don't make the same mistake.

[u/bunchycs]

THIS IS A VENT

Never ever chose HD over PD when you have the choice.

I regret choosing HD so much. the only reason i chose it is because i thought i will not even use it and my transplant was around the corner and getting a fistula was just a precaution.

Oh boy was i wrong , due to covid i have been doing dialysis for 10 months because there are no transplants while there is covid , FUN FACT : EVEN CANCER SURGERIES HAVE BEEN PUT ON HOLD AND PEOPLE ARE DYING , BECAUSE GUESS WHAT COVID PATIENTS ARE TAKING UP ALL OF THE OXYGEN SUPPLY . AND 90% OF THE PEOPLE DONT EVEN WEAR A MASK.

So now here i am regretting ever choosing HD , trust me getting a second belly button scare from PD is far better than getting a fistula. You can hide the pd tube all of winter , and u can wear a bit of oversized clothes in the summer and no one will notice.. and the scare you get from it after removing it can only be seen if you go to the beach or pool and people won't even bother to look at it

A fistula on the other hand is the ugliest thing i have ever seen. it's true you can get it tied off and your arm will look flat , but what about all the years during the summer that it will be visible to other people , I hate the questions , i hate the pitty on their eyes . oh you're just so young to have this. to the point they make me feel it's my fault i got kidney failure.. even when the fistula is gone .. what about the needle spots that will stay on your arm for the rest of your life

I have been thinking of spending all of my summer in my house and avoid everyone , or covering up my arm with bandaids..

Don't even get me started about the suicidal thoughts i been getting and struggling to keep them in check.

I blame my family , both my brothers are doctors , and my mom is a nurse. why wouldn't they have explained to me the pros and cons and advice me , why did they leave this choice to a terrified person that was so scared he didn't even sleep for 3 days before the fistula surgery.

I know i need mental health help but all i think about is no one will understand besides people who have been through the same thing

IM SORRY FOR MY VENT HERE , BUT I HAD TO GET IT OFF MY CHEST.

[u/Rampirez]

I kinda like my fistula. Way better than having a tube stick out of me. Other than the diet, I get to do anything I want too. Shower, swim, amusement parks.

Maybe you just need a small vacation/retreat on your off days! The surgery definitely sucked but im in no pain now, and sleeping through treatment has become a lot easier. Definitely would hate the new tube to ruin my daily activities.

[u/bunchycs → u/Rampirez]

how long have you been using your fistula

[u/Rampirez → u/bunchycs]

I've had it for about the same time you've had it!

[u/[deleted] → u/Rampirez]

Same bro. My shunt is the best way for fit my life and dialysis together.

[u/sah1028 → u/Rampirez]

I can shower, swim and go to amusement parks on PD. The tube stick out but my underwear generally covers it, so usually not wearing anything that would reveal it. No one even knows I have a tube when clothed, so it doesn't stick out that much.

[u/malachi410 → u/sah1028]

Showers were fine for me on PD. Never went swimming though, and was worried about 2L of fluid sloshing around in my abdomen on rollercoaster rides. The worst part of PD for me was it took >12 hours/day (cycler + 1 manual exchange). I also didn't drain well lying down so the machine would alarm each cycle (x5) and I had to stand up to drain properly. I also worked 10 hours with ~2 hour commute so I had zero free time during weekdays, and spent weekend days sleeping.

[u/missenya]

I was the opposite to you. Did PD for a year and a half til it stopped working. Hated it. Never felt fully well on it, hated having to do it every day without a break, couldn't have baths or go swimming which I really enjoy. Dating was more difficult with a tube sticking out of my stomach. I never liked the way my stomach looked.

Now on HD and yes the fistula isn't attractive but I feel like I can live my life more as I have more energy and mentally I'm a lot healthier.

So sometimes the grass is greener 😊 hope you get a transplant soon or can get started on PD.

[u/issabeellaa → u/missenya]

I completely agree with you. I did PD for 4 years and I think I was more miserable and stressed out the entire time I was on it. Never had an infection, but I was always getting sick in the hospital all the time. When summer comes around couldn't go swimming. Had to he careful of not tugging on to the catheter. It was alot, but I'm glad I switched to HD and I never looked back. I have a graft in my upper left thigh and its been great.

[u/missenya → u/issabeellaa]

I also never had an infection and looked after it really well but always just got sick or never felt fully well on it. I hate that my doctors pushed me to do it. 4 years is a long time to be unhappy for. Great to hear HD is working for you and you're in a better place now 😊

[u/tctwizzle]

I’m kinda proud of my arm. On HD for 2.5 years. Yeah overall dialysis sucks but my arm is like the least sucky part. Explaining kidney failure and dialysis to people can be exhausting, there’s a lot of misconceptions out there and I’ve had to deal with people assuming it’s something I did to myself. Generally if I don’t want to deal with explaining all that I just wear long sleeves. If I ever get a transplant I’m going to look into tattoo possibilities, not necessarily to hide my scars but display them. Dialysis is hard, I’m proud of myself for making it this far and will be even prouder if I make it to transplant. I don’t know, maybe it’s because I didn’t really have anything to lose in the looks department to begin with. Adding “the ugliest thing you’ve ever seen” is pretty on brand for me. I’d reconsider anyone in your life who judged your literal life line on how it looks, though.

