Any helpful information

[Missingthesun]

Hi! I have had kidney disease for sometime. I am now in kidney failure/last stage. This is all very new to me. I tried to to get a fistula in December 2023 and it failed. I am now scheduled for an AV graft which I am dreading. Does anyone have one of those? I am not sure when I will start hemodialysis but it will be soon. Can anyone tell me any information to help me thru this new huge process like how you feel etc? I don't know anyone personally going through this.

[Bassetmommer]

Sorry you are having kidney failure. I will highly suggest that you take a tour of the center you are going to use and meet and talk with some folks there. It is a big life adjustment and being prepared and knowledgeable is very critical and will help prepare you for this part of your life. Find out if they have a patient group that might meet there. It really helps to talk to other people who are in your area who are going through dialysis.

Hang in there. You will get through it. And it is ok to be scared. But knowing what you are facing will help with the fear.

[Brekki in reply to Bassetmommer]

I had three attempted grafts, each going further up my arm, making home dialysis more difficult each time. The last one failed on a Tuesday and I got my transplant on that Friday.

So, if it does not work, I think you must get priority for transplant. Every cloud has a silver lining.

[Bassetmommer in reply to Brekki]

Nah..... doesn't work like that. Here, they put in a chest catheter.

[Missingthesun in reply to Bassetmommer]

Oh they do wow ok.. I work in oncology and most the time the patients get port a caths and I know we can not use those for dialysis (wish we could). Did that work out better?

[Missingthesun in reply to Brekki]

Hi Brekki! Oh boy that is what I am afraid of uugghh.. the surgeon did explain that could happen. That is wonderful news!! How are you feeling? They made some comments about trying to rush the process for transplant but I know how the system sorta works. I was like I am not as bad as some so I know this wont go quickly especially with the long work up. Thank you for that info! I am so happy things worked out for you. Can I ask how long you waited for a transplant? Is the AV graft painful in the beginning or more annoying through out the time?

[Brekki in reply to Missingthesun]

HI Missingthesun,

I think I am lucky in a number of ways. Firstly my transplant hospital is the Royal Free in London, England, who have a huge number of patients and do a lot of transplants.

I wanted haemodialysis because I swim, and my hospital would not go for peritoneal dialysis if I wanted to continue swimming. But none of the attempts to create a fistula worked (that was a worrying time for me, as well as wanting to be able to dialyse at home - I live some way from my transplant hospital and not all dialysis centres support home dialysis) I had been on the waiting list for transplant for 2 or 3 years (we go on the waiting list quite early over here), and I shall never know why I got the transplant so soon after the third failure to create a fistula.

Good luck. I hope you, too get a transplant soon. It will give youyour life back.

[Missingthesun]

Thank you so much for telling me that. I know I asked one center if I could but they said they couldn't show me the patient area due to Hippa. I was hmm Ok. I want to talk to more people in the area too but I appreciate any feedback. I am going thru evaluation right now for transplant. I know this is a lot for anyone and hard on those going thru it.

[Ziggydoodah in reply to Missingthesun]

I am on haemodialysis in Scotland. I have posted a few comments about my experience on dialysis. I am on my way to work so can't do a long reply. I'm not going lie and say its easy, it's bloody hard going mentally and physically. However you will start to feel better, i promise. It won't be immediately but you will get there. You have dealt with many things on this blasted journey, dialysis is just another hurdle, you will deal with. Read people's experiences on here. Even if you can't get a tour of the unit, you can read up on the procedures and protocols involved. Knowledge is power especially, when it comes to dialysis. Oh and make an effort to talk to fellow patients. They can become a massive support. They have usually been through the same worries and can offer advice. Our unit is quite a little community now. Reach out to people on here. If I didn't have this site, i dread to think how I would have got through the past few years.let me know if you have any specific questions. All the best.

