Post-op day 14

[Snoopy]

    Today is 14 days post-op, and things are fine.  I'm feeling pretty good, and have no special problems walking or managing steps (though I tire pretty quickly).  I still wince when sitting down, a bit less when getting up.
    The two halves of my incision seem to be knitting together; for a while, I seriously worried that my belly could "fall apart" once the staples came out. Fortunately, that didn't happen, and I do feel better since they came out last Tuesday:  they had been sort of "catching" occasionally on my shirt.  The swelling has receded, but not totally.  The pants I couldn't close upon returning home do close now, but they're snug; just before the surgery, they were loose.
    The only real mistake I made involved a little experiment I conducted last week--
OBJECTIVE:  To see if I could sleep on my left side (the side of the surgery).
RESULTS:     Ouch!  Dumb, dumb, dumb.  I ruined at least one night of sleep, and since then have had some back and side pain during the day, and more so at night.  Happily, last night I tried to sleep on the right side, and succeeded.
    I'm remembering not to lift too much.  But I discovered something else:  it can be hard to tear open plastic packages—the action of pulling is painful.  Be careful.
    My appetite has not returned.  As before, I can eat when I have to, but never feel hungry.  I've also had a few momentary episodes of mild nausea and borderline light-headedness.
    I'd say the biggest change, though, involves my mood.  I'm atypically subdued and un-excitable (this is particularly striking when compared with my recipient:  a bouncy sort of fellow even before the surgery, since then he has been getting even bouncier from one day to the next [we speak daily]).  Partly, this is physical—I tire easily, and don't really have the strength to get too excited.  Another factor is that since the surgery, (miraculously) I've been insulated from office pressures.  But I think it's more because my nervous energy is gone.  This is not a negative sense of let-down.  Instead, it's a positive sense of tranquility and completion.  I'd been consumed with planning, organizing, and researching my donation for so long.  Now, I'm no longer living with the sense that, if I fail to lose that last kilo or two, or if my blood pressure goes up a little, I'm basically helping kill a sick kidney patient.  I did my part, and it's really out of my hands.  At least until I return to work (possibly in another week), I'm just sort of floating in neutral.  Just not having a packed daily schedule to manage is a shocking (but not unpleasant) sensation.
    Finally, two miscellaneous observations:
1) I think the last time my creatinine was measured was the morning after surgery (it was 1.04), when I was still on the catheter.  I'm due for my first follow-up appointment in about three months.  Is this a long time to go without another creatinine check?
2) I thought I was so clever to buy a pair of Crocs (well, okay, the $5.50 plastic imitation version) for the hospital.  Not only would they grip the floor well, but I could use them in the shower.  It turns out I was only half right.  They're great for walking, but the chief nurse warned me not to bring them into the shower, because they get slippery when wet.  They also take up a fair amount of space in the small case I brought to the hospital.
            Be well, Snoopy

[Fr Pat]

DearSnoopy,
      From what I have read, and from my own experience, the donor's creatinine level may not settle into the new "normal" until a year or two has passed.
     Fr. Pat

[Snoopy]

      From what I have read, and from my own experience, the donor's creatinine level may not settle into the new "normal" until a year or two has passed.

Hi, Fr. Pat.
  Thanks for your post.
  But wait, according to the printout attached to my discharge sheet, my creatinine of 1.04 already seems to fall in the normal range, between 0.67-1.17 mg/dl.
   I knew my number would rise after surgery, and it did rise, from 0.76 the day before.
   But, is my post-surgical 1.04 abnormal?  Will it ever fall below 1.0?  What is the real "normal" for us mono-kidney types?
           Be well, Snoopy

[shelby]

Snoopy,

I am at post-op day 18 and your recovery sounds very similar to mine, which should be reassuring to both of us. I have an appetite but only for bland foods. While I use to be a chocoholic, I can't face any rich foods right now.

I use to sleep on my left side and have had a terrible time adjusting to sleeping. Only seem to be able to sleep in 2 or 3 hour blocks and then wake up to try to re-position myself and tend to be a little thirsty whenver I wake up. The disrupted sleep has led to one or two hour naps in the afternoon, but that's ok, because as you say, the schedule is now clear to spend time on recovery. Also dealing with back pain, perhaps from surgery, lack of mobility etc but seems to be helped a bit with the walking and making an effort to move around a bit more during the day.

Our creatinine levels are also similar. Mine was 74 pre surgery and 103 when I left the hospital. I go for tests next week and then not again for a year. I was also concerned about the lag time and think that I will plan a visit to my GP at the 6 month mark before the 1 year visit to the nephrologist.

