Hello all. My husband just started PD last week. We are using a cycler at night. He works a part time job. Things have been going so-so with the dialysis as he wasn’t draining well. The 3rd night at home his cath became blocked with either fibrin or a mucous plug. We called the dialysis nurse and he said it was ok and to just watch the drain. We got that problem resolved. Let me tell you a little about us. We are 35 years old with 3 kids ages 17, 14, and 11. My Mom also lives with us. My husband was diagnosed last year with focal segmental glomerulosclerosis which caused his kidneys to fail. His right kidney is gone and the left one is not functioning to capacity, hence the dialysis. We chose PD at home because of the convienence. But now, just 7 days into the PD my husband is starting to feel down and trapped. I try to be positive and encouraging but I am having problems dealing with my own feelings. I know that we will adjust with this new lifestyle but it just seems the road to that is so long. We are a team and do the dialysis together as a team. I just hope that I can provide enough encouragement to my husband to ease his depression so we can get on with our lives. I would really like to hear from people who have been through this so that I don’t feel so alone. I would like to talk to people who have done PD and also their loved ones.
Hi Aimee, and welcome to Home Dialysis Central. 35 is awfully young to get kidney failure, and it sounds as if your family has a lot on your plate. It’s VERY normal to be depressed at first, getting used to an unwanted lifestyle change. How long is your husband’s treatment? I know that some folks will connect, fill, and then disconnect and go about their business until it’s time for the next drain & fill cycle. That can buy some extra time out of bed to do usual family things. An extra-long tubing set can also create some more freedom.
I’m not a kidney patient, but wanted to point you to another one of our resources that might be helpful to you and your husband right now. Kidney School (http://www.kidneyschool.org) is a free kidney learning center in 16 modules. When you go through a module online, it takes about half an hour and it’s tailored and interactive–at the end, it will create a Personal Action Plan just for you. Or, you can download the modules as pdfs and just read them. You might find that the Coping module has information that might be relevant for you.
He only has to do 8 exchanges at night. He gets on the machine around 8pm and finished up about 530am. I believe his depression is causing him not to want to do things. He was invited to go to a football game next friday and I have been heavily encouraging him to go and he said he would rather watch it at home because by the time he got back from the game it would be too late to hook up. I told him that he needs to go and that the next day is Saturday. So hopefully he will go. Thanks for replying
Hi Aimee,
That’s exactly what I was wondering–how early does he have to get on the machine. If he’s on at 8 and off at 5:30, there’s probably no reason that on a Friday night, if he doesn’t have to work on Saturday, that he couldn’t get on at 10 or 11 and off at 7:30 or 8:30, right?
The key is to dialyze to LIVE, not live to dialyze. If your husband forgoes things he’d like to do (like go to the game) because he has to dialyze, he’s got it backward. The point is that dialysis keeps him alive (and hopefully feeling well) so he can do the things he enjoys, work, etc.
Hi Aimee. I’m sorry to hear that your husband is struggling with depression; I know what he is going through. I am 25, (married 6 months) and have been on peritoneal dialysis for 10 years. I have some suggestions as I have been using a cycler for a decade now, lol! First of all, you must learn to schedule your dialysis around your LIFE! That is absolutely necessary! You can’t possibly go your whole life connecting at 8 at night. Especially not on the weekends, I mean give yourself a break! Think about it, if he gets on the machine at 11 on the weekends, he’ll get off at 8 in the morning (if he’s an early-riser type guy, unlike me, lol! ) And if he sleeps til like 10 on the weekends, he can stay off in the evening even later! Secondly, I don’t connect to the machine without 2, count 'em, TWO patient extension lines! This means that I have 24 feet from the 2 extension lines, plus the regular amount from the patient line. Which means (I am on the second floor) I can go downstairs and raid the fridge, go to the bathroom which is way down the hall, go watch tv downstairs, all while on the machine! This is of course during the dwell cycle with patient line clamped. You know, one of the best medicines for something like this is for him to meet someone who is worse off. Like a previously succesful working woman who is now a cancer patient. I heard that from a psychologist, lol. He needs to take a look at the bigger picture here. If any other organ of his had failed, he would be dead. I’m not saying that mourning is not appropriate. By all means, mourning is necessary and natural, and I hope he has allowed himself this. But if he has been depressed for longer than seems necessary, and you try my suggestions, and it does not help, I recommend seeing a psychiatrist. There are so many medicines that can help clinical depression, if that is truly what he has. I hope this information is helpful to you!
If you or your husband hasn’t talked with the dialysis social worker and doctor about how he’s feeling, I’d suggest that you do this. Home patients should have access to a social worker by phone or in-person. The social worker should be available at most clinic visits. In calls and meetings, the social worker should assess your husband’s interests, goals, prior health history, support system, coping strategies, and help overcome barriers that he may have (or think he has) to living a full life with dialysis.
