Abit about me&some questions as I’m new to this :)

[Gracejessicas]

Hi all,

So my dad has just been put onto dialysis after many years of surviving a semi normal life without any treatment just a lot of pills daily.

He was working before and after lockdown then he broke his arm so couldn’t work (as he works on a construction site) however this past month or two his health has rapidly deteriorated to the point where he can’t do a lot, I don’t know if that’s because of lockdown ie sitting around a lot or just because of the percentage of his kidney but his doctor advised him to go into dialysis, which he did, he is having his renal treatment as I am writing this which is nerve wracking.

So to be honest with you I am just coming on here to get some clarity off people who are going through the same thing as my dad and I are.

We have been offered to do the treatment at home and as it’s only my dad and I, I would have to care for him and do the treatment for him etc, I don’t mind because he’s my dad but I didn’t know what the best option was.

I also wondered what people felt like after they have there first treatments, I know everyone is different but do you start to feel better straight away or is it more of a gradual process etc.

Anything else or any other information on dialysis or ckd would be great as this is all pretty new and daunting.

Thank you, Grace.

[Hidden]

I made the decision to do home peritoneal dialysis after being diagnosed with End stage renal disease. I received training at the hospital and had a pd catheter surgically implanted. Baxter supplied all the supplies to do the dialysis at home. I was on pd was 6 months before I got a transplant. I was on the transplant list for 3 months before I got the call. The correct word for dialysis is renal replacement therapy because the treatment you choose is doing the work a healthy kidney should be doing. You will find that he will feel better after dialysis because it will clean the toxins from his blood and help reduce his potassium and phosphorus levels. Register with a transplant centre when you start dialysis, because there is a chance your dad could get a transplant which will mean no more dialysis. PD dialysis is easier on your cardiovascular system and your heart than hemo, you also have few water and diet restrictions, but choose what you prefer, Hemo removes more phosphorus and PD removes more potassium.

[Gracejessicas in reply to Hidden]

I think he is looking into home dialysis however I think he feels safer having treatment at the hospital because he has met his nurse now and she’s nice etc so I’m not sure what we will do.

& that’s good. How do you feel now you have had your operation, you had that quickly as well. My dad has been on the transplant list for a couple years with no luck however two of his kind friends offered to give them his, unfortunately one of them was tested and he has been diagnosed with Cystic fibrosis so I’m not sure if that will go ahead, the other one is trying to get tested to see however he has just found he has COVID and the hospital are taking a while with it all anyway.

I will have a look into the transplant centres though because that would all be fantastic.

Thank you for the information you gave me it’s all helping me understand more to help this easier for him and I.

He got home yesterday and he is alright to be fair, his arm is really sore from the needle which he said he didn’t like but I think he feels about the same as he did before he had the treatment however it’s only the first day so hopefully things will start getting abit better.

[Hidden in reply to Gracejessicas]

The main difference is that you have a lot more energy, but it does take a while to heal from the operation, but you can eat as normal and don’t have to worry about drain pain when doing PD, it’s when your draining fluid from your body etc.

[Darlenia]

Hi Grace! I'm so sorry to hear about your father. I'm also a caregiver to my husband. With my husband, he began to feel better shortly after going on hemodialysis. He had more energy, ate better, slept better, etc. For us, it took only two weeks or so to see the improvement. If he is on in-center hemodialysis, he likely can likely go there on his own in a month or so. (If you're driving, you can get a handicap hang tag from the center to make things even easier for him.) I'd like to stress that this is what happened in our situation, not everyone may have the same experience. After a few months on in-center hemodialysis, we transitioned to peritoneal dialysis.

As for the different forms of dialysis, much of it will depend if your dad wants to be considered for a transplant. If so, your transplant center may prefer patients go on peritoneal dialysis so check that out. Peritoneal dialysis can be done completely by the patient from beginning to end. One can do this either manually or use a machine. My husband does it all by himself, I don't help him at all. There is also home hemodialysis with which I'm not very familiar. I think it may require a care partner. I'm sure others will have information about that one. Both home hemodialysis and peritoneal dialysis will take some time to learn and require space in your home for supplies. Then, the last one is in-center dialysis which I suspect your dad is doing now. With that one, the nurses take care of everything. You mention your dad is in construction. When my husband was doing hemodialysis, there was a construction man who routinely did dialysis at that center from 3:00 p.m. to 7:00 p.m., three days a week. Yet, many in the workforce prefer to do dialysis at home. Please be mindful that not all centers offer all options. And your nephrologist may prefer one center over the other and will keep an office there to visit his/her patients. What I do know is that no matter where one is in this journey, it's important that the decision is made with thought and care. I'm glad you're taking the time to do so. I've placed a link below that explains the three forms of dialysis in a bit more detail. And please remember there will be ups and downs, but it straightens out as medications and procedures are introduced and adjusted. Sending you encouragement! davita.com/treatment-services

[Gracejessicas in reply to Darlenia]

Hi Darlenia. I’m sorry to hear about your husband also. That’s what I’m hoping happens with my dad because he feels about the same as he did before the treatment right now but he has only had one session so hopefully it will get better. I’m glad to hear your husband is going better.

