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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
Strength in numbers
A couple of weeks ago I visited the BLF Direct Helpline team up in Liverpool as part of my induction training after joining the BLF in December. I was enormously impressed by everything that I saw and what struck me the most was just how passionate, friendly and hard-working the whole team are. Their
A couple of weeks ago I visited the BLF Direct Helpline team up in Liverpool as part of my induction training after joining the BLF in December. I was enormously impressed by everything that I saw and what struck me the most was just how passionate, friendly and hard-working the whole team are. Their
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
6 years ago
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The History of BMT
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
BMTInfonet’s video on the history of bone marrow and stem cell transplant. I have always been aware of the Anthony Nolan registry but never knew just what a profound impact it had worldwide. https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant
MFBMT2011
in
MPN Voice
6 years ago
Myelofibrosis & Yransplant Symposium
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
Currently in Denver where Lesley, my better half, and I attended a two day Bone Marrow Transplant Symposium and met fellow survivors. Have pasted my MPNForum Facebook post here to share. Day one at the BMTinfonet symposium in Denver. A couple of hundred present but the Myelofibrosis break out group
MFBMT2011
in
MPN Voice
6 years ago
Worried :( Esmya
I’ve currently been taking Esmya to shrink my fibroid. I’m down to my last weeks worth after 3 months. I’ve just read online that it’s been recalled in the uk due to causing liver damage. That women are meant to be called back monthly for a liver function test ‘ this is the first I’ve heard. No one has
I’ve currently been taking Esmya to shrink my fibroid. I’m down to my last weeks worth after 3 months. I’ve just read online that it’s been recalled in the uk due to causing liver damage. That women are meant to be called back monthly for a liver function test ‘ this is the first I’ve heard. No one has
ICSIBaby86
in
Fertility Network UK
6 years ago
Liver transplant waiting times.
My husband has NASH and HCC. His first liver tumour was treated by RFA. Now he has another one and he has just had TACE treatment and may still need ablation too. Although not assessed for a liver transplant, we've been asking how long the wait is. We're being told three years, is that a normal wait?
My husband has NASH and HCC. His first liver tumour was treated by RFA. Now he has another one and he has just had TACE treatment and may still need ablation too. Although not assessed for a liver transplant, we've been asking how long the wait is. We're being told three years, is that a normal wait?
Remainer
in
British Liver Trust
6 years ago
PIP Claim quesiton
Me again.... So, my “Ernie the Hernia” is causing me soooo much pain (not enough for A&E) but it’s 24/7 now with things it’s restricting me from doing. I’m not moaning as I’m blessed and lucky that my new liver is functioning perfectly. I can’t even grate cheese anymore, lift anything heavy out the
Me again.... So, my “Ernie the Hernia” is causing me soooo much pain (not enough for A&E) but it’s 24/7 now with things it’s restricting me from doing. I’m not moaning as I’m blessed and lucky that my new liver is functioning perfectly. I can’t even grate cheese anymore, lift anything heavy out the
nickiwj
in
British Liver Trust
6 years ago
Pre Assessment question
Hi everyone, I hope your all doing well. As mentioned in my previous post, I have my pre assessment on Tuesday for my incisional hernia operation. Saw Surgeons in February and confirmed my hernia was around 8cm x 8cm and it has got even bigger since then!!! I obvs had the 3 day assessments for my
Hi everyone, I hope your all doing well. As mentioned in my previous post, I have my pre assessment on Tuesday for my incisional hernia operation. Saw Surgeons in February and confirmed my hernia was around 8cm x 8cm and it has got even bigger since then!!! I obvs had the 3 day assessments for my
nickiwj
in
British Liver Trust
6 years ago
Pregnant with DE and now another Missed Miscarriage 😢
I've not posted on here for a while, purely out of worry and not wanting to tempt fate and at least try to get past the 7-8 wk mark, but as the post states, I had my first Doner Egg transfer on 23rd Feb of 2x day 6 blasts after convincing the clinic to let me have a more natural cycle which did work
I've not posted on here for a while, purely out of worry and not wanting to tempt fate and at least try to get past the 7-8 wk mark, but as the post states, I had my first Doner Egg transfer on 23rd Feb of 2x day 6 blasts after convincing the clinic to let me have a more natural cycle which did work
baby2016
in
Fertility Network UK
6 years ago
Chickenpox and immunosuppression
Hi just after some advice regarding chickenpox and immunosuppression. My partner is on immunosuppressants after a kidney transplant. I've read it's dangerous for anyone to be around chickenpox if they are immunosuppressed. My nephew has chickenpox at the moment and there is a family meal arranged for
Hi just after some advice regarding chickenpox and immunosuppression. My partner is on immunosuppressants after a kidney transplant. I've read it's dangerous for anyone to be around chickenpox if they are immunosuppressed. My nephew has chickenpox at the moment and there is a family meal arranged for
bluesgirl37
in