[Missingthesun in reply to Ziggydoodah]

Hi! Thank you for your feedback. Its most helpful (from everyone). I have heard it really tough and I am worried how I will juggle dialysis and working full time etc. I cant afford to go part time or on disability. I know I have read a lot as my MD doesnt provide a lot of information. I am already having or started last year maybe with different side effects. People dont understand who aren't going through it. My friends kinda want to but they will never get this and it's not their fault (I need people around who do understand also). I will definitely reach out to those in the center. Are you currently on dialysis now or did you receive a transplant? I keep hearing about the itchy skin and I have some here and there but one of the MD's did tell me your skin can get really itchy. I am in shock that you can only have some much to drink in a day. Do you find that summers are harder? The vascular surgeon told me with the AV grafts- people tend to get more dehydrated in the summer etc. Thank you again

[Darlenia in reply to Missingthesun]

Yes, it's a great idea to visit a dialysis and acquaint yourself with the staff, the types of equipment, and so forth. It's highly likely you won't be able to arrange this directly with the center yourself because centers are actively work with patients. You're simply a stranger with whom they have no dealings. In our case, my hubby's nephrologist arranged for my hubby to visit the dietician working inside a center that he worked with. The dietician then introduced us to the machines, the staff, etc. I'm sure the dietician would happily introduce you to the social worker at that center who could direct you to a support group you can join locally. (We weren't permitted access to the large room where people were hooked up on the machines. So no visits, no chats with them.) Later, after my hubby went on dialysis, he told me the dialysis chairs were spaced too far apart from each other for conversation among patients. They could only visit with each other in the lobby when arriving or departing. A few months later, my hubby received a transplant. At the transplant center, the support groups there were moved online because of the pandemic. They've remained online since then. Simply be persistent. Ask your nephrologist and the social workers for referrals and also look for notices on walls, etc. Sometimes you find them in odd places. While my hubby was getting his transplant, I noticed the hospital's hotel had a support group for transplant patients! Imagine that - a hotel! So, you should be able to find support group if you keep at it. They might not be exist in the form or at the location you want, but they do exist, particularly in the online space. I hope this helps.

[Missingthesun in reply to Darlenia]

Hi Darlenia! I really apperciate the information! I feel like their is a lack of support (I know there has been) in the kidney world. There is plenty in oncology (where I work) but, I think this is why there can be a lot of depression etc. I dont see that people have the same level of support with kidney disease yet its very common now from my understanding. I did meet with the dietician and take a class but I did a zoom video with the dietician. That obviously didnt help as he said yes you can come in but we cant show you the room. I never thought about how far they space patients out especially with Covid. I know we do the same in oncology (well I havent seen the room in awhile for them). I will talk to the social worker whenever they let me. I know I am going to meet with one when I have big transplant appointment. I am so happy that your husband got a kidney so fast (it sounds like). That is really good news! I bet they information is in odd places. I know I found this online chat yesterday after looking for sometime but also because I have a friend who just received a liver transplant. Can I ask anyone does Medicare also support you when you go onto dialysis? I have a primary plan but I heard Medicare kicks in.. is that true for those who are working? I will need help with all the bills uugghh..

[Darlenia in reply to Missingthesun]

Medicare will definitely cover those who go on Medicare if needed. However, some insurance plans will also cover costs, at least partially. Suggest you call the insurance company responsible for your plan and ask for guidance. Then call Medicare and check in with them too. The dialysis and transplant centers will review coverages too. Both centers informed my hubby that his Medicare plan and supplemental plan were great. My hubby currently is only responsible for the co-pays for insulin and a blood pressure drug. He pays nothing out-of-pocket for his transplant immunosuppressants. Dialysis and transplant procedures shouldn't bankrupt you.

[Missingthesun in reply to Darlenia]

Ok thank you! I have a case manager now assigned to me with my plan and one of the centers called last year but thank you for the info.

[horsie63 in reply to Missingthesun]

I can tell you my experience so far but chances are yours will be your own. I started with PD in Feb 2023 when I got to eGFR of 6. That worked great and I was working and traveling until it didn't. In June 2023 it started failing, caused uncontrollable itching and tremors so bad I thought I had Parkinson's. In July I fell and hit my head and spent a week in the hospital...all the test done were negative.

