Hi can anyone advise as my family are at the end of their tether. My niece Ashley is 32 and she is in Manchester Royal where she is receiving dialysis as she is in the final stages of kidney failure. Ashley has been in hospital since August 2020 and has since had her dialysis changed from PD to Hemo dialysis as she was getting too many infections. She is having seizures after dialysis, severe headaches, this leaves her in a state that she does not acknowledge anyone and the nurses are assuming she is refusing medication and food. She is now unable to open her eye (lost muscle function). Because she has a tracheostomy tube in, she cannot go on the renal ward so we were wondering if this is contributing to her not getting any better. Her mental health is suffering and today they were sending her home where the family were going to care for her. We are wondering if there is anyone who is or knows someone out there going through a similar thing?
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Heamodialysis
- Thread starter Kazash
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rebrascora
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- Type 1
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Hi
I am so sorry to hear about your cousin. What a heart breaking situation!
I have no knowledge of dialysis but if there is anyone here who does, it might be useful to have more information.
For instance....
I am assuming she is diabetic? And I would guess Type 1 but it would be helpful to know that for sure.
Is she on an insulin pump or Multiple daily injections and which insulin(s) does she use?
Do they test her Blood Glucose levels after dialysis? I am wondering if she is fitting due to low BG levels.
How are her BG levels checked? Does she have to finger prick to test or does she have a Freestyle Libre sensor. If not, then that might help to manage her BG levels better, if erratic BG levels are causing her problems, but I have no medical knowledge or real understanding of dialysis and just wanted to request more info so that people who may have experience can perhaps make constructive suggestions. Freestyle LIbre can be obtained on prescription in certain circumstances but it often takes time to get it authorized. It can also be purchased direct from Abbott laboratories. Not cheap but many of us self funded before we eventually got it on prescription because it is an amazing bit of kit for helping to manage your BG levels more effectively. The new one has alarms which alert you if your levels are dropping too low or going too high.
Anyway, that is the only constructive thing I can offer, but sending (((hugs))) and positive wishes your cousin's way.
I am so sorry to hear about your cousin. What a heart breaking situation!
I have no knowledge of dialysis but if there is anyone here who does, it might be useful to have more information.
For instance....
I am assuming she is diabetic? And I would guess Type 1 but it would be helpful to know that for sure.
Is she on an insulin pump or Multiple daily injections and which insulin(s) does she use?
Do they test her Blood Glucose levels after dialysis? I am wondering if she is fitting due to low BG levels.
How are her BG levels checked? Does she have to finger prick to test or does she have a Freestyle Libre sensor. If not, then that might help to manage her BG levels better, if erratic BG levels are causing her problems, but I have no medical knowledge or real understanding of dialysis and just wanted to request more info so that people who may have experience can perhaps make constructive suggestions. Freestyle LIbre can be obtained on prescription in certain circumstances but it often takes time to get it authorized. It can also be purchased direct from Abbott laboratories. Not cheap but many of us self funded before we eventually got it on prescription because it is an amazing bit of kit for helping to manage your BG levels more effectively. The new one has alarms which alert you if your levels are dropping too low or going too high.
Anyway, that is the only constructive thing I can offer, but sending (((hugs))) and positive wishes your cousin's way.
Hi thank for the messages. My niece is type 1 diabetic and has been diabetic since the age of 5 and she is now 33. Ashley receives daily injections. Not sure if BG is tested after haemodialysis but will check this out. Ashley has the freestyle libra but they are now testing her with finger prick and using a metre. I will find out what insulin she is currently on.
I think also having been in the hospital 10 months in the same room and having no visitors at the start of COVID, I think her mental health is suffering. The family visit daily. One doctor says she will be able to have a transplant but then another doctor says she won't be able to. Her brother and sister are a match for her kidney but at this point we just don't know. Ashley whilst in hospital has lost so much weight. I would like to thank you for replying it really means a lot. Xx
I think also having been in the hospital 10 months in the same room and having no visitors at the start of COVID, I think her mental health is suffering. The family visit daily. One doctor says she will be able to have a transplant but then another doctor says she won't be able to. Her brother and sister are a match for her kidney but at this point we just don't know. Ashley whilst in hospital has lost so much weight. I would like to thank you for replying it really means a lot. Xx
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
So sorry to hear about your niece @Kazash 
What a difficult situation, made all the harder by Covid!
We have had a few members on dialysis over the years, but I can’t think of a current regular poster who is receiving that treatment.
We do have some who are living with long-term kidney disease though, including @Ljc I think?
What a difficult situation, made all the harder by Covid!
We have had a few members on dialysis over the years, but I can’t think of a current regular poster who is receiving that treatment.
We do have some who are living with long-term kidney disease though, including @Ljc I think?
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