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Pulmonary Hypertension
I’ve just returned from a pre lung transplant check up at Harefield. Last seen in November when all was ok except pulmonary hypertension was noted. The pressure was 40 mm of mercury. Normal is 25. They weren’t too bothered as walking to the room could have raised it. However today I needed a wheel chair
I’ve just returned from a pre lung transplant check up at Harefield. Last seen in November when all was ok except pulmonary hypertension was noted. The pressure was 40 mm of mercury. Normal is 25. They weren’t too bothered as walking to the room could have raised it. However today I needed a wheel chair
mary1956
in
Lung Conditions Community Forum
2 years ago
New on transplant list.
After years of slowly decreasing kidney function, I was recently listed for kidney transplant.
After years of slowly decreasing kidney function, I was recently listed for kidney transplant.
6V53
in
Kidney Transplant
2 years ago
Cord blood donation Northern Ireland
Does anyone know much about this? I’m very early on in pregnancy but heard about this years ago when beother in law had to have a stem cell transplant. I’m not sure if it’s available in Northern Ireland. Does it have to be donated or can it be froze for possible future use for child?
Does anyone know much about this? I’m very early on in pregnancy but heard about this years ago when beother in law had to have a stem cell transplant. I’m not sure if it’s available in Northern Ireland. Does it have to be donated or can it be froze for possible future use for child?
Babytwinkle
in
Pregnancy and Parenting Support
2 years ago
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Rejected for liver transplant
This morning my partner was advised by the Royal free liver transplant assessment unit that he had been rejected for a liver transplant. This was on the basis of false information. The drug and alcohol nurse had advised that he was unwilling to allow RF to access his data from the drug and alcohol support
This morning my partner was advised by the Royal free liver transplant assessment unit that he had been rejected for a liver transplant. This was on the basis of false information. The drug and alcohol nurse had advised that he was unwilling to allow RF to access his data from the drug and alcohol support
Naomi425
in
British Liver Trust
2 years ago
WARWICK's Latest Update on his POST ASCT journey thus far...
Post by MPN-MATE Admin » Sat Feb 12, 2022 10:39 pm Evening all... :D As some of you may recall, sometime ago in 2021, Warwick, (one of our committee members), underwent his Allogenic Stem Cell Transplant (ASCT) journey. While his condition is deemed a success, the journey itself remains ongoing w/
Post by MPN-MATE Admin » Sat Feb 12, 2022 10:39 pm Evening all... :D As some of you may recall, sometime ago in 2021, Warwick, (one of our committee members), underwent his Allogenic Stem Cell Transplant (ASCT) journey. While his condition is deemed a success, the journey itself remains ongoing w/
socrates_8
in
MPN Voice
2 years ago
Don’t know how much more I can take!
Don’t know how much more I can take, Not Liver related just needed to talk to someone who’s not involved. As a few of you know my Hubby was diagnosed in December with cirrhosis after many months of uncertainty being told it could be serval different cancers. Then in January I get told I am heading for
Don’t know how much more I can take, Not Liver related just needed to talk to someone who’s not involved. As a few of you know my Hubby was diagnosed in December with cirrhosis after many months of uncertainty being told it could be serval different cancers. Then in January I get told I am heading for
Dobielove
in
British Liver Trust
2 years ago
10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
lankisterguy
Volunteer
in
CLL Support
2 years ago
My husband has a bad rash
Hi everyone I haven't posted for a while but always read others. My husband (64) had NASH cirrhosis and had a liver transplant in 2017, when they also found he had cancer of the liver. His new liver now has fatty deposits as his Diabetes seems out of control. He is trying a new diet and hopefully
Hi everyone I haven't posted for a while but always read others. My husband (64) had NASH cirrhosis and had a liver transplant in 2017, when they also found he had cancer of the liver. His new liver now has fatty deposits as his Diabetes seems out of control. He is trying a new diet and hopefully
Kimlescam
in
British Liver Trust
2 years ago
Massive setback…😡😢😡😢😡😢
Just got word from the transplant team that they now consider me too high a risk for a double lung transplant. As some of you may remember the assessment work up flagged up a calcification build up in a heart vessel ( LAD) which needed sorting. I subsequently went to the Harefield for angioplasty and
Just got word from the transplant team that they now consider me too high a risk for a double lung transplant. As some of you may remember the assessment work up flagged up a calcification build up in a heart vessel ( LAD) which needed sorting. I subsequently went to the Harefield for angioplasty and
Mrbojangles
in
Lung Conditions Community Forum
2 years ago
The Kidney Project
https://www.youtube.com/watch?v=zZZyE67VU5o&t=2742s In this video it highlights the process and updates of implantable bioartificial kidney by The Kidney Project Summary -They managed to test a miniature device and have tested it on animals producing urine to show that it works and is safe. -They still
https://www.youtube.com/watch?v=zZZyE67VU5o&t=2742s In this video it highlights the process and updates of implantable bioartificial kidney by The Kidney Project Summary -They managed to test a miniature device and have tested it on animals producing urine to show that it works and is safe. -They still
Tony_Mimicted
in
Kidney Disease
2 years ago
Options for PBC Itch?
