One week out

[shelley]

Seven days ago I joined the donor club, and my recipient Heather is doing well also.  I wanted to share a bit of my experience.

Day 1.  Waking after the 4 hour surgery I am conscious of only one thing:  NAUSEA.  A big black word filling my being.  They keep asking me about "pain" and I don’t know how to answer, only "Nausea" comes out.  I throw up several times but throwing up wasn't as bad as I thought it would be.  I knew to expect it because of this forum.  I am told everything was routine except I had double arteries & double veins, so they'd had to do a little extra sewing, kind of like sewing two pant legs together.  Heather's new kidney produces urine immediately.

Day 2.  Stop pushing dope on a rope, they give me oxycodone instead.  They keep putting that wonderful zofram or whatever it's called into my IV, thank you, thank you.  Drink a little water, a little apple juice, a few spoonsful of broth.  Dr. Bill Freeman, who I met here, comes to visit, cutting short his vacation to do so.  Bless his giving heart.  Keep drifting off.  At some point I walk into Heather's room and back.  Getting out of bed is a big deal, you have to re-learn how to do it without using stomach muscles.  Cut back on oxycodone; I want to be able to poo someday.

Day 3.  Probably the worst day in terms of being uncomfortable.  They take out the catheter and I am able to pee right away.  The gas pain is huge; nausea still a major hanger-on.  Zoltan or zolfran my new bff.  Awesome nurse Cheryl, bless her forever, gives me a shower and gets herself all wet in the process.  At some point I pass some gas and i think the earth moved.  Off all pain meds, still not eating more than a bite or two.

Day 4.  A bit more alert, trying to walk every hour, visiting Heather.  She has gained 25 pounds (yikes!) feel so bad for her, even if it is water.  Is my kidney not doing a good job?  Then I learn that her creatinine has dropped from a pre-surgery 7 to 2.4.  I had been running a slight temperature (100-101) but it dropped so they let me go back to the hotel.  I walked.  Two blocks.  What I like best about the hotel:  I can curl up on my side, great for farting, or at least trying to.

Day 5.  REALLY need to poo.  Not happening.  I am SO not hungry.  Now a new thing:  the Rash.  Thank God for this forum, or I would have freaked out.  Knowing others of you have had The Rash and survived, makes me know I can.  It’s actually hives I think.  Raised red bumpy areas that itch and burn like fire ants, at 2 of my incision sites, on my sides, back and butt.  Tim gets me Benadryl and I can live to fight another day.

Day 6.  Really REALLY need to poo.  I decide, it WILL happen today, somehow.  Remembering Fr. Pat,  I force down 12 prunes one after the other.  Drink coffee, glass after glass of water.  At last!  Once again the earth moves or maybe it is just my bowels.  Funny how you can turn into a self-centered whiny wimp right after doing an altruistic thing like donating a kidney.  I call the hospital about The Rash which is spreading and intensifying.  They’re completely stumped.  Take more Benadryl, wait for my appointment on Wed.  I don’t freak out because of LDO.

Day 7.  Today I’m wondering if, while they were transplanting my kidney out, they were transplanting in somebody’s else’s gastro-intestinal system?  Whosever’s it is, I understand why you didn’t want it.  I guess it will take some time for my innards to return to normal.  I really have no pain from the surgery itself; I’m not sure I ever did…it’s all been the nausea, gas, constipation.  Tell me, dear LDO, that this too shall pass and I will believe you, because everything else you’ve told me so far has been right on the money.

Another LDO person I’d like to thank is Christine Robinson.  Throughout this whole thing I’ve been reading her book, Beside the Quiet Voices.  It felt like having a friend in the room, talking to me from a rocking chair over in the corner.

Heather’s recovery is taking longer than mine.  The anti-rejection meds give her terrible diarrhea and she’s only lost half that water weight so far.  Still, she says “I’m not hooked up to that MACHINE anymore, and I’m putting out real yellow pee!”  It is all worth it.  It is all worth it.

