Roommates?

[Snoopy]

   I'd like to ask our donation veterans their opinion on the following:  A recent donor from my transplant center mentioned that the one thing she disliked about the process was being in the room with her recipient (she had donated non-directed).  She liked her recipient fine, but felt uncomfortable, because she didn't want her recipient to feel guilty if she (the donor) complained of pain, etc., and sort of resented not being able to complain without that worry on her head.  
   Now, I'll throw in one more thing.  One of the staff at this site (either the social worker or the coordinator), when I asked how soon I could expect to start walking, etc., after surgery, specifically (and spontaneously) mentioned that when donors room with their recipients they get up and about faster, because they don't want their recipients to feel guilty when hearing them complain.
   I don't know if my center actually has any formal policy, or if they just slot people into rooms as beds free up (though I did hear that, right after surgery, I'd be near the nurses' station).  But--if anyone asks my preference--what do you think the pros and cons are?
          Thanks, Snoopy

[sherri]

I think it really depends on your relationship (or lack thereof) with your recipient, your family, who will be will you etc. I donated to my brother, with whom I am not that close. I did not want to be in the room with him and his wife as I felt this would have added more stress to my recuperation. Privacy may be an issue also. I would not want to be in the room with someone of another gender (even a sibling) for modesty. I desperately wanted a private room so that my husband could stay with me. Had I been in a double room my husband would not have been allowed to stay since most hospitals do not allow opposite gender in a room overnight with a roommate for liability reasons. When I asked my coordinator about a private room she could not guarantee me one. So the only thing I asked of my brother during this process was to make sure I get a private room on Marburg (which is the VIP suite at Hopkins). Most of the transplant docs usually put their donors there out of respect for their act of kindness, but my surgeon did not. So I did have to push for it.

At pre op, I remember lying on the gurney and my brother was in the cubicle next to me. The nurse opened the curtain between us assuming that would be ok. Although I had taken Ativan the night before to relax me prior to surgery, I remember feeling very uncomfortable and closed the curtain a little for privacy. You will probably have to ask specifically for what you want otherwise assumptions will be made.

Most hospitals also put recipients in private rooms because of infection control. Maybe in the case of a parent and child that is an exception or in the case of spouses. I, personally think it is for both patients' best interest to be in separate rooms and have separate care givers. You will each need your own advocate in the hospital to help with pain medication, taking walks and just being on top of things when you are highly drugged with pain killers. You may choose to have your rooms close on the same floor so you can visit, but most hospitals put you where there is room. At University of Maryland there are special "donor suites" which are a little nicer than the regular rooms (looks like a hotel room) and they are at the other end of the unit from the recipients. This encourages patients to walk to the other ones room and get the exercise. When I volunteered, most of the time, the recipients were feeling much better than the donors and could do the walking. But the donors did feel more uneasy about not being so perky.As much as everyone tells you this is real surgery, many donors are still unprepared for the pain, discomfort and post op feelings of abdominal surgery. Remember the sick person is getting better, the donor is more compromised than when they came in. so you may need a few days to feel "human". You can certainly visit when you are feeling better at your own time. A few days later, when I was home i came back to the hospital with my sister to visit my brother and his wife and it was much more comfortable being dressed and not in pain and less awkward.

Think of yourself as a regular patient having surgery and decide what is best for you and your family and your recuperation process.

Sherri

[Orchidlady]

I had always assumed my husband and I would be in the same room, but found out when we checked in that not only were we in different rooms but in different wings! They said there were a couple reasons - first, because of the same last name they did not want any confusion with meds or procedures by having same room or same nurse. Second, he would have different needs -both pre and post surgery - than I would. As Sherri mentioned, he was in ICU the day of and day following surgery. This was for isolation purposes because of the massive amounts of anti rejection and steroids being pumped into him to prevent immediate rejection. There was no way I could even walk down to see him until the third day when they had moved him to a regular room on the same floor.

I did have a roommate - the surgeon was kind of embarrassed the first day he came around and commented that they had wanted to give me a private room but there wasn't one available at that point in time for me. It really didn't bother me - the woman in the room with me was a delightful person and, with both of us recovering from major surgery, we weren't exactly causing a ruckus for the other person! I never felt that having a roommate was a slight or a problem.

In hindsight, I am actually glad we weren't in the same room. As the recipient, he was hooked up to a heckuva lot more "hardware" for a longer period of time and required a lot more attention and care than me. If I had been in the room, as they told you Snoopy, I probably would have been fretting more over him and, with the constant activity in and out of the room, would not have been able to get my own needed rest.