August fell some more and ended up in the hospital. They tried PD with their machines but it didn't work either. So ended up with a chest catheter for emergency hemodialysis. That caused issues and I really can't remember what all went on in August but I did almost die. Spent 3 weeks in hospital and by the 3rd hemo treatment I was doing 100% better.

Sept I ended up back in hospital because the failed CVC on my right side was leaking blood and fluid into my lung cavity and I needed it drained. Another month in hospital.

Now I go in center for hemo and I work full time (desk job). I started with 3 days a week for 2:45 and now I do two days a week (Tue and Sat) for 3 hours. I've made a few friends there. The nurses and techs are all nice and answer my questions and I have a lot. I have them turn the machine towards me and I watch the numbers. Since I still urinate...a lot....I don't have fluids taken off. I feel pretty normal.

I am still trying to regain the weight I lost in hospital to get back active on the list. I go Mar 21 for an evaluation with them again to see if I'm eligible. I was active before I got so sick so here's hoping.

Again this is MY experience, everyone's different. Could be PD would work best for you if you want to continue working. There's a free book called Help I need Dialysis and it's a good read.

[Missingthesun in reply to horsie63]

Hello! OMG I want to give you a big hug wow!!! I am so sorry that you went through so much!!! Did they ever find out why all of that happened to you? I heard the itching could get bad and I am worried because heck what do you do but you had things really bad for awhile. That is really good to hear how much better you are now. Does the center you go to space you out to where it was hard to connect (I mean more in the beginning)? I will have a lot of questions I know that. Oh wow you go to the bathroom a lot (on dialysis). I do a lot now and its so annoying.. like even drinking a drop I feel like. Can I ask why you dont have fluids taken off? Is it because of the weight loss or your just not retaining fluids? I will probably end up on PD especially if I am waiting for years on the transplant list. I am kind of a complicated case but I bet many patients feel that way. Thank you so much for the info regarding the book and your experience! You made it! You are a solider/warrior! You have come so far...

[horsie63 in reply to Missingthesun]

Usually high phosphorus levels are the cause of itching and they will prescribe binders. Mine I believe was due to being allergic to the PD solution. They say that's rare but since I'm allergic to a lot of things and my phosphorus has and remains well within range that's the only thing I can think of.

There are a lot of people on here who have slowed progression with diet and exercise so that's possible. There are also many people who do PD successfully for years. I just wasn't one. There are also many people who do hemo for years successfully. I hope to be one until I can get a transplant.

Since I pee so much I don't retain fluid. I always ask what they are doing and make sure they understand how much I'm eating while trying to gain weight. We've adjusted my dry weight twice now.

The beds/chairs are spread out a bit but the ones in my little area are a bit closer so when I get there I say hi to the ladies on either side of me and wave to others. Some of the ones I got to know in the lobby area I'll go over and say bye when I leave and they are getting there. I do my best to be pleasant to everyone. Some just come, do their treatments and leave...no real interaction.

I don't really consider myself a warrior...it's just another challenge life throws at you. Funny thing is I was agnostic prior to August but when I think I was dying I saw God and talked to him and now although I still don't believe in organized religion I do believe there is a God.

[Missingthesun in reply to horsie63]

Oh okay that is good to know. I don't know why my MD hasnt told me some of these things but I guess because I havent had a ton of itching yet just some. My levels are kinda nuts like my PTH is incredibly high. Oh yes I just read about the binders well it was more of a comment. Do they give binders right away or maybe I dont quite understand them yet. Sorry I am trying to learn everything about dialysis. Yes, I have heard some people do well with exercise and diet also. Hopefully, I will be able to do that also. I know so many things are out of control. I guess its good you pee a lot.. that probably helps. Does that mean you can drink more than what I am reading about? It sounds like you are at a nice dialysis center. I want to be the same especially since I have seen so much on my end too. Isn't that funny how that happens regarding God/religion. I have heard some stories over the years being in healthcare. In the state I live in people are very careful to talk about things (quite liberal) and then when I lived in the south and obviously worked down there it was a lot different.

