I just retired and and had a whole new life planned. An angioplasty procedure went terribly wrong and I lost my only remaining kidney. I have just switched to PD thinking it would be better than hemo. I sometimes have terrible pain when draining and filling and my stomach is sore all the time. The PET and an xray showed everything is normal. I know the signs of depression and believe I am headed there. I am very angry!! I would appreciate some encouraging words. Thanks.
I am really glad that you found our website message board and that you posted so honestly. As a social worker who worked for a long time in dialysis clinics with patients doing both in-center and home dialysis, I have to address what you say you’re feeling emotionally and tell you that what you’re feeling is perfectly normal. Having kidney failure is like losing someone you love. Coping with kidney disease is like living through the death of a close loved one. You move through it and you learn to live with it and sooner than you think, you’ll begin to enjoy each day more and more.
Speaking of the future…You probably wonder what your future is going to be like. The media talks so highly about transplants but doesn’t tell viewers that there are people that have lived a quality life for decades thanks to dialysis. I know several people who have lived 25-35 years on dialysis and most of the long-term patients that I know have done home dialysis. They have married, raised children, worked, volunteered traveled, made friends, and done those things that others do. Bottom line…You should be able to do many of the things that you planned to do in your retirement.
There is help for your depression. Learning to change the way you talk to yourself can help a lot. Medicine can help you be able to see a little light at the end of the tunnel. But both talk therapy and anti-depressant medication seem to help even more. However, if you get anti-depressants, it takes weeks to notice a difference. The closest counselor to you, is your dialysis clinic social worker who counsel with you to help you define future goals and work toward them. However, your social worker can also refer you to a counselor in the community if that would work better for you.
So far as your symptoms, are you doing CAPD (manual) or CCPD (cycler)? If you’re doing CCPD, you might want to ask your training nurse about this abstract:
1: Adv Perit Dial. 1999;15:125-6.
Tidal peritoneal dialysis to achieve comfort in chronic peritoneal dialysis patients.
Juergensen PH, Murphy AL, Pherson KA, Chorney WS, Kliger AS, Finkelstein FO.
New Haven CPD, Connecticut, USA.
Patients with end-stage renal disease on chronic peritoneal dialysis (CPD) can usually tolerate continuous ambulatory peritoneal dialysis (CAPD) or continuous cycling peritoneal dialysis (CCPD) without abdominal discomfort or pain. In some patients, pain or discomfort occurs with complete drain of the peritoneal dialysis solution or upon initiation of dialysis filling when the peritoneal cavity is empty. We report on the use of tidal peritoneal dialysis (TPD) as a modality to alleviate this pain. Of 136 patients in our CPD unit, 18 (13%) were complaining of pain with complete drain or upon instillation of PD fluid. All were placed on TPD after other causes for abdominal pain were excluded. Six patients were placed on 25% TPD, and 12 patients on 50% TPD. The mean Kt/V of the patients on TPD was 2.46 +/- 0.68. With TPD, all patients had complete relief of abdominal discomfort. Patients who develop abdominal pain with complete drain or fill when the abdominal cavity is empty would benefit from TPD and be able to continue with CPD.
I wish you well with your new journey with dialysis and hope that you meet new people through this message board or at your clinic who have already made their way down that path who can help you along the way.
Hi mrbones - sorry you are feeling so discouraged. ESRD can be difficult to handle mentally. I am glad to here that you chose PD - for me it was a God send! I had previously been on hemodialysis & the difference between the two is like night and day (my personal opinion)
When I first started PD I also had frequent - sometimes excrutiating pain when doing my fills & drains (I’m on CCPD)- but I talked with my PD nurse and have changed the settings on my machine to TIDAL which has helped immensely! Since I am dry during the day, I occassionally have slight discomfort on my last drain - but not near as bad as it used to be.
So talk with your PD nurse, this shouldn’t be painfulm,a few minor adjustments will probably help.
Next step - get out among others! Sitting at home is not good for anyone, and it’s easier to feel sorry for yourself when you are at home! Believe me, I’ve had plenty of pity party’s myself. But I have come to realize how lucky I really am. I could be confined to a wheelchair, paralized, unable to feed or clothe myself. I am a very independent person, so it’s going to take more that this to hold me back. Even if it’s nothing more than going to the library, the grocery store, or maybe you could volunteer some time to a nursing home, library, church or other organization. You are ALIVE - so get out and live! If I can be of any help - please don’t hesitate to ask!! Please keep in touch - Godspeed…CJ
I talked with a home dialysis nurse today who suggested another possibility. Although rare, it’s possible that your peritoneum could be too acidic. He said that they’ve had a couple of patients with your symptoms that they looked for every other possibility and there was nothing else He said that sodium bicarbonate in liquid form when infused into the peritoneum helped his patients. Ask your doctor and or nurse if this might be your problem.
I know the signs of depression and believe I am headed there.