[dodger]

I had a private room and really liked it.  If I had to fart I could, if I snored who cared, if I slept no one bothered me other than the staff, which was too often, haha.  Get a private room if possible, those first few days you are miserable and you deserve the privacy.  Being a donor should have its rewards.

[PhilHoover]

being in the room with someone else after having this surgery.

The University of Alabama-Birmingham does their very best to give the "donor" a private room....and it was wonderful!

[Orchidlady]

I respectfully disagree, Phil.
They try to give us a private room out of respect and as a small token to honor what we have done.
Remember that there are people out there who have probably gone through even more invasive surgeries and end up sharing a room. Our surgery, in and of itself, is not a justification for a private room - it is the selfless act that is being honored. 
My roommate was actually worse off than I was. She had stomach cancer and they had removed her stomach and re-created a stomach out of intestine for her. My recovery and needs were nothing compared to what she was going through.
It actually pleased me to be there, as having someone there as a roommate was a comfort to her instead of being by herself.
I would  have cherished the private room, but I don't think I am any "great shakes" that I would have expected or demanded it.

[ohtobeahayes]

I actually liked having a roommate. She helped keep my spirits up, and gosh, she was so interesting. It just so happened that she was a type 1 diabetic who was there to receive a ...oh, pickles I can't remember the type of transplant she was receiving, but she is now off of insulin altogether for the first time in 30 years. Seeing what SHE was going through helped me to feel *better*- what did *I* have to complain about? Her bed was FULL of pills and medicine and the drugs they gave her were making her so sick. When she was feeling okay, we had wonderful talks about life and our super amazing bodies.

I like people.
For my first major surgery with was 11 months previous to the kidney donation, I had a private room and I liked that. It was my first time dealing with the kind of pain that comes from having an organ removed and I was sore and bleeding, and happy that I had my own space to adjust and practice dealing with it all. I can see how some people like being alone.

[treehugger]

I agree that, in general, it's probably best to be in a different room from your recipient, for lots of reasons.

Beforehand, I didn't really care either way if my husband and I shared a room, but found out the hospital won't put people with the same last name in a room (in case of mix-ups) and that turned out to be best for us anyway. I donated a day earlier, and I started feeling better much sooner, and, frankly, I don't think I would have had the patience to deal with him (I mean when I didn't feel good) *and* his visitors. So, separate rooms were perfect for us. I went home a day and a half earlier and by the time he came home, I was rested and ready to be a sympathetic wife.

Now, as far as a randomly assigned roommate, I was told ahead of time that the hospital does what they can to give donors private rooms, but it obviously depends on lots of variables. Now, the majority of the rooms on the transplant ward are singles anyway.

For my first night I ended up having a roommate (another donor) and she was a horrible roommate. She was rude and demanding and mean to the staff. She moaned and groaned (loudly) constantly and she watched TV all night (loudly). I felt pretty awful for the first 24 hours (nausea, not pain) and didn't feel able to discuss any compromises with my roommate, like I might have if feeling myself. So, I stayed quiet and suffered.

My mom requested a move to a private room for me, the staff accommodated us, and right around the 24-hour mark, I got to move. The silence was heavenly!

Honestly, I think I would have been fine with a nicer roommate, but since I had a dreadful one, I felt a private room was a necessary luxury for healing!

Kara

[Barbara S]

I was in a room by myself - and my brother, was right next door. 
We had a bet as to who would visit who first - and of course being the driven person I am - I was up and in his room first thing the next morning. 
It was then, that I got to watch him drink orange juice - for the first time in probably 5 years, the look of joy on his face at that moment alone - made i t all worth while.

I think having the privacy was nice - for both of us.

[bergstromtori]

That is funny.  I asked my friend what he was going to have after the surgery and it was gallons and gallons of OJ.

[PhilHoover]

I had lots of visitors...and I couldn't have had them if I had been sharing a room with someone.

[Scott337]

I was in a room with someone other than my recipient.  I was thankful to have the sounds of someone else in the room from time to time, but it was a pain sometimes trying to arrange sharing the bathroom   I thought it was awkward trying to watch TV or have a conversation with my wife while my room-mate was resting/sleeping.  Anyway, I was mostly thankful to have a Minneapolis skyline view at night when I couldn't sleep (for some reason or another it was a comforting sight).   I guess I never would have thought I rated a private room and may have felt a bit self-conscious.


Scott   

[WilliamLFreeman]

Snoopy & y'all,

Snoopy's first posting disturbed me, due to an apparent naivete, perhaps even insensitivity, of [presumably] some centers.  Not every donor-recipient pair wants to be in the same post-op room -- or even briefly in pre-op beds in the same space, as Sherri related.