Take care!
Shelby

[Snoopy]

Hi, Shelby.
  I'm glad to hear that you're also doing well and, yes, it's reassuring that we're having similar experiences.
  About sleeping--yup, it's hard to find a position that allows my muscles to relax.  A friend suggested a hot water bottle; I might even try it.  It's funny, but though I tire easily, it's hard to sleep at night now.  And I'm usually so exhausted that, by the time I go to bed, I fall asleep in a split second.  In fact, not long after I got back up to my room following the surgery, a nurse bustled in and said, "He needs to sleep! That's the best medicine for him!"  I clearly remember hearing that, and saying to myself, "Sleep? Wow, what a neat idea!"  As my wife explains, before that nurse even finished saying the last word, I was already snoring.  Of course, that's before I made sleeping difficult for myself my trying to sleep on my left side, and hurting myself.
   About being thirsty--I've noticed I'm not drinking enough.  I'm going to try to fill a certain sized bottle every morning, and then keep drinking and refilling it till I've drunk a certain amount. Actually, I don't recall being told how much to drink, but it's got to be more than I do right now. Hopefully, keeping track via the bottle will help.
    Finally, it turns out that my first check-up will be at the 6 week period, not 3 months.  Here's hoping we both have great lab results!!!
         Be well, Snoopy

[shelby]

Snoopy,
I have tried a heating pad and it helps, even just to have it on for 15 minutes before I go to sleep. I also have 3 or 4 extra pillows/cushions on the bed, as suggested by the nurses in the hospital as support for my back and between my legs when trying to sleep on my side, or for under knees when sleeping on back. My discharge instructions say 8 to 10 glasses of water a day - I don't think I'm there yet but always have a glass of water by my side, but still an area for improvement on my part.

Shelby

[Scott337]

Snoopy,

Glad you're doing well.  My creatine level at my 6 month check was 1.8 and only came down to 1.75 a few weeks after that and hydrating.  I can't remember what my coordinator said by they calculate your normal in a percentage range from your baseline when you first tested.  Mine for example is still within the allowable percentile and they indicated my creatine level "new normal" may be higher than my previous baseline.    Regarding the sleeping on the left side thing.  I tried it also about that same time and again about 30 days out (still hurt like hell).  Gradually, I was able to sleep on my right side but it took a substantially longer time to tolerate the roll to the left - I attributed it to all my insides falling into the new void on my left side.     I hear what you're saying about the pulling open of bags - experienced that too.  Didn't last long though.  Keep working on bending over and walk as much as you can tolerate and you'll see your endurance beginning to return and you won't tire so easily.    Take it easy and get your rest.  You need to eat!   Take care and keep us updated buddy.

Scott   

[Aries7]

Hi Snoopy!

I can't believe it has been just over 2 weeks already! Wow!

I am so glad to hear you are recovering well. Others have given you great advice. I can tell you, that I too was easily fatigued for several weeks following the surgery. I gradually got better and back to normal, but from my experience, the fatigue is very normal at this point in your recovery.

As far as sleeping on your left side, ouch. I did not try that until a few weeks past my surgery. You will get back to normal again and be able to sleep on your left side again, but not quite yet.

As far as the creatinine, the highest mine was at one point after surgery was 1.2, but it had settled to 1.1 when I had it checked last year. I have an appointment with my doctor this Friday for my yearly kidney checkup, so I can let you know then what that comes back at. (This will be my 2 year check up - I am a couple of weeks late this year.)

Best of luck with the rest of your recovery. Make sure you allow yourself to rest as needed. Thank you for the update - it is so great to hear from you and how you are doing!

Best Wishes!

Linda

[Snoopy]

I can't believe it has been just over 2 weeks already! Wow!

  Hi, Linda! 
    You know, I can't believe it either. 
    In fact, I made a point of saving my hospital bracelet to remind myself, someday, that I once actually did this....
    Be well, Snoopy

[Dora76]

Hi Snoopy,

I'm glad you're feeling well.  Seems like you've received a lot of good advice from the group here =)  But I thought I'd add a few thoughts. 

It was quite a while before my appetite returned--for me it may have been several weeks.  Even now, I tend to eat much smaller portions than I did pre-surgery.  However, I was probably eating much more than I needed to eat in the first place...! It was very (and still is) a bit disconcerting to me though, because food and sharing meals was a big part of my culture and my identity.

Also, I'd recommend that before you return to work, try to take time to enjoy not having the pressures of the office.  Just as the experience of donating a kidney is a gift (for the recipient and the donor), one of the unexpected gifts I received was the opportunity to reflect on my life and my work.  Sometimes that meant something as simple as taking the time to relax away from the pressures of work and other times it means something much more broad.  Slowing things down was one of the hardest things for me, because I've been used to doing everything at top speed--school, work, graduate school, work again, worrying about my mom.  This experience is teaching me a bit more about patience and also appreciating the good health I was and will hopefully continue to be blessed with...

Thanks for reading and sharing.