Headway
6 years ago
Transplant Viability
I started showing visible signs of AMN when I was 21 and am currently experiencing a constant, stiff aching pain in my legs from mid thigh down. I was diagnosed last year and the amount of study into my condition by the various health care teams has been admirable. Before the disease started having a
I started showing visible signs of AMN when I was 21 and am currently experiencing a constant, stiff aching pain in my legs from mid thigh down. I was diagnosed last year and the amount of study into my condition by the various health care teams has been admirable. Before the disease started having a
Laird_Mac
in
AMN EASIER
6 years ago
Compensated liver - cirrhosis symptoms 15 months post diagnosis
Hi I'm just after some advice - I was diagnosed with cirrhosis in November 2016 my liver was decompensated upon admission, i had spider novei on my chest (apologies if i've spelt that incorrectly), jaundiced eyes and portal hypertension I did not have ascites but I was put on spirolactone (100mg initially
Hi I'm just after some advice - I was diagnosed with cirrhosis in November 2016 my liver was decompensated upon admission, i had spider novei on my chest (apologies if i've spelt that incorrectly), jaundiced eyes and portal hypertension I did not have ascites but I was put on spirolactone (100mg initially
Nyork10
in
British Liver Trust
6 years ago
Catchment areas
Hi all I was told yesterday by co ordinators that the way your chosen to recieve a possible liver transplant has changed as in that it’s not just your hospitals catchment area but country wide, so for example a liver in say London could well be used in Scotland as it’s only one list, has anyone else
Hi all I was told yesterday by co ordinators that the way your chosen to recieve a possible liver transplant has changed as in that it’s not just your hospitals catchment area but country wide, so for example a liver in say London could well be used in Scotland as it’s only one list, has anyone else
1football
in
British Liver Trust
6 years ago
Pain in hands - advagraf & cellcept
Hi. I'm new to the site. I live in France and had a liver transplant in Paris in June 17. Every thing seems fine at the moment except since the transplant I have pains in my fingers and shoulders. I take advagraf and cellcept. Does anyone else suffer from anything similar?
Hi. I'm new to the site. I live in France and had a liver transplant in Paris in June 17. Every thing seems fine at the moment except since the transplant I have pains in my fingers and shoulders. I take advagraf and cellcept. Does anyone else suffer from anything similar?
Isabelle2
in
British Liver Trust
6 years ago
Ascites post liver transplant
Hi, I’m 5 months post op on Monday and think I’ve got ascites again! I’ve no appetite, severe bloating in my abdomen and the last few days have developed breathlessness. On discharge was able to walk upstairs fine, but am now very breathless by the time I’m at the top. I’m tired, can’t sleep and if
Hi, I’m 5 months post op on Monday and think I’ve got ascites again! I’ve no appetite, severe bloating in my abdomen and the last few days have developed breathlessness. On discharge was able to walk upstairs fine, but am now very breathless by the time I’m at the top. I’m tired, can’t sleep and if
Dawnejoy
in
British Liver Trust
6 years ago
My partner has PBC, just looking for some help, advice and support
My partner has been diagnosed with PBC, first diagnosed around 4 years ago and has been living with it since then. She has been taking Urso for around 3 years but according to the doctor this has not really had any positive effect - the PBC is apparently getting worse and there is now signs of cirrhosis
My partner has been diagnosed with PBC, first diagnosed around 4 years ago and has been living with it since then. She has been taking Urso for around 3 years but according to the doctor this has not really had any positive effect - the PBC is apparently getting worse and there is now signs of cirrhosis
djws
in
PBC Foundation
6 years ago
Newbie
Hello all...I’m a kidney transplant recipient who is really unfit so have committed to doing the C25k and talked my 70 yr old mum into joining in!! I’m v v nervous as I have multiple health issues but since going into the menopause following chemotherapy I’ve just gotten bigger and bigger so REALLY need
Hello all...I’m a kidney transplant recipient who is really unfit so have committed to doing the C25k and talked my 70 yr old mum into joining in!! I’m v v nervous as I have multiple health issues but since going into the menopause following chemotherapy I’ve just gotten bigger and bigger so REALLY need
JLouk
in
Couch to 5K
6 years ago
Update!
Hey guys, Just thought I would give you a update on how my dad got on yesterday in London at this appointment. Dad has got to go back on 19th April to see the whole transplant team. They will do a scan and heart stress test on the same day then will arrange for him to come into hosp for the last
Hey guys, Just thought I would give you a update on how my dad got on yesterday in London at this appointment. Dad has got to go back on 19th April to see the whole transplant team. They will do a scan and heart stress test on the same day then will arrange for him to come into hosp for the last
rpbridgey
in
British Liver Trust
6 years ago
Kidney donation if prediabtic
Kidney transplant. Does anyone k ow if you are prediabtic can you donate a kidney?
Kidney transplant. Does anyone k ow if you are prediabtic can you donate a kidney?
MJ2017
in
Kidney Transplant
6 years ago
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