Making it real

[PeaB4YouGo]

This is my first post here. I'm an ADPKD patient and have known it for the past 15 years. It's inherited, and my mother suffered from it when I was young. After a LOT of trips to hospitals and dialysis centers, she got a transplant in 1977. She died when I was 14.

I was always under the impression that I'd dodged a bullet because doctors performed an IVP when I was 12, and it came up negative for PKD. You can imagine how I felt, 30 yrs later, when an Ultrasound confirmed that I had the disease.

These days, my GFR is tanked. Yesterday, labs showed my GFR at 16. That's the lowest I've recorded. When it hit 20, some months back, my Nephrologist decided it was time to prep for dialysis, and she referred me to a Vascular Surgeon. I get an AV fistula installed on Mar 1.

Now it's real. I remember my mom getting her fistula installed. I remember going along with my mother for hemodialysis, three times a week, when I was 11 and 12. I remember the wait for a kidney. And now, it's all happening to me.

I remember my mom complaining that she looked fat. I could never figure it out, because my mom was not fat. Looking down at my stomach these days tells me that this is what she saw. My (and her) kidneys had increased in size so much that it pushed everything else in my abdomen forward. My grandkid told me I look pregnant. Smart ass kid. 😆 I'm told that this may complicate ever going on peritoneal dialysis because there will be less room for a port to fit.

I'll be around here often enough to complain about things. It's hard to do this when you live as far out in the country as I do. So, keep an eye out for me. You'll find me ranting about all sorts of fun crap.

G

[Beachgirl32]

good luck to you on his new journey in your life. I also have pkd and we weren’t sure I could do perineal dialysis . But had my catheter put in last Friday. The surgeon warn me that he has to get in there to see if there were room. Cause I had scar tissues also from other abdomen surgery. But there was room .So if you want to go that choice just saying you may be able to do it.

Welcome to the board I’m sure you will get lots of insight on here.Are you on waitlist for transplant yet with your numbers you would qualify to get an evaluation.

[horsie63]

Hi there. I don't have PKD but I live in the middle of nowhere also with the closest dialysis center 30 min away in another town. I got my PD catheter placed on the 12th and the surgeon made sure if I had scar tissue he'd remove it. I'm rather smallish so I was concerned but said no problem. I can understand the ADPKD as I have a genetic mutation that is affecting my vision and hearing but instead of AD it's mitochondrial and my daughter seems to have gotten it also. Aren't they making progress genetically for ADPKD?

[Mgt8]

Hi,

I also have ADPKD and didn't find out until I started suffering the symptoms. I have been on haemodialysis and was, after 1 year, lucky enough to have been gifted a transplant kidney from the donor list. This has changed my life.

It IS a journey, and a positive frame of mind really helps... although I know that there are always down days too.

My dad also had the disease and watching him go through it with a cheery attitude is something that has always inspired me. I used to help with his dialysis when my mum was too ill to do it. I liked helping and in many ways it prepared me for what was to come although I couldn't have known it at the time.

The best advice I can give is to be in charge of your own story. Your mum was very brave and I can so understand what you say about looking fat but sticking to a healthy diet and exercising does help to some extent. You also say "but she was not fat" Often others see us very differently to how we perceive ourselves...

You will get through this. Lots of us have.

Do keep posting on here; sharing experiences with others in a similar position is a great help in making your kidney journey successful.

Best wishes,

Mgt

[Arunachal]

Hi! I am on Peritoneal Dialysis for three and half years. I dont have ADPKD. Just CKD. Recently during ultrasound scan, I noticed my kidneys have shrunk considerably. We need space for 2 and half litres of fluid in abdomen. I am sure you will be able to do PD. Best of luck

[jcwalker]

I am on dialysis again after two failed kidney transplants. I appreciate your story. Food management was a problem for me. No one in my family talked about kidney problems but my dad had kidney stones as he got older. My brother gained 300 lbs. He was 5'9" and died at 54 years old. So I've had two children. One has stroke and kidney. The other has mental illness delusions. Praising the Lord for my husband their father who lives with us and cares. So we are in our 70s and have good health care coverage. Please beware of rheumatology doctors adding extra lab tests when unfamiliar with kidney conditions and medicare will not cover. Thank You heavenly Father.

[Starrstruck]

No worries, I live in the country also,it's over an hour to get any good drs.I'm not on dyalisis yet but probably will be soon,my gfr is 22.I like to complain too ,so we can do it together. Lol

[Aus01]

Wow your story sounds just like me right down to the age when it first started affecting me except it was my father (and his sister, brother and their father). I'm now the oldest person in my family with ADPKD with a younger brother a niece and possibly my own son with the disease so I try to project a positive attitude although there are times when it wears me down. I had a fistula at 59 and a left side nephrectomy nine months later due to size, bleeding cysts and to make room for a future transplant. I had to begin hemo a few months after that and have been doing it for just over three years now. I also live in a rural area and it takes about an hour driving to the dialysis unit followed by five hours on the machine three times a week. You just have to play with the cards your dealt but it sounds like you've got a good grasp on it and I think you'll do well.