Always run down with MGUS

Bistrot Patty's Paresseux is open and you are all welcome!
(No I barely speak English as my first language. I used a translator. 😂)

I think my fatigue is medication and age, even though I apparently have been diagnosed as having MGUS. I am due for lab work Friday and office visit the following Week. So far, nothing terribly dyramatic, but at 92 I don't think anyone is going to get anxious or super fast reacting.
New Medication for Trigeminal Neuralgia, only one a day, but with the high blood pressure meds, and diuretics, I am ready for a nap by 3, and another one around 8 at night and then sleep 7 hours at night. I mansge to stay awake for meals, and a couple of hours on the computer.
LIFE IS TOUGH. HA! HA!
Gina5009

Gina at 92 you have already demonstrated your amazing stamina. Just enjoy life. You’ve earned it.
Have a good weekend!
Patty

Thank you . I’m not too sure on the associated cause of kidney failure (if it’s paraproteins or some other reason for kidney failure - I have a K/L ratio outside of normal, but lambda isn’t over 100 just yet). The MGUS has progressed to MGRS already, and BMB looks like it’ll be October or November to see if it’s SMM with renal significance. In 2021 it was 8%, and considering things have symptomatically and objectively progressed (jump in paraproteins as well as CKD) I’m thinking it won’t be 8% anymore. I’m 50, so I think I’ve had MGUS for some years before the first BMB in august 2021 for it to be progressing like it is.
This is a little info on SMM w/ renal significance https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287868/

It’s so frustrating that it takes so long to get a BMB scheduled. I know that watching and waiting should be routine by now but I always want to know what I am dealing with.
Maybe they could work you in sooner.

Yes; it’s not something that would happen with a different type of cancer..I don’t mean to intentionally be contentious but I sometimes imagine if it was suspected breast cancer, I doubt it would be left for months before scheduling a mammogram..there’s just a different approach to people with MGUS/MGRS/SMM where in my own case I definitely feel like my current haematologist looks at me with only partly hidden festering distain for the inconvenience I am to his otherwise undisrupted day, because in his eyes I’m making a big deal out of nothing - when in reality, the long list of complications and ancillary health problems that stem from a monoclonal gammopathy is so much greater than many other conditions (without advancing to overt cancer) in some instances.
From what I’ve experienced, it seems to be less important because it is seen to be an ‘older persons disease’, somehow rendering it - along with older people - as of less importance (something I find personally offensive, because everyone is valuable no matter their age or anything else about them).
I am happy to be seen by a different haematologist in October - the appointment was confirmed today - and so hopefully she will want to do something like kidney or BM biopsies soon afterwards. Hopefully…🙂

Sadly, I think you are spot on. Finding the right provider is so important. We need a competent physician but also an advocate who will fight for us.
The medical social worker attached to your treatment facility may be able to help move things along. Doctors tend to go with the flow.
Good luck!

Thanks pmm, I really appreciate your kindness 🙂
Here in Au, I’ve been asking for a social worker to help for the last 6 years - haven’t seen one just yet; I think it takes a wait of around 10 years? If longer? Some people I’ve met in hospital haven’t seen one in over 15 years. We all joke that the system doesn’t actually have any, and they’re just billing for them to line the department pockets using patients as numbers because they don’t actually have to cut us up to show they’ve seen us (unlike a doc or nurse, who are taking samples or performing surgeries as evidence they exist albeit with long waiting periods) 😉
Hopefully this different haematologist will actually help me not continue to progress in CKD and place me on the trial register for interventions for MGRS/SMM 🙂
In terms of it being a big hospital that is also a teaching facility, I’ve experienced some life threatening events due to critical mistakes, which have been laughed off (in my face) as jokes or ‘mishaps’, including inadvertently suffocating me when the anaesthetic team forgot to switch on the ventilator when I was in surgery almost ending my life, dropping me on the floor causing injury, and extubating me too soon causing more significant lack of oxygen and resultant waking up with patches of very red irritated skin on my chest with significant abrasions in my airway (not the worst that’s happened, and when this happened I was late 30’s, so fragility of health was not a factor). So I think the lack of social worker support delivered isn’t a high priority in these hospitals. I think they have spent all their budget on their legal department instead 😉

