The hardest part about dialysis

[flip]

I go to a small private dialysis center and patients and staff are like one big family. The lady who usually sits next to me has missed her last two visits because she was in the hospital. Today I found out that she was being sent to hospice. (she also has cancer). This happens on a regular basis and I've found it extremely hard to get used to. Does anyone else have this problem?

[jonn r]

yup i hear ya.....i go to a big place and its still the same for us....had this one guy i sat next to must have been 84....but he would tell me stories about the old days in Maine ..it was always kind of nice....he even tried to look like me for Halloween tie-tied shirt...and a long hair wig....well anyway he goes to Fla for the winter , leaves around end of Oct and says "i will see you in mid may...so i sake his hand and off he goes.....the time goes week by week till may 3 i goto dialysis and they tell me sorry jonn ....Mr ______....died the otherday .....its sad....makes me sad....

[kellyt]

That is sad.  You obviously had a great friendship with this man.  I'm sure he checks in on you from time to time. 

[Adam_W]

When I was in-centre, I was friends with a guy who had been on dialysis for 17 years. Shortly after I started home dialysis, I saw him at the hospital when I was there for an access evaluation, and he said that he was stopping dialysis. Then he basically told me goodbye and I never saw him again. That is one of the hardest things about this damn disease when you see people you become close to die. I hate it!

Adam

[cris]

ditto with Mom,  we were on the phone last night and she was telling me the old lady who used to sit beside her in the center, she's gone that made my Mom really sad.

[rose1999]

Dad has exactly the same feelings, 3 of the people he's got to know quite well have died over the last year.  It's very sad but as they are all elderly and on dialysis for the rest of their lives unfortunately it's inevitable.

[stauffenberg]

During the more than 8 years that I spent on dialysis, I repeatedly saw relatively young, still healthy patients come into the center and start demanding right away that they get a transplant and get out of there.  Despite their eagerness and energy to escape, one medical complication after another would arise, and each one would delay the start of the transplant process for anywhere from a month to a year.  Then they would get on the list, wait a few years, but then another complication would arise that would side-track them again.  Eventually they would decline and die.

I started seeing patients dying all around me, and was wondering how the "Invisible Hunter," Death, ranging through the room in search of new victims, kept missing me.  The patient who was dialyzed across from me first had his left foot amputated, then his right foot; then his left leg; then his right leg; and finally his left arm, until I used to think to myself, if they cut off any more of him, there are going to be more pieces left at home than come into the center!  The only thing I could compare my experience to was stories I had been told by relatives who had been in World War II and had seen soldiers killed to the left and right of them, while they were mysteriously spared.  And in fact, the death rate at the typical industrialized world dialysis unit is the same as it was in the trenches of World War I: 13% deaths per year.  Since many of these soldiers went insane with 'combat fatigue' or 'shell shock' from the stress of enduring that high risk of death for four years, how could they expect dialysis patients to endure that threat for the rest of their lives?

[meadowlandsnj]

I go to a small private dialysis center and patients and staff are like one big family. The lady who usually sits next to me has missed her last two visits because she was in the hospital. Today I found out that she was being sent to hospice. (she also has cancer). This happens on a regular basis and I've found it extremely hard to get used to. Does anyone else have this problem?

When I go to dialysis and suddenly don't see a person who I've seen every day I get worried.  You spend so much time with these people it sems like they are family and you do feel bad when you find out they've died or gotten sicker.  It never gets easier (for me anyway) and I'll never get used to it.  And it all seems like a like a big secret, you know???  If I ask about somene they usually tell me in hushed tones what's happened.  I understand about the HIPPA laws and medical privacy but maybe an announcement or a memorial would be nice.  Something, anything to make it seem like we're real people, not a medical ID number to be deleted out of the computer when we die. 

Donna

[RichardMEL]

Totally agree. Dialysis Centres are very much communities. Even mine which is in a large hospital so we see a lot of "in transit" patients - either those who have been admitted to hospital with some problem like a broken access or some other issue, or new starters who start in our unit then move to satelites when they are stable. Still there are a few "core" patients who live locally to the hospital and yes.. when they don't show you absolutely wonder. I find the staff strike a reasonable balance between privacy and letting us know what's going on. Knock on wood there's only been one patient I've known that's passed away.. and that's because she demanded to stop her treatment (and the staff were honestly glad for it because she was rude and obnoxious every single visit) but I know quite a few patients around me are in their 70's so you imagine they're much closer to it than hopefully I am (knock on wood). One guy had a series of heart attacks and was in ICU for weeks and it was touch and go there but he's now back in with us which is great to see(he has a lovely wife who talks to all of us when she comes in every so often). You definitely care about these people since you see them so often. Same with the staff.

