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Islet cell transplant
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Nintedanib
Hi, I am absolutely useless with technology…… I wrote a lengthy update about myself, this drug, other drugs, hospital stay, decline of lung transplant at Harefield, referral to palliative care, oxygen - sorry goes on and on, just wanted to share the year’s overall experience. I can’t find the update
Hi, I am absolutely useless with technology…… I wrote a lengthy update about myself, this drug, other drugs, hospital stay, decline of lung transplant at Harefield, referral to palliative care, oxygen - sorry goes on and on, just wanted to share the year’s overall experience. I can’t find the update
Bonchops10
in
Living with Interstitial Lung Disease (ILD)
8 months ago
Hi... was blessed to have a kidney transplant 6 weeks ago... anyone eve struggle with the meds?
So thankful for a working kidney and the blessing of a Living donor.... but the meds have been almost more than I can handle. And the toll they are taking on my body is immense. Can anyone tell me their experience with all these meds and how they worked through and held on through recovery. I am 6
So thankful for a working kidney and the blessing of a Living donor.... but the meds have been almost more than I can handle. And the toll they are taking on my body is immense. Can anyone tell me their experience with all these meds and how they worked through and held on through recovery. I am 6
Highgfr
in
Kidney Disease
8 months ago
Shingrix vaccine for immunosuppressed people aged 50+
I thought I would just post this from the gov.uk website because I have just a bit of struggle convincing our surgery that I was eligible, so maybe other people haven't been invited either. The full list is on chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://assets.publishing.service.gov.uk
I thought I would just post this from the gov.uk website because I have just a bit of struggle convincing our surgery that I was eligible, so maybe other people haven't been invited either. The full list is on chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://assets.publishing.service.gov.uk
Sharitone
in
PMRGCAuk
8 months ago
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liver gal
I have had a liver transplant June 29, 2023 and the hair loss won’t stop? And info on will it stop?!
I have had a liver transplant June 29, 2023 and the hair loss won’t stop? And info on will it stop?!
Livergal
in
British Liver Trust
8 months ago
Dilated Cardiomyopathy/ Heart Transplant
I was diagnosed with Dilated Cardiomyopathy in November 2022 after suffering shortness of breath and always being tired and breathless. I quickly deteriorated and when I went back to see my Cardiologist in January I was told I was now critical and needed to be admitted and put on the urgent transplant
I was diagnosed with Dilated Cardiomyopathy in November 2022 after suffering shortness of breath and always being tired and breathless. I quickly deteriorated and when I went back to see my Cardiologist in January I was told I was now critical and needed to be admitted and put on the urgent transplant
Jobby85
in
British Heart Foundation
8 months ago
Diagnosis at last! Haemochromotosis?
I've posted a few times on this forum but a bit of backstory - hubby, 43 had sudden onset of upper right quadrant pain last December, has some tests for gallstones, found nothing, immediately stopped drinking (had drunk heavily for around 15 years), and after a lot of back and forward was found to have
I've posted a few times on this forum but a bit of backstory - hubby, 43 had sudden onset of upper right quadrant pain last December, has some tests for gallstones, found nothing, immediately stopped drinking (had drunk heavily for around 15 years), and after a lot of back and forward was found to have
RugbyMama
in
British Liver Trust
8 months ago
RA and live flu vaccine
HiMy daughter has rung to say my 2 year old grandson has just had a live flu vaccine. She said the GP has said to avoid people with very compromised immune systems, eg. they said, having bone marrow transplants, for a week. She asked if it was safe for them to see me and was told they had no guidance
HiMy daughter has rung to say my 2 year old grandson has just had a live flu vaccine. She said the GP has said to avoid people with very compromised immune systems, eg. they said, having bone marrow transplants, for a week. She asked if it was safe for them to see me and was told they had no guidance
Julia31
in
NRAS
9 months ago
Post stem cell transplant vaccinations
Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines next week. Just worried about reactions etc and it not being in the safety of the hospital.
Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines next week. Just worried about reactions etc and it not being in the safety of the hospital.
Platelets2022
in
Leukaemia Support
9 months ago
just advice support
I don’t really know what I want from this post only that it’s nearly 2am and I feel completely broken and wanted to put it down somewhere. I feel like I am breaking and I don’t want to upset anyone else with my worries, because they are worrying to and I don’t want sympathy from people I love because
I don’t really know what I want from this post only that it’s nearly 2am and I feel completely broken and wanted to put it down somewhere. I feel like I am breaking and I don’t want to upset anyone else with my worries, because they are worrying to and I don’t want sympathy from people I love because
Helpplease_
in
ICUsteps
9 months ago
Lympahdinitis
Lymphdinitis in neck in kidney transplant patient..in FAnc reporr No TB detected or cancer only it says
Necrotizing Lympahdinitis
.. .after taking antibiotic and antinflameter ..for 8 days it reduce ..the size of lymph node ..but no it again increased and further on e another arise up..plz
Lymphdinitis in neck in kidney transplant patient..in FAnc reporr No TB detected or cancer only it says
Necrotizing Lympahdinitis
.. .after taking antibiotic and antinflameter ..for 8 days it reduce ..the size of lymph node ..but no it again increased and further on e another arise up..plz
bal_123
in
Kidney Transplant Patient Support
9 months ago
Life after Tocilizumab?
