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Thoughts on CLL treatment and watch and wait
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
AdrianUK
in
CLL Support
6 years ago
10 months post transplant recipient...side effects
Hi all, I'm 10 months post kidney transplant. Most of the past 10 months have been pretty good. No issues with my kidney which is great! However, my side effects lately have been getting more and more intense around peak time. I get a burning pain in my chest and lower rib cage, I do have some tremors
Hi all, I'm 10 months post kidney transplant. Most of the past 10 months have been pretty good. No issues with my kidney which is great! However, my side effects lately have been getting more and more intense around peak time. I get a burning pain in my chest and lower rib cage, I do have some tremors
Jenny0604
in
Kidney Transplant
6 years ago
So many questions
I have so many questions to ask but my doctor doesn't have a few hours to answer them all. For instance why aren't people told that their kidney function is in decline by their doctor until they start getting symptoms or get to stage 3. This seems cruel and wrong to me? Why is your creatinine level
I have so many questions to ask but my doctor doesn't have a few hours to answer them all. For instance why aren't people told that their kidney function is in decline by their doctor until they start getting symptoms or get to stage 3. This seems cruel and wrong to me? Why is your creatinine level
Angie2020
in
Early CKD Support
6 years ago
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Liver Functions Test Are Out Of Range
Hi Everyone My daughter is 16 years old and was diagnosed with Biliary Atresia as a baby unfortunately the Kasai Portoenterostomy was unsuccessful and she had a liver transplant at the Birmingham Children's Hospital in year 2004. She has been very well however, recently her liver function test have
Hi Everyone My daughter is 16 years old and was diagnosed with Biliary Atresia as a baby unfortunately the Kasai Portoenterostomy was unsuccessful and she had a liver transplant at the Birmingham Children's Hospital in year 2004. She has been very well however, recently her liver function test have
Passion123456
in
Children's Liver Disease Foundation
6 years ago
Split-Liver Leak
Hi everyone! I had a split liver transplant 5 weeks ago today and up until a week ago, I had a drain inserted just underneath my liver as bile was leaking out from the split edge. This can happen with split liver transplants, but not always. I was wondering if anyone here has had any experience with
Hi everyone! I had a split liver transplant 5 weeks ago today and up until a week ago, I had a drain inserted just underneath my liver as bile was leaking out from the split edge. This can happen with split liver transplants, but not always. I was wondering if anyone here has had any experience with
Oliviaamyprice
in
British Liver Trust
6 years ago
Here it is. Times piece today on CLL and access to drugs. Skip dumb comments....
The Times chief reporter, Sean O’Neill, is writing about his leukaemia for the first time to highlight the unfair NHS policy on who can be offered life-saving drugs We had spent a glorious August day high in the Picos mountains in northern Spain, whizzing by cable car to the 1,800m peak of Fuenta De
The Times chief reporter, Sean O’Neill, is writing about his leukaemia for the first time to highlight the unfair NHS policy on who can be offered life-saving drugs We had spent a glorious August day high in the Picos mountains in northern Spain, whizzing by cable car to the 1,800m peak of Fuenta De
romarin
in
CLL Support
6 years ago
Getting back up and running
Earlier this month I braved my first run since my pneumothorax back in January. Unsurprisingly it was considerably slower and more difficult than immediately prior to the collapse but it felt great to be back out there again. Psychologically it's a huge lift as it's a sign that I'm getting stronger
Earlier this month I braved my first run since my pneumothorax back in January. Unsurprisingly it was considerably slower and more difficult than immediately prior to the collapse but it felt great to be back out there again. Psychologically it's a huge lift as it's a sign that I'm getting stronger
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
6 years ago
Just been to see my consultant.
Just been to see my respritory consultant, he asked me about having a lung transplant, this was a surprise as I didn't think I would ever be offered one. I will have to go to Newcastle for tests, I'm not worried. I know it's not gaurnteed be the offer is there. I'm also being assessed for home oxygen
Just been to see my respritory consultant, he asked me about having a lung transplant, this was a surprise as I didn't think I would ever be offered one. I will have to go to Newcastle for tests, I'm not worried. I know it's not gaurnteed be the offer is there. I'm also being assessed for home oxygen
Damon1864
Volunteer
in
Lung Conditions Community Forum
6 years ago
Advice needed regarding liver transplant and bilary atresia
Are there any mothers out there whose child was able to avoid liver transplant with kasai not successful initially? My son is 1 month 5 days post-surgery and docs are making a safety plan for transplant since his lab results are not showing improvement with pre-surgery results. His kasai was done at
Are there any mothers out there whose child was able to avoid liver transplant with kasai not successful initially? My son is 1 month 5 days post-surgery and docs are making a safety plan for transplant since his lab results are not showing improvement with pre-surgery results. His kasai was done at
Heyladydee
in
Children's Liver Disease Foundation
6 years ago
Stem cell transplant outcomes
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant (SCT) will soon be gone. I have so far resisted SCT because the outcomes are so unpredictable (especially if u don't have a related donor, which
jane13
in
MPN Voice
6 years ago
Kidney Transplant after Liver Transplant
HI Has anyone had to have a kidney transplant after having a new liver. My husband had a liver transplant in Nov 2017 and his kidneys do not seem to have recovered. Worst case scenario is a kidney transplant which is freaking him out. Would be grateful for any advice?