I’d always heard that antidepressants “take weeks to start working.” Actually, per a psychiatrist I know, this isn’t quite true. They can start working as soon as one week. If one hasn’t started working within a few weeks, the doctors would switch you to another one. So, relief may be at hand sooner than you think, if you seek help for depression.
Mrbones, I’m with you. My ESRD is a result of military service in central America fifteen years ago. Malaria is the root cause, but I didn’t know that until a year ago. When I found out my kidneys were going about five years ago I went a little nutty. My anger cost me a marriage, not being able to work as I got sicker and sicker cost me a house. It got really dark for a while there and I didn’t think I’d have the strength to go on. I do take Lexapro for depression and I’m pretty sure I’ll be on it the rest of my life. I got lucky and the Lexapro took around 48 hours to work. That was three years ago. Swimming in my own pee dulled my mind as well and I found that Ritalin combined with Lexapro elevated my mood and greased my brain cells to the point that I can function. That’s what worked for me, and I have to tell you it’s not so easy for everybody who decides to get on an SSRI. If you don’t feel better, switch. A good doctor will work with you. I can tell you that it doesn’t help that you are retired. I’m 37 and with VA and social security I am able to retire, but after about six weeks I realized that I’m just waiting around to die unless I get off my ass and do something meaningful with the time and energy that I have left. When things are dark it does no good to hear how it’ll get better, or that you should cheer up. You just have to trust that your perspective WILL change with time. I had to figure out that although dialysis sucks (I do PD), I have to say a special prayer for the folks that came up with the dialysis technology. Thirty years ago I would be a dead man. I figure I must still be alive for a reason, and I’m learning to listen with my heart and learn the language that is spoken when you begin the search for a purpose. Hang in there.
Dear SargeantSoldier,
Welcome to Home Dialysis Central, and thank you for your very articulate post. Just curious…when you say:
after about six weeks I realized that I’m just waiting around to die unless I get off my ass and do something meaningful with the time and energy that I have left.
What have you chosen to spend your energy and time on? You’re obviously bringing a lot of intelligence and depth to the table.
I’m not sure what I’m going to get busy with right now, I just know I have to find something to do. I always thought retiring would be lots of fun, but it’s pretty boring. I’m 37 and everyone else my age is WORKING! Plus I have to take into consideration the unpredictable days of feeling sick to my stomach, run down, and washed out. Kind of hard to go back to school like that because I’m afraid I’d miss a lot of days due to illness. However, money is not an issue, and health care is covered. Yes, I know I’m very lucky in that respect. It saddens me greatly that so many ESRD patients have no way to earn a decent living. So anyway, I can’t get a transplant because MPGN II would just eat the new kidneys, so I’m pretty much stuck with dialysis for life. Therefore I can take my time and look around and see where I can make at least a small difference in the world. If I can remain stable with my health I hope to go back to school. I have a History degree. What I want to do will require me to take a lot of Math, A&P, Chemistry, and Physics. I would like to get a Master’s degree in Prosthetics Technology. I hope to put together a mobile CNC machine that can go to remote parts of the world and custom fit amputee’s with a perfect fit. I feel kind of silly admitting it, but I got the inspiration for this idea from, of all places, the Howard Stern Show when he was interviewing Miss Amputee 2005. A listener fit two of the contestants with updated legs at no charge. It kind of hit me right then. I’m not in a hurry to go back to school, but I have started to work on Algebra problems at least keep my brain active.
Prosthetics technology is an excellent field. Good prosthetics make a tremendous difference in amputee’s quality of life, by improving their appearance, ability to move, and reducing pain.
There’s a wonderful magazine (we get it in our office) put out by the National Limb Loss Information Center, which is part of the Amputee Coalition of America. It’s called In Motion. They are organizational partners with the American Orthotic & Prosthetic Assocation, the American Academy of Orthotists and Prosthetists, and the Board for Orthotist/Prosthetist Certification. You can learn more about the coalition on their website, at http://www.amputee-coalition.org.
Many years ago, I heard some very good advice, which boils down to, “the next 5 years will go by anyway”. Point being, whether you take a step (even a tiny one) toward your goal or not, 5 years from now, 5 years will have passed. You’re fortunate to be young, intelligent, and not to have to worry about income or healthcare. I hope you do go back to school and make a difference in the world. 
That’s what I’m trying to get across with this thread. The past five years did happen and the beginning of that five years was horrible. The point is that you’ve got to keep your chin up just enough to get through the rough spot. Not having kidneys sucks, it’s not fair, but what the heck is fair? It sucks to have to face up to one of the more grim paths in life, but like my old man always said, “There ain’t none of us getting out of this alive.” Better to face up to it, realize life is short, and start finding joy in the little things. You know, sunsets have never been so beautiful.
-Cheers!!
Many years ago, I heard some very good advice, which boils down to, “the next 5 years will go by anyway”. Point being, whether you take a step (even a tiny one) toward your goal or not, 5 years from now, 5 years will have passed. You’re fortunate to be young, intelligent, and not to have to worry about income or healthcare. I hope you do go back to school and make a difference in the world. :D[/quote]