[horsie63 in reply to Missingthesun]

I found my neph and PD nurse to be utterly useless about the itching, kept telling me to use Benedryl which I did to no affect. It's possible if you only have a little it could just be dry skin.

I didn't get binders until my phosphorus was in the 6.0 range and only took them for about a month before it went back down. I watched what I ate, tried plant based, low protein but could not get enough calories. Currently I have no fluid or food restrictions but if I stop peeing that may change.

My center is an independent meaning not a Davita or a Fresenuis affiliated one. I live in a very rural area in OK so it's the only one unless I drive an hour to a bigger city. I live within 5 min drive to the center so don't want to change.

Here's what I do...I have an assigned chair and I go to that, take out my blankets (2) and sit. The nurse/tech will put the BP cuff on the opposite side of my fistula (not used yet). I turn on the chair heater. It's always so cold in the centers. The nurse/tech will hook up my CVC (chest catheter) and then clean/change the dressing on it. I'll have the nurse/tech turn the machine so it faces me and I watch the time count down and my BP rates. I'll have her turn up the temp on the machine to 36 centigrade. Then I look around for a bit or have the TV turned on, then I nap for a bit until it's time to go.

Some of the people there are on their phones doing who knows what. One lady has a laptop and I assume works. Others nap the entire time. There are two guys on the opposite side who joke around. I am buried under my blankets or I'd probably play games on my phone. When I'm done I drive myself home and eat as much as I can.

[Sinigang]

have you considered peritoneal dialysis

[Missingthesun in reply to Sinigang]

Hello! I have but for now I am going to stick to this. I heard you need a lot of room for the equipment and right now I am truly blessed to be working from home (even though I want to quit lol). I dont feel like I have enough room right now for everything. I was also worried about being in the house to often that I might lose my mind. I really want to do hemo at home but it sounds or it appeared that I would need a caregiver at home and I dont really want to rely on the two people that maybe could. I am not married or involved right now so its a lot to ask of my brother or my mom. I know that going in the clinic is probably going to get old fast. I heard you feel better the more you dialysis and you also feel better on peritoneal dialysis.

[Sinigang in reply to Missingthesun]

My husband did PD . They delivered at least 20 boxes of 5 liter bags . You have to set up the machine ahead of time to start warming up . Keeping that PD Cath site is very very important.Hemodialysis is hard on your heart . Up and down with blood pressure . That fistula once it is created needs to be monitored by Vascular surgeon every 3 months like your car. Needs some cleaning to keep it from working efficiently.

[WYOAnne NKF Ambassador]

The surgeon couldn't use my small veins to make a fistula so I had an AV Graft when I was on dialysis. It worked fine for me. When I was close to 12 years post transplant I did have a reaction to the tubing in my arm. My arm swelled all around the tubing and became painful. So, a surgeon removed most of the tubing. Except for some scars on my arm all is well now 24 years post transplant.

[Missingthesun]

Hi! Wow that is incredible! How are you feeling post years ago? Thank you for that information on the graft. Is the graft a lot different than the fistula? I have googled info on it and it doesn't look to horrible (yeah right lol). Can you swim on it or are there any restrictions? I am really happy for you. It sounds like things worked out. I will hopefully be on the transplant list soon. I am almost done with the very expensive work up. I cant believe how much I will owe in medical bills thus far (I have been going out of network- not smart). I havent even had a transplant yet uuugghh

[Winner76]

Hi,

I’ve done 7 years peritoneal dialysis , at home when I slept every night and hemo dialysis for 1 year through a line in my chest. I had a failed fistula aswell. I never suffered with itching at all and yes you do have to reduce your water. But you will learn to balance it all so you get too dehydrated too often. It wasn’t too hard just more annoying I got a bit fed up with it . I was quite laid back about the whole thing , it had to be done , it was keeping me well and I just did it. I’m sure you won’t be waiting as long as I did so keep yourself as well as you can so you’re ready for that call. Also power is knowledge!

