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Introduction of myself, PMF, from China
Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not so high all the time. These symptoms began to happen to me one after another as early as 2013. JAK2V617F gene mutation, there is only one mutation
Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not so high all the time. These symptoms began to happen to me one after another as early as 2013. JAK2V617F gene mutation, there is only one mutation
merlisa
in
MPN Voice
3 years ago
Major hair loss
I too am having major hair loss after receiving a kidney /
pancreas
transplant
. its super depressing and I am having a major breakdown over it. currently am using biotin 5000 milligrams. Hoping it helps!
I too am having major hair loss after receiving a kidney /
pancreas
transplant
. its super depressing and I am having a major breakdown over it. currently am using biotin 5000 milligrams. Hoping it helps!
Moe37
in
Kidney Transplant
3 years ago
John Hopkins Medicine organ transplant/covid vaccine study results in mid March2021:few if any antibodies made
Curious if your transplant clinic or nephrologist contacted you about getting the covid vaccine. My spouse was told to get the Pfizer if he could get his hands on it where we live and he did and had both shots without problems. Mid March 2021 a study from John Hopkins medicine came out showing volunteers
Curious if your transplant clinic or nephrologist contacted you about getting the covid vaccine. My spouse was told to get the Pfizer if he could get his hands on it where we live and he did and had both shots without problems. Mid March 2021 a study from John Hopkins medicine came out showing volunteers
Gardner-NY
in
Kidney Transplant
3 years ago
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scared appreciate any help
I Have had a form of rls all my life. I got kidney failure and while on dialisis for 5 years all the meds that I was normal on I became worse on (requip and believe it or not prozac ) and xanax and oxycontin cause of severe nerve damage from spinal cord issue from birth that was not found til i was
I Have had a form of rls all my life. I got kidney failure and while on dialisis for 5 years all the meds that I was normal on I became worse on (requip and believe it or not prozac ) and xanax and oxycontin cause of severe nerve damage from spinal cord issue from birth that was not found til i was
ESRDRLS
in
Restless Legs Syndrome
3 years ago
Denied Transplant due to Calcification. Need help.
I have a friend that has been denied a 2nd kidney transplant b/c they say his arteries have calcification over them. They are unable to put it on the left side where the first transplant was, and as I said, the other side has calcification so he was denied. He's looking for a hospital that can do
I have a friend that has been denied a 2nd kidney transplant b/c they say his arteries have calcification over them. They are unable to put it on the left side where the first transplant was, and as I said, the other side has calcification so he was denied. He's looking for a hospital that can do
Helpingfriend
in
Kidney Transplant
3 years ago
Anxiety and Depression - cont
Just to continue on the subject of Anxiety and Depression that I posted up earlier. I thought I’d add this snippet of news about a forthcoming online course from the people at “FutureLearn”. Like others on here, I too completed the two liver subject courses run on “FutureLearn” by the University of
Just to continue on the subject of Anxiety and Depression that I posted up earlier. I thought I’d add this snippet of news about a forthcoming online course from the people at “FutureLearn”. Like others on here, I too completed the two liver subject courses run on “FutureLearn” by the University of
Richard-Allen
in
British Liver Trust
3 years ago
Probably the greatest dilemma of my life.
Currently going through double lung transplant assessments due to IPF.One strict no go which strikes you off the list is cancer as , quite rightly, donated healthy lungs should go to those who have a longer chance of survival . Now the dilemma... discovered a great lump in my neck which may or may not
Currently going through double lung transplant assessments due to IPF.One strict no go which strikes you off the list is cancer as , quite rightly, donated healthy lungs should go to those who have a longer chance of survival . Now the dilemma... discovered a great lump in my neck which may or may not
Mrbojangles
in
Lung Conditions Community Forum
3 years ago
Recently diagnosed with MF
Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this treatment and if so any suggestions? I have a potential sibling match which is currently being investigated. Given the recent diagnosis still taking
Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this treatment and if so any suggestions? I have a potential sibling match which is currently being investigated. Given the recent diagnosis still taking
67Red
in
MPN Voice
3 years ago
Weigh-in Saturday for me
Well, did my weekly weigh-in today have yet to start my Med diet or quitting smoking and getting rid of sugar out of my diet. I will begin officially on 1 May as of so far 3 hours up and no smoking (using Chantix). Bout a ton of seafood but that which is approved by a Mediterranean diet, trying my best
Well, did my weekly weigh-in today have yet to start my Med diet or quitting smoking and getting rid of sugar out of my diet. I will begin officially on 1 May as of so far 3 hours up and no smoking (using Chantix). Bout a ton of seafood but that which is approved by a Mediterranean diet, trying my best
utep99
in
Weight Loss Support
3 years ago
Harefield Lung Transplant
Hi, I am on the lung transplant list at QE Hospital Birmingham, but surgery there is still suspended and will be until June at the earliest. I am therefore going to be seen at Harefield in the hope I can go on their list. I’ve been on Birmingham’s list since July, but with no transplants since January
Hi, I am on the lung transplant list at QE Hospital Birmingham, but surgery there is still suspended and will be until June at the earliest. I am therefore going to be seen at Harefield in the hope I can go on their list. I’ve been on Birmingham’s list since July, but with no transplants since January
mary1956
in
Lung Conditions Community Forum
3 years ago
I’m here to help and support
Hi everyone! I’m a live kidney transplant recipient - on Valentine’s Day 2019. Glad to help anyone who would like general information or suggestions on finding a live donor or have questions about my transplant procedure, recovery, etc.
