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[okarol]

Six months post transplant, haven’t been back to visit dialysis »

By Stu on Aug 14, 2007 - http://blog.therenalunit.com/

So it’s more than six months since I received my wonderful new kidney.

….and I haven’t been back to the dialysis centre to clean out my locker, much less visit the people I spent so much time with there.

What’s up with that?

My wife keeps nagging me to go back and visit the people I dialysed with. I just don’t seem to be able to do it. When I was on dialysis, I used to joke with the nurses:

    When I get my transplant, you’ll never see me again. I’ve spent enough time here for a hundred lifetimes.

Of course, at the time, I was joking, but now that the time has come, I simply refuse to go. Don’t get me wrong, I liked the people at dialysis. Maybe they weren’t the kind of people I would choose to socialise with, but we were all making the best of a bad situation, and hence got along reasonably well.

I think part of the reason I can’t bring myself to go back is my memories of when people I’d dialysed with got transplants, and came back to visit. I always (obviously misguidedly) thought that they were coming back to gloat. Whilst this was clearly not the case, I’d still pretend to be asleep to avoid the uncomfortable conversation:

Me: So How’s it going?

Them: Fifteen minute summary of every blood test they’d ever had since the transplant, plus a summary of all the things they could now do / eat / drink that they couldn’t before (and I still couldn’t do)

Me: Cool

Them: So what about you?

Me: Same shit, different day.

Uncomfortable silence

Them: Cool, well, better go talk to (insert name of patient on my left)

I just have more respect for the daily struggle in these people’s lives to put them through something like that.
...........

[stauffenberg]

About two years after my transplant, when I happened to be in the same hospital (for some x-rays) where my dialysis center was located, I decided on the spur of the moment to drop into the dialysis center.  The nurses all came crowding around me as though I were some conquering hero and were all overjoyed to see me.  We had a pleasant chat for about 10 minutes, and since I was not there at what had been my normal, evening shift time, there were no patients I saw whom I had known during treatment.  I think that is the best compromise: visit the dialysis center, if at all, at a time when other patients who knew you during dialysis will not be present.

[Stu]

I've actually been back now. About six weeks ago.

It was one of the most harrowing experiences of my life.

I'm not sure why, but I just couldn't wait to get out of there. I wonder what this says about me?

[okarol]

I have asked Jenna a few times, if she wants to go back to visit. She does not. I think she would like to forget dialysis ever happened.

[Jill D.]

I have stopped in a couple of times while on sales calls (I do a lot of work with the Human Resources Dept at the hospital where my dialysis unit is.) I used the entrance by the nurses desk, instead of the lobby at the opposite end of the unit. Since I always dialized after work, and would be stopping in during the work day, I would only see a few of the nurses and techs that I knew. They were so happy to see me - I think it was a bright spot in their day, really. I would only stay a few minutes because after the hellos, I wanted to just get the hell out of there.
I would rather see my old "friends" outside of the unit, thank you very much.

[willieandwinnie]

I actually went to clinic this morning to take back 2 cases of saline and some needles. I only went to the training section and only saw one nurse. It appeared to be pretty empty today. The nurse did tell me that the clinic has NO home-hemo patients now. Len got his transplant 9/7 and the other guy got his this past Monday. 

I wouldn't of gone, but I was afraid the saline was going to freeze in our garage.

[KT0930]

When I got my transplant in 2002 I thought a few times about going back to visit the nurses, but never got around to it. Then about a year later I moved out of the area.

[goofynina]

I think if i would have ever gotten a transplant, i would go and encourage others to do their best to get on the list, not only that, i would love to just see all the techs that took care of me and thank them (and the patients that heard me complain)

[kelliOR]

The last Holiday season that I dialyzed,  the machine maintenance man (don't know what his position was called)  brought in a guitar, and sang xmas carols to each shift..... We all sang along, (even those that didn't speak English!)....................thinking back,  I really enjoyed that.........he even took requests......

I'm going to call Fresenius tomorrow and find out what day that will be, and bring cookies for the all the dialyzors and staff....


Thanks for the post..........

Love, kelli 

I am forever grateful for my transplant.

[oswald]

i went back to the unit about a month after the transplant.  it was kind of awkward and for some reason i was nervous.  after i went in, it was not what i expected.  everybody was curious how i felt, alot of hugs, handshakes, pats on the back, they made me feel real comfortable.  i was there about 30 mins. talking to everybody.  i went because my social worker, whos on dialysis there, encouraged me to come because everybody was asking about me.  ive only been there once but i do want to go back.  it seems harder to go back the longer i wait.

[KR Cincy]

I was only in center for 6 weeks, but shortly after we started home hemo training and it appeared like it was going to work, my wife whipped up a pan of brownies and we stopped in to say thanks. I left a note expressing my appreciation for the care (and humanity) they provided, and they told me I always had a chair there if something changed.

[Kidneygirl]

This thread is so interesting! I am doing in-center hemodialysis and have been for almost four years. Saturday I was sitting in the chair pondering if I would ever step foot in the center again if I ever get a transplant. On the one hand, I would like to say hello to all the techs and nurses who took care of me, but on the other hand I think I would feel guilty because so many folks at my center are not eligible for a transplant. I would not want them to think that I was there to gloat. If there was not any possibility of a transplant for me, I could not endure dialysis.