Best wishes

[Winner76 in reply to Winner76]

Knowledge is power I was suppose say 😂😂

[Cabrilla]

My mom had a fistula that lasted 20 years before it failed. Then they gave her grafts which worked really well. Unfortunately she developed a clotting disorder so both her grafts failed and she's now on a chest catheter. Soon, we'll try an AV graft in her leg to see if the larger lumen prevents the clotting.

The AV grafts are pretty much the same as a fistula, except smaller. They sit under the skin so you can bathe, swim, etc.

I did dialysis for 6 weeks with a chest catheter before I finally got a transplant (I had a living donor so wait time was short). The dialysis team was very kind. I quickly got into a routine: have a little coffee on the way there, walk in and get a weight, find my chair, get a standing blood pressure, then settle into the chair and get my shoulder exposed so they could access my catheter, get snuggled in (most people feel cold during HD) with a warm hat and blanket. Once dialysis got going I worked (some online meetings with headphones, some computer work). About once a week the nutritionist, social worker, and doctor would come by. They would review my labs and determine if I needed to make adjustments (eat more protein, take phosphate binders, etc). I would eat a high protein snack during dialysis. Once my time was up, the tech would come by and disconnect me from the machine, take a standing blood pressure, and a final weight. Then I'd pack up. Once dialysis was done I made sure to drink my usual amount of morning coffee (dialysis removes caffeine from the blood) and eat a hearty meal. Then I would head in to work.

The dialysis chairs were close enough to talk to my neighbors. And, sometimes my kids would come in with me and chat during treatment. My mom has had a number of close friends from her dialysis unit. Sadly, due to how long she has lasted on HD, she has outlived most of them.

I hope this helps. It's a scary thing just because it's unknown. I cried on the drive in to my first treatment. Soon it will seem like your normal life. I'm so glad I did dialysis, I was down to GFR of 8 and I was feeling very bad (tired, no appetite, no interest in anything). Once I started dialysis I increased my work hours to 32 hours a week and was going for 4 mile hikes every weekend. It was great!

[Missingthesun in reply to Cabrilla]

Hi! Sorry for the late response. There are so many I want too reply to. Thank you for your feedback. I am sorry to hear about your mom. It sounds like she has been through so much and wow now you are going through dialysis also. If I may ask do something hereditary bring this on? I just got the graft placed last week and my arm feels many sensations and the incisions make no sense. I will be asking the surgeon what's up! I appreciate your experience on the dialysis center and being so honest as I have had several small crying spells like what the he'll am I doing and then to hear what you go thru for transplant and well forever I am like wow and the only alternative is not living. It's all a lot and my friends don't know how to respond or just look at me soooo yeah I hope I meet more support a long the way. Congratulations on the new kidney! Hope you are feeling amazing!

[annulla]

I underwent three surgeries trying to create a fistula, and all three failed. Finally, a fourth surgeon gave me a graft and it was successful. The graft wasn't particularly painful (certainly nowhere near the pain of kidney failure!), and these days (two years later) I'm barely aware of it.

[Missingthesun in reply to annulla]

Thank you for your feed back. I hope to feel the same but right now I am like what in the he'll lol. I got the graft done last week so I am feeling 100 different things.

[annulla]

BTW, before I got I new kidney I was on dialysis for about a year and hated every minute of it. For me it was painful and exhausting. So glad that my transplant freed me from it!

[nosillap]

Before I had my kidney transplant I was on hemodialysis & thought it was the way to go!! Did that at night while I slept. Did not interfere with life like in center dialysis did. Any chance you could do that dialysis?

[Missingthesun in reply to nosillap]

Hi! Do you feel like you really need someone at home to do the hemo at home? I would prefer that but I can't exactly rely on family. I am single also sooooo...