Yikes! I hate to hear that. That is what I did for the last 15 years of my work life. I loved it so much, I worked until I was 70. Social work in a pediatric hospital was busy. There were 50 of us in a 300 bed facility and we worked with the families to help them negotiate the medical system. It’s quite daunting everywhere, it seems.
I learned to be the squeaky wheel while also being kind to the medical staff who are busy, stressed and frequently heartbroken about patients. There will always be heartbreak but thankfully more frequently patients get better.
I avoided those pesky hospital lawyers like Poison Ivy. 😂
So squeak a bit (with a smile if you can muster one) but don’t let them forget that you are there. We need your well-spoken humor to brighten our days!
Patty

That’s really lovely of you Patty ❤️🙂
Here, the staff - especially in emergency departments - have very little sense of urgency or patients as the priority, they spend much time socialising, on their phones, snacking on sandwiches and food that is supposed to be for patients who haven’t eaten for hours (sometimes you lay there for a whole day with no actual investigation..they’re wearing you down till you leave and go to another facility) and spend a lot of time telling you your delusional and symptoms you’re reporting aren’t there - being a squeaky wheel (especially in ER) has had me talking down the security staff and big male nurses wielding needles filled with sedatives who are threatening to put me in an involuntary psych hold for continuing to insist I have something wrong when I don’t (even though they never investigated symptoms). That was when I had a bad fall and damaged my knee replacement - I’m still awaiting surgery (I fell in January) for the repair - can’t weight bear on my leg for all these months (and it’s hurting). I escaped that hospital when I told them I needed a wheelchair to go toilet - I rolled outside with the sheet wrapped around my head and shoulders like a scarf, down the street, got a cab home, and after a couple of weeks I managed to get to a private surgeon who said it should’ve been operated on immediately. So, asking for a social worker in that instance was laughed at, because once they have it in for you, they do what they can to harm you. It’s very dangerous taking chances in some public hospitals here. Other times I’ve been withheld pain meds after orthopaedic surgery by nurses in the middle of the night, until I’m screaming in pain, then held down and strapped to the bed because the same nurse said I refused to take medication which resulted in a psychotic break (totally untrue). Again, in the public system. That same nurse refused to help me with a kinked catheter and I ended up laying in a puddle around my stitches for god only knows how many hours during the night. This was all at a major teaching hospital. There are major power imbalances here; major threatening behaviours from staff who are aggressive when patients don’t conform to what they want.. there are signs everywhere that threaten patients with non compliance they will be removed/denied treatment/charged. The staff take these policies to the nth degree - patients are clearly afraid a lot of the time. So I think there’s little concern from these institutions regarding actual patient welfare - hence why we never get to see a social worker. I’ve been thinking to reach out to former patients and catalogue experiences…at the moment, there’s an actual governmental enquiry into the traumatic experiences had by people in health services…that’s how bad it is.
Submissions are being taken, and passed on to the inquiry; stories from people, and the families of those who didn’t make it (those who had families).
I’ve written a submission, and have offered to appear anonymously in front of the inquiry panel (I’m afraid of bias against me if I identify myself and need to go back to a public hospital), but I want the govt to know what a festering pool of corruption that is what is called the health system.
We do our best to laugh it off, sure; but beneath the not quite comfortable grin is fear and trauma, unfortunately.
My degree is occupational therapy, and I always tried to do my best in a corrupt system - seeing many things that made me not able to sleep at night in the short time I was exposed to the system and the staff as a worker (I just never went back). I wish squeaking was a safe endeavour, and I appreciate the prima facie approach but it’s not safe to assume that that kind of approach will work amongst such corruption and dare I say abusive institutional environments. However, I do squeak from a distance, as a systemic advocate, from the safety of behind my computer screen 🙂🙌🏻