dialysis , Help !!

[Shaneshaanderson28]

hello , I'm 28 years old and was just put on dialysis , I'm scared Idont know to feel I'm depressed just all of the above I have lost so much weight I feel ugly I'm just all over the place .. I just need someone to talk to that's going through or has gone through this

[LilyAnnepuppy]

Welcome to the group. I’m sorry to hear about your situation. My husband was just put on dialysis but he’s much much older. I can relate to the anxiety and depression. The idea of a whole new lifestyle is overwhelming. But there are some good doctors and educators out there to help. Get tapped into a support network.

I’m sending positive energy your way.

[Kbressler NKF Peer Mentor NKF Ambassador in reply to LilyAnnepuppy]

Kidneysolutions.org is a facilitator of a kidney support group on Monday nights at 6:00 pm CDT. It meets via zoom and you can sign up by going to their website and providing your email address. All of Kudney Solutions programs are free no fees. Might work to your advantage so check it out.

[Darlenia]

I'm so very sorry to hear you're on dialysis at only age 28. It's definitely a lot to take in and work through. Maybe you're on dialysis for a short period of time for acute issues which may resolve. Or perhaps you're on dialysis with little, if any, hope that your native kidneys will improve. If it's the latter, I'd really like to encourage you to consider getting on the transplant list. A transplant can return you to a near normal style of living. It may seem that a transplant is impossible to achieve but they do happen for many. You see, my husband was put on dialysis at age 70 and received a transplant a year later after he accepted a kidney with conditions. So chat with your nephrologist, meet with your social worker at the dialysis center - see what needs to be done. Here's a great site for you to refer to in your discussions and research. I truly hope this is a path you can pursue. srtr.org/transplant-centers...

If getting on a transplant list isn't an option, please remember that research is proceeding too in the area of dialysis research - the research includes implantable dialysis devices. It's the 21st Century - there is movement on both the medical and technical fronts. In the area of personal wellbeing, there are also groups one can join. If you would like to talk directly to a group of men, I highly encourage you to join the FB group: Kidney Warriors: Men's Support. They meet weekly, I believe, via Zoom. The man running it is now on dialysis but he has also had a transplant. It's a group just for men like you - most all are on dialysis. Also, please consider involving yourself as a advocate for those with kidney disease when you see your way clear and if time permits. Volunteer with National Kidney Foundation and others. Your voice will be greatly appreciated. Please take heart and look to the future. Always remember that "where there's a will, there's a way". Sending lots of encouragement your way! We care about you; let us know how things go.

[Marvin8 in reply to Darlenia]

"Accepted a kidney with conditions." Would you be kind enough to elaborate? I've never heard of "conditions" before. ???

[Darlenia in reply to Marvin8]

Sure! Kidneys with conditions are those that come from donors with infections such as Hep C, HIV, Epstein-Barr and more. These kidneys are now often "cleaned up" to the extent possible and offered for transplant by some transplant centers. But other factors can also play a part - age of kidney and so on. My husband, a senior citizen, was offered a kidney from a 60 year old man who died from a massive stroke. But that offer was withdrawn when they discovered my hubby had a uti. He later was offered and received a kidney from a deceased 45 year old with fungal infections who passed away from a heart attack and wasn't discovered for a while. (My hubby was then put on fungal medications for a few weeks to make sure the fungal situation stayed away. Also, the kidney began working immediately so the harvesting delay didn't affect it.) We recognized that the really great kidneys from younger donors would likely go to younger candidates. So we were quick to agree to receiving one with conditions when the subject was brought up during consultations.

[Marvin8 in reply to Darlenia]

Omg, I'm such an idiot. I thought "with conditions" meant something like; "As long as you refrain from drinking, smoking, no nsaids, and promise to exercise, we'll give you a transplant."

[Darlenia in reply to Marvin8]

Lol. Wouldn't that be nice!

[Marvin8 in reply to Darlenia]

Seems pretty scary to me to think about the prospects of having to choose between dialysis or the "potential" to contract some of the disease mentioned above, but perhaps they can indeed scrub the new kidney to the point there's no risk. Talk about being trapped between a rock and a hard place. Then again, to somebody already on dialysis, they might consider some of the other diseases a blessing when compared to having to be on dialysis.

