Rollercoaster

[Mgus57]

M.G.U.S. 57 I'm at stage 5 of F.S.G.S. kidney disease. This kidney disease is very aggressive I have all my life and did not know it. I was diagnosed with it about three years ago. I also have a blood disorder called M.GU.S. This blood disorder makes me very anemic. I have to have a blood draw and infusion every two weeks. I have been battling both of these diseases since I was ten years old. This road has been hell and going to get tougher. I have surgery for dialysis catheter next year. I will need faith hope and strength from anyone who will help.

[Sophiebun11]

Hi,

I too have MGUS, I was diagnosed about 10 years ago after my mother died with non-hodgkins lymphoma and I was having bone pain and other blood cancer symptoms. So no telling how long I had MGUS before, it's not something that would ever show up on a routine blood test as you know. It can also affect and lodge in the kidneys with the bone marrow not working right and sending out all those bad cells.

You may have MGRS which is for Renal Significance. The MG is the same.

I wish you the strength you need to get through this. Best of luck with your catheter and dialysis. The dialysis will help you to feel better even though it's scary.

Have you joined the Dialysis Forum here on HU? They can give you a lot of info and support over there as well as here.

Hugs and best wishes to you for next year and what you'll be going through. I know you've got this, look what you've dealt with already!!!

Stay strong.

🐇❄️🐇

[Mgus57 in reply to Sophiebun11]

I thank you for your comfort and support. Please stay in touch Happy New Year and God bless you.

[drmind in reply to Mgus57]

Praying and hoping for the best for you. I'll keep you in my thoughts and look forward to your future posts. ❤️

[Jayhawker]

I’ve been hovering on dialysis’s door since the first week of January 2017. My GFR suddenly plummeted from very low stage IIIb to stage V with GFR of 8. I wasn’t put on dialysis which really surprised me.

Over this past year, 2021, (4 years later) we’ve seen a gradual and unexpected improvement in my renal function so after years of worrying about dialysis it looks like I’ve got a few more years befor “D day.” I’ll be doing PD dialysis when they time comes.

Wrapping our brains around dialysis seems to be critical. Working with our dialysis team to assure the best experience possible with dialysis seems also to be critical. My nephrologist kept assuring me that when it was time I’d feel much better on dialysis. I’ve heard the same from so many in the dialysis forum here. Fear of the unknown seems to be a major stumbling block as well. They all say that it was much better than they had feared.

So, please join the dialysis forum. Also, let us know how it’s going. Sending you nothing but good thoughts… We’re all kidney warriors. You are too. Don’t sell yourself short. Dialysis is a life sustaining treatment.

Jayhawker

[Sophiebun11 in reply to Jayhawker]

I'm so happy to hear you get to delay your "D Day", Jayhawker. All my best to both of you. Hearing of someone else's reprieve can be very heartening!!!

[nascar4433]

I'm sorry to hear of what you're suffering. Sending prayers for you to remain strong in the face of adversity, and that your upcoming procedures & dialysis go smoothly and help you feel a little better. I think all of us on this forum struggle from time-to-time with the mental aspect of our various stages & diseases, but know that this Community is here to support you and assist any way possible from our own experiences. May you be blessed beyond what you may think possible, in every way. Kindly and with best regards...

[RoxanneKidney]

Very sorry that you have to be on this painful journey. 🙏 Do you have family support?

[Bassetmommer NKF Ambassador]

Hello Mgus57. Sending you prayers and strength for your journey. Being brave is hard work but you sound like you have a strong will and good attitude. Wishing you the best.

[RonZone]

Looks like I'll be starting PD sometime in March, so I share your road, as so many others have done. As mentioned by nascar, the mental part leading up to the actual dialysis event has been the biggest surprise for me. I can usually handle pretty much anything that's thrown at me, but this extended "waiting" for the event has, to be honest, caught me by off guard a bit. I can't say I'm dreading the event. It's a bit like the anxiety you have when you go on an actual rollercoaster, like at Six Flags, and it pulls you up the hill ever so slowly, and then at the top it seems like there's a pause that lasts forever before the thing releases and flings you down the track at an ungodly speed, with your stomach up in your throat. I've been on that slow climb for 2 years now since my Neph announced to me that I was "there" at stage 5. Like Jayhawker, I managed to so a few things diet wise that postponed the event for a while, but the event is now just around the corner for me. I've got a couple more things on my bucket list that I want to do before starting, so that's giving me the energy to hold off for a tad longer. So far so good. But the top of the track is definitely in sight now. So jump on that dialysis forum and continue to contribute to this forum. You have no idea how valuable and helpful and mentally supportive it is to know you're NOT on the rollercoaster alone. That's what's been my saving grace and how I've managed to handle the anxiety of the climb with a tad of grace. These folks on here are as graceful as they come. And extremely knowledgeable. You can ask anything. No such thing as a dumb question. And you can be sad, anxious, confused, disoriented, or humorous, or silly or even a tad nuts on a given day, and it's all accepted, no judgments given as long as you are sincere in your comments. So link arms with these folks and the ride isn't nearly as bad as you might imagine. Mine isn't, cause I know the folks ahead of me on the ride and those behind me are all sharing it with me. They will with you as well. God bless. Stay the course.

[nascar4433 in reply to RonZone]

RonZone...what a beautiful post. Thank you. I like the roller coaster analogy...very well stated, and the visual in the mind's eye is perfect. Hang in there. We'll be here to support you. Please keep us updated as the time grows closer so we can lift additional prayers for you that can be more specific.

[Tony_Mimicted]

Dont ever give up!!! We'll make it through

[Chimama]

Will be praying for you you best of luck .

[RhenDutchess123]

I was afraid to start Dialysis...then I became more afraid to not start Dialysis..Then you become thankful for Dialysis..

Then you begin to feel so much better on Dialysis...and you sleep so much better...and your diet changes to include all the Protien you can eat...and you are given Iron Injections...and so many other food options are again okay for you to eat....all these things we were never allowed in order to hang on to our dwindling GFR's....while the rest of our organs and muscles and bones just go along for the ride..Then you stop fearing Dialysis...and realize that Dialysis is your Friend..

I no longer call it Dialyisis...

I call it my Beauty Treatment

[Mgus57 in reply to RhenDutchess123]

Thank you RhenDutchess123 for your support. I will take your words into consideration. I will be starting dialysis in a couple weeks at home. I will let you know how I respond to dialysis. Thanks again God bless.

[RhenDutchess123 in reply to Mgus57]

You are welcome...what type of Dialysis are you going to do ?

[nascar4433 in reply to RhenDutchess123]

What a terrific post and way to look at what is an overwhelming process. Your positivity comes through loud and clear! I love that you call it your Beauty Treatment, and that you're able to feel more like a "normal" person againbnot having all myriad restrictions to maintain as much function as possible. Have a wonderful 2022 please.

[RhenDutchess123 in reply to nascar4433]

Thankyou nscar4433....So far, Dialysis has been a very positive experience for me and I hope to calm someone elses fears because I remember how that was for me....Most of what we fear never materialized anyway...and I think if you take the "Bull by the Horns" and own it, the control over our circumstances , some is given back to us...After a few months on Dialysis I was putting on my make-up and realized the bags under my eyes were barely there and my skin was starting to glow again.. and I decided this was a Beauty Treatment...Blessings