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Preparations afoot for my stem cell transplant
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
I've finally got dates for my sct. I have a CT scan next week in preparation for radiotherapy to shrink my spleen . That will be followed by 6 days of radiotherapy as an out patient then 24 Jan I get admitted and start chemo. Donor cells getting infused a few days later. I knew all along this was going
Scaredy_cat
in
MPN Voice
2 years ago
protecting against infection
Since I had my kidney transplant 2 years ago during Covid and I’m over 70 years old,I have had to be particularly careful about getting infections. Now that Covid is subsiding and people are going back to normal, I’m not sure how careful I need to continue to be. Before transplant, I had a robust immune
Since I had my kidney transplant 2 years ago during Covid and I’m over 70 years old,I have had to be particularly careful about getting infections. Now that Covid is subsiding and people are going back to normal, I’m not sure how careful I need to continue to be. Before transplant, I had a robust immune
ProudAmma
in
Kidney Transplant
2 years ago
Statins and PBC
I’m male and was diagnosed with PBC 12 years ago. I’m broadly asymptomatic but because of raised cholesterol levels (caused by PBC?) have recently been prescribed statins. I’ve read that statins shouldn’t be taken by anyone with liver disease and wonder if others have experience of this.
I’m male and was diagnosed with PBC 12 years ago. I’m broadly asymptomatic but because of raised cholesterol levels (caused by PBC?) have recently been prescribed statins. I’ve read that statins shouldn’t be taken by anyone with liver disease and wonder if others have experience of this.
CaptainB
in
PBC Foundation
2 years ago
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Update on progress with MF and the FEDORA clinical trial
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
So to recap, I was diagnosed with primary MF in October 2022 and asked to join a new clinical trial called FEDORA. After many tests including a BMB, ultrasound on my abdomen, chest X-ray etc. I started on the pre medication of 400mg/day (in one dose) of Fedratinib in capsule form. This was the first
Flyingsteamer
in
MPN Voice
2 years ago
Happy days
just had a letter re my ultrasound which states that my liver looks a little fatty and there is no sign of any scarring. All my hard workh of dieting exercising and no alcohol has paid off and my appointment in six months will be to discuss if they need to continue with future fibroscans and ultrasounds
just had a letter re my ultrasound which states that my liver looks a little fatty and there is no sign of any scarring. All my hard workh of dieting exercising and no alcohol has paid off and my appointment in six months will be to discuss if they need to continue with future fibroscans and ultrasounds
Hidden
in
British Liver Trust
2 years ago
With my sister in Ireland after labs came back - please help with advice…
Hello everyone, I posted previously - briefly, my sister has had cognitive decline for about two years and was diagnosed with hypothyroidism about four years ago. Her Levo has just been increased on 50 to 75 mcg. She is not on T3 or NDT. (I didn’t know about NDT until I came on this portal). She only
Hello everyone, I posted previously - briefly, my sister has had cognitive decline for about two years and was diagnosed with hypothyroidism about four years ago. Her Levo has just been increased on 50 to 75 mcg. She is not on T3 or NDT. (I didn’t know about NDT until I came on this portal). She only
Butterflycake1
in
Thyroid UK
2 years ago
Preemptive kidney transplant experience and results
Everywhere I read, everyone agrees that a preemptive transplant from a living donor is the best you can hope for when you have stage 5 kidney failure. I would like to hear about your experience if you went through transplant before needing dyalisis. What were your GFR, your BUN and your creatinine
Everywhere I read, everyone agrees that a preemptive transplant from a living donor is the best you can hope for when you have stage 5 kidney failure. I would like to hear about your experience if you went through transplant before needing dyalisis. What were your GFR, your BUN and your creatinine
hope1419
in
Kidney Transplant
2 years ago
Should Alcohol Get a Worse Rap?
A bit out of the usual line of comment or 1uestion. Having never been a drinker ( can't stand the taste of it) I've always been bemused at what a big role alcohol plays in society. It's seen as a key aspects of most of life's big events, as well as being important as location of a social event, as a
A bit out of the usual line of comment or 1uestion. Having never been a drinker ( can't stand the taste of it) I've always been bemused at what a big role alcohol plays in society. It's seen as a key aspects of most of life's big events, as well as being important as location of a social event, as a
Walt1010
in
British Liver Trust
2 years ago
Sudden rise in Tacrolimus
I received a kidney transplant in July 2021. Everything has gone swimmingly. I caught a mild case of Covid at the end of July and received a multiclonal antibody infusion. When I went for my August bloodwork, my Tacrolimus trough, which had been running 5-7, was suddenly 9.6. When I did my bloodwork
I received a kidney transplant in July 2021. Everything has gone swimmingly. I caught a mild case of Covid at the end of July and received a multiclonal antibody infusion. When I went for my August bloodwork, my Tacrolimus trough, which had been running 5-7, was suddenly 9.6. When I did my bloodwork
ILMA54
in
Kidney Transplant
2 years ago
A Simple explanation of the inaccuracies of eGFR
Please note I don’t condone what they are preaching just hope this better explains why, as so many have wondered. Estimated GFR: time for a critical appraisalEsteban Porrini et al. Nat Rev Nephrol. 2019 Mar. Show details Abstract PubMed PMID Full text linksCiteErratum inAuthor Correction
Please note I don’t condone what they are preaching just hope this better explains why, as so many have wondered. Estimated GFR: time for a critical appraisalEsteban Porrini et al. Nat Rev Nephrol. 2019 Mar. Show details Abstract PubMed PMID Full text linksCiteErratum inAuthor Correction
Blackknight1989
in
Kidney Disease
2 years ago
Amlodipine Side Effects, short and long term
