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Islet cell transplant
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Update and meeting the team.
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
I’ve had lost of tests done over the past few months. I met up the the transplant team. I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time
wendycu
in
MPN Voice
2 years ago
Letters of Hope: docuseries on trials and triumphs of transplantation
Hi everyone, I wanted to bring awareness to a wonderful docuseries featuring Valen Keefer, who is thriving after receiving a kidney transplant as a teenager and years later a liver transplant. Maybe someone has already posted but totally worth seeing again. Very inspirational and relatable. I’ve
Hi everyone, I wanted to bring awareness to a wonderful docuseries featuring Valen Keefer, who is thriving after receiving a kidney transplant as a teenager and years later a liver transplant. Maybe someone has already posted but totally worth seeing again. Very inspirational and relatable. I’ve
Kidney2014
in
Kidney Transplant
2 years ago
Post Transplant Issues
I had a kidney transplant on 2/11/21 and at the same time I was diagnosed with Parkinsons. Is there anyone out there who is on both anti-rejection drugs and carbidopa/levodopa. I have been struggling to feel better for 17+ months. I get so agitated and my quality of life just isn’t there.
I had a kidney transplant on 2/11/21 and at the same time I was diagnosed with Parkinsons. Is there anyone out there who is on both anti-rejection drugs and carbidopa/levodopa. I have been struggling to feel better for 17+ months. I get so agitated and my quality of life just isn’t there.
Mesabi
in
Kidney Transplant
2 years ago
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Rapamycin
I have friends using low doses of this drug and I have an appointment with a doctor that prescribes it. When I asked my Hematologist at Mayo about it they said this drug may be get approved sooner than later for MPN’s. Has anyone researched this or used it. It is a drug used for organ transplants but
I have friends using low doses of this drug and I have an appointment with a doctor that prescribes it. When I asked my Hematologist at Mayo about it they said this drug may be get approved sooner than later for MPN’s. Has anyone researched this or used it. It is a drug used for organ transplants but
MDI55
in
MPN Voice
2 years ago
pregnancy post transplant
I am currently taking tacrolimus and mycophenolate, are these drugs healthy for a baby? What have other experienced with pregnancy after a kidney transplant?
I am currently taking tacrolimus and mycophenolate, are these drugs healthy for a baby? What have other experienced with pregnancy after a kidney transplant?
Yolie_85
in
Kidney Transplant
2 years ago
Stem Cell Transplant-update
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
ConniesDad
in
MPN Voice
2 years ago
Read this before you get your spleen removed
https://www.pdsa.org/products-a-publications/e-news/2018-enews/item/1613-pdsa-enews-032818.html Rapamycin is being tested as a longevity drug.. It is not "approved" as an IPT drug, but it is available by prescription. I have heard of people ordering it from off shore sources. It is a generic drug
https://www.pdsa.org/products-a-publications/e-news/2018-enews/item/1613-pdsa-enews-032818.html Rapamycin is being tested as a longevity drug.. It is not "approved" as an IPT drug, but it is available by prescription. I have heard of people ordering it from off shore sources. It is a generic drug
SurferDude
in
ITP Support Association
2 years ago
Kidney Transplant
😊On Friday, I received a call call from my transplant nurse that I was identified for a kidney coming available the next morning. I accepted and my husband drove me to the hospital 2 hours away. Next day I had the 4 - 6 hour surgery and the new kidney began to work right away. I am less than 48
😊On Friday, I received a call call from my transplant nurse that I was identified for a kidney coming available the next morning. I accepted and my husband drove me to the hospital 2 hours away. Next day I had the 4 - 6 hour surgery and the new kidney began to work right away. I am less than 48
Hidden
in
Kidney Dialysis
2 years ago
Kidney Transplant
Has anyone else here had more than one transplant?
Has anyone else here had more than one transplant?