[st789]

Therefore, it is a blessing to still be here for many of us.  Keep moving forward to the best of what we know how and leave the rest to the one up there to arrange it.

[Bajanne]

Therefore, it is a blessing to still be here for many of us.  Keep moving forward to the best of what we know how and leave the rest to the one up there to arrange it.

I totally agree.  since I have been at this unit (2005 Sept), three people have passed away.  Each time it was dificult because 1) you got to know them  and 2) it just showed up our situation.  However, they were all three elderly people who had lived a good life. But it hurt.  One was a lady who had been a minister of government.  she used to mispronounce a nurse's name - calling her Healey for Headley.  Every now and then I call the nurse Healey and it gives us such a smile as we remember her.

[flip]

She passed away on Monday and her chair is already filled with a new patient. I guess life goes on, especially in dialysis centers.

[Rerun]

I feel we are all in one huge line and our turn is coming.  I think of Epoman who went wayyy too soon as well as Goofynina.  But, I also think of them making the journey before me and when I get there they will show me the ropes.  Epoman will have it all organized with spell check.  Goofynina will be waiting with a big bear hug.

There is NO future in dialysis.  But, we get to stay one day longer until our name is called.

[G]

Happens all the time. What shocks me is when I ask about someone and the reply is a cold.."oh, they died" As if they never mattered. I want to get mad at them. However, they have seen it so many times they just become complacent. Sad truth.

[David13]

Often the employees are probably fearful about telling the other patients about a patient's death or absence due to hospitalization because of the potential for HIPPA violation.  They might just tell you the bare minimum so that they don't get into "trouble".

[G]

Good point.

[Marley]

It's such a sad thing to get through.  My better half has lost 4 friends in the last 3 months and I can only imagine how hard that is.  My hats off to all in center pts, I send you big hugs.   

Marley   

[RichardMEL]

The flip side, of course, is when you hear so-and-so got a TRANSPLANT!!!!

I heard about one last week from a local unit and a friend of mine knew the woman who got the call. The neat part is when some of the nurses in the know can update you that oh they are doing really well.. have gone home.. kidney working etc.. and of course that's a GREAT time to not see a regular there because you know they're hopefully moving to a more normal life - dialysis free!!

[keith]

The hardest part for me is when a patient crashes andthe techs have to do CPR and they don't put up a screen and you see them working on that patient,and that patient has a dnr and you don't know it and you basically see that person pass away rite in front of you

[Jess21]

yea the other day an elderly man voiced his concern to the tech when he didn't see me in my normal chair "where's that pretty girl?" 
Now granted that was like the 3rd day I hadn't sat there, but it was nice to feel that someone there cared.  He had never said a word to me before.

[kevno]

Over the years I have lost so many good friends who have been on dialysis. When they found out I had Reflux. I was six, Renal Patients were put on the cancer ward of the children's hospital. In the 70s the chance of surviving cancer was very low. Every week all the blinds around all the beds were closed. All you could hear was the trolley to take the dead away. At ten stared dialysis from time to time I saw parents crying and children missing of the unit. Some did have transplants but most died. Went back on dialysis 21years old, then lost my girlfriend. She was having a kidney transplant when she had a massive heart attack. When I went back on heamo I got close to a lot of the patients who were on the same time as me. But got upset too many times. Now try not to get to close to any renal patients, closer to the staff than any of the patients. Now all I say is good morning or see you next time and leave it at that. Just do not need any more upsets.

[draven]

The hardest part for me was having a patient die right next to me. and i had been on dialysis for like only 2 weeks. not a great introduction to dialysis. it also happend when i had about 20 minutes left on the machine. i had to wait for someone to take me off, but they were busy trying to resuscitate the patient. not fun.

[lola]

Otto is the "baby" at his center and he saw this cute little lady crash, she was OK but it was hard on him since this is all new. The kids want to visit and see his machine but he has flat out told them NO, he says it's to depressing and he's afraid the kids will see him in a diffrent way.