I am on 10mg amlodipine (this dosage was prescribed right off the bat) several years ago, to be taken with 100mg labetalol twice a day. I felt terrible at first but better now, though frequently tired. I'm wondering if these meds are too much and the cause of my fatigue (I am 69 y.o.) I am also being
I am on 10mg amlodipine (this dosage was prescribed right off the bat) several years ago, to be taken with 100mg labetalol twice a day. I felt terrible at first but better now, though frequently tired. I'm wondering if these meds are too much and the cause of my fatigue (I am 69 y.o.) I am also being
Cats8019
in
High Blood Pressure Support
2 years ago
Cirrhosis
Hello everyone. My husband has been diagnosed with cirrhosis. He was admitted into the ICU due to jaundice and liver blood tests being out of control, on August 12. He spent a week in there. He has not had a drink since then and has said he will never drink again. While in the hospital, we were
Hello everyone. My husband has been diagnosed with cirrhosis. He was admitted into the ICU due to jaundice and liver blood tests being out of control, on August 12. He spent a week in there. He has not had a drink since then and has said he will never drink again. While in the hospital, we were
Mls1973
in
British Liver Trust
2 years ago
Anxiety Advice
Hi, I've always been prone to low grade depression, but had never suffered from anxiety until i tried to come off Paroxetine (Seroxat) in 2013, having been on it for a number of years. Even though i weaned myself off slowly over 18 months the anxiety was severe and eventually i gave up, went back on
Hi, I've always been prone to low grade depression, but had never suffered from anxiety until i tried to come off Paroxetine (Seroxat) in 2013, having been on it for a number of years. Even though i weaned myself off slowly over 18 months the anxiety was severe and eventually i gave up, went back on
Judthepud
in
Anxiety Support
2 years ago
transplant and covid
hi all. My 23 year old son is currently awaiting a kidney transplant. His team as informed him that he has to have the Covid vaccine before his surgery. Has this happened to anyone? He is scared to get the vaccine ! Any input would be amazing!!
hi all. My 23 year old son is currently awaiting a kidney transplant. His team as informed him that he has to have the Covid vaccine before his surgery. Has this happened to anyone? He is scared to get the vaccine ! Any input would be amazing!!
Boymommm
in
Kidney Transplant
2 years ago
specifically about DCD livers
I should start by saying my partner has some anxiety regarding medical issues and has been quite worried since being listed recently- I had asked before about various liver types. Is there anyone here who has received a DCD liver and can let me know the experience. He is very grateful to be offered
I should start by saying my partner has some anxiety regarding medical issues and has been quite worried since being listed recently- I had asked before about various liver types. Is there anyone here who has received a DCD liver and can let me know the experience. He is very grateful to be offered
Rshc
in
British Liver Trust
2 years ago
Transplant Journey outcomes/advice anyone?
Hi, I have had CKD for several years and declined dramatically over the last 6mths -1yr and was actually started urgently on dialysis in July when my GFR dropped to 3 and creatine was 12.43. I had already had a consult and was added to a wait list for kidney transplant in early February of this year.
Hi, I have had CKD for several years and declined dramatically over the last 6mths -1yr and was actually started urgently on dialysis in July when my GFR dropped to 3 and creatine was 12.43. I had already had a consult and was added to a wait list for kidney transplant in early February of this year.
Hawaiilover
in
Kidney Disease
2 years ago
Cirossis stage 4
my husband has very bad ascites they drained 9 litres out of him he is now full of ascites again he is very uncomfortable having a hard time breathing and sleeping I noticed he is getting more forgetful and his motor skills are declining he also has bad diarrhea and his urine is very dark his docter
my husband has very bad ascites they drained 9 litres out of him he is now full of ascites again he is very uncomfortable having a hard time breathing and sleeping I noticed he is getting more forgetful and his motor skills are declining he also has bad diarrhea and his urine is very dark his docter
Grizz11
in
British Liver Trust
2 years ago
After 15 + months on the transplant list, I've had my transplant!
Just letting the forum know of my change of status. On my second call to QE, Birmingham, there was an instantly more positive vibe about the possible transplant, and the operation took place about 12 hours after arriving at QE on 24/9/22. Surgeons very pleased with outcome. I have been in little-
Just letting the forum know of my change of status. On my second call to QE, Birmingham, there was an instantly more positive vibe about the possible transplant, and the operation took place about 12 hours after arriving at QE on 24/9/22. Surgeons very pleased with outcome. I have been in little-
taar
in
British Liver Trust
2 years ago
Liver cirrhosis
Hi all, Long story short my farther has liver cirrhosis caused by excessive alcohol which was diagnosed some years ago. Unfortunately he will not discuss it and has said in the past some bizzare stuff about it being misdiagnosed that it’s only 0.01% damaged and so on. It’s blatantly clear he has
Hi all, Long story short my farther has liver cirrhosis caused by excessive alcohol which was diagnosed some years ago. Unfortunately he will not discuss it and has said in the past some bizzare stuff about it being misdiagnosed that it’s only 0.01% damaged and so on. It’s blatantly clear he has
Hidden
in
British Liver Trust
2 years ago
Desserts
does any know if desserts are all right to eat with a de compensated liver i have one every night custard choc bun - sweet cakes, read something about there not that good for your the sugar levels in them don't want to waste the hard work i put in with low salt diet every night
does any know if desserts are all right to eat with a de compensated liver i have one every night custard choc bun - sweet cakes, read something about there not that good for your the sugar levels in them don't want to waste the hard work i put in with low salt diet every night
lonmallin50
in
British Liver Trust
2 years ago
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