Leekee
in
Kidney Transplant
2 years ago
People of HealthUnlocked - COPD: Preparing for a Double Lung Transplant
COVID-19 disproportionately impacted some more than others. Although we were all thrust into uncertainty when the pandemic hit, arguably, those with lung conditions were at the forefront of concern. Today, Bernadette tells us about her story of living with chronic obstructive pulmonary disease (COPD)
COVID-19 disproportionately impacted some more than others. Although we were all thrust into uncertainty when the pandemic hit, arguably, those with lung conditions were at the forefront of concern. Today, Bernadette tells us about her story of living with chronic obstructive pulmonary disease (COPD)
SaskiaHU
HealthUnlocked
in
HealthUnlocked Blog
2 years ago
MF high risk Mutations
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
EPguy
in
MPN Voice
2 years ago
Off Tocilizumab after six months
I don't know where to start. My history will show I have GCA and PMR all diagnosed in 2019 after several misdiagnoses, and started treatment with Pred 15mg and then up to 25mg which helped the PMR and the GCA somewhat. I was then put on 20mg of Mexthetrate which did not agree with me. I change my
I don't know where to start. My history will show I have GCA and PMR all diagnosed in 2019 after several misdiagnoses, and started treatment with Pred 15mg and then up to 25mg which helped the PMR and the GCA somewhat. I was then put on 20mg of Mexthetrate which did not agree with me. I change my
redhouts
in
PMRGCAuk
2 years ago
How to become an advocate for kidney health
NKF advocates have won a number of policy campaigns both in Congress and state capitals across the country - but we're not done yet. We discussed some recent wins and upcoming challenges for the kidney advocate community with Jeff Currey, a Connecticut State Representative and kidney transplant recipient
NKF advocates have won a number of policy campaigns both in Congress and state capitals across the country - but we're not done yet. We discussed some recent wins and upcoming challenges for the kidney advocate community with Jeff Currey, a Connecticut State Representative and kidney transplant recipient
JackieJ_NKF
Partner
in
Kidney Donation
2 years ago
Possible brain lymphoma
Hi, my husband is waiting for a biopsy to check a lesion in his brain. His neurosurgeon told us it seems like lymphoma from MRI scan image, which is common among people on immunosuppressant after organ transplant. I have been feeling completely broken since he had emergency MRI two weeks ago. Our
Hi, my husband is waiting for a biopsy to check a lesion in his brain. His neurosurgeon told us it seems like lymphoma from MRI scan image, which is common among people on immunosuppressant after organ transplant. I have been feeling completely broken since he had emergency MRI two weeks ago. Our
Springbunny
in
British Liver Trust
2 years ago
double lungs transplant
I was diagnosed with pulmonary sarcoidosis in 2020. My condition has worsened over the years to were I now have to been on oxygen all the time m ..I've recently been put on the list for a double lungs transplant after undergoing different test at Birmingham queens hospital .. After reading there
I was diagnosed with pulmonary sarcoidosis in 2020. My condition has worsened over the years to were I now have to been on oxygen all the time m ..I've recently been put on the list for a double lungs transplant after undergoing different test at Birmingham queens hospital .. After reading there
Purpal
in
Lung Conditions Community Forum
2 years ago
My wife has a Bilirubin of 43 which has increased from 16 in February.
My wife is suffering from none alcoholic cirrhosis (PSC). Her consultant is carrying out all the right procedures to determine the level of scaring/damage to her liver (Blood tests, CT scan, MRI etc.,). These tests are carried out 6 monthly, and my wife, who is 75, has been advised that she would
My wife is suffering from none alcoholic cirrhosis (PSC). Her consultant is carrying out all the right procedures to determine the level of scaring/damage to her liver (Blood tests, CT scan, MRI etc.,). These tests are carried out 6 monthly, and my wife, who is 75, has been advised that she would
Ron111
in
British Liver Trust
2 years ago
after kidney transplants
I am 8 months post on 8/14 it has been almost too easy and I am so thankful but my numbers have always been low for a living donor. My doctors tell me everybody is different and no to get caught up in my numbers. I feel great so I suppose if my team is not concerned I should not be either. They have
I am 8 months post on 8/14 it has been almost too easy and I am so thankful but my numbers have always been low for a living donor. My doctors tell me everybody is different and no to get caught up in my numbers. I feel great so I suppose if my team is not concerned I should not be either. They have
Porter20
in
Kidney Transplant
2 years ago
Brain tumor from liver?
My husband had very strange sensation about 2 months ago. He describes it “electric ants marching from his temple to the end of the arms” and felt nauseous. If I think back, it might have been seizures.It went away after 2 weeks, then he started suffering from daily headache. He always had migraine with
My husband had very strange sensation about 2 months ago. He describes it “electric ants marching from his temple to the end of the arms” and felt nauseous. If I think back, it might have been seizures.It went away after 2 weeks, then he started suffering from daily headache. He always had migraine with
Springbunny
in
British Liver Trust
2 years ago
waiting for diagnosis, so scared…
My husband had very strange sensation about 2 months ago. He describes it “electric ants marching from his temple to the end of the arms” and felt nauseous. If I think back, it might have been seizures.It went away after 2 weeks, then he started suffering from daily headache. He always had migraine with
My husband had very strange sensation about 2 months ago. He describes it “electric ants marching from his temple to the end of the arms” and felt nauseous. If I think back, it might have been seizures.It went away after 2 weeks, then he started suffering from daily headache. He always had migraine with
Springbunny
in
The Brain Tumour Charity
2 years ago
we are waiting for diagnosis. And I am so scared…
My husband had very strange sensation about 2 months ago. He describes it “electric ants marching from his temple to the end of the arms” and felt nauseous. If I think back, it might have been seizures. It went away after 2 weeks, then he started suffering from daily headache. He always had migraine
My husband had very strange sensation about 2 months ago. He describes it “electric ants marching from his temple to the end of the arms” and felt nauseous. If I think back, it might have been seizures. It went away after 2 weeks, then he started suffering from daily headache. He always had migraine
Springbunny
in
Meningioma Support
2 years ago
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