One week after surgery update!

[Prelude_Sarah]

Hello everyone Sorry I didn't post right away after the surgery, but it has been a crazy time!
As most of you know, I donated (wow! first time saying it in past-tense here!) my left kidney to my younger sister a week ago, on Tuesday May 10th.

The transplant was a complete success.  The kidney started working immediately!  The next morning, my sister's creatinine dropped from 4 or 5 point something to .80!!!!  Amazing!!!  And my creatinine post-surgery was 1.19 (coming up from .75)...so, not too shabby either.

My sister and I shared a hospital room; this was a good idea in ways, and a bad idea in some regards.  I found myself constantly worrying about her when she didn't feel well, which I'm sure didn't help my own healing process.  And I know she worried about me a lot too, sometimes feeling guilty for the pain I was in.  And we stepped on each others toes a few times, like when I wanted the light off but she was still reading or vice versa...etc.
The real tough time was when we learned that she could go home finally, but I could not.  She had already been having bowel movements and urinating a lot, and tolerating solid foods, but I wasn't, this was day four.  Even though my sister had been in the hospital for days and was anxious to go home, she had a very hard time leaving me in the hospital.  We shed some tears, and she was taken home to rest.  I was moved to a new, much nicer room...thanks to my mom's persuasion

I wasn't really eating much in the hospital because I had no appetite all of a sudden.  Secretly, I was just so afraid that I might vomit, that I didn't really allow myself to try to eat much...couldn't risk throwing up.  My incisions were so painful, that the thought of throwing up was very scary to me.
This not eating thing turned into a bad pattern though, because by day 4 I had still only eaten half a jello, and two saltine crackers.


My recovery has been going fairly well, with a few hiccups.  The first day or two was pretty tough in the hospital.  I was released after 4 nights and the better part of one day.  Then, the first day or two at home went GREAT and I was thinking "WOW!  I'm going to feel great in NO time!"  But ever since yesterday, the pain has increased for some reason.  My incisions are sore, but healing well.  But I've noticed some deep bruising pain on my right side, by my belly button.  The doctors tell me this is because they cut through muscle there, so it's naturally going to be very sore.  But, the pain is not my real concern.

My real concern is this...and it's a little embarrassing...I have only had one bowel movement since the surgery, and that was forced on by a suppository on Saturday, the day I was discharged.
Since then, I have hardly even been passing gas.  Admittedly, I am not eating much, but I think I am eating enough to produce some kind of waste.  I am taking Colace every morning, as prescribed by the doctors.  I'm sipping on prune juice, and snacking on craisins.  I'm also drinking tons of water and walking a fair amount every day...but still no bowel movement   I just started drinking milk of magnesia tonight, and am praying that it works fast.

At this point I'm starting to feel really bloated and sick, but most of all scared.  Did anyone else experience this kind of constipation as far as 1 week out of surgery?  I understand that the pain medications may contribute to constipation...but shouldn't it be balanced out by all the efforts I'm making to get my bowels moving?

The other concerns...a very small rash I have on my chest, just under my breasts, that leads around to my back.  The other thing is the pain meds I'm on make me really itchy, like all pain killers do to me, unfortunately.  Because this is my typical reaction to pain killers, the doctors didn't seem too awfully concerned.  Also, my face is incredibly dry and splotchy...almost scaly in spots, it was very very soft prior to surgery...I started an aveeno lotion regimine today...I know it's vain, but I hope that's not permanent. 
They've been having me couple my pain meds with benadryl, it helps the itching just a little.  The doctors didn't seem concerned about the rash when I saw them today for my first follow up, but I've been told to call right away if it gets worse.  A pharmacist actually took a look at the rash (which is not painful), and said that in her opinion it looks like a "heat rash".  This would make sense, as I've been using a heating pad religiously to help ease the abdominal pain.  I'm wondering if it's also possible that the rash is a result of me scratching myself in my sleep...?
I've been able to stay really positive about everything, despite a few minor issues in my recovery.  But today, I've found myself freaked out about it all.  I just want to have a bowel movement now, more than anything.  I'm 26, I have never been concerned with such things...it's so strange.  I will never again take my basic bodily functions for granted.  And again, I'm sorry for discussing such graphic things here.
Can anyone give me any advice if you've experienced these side effects after donating a kidney? 

