edema in her legs was extremely severe and her weight gain and swelling suggested ascites (not diagnosed). By July - August, 2013, the edema and ascites had progressed to a point where it was almost impossible for her to breathe or move, despite her proper attention to fluid intake, sodium intake, medications, and nutrition. That is something that strikes me about the progression of ESLD in dear Cree's case: how gradually, yet in the same way how rapidly, the disease progressed. It was gradual with it's ups and downs, declines and improvements, and glimmers of hope through connecting with the transplant center, a transplant team, and hope for being approved for a transplant. Yet it was a very steady and rapid decline, especially June - July, 2013, with her loss of mobility and independence, the great pain and difficulty with breathing, and the constant fatigue. Still, the news that the end was near was shocking. She called me 5 days before she passed, and she was still fighting. I can tell you nygirl7, without any hesitation, that Cree never gave up faith. I can also tell you that she kept fighting, right up to the last 2-3 days, but I think in those last 2 days she knew the time was near and she was ready. She called me 2 days before she passed, and the fight wasn't there, but her faith in her God was still there. I know that's not easy to hear. I do want you to know that the nurses and doctors assured her significant other, Griz, that she did not suffer in those last 2 days.
Again, the message that I know that Cree would want us all to take with us is get tested for Hep C, treat your Hep C when good treatment options are available, see a hepatologist when you learn you have Cirrhosis, and love your liver (take good care of it).
Advocate1955
nygirl7, I don't know what to say. I'm sorry for you to learn of Cree's passing this way, I know it's shocking. Her health had been steadily declining for the past year, but especially over the past few months (April - August). She was diagnosed with ESLD in April 2012 or so. By Sept - Dec, 2012, she had signs of HE (not diagnosed), significant weight loss, fatigue, and severe edema in the legs. She was in and out of the hospital for edema, cellulitis infections on her legs, and dangerously low sodium levels between December, 2012 and April, 2013. In April, 2013, she learned that she did indeed have HE and was treated for that. In June, 2013, the edema in her legs was extremely severe and her weight gain and swelling suggested ascites (not diagnosed). By July - August, 2013, the edema and ascites had progressed to a point where it was almost impossible for her to breathe or move, despite her proper attention to fluid intake, sodium intake, medications, and nutrition. That is something that strikes me about the progression of ESLD in dear Cree's case: how gradually, yet in the same way how rapidly, the disease progressed. It was gradual with it's ups and downs, declines and improvements, and glimmers of hope through connecting with the transplant center, a transplant team, and hope for being approved for a transplant. Yet it was a very steady and rapid decline, especially June - July, 2013, with her loss of mobility and independence, the great pain and difficulty with breathing, and the constant fatigue. Still, the news that the end was near was shocking. She called me 5 days before she passed, and she was still fighting. I can tell you nygirl7, without any hesitation, that Cree never gave up faith. I can also tell you that she kept fighting, right up to the last 2-3 days, but I think in those last 2 days she knew the time was near and she was ready. She called me 2 days before she passed, and the fight wasn't there, but her faith in her God was still there. I know that's not easy to hear. I do want you to know that the nurses and doctors assured her significant other, Griz, that she did not suffer in those last 2 days.
Again, the message that I know that Cree would want us all to take with us is get tested for Hep C, treat your Hep C when good treatment options are available, see a hepatologist when you learn you have Cirrhosis, and love your liver (take good care of it).
Advocate1955
Oh Jesus I can't believe I logged on to this. I just don't even know what to say Ad. Think ill just cry.
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