Need someone to talk to

[lovemesomeflowers]

I am new here & have several questions.I had my right kidney removed 20 years ago because of cancer.Now I have cancer on the left one,it will have to be taken out to.had a port put in, in Jan.had it taken out 2 weeks ago.Dr's had not decided on treatment at that time.How does one deal with no kidneys?I am scared out of my mind as to what is ahead for me.I know liquids are limited,I know nothing about diet.I also have a spot of cancer on my pancreas,it is the slow growing kind, the spot will be removed at some point.& I have a pacemaker,chf,afib,hbp.Even with all the problems I have, I still feel pretty good will be 73 in a few months.

[Bassetmommer]

Hi Lovemesomeflowers,

When they took out the port, did they tell you why? Are they going to replace it. Do they feel the cancer on the other kidney is not progressive or are they going to do something to remove just the cancer?

These are all very important questions you need to ask the doctor. NO, you cannot live without a kidney or dialysis. And to do dialysis, you need a port of some sort for whatever dialysis program you are choosing.

I would be highly concerned that your health care team is not communicating and allowing you to be scared. You as a patient have the right to know what treatment options are available and YOU get to have input on them. You need to be much more proactive.

You need support on a diet that works for you. Can you get a renal dietician referral? What are the plans for treatment for the other cancer locations. These are all things you need answers to. Is there someone in your family or a friend who can go with you to doctor visits to help support you and listen with you to the doctors?

Don't settle for this lack of good care. YOU deserve better.

[lovemesomeflowers in reply to Bassetmommer]

Thanks for the reply Bassetmommer,my port was taken out because it had not been used & at the time, my Dr had said the kidney would not be removed.The Dr's apparently got together & decided it would be best to remove it.I did call my nephrologist to get in touch with my urologist & see if I could get a fistula now, so it could be cured before I have surgery.The spot on my pancreas is very small it can be removed,when I dont know.maybe during the kidney surgery.As for the diet I will ask, as I go for appointments.I will get a family member to go in at my next appointment. Due to the covid virus I really don't want to ask someone to go in with me.

[KidneyCoach NKF Ambassador]

You have a lot to process, give yourself time to breathe deep and think. I had both kidneys removed 13 years ago and I have adapted to the necessary changes. You can too. Please make a list of concerns and questions to ask your doctor. Check out these sites for information on dialysis, treatment options and more.

mydialysischoice.org/

kidneyschool.org

Also ask for referral to RENAL dietitian.

You've got this. Blessings

[lovemesomeflowers in reply to KidneyCoach]

Thank you so much, for your encouragement. I am beginning to have hope& I will check out the sites.

[lovemesomeflowers in reply to KidneyCoach]

I did visit the dialysis center I will be going to near me.I have a good friend who works there& she took me on a tour & explained just how it works.I felt much more confident after talking to her.They have a dietitian,social worker & several others to help patients.I can do this if I make it thru the surgery.

[Jayhawker in reply to lovemesomeflowers]

So glad you visited a dialysis center. It’s also great that you have a friend who works there. For me, not knowing what’s going on is the big issue. The more I learn the more I can prepare myself for the changes coming my way. I’ve put a note on my bathroom mirror; I’m reminding myself every time I’m in the bathroom that dialysis is s life saving treatment.

Jayhawker

[07gmctruck]

i have been on hemodialysis for 5 yrs.i have 0 kidney funtion because i have lupus..i go 3x's a week for 4 hrs a treatment.YOU ARE NOT ALONE.i go to a dialysis center.they have become my second family.they are caring and i feel i get the best care possible,my doctors are great and very caring.i feek lucky to have them.it is only natural to be scared until you get in a routine.they will help with any questions you have.i do my best not to feel sorry for myself and i try to go there with a positive attitude, there are people worse off then me..i won't lie to you, there are a lot of times i am tired of it.a lot of support helps.so have faith in your doctors and you will have to make some life changes.everyone feels different after a treatment.have faith,trust your drs.after awhile it is routine,don't be afraid to ask questions.i'm still asking questions.you may find out it's not that scary.good luck and god bless