HI Has anyone had to have a kidney transplant after having a new liver. My husband had a liver transplant in Nov 2017 and his kidneys do not seem to have recovered. Worst case scenario is a kidney transplant which is freaking him out. Would be grateful for any advice?
Kimlescam
in
British Liver Trust
6 years ago
What I wish I had known about liver disease
My name is Rosemary and I am the wife of the FLF founder, Wayne Eskridge, who is an improving NASH/Cirrhosis patient. From 2010 to 2015, we were on a roller coaster ride, the type where you slowly get pulled up higher and higher, only to drop back down at stomach-turning speeds. Unfortunately, I hate
My name is Rosemary and I am the wife of the FLF founder, Wayne Eskridge, who is an improving NASH/Cirrhosis patient. From 2010 to 2015, we were on a roller coaster ride, the type where you slowly get pulled up higher and higher, only to drop back down at stomach-turning speeds. Unfortunately, I hate
nash2
Partner
in
Living with Fatty Liver and NASH
6 years ago
New system for allocating livers for transplant
From the British Liver Trust website. This should be of interest to all who may be a liver transplant candidate now or in the future. Jim https://www.britishlivertrust.org.uk/new-system-liver-transplant/
From the British Liver Trust website. This should be of interest to all who may be a liver transplant candidate now or in the future. Jim https://www.britishlivertrust.org.uk/new-system-liver-transplant/
LAJ123
in
British Liver Trust
6 years ago
Interesting Read.....I'm going to give Raw eating a try. What can it hurt?
Below is an article I found by googling "PBC and eating Raw." Also... I am not advocating anyone going off their medication. Anything anyone tries should first be run by your own medical professional. This is simply an article I came across and thought it was interesting enough to share. ❤ (Start)
Below is an article I found by googling "PBC and eating Raw." Also... I am not advocating anyone going off their medication. Anything anyone tries should first be run by your own medical professional. This is simply an article I came across and thought it was interesting enough to share. ❤ (Start)
Ktltel
in
PBC Foundation
6 years ago
High GGT post treatment for Acute Myeloid Leukaemia
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hi I have a GGT reading of 900. It has been rising steadily since a successful stem cell transplant in August. I drink very little and am only a bit overweight. My disease is in remission but am still not feeling well. Many of my symptoms - nausea, fatigue and loss of appetite could be caused by liver
Hidden
in
British Liver Trust
6 years ago
reducing
haven,t posted for long time, but been reading some of your reduction plans, i started at 40 mg, oct 2016, got down to 10 mg last spring, when i told my rheumy in august last yr about my 49 yr son diagnosed , with cancer, multiple myeloma, and that he would be having a stem cell transplant in januar
haven,t posted for long time, but been reading some of your reduction plans, i started at 40 mg, oct 2016, got down to 10 mg last spring, when i told my rheumy in august last yr about my 49 yr son diagnosed , with cancer, multiple myeloma, and that he would be having a stem cell transplant in januar
arvine
in
PMRGCAuk
6 years ago
Getting the phone call today
Hi everyone today I find out whether I'm on the list for liver transplant and I'm.do nervous. Scared of the operation and scared if I don't The assessment went really well at Addenbrook Hospital. I'm 43yrs old single parent my son is 7.
Hi everyone today I find out whether I'm on the list for liver transplant and I'm.do nervous. Scared of the operation and scared if I don't The assessment went really well at Addenbrook Hospital. I'm 43yrs old single parent my son is 7.
Hidden
in
British Liver Trust
6 years ago
Can someone give me some advice.
I got on this forum because of my niece. She is the one that has the kidneys failing. She is in the hospital and just started dialysis. The dialysis is not cleaning her blood. They want to do a blood transfusion. The question is will this change the results of a kidney transplant, will the new kidney
I got on this forum because of my niece. She is the one that has the kidneys failing. She is in the hospital and just started dialysis. The dialysis is not cleaning her blood. They want to do a blood transfusion. The question is will this change the results of a kidney transplant, will the new kidney
Garianne
in
Dialysis Support
6 years ago
CALR Type 1 & 2 Have Contrasting OS Outcomes
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations & ASXL1 and their ability to be included as Prognostically significant, and naturally wanted to share those findings hopefully to the benefit of others
socrates_8
in
MPN Voice
6 years ago
Hello Everyone
Hello members, my name is Justin Iorii a double kidney transplant patient and a dialysis survivor. If anyone has any questions or concerns on dialysis, pre-transplant, post-transplant, exercise or diet please message me, otherwise I will be on the look out for your posts !
Hello members, my name is Justin Iorii a double kidney transplant patient and a dialysis survivor. If anyone has any questions or concerns on dialysis, pre-transplant, post-transplant, exercise or diet please message me, otherwise I will be on the look out for your posts !
justinskidney
Moderator
in
Power2Save Transplant Community
6 years ago
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