[ree2112Participant]

I’ve had a new consultant, which I can say I’m more than happy with this lady as my old one was like a chocolate teapot…
Anyway after an impromptu phone call, my new consultant wanted a catch up after her holiday, I had a bit of a moan about my last telephone appointment with my CNS, (I was told to wear Tena Lady Pads as I can be a little incontinent), she, my consultant, asked me about my results from my kidney scan to which I told her I’ve never had a scan. I keep getting told to drink more to flush my kidneys etc but never been tested! Is this normal or just me?
Anyway, the next day after the call, I got a call from the Medical Physics Department at hospital with an appointment. Quick or what? That’s never happened before!
I don’t really know what to expect as my appointment is tomorrow (20.9.22). Has anyone else been referred to this department?
I’m a little worried as my spine is completely inoperable and now kidneys. To top it off, my SCT has been postponed 3 times, I’ve got yet another disappointment, sorry appointment on Thursday about that and the proteins are rising in my blood now. Great!!
I’m curious about my appointment in the morning but has anyone else been through it?
TIA

Marie

[tony642Moderator]

Hi Ree2112,

My diagnosis was a bit different from your experience as I collapsed and ended up in A&E. Have you had a biopsy to determine if you have Myeloma? Are you on dialysis due to the kidney failure (do you know what your actual GFR is?). I have had Myeloma for nearly 4 years and suffered from complete kidney failure, but I have never had a scan on them yet!

We are here to try to help you through it, please let us know what happens and how we might be able to help.

Sincere regards, tony

[mulberryParticipant]

Ree2112 I’m glad to hear that you’re having your kidneys tested, even though I don’t know what that test will entail! Your new doctor sounds through and it can only help to have a complete review of all aspects of your myeloma now. Although I’m very happy with my consultant, I had a new, young doctor for a few months and he organised a scan and a few tests as he noticed I’d not had them for a time, I guess he’d had more time to read through my notes.
Good luck for tomorrow.

[ree2112Participant]

Morning Tony & Mulberry

Tony… Yes I have had a biopsy and I have been formally diagnosed with Myeloma. That was back on 22 June 2020. I’ve had 4 cycles of VTD and have been harvested ready for my SCT. All through my treatment my kidney function has been a bit rubbish. I’ve never been given any GFR rates from my medical team other than the other month when I did all the other times I was told “could be better” although my creative has been as high as 144. The Myeloma has taken my spine but my new consultant has noted I’ve never had them scanned. So maybe it could be the multiple not the singular.

Mulberry… I am so pleased that my new consultant has taken over my care. She seems totally on my side. I’ve finally got someone in my corner. She’s chasing my SCT team (I even get phone calls, well I’ve had a call from my SCT CNS which is rare) and I think she’s checking all bases for me.

Both… Today will be another experience in my Myeloma journey and thank you for being with me.

Marie

[ree2112Participant]

Today was BORING
I was at the hospital for 08:40 and left 7 hours later.
I was injected with some radioactive stuff and bloods taken at 4 hours and 6 hours intervals. It went straight to the centrifuge.
My consultant will have the results tomorrow sometime.
I’m very tired tonight all that sitting around doing nothing…
Bonus though I bumped into my sister and brother in law.
I hate the unknown but isn’t this myeloma just that? The unknown

[kh0305Moderator]

Hi Marie,
that does sound like a VERY long and boring day! How are the results looking?
xx

[ree2112Participant]

Hey kh0305
Not heard anything from my consultant about yesterday but they do say no news is good news don’t they.
I think my consultant is trying to do her best for me as the other one didn’t. She is thorough.
It was boring thank goodness I’ve taken up cross stitch again!!!
Thanks xx

[tony642Moderator]

Hi there,

Your medical team should be able to give you yuor GFR to say how your kidneys are doing if you ask them to. Be aware that sometimes they give you an estimated GFR, and sometimes it is an actual figure, it depends which formula they use to calculate it.

There are websites available on the internet where you can calculate your own GFR. All you need is your creatnine reading from your last blood test, plus other stuff like height, weight, sex, etc. I have compared their figures to those I have received from my consultant and found them to be quite accurate.

My kidneys were so bad I had to have dialysis as they had completely failed, but I know that at my hospital, they don`t look at putting someone on dialysis until the GFR is below about 9 or 10%, but this is variable between patients.

I know you think you are on a journey into the unknown, but a lot is known about Myeloma, and also the treatments for it. There are some very good treatments available and some excellent results have been seen from them. Keep your chin up, and don`t forget that we are here to be there for you.

Stay srong.

Regards, Tony

[ree2112Participant]

Morning Tony
I’m travelling to a different hospital at the moment about my SCT but that’s another story!!!
I do ask for my levels when I go for my zometa and get told they’re ok. When I speak to my CNS I ask her and get told my creatinine levels are high and then get told to drink more.
Since I got admitted with severe back pain to diagnosis until now my consultant has been a bit rubbish. But now my new consultant is not leaving any stone unturned.
I am in no doubt my kidneys are fine but the purpose of my original post was wondering if anyone else had been to the Medical Physics department and what they do…. But I’ve been now !!!
Thanks

[mulberryParticipant]

Hi Marie
When you mentioned what went on in the medical physics department kidney tests, I realised that I had had them. So many tests, they become a bit of a blur.
Hope the results are ok.
Some patients have managed to get precise test results out of their teams by asking them to fill in the Myeloma UK patient diary, or by having copies of the updates sent to the GP.
Jane

[ree2112Participant]

Oh Jane
It’s appointment after appointment isn’t it sometimes?
Last week I had Medical Physics on Tuesday then 24 hour urine collection and Thursday my SCT consultants appointment. It does all blur into 1 at times.
I haven’t heard anything from my consultant about my test so I’m taking that as a positive.
Thanks for taking the time to read, reply and care.
Marie xx

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