[KT0930]

Old thread, I know, but I had to revive it.

I was out with my family buying supplies for a book report last night, and who did we run into? My favorite dialysis nurse. That was kinda cool, and I mentioned that I had been meaning to call her so we could have lunch together, and now I think I'll do that in the next week or so. I've been back to the clinic once, but that was about two or three weeks post-transplant to drop off supplies that Fres wouldn't take back and I'd never use.

She mentioned that she recognized my husband before she recognized me. He insists it's because I've cut my hair short since the transplant, but I like to think it's because I look so healthy now. It's probably the hair, though.

[RichardMEL]

Thanks for reviing this thread.. for some reason I didn't see it earlier.

I'm very interested in the responses so far - mostly along the lines of "no way in hell would I go back THERE"

I, on the other hand, am actually planning it.

No, I don't know when my transplant is!!!

But I do know I *want* to go back and visit. Mostly for the staff... I love those guys they are like part of my community.. and hopefully I of theirs... like the nurse who had a baby and brought her in to visit when I was on shift so I could see her baby (isn't that sweet?).

Besides, I have promised to take them all to lunch when I have a successful transplant... and I keep my promises

I understand the point about "gloating" when transplantees show up... My unit though is very transitory.. there are very few regular patients.. most folks start at my unit then go to other units for ongoing treatment.. I am only there because I live so close it's crazy to go anywhere else. So it's likely post transplant there would only be 1 or 2 patients there who would know me (and vice-versa).

I see from time to time people come in who have gotten transplants.. and yep the staff are delighted to see them doing so well.. I don't think it's gloating at all.. if anything it gives me hope that yes... hopefully that will be me sometime soon... As opposed to those who have transplants fail... (because usually we see those in my unit.. and that's upsetting).

However I did definitely say to myself I would NOT go in with a big botle of water or something drinking away in front of patients... that would just be so tactless.... I talked to a nurse the other day and she said yep we'll have a beer at the local hotel.. and I reckon that's a great idea too

[Kitsune]

If and when I get my transplant, I will not be back, as I hate that place with a vengeance, and it's not like anyone but like one person there is really anyone I'd want to see again. I will also burn my blanket and pillow in effigy. Ugggh, who'd want to go back to a place like that?

[monrein]

I seem to feel differently than most about this.  While I was on dialysis last time I never met anyone with a successful transplant, only the ones that had rejected and the horror stories were dramatic and scary.  I did mostly home hemo but did about 6 months in centre at the end as my husband was away at law school in Nova Scotia but I had a teaching job at a university here in Toronto.

I felt very close to the nurses and patients in that unit and would have felt rude and uncaring had I not visited after my trx.  Patients had lots of questions for me and some even ended up going on the list afterwards.  Some couldn't of course but I never ever got the idea that anyone felt I was "gloating".  I used to bring little renal friendly treats, magazines, things I knew wouldn't normally be there and I'd get ice or fetch a blanket or whatever.  Those visits also had a purpose for me and my kidney as it helped to drive home the fact that I really needed to take good care of my precious transplant in order to get as much out of it as it had to give and I feel that I did that successfully.  The other patients and nurses also often said they enjoyed my stopping in and when I left they'd ask me not totally abandon or forget about them.  I don't like dialysis, in fact I hate dialysis but it wasn't the nurses or the other patients' fault that we were stuck there and we had some good laughs and passed that enforced torture time with as much spirit as we could muster.

I also did volunteer work with the kidney foundation and those other patients were who I was going to bat for on a number of issues.  I felt, and still do today that my medical people and I are a team.  I feel they care about what happens to  me and most try very hard to do their best.  I also firmly believe that it is my responsibility to let them know as tactfully as possible, or as angrily as necessary, when I don't feel that way or when screw-ups happen.  I am my primary caregiver but I can't do this alone.

I also liked it when people came back to see me after their transplants.  I was thrilled for them. 

RichardMel, your unit sounds a lot like mine and I too loved seeing the babies and have had nurses bring theirs in.  All these little things help us to remember that we're no different than everyone else, we're just on dialysis.

[kimcanada]

I seem to feel differently than most about this. While I was on dialysis last time I never met anyone with a successful transplant, only the ones that had rejected and the horror stories were dramatic and scary. I did mostly home hemo but did about 6 months in centre at the end as my husband was away at law school in Nova Scotia but I had a teaching job at a university here in Toronto.

I felt very close to the nurses and patients in that unit and would have felt rude and uncaring had I not visited after my trx. Patients had lots of questions for me and some even ended up going on the list afterwards. Some couldn't of course but I never ever got the idea that anyone felt I was "gloating". I used to bring little renal friendly treats, magazines, things I knew wouldn't normally be there and I'd get ice or fetch a blanket or whatever. Those visits also had a purpose for me and my kidney as it helped to drive home the fact that I really needed to take good care of my precious transplant in order to get as much out of it as it had to give and I feel that I did that successfully. The other patients and nurses also often said they enjoyed my stopping in and when I left they'd ask me not totally abandon or forget about them. I don't like dialysis, in fact I hate dialysis but it wasn't the nurses or the other patients' fault that we were stuck there and we had some good laughs and passed that enforced torture time with as much spirit as we could muster.

