Had surgery, getting ready to train for PD Dialysis.

[DAF1234]

I had surgery on March 20. As everyone posted, not bad at all. Minor discomfort but no actual pain. Must make sure to mention this to my Dr. thanks for the unnecessary stress. Dr had told me “of course it would be painful.” I met with the nurses at the center and what wonderful people. Wish me luck. My new concern now is weight gain. I’m told with PD the sugar solution put on major weight. Has anyone experience this?

[Jayhawker]

So glad to hear how well the surgery went for you! This is definitely encouraging news. I'm still waiting out the decision regarding dialysis for myself. I don't see my new nephrologist until May 30th so I'm just in a holding pattern right now. I have another renal panel run next Friday. My last renal panel showed creatinine at 3.07 and eGFR of 15 so that would indicated it's still a little too early for dialysis I think.

I have definitely been told that most gain weight on PD. I've already got weight issues so I'm hoping I'll be able to manage that effectively when the time does come for me to start PD.

Let us know how this goes as you get used to all of this

Marj

[DAF1234 in reply to Jayhawker]

Hi Jayhawker

I agree with you. Egfr of 15 and creatinine of 3.07 is still soon. Although most Drs say it goes according to how you feel. I stayed in stage five for almost a year. Good luck. I will post how this goes on Tuesday.

[Jayhawker in reply to DAF1234]

I've been in stage 5 since January of 2017. My nephrologist achieved a modest improvement in my creatinine and eGFR so my data has actually improved from an eGFR of around 9 to an eGFR of 15 and occasionally 16. So it's pretty difficult to know when I'll actually reach dialysis point. I'm feeling pretty good most days right now. When my eGFR was around 9 that was not the case. And I've still got no real problems with fluid retention as long as I watch my sodium intake. I'm not taking diuretic or blood pressure medication yet. In fact, I am only on medication for anemia and a low potassium diet with some supplemental medication support for my potassium as well.

So, I'm hanging in there alright for the time being. I think in some ways the worst part of CKD is the mental battle . . . This continual balancing act with food and fluid intake and so forth; not knowing when my kidneys will experience another sudden plummet in functioning, etc. I'm definitely learning to live in the moment day by day

Anyway, so good to hear that the surgery was fairly simple and straightforward. This is the sort of information my nephrologist really can't give me. So I am most appreciative for anything that people will share through this forum. Plus, being the last person left alive in my family I find the support through this forum to be most helpful as well

Marj

[DAF1234 in reply to Jayhawker]

Stage 5 for two years!!!! This Is amazing. Good luck to you and keep doing what your doing. It is definitely working. I will try and post as often as I can. I believe it is always good to here from people who have and are going through this. Thank you for your post.

[Carillon in reply to Jayhawker]

For HD thru a fistula, does anyone have this experience? Has anyone used “buttonhole” instead of needles?

[cs65 NKF Ambassador in reply to Carillon]

I hate to tell you, but they still use 2 needles for a buttonhole method. What it is is using the same two holes for the needles and scraping off the scar each time with a sharp. That's why I decided against it and use the normal method of alternating sites on my fistula.

[Carillon in reply to cs65]

Thank you. I had heard that it is easier. But i guess that word 'easy' isnt in dialysis.

[ILMA54]

I just went for dialysis orientation on Tuesday. They said for PD, the strongest dextrose solution gives about 400-500 of calories per day. Without moderating the rest if the caloric intake is about 1/pound per week. They said with proper dietary management, you can minimize right gain

[DAF1234 in reply to ILMA54]

Thank you, very good information.

[horsie63 in reply to ILMA54]

Is that for a normal size person? I'm small at 92 lbs and my neph thinks I won't need to many exchanges when the time comes.

[Bunkin]

Good to hear that it’s not as bad as you thought it would be. That’s very reassuring to me. Prayers for you as you start your journey😀

[DAF1234 in reply to Bunkin]

Thank you and same to you.

[Hidden]

I find this information interesting....and am wondering if Dr. told DAF1234 about weight gain before procedure or did he/she find out after from nurses? I haven't had this procedure yet but have not been informed on a lot of things I have seen posted which makes me worry and wonder "why" doctors do not inform patients about what they may experience after procedure and once on PD. Thank you for sharing.