Families also have access to the social worker to help them deal with the patient’s kidney failure. It helps the social worker to know and address issues with the patient if the family alerts the social worker of issues that patient doesn’t share with the social worker. In my experience, men may be less verbal about their feelings. Families can be a great resource to the social worker in helping the patient.
It’s important for patients to feel that they have good quality of life. This requires that the dialysis team help patients choose the treatment that fits best with their lifestyle, feel well enough to enjoy as many of the activities they enjoyed before as possible, understand that they can still travel, visit with friends and family, eat out, work, etc. Ask the clinic if they have a patient to talk with about coping with kidney disease and CCPD. This can be invaluable. He and you should talk with the home training nurse about what things he wants/needs to do. Neddie gave you some great suggestions that should help him feel less tied down. Finally, as Dori said, it’s important for him to look at dialysis as a means to survive without focusing his entire life around it.
HI Aimee,
I’ve been on PD for the past 2 yrs. I was 42 in 2005 when I became ill with a vasculitis which is inflammation of the small blood vessels. It came on quite quickly (over a month) & I ended up in ICU with acute renal failure & pulmonary haemmoraging (bleeding in the lungs). I was a very sick girl who almost didn’t make it! I was started on haemo dialysis immediately & stayed in hospital for 5wks. I remained on 3 x wkly/in hospital haemo for 7 mths of that year. I hated haemo & it really wasn’t a suitable treatment. The 3 x wk treatments were too severe & harsh & I needed a whole day to recover after these treatments. The only day I felt a little improved was the 7th day & then back to the 3 x wk treatments. I was severely depressed for the whole time I was doing haemo / in centre & spent a lot of time talking to the social worker at the hospital & eventually saw a psychologist who prescribed anti-depressants. It was the worst time of my life. My Husband & 2 young boys (now 12 & 8 yrs) were also severely affected during this dark time in our lives. I could see “no light at the end of the dark tunnel”. Then I started PD at home in Dec 2005.
This treatment would be gentler on the body as a whole & I could be independent of the hospital & not tied down to a machine for hours on end. I started feeling a whole lot better once on PD & I was doing 4 daily bag exchanges every day. The exchanges only took 1/2 hr each time & I was able to return to part-time office work & organised my PD exchanges around my work hours. My whole outlook changed almost immediately & my overall health improved too on PD. I didn’t choose home haemo / nocturnal dialysis as I wasn’t prepared to be tied down to a machine all night & still wanted to be able to get up to my children through the night if they needed me. I also have insulin dependent diabetes-Type 1- & was worried about nightime hypos & being able to get up to check my blood sugars & treat the lows.
I know exactly how “down” your Husband must be feeling & I empathise with your concerns as his partner too. Can you access a renal social worker through your renal unit? You both need the support of a person such as this. Also your Husband may need some medication to help him get through his grief & worries. I know first hand that young men (& your Husband is a young man) don’t cope well with this sort of diagnosis. I have a cousin in his 20’s with renal failure & he rebelled as hard & as often as he could until his Sister donated one of her kidneys to him. He has been off dialysis now for 18mths & he & his wife are expecting their 2nd child.
Unfortunately, this bloody awful disease doesn’t come with many althernative treatments / therapies & the ones that are available are fairly archaic & intrusive. Your Husband’s life & those of his family will go on & with time you will no doubt settle into a “new” routine. Adjustment is the key & this adjustment will take some fine tuning & a little sacrifice. Once I accepted my illness & subsequent treatment, life got a whole lot easier for me & my family.
Does your Husband have the prospect of a transplant to look forward to?
Please know I have you & your family in my thoughts & prayers. If you would like to talk further about anything please feel free to PM me or alternately, I will keep an eye on the forum for any more posts from you. Take care. Cheers Aussie Angie.
I just read your message about your husband being on PD. I think he is depressed because this is new to him. Believe me, PD is much better than Hemo. I was on PD for 3 years and just changed to hemo and I hate it. Tell him to make sure he does EXACTLY what he is suppose to do or they will take him off and make him go to hemo and that will depress him even more. I am the same age as you all are so trust me I understand.
Nicole, have you thought about learning how to do hemo at home? I wonder how much of hemo is hating having others being in control of your treatment (and your schedule), plus the ups-and-downs of in-center treatment after being used to doing PD on your own…
We started PD last week. We are starting in the afternoon and doing 3 exchanges during the night. We sure want to cut this afternoon filling out after the first month and just do the 3 at night. That will give both of us more freedom. He is 63 and I am 61. He still want to get out and work with our sons. We have family business.
Have you talked with your doctor and home training nurse to let them know how important it is for your husband to get back to work and run his business. Hopefully they know already that he is still working, but sometimes people don’t think about that when they’re looking at labs and clinical records.
BTW, people can work and do a manual PD exchange at work in a private office or bathroom. People have even done exchanges in their car (with the fan off and with clean hands). Does your husband’s workplace have a place where he could have privacy to do a dialysis exchange during his workday? His nurse should be able to advise him how to do this.