Hello, I have had PBC for years with progressive itch. I am an "incomplete" responder to Urso and Ocaliva (on both). I take Cholestyramine but in the past year the itching has gotten significantly worse where I scratch all night, am scaring up my arms and legs and tear the dead dry skin off the soles
Hello, I have had PBC for years with progressive itch. I am an "incomplete" responder to Urso and Ocaliva (on both). I take Cholestyramine but in the past year the itching has gotten significantly worse where I scratch all night, am scaring up my arms and legs and tear the dead dry skin off the soles
Q8Cooper
in
PBC Foundation
2 years ago
Transplant Assessment over and out (almost)
After having to postpone my previous appointment due to a dubious positive PCR test, I finally had my lung transplant assessment on Monday and Tuesday this week. Having read the booklet that they sent in advance, I had a fair idea of what was involved but still don't think I was fully prepared for the
After having to postpone my previous appointment due to a dubious positive PCR test, I finally had my lung transplant assessment on Monday and Tuesday this week. Having read the booklet that they sent in advance, I had a fair idea of what was involved but still don't think I was fully prepared for the
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
Holiday Insurance
Hello, I am looking to get holiday insurance to Greece following a liver transplant in September 2020. I have contacted a number of recommended insurers and am shocked at the variation in price for similar cover. For a 10 day cover, this has ranged from £550 to £1300! I am happy to give anyone who is
Hello, I am looking to get holiday insurance to Greece following a liver transplant in September 2020. I have contacted a number of recommended insurers and am shocked at the variation in price for similar cover. For a 10 day cover, this has ranged from £550 to £1300! I am happy to give anyone who is
Chasdog
in
British Liver Trust
2 years ago
To do KT or not?
To those of you that has had a kidney transplant, do you think it is worth to do it, given all the possible complications and the high risk of developing cancer by taking immunosuppressants ? I am contemplating on undergoing pre- emptive KT but with of these possibilities , I am so nervous. Thanks
To those of you that has had a kidney transplant, do you think it is worth to do it, given all the possible complications and the high risk of developing cancer by taking immunosuppressants ? I am contemplating on undergoing pre- emptive KT but with of these possibilities , I am so nervous. Thanks
Dina0210
in
Kidney Disease
2 years ago
Severe, 45-minute long leg cramps
When I'm falling asleep, I get terrible leg cramps where both the extending and the contracting leg muscles freeze for about 45 min. until my muscles "remember" where they belong. And then and only then I can put my foot on the floor. I'm scheduled for a kidney transplant and hoping that the cramps will
When I'm falling asleep, I get terrible leg cramps where both the extending and the contracting leg muscles freeze for about 45 min. until my muscles "remember" where they belong. And then and only then I can put my foot on the floor. I'm scheduled for a kidney transplant and hoping that the cramps will
PurpleKatisha
in
Kidney Disease
2 years ago
Life expectancy with MF
Hello, all. I was diagnosed with post ET MF in 2019, after having been diagnosed with ET jak 2 in 2008. In 2019, I had my second BMB where it was confirmed I had progressed to MF, intermediate 1. I had a third BMB last September to determine whether I was a candidate for a bone marrow transplant. At
Hello, all. I was diagnosed with post ET MF in 2019, after having been diagnosed with ET jak 2 in 2008. In 2019, I had my second BMB where it was confirmed I had progressed to MF, intermediate 1. I had a third BMB last September to determine whether I was a candidate for a bone marrow transplant. At
Cja1956
in
MPN Voice
2 years ago
Covid safety rules to stop !
Had enough now ! feel like myself as RA Imunecompromised and my husband severe Immunecompromised Kidney transplant will never get our life back or be safe ! Boris knows there are still vulnerable and exstremely vulnerable people they are a disgrace and act as if everyone is ok !!!
Had enough now ! feel like myself as RA Imunecompromised and my husband severe Immunecompromised Kidney transplant will never get our life back or be safe ! Boris knows there are still vulnerable and exstremely vulnerable people they are a disgrace and act as if everyone is ok !!!
trace58
in
NRAS
2 years ago
Happy to be here!
With everything that's been going on with my lung disease over the past few years, I often forget just how fortunate I am to still be here. In September 2003 I was diagnosed with chronic myeloid leukaemia at the age of 18. I was totally blindsided and the future looked bleak. The amazing treatments
With everything that's been going on with my lung disease over the past few years, I often forget just how fortunate I am to still be here. In September 2003 I was diagnosed with chronic myeloid leukaemia at the age of 18. I was totally blindsided and the future looked bleak. The amazing treatments
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
Losing weight while on steroids
Hi all , I had a lung transplant 5 years ago and have been on dual anti rejection meds of prednisolone and cyclosporin. I'm on 8mg of steroids daily I also have gastropharesis. I have put 3 stone on in 3 years and my consultant has told me I am to lose weight as its putting pressure on my only one
Hi all , I had a lung transplant 5 years ago and have been on dual anti rejection meds of prednisolone and cyclosporin. I'm on 8mg of steroids daily I also have gastropharesis. I have put 3 stone on in 3 years and my consultant has told me I am to lose weight as its putting pressure on my only one
Hidden
in
Lung Conditions Community Forum
2 years ago
Help for my sister
My sister is on the transplant list in Birmingham, AL but every live donor who has came forward has been rejected and she hasn't received one call from the Transplant Center for a deceased donor. My 3 brothers and I all have received deceased donor kidney transplants but live in KY. My sister will
My sister is on the transplant list in Birmingham, AL but every live donor who has came forward has been rejected and she hasn't received one call from the Transplant Center for a deceased donor. My 3 brothers and I all have received deceased donor kidney transplants but live in KY. My sister will
bowlingpkd
in
Kidney Transplant
2 years ago
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