I've been off steroids since mid-May. Continuing to take methotrexate (15mg weekly) and Toxilizumab weekly. I seem to be doing well - bloods fine and health ok. I'm seeing rheumatologist next week and my concern is I'm guessing that I won't be eligible for further Tox after my current prescription runs
I've been off steroids since mid-May. Continuing to take methotrexate (15mg weekly) and Toxilizumab weekly. I seem to be doing well - bloods fine and health ok. I'm seeing rheumatologist next week and my concern is I'm guessing that I won't be eligible for further Tox after my current prescription runs
tweety_pie
in
PMRGCAuk
4 days ago
Tocilizumab
I am advised that a biosimilar to tocilizumab has been approved in the UK and will be available at a more economical price , enabling NICE to allow NHS prescriptions for GCA after the initial 12 months. My GP and Consultant keen to get me off Pred altogether ( currently on second attempt in 3 years)
I am advised that a biosimilar to tocilizumab has been approved in the UK and will be available at a more economical price , enabling NICE to allow NHS prescriptions for GCA after the initial 12 months. My GP and Consultant keen to get me off Pred altogether ( currently on second attempt in 3 years)
Niblick
in
PMRGCAuk
12 days ago
Colonoscopy
Just have a question. I was put on a 5 Day taper of 16mg of prednisolone. I took my first dose today along with a one time dose of diflucan. Will I be ok to have my colonoscopy tomorrow?
Just have a question. I was put on a 5 Day taper of 16mg of prednisolone. I took my first dose today along with a one time dose of diflucan. Will I be ok to have my colonoscopy tomorrow?
Babciboys
in
PMRGCAuk
16 days ago
Returning temporal headaches after stopping Tocilizumab, what to do ?
I will try to be brief. UK male aged 70 Diagnosed with GCA (ultra sound scan only) 2 years ago. Only minor symptoms experienced (mainly temporal headache). 65mg Prednisolone prescribed daily for 2 weeks, then to reduce by 5mg per month. A couple of "flares" (just headaches) in the following 12 months
I will try to be brief. UK male aged 70 Diagnosed with GCA (ultra sound scan only) 2 years ago. Only minor symptoms experienced (mainly temporal headache). 65mg Prednisolone prescribed daily for 2 weeks, then to reduce by 5mg per month. A couple of "flares" (just headaches) in the following 12 months
ghost123uk
in
PMRGCAuk
1 month ago
Neutropenia whilst on Tocilizumab
Hi. Just wondering if anyone has had a similar experience. Diagnosed with PMR and GCA Nov. 2021. For last 2 months I have been on weekly Tocilizumab injections; this followed a further flare up in December 2023 when the entire aorta was inflamed (I have never had cranial symptoms). I was certainly shocked
Hi. Just wondering if anyone has had a similar experience. Diagnosed with PMR and GCA Nov. 2021. For last 2 months I have been on weekly Tocilizumab injections; this followed a further flare up in December 2023 when the entire aorta was inflamed (I have never had cranial symptoms). I was certainly shocked
Magsters123
in
PMRGCAuk
1 month ago
Qualifying for Tocilizumab
Hello, I have had a relapse of GCA and have been put on a reduction plan. Was on 40mg pred now reducing by 10mg every two weeks. I had an emergency ultrasound of temporal and axillary arteries but it was three weeks after going on 40mg of pred so my consultant radiologist did say that nothing would
Hello, I have had a relapse of GCA and have been put on a reduction plan. Was on 40mg pred now reducing by 10mg every two weeks. I had an emergency ultrasound of temporal and axillary arteries but it was three weeks after going on 40mg of pred so my consultant radiologist did say that nothing would
Golfers1
in
PMRGCAuk
1 month ago
Lee75glom
I currently am undergoing evaluation for a kidney transplant a major transplantation center, Perelman Center for Advanced Medicine. I passed the first stage by the transplant committee. I am wondering about how patients who have received a kidney transplant deal with transportation to their center
I currently am undergoing evaluation for a kidney transplant a major transplantation center, Perelman Center for Advanced Medicine. I passed the first stage by the transplant committee. I am wondering about how patients who have received a kidney transplant deal with transportation to their center
Lee75glom
in
Kidney Transplant
9 months ago
October 15, 1999 - 2023
I am now 24 years out from my kidney transplant. I remember it as if it were yesterday! Getting the "call" at 2:30 AM and having to be at transplant center by 5:30...and then not taken to surgery till 3:00 PM. Had a lot of time to "stress out". Picture is of me hiking in Arches National Park in September
I am now 24 years out from my kidney transplant. I remember it as if it were yesterday! Getting the "call" at 2:30 AM and having to be at transplant center by 5:30...and then not taken to surgery till 3:00 PM. Had a lot of time to "stress out". Picture is of me hiking in Arches National Park in September
WYOAnne
NKF Ambassador
in
Kidney Disease
9 months ago
new transplant
I am new to this sight. Just want to say I am feeling incredibly grateful for my kidney transplant that occurred on Oct 4. My daughter was my donor and we were both released 2 days later. I was the first robot assisted kidney transplant at Mayo Clinic. I have to say it was fantastic. I have about a 2
I am new to this sight. Just want to say I am feeling incredibly grateful for my kidney transplant that occurred on Oct 4. My daughter was my donor and we were both released 2 days later. I was the first robot assisted kidney transplant at Mayo Clinic. I have to say it was fantastic. I have about a 2
Pjpanning
in
Kidney Transplant
9 months ago
Likelihood of liver transplantation
Hello everyone, hoping you can provide your experience and knowledge to help guide us. Our dad (57) has been a heavy drinker for the past 25 years, was always in denial and refused any help until he became hospitalised at the start of this year. He had developed severe ascites requiring drainage, has
Hello everyone, hoping you can provide your experience and knowledge to help guide us. Our dad (57) has been a heavy drinker for the past 25 years, was always in denial and refused any help until he became hospitalised at the start of this year. He had developed severe ascites requiring drainage, has
GranolaLover87
in
British Liver Trust
9 months ago
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