In general, this whole experience has been much easier than what I was picturing...I find myself so overwhelmed with gratitude for the success of it, and for the opportunity to do something so amazing.  I can't even express adequately the joy I feel when I see my sister now.  She is eating, laughing and returning to normal very fast.  She still has a long road of recovery ahead of her too, but she's already doing so great.
Prior to surgery, there was so much fear.  I'm a little worried about myself right now, but more than anything I am filled with gratitude that I was able to make this decision, and follow through with it.  There were times that I seriously wondered whether or not I could actually go through with it. 

When it came down to the morning of surgery, my sister was sick.  She was vomiting and looked awful.  When I saw her like that the morning of our surgery, all the fear I had for myself melted away suddenly, and I knew in my heart, 100%, that I had made the right decision.  In that moment, I was only concerned with my sister, and found myself completely ready to give her my kidney, to stop her agony.  I look back at the struggle I went through to get to this point, and am overwhelmed by gratitude that somehow I found the strength to go through with it.  If I had been born with three kidneys, I would do it again in a heart beat.  This feeling of love and satisfaction I have when I see my sister doing well runs so deep, it is so beautiful.

Thank you all for being with me every step of this amazing journey, I am proud to officially be a part of your "club"

Most Sincerely,

Sarah

[sherri]

Sarah,

Let me be one of the first to say, Welcome to the Club!

You sound great mentally, that mix of emotions of being happy for your recipient sister and concerned about your healing. Keep being happy for your sister, who I am sure has a great medical team watching her healing process. Now you need to focus on your healing and make sure the medical team pays as much attention to you.

 The bowel issues are common. I also stayed in the hospital for 4 days because I wouldn't go home until I saw everything return to normal.They didn't care one way or the other if I stayed or went home.  I didn't want to have to go back after I had left. Bowel issues seem to be the most common. Sounds like you are doing all the right things to increase your chances of your system returning to normal. Coffee is always a big stimulant for me, dried fruits, yogurt and things like that. Have you tried cutting back on the pain pills or taking Tylenol instead? I also used the heating pad and warm showers to help with the pain from the incision. I would call your doctor or nurse coordinator and let them know what is happening. Ask them if by a certain time you do not have a bowel movement could you come in and be seen. Sometimes donors do experience and obstruction and it needs to be corrected. Or it may be that this will be slow for you.

The eating part is tough. I had lost so much weight which felt great when I stepped on the scale but I looked emaciated even though this was a "healthy" weight for me. As time goes on you will be able to eat a little more. Keep doing small snacks and meals every few hours.

Sarah, I'm so proud of you. You did it. Wow! It will be even better to be on the other side once you feel more "human". Take care and keep us posted on your progress.

Sherri

[Orchidlady]

Welcome Home Sarah!  I can relate to the lack of appetite. It took a week for mine to return. I ate while in the hospital, but only because they were monitoring what I was eating and drinking - I was afraid they would not let me go home if I couldn't show I was eating.

Just be aware of your body and what is going on. Don't hesitate to call and check with someone if something doesn't feel right. You don't want to let things get out of hand if there is something they can do right away.

Walk, drink plenty of water, and may your recovery be a quick one!

[tom carr]

Sarah,

Great job! It's a great feeling to know that you have saved someone's life.

The loss of appetite is common. Mine lasted over two weeks. The good news is the weight loss; the bad news is the fear of the unknown. I've said from the time I donated (10/21/10) that hospitals need to do a better job of informing donators of the possible after effects of the surgery. Not that one wants to scare the heck out of anyone, but the patient should be aware of what to expect when the operation is done. I had several issues that caused me concern. Not that any one of them was unbearable but taken together they did raise some concern. Had I been told beforehand that these are some "normal" side effects of surgery, then I would have handled it better.