[Bunkin in reply to Hidden]

I agree, mine hasn’t told me any of that. It’s like pulling teeth trying to get information from him. Thought it was just me, as I don’t blindly follow along without questioning everything

[Hidden in reply to Bunkin]

Thank you. That's the way I feel. I am very concerned about for my future post PD surgery and going through the process. Some days I feel that I dont think I can do any of this. I've tried to ask questions but am not getting the information that satisfy my mind.

This site has helped. Also, family-wise I am not getting any real support... just a few words here and there...and that is it. I dont think the little family that I have left really see the seriousness of having late stage CKD.

Anyway, thank you for sharing.

[Bunkin in reply to Hidden]

I agree. I don’t get any support from my family. Only my husband and his sister. It’s like no one has a clue how bad this is.

[MPK0706 in reply to Bunkin]

Bunkin, I found that sharing your story with everyone helps all those around you better understand what dialysis is all about. Once they understand you would be surprised how supportive they become; even if passively! Best wishes!!!

[Bunkin in reply to MPK0706]

Unfortunately for me, I decided to share my story of Facebook at the urging of my doctor, even posted in our family group. Wish I had never done it. The lack of compassion really hurt my feelings. Glad it worked for you though 😀

[MPK0706 in reply to Bunkin]

Actually, I would never post on Facebook. I share with those in my circle; friends, family. You are right about the fact that compassion is not high on everyones list. Many people cannot understand the seriousness of ESRD! I just try to be happy and take every day the Lord has given me! (Love chatting with you! Mike)

[horsie63 in reply to Hidden]

I think most docs don't tell patients about how they might experience PD and even HD because each person might experience the same thing in a different way. Some people have high tolerances for pain, others do not. I have a very fast metabolism but my brother is the opposite. I have kidney disease, he does not.

[Gotthecall_123 in reply to Bunkin]

Hi Bunkin i found my neurologist was the same so i decieded to advocate for myself and started to educate my self one day at clinic hes said you ask alot of questions like he was annoyed 😑 and j said if i dont ask you certainly arnt goona tell me😁then he said i hope you get a transplant soon 😑lol💪🙏😝

[Bunkin in reply to Gotthecall_123]

I hope you changed doctors😂😂

[Gotthecall_123 in reply to Bunkin]

Yes i did he was my doctor when i was on dialyses as soon as i was going for transplant i got a transplant specialist this guy is great💪🙏😝

[Jayhawker in reply to Hidden]

I couldn't agree more! For me, the more I know and understand, the calmer I am regarding all of this. It gives me time to adjust, mentally, to upcoming treatment options. I am often able to take action early that will smooth the way so I'm ready for the treatment when it needs to begin. For instance, with the expectation that I'll be starting dialysis at some point during this next year, I made the following modifications with my job this year:

1. I stepped down from the administrative role I was fulfilling. That has given me an additional 20 hours a week every week. I'll need that time for dialysis.

2. I also applied for and received a sabbatical for next year. (I'm a university faculty member.) So, I'll teach fall semester 2019 and then will be on sabbatical working on an autism curriculum I'm trying to get published, next spring semester.This will also give me the time I need to make this transition,

Without advance awareness of this transition to dialysis I would still be serving as an administrator and would not be on sabbatical next spring semester. Clearly, both would make this transition to dialysis much more challenging.

Of course, I know I'm incredibly fortunate to have these options. with work Many would not have similar options with their jobs. However, I'm sure all would have various options they could set into place with sufficient understanding of what they will likely experience as they begin dialysis.

If we're to do the best job possible dealing with all of this, we MUST be giving total and accurate information.

I think most of us have the courage needed to handle this information. I find myself often praying that God will provide doctors who will have the courage to tell me what is happening with my body, what treatment options exist with specific detail so I fully understand these options, and the wisdom to guide me (i.e., rather than dictating to me) as they allow me to make my own treatment decisions. Doctors like this are truly hard to find; but they do exist.

Marj

[Hidden in reply to Jayhawker]

Thank you for sharing. I appreciate knowing as much as possible. I agree ..the more I know makes me feel calmer.