[Darlenia in reply to Marvin8]

It's interesting, actually, to see how some people react to transplant offers. I've run across a gentleman with nerves of steel (a pilot) who passed over 4 kidneys to get to the one that was perfect for him. Then, there's us. We said yes immediately. We know we're nearing the end of our lifespan so we were willing to do anything to get off dialysis - settling for a kidney that was less than perfect and likely won't last as long as others knowing we might be nearly gone anyway by then. (My hubby was 71 at the time of his transplant.) Some people do actually catch Hep C, cytomegalovirus , etc. from the transplant and then meds for those are added to all the others one takes. Generally, like in my hubby's case with the fungus problem, eventually those meds are withdrawn. Yet a few do get very ill. I know my hubby wound up with a horrible ureter leak from his new kidney (its ureter sprung a leak so urine flowed out my hubby's incision), then his heart reacted by going into a-fib and he also developed a foot drop - there was definitely a time when we both thought we'd made a horrible mistake. He had so many hospitalizations over that kidney. But by and large, transplants tend to work out just fine - just as it has with my hubby. He's back to normal - better than he was while on dialysis. We have since noticed that the busier centers are the ones that usually have the skilled doctors along with the technology to reclaim kidneys previously discarded, as well as the experience to bring patients around when transplants cause havoc. Sometimes transplants go very smoothly, at other times they're very bumpy. Looking back, we're glad we forged ahead. We just wish we had been a little less naïve and a bit more prepared for the issues thrown at us. If you can, try to hang on to your native kidneys as long as possible. There's nothing better than having your own organs working for you!

[NurseRed]

Hey im sorry to hear about you having to go thru this im 44 and i understand completely but opposite happened to me ive put on so much weight im hideous im also very depressed and tearful i just want my life back i have so much anxiety during my treatment i cant sit steal and feel im goin to burst out my skin my nurse has had to hold my arm still before so if you get any good advice it may help me hang in there !! God bless

[Bunkin]

Hi! I completely understand. I remember the day the doctor called and told me it was time. I had fought for 5 years to stay off it. I was scared, sad, depressed. But…. I told myself at least it’s not like other diseases where there’s nothing you can do, I can do this until I find a donor and it’s a blessing and a life change. It can feel overwhelming but try to take it one day at a time and be in the moment. Being a person that always tries to think of all scenarios, I had to work on that. If you can do that it will be way less stressful! You can do this and if you need a shoulder, just holler!!

[Shaneshaanderson28 in reply to Bunkin]

Thank you so much 😍

[Shaneshaanderson28 in reply to Bunkin]

Deff need a shoulder, this is so much .. I have 3 kids that need me .. I just hope I can get a transplant soon .. I go Thursday to talk to someone about PD but I heard the drains from PD are horrible do you know anything about that ?

[Darlenia in reply to Shaneshaanderson28]

I think you'll hear from Bunkin soon. In my hubby's experience, there was no drain pain - ever. Make sure you ask the PD nurse for the best surgeon for catheter placement if PD is your choice. Some are better than others. And then, in the rare chance you do experience drain pain, ask for changes in your protocols. Sometimes it involves the placement of your machine too. PD is, by the way, a good form of dialysis. Our transplant center recommended it - noting that accessing your blood vessels can lead to a higher chance for calcification of the important arteries needed for transplant. PD, of course, uses your peritoneum, not the vascular system. Also ask for the most updated cycler if you go the PD route. There are ones that are easier to use, like the Amia cycler, than than others.

[Shaneshaanderson28 in reply to Darlenia]

Okay , thank you .. you have been so helpful in this process.

[Bunkin in reply to Shaneshaanderson28]

Darlenia is absolutely right! Look into the surgeon, I didn’t. He placed my catheter but didn’t tack it down so it migrated. I kept having awful pain on my right side. Kept going back to surgeon who just gave me pain pills and ignored me. Finally my dialysis nurse, one day when it hurt so bad I was crying, sent me for a Ct. the catheter had migrated to my right side so I had to have surgery again. Plus when I had the surgery they didn’t make me pee before I left. Got home and couldn’t pee due to anesthesia. Ended up in emergency room. So make sure you do that before leaving the hospital. Then I decided to do manual because they told me I couldn’t do both and it was more flexible. But I did have pain filling and draining. I had to go to hospital for Covid and they used the machine. It didn’t hurt. It was fantastic so I decided when I got home I would get the machine. At first it seemed ok but sometimes it would hurt. I believe it was the machine I was using.

