[shropshiremumParticipant]

Looks like more spam…☹️

[shropshiremumParticipant]

Hello.

Sorry for the delay in replying. Aside from the general fatigue, which is also associated with the myeloma, symptoms related to my kidney disease aren’t too bad. I do have to get up in the night more frequently (for a wee!), and I occasionally wake up with a headache.

Both of these were symptoms I had before my diagnosis, so it was a lightbulb moment when I first spoke to a kidney CNS and she listed the possible symptoms of kidney disease.

As an aside, at a dental check up a couple of years ago, my dentist asked me if I ground my teeth, as doing so at night can cause headaches in the morning, apparently (I’d had some experience of waking up with a headache). Unfortunately, I’ll never know if my kidneys were already deteriorating at that point.

I have to do weekly Eprex injections and am on iron tablets. At diagnosis, I was put on amlodipine to keep my blood pressure down to protect my kidneys, but since my SCT it’s been fine so I’m not on them at the moment.

How about you?

[shropshiremumParticipant]

Hi there.

Just thought I’d check in to see how you’re doing. Did you manage to speak to your team about getting a renal consultant on board?

Susan

[shropshiremumParticipant]

Admin, someone seems to be advertising/spamming on here…

[shropshiremumParticipant]

Hi there.

I’m a bit late to this thread, but as a teacher with myeloma it’s of great interest to me.

I’m almost twelve weeks post-stem cell transplant and am about to start a maintenance treatment. I’ve had almost twelve months off sick, and am trying to plan what to do when my half pay ends. I’m not thrilled about giving up work, but I don’t feel it’s safe to return whilst covid infections are increasing, especially in schools. I’m also still suffering from fatigue.

I’m going to ask if I can work from home, but obviously, that’s difficult in my profession. Plan B is to request early retirement on medical grounds.

Mothas, did you apply and were you successful? If so, did you get your pension enhanced? I’ve only been teaching for 16 years, so at the moment, my pension fund isn’t huge, although I don’t have a mortgage to worry about, just normal household bills, etc…

Thanks

Susan

[shropshiremumParticipant]

Hi there.

I was diagnosed in November of last year, following a routine blood test that revealed I had just 12% kidney function. It came completely out of the blue, although I’d been feeling a bit ropey for a couple of months and had been suffering from achy legs. I was 47 at the time and was still breastfeeding my 2½ year old, plus I’d had a couple of tick bites in the summer, so menopause, late motherhood and Lyme disease were all on my radar! Cancer was not something I’d considered…

Anyway, my kidney function dropped as low as 10% during treatment (VTD), and dialysis was something I was really worried about.

I had my stc in July, and was petrified that my kidneys would deteriorate, but fortunately they held out. Since then they’ve slowly improved and at my last blood test two weeks ago, they were at 19%. That’s still very low, but any movement upwards is good.

I don’t really have any advice for you, but just wanted you to know you’re not alone. I still feel that I’m on very shaky ground. Dialysis would have such a huge impact on my life (in addition to the myeloma), that it’s always going to be there at the back of my mind. I have a small child and a partner who’s in the Navy, so there are logistical issues to figure out, should I ever need it.

All I can say is hang on in there, speak to your medical team, and do you have a renal consultant on board? My renal CNSs are lovely and very supportive.

Susan

[shropshiremumParticipant]

Hi all.

I discovered this thread last night and found it very interesting reading! I am around three months post transplant and a few weeks ago my CNS gave me a letter to take to my GP, in order to organise my covid re-vaccination. I called ahead to check I’d be able to get it done, but the answer was “no”. I’d have to book online, or call 119. Tried booking online, but the system has me as vaccinated already. Called 119, and gave up after being on hold forever and a day!

Five days later, I got a text from my GP surgery, asking me to call them! I rang, and it was basically to give me some info on getting re-vaccinated!! Long story short, the receptionist forwarded me an email with a link to the Telford and Wrekin/Shropshire walk-in clinics! My sister had sent me the same information five days earlier…

Needless to say, I went to a Saturday clinic in Donnington. The medical staff were helpful, as I didn’t want to wait in the queue inside. I got jabbed on a chair outside! There was some issue regarding how the jab could be recorded. I think it was logged as a booster. A member of the medical team said he would give me an email address to pass on to my GP to organise the second jab at a hospital, but then he walked off without giving me the details!

So, I will go back in 8 weeks to get the second jab, all being well, but goodness knows how they’ll log that one!

I’m interested to find out if anyone has had both jabs again after their SCT, and if they had any issues with the second one…

[Author]

Posts