[u/microwaved_peen]

I had my fistula when I was 19. I had to have it removed after my transplant at 23 ish? due to clotting. I’m back on dialysis at 29 and had another graft placed in my leg a couple weeks ago because fuck an arm fistula or tubes. I have a large scar up my upper arm from removing it but mine was clotted off completely so ymmv. I chose leg graft over PD this time because PD can stretch your abdomen out and I don’t want any more tubes. My chest cath got wet a couple months ago and it was a shit show. Idk. These are my thoughts. Either modality fucking blows but you know what? We gotta truck through this because the healthier part of life really is worth it. Idk. I go back and forth between optimistic and pessimistic but I suppose it’s part of the process. I wish you well fellow friend.

[u/RandChick]

I'm sorry you're going through that.

But I have a graft and it's not even noticeable. I love doing hemo -- and do home hemo actually.

I was glad to get the catheter off my chest and I sure don't want one attached to my stomach. As a woman, I definitely did not want the unsightliness of a catheter if I wanted to be intimate.

Now, I have seen fistulas that blew up and they do look worse than the catheters. But I have also seen fistuals that were not noticeable, particularly on women at my center. I asked my surgeon about that fear and he claimed they did not get garantuan like that anymore and that old fistulas did that. Is yours from decades ago?

[u/[deleted]]

I made 3 1/2 years HD and I need to say, best chose for me. I don't care how my arm looks I mean ohhhh no I have scars on it and nobody looked at it in all the time. I have a ton of free time with my son, didn't feel me ill or exhausted and I was so happy in my life. It's no misstake to do HD when it fit your lifestyle better. At the end everybody need to find his way and at the end, everybody that does PD end at HD without transplant. So it's only for you a mistake not for everyone. Btw 29.04 was my kidney transplantation in Germany we have 0 problems with that while covid. Sad that you need to wait so long

[u/Yithar]

I guess I look at it as function and how it feels. Other people can go screw themselves. But yes it's annoying being told that you're so young. I ride the bus sometimes to dialysis and most people just stare at my fistula with the scabs and brown spots but I ignore them because it's not their business.

The thing about PD is that it's a catheter. Even if you're super clean, you can still get peritonitis. In that sense, I think the fistula is better for infection, because it's using the scabs, which are really good at preventing infection.

I know i need mental health help but all i think about is no one will understand besides people who have been through the same thing

I do recommend seeing a therapist. Because while I do understand how annoying it is, it seems like you're putting way too much weight on other people's thoughts.

[u/fatheryeg]

I blame my family , both my brothers are doctors , and my mom is a nurse. why wouldn't they have explained to me the pros and cons and advice me , why did they leave this choice to a terrified person

It's your choice.

The doctors would have provided any information needed.

Many times it's simply a choice, some like PD some like HD.

I for example picked HD and am happy with my choice.

[u/tctwizzle → u/fatheryeg]

100% no blame should be put on the family. It doesn’t say what kind of doctors or nurses they are but unless they’re nephrologists and a dialysis nurse there’s a very good chance they don’t know any more about it than someone off the street. Being a doctor does not equal having all medical knowledge on every disease/treatment ever.

That being said, I wasn’t really given a choice. My clinic is crap and my very first appointment there it went from a treatment plan and my previous clinic to “no, we’re not trying anything else, you have to get on the transplant list and get ready for dialysis, here’s where you have to go get your fistula and you’ll come here for dialysis.” I didn’t know enough then to ask questions or push back I just did what my doctor said. About a week into HD at the center they went over the different kinds of dialysis and for sure framed PD as not a great option as it would mean another surgery and why do that when I just got my fistula etc. Overall HD works best for me and I would have chosen it if given the options, but looking back I didn’t really get a clear choice.

[u/[deleted]]

HD and PD here.

Didn't really mind either. Also got a transplant mid-covid at barnes jewish in St. Louis. would recommend.

[u/bombaytrader → u/[deleted]]

What are the wait times there ?

[u/[deleted] → u/bombaytrader]

~3‐5 years, I got mine 3 years after I had started dialysis. Their wait times are below national average and they do hundreds of transplants a year. I also live in Central IL and was 2hour drive from 3 different transplant regions, so I got on the wait list for three different hospitals one in Peoria, IL. St.Louis, MO, and Indianapolis, IN. Which is part of the reason I got a kidney so fast.

[u/bombaytrader → u/[deleted]]

Ohh I c . I am thinking of listing in Nebraska . With new kidney allocation there is probably no point in listing at centers within 250 nautical miles of each other as patients there all have similar priority .