Anyway, feel better. You will improve quicker than you thought possible. And, like you, if I had another spare kidney, I would donate it in a NY minute.

Tom
Non-directed donor
Oct. 2010

[smudge]

Hi Sarah

Another welcome to the club!

What doctors never seem to tell people is that the anaesthetic works on your bowel as well and it also goes to sleep.  Add in painkillers, sudden reduction in mobility and major surgery and constipation is inevitable.

It takes a while for your bowel to fully wake up after any surgery and depending on where your incisions are (mine was a c-section) your kidney may have made its exit from your body past your bowel.  The bowel is a sensitive organ so if it's been even gently brushed in the process it may well go on strike.  Sounds like yours is particularly sensitive and you are only 1 week out.

All sounds very normal - our transplant was Wednesday morning and my first BM was Saturday morning after a lot of water, prune juice, prunes, laxatives etc.  I didn't really have a problem with appetite that I remember once I was out of hospital (Friday) but do remember being quite bloated and needed to keep on with the prune juice until I stopped taking painkillers completely (even paracetamol - think you call it tylenol in the US? - which woudln't normally cause constipation).  I do remember being quite bloated which I had put down to post-surgical inflammation but when it suddenly disappeared overnight I realised it wasn't!  But that was a good 2 weeks down the line.  You really don't want to be straining on the loo so do keep up with anything that will soften things (be they laxatives or prune juice).  Yes, ideally keeping everything natural is best but if you need to take laxatives then do.  I was prescribed both senna and lactulose and seemed to have excessive quantities of both but I'm glad I did.  I really can't remember when my next BM was, it could well have been a week post surgery.

Can't help with the rash but it does sound like a heat rash.  I never used a heat pad as it was mid-summer and really hot (by British standards) around the time of our transplant.  I was on Tramadol post surgery for a while and the itching was awful.  I think the PCA morphine that I had for the first 24 hrs post surgery was also a culprit for the itching too.  Just horrible - they wanted me to keep my surgical stockings on to reduce the risk of DVT, it was really hot and my legs were SOOO itchy.  We compromised on the stockings in the end after they gave me antihistamine (Piriton) and it made little difference.



Hope that helps and you soon feel more comfortable.  Glad to hear your sister is doing well.

[Fr Pat]

Dear Sarah,
      Congratulations to you both!
      You need to eat, so don't be shy about anything you feel any craving or appetite for, even if it's just a few bites. Indulge yourself! For some reason anchovie pizza was the only food that really appealed to me after donation, and I don't even eat it usualy!
      Do as much walking and stairs as you can, and add in as much bending and stretching as comfort allows. As noted elsewhere, the sooner you get off the pain meds the better.
     As noted, constipation is a common problem after donation. Although it usually clears up, SOME (few) donors have suffered a bowel obstruction because the intestine formed a "kink" on being moved and disturbed, or an "adhesion" between sections. So do keep an eye on it, and don't be shy about checking with the hospital if it does not clear up.
     Another tip: some folks who don't like yogurt buy the helpful bacteria in Yogurt in capsule form over-the-counter. The anti-biotics administered in connection with the surgery can accidentally kill off some of the helpful bacteria that normally live in the gut and promote good digestion.
     Please keep us informed.
              Fr. Pat

[Scott337]

Sarah,

Congratulations, what a wonderful sister you are and now you KNOW what a miracle it is that we can do something like this for others but feel so humbled and blessed to have been able to so intimately share in someone else's life and personal journey.  I'm SO happy for you and your sister both.

Good advice from all - isn't it great to have such immediate feedback from such a great group of people who have all taken a similar journey - I think you're ALL heros.

Just remember, even though all of our experiences are quite similar, each of our bodies are different and will respond as such.  I can also say, I experienced a very similar bout of constipation (painfully so) but finally my wife purchased me an herbal and all natural stool softener (SENNA LAXATIVE sennosides, 8.6 mg) we were able to find at Target.  It's a natural vegetable laxative and guarantees to work overnight and it did for me.   It's oral rather than a suppository.  Try it.

Be patient but gently push yourself to move (walk