He is doing hemodialysis with a nurse helping him do everything.

Thank you for that information on the peritoneal dialysis that’s really helpful, we will both look into that.

My dad is doing a twilight shift at the hospital therefore he goes from 5.30pm till whenever he is finished three times a week which works around my job and his.

Thank you for your help (I will have a look at that link also so I can gather some information on things) and some hope.

[KidneyCoach NKF Ambassador]

Hi Grace, firstly I thank you for taking time out of your day to care so much for your dad. He will begin to feel better but it will take a few months. He may be anemic (caused by kidney failure), low iron stores or low oxygen levels. It may take a bit for his body to adjust. This may be helpful in deciding what is best.

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

He may be able to do either PD, or home hemodialysis (HHD). Some clinics require a care partner for HHD, some don't. In the USA it is federally approved to do SOLO HHD with NxStage machine. Even with a care-PARTNER (not giver), it is essential the person on dialysis be trained to do everything on their own, with someone there only as a backup. However it is a personal choice, so you and your father can work out responsibilities. But in truth he will and should own and manage his own health and treatments, controlling all aspects if possible.

I highly encourage you both to check out the following;

Kidneyschool.org

NKF.org

AKF.org

AAKP.com

Home dialysis Central

freseniuskidneycare.com/kid...

I was on in center dialysis for 7 months then went to home hemodialysis. I felt so much better I went back to work so it is doable. If possible your dad should consider getting listed for a transplant as it is far easier on the body as a whole.

I'm in my 19th year on dialysis. If you have more questions please ask. I have lots of experience. I may have answers.

Blessings

[Gracejessicas in reply to KidneyCoach]

Hiya kidney coach.

Thank you and yes hopefully he will start to feel better, I understand we need to give it time. He isn’t anemic I don’t think he was just born with one kidney but didn’t find out until his late 20s and had already done some damage on his body. He has Hyperglycaemia (high blood sugar).

Thanks for the link I will take a look at that.

Oh I see that makes more sense. I think hhd would be a good option if he is going to be on dialysis for a long time (if he can’t get a transplant yet).

He does manage his health but sometimes he is unable to therefore I should also know, this is why I am learning so thanks for the advice.

Also thank you for all them websites I will definitely look at all of them.

That’s really encouraging, thank you. I’m glad you are feeling better as well.

I think he has been on the transplant list for around 2 years now and nothing so far.

Thank you for all your help. Grace.

[KristiS_NKF]

Hi Grace,

Everyone here has given you great advice and will be happy to keep answering your questions, as they have said - which I encourage you to do because they all have a wealth of information and experience!

I want to also suggest that you give our NKF Cares Information line a call - it's for patients, family members and care partners. You can speak with a trained specialist who will answer specific questions you might have and they can also provide you with educational materials as well - 855-653-2273.

Best,

Kristi

[Gracejessicas in reply to KristiS_NKF]

Thank you so much for that number. That’s really handy.

If I have any questions I will be sure to ask. Thank you c

[DorisL_NKF]

HI Grace,

I also did peritoneal dialysis which worked out great for me. The surgery itself to put in the catheter was a little rough although I think it was the anesthesia that made me nauseated when I woke up. I asked them for a different one when I got my transplant a year later, and I it worked out so much better - less pain and faster recovery.

The first month of dialysis took a little adjustment but some of my appetite and energy returned. I also stopped having episodes of "brain fog" where I would have trouble concentrating. I hear people often say they don't want to do dialysis but I wonder if what people really mean is that they don't want to get to the point where they have to do dialysis. Once I started dialysis, I felt better. After all, dialysis is doing some of the work that kidneys do : removing excess fluid and waste from your body. And like others say, PD is gentler than in center hemo because it works over many hours every day as opposed to 3-4 hours three times a week.

At the same time, I know many people who want to go to a center because they feel better know a health professional is handling their care. Also they like the company of other patients and staff.

As far as learning how to do PD, my center was very patient with me and took all the time I needed to learn how to do it. Many people have a caregiver help them but others are able to do it alone. I did the training in two days and I was able to handle all the PD myself at home. I was also able to leave the house and do PD on the road if I had to run errands. I just had to readjust my schedule so that every 3 hours or so, I'd set aside half hour to dialyze, either in my car or a quiet room somewhere. Once I started doing night time dialysis with the machine (automatic cycler), I didn't need to do it during the day. Of course, now with a COVID, it's a good idea to stay home.

You can also look into home hemo which I'm not familiar with. I hear it works great though you need someone to do it for you which in your case doesn't seem to be an issue with your dad because he's got you helping.

Hope that helps. Keep us posted on how it goes.