Trouble Dealing with End-stage kidney Disease - Kidney Disease

Kidney Disease

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Trouble Dealing with End-stage kidney Disease

Acardet profile image
7 Replies

I'm 32 I was told I couldn't get pregnant I got married last year and got pregnant throughout my pregnancy my kidney failed while was 5 months pregnant Drs told me throughout my pregnancy that if I had my baby I would die or my baby would die but I took the chance because I felt as if she was my miracle. My creatine was a 4.8 when the Drs put me on hemo dialysis instead of 3 days a week I went 6 days a week. At week 29 I had a c section and guess what we both made it. I thought after the pregnancy my kidney functions would go back to normal since it failed bc I was pregnant which the Dr said was possible but No the kidneys got worse and so I remained on hemo dialysis instead of 6 day I went 3 days and only was on the machine for 3 hrs months passed and the Dr finally diagnosed me with End Stage. kidney Disease of course which was depressing but I stayed positive a couple of months later the Dr started talking about peritoneal dialysis ( dialysis at home ) Dr/ Nurses told me it wasn't painful and I could do it while I sleep at night and save the trip to the center I thought about it and went through with it because it was convenient being that I had my newborn At home with a husband whose work hrs didn't mesh with help dialysis hrs. I had my surgery for the P.D catheter and at first it was painful whenever the machine would start to drain the fluid the nurse said it was normal bc I just had the surgery that that pain would go away but no it hasn't and it's super painful and another pain I feel is when air bubble gets in the machine I get an excruciating pain that attacks my rib and radiates to my shoulder and it happens sometimes. I recently have been doing test to be put on the transplant list but the wait is 3-7 years of in an get a donor I can get it sooner they say .I been through a lot of surgeries and transfusions and hospital stays and I've tried to be strong about it but I'm at my breaking point it's just too much to deal with I'm tired of people feeling sorry for me or being told things will get better when they only seem to get worse I'm tired of being in dialysis pain and feeling weak my appetite is gone I barley urinate. I don't know what to do

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Acardet
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7 Replies
Sammi_n_Munk profile image
Sammi_n_Munk

Hello Acardet. I’m truly sorry to hear about all of the distress you’ve been in lately, and especially now being newly married, and with a newborn baby to care for. (Congratulations to you and your husband for such a wonderful blessing). Perhaps you should be speaking with your care team and express your concerns about this pain you’ve been getting with the dialysis. I must admit, I don’t know much about dialysis, but I have never heard from anyone who is on it, that it involves pain. So that is definitely one thing that I would advise you to speak to your nephrologist, or even your PCP about. You shouldn’t have to contend with painful dialysis treatments.

I wish that I had better advice for you, or something more that I could help you with. Please remember that, anytime you may feel overwhelmed, you can come here to vent, or sob, or ask for some suggestions. Unfortunately, that’s about all we can do for you here, is offer you some strength when times seem low, and wisdom, hopefully helpful enough to ease some of the anxieties that often come with CKD.

I will keep you in my thoughts and prayers, dear. Please do keep us posted on how you’re coming along. I wish you all the best. Take good care of yourself. God bless. 🙂

Acardet profile image
Acardet in reply to Sammi_n_Munk

Thank you I reached out to my DR and Nurse about the pain they did a kub to make sure it was in its right location and it was they have increased the fluid they leave in me and it’s still painful

BigBilly profile image
BigBilly

I believe Sammi is spot on. There is no reason you should be suffering from peritoneal dialysis. For the record, I am a male 80 years of age with CKD4. Right kidney removed in 2016 due to cancer. Wish I had the answer for you, but I don't. As for transplant, I'm aware of what some creative souls have done successfully ... such as wearing a T-shirt that says "I need a kidney." There are some individuals who aren't related to you who are willing to donate. It's usually not a direct donation, rather the transplant docs set up a chain. Your

donor's kidney goes to another recipient so that you get a biological match from another donor. I personally know of one such chain transplant. Amazing love! Best wishes!

Acardet profile image
Acardet in reply to BigBilly

That’s not a bad idea about the shirts I will try that but with this pandemic I doubt I will get any response from it. I heard about the chain I hope my family that said they will donate really comes through and do it

Worrylady profile image
Worrylady

I started with PD 2 years ago, and it gave me a lot of problems. The water ended up in my lungs and we don’t know how. I decided to change to hemodialysis after only 6 months on PD. I’m now getting used to hemo 3 times a week. My problem too is accepting this new normal, being sick all the time. What helps me is talking to people who is on dialysis like us. I try to find ways to feel better like eating the right food and getting exercise. The bad days are when I worry a lot. Everything will get better, prayers help.

Sammi_n_Munk profile image
Sammi_n_Munk in reply to Worrylady

You certainly have my prayers coming your way, dear. Stay strong. We’re here for you. All my best to you. 🙏🙏🙂👍

Acardet profile image
Acardet

Hemodialysis to mee was better except for waking up so early to go to the center but I can’t go my husband work hrs interfere with dialysis times his schedule is all over. The port I had before for hemo was above my chest and they told me I couldn’t keep it there bc if I were ever to get an infection it would go straight to my heart the other option was the port on my arms but I refused because of my baby / husband work hours and because everyone I usually see with it has a lot of lumps on there arms and I have needles I'm so lost don't know what to do

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