[Carillon]

This is a very interesting thread. My GFR is 16 and my doc wants me to get a fistula. I saw some photos of fisulas gone bad and they are very Frankenstein-like. I have looked online at all the various dialysis’ and frankly they all stink. You’d think with so much money in research that something less intrusive would have been available in the 21st century. I have a loving partner who is very encouraging but I don’t want my home to be a hospital room with dializer, boxes, rigid schedules, bags etc. I know someone who said he too felt that way so he goes 3x a week to a clinic. He goes at 6am and by noon he’s out, takes a quick snooze and gets on with his day. Plus they check all his vitals and correct infections etc. His social life including dinners out and functions aren’t disrupted and his home remains in tact. He travels everywhere as he can prearrange clinics . But I’ve read that this form of dialysis is harder on the body. So I’m totally confused as I hear so many opinions even from medical people. I just don’t like the idea of a 7 day a week every night and some day times. Has anyone seen any research comparing the different methods and has anyone discovered a short cut. Apologies for the length of this note.

[Jayhawker in reply to Carillon]

I know what you mean. I'm shocked so little advancement has occurred in this area of medicine since my father was on in home hemodialysis 38 years ago! This area of medical research seems to have been nearly totally stagnant over the past 4 decades with few advancements.

As far as the dialysis treatment options go, I do so strongly believe that this has to be an individual decision for each of us. I'm deeply committed to trying PD in my home as my starting dialysis option. If I find that it either doesn't work for me or I tire of the daily routine, I can always switch to in center HD dialysis.

What I do know and understand is that any dialysis option that cleanses your blood daily rather then just 3 times a week is much easier on your cardiovascular system. That should lead to longer life providing you don't have other significant medical conditions that would shorten your life. My first nephrologist was very clear about this issue. He actually shared lots of data with me as well as various research articles. (I'm a numbers geek and a major researcher in my area of special education so get this data stuff

Anyway, if for no other reason than to have a treatment option that is easier on my cardiovascular system and preserves my remaining renal function longer, I'm committed to trying PD first.

Also, my mother and I were the care providers for my father when he was placed on in home hemodialysis 38 years ago. He did not experience either any infections or hospitalization related to his home hemodialysis. So I do think this is doable.

That being said, not everyone will either want to do this in their homes or be able to do this in their homes. I really couldn't make my mind up which way I wanted to go for close to 2 years while under my former nephrologist's care. (I'm so deeply thankful for all the time and effort that nephrologist spent with me!)

I think this forum is great because you get to hear so many different perspectives on all of this as well as how everyone has coped with it. I find that to be both encouraging and helpful. Hopefully you will as well.

However, the most important thing is to keep reading and researching until you reach a decision with which you are comfortable. This is a major decision that will be a major change in all our lives!

Sincerely,

Marj

[Carillon in reply to Jayhawker]

Thanks. Have you seen

homedialysis.org/news-and-r...

Not much money is being pumped into these ideas and it seems to me that the dialysis industry likes things they way they are.

[Jayhawker in reply to Carillon]

Yes, that is exactly what I'm thinking as well. It's really rather disgusting.

Marj

[Unityismine in reply to Jayhawker]

Thank you for all the information. I have been on hemo dialysis in the center for 3 months and will soon be on peritoneal at home. I didnt know the benefits of PD to the vascular system and that it is better for a longer life. Thank you

[Jayhawker in reply to Unityismine]

Another interesting thing I've uncovered as I've researched all of the renal failure treatment options is a study publishing survey results from practicing nephrologists in the USA. I'm short, by far the majority of practicing nephrologists who completed the surgery would choose PD dialysis for themselves should they need treatment. Why? The cardiovascular benefits, the benefits of dialysinzung daily verses three times a week for your body in general, the short recovery time following each dialysis session, overall better quality of life, and they expected they would be able to keep working.

In addition to these benefits I like the idea of providing my dialysis treatments for myself independently. I also like being able to fialyze st night do my days are primarily free from treatment. And, I plan to keep working full time while on dialysis.