I also did volunteer work with the kidney foundation and those other patients were who I was going to bat for on a number of issues. I felt, and still do today that my medical people and I are a team. I feel they care about what happens to me and most try very hard to do their best. I also firmly believe that it is my responsibility to let them know as tactfully as possible, or as angrily as necessary, when I don't feel that way or when screw-ups happen. I am my primary caregiver but I can't do this alone.

I also liked it when people came back to see me after their transplants. I was thrilled for them.

RichardMel, your unit sounds a lot like mine and I too loved seeing the babies and have had nurses bring theirs in. All these little things help us to remember that we're no different than everyone else, we're just on dialysis.

So nicely said    I have been doing PD @ home for a month, maybe I will take a trip to my unit, I do miss most of them

[spacezombie]

I promised I would visit my PD unit, but the way it is set up I very rarely see other patients. My nurses are so great though I'd feel horrible if I didn't go visit them at least once. I've been sending them cell phone text messages updating on my transplant. Hopefully, no patients will see me and think I am gloating. I'm not, I want for everyone to get as healthy as they can. A transplant isn't always the perfect treatment it seems. I have a whole list of new things to think about (germs! pills! rejection!) but I think it may help some patients to see someone that has gotten a transplant if they are fearful of being put on the waiting list.

[MyRenalRomance]

I drive past my old hemodialysis center from time to time.  Everytime I see that building, I shudder.  While the nurses and techs were so good to me, and I adored them, I can't seem to bring myself to stop in for a visit.
I only got to know a couple husbands and wives (who's husbands were on dialysis) and one couple who's wife was on dialysis.  They were very friendly and would say *hello*, make conversation, and would always say *good-bye* on their way out to go home.  Otherwise, no one seemed to want to get to know each other, even though I would smile and say *hi*.  Even the few ladies who seemed to be approx. my age!  We did have one fellow patient pass away.  Is that, possibly, why some center patients keep their distance?  They don't want to get too close?

My hemodialysis experience was not pleasant.  Each treatment left me exhausted, and weak.
I don't want to go back for a visit. Is that rude?  I feel incredibly rude for feeling this way - and I try to be a kind person to everyone - friends and strangers, alike.  Last Christmas, I baked cookies and goodies for the staff.  On my last day of hemo, I hugged and, personallly,  thanked each staff member.
Thanks for listening.

[petey]

Marvin, I think, feels like Monrein.  He had been at the same clinic for 5 1/2 years when he got his transplant.  He went back to visit often after his transplant (usually once or twice a month).  He enjoyed chatting with the nurses and techs, but he mostly went to see the other patients.  He never gloated, and everyone was so happy for him.  (When he was there, he was the "baby" because he was the youngest one at 39 -- most of the other patients were much older and ALWAYS looked out for him.)  Three and a half years later when he had to go back on dialysis, it was at the same clinic.  He did in-center for over three years.  Last summer, we started home hemo, and, yes, he still goes back to visit at his "old" clinic.  He even stops by the nursing home to see some of the patients who live there on their "off" days to visit.

Marvin is kind of like the "poster dialysis child" (even though he's a grown man) at his clinic.  After the first dialysis round when we found out I could finally be his donor, the patients and staff threw Marvin a big party at his last treatment (day before transplant).  Everybody ate, talked, laughed, and hugged.  Even though there are 75 or so patients at his old clinic, very, very few were able to get on the "list."  So, when Marvin and I were preparing for the transplant surgery, they were all as excited as we were.  Now that he's a home hemo patient, they all have questions for him each time he goes.  They're so interested in how he's doing and the whole process of home hemo (99% of them couldn't even attempt it -- many live in nursing homes, almost all of them are much older -- 70's and 80's, few have a strong family support system, etc.).  They are so happy for him.

The patients have changed over all these years.  When Marvin was in-center this last time (last summer), he had the most "seniority" at the clinic because he had been a patient there the longest.  That was very, very sad for him -- to still be young and have the most seniority.  We keep with the news from the patients at his clinic and are always sad when one passes.  The new ones, however, know Marvin's name and have heard his story.  He'll go in and meet someone new, and they'll say, "So you're Marvin.  I've heard so much about you, and I'm glad I finally got to meet you."

Marvin -- with his constant laughter, happy smile, and bright attitude -- is popular at his clinic.  He laughs, jokes, and FLIRTS with all of the older ladies there, and they love that!  The last time we were there (and sometimes Marvin goes without me), the floor nurse said to me, "It's like when Marvin comes through the door, the sunshine floods in around him."  I cried.  Marvin is an inspiration to others and to me.

[okarol]

I have a fantasy that we will go into Jenna's old dialysis unit and all the people we knew are gone - ALL TRANSPLANTED! I wish it were true. I am a little afraid to go in.