[Jewels]

Yay Shelley!  I am so happy for you and Heather.  Everything you talk about here is so familiar from 6 weeks ago for me.  The pain from the surgery is the smallest piece of the pie.  My misery was all GI related. I ended up in the ER on day 9 I was so nauseous and dehydrated.  Zofran via IV is the best thing ever!  They gave me pills to go home and they helped but not as effective as the IV.   It was day 16 that it all turned around for me...about 1pm in the afternoon for the first time since surgery I felt hungry and not nauseous.  Your innards will normalize...promise!  I didn't think I would ever have a normal appetite or ever poop regularly again, but it does, really! The only positive part of all that is that I lost 14 pounds in those first 2 weeks post-op.  I think it was about 3 weeks when everything started acting like it's old self.

Being on this side on donation is the best feeling ever!  Congratulations...you rock!

Julie

[mxprincess]

Shelley,

Thanks for the one week update! I am glad the two of you are doing well, keep the updates coming!

[smudge]

Hey Shelley

Thanks for the update which brought back some memories of first week out post-donation.  Am so grateful I did not suffer from post-anaesthetic nausea

I completely understand about the feeling that you now have someone else's GI system.  I haven't read all your story but I assume you had some kind of laparascopy surgery rather than open.  Even if you didn't the same principles apply.

A general anaesthetic affects the bowel and sends it to sleep as well as you.  It therefore needs to 'wake up' post surgery - this is the case with any GA.  Secondly as you have noted you have been given painkillers that are known bung up your system.  Thirdly, with laparascopic surgery, various organs need to be moved about to give access to the kidney.  If your kidney has come out through a bikini line incision or anywhere close then your bowel will have been moved about.  The bowel does not like being moved and will respond by going on a strike a bit.

So, add all those factors together and it's hardly surprising you feel the way you do.  I remember downing a litre of prune juice in desperation about 3 or 4 days post transplant but it worked.  Keep up the fluids, keep up the prunes and I promise you, your bowels will feel like they are your own again.  But it may take a week or so, maybe even longer if your bowel is especially senstive. 

All the best

S

[WilliamLFreeman]

Shelley,

It was a pleasure to come back from Canada early to meet you in person for the first time, & to visit you 1 day post-op.  You may not remember most of my visit & what you did, but you were AWESOME.     & yours husband, Tim, too.  (No wonder you married him.    )

And then meeting Heather & daughter Libby & husband Dave -- Heather was IMPRESSIVE.  No wonder you wanted to donate a kidney to her.  2 peas on the same pod.   

Although I never got to meet Sidney in person, I saw that he was doing his thing all right when I was there, at more than 100 cc. per hour of real yellow gold!    (For those who do not know, Sidney is "Sidney the Kidney" -- previously in Shelley, now safely in Heather.)

WELCOME TO THE CLUB, SHELLEY!  Fr. Pat will give you our secret handshake.   

Bill

[Scott337]

Shelley (and Heather) - prayers answered - you're out the other side and congratulations.  Now that you've passed (potty humor) through the worst part, I'm certain you'll begin to feel gradually better each day.  It seems the body reacts in funny ways to the whole donor side of the experience ( the gas, intestinal revolt, bowel games like "urge but no passing" and odd things like your rash).  I agree that Christine Robinson is a great read but I caution you...she can become addicting.  Once you're hooked, your nausea will give way to laughing, which will lead to uncontrollable farting and who knows what next...She's an amazing source of support and comfort, as-well-as quite humorous.    I hope your recuperation moves along quickly and you begin feeling much better soon.  Take care of yourself and please keep us up-dated.  Welcome to the club.  Our best wishes and prayers to Heather also.   