WITHIN-NUCLEAR-FAMILY DONOR-RECIPIENT.  The kinds of pairs most likely to be comfortable together are donor-recipients who are spouses, or are parent-child.  Even in those kinds, though, exceptions will occur -- in parent-child pairs, children who are older [especially teens] or different sex from the parent donors may be uncomfortable.  For within family donor-recipient pairs, centers should ask each person separately about his/her wishes, and do so in the same non-pressure manner most centers ask about desire to donate.  (Ask each one separately, after telling both that the default arrangement is to separate them.  That approach means that if one of the pair says "yes" to being together, and they end up separated, that the "yes" person does not know if the other had said "no" or if simply being together could not be arranged.)

NON-FAMILY DIRECTED DONOR-RECIPIENT.  Many non-family directed donors have not experienced together moments revealing of body and bodily functions more than are revealed in public places.  No center should assume both people in those pairs would be comfortable together in body-revealing gowns, passing gas & urine & poop, snoring, etc.

NON-DIRECTED DONOR-RECIPIENT.  This group is most likely to have bad consequences of the center simply making them roommates, even if many such pairs turn out to be apparently OK in the same room.  In the The New Yorker article a few years ago about non-directed donors and recipients, the majority of an [admittedly] small number of non-directed donor-recipient pairs did not like each other once they met.  In my case, the recipient-owner of her "new-used kidney" (that had been "recycled" from me) and I get along quite well.  But in the days before we actually met for the first time, 15 months after our surgeries, I felt like I was on a blind date:  "Will she like my wife and me?  Will I like her and her husband?  Will we get along well?"  I did not want to have those questions coming to the fore in the post-op period.  (I appreciated knowing right away, however, that the recipient's kidney, formerly my kidney, started peeing even before they connected its ureter to the bladder!    )

As Sherri wrote, the need to protect the recipient from infection while starting the immune-suppressing drugs means that most centers restrict visitors to recipients somewhat and require a certain level of "infection precautions."  A roommate -- any roommate -- in the same post-op room complicate those precautions.  Moreover, those restrictions and precautions for visitors to the recipient also apply to visitors to the donor if the two are roommates -- thus unnecessarily restricting visitors to the donor.

Furthermore, just as donors may feel bad if they learn the recipient is having a complication or bad experience, so too recipients may (indeed will likely) feel bad if they see that donor is having a bad experience with pain, nausea, etc.  In fact, the donation surgery is usually more painful and gastrointestinally upsetting to the donor than the recipient surgery is to the recipient.  The reason is that the donor's kidney typically is not placed in the recipient's abdomen, but outside the abdominal cavity, just under the skin and fat in the lower pelvic area.  (If the transplanted kidney were placed within the recipient's abdominal cavity, the recipient would have all the complications most of us donors either had or read about on LDO.)

Finally, several LDOers have reported emotional complications, even conflicts, within donor-recipient pairs after donation.  Although not common, they should not be potentially exacerbated or revealed by the two people being roommates in the immediate post-op period.

Returning to Snoopy's original example, of a non-directed donor (who, I assume, did not know her recipient) being a post-op roommate with her recipient:  not a good idea -- IMO as both a non-directed donor, and also as a family physician who has seen (and tried to help) too many different, difficult, emotional complications among people in close relationships.

Bill

[smudge]

My recipient and I had expected to be roomates as no-one had told us otherwise and we knew other tx patients who'd had transplants at other UK units who had been in the same room.

So, we were a bit surprised we weren't in the same room and, in fact were at different ends of the ward.  Caused a few logistical challenges as we'd planned to share some toiletries, food etc but because we had the same nurses who were just looking after us, they were happy to act as couriers until I was mobile the day after surgery.  I understand the arguments that the recovery of both donor and recipient may be compromised by being together but I think we would have preferred to be together.  Neither of us had any complications so maybe that helpful.  At my hospital they try to give donors a single room but due to infections there weren't any when we had our transplant.

My recipient was on a nice light, airy 4 bedded bay with three youngish women, two of whom had also had transplants.  I was in a 6 bedded bay which was very dark and my roommates were 5 elderly ladies, 4 of which were in varying stages of end stage renal failure.  The other was a renal patient with cardiac problems so as she needed dialysis was being treated on renal.

The lady next to me was quite ill and liked to have her curtains drawn around the bed which, because I was in the corner of the ward, meant I only had a view out of the end of my bed which was quite dull until I was up and about.  Once I was, I spent all of the day after transplant with my recipient and all our visitors came there.  I was discharged the following morning so that was fine.

Perhaps not ideal, but thanks to the NHS all free of charge so no complains really!