[MPK0706 in reply to Carillon]

My wife and I researched PD vs. HD. Some of the reasons we went with HD was the constant medical monitoring while in dialysis on M-W-F. BP checks, vaccinations, dietitians and in-center support make the “life-changing” event more manageable! We also know that if HD does not work out we would be able to change to PD! Best wishes!

[Hardstar]

I was PD for a year. I never gained any weight. It’s all about balance.

[Jayhawker]

Did you make any diet modifications? I've also learned that there is a fluid they can use that does not elevate glucose levels. So, were you on the regular fluid or the alternate that doesn't elevate glucose levels?

Thanks,

Marj

[Yat83]

Good to hear your recovery went well. And yes you do gain weight being on PD. Just have to watch the amount you eat and how often you eat. I was on PD for almost 4years it really well for me but I did gain weight and the infections kept coming but I know you will do well. Just follow EVERYTHING the drs and nurses say.

[cjkaltenbach]

Did you go through the DaVita PD training? If so, could you give details? Husband just had a major drop to 10, and we have to decide soon! Also, is it still possible to sleep on your stomach? Thanks... And good luck to you!

[DAF1234 in reply to cjkaltenbach]

I am still training. Not with DaVita my Dr’s use a company called Fresenius Medical Care. I met at the center and have two nurse’s assigned to me. My nurses are very nice and professional. Main thing to remember is the hygiene. Washing hands putting mask in first. Wiping down the area cleaning the port site. Everything else especially running the machine is very straight forward and simple to understand. I’m being told once you have the hang of it, it becomes very routine. Good luck to you and your husband.

[Jayhawker in reply to DAF1234]

So have you actually started using the cycler over night yet? Aside from the sanitation protocol, which is clearly critical, my two other potential issues have to do with how easy it is to sleep at night with the cycler running as well as how often, if at all, you experience warning alarms throughout the night.

I'm honestly surprised that I'm stressing about these issues. My mom and I were care partners for my dad while he was receiving in home hemodialysis; and he didn't have a fistula. Instead we were working with a graph which is definitely trickier. But he never had an infection nor was he hospitalized during the nearly 3 years he was on in home hemodialysis. So I really should be able to do PD dialysis for myself by myself in my home. (I live alone

Nevertheless, I'm stressing out some about all of this. I'm finding your posts to be very encouraging!!

Marj

[DAF1234 in reply to Jayhawker]

Hi Marj

I’m actually doing a treatment with my nurse as I type this. We are in my home I am following all steps and my nurse is only observing. I am jotting notes as we go along to remember small things. I have not performed an overnight yet. Tomorrow night (Thursday) I will be on my own, doing an overnight. The machine I’m using is step by step and if a step is missed it will inform you. Alarm is also set to your desired volume. It can be a soft reminder or loud if your a sound sleeper. I have mine set to 4. Everything is going well so far. 🤞

[Jayhawker in reply to DAF1234]

Very well don!! It sounds like this is going very well I'm so happy for you!

Marj

[DAF1234 in reply to Jayhawker]

I completed my first night with the PD machine on my own. Nurse came by my house earlier in the day and observed the set up. We set up everything except the final hook up. Just before going to bed I hooked myself up, using sterilization technique. At first it was difficult to sleep. My machine was making constant noises (motor, fill sound, etc). I ended up taking a sleeping pill and was out for the night. When I woke up I disconnected from myself, took vitals entered data and was on my way. Not very difficult at all. Good luck to you.

[Jayhawker in reply to DAF1234]

Incredible!! I'm so pleased for you🐶

And, thank you so much for sharing all of this; it really helps calm my nerves about all of this.

Marj

[Unityismine in reply to cjkaltenbach]

I was told by my nephrologist that Yes, you may sleep on your stomach, and turn over during the night while on peritoneal dialysis. That was a relief for me to hear.

[cjkaltenbach]

Thanks for the response! Hope to hear how it goes for you...

[Gotthecall_123]

Hi well good luck i was onPD for 3 years then went on hemo for 4 years finally got my transplant on may 24 th /2018 so my 1 year anniversary is almost here 🙏 stay strong💪Get tough 💪and make sure you wash and sanitize every thing you in contact with 😝. If you have any questions id be happ to try and answer them💪🙏😝