Scott   

[jstx]

Shelley, welcome to the club!  So glad everything went well for both you and Heather!  I'm just repeating what everyone else has already said but yes, this too shall pass (literally!)  I have IBS and couldn't even imagine what constipation is like.....I have the opposite problem usually.  So when my nurse wanted me to take a laxative I said no way!  I ended up giving in to a mild stool softener because I was having problems going to the bathroom.  Once I started going, it seemed I couldn't stop so I stopped taking the stool softener.  I was paranoid about having problems on the airplane on the way home.  So I tried to hold off until I got home and then started the stool softener again because I was so stopped up.  It was very frustrating but it did pass and then I had bad IBS problems for weeks.  I told my personal internal doc that I was having problems several times, and when it was getting close to my return to work and I was really worried about having problems at work she suggested fiber.  It helps stop you up if you have the runs, but helps to loosen you up if constipated.  As it turned out my body finally got things figured out and I was pretty good the day after I spoke to her.  Still have had problems off and on but life is pretty much back to normal now.  Before you know it your normal GI track will be back!  I sympathize with you on the nausea too, by the way.  That was one of the first things I noticed.  Hopkins was great about giving me the anti-nausea meds regularly and they helped immensely.  My nausea went away after a week or so.  I never had "the rash" but I did have a lot of itching....looking back I just giggle at how I must have looked but I was constantly scratching when the docs and nurses were in my room.  They kept asking me if the pain meds were making me itch and I kept saying no, but now I think that they were for sure causing it.  Once I stopped them the itching went away.  I guess I kept saying no because it felt so good to scratch like it was "quenching the itch" that I didn't think I had a problem......medicine-induced dumbness I guess!  And they never really questioned me much when I would tell them I was fine.  Maybe they needed something to laugh about and I was that something each day! 

[shelley]

Thank you all for your encouraging responses.   It's 2 weeks today and I have been having a rough time of it.  The hospital says I'm "unlucky" because first I got hives, then a urinary tract infection.  I'm on the 2nd med for the UTI because one of the 2 bacteria is resistant to the 1st med.  Thankfully, the hives went away on their own.

I still can't eat more than a couple bites of something. just enough to get the pills down.  Now I have a new problem that I want to ask about.  My back is killing me.  On the left side where the kidney was removed.  I can't even sit upright in a chair for more than a few minutes.  Asked my donor coordinator and she said "maybe it's phantom pain".  Anyone else experience this?

[WilliamLFreeman]

Shelley,
I am trying to call you but your line is busy.  I think you should see a physician soon, if not ASAP.
Bill

[WilliamLFreeman]

Y'all,
I spoke with Shelley -- not so bad as I was worried it might be, probably a muscle or bone problem.
Bill

[Scott337]

Shelley,

Praying for your quick healing and the passing of the back pain.  I didn't get unmanageable back pain, but did have some on my left side.  I do however, still (11 months out), experience some of the phantom pain.  It passes quickly and reminds me of the entire experience again - so not all bad.   Heal soon friend.

Scott   

[lawphi]

I had a back pain on the left side. I used a pillow on my back to sleep, a heating pad and massage to make it feel better. 

[Fr Pat]

   One POSSIBLE cause of back pain after donation surgery is that we unconsciously change out posture (walking, standing, sitting, etc.) trying to avoid pains at the incision(s). Those changes in posture put a constant strain on certain muscles that are not used to being constantly used in that way or at that angle. So gentle bending/stretching exercises, and consciously trying to resume our normal posture, might provide some relief.
     Please let us know how it goes.
         Fr. Pat

[shelley]

The back pain is much less since I last posted.  The heating pad helped a lot.  I think it was either gas pain, or maybe because the surgeon had to move my intestines during the surgery cause they were in front of the spleen and are supposed to be behind it.

Still struggling with nausea but i'm thinking when the antibiotics get used up (5 more days) I'll feel better.  The UTI makes me nauseous and the pills to cure the UTI also make me nauseous.  No bowel movement in 5 days but I figure that's because I'm not putting much food in.

[lawphi]

I am a UTI queen.  I always take antibiotics with yogurt.  It just seems to sit on the stomach far better.  I am a huge fan of prunes for digestion issues.  I actually think prunes are great to take to ease an upset stomach.