Hoping there's no need to worry.

[MaggieSylvie]

I haven't seen my haematologist since before Covid struck the world. I've had phone appointments every 3 - 4 months and now my appointment has been brought forward and is face to face. Thursday. My partner is coming with me because I have to drive him to his appointment afterwards. Should I take him in to the consultancy with me? He's never been to any of my appointments before. To my mind, both Haemaglobin and platelets are doing ok but I'm ignorant about other aspects of the blood tests.

[hunter5582]

I think there is no right or wrong answer to your question. There is what feels right to you. Many choose to have someone accompany them to appointments, especially if they need support or would like to have another set of ears to process the information.

[MaggieSylvie in reply to hunter5582]

Thanks, Hunter. His appointment has been canceled so there is no reason for him to be with me in the car with me. I am not expecting anything new from my Haematologist. But who knows?

[hunter5582 in reply to MaggieSylvie]

Hopefully nothing too new but very nice to be back face-to-face. The communication is much more effective that way. You have a complex case and would like benefit from being seen in person.

Definitely plan to take a list of your supplements and current medications with you. I always double check that the doctors have my list correct at every appointment. I also go with a written agenda that includes all updates on my health and a list of questions and issues I want to discuss.

Please do let us know how things go.

[MaggieSylvie in reply to hunter5582]

I don't think there's anything new in the MDS/MPN scenario. I have a new compression fracture and my partner is almost completely blind now so everything is just chaotic and painful, not to mention depressing. Oh, and I have apparently got CKF.

[hunter5582 in reply to MaggieSylvie]

That does sound like rather a lot. One potential brighter note - A couple of years ago I flagged with possible CKD. We did a thorough analysis with a nephrologist. I had a couple of kidney cysts, but nothing significant. The bottom line was that older kidneys are not as efficient as younger kidneys. You need to drink more water. I thought I was drinking enough, but making a concerted effort to increase plain old H2O retuned my kidney function numbers to an acceptable level.

Wishing you similar success.

[MaggieSylvie in reply to hunter5582]

Oh dear! That's what I suspected. I have liver cysts. Not sure if I have them on the kidneys, only that one is smaller than the other. I don't know what creatinine does but it's been consistently out of range and at 90 right now. I suppose there are plenty of people with kidney problems that don't have tests, so can't know!

[hunter5582 in reply to MaggieSylvie]

"Creatinine is a waste product that comes from the digestion of protein in your food and the normal breakdown of muscle tissue. It is removed from the blood through your kidneys. Everyone has some creatinine in their blood, but too much can be a sign of a possible kidney problem."

"Creatinine usually enters your bloodstream and is filtered from the bloodstream at a generally constant rate. The amount of creatinine in your blood should be relatively stable. An increased level of creatinine may be a sign of poor kidney function.

Serum creatinine is reported as milligrams of creatinine to a deciliter of blood (mg/dL) or micromoles of creatinine to a liter of blood (micromoles/L). The typical range for serum creatinine is:

For adult men, 0.74 to 1.35 mg/dL (65.4 to 119.3 micromoles/L)

For adult women, 0.59 to 1.04 mg/dL (52.2 to 91.9 micromoles/L)"

kidney.org/atoz/content/ser...

Note that the reference range for creatinine may vary somewhat.

There are other kidney function numbers than need to be evaluated. I would expect that there would be additional testing that needs to be considered (see referenced website). Updated imaging may also be indicated. Your care team can best advise you as to next steps.

When my kidney function (eGFR) was in question, my hematologist immediately referred me to a nephrologist for evaluation. It took a few months to get the tests done and interpreted.

You are correct that that are lots of people with mild asymptomatic CKD who do not even know they have it. It may be that a random CMP would be the first sign of an issue. Very similar to how a random CBC is the first sign of a MPN.

Wishing you all the best as you move forward.

[MaggieSylvie in reply to hunter5582]

Thanks, Hunter. My appointment has been postponed until the end of January. I was under the impression that it had been put back to the original date. Wrong! But my partner had some very good results from his visit and then we had a successful shopping trip to Roy's in Sudbury. My creatinine is mostly in the same ball park but erratic at times. I have taken your advice and I have a large glass of water beside me.😊

[hunter5582 in reply to MaggieSylvie]

💧💧💧💧Water is good! Shoot for a minimum of 64oz/day. Sadly, delightful adult malted or fermented beverages do not count. Drink more on the days with heavy workouts at the gym. 🏋️

[Mazcd Partner MPNVoice]

hi Maggie, it can help to take someone with you to a consultation, as Hunter says, another set of ears to process the information can be very helpful, especially as you haven't seen your consultant in-person for such a long time, you will probably have a lot to talk about, so if your partner is happy to accompany you, then take him with you. Hope it all goes well. Best wishes, Maz

[MaggieSylvie in reply to Mazcd]

Thanks Maz. His appointment has just been cancelled so I don't think he will be coming with me. So far as I know, it'll be a routine appointment where we discuss medication and blood counts. I'd better take a list of supplements with me. It may also be to discuss my kidneys, one of which is smaller than the other, and I've been informed I have CKF so she may want to tell me to drink more water...

[jointpain]

My wife insists I go with her, as support and to ask questions she's reluctant to ask.

[MaggieSylvie in reply to jointpain]

My partner isn't really interested in supporting me. He would probably fall asleep. But I would like him to know that my condition is somewhat serious, though I have no idea if things will get bad for me in the matter of cancerous blood cells.

[mark382]

I haven't had a face to face appointment since before covid. All done via phone every 3 months or sooner if I do t feel well. I've been told that I can request a face to face if I wanted one. One haematologist, who was covering for the one I normally "see" who was on maternity leave arranged a face to face as I was always tired. Just wanted to check they weren't missing something. Maybe they want to see you face to face, just being thorough as they do t know how you are looking and general health. I'd take someone with you if you are concerned. I'm sure all will be fine.

[MaggieSylvie in reply to mark382]

I think that needing to see how a patient looks should be the main reason for a f2f . I'm not concerned; I just feel that my partner sometimes needs reminding that he is not the only one with health issues and he needs someone else to tell him to be kind.

[mark382 in reply to MaggieSylvie]

OK.

[Spanelmad]

I had appointment yesterday and was told they're trying to get all appointment s back to face to face

[MaggieSylvie in reply to Spanelmad]

That's good to hear. I heard today that they're trying to get everyone in before Christmas too!

[ainslie]

another useful option is to record the consult if you can, it’s interesting what you hear on re listening that you missed the first time,

[MaggieSylvie in reply to ainslie]

That's a good point. Thanks.