Hi everyone! I’m a live kidney transplant recipient - on Valentine’s Day 2019. Glad to help anyone who would like general information or suggestions on finding a live donor or have questions about my transplant procedure, recovery, etc.
NKFcommunity
in
Finding a Living Donor: From Home
3 years ago
Good news for those suffering from heart failure, you CAN recover, I DID, thanks God.
First sorry for long post but it could be really helpful to those with heart failure. Nov 2019 ejection fraction at 15% , Mitral valve regurgitations (means not even pumping the 15% out correctly!), Got steadily worse, movement severely restricted, 80-year-old man fitter than me..and i was very fit
First sorry for long post but it could be really helpful to those with heart failure. Nov 2019 ejection fraction at 15% , Mitral valve regurgitations (means not even pumping the 15% out correctly!), Got steadily worse, movement severely restricted, 80-year-old man fitter than me..and i was very fit
hf54
in
British Heart Foundation
3 years ago
Liver + Kidney Transplant + Nephrectomy is Terrifying
I have learned that I am most likely facing a liver and kidney transplant in the very near future due to my PKD. This will include a nephrectomy. This surgery is rather terrifying to me as it is so huge. Has anyone had experience with this same surgery?
I have learned that I am most likely facing a liver and kidney transplant in the very near future due to my PKD. This will include a nephrectomy. This surgery is rather terrifying to me as it is so huge. Has anyone had experience with this same surgery?
BeachLove
in
Kidney Transplant
3 years ago
mpal leukaemia
Hi Would really love to hear from anyone who has experience with this rare type of leukaemia. My son was diagnosed in December 2020 and is about to undergo a bone marrow transplant
Hi Would really love to hear from anyone who has experience with this rare type of leukaemia. My son was diagnosed in December 2020 and is about to undergo a bone marrow transplant
su0906
in
Leukaemia Support
3 years ago
“I think we’ll cure leukemia in my lifetime”
“Is there anything else you’d like to share about leukemia treatment? I'm very excited because I think we’ll cure leukemia in my lifetime. We’ve already come so far. For example, before 2000, patients with Philadelphia chromosome-positive acute lymphoblastic leukemia had a survival rate of 10%. Targeted
“Is there anything else you’d like to share about leukemia treatment? I'm very excited because I think we’ll cure leukemia in my lifetime. We’ve already come so far. For example, before 2000, patients with Philadelphia chromosome-positive acute lymphoblastic leukemia had a survival rate of 10%. Targeted
Manouche
in
MPN Voice
3 years ago
Lung transplant list
So today I learned my lung transplant journey has come to an end. My body has failed me whilst my mind is still breakdancing. An osteoporotic fracture in my spine is one risk too many for me to receive the gift of new lungs - it was going to be an already high risk operation due to my many complications
So today I learned my lung transplant journey has come to an end. My body has failed me whilst my mind is still breakdancing. An osteoporotic fracture in my spine is one risk too many for me to receive the gift of new lungs - it was going to be an already high risk operation due to my many complications
Joseph260268
in
Lung Conditions Community Forum
3 years ago
THINING SKIN AFTER KIDNEY TRANSPLANT
I have extremely thin skin since my transplant 17 months ago. I am still on high dosages of cellcept due to rejection issues. My arms, in particular, bruise very easily. Just scratching my arms will leave red marks that take weeks to disappear. I use Cera Ve moisturizer 2x a day and Eucerin Moisturizer
I have extremely thin skin since my transplant 17 months ago. I am still on high dosages of cellcept due to rejection issues. My arms, in particular, bruise very easily. Just scratching my arms will leave red marks that take weeks to disappear. I use Cera Ve moisturizer 2x a day and Eucerin Moisturizer
Norken
in
Kidney Transplant
3 years ago
Does anyone with a kidney transplant ride a motorcycle? If so do you wear anything special to protect your new kidney? How long did you wait
Riding motorcycle
Riding motorcycle
KWT65
in
Kidney Transplant
3 years ago
My brothers kidney transplant
Hello everyone, I’m Steve and new here, I joined this community because my brother has some serious health problems with his kidney and is in need of a transplant, I wish to interact with people who with similar conditions to better understand how to overcome this both medically and emotionally... thanks
Hello everyone, I’m Steve and new here, I joined this community because my brother has some serious health problems with his kidney and is in need of a transplant, I wish to interact with people who with similar conditions to better understand how to overcome this both medically and emotionally... thanks
Lordsteve
in
Lung Conditions Community Forum
3 years ago
Which vaccine have you received and how did that go??
Does your transplant center recommend a certain vaccine like Moderna, Pfizer or Johnson Johnson?? Which one would be the best for kidney transplant or all the same?
Does your transplant center recommend a certain vaccine like Moderna, Pfizer or Johnson Johnson?? Which one would be the best for kidney transplant or all the same?
Dna4christ
in
Kidney Transplant
3 years ago
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