I’m not telling you all of this to scare you. I’m telling you so you’re informed because as much as I read none of this information was out there. I used Fresinius for my company because that’s who my nephrologist used so they had a particular machine. The hospital had a better machine. Always stand up for yourself. You know you better than they do. I was very small and they tried to give me too much solution. I kept telling them it’s too much. They kept telling me according to your size you can hold this much. I ended up in the hospital, they told me the excess dialysis fluid had gone to my lungs! When I got out I marched over to that office and told them how it was going to be! He didn’t like it and I didn’t care. Then he wanted to add an extra session in the middle of the day to do manually, I said no. I refused to be forever tied to my home and unable to go anywhere. I don’t regret it. I wish I would have had someone to tell me all of this. Instead they all acted like I was crazy and they’d never heard of it before.

Now, there are many people, probably the majority who never have any problems that I did. And that’s more than likely going to be you!! So just go in with a good outlook. If you have any questions and I can help, I’m glad to. Also start your transplant campaign NOW! I had a friend who had a photographer take pictures and she wrote a story about my life and put it on FB. I had several people offer but my sweet cousin offered first and we just felt it was meant to be. She was tested, she was a match. Our surgery was scheduled 3 different times! Finally in February 2021 it happened. So I was only on dialysis 9 months! If you need help with that I’m glad to show you mine!

YOUVE GOT THIS!! Praying for you

[Beachgirl32]

You are very young to start dialysis but there has to be a redo why your doctor put you in now . First thing is yes please get on the transplant list in your area . I know it very scary I will be there soon myself . I tell myself it is a blessing we have dialysis my grandmother had the same kidney disease I have but dialysis was not around in her time she passed in her 50 s so I look at it at least I have that option I’m already a decade older then she was if there was dialysis for her she could of been around a lot longer I was very young when she passed so I didn’t get to know her well. Are you doing hemo or pd dialysis. Whichever one I’m sure people here who are doing hemo can help you through it or the one with pd can help . As suggest a support group is great . Also talk to your dialysis nurse ask any questions no question is a stupid question .

[RoxanneKidney]

Stay active and try to keep as close to your normal routine as possible. This will help with depression. So will ftesh air. Learn all you can about your illness and be your best advocate. No one knows you better than yourself. When my mom was dying of stomach cancer she often counseled others who were newly diagnosed and struggling. Her cancer should have killed her in three months but she survived over 3 years and it had already spread. You are young and have a lot of life ahead. No shame in taking time to feel sorry for yourself, but set a date for when you are going to wake up and take the bull by the horns.

[Aloha49]

Boy, do I know how you feel. The doctors ask how I am doing and I get so tired of saying I am anxious and feeling down cause what if they put me on the inactive wait list for a kidney due to these issues. With advanced kidney disease, these are natural feelings. I see a therapist which helps and I have a strong spiritual community plus I meditate most days. These things help me get thru the difficult days. Also getting out in nature really helps. I hope you get some help and can talk confidentially with friends or a therapist as being real with someone really helps. Take care, BB

[Shaneshaanderson28 in reply to Aloha49]

Thank you so much 🥰

[Wifey122]

Hello, I’m sorry your going though this, my husband has been on Dialysis since December. He’s 32. It definitely can be a lot and very overwhelming, he had good days and bad days. Just expect them, however you must stay focus on getting better.

[Turtlepad513]

Having to deal with all this in your 20’s or 30’s is not easy. Especially when you can feel like no one else your age is going through all this. I was diagnosed at 21. Thankfully I am 34 and still not on dialysis yet, but one of my worries is the next doc appt could change all that.

I’m stage 4 and on transplant list, that said, my 2 recommendations is, National Kidney Foundation has NKF Peers to talk to someone who is a trained mentor, or like another has mentioned, you could try therapy.

NKF has