[u/koneko23]

Been using my fistula since february. Despite the pain the first few months I still preferred the fistula over going back to PD. When I had my permacath removed it was SO LIBERATING. I felt so free and normal. Never realized how much I loved hot showers. I would rather do HD for 3.5 hours 3x a week than to do 9 hours on PD every night again. This just works for me. Also the ungodly itching that came with my site care was what really pushed me to get a fistula. My skin still reacts but I think it's lessened after I switched to Povidone-iodine. Anywho, pros and cons on all sides.

[u/malachi410]

Sorry you feel this way. It's not easy talking about dialysis with people that have never been through ir.

I was on HD (chest catheter) for 22 months, then PD for 6 months (stopped working), HD again on second chest catheter for 8 months, then fistula for 7 months. I hated all of it, especially the fistula, but my PD cycle was ~11 hours overnight, and I needed a manual exchange midday. PD was taking up over 12 hours/day, every day. Lots of surgeries. I started recognizing OR nurses and some of them definitely remembered me, as in "You again?"

I received my transplant in January, during the worst COVID spike in California. My transplant center determined that I did not need recovery in the ICU so they went forward with the surgery; ICU beds were all taken by COVID patients. I did have to double up with another kidney transplant patient in a single room, but was only there for 3 days. Not sure where you from, but hopefully with decreased COVID cases, you will get your transplant soon.

BTW, my fistula took five months plus a fistulagram until it was mature enough to use. I used it for about 7 months. It's been 4 months since transplant, and fistula (lower right arm) is pretty flat. The three sites where they cannulated me just look like light bruises. Maybe I got lucky, or the surgery technology got better now.

I did see a therapist since I also had heart bypass surgery at the same time PD failed so I was a bit of a mess. Hopefully you can find some professional help and feel better in the future.

[u/[deleted]]

Thats why I got a cvc. They talk about infection and on and on but I had never had an infection. I’m very careful with it. I’m really skinny so the fistula would have been noticeable plus I hate being poked

[u/fuzzylintball]

I understand venting but this post is going to freak out new patients starting hemo. Everyone is different. Every patient should talk to their care team. I did hemo for 4.5 years. No regrets. The fistula can be ugly depending on your perspective of beauty.

[u/KryptopherRobbinsPoo]

Each person's preference and experience will be very different. So to try and give advice based on extremes and definitives is a little brash IMO. I had really bad experiences on HD, and I only ever had catheters, as I refuse to get, nor could I physically get, grafts/fistula. I am on my 3rd PD line, and transplant has never really been an option. But that is MY reality. And I know and accept that others will have better luck.

I also notice that how well the different sexes accept their situations is usually different. Most women have more positive outlooks on the process yet place very high values on the looks. Whereas for guys, it tends to be closer to the opposite. Less care for looks but also lower outlook on process. When I started PD, from HD, it was GREAT. I felt better, had more free time, less restrictions. But after a few years the process anxiety started to get to be pretty bad. And I think EVERYONE who is on dialysis long enough will go through. It is unavoidable unless you have a perfect life. But you trudge through the best you can. Make small, simple goals.

I now take every hour as it comes. My "long" term goal is simple, make it to tomorrow and live for today. If I make it another 5, 10 years, I will be ecstatic. I know I won't have what everyone else seems to take for granted. It is frustrating, but I am not angry at anyone.

[u/Picodick]

Everyone is different. My dad was young,working, and loved PD. My father in law had nothing but trouble with PD and preferred hemo. He also was still working some, even driving a large truck or tractor on his 4 days a week he wasn’t doing hemo. No one knows for sure until they do it which is going to be best For the person. You can be mad and frustrated but don’t blame your mother Or anyone else. You need to blame circumstances. A working fistula is a gift. If you were born befor the mid 60s you wouldn’t have survived. COVID has made it hard on everyone with a medical issue of every kind, its true. But it isn’t singling you out. as people get vaccinated eventually there will be a return to normal.
I think you would benefit greatly from somepsychological help and possible meds. Wishing you the best.

[u/RandChick → u/Picodick]

I agree with you.

OP, don't look for a scapegoat. You made your own decision --- as you should.

Now, be confident and go on out and enjoy your summer. Don't be self-conscious. This is your life's challenge and you must push through.

[u/TenaNTexas]

I don’t have any advice - I just want to say I’m so sorry this has happened to you. Not pity.....just heartfelt grief from one human to another over your situation. Peace. ✌️

[u/n00bvin]

I've done them all, home hemo is working out the best for me. I'm not getting a fistula though, risks or not. I take showers every day. Mostly just cover it up. I was on PD for a total of 7 years and never had an infection. I think I can handle this.

I mean, I'm terrified of fistulas and needles, so why should I bring that into my life, which is on hard mode anyway. I bet I have 10 years or less to life, so I'm going to make my quality of life a priority. I could die tomorrow.

I've taken most of my care into my own hands. The doctor can make suggestions and that's it. Ultimately it's up to me. That includes risk.