Dora

[Snoopy]

Also, I'd recommend that before you return to work, try to take time to enjoy not having the pressures of the office.  Just as the experience of donating a kidney is a gift (for the recipient and the donor), one of the unexpected gifts I received was the opportunity to reflect on my life and my work.  Sometimes that meant something as simple as taking the time to relax away from the pressures of work and other times it means something much more broad.  Slowing things down was one of the hardest things for me, because I've been used to doing everything at top speed--school, work, graduate school, work again, worrying about my mom.  This experience is teaching me a bit more about patience and also appreciating the good health I was and will hopefully continue to be blessed with...
Dora

Dear Dora,
  Thanks for your post.  Indeed, being in a little bubble, free of office pressures, has been an unexpected bonus.  It began over the summer, during my overnight hospitalization for testing.  I was so unused to being free of obligations, once the afternoon tests were over, that I barely knew what to do.  I actually worked for a couple of hours, but just knowing I was free was quite an experience. (After that experience, I remember posting that I'm probably one of the few people donating a kidney as a way to get some rest!).
  Since the surgery, I've been so calm I barely recognize myself (post-surgery, the docs complained a little about my low BP:  to raise it, I suggested we discuss politics).  I think this unusual tranquility is because I've accomplished my mission--my old kidney is now doing its thing for somebody else, and I can pretty much stop worrying.  I've had, and used, an enormous amount of nervous energy throughout my fairly long process, worrying about not getting disqualified, getting a date that didn't wreck me at work, doing lots of tests without the kids finding out, etc., etc. (My kids know now, but I've still told few others).
   I've enjoyed this "time-out", although being this calm is a totally unfamiliar experience for me.  I'm still pretty un-excitable (and fairly apathetic about eating, as you mentioned; this is also unusual for me).  Could they have put some "California juice" in my IV?
   Like you, I also learned a lot about patience.  As a non-directed donor, I'd been pushing for months to get matched with recipients, and then just to get the surgery done.  I actually matched with a total of four potential recipients.  The first two got deceased-donor kidneys before I'd gotten too far into my own testing. The third and I were a team for a few months, but he also was suddenly offered such a kidney before I'd finished my own testing, and took it. I finally proceeded "to the altar" with my fourth match.  Both he, and the previous fellow, taught me quite a bit about patience.  Every delay drove me nuts, but they both kept smiling and saying, if it's meant to happen, it'll happen. I finally concluded that if people on dialysis can be patient about getting a kidney, I can be patient about donating one. Who knows, maybe next I'll take up yoga!...
     Be well, Snoopy

[Dora76]

Dear Snoopy,

Thank you so much for the thank you!  I'm so glad you're doing well, and I hope your recipient is doing well too.  Good to hear you're also enjoying the "time out."

It's funny, I had a tough day at work today and was pretty frustrated, so it was really nice to see your post.  I appreciate your kind words.

It's nice to know there are people like you out there who can relate.  It's so comforting.  I think I'm with you in that small population of people who needed to donate a kidney in order to take a break.

Thank you for your amazing gift.  It truly is admirable there are people like you out there willing to step forward for a stranger.  I can sense the difference my donation to my mother has made...this of course has its own set of challenges...but I really admire your willingness to go in as a non-directed donor.

Take care and continued good luck during your recovery!

Dora

[Snoopy]

Dear Snoopy,
Thank you for your amazing gift.  It truly is admirable there are people like you out there willing to step forward for a stranger.  I can sense the difference my donation to my mother has made...this of course has its own set of challenges...but I really admire your willingness to go in as a non-directed donor.

Dear Dora,
 Thank you so much for your kind words.
 But, I'm convinced giving to a stranger is easier than to a relative. I began forming that opinion last year, when I read Donor Girl and The Reluctant Donor, and being on LDO this past year or so has only strengthened that impression.  In my own case, nobody (including myself) ever even hinted that I owed anybody anything, there was absolutely no old baggage around, I never had to deal with anybody's expectations, etc., etc.
  Although it might seem a "no-brainer" to donate to a close relative, I've come to appreciate how complicated it can get.  So, you have a lot to be proud of!  Congratulations on the incredible gift you gave your Mom.
          Be well, Snoopy

[Dora76]

Hi Snoopy,

Thank you so much for your kind words. But, I'm convinced giving to a stranger is easier than to a relative. I began forming that opinion last year, when I read Donor Girl and The Reluctant Donor, and being on LDO this past year or so has only strengthened that impression.  In my own case, nobody (including myself) ever even hinted that I owed anybody anything, there was absolutely no old baggage around, I never had to deal with anybody's expectations, etc., etc.
  Although it might seem a "no-brainer" to donate to a close relative, I've come to appreciate how complicated it can get.  So, you have a lot to be proud of!  Congratulations on the incredible gift you gave your Mom.

Thanks, I never thought of it that way.  I think I kind of try not to because it's always made me feel uncomfortable when people say things like, "You're so heroic," and such...  That gives me something to think about, in a good way.  At times, I feel guilty for healing physically, especially when my mom isn't doing so well.  So I guess there is some "baggage" that I'm still coming to terms with.  Sorry, this isn't a very completed thought, but just wanted to say thanks for getting me thinking.

Seems we keep going back and forth with the "thank yous" =)  Hope all is well.

Dora