Looking for info for my mum about what happens at the first appointment?

[Gutfeelings]

Hi everyone,

I'm new here and posting to try to help my mum who is going through a lot bless her. My mum is 82 and severely sight impaired she has a lot of health issues and suffers chronic pain so life has become increasingly difficult. In addition to this my health is not good at all I try to help her and look after her as much as possible but I am limited by my own conditions mainly Crohn's and complications from it alongside arthritis, anaemia requiring infusions in hospital and chronic fatigue.

Okay so that's a very long story just a bit shorter... I was hoping for any experiences of what generally happens during the first appointment? We had a letter recently after one of our gp's referred mum and the appointment is in a couple of weeks. Mum has had ckd for a while which has become stage 4 in recent months, not sure what her bloods are at the moment. The gp mentioned that sometimes Erythropoetin can be given and I wondered if so does it happen at the first appointment? Is it an infusion and how long does it take? Also I'm concerned about how she may feel afterwards? I know we are all different in how we react but just hoping it won't have any side effects.

Mum has been more tired recently but again as she has so many issues that can cause tiredness/fatigue it's hard to know the cause. Today we had a call to say she been booked for her eye clinic appointment, she has been waiting for this for quite a while and it's the only thing they can offer to try and reduce the vision loss anymore in one eye, the other is too badly affected and her sightloss causes her huge difficulties and sadness each day. These appointments are within days of each other so I'm hoping that if she does manage both that there won't be any side effects from any infusion that would stop her attending for the eye clinic two days later. I tried to ring yesterday to see if I could get any info about what is likely to happen but was unable to get to speak with anyone. I know mum is considering asking to change the appointment as her eye clinic has been delayed by several months and she has so little sight left that she wants to try this procedure to see if it will help.

Sorry for the long post, I'm quite worried about her as she has so many health issues and it's just the two of us. I just want her to feel a bit better and have some quality of life.

Thanks in advance for any thoughts or advice...

Kind regards

xx

[CatOnACloud]

Hi there! I too take care of my mother, 75, and she takes care of me, 51. Just the two of us here. It’s a real challenge when we’re both so impaired, though at the moment, mom’s got me beat.

I don’t know about the drug, or infusion. If she’s just now seeing a nephrologist, as you did say this was her first appt, I cannot imagine them giving her an infusion that day. I don’t know what her eGFR os, or the kind of chronic kidney disease she has, so that limits my response.

In regards to her eye appointment and procedure, she should definitely go for it. I would hope she can keep both appointments. Unless you pay cash, every medication or procedure has to be run through insurance first, so… I hope the procedure can help preserve some of her sight!

Keep reading here, these folks have provided many answers and given many links to help us. The National Kidney Foundation is a great resource as well. Best, Adrienne

[Twoka]

Hi

yes it can all be very overwhelming but hope your Mum gets sorted at both appointments.

Erythropoetin is usually given by injection, to help stimulate red blood cell production in those whose failing kidneys are no longer able to do so. It will depend on how anaemic she is, but it’s not painful and won’t affect her other activities.

My husband had twice weekly injections when on dialysis and then for a few weeks after his recent kidney transplant until his haemoglobin levels were normal again.

Good luck!

[Melirm]

hi, Erythropoetin Is a protein usually secreted by the kidneys and helps to stimulate red blood cell production. An artificial protein can be given called EPO for short to some patients, it is given by an injection not infusion usually and you can be taught to give it to your other ir sometimes you cN get it done in clinic or at the gp. How often it is needed can vary greatly from alternate days to every couple of weeks. Its unique to each patient.

It’s not something to be worried or concerned about in my experience, but speak to a consultant or kidney nurse if you have any concerns.

Good luck and best wishes.

[Gutfeelings]

Hi all

Just wanted to pop on and say a Big Thank you to you all for replying with your experiences and help. I am so grateful for your input. I will reply properly asap.. I'm just in the middle of another sleepless night so going to try again to get some much needed sleep.

Thank you again very much..

Take Care xx

[Angels54]

Hi , I feel it for you and your mum , having tests and trying new meds is not nice for any of us , however’ it’s what her body can cope with , I’m sure they will look a what she is coping with now and try and find the right meds for her , they might even give her steroids , remember most of the meds takes weeks to work , she can only try and see what works for her , good she had you , good luck 🤞

[Avenger]

Nothing hard for me. Get blood test before you go, call ahead to your Dr. They will let you know. I remember vital signs and talking, getting information.

[Gutfeelings]

Hi everyone,

I'm sorry for the delay in replying, I have a urinary tract infection and since I developed Crohn's I have become unable to tolerate oral antibiotics as they cause a flare. So I am trying to deal with it as best I can and hoping my body can fight it but feel quite worn out.

Anyway I wanted to thank you all for your kind words of advice and for sharing your experiences with mum and I.

Mum has a lot of arthritis pain plus fatigue from her various health issues so she asked me to postpone her appointment so that she can attend the eye clinic for her laser treatment. It was not an easy decision but as our dr had said we could wait we decided to ask if we could rebook the appointment.

The lady was very understanding when I explained mum's dilemma with needing treatment as a last resorted for her vision and she said they will book another appointment. I did ask if any treatment was likely to be given on the first visit, she said generally not but sometimes patients may go across to the dayunit if the doctor feels that an iron infusion would help. I also have iron infusions for my chronic anaemia so I have explained to mum what happens.

Thank you again for the details about having injections as we don't yet know what to expect and hopefully we can ask when we do get the appointment date through.

I hope you are all as well as possible and sending Many thanks from us both xx