First 6 months on pd dialysis

[Ricmed]

I just hit my first 6 months on pd dialysis.

I am still working as a car salesman long hrs on my feet. I'm not sure how much longer I can do this I'm exhausted all the time. I can't sleep the cycler wakes me up every time I drain and fill. I have been working 10-12 hr days with only 4-5 hrs sleep. I think depression is setting in and I am llosimg hope. Quality of life is just not there I don't know if I should stop working. I'm 56 diabetic

They say it's a 5 yr wait for transplant I'm not sure if I'll be healthy enough in 5 yrs to get a transplant. I don't know what to do

[Hidden]

Hi,

I'm 66 and diabetic, hypertensive and Stage 3 CKD. Welcome to the club. First things first. You have many here in the same situation as you and many are here worse off than you and many here are better off than you. Basically, you aren't alone. My diabetes is finally "under control" with diet and exercise. After 17 years. A few months ago I took my last pill and I watch what I eat. I have to. It's the only food I get to see. I was also able to drop 2 more pills for hypertension and most days I am about 125/65 and on the day I'm not It's about 135/70. Still not too bad. It wasn't easy getting here and it is a daily struggle.

Don't give up on yourself. Selling cars isn't easy and if you are a career salesman then you have had both good and bad days. Same with the trinity of CKD, Diabetes, and Hypertension.

I've been looking into both PD and HD and as of now haven't decided which way to go. Have you spoken to your physician about something to help you sleep so that you don't wake up so often? I know you have to be careful because some sleep aids have an adverse effect on blood pressure.

I'd be depressed too if I had to sell cars all day. But then, I'd have difficulty selling ice water to someone in Hell. I absolutely believe that most of the issues we deal with can be handled. I have proof. Before I retired I was a Special Education Teacher. My students were middle and high school with every special needs imaginable. I'll take a class full of severely emotionally disturbed students every day of the week. You couldn't pay me enough to walk around a sales floor/lot to try to sell a car. My blood pressure is rising just thinking about it. I'm going to have nightmares tonight for sure.

Let us know how your PD is going and why you selected it. I'm looking at it but I have some concerns. Thanks

[Scotsfolk]

Sorry to hear your struggling . My Hubby went part time when he first started PD , he was very tired , often falling asleep within minutes of arriving home

[jennieck]

Hello Ricmed

I am very surprised that you are able to work full time - do your work know about your condition? If you are a permanent employee they are OBLIGED BY LAW to make reasonable adjustments to help you do your job.

My husband falls asleep with a cup of tea in his hand - but he is 70 so is retired. We found the first 6 months of PD a nightmare. The overnight machine alarmed up to 26 times a night. We are now on CAPD (3 exchanges a day) and this is working much better.

Please get some advice about your workplace responsibilities...try Citizens Advice or mention it to your doctor and get help via a social worker.

All the very best

Jennie CK

[lincoln53 in reply to jennieck]

Hi, I would like to second what Jennie CK has said. I did PD from 2005 to 2009, when I finally got a transplant. I worked 30 hours a week during those years, but I had a 2-hour commute both ways, so it felt like a 40-hour week. My employers were very understanding about my situation. While I used a cycler every night for 9 hours, I still wasn't getting enough dialysis, so I had to do a manual exchange during the day. My employers provided an I.V. stand so I could do an exchange in my office in the middle of the day. I know not all employers are going to be so understanding. But, as Jennie CK said, the Americans with Disabilities Act (ADA) requires that employers make reasonable accommodations for people with disabilities. There are people who can advocate for you.

[Ricmed]

Thanks for replying Yes my work is aware of my condition they just don't talk about it. First I was very surprised they didn't just fire me I miss work. Sometime I have to do a manual exchange during the day so I have to go home exchange go back to work. It's just getting harder to work to stay focused I get so tired. I was one of the top salesman now I'm more closer to middle. Very humbling

I am hoping for a transplant but my age and the diabetes I'm not sure if I'll get one. Even that is risky. I don't know what to do. I want to just go on disability but I'm afraid of being homeless or useless.

But when I look at the quality of my life it's just not there anymore I'm working to keep my insurance now I'm hardly make my mimum wage I just work a lot of hrs. All I do is work till exhaustion go home hook up to cycler I've got no time it energy for anything else. This is a lonely place to be

[Chrissmart in reply to Ricmed]

You mentioned you were on a cycler so I do not understand why you have to do any day time exchanges. You could do your exchangesat work.

I am 75 and my kidneys failed 5 years ago. We knew it was coming but the final stage happened unexpectedly. I should have gone onto PD but I had to do a couple of months on HD during which they put my catheter in and I went onto PD. I quickly went on to overnight PD but the glucose played havoc with my blood sugar levels . I am Type 2 diabetic and I was forced to take on Insulin injections. Unforunately PD did not suit me, I kept retaining fluid and putting on weight. I became concerned that I could be putting myself at risk of heart related problems . So after a year I asked to go backmon to HD. My consultant agreed. Just over a year later I progressed to Home HD, and shortly after Nocturnal HHD. Fo me the ideal solution, leavjiong me free during the day. I am back on IN-Unit dialysis at the moment waiting for my fistula to be moved and reworked as a graft.

Talk to your mrdical team about your lack of sleep. Is your cycler from Baxters ? You should not be having so many alarms. My problem with the cycler was that you had to go 10 hours for the full trearment and I found myself having to lie awake for three hours waiting for the therapy to finish.

Please dont forget the nurses and docters are there to help you - you are on a life support system and your quality of life is an important factor.

Best wishes and good luck

Chris

[lincoln53 in reply to Ricmed]

Hi Ricmed,

Very sorry to hear about your woes. Have you considered applying for disability benefits through Social Security? You can find information here: ssa.gov/planners/disability...

The application process is a hassle. I've always heard people say that you have to apply two or three times before you get approved, but I was able to get approved on the first try. I think the trick was that I did a good job of documenting all of my medical problems. I know there are lawyers available who can help. The social worker at your dialysis clinic might also be able to help.

I hope things start looking up for you.

[jennieck in reply to Ricmed]

Hi again Ricmed

As Lincoln 53 says, you could do with checking what you are entitled to as an employee at your place of work. Employment law in the UK and in the USA is there to protect you in situations like this one. But it also sounds as if you feel very much on your own - your hospital should also be able to signpost you to extra help and assistance, plus a counsellor. You are not on your own, but I appreciate that it feels as if you are. It also sounds (as Chrissmart says below) that you might need a review of your treatment plan as it is not working as well as it should. All the very best to you.....Jennie CK

[Alisha79]

Hi,sorry to hear ur what ur going through. Sometimes u have to take a break from working and look after urself. Ur health is important. I wanted to ask,my father started PD dialysis 2 days ago and he is independent but since dialysis,he's been very drowsy and we can't get any word from him. Were u like this when u started? Pls help I'm very worried abt my father. Doctors are saying he's catching up on sleep but he's also hallucinationing. It's not like him.

Thank u