Support : Goodafternoon everyone , this is... - Kidney Disease

Kidney Disease

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Shaneshaanderson28 profile image

Goodafternoon everyone , this is week 2 out the hospital & on HD .. I can say I am feeling as my doctor said I would .. it's just some days when I come from getting my treatmentim sluggish and can't wait to get home but the next day I feel good . I'm still tryna get use to this I know this is something I HAVE to do to live for my kids💙💜💜 I don't have alot of friends and my family (let's not get me started) so I'm coming on here to get some help and some support from you all here ?? Also can someone send me some support group please & thank you

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Shaneshaanderson28 profile image
Shaneshaanderson28
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15 Replies
tas1kubra profile image
tas1kubra

Hi Shane, welcome to this community. It’s great that you are here. Because even if you have a big family, you may not have people with kidney disease around you. That still make a person feel lonely.

I have FSGS, aka chronic kidney disease. It’s almost definitely progresses to kidney failure if not treated, which is my case. I am not currently in kidney failure level, but preparing myself.

Nevertheless I found out about my disease 4 months ago, when I was about to move to Denmark. For me it recked my world. Because for years I have been trying to move to Europe, and when I had the chance I found about my disease. And my family, my friends, my doctors… everyone told me to cancel my plans.

Well guess what… I moved despite of every opinion around me, and despite of my disease. This is the third month I am in Copenhagen, and I am enjoying so much of my life regardless my disease and my limits.

But that was all thanks to this platform.

I had huge support here. People shared their stories, and that gave me power. A power more then anyone around me could give. People told that they swam, ran, travel until their limits. If it was up to doctors around me probably I would never move at all. I would be at home, waiting to die (that was the atmosphere that my doctors created, not that it has anything to do with the disease).

To sum up, you are in a great place right now. I am sure there are lost of people that you can connect and get support. By the way cudos on three children 👏👏👏 I am married for 1 year, and doctors do not suggest me to have a kid. It’s great that you have three children ☺️

Ziggydoodah profile image
Ziggydoodah in reply to tas1kubra

Wow Tas1kubra. I remember when you posted here at the start. You were like a lost soul. I think we all recognised the way you were feeling. It was lively to read your reply there. The difference in your post and attitude was amazing. Your strength is shining through. Wishing you all the best xxx

Ziggydoodah profile image
Ziggydoodah in reply to Ziggydoodah

lovely *

tas1kubra profile image
tas1kubra in reply to Ziggydoodah

thank you Ziggydoodah :) it was all thanks to every one of you. Definitely so much changed in my life, and in my head. I am not afraid of it anymore, but sincerely it was because of you.

But do you know that... Doctors here think otherwise. They said that you are not in such a desperate situation. They think my disease is in remission right now, and when/if we see it starts to progress, then we will start immune suppressive medication. Also, they added that, if my situation keeps in remission for 6 months, they support me in trying to have a baby :)

You had to see me after my first visit to a nephrologist here. In the middle of the disease, and everything going downhill in my life, I bought the one-way ticket and came by myself. My husband did not get his visa back then, so I was all alone in Copenhagen for two months.

I started to work, I found a house to rent (which is almost an impossible thing, but I was lucky, I found a house in one week), I rented a bike and started to bike 20 km per day... Then the visit day to the doctor came. I went there alone again, which was remarkably hard for me. And in the doctor's office when she told me not to worry so much, I might have children and I am far from kidney failure... I cried. I cried so much. For 4 months my life was hell, and the doctor was telling me the opposite of what I endured.

She warned me that I have to be open to any kind of risks on my way. It's okay now. I can accept now. Because they are not treating me as a lost cause. They are supporting me, which gives me strength.

But honestly, it is thanks to every person who took their time and shared their story with me. I can never put its meaning for me into words. I have never felt stronger in my life since I came here. But I didn't hear each one of your stories... I would never believe that I can do this much in my life, and have this disease also :)

Countless gratitudes, and greetings from Copenhagen :)

Ziggydoodah profile image
Ziggydoodah in reply to tas1kubra

To quote Billy Ocean..When the going gets tough, the tough get going 🤣🤣🤣..i think this applies to most of us on this site. I think when we are initially diagnosed it knocks us for six and sends us to a very dark place. Its a very lonely and frightening time. Friends, family and even health care professionals can be supportive but can never fully understand how vulnerable we feel. To do all that you did was amazing and I applaude you. Keep doing what you are doing, especially the cycling ( you put me to shame. I love cycling but my bike is getting rusty in the garage 😔😔) Think you have inspired me to get off my lazy backside and get cycling again 🤣🤣. If you keep this up, im sure you will have your much wanted baby. You will be a great mum. So fingers crossed and sending you big hugs x

Denise-80 profile image
Denise-80 in reply to tas1kubra

tas1kubra - Reading your update here made my eyes water. You are a strong person for sure. I’m glad you are doing so well. Moving was a good choice. I’m so happy for you.

tas1kubra profile image
tas1kubra in reply to Denise-80

Thank you Denise :) I feel much more stronger now. Even accepting that I will get a transplant in the future does not scare me anymore as it was back the other days.

Thank you all for being there for me, on my weakest moments :)

KidneyCoach profile image
KidneyCoachNKF Ambassador

There are oodles of support groups on Facebook. Just type in dialysis or transplant or kidney failure and you will have many to choose from. Lots of organizations like

AAKP

NKF

AKF

HDC

HDU

Also check out kidneyschool.org and the book available on Amazon kindle

Blue and red
WYOAnne profile image
WYOAnneNKF Ambassador

Go to the NKF's website kidney.org and go to SUPPORT. There is a PEER MENTOR program that I have been a part of. Find out about the program and see if that is something you would like.Also check out the KIDNEY SCHOOL kidneyschool.org

Take care and hope you continue to do well!

Ziggydoodah profile image
Ziggydoodah

Hi Shane. I have just under 3 months on HD. Still trying to get my head around it. Its not easy. Some days you just take it all in your stride and other days you just question everything and how the hell did my life come to this 🙄🙄. I think with everything on our kidney journey, its more the fear of the unknown. This community has been great. No matter what you are experiencing, someone has been there too. They are also very knowledgeable, more so than some of my medical team 🤣🤣🤣. Sorry i could ramble on for longer but have to go and get ready for dialysis 🤩🤩

bls1 profile image
bls1

Hi Shaneshaanderson28, I am just starting this journey and if you ever need someone to talk to, I am happy to be there for you.

JADAkiss profile image
JADAkiss

Hey I'm 47 but was diagnosed wit ESRD at 16 it was a very rough transition for me being so young n so sick but just have faith I too don't have a good family support so finally getting the chance to really chat wit a person who knows what I go through is very helpful watch ur fluids an sodium intake the key for me was limit what I ate n hw much of it if I did go overboard say on take out today switch it up the next few days I got a transplant that has now failed n I'm bk on dialysis I self cannulate preserving ur fistula or graph is key also as for what they remove I'm vocal to how I feel n what amount of fluid should be removed.

Rosemary201 profile image
Rosemary201

(Hug)

alport45 profile image
alport45

There is a good support group meeting by Zoom at Renal Support Network. (rsnhope.org). The group is mixed, with people at various stages of CKD; some on dialysis. some with transplants and some just diagnosed. I have had kidney disease my whole life but just a year ago went on peritoneal dialysis. The support group offered by RSN has been a great resource for me feeling not alone.

Shaneshaanderson28 profile image
Shaneshaanderson28 in reply to alport45

thank you so much ..❤️

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