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Never give up !!!
My name is Vicki, I am a waiting for my second kidney transplant. Both of my kidneys failed when I was 32 years, my children were 1 @ 2 years. I was on hemodialysis in center for 2 years and then got a lifesaving transplant. My life was wonderful, I had 27 years and then in 2020 my son passed and I was
My name is Vicki, I am a waiting for my second kidney transplant. Both of my kidneys failed when I was 32 years, my children were 1 @ 2 years. I was on hemodialysis in center for 2 years and then got a lifesaving transplant. My life was wonderful, I had 27 years and then in 2020 my son passed and I was
bubbaboo2
in
Dialysis Support
5 months ago
Ruxalinitib for MF2
I would love to hear anyone’s experience with Rux. How soon did you notice a difference? Which were the most obvious side effects? How low did they allow platelets to go and other bloods, before dose adjustments or transfusions? Any replies much appreciated!
I would love to hear anyone’s experience with Rux. How soon did you notice a difference? Which were the most obvious side effects? How low did they allow platelets to go and other bloods, before dose adjustments or transfusions? Any replies much appreciated!
artydutch
in
MPN Voice
5 months ago
Better Understanding
I knew and expressed here that I was fearful of crashing this winter as I have since 1995 to varying degrees. I had set a marker of April 01 as a measure. I was successful although I will wait until April 01 to see it in my rear view mirror, and have a celebration although I am already celebrating. Some
I knew and expressed here that I was fearful of crashing this winter as I have since 1995 to varying degrees. I had set a marker of April 01 as a measure. I was successful although I will wait until April 01 to see it in my rear view mirror, and have a celebration although I am already celebrating. Some
WIZARD6787
in
Pernicious Anaemia Society
5 months ago
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Open letter
Hi all: I want to thank all who have posted regarding their experience with MPNs in this forum. I'm very grateful for the information and insight regarding ET, PV, and MF. All of you have educated and helped me a great deal. I write this while experiencing a great deal of stress and sadness; due to
Hi all: I want to thank all who have posted regarding their experience with MPNs in this forum. I'm very grateful for the information and insight regarding ET, PV, and MF. All of you have educated and helped me a great deal. I write this while experiencing a great deal of stress and sadness; due to
Kiruna
in
MPN Voice
5 months ago
Over reactive 1st Obin Treatment.
I’ve had ct scans EKG’s, echos,
transfusion
, antibiotics. 100’s of
blood
test and cultures. All negative. Now on prednisone, massive rash. Infectious disease doctors, my oncologist, dermatologist all involved. They are now thinking it’s a"delayed reaction" to the obin which a small 1% risk get.
I’ve had ct scans EKG’s, echos,
transfusion
, antibiotics. 100’s of
blood
test and cultures. All negative. Now on prednisone, massive rash. Infectious disease doctors, my oncologist, dermatologist all involved. They are now thinking it’s a"delayed reaction" to the obin which a small 1% risk get.
DAmen
in
CLL Support
25 days ago
Itching in Myelofibrosis
I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep. I am on 10mg of Cetirizine Hydrochloride daily and though
I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep. I am on 10mg of Cetirizine Hydrochloride daily and though
Bullace
in
MPN Voice
5 months ago
My take on the Nhs
OK I was 2 hours waiting in A&E when I had unusual chest pains but once I was seen I was admitted to hospital for nearly two months . This is back in October 2019 .I can only say the care I was given was outstanding. It turns out as well as needing a triple bypass I had anaemia quite badly which I
OK I was 2 hours waiting in A&E when I had unusual chest pains but once I was seen I was admitted to hospital for nearly two months . This is back in October 2019 .I can only say the care I was given was outstanding. It turns out as well as needing a triple bypass I had anaemia quite badly which I
Pollypuss
in
British Heart Foundation
6 months ago
Advice on egg freezing and hysterectomy for severely heavy bleeding
Hi everyone, I'm doing a little bit of research so I can take a huge stack of notes to my next gynaecology appointment, and wondered if anyone was able to share their experiences. I'm looking at potentially freezing some of my eggs, as I have endometriomas. I'm still undecided as to whether I want children
Hi everyone, I'm doing a little bit of research so I can take a huge stack of notes to my next gynaecology appointment, and wondered if anyone was able to share their experiences. I'm looking at potentially freezing some of my eggs, as I have endometriomas. I'm still undecided as to whether I want children
GrouchoSparx
in
Endometriosis UK
6 months ago
Break from chemo
I had my pre chemo oncologist appointment today. He wants me to take a break from chemo to give my body a a chance to recover and go back to see him in 6 weeks. I’ve had 3 rounds of chemo gem/carbo but missed 2 of gem on its own. Scan showed some reduction and stable disease. But I’ve been admitted to
I had my pre chemo oncologist appointment today. He wants me to take a break from chemo to give my body a a chance to recover and go back to see him in 6 weeks. I’ve had 3 rounds of chemo gem/carbo but missed 2 of gem on its own. Scan showed some reduction and stable disease. But I’ve been admitted to
Purplerose12
in
My Ovacome
6 months ago
Switched from hydroxy to anagrelide advice.
Hello to all of you. I m 73 Yr. old woman with myelofibrosis. After a tough year with hospital admissions due to gallstones & sepsis ( recurrent,) & 5stone weight loss, l ve been taken off hydroxy due to anaemia, & needing too many blood transfusions. Have been put on Anagrelide & 1 epotein injection
Hello to all of you. I m 73 Yr. old woman with myelofibrosis. After a tough year with hospital admissions due to gallstones & sepsis ( recurrent,) & 5stone weight loss, l ve been taken off hydroxy due to anaemia, & needing too many blood transfusions. Have been put on Anagrelide & 1 epotein injection
Didgeridoo2
in
MPN Voice
6 months ago
restless legs
My GP diagnosed me with severe rls in 2010. I started with .25mg pramipexole (Sifrol) now taking .75mg and olmesartan/amlodipine for high blood pressure. I have had rls before this but only occasionally. He has now suggested an iron tablet Maltofer which I am starting today. I have a history of
My GP diagnosed me with severe rls in 2010. I started with .25mg pramipexole (Sifrol) now taking .75mg and olmesartan/amlodipine for high blood pressure. I have had rls before this but only occasionally. He has now suggested an iron tablet Maltofer which I am starting today. I have a history of
Miss_E
in
Restless Legs Syndrome
6 months ago
Varices
It was horrendous and needed a
blood
transfusion
. This year the varices have been banded again and I'm not sure if I should fly or avoid it??
It was horrendous and needed a
blood
transfusion
. This year the varices have been banded again and I'm not sure if I should fly or avoid it??
Treble2023
in
British Liver Trust
1 year ago
At my wits end 😢
I am honestly in floods of tears writing this as I can't believe the way I have been treated. I have been bleeding now every day for the last few years. I have been put into chemical menopause several times which hasn't worked, I have had to fight, beg and plead for someone to help me. I have very
I am honestly in floods of tears writing this as I can't believe the way I have been treated. I have been bleeding now every day for the last few years. I have been put into chemical menopause several times which hasn't worked, I have had to fight, beg and plead for someone to help me. I have very
Bleedinglove
in
Endometriosis UK
7 months ago
Pain everywhere.
They didn't know if they "knicked " me or what but I lost 8 pints of
blood
very quickly. They barely got me
transfusion
in time. I chalked it up to doctors mistake as did my other doctors. A little over a year later I was coloring with my granddaughter and I suddenly felt odd.
They didn't know if they "knicked " me or what but I lost 8 pints of
blood
very quickly. They barely got me
transfusion
in time. I chalked it up to doctors mistake as did my other doctors. A little over a year later I was coloring with my granddaughter and I suddenly felt odd.
CountryGirl9636
in
Partners for Behcet's
8 months ago
An Eventful January
I like to keep the NHS busy. My January itinerary as its stands, although more can be added yet. Week 1 - Respiratory Chest Consultant, following a CT Scan on 29/12 I had an appt with the Consultant a few days later. As I expected the scan showed that I had a Pleural Effusion/Pneumonia (fluid) in both
I like to keep the NHS busy. My January itinerary as its stands, although more can be added yet. Week 1 - Respiratory Chest Consultant, following a CT Scan on 29/12 I had an appt with the Consultant a few days later. As I expected the scan showed that I had a Pleural Effusion/Pneumonia (fluid) in both
Hidden
in
British Heart Foundation
7 months ago
Venetoclax
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
JoeMcDote
in
CLL Support
7 months ago
Ongoing anemia
Why wait for four months to give her red
blood
cells when she last had RBC
transfusion
4 months ago it brought her Hgb up to 115, then three months ago had iron infusion. Which didn't really increase her Hgb.
Why wait for four months to give her red
blood
cells when she last had RBC
transfusion
4 months ago it brought her Hgb up to 115, then three months ago had iron infusion. Which didn't really increase her Hgb.
jointpain
in
MPN Voice
10 months ago
Vitamin A
Hello everyone,This is such a bizarre question - I went to see a liver consultant back in October of last year and I got a call from the Liver registrar saying everything was okay but my inr was on the low wide so ive had 2 transfusions of vitamin K so that helped with that but she said my vitamin A
Hello everyone,This is such a bizarre question - I went to see a liver consultant back in October of last year and I got a call from the Liver registrar saying everything was okay but my inr was on the low wide so ive had 2 transfusions of vitamin K so that helped with that but she said my vitamin A
DaniellaJayMay
in
British Liver Trust
8 months ago
low hemoglobin and platelets
My husband in on Carbo and cabazitaxel and it is causing his hemoglobin and platelets to drop. He is now having to have blood transfusions every other day. Has anyone else had this issue and if so did your blood counts finally stabilize?
My husband in on Carbo and cabazitaxel and it is causing his hemoglobin and platelets to drop. He is now having to have blood transfusions every other day. Has anyone else had this issue and if so did your blood counts finally stabilize?
Peloton
in
Advanced Prostate Cancer
8 months ago
Consultant recommendations in the Essex, London, South East area
I also had a
blood
transfusion
after my second child and it caused me to have anti-c blood. I wonder if this could be a cause of the situation? I live in Epping, Essex and so any recommendations of a specialist in London, Essex or nearby would be very much appreciated.
I also had a
blood
transfusion
after my second child and it caused me to have anti-c blood. I wonder if this could be a cause of the situation? I live in Epping, Essex and so any recommendations of a specialist in London, Essex or nearby would be very much appreciated.
Cybob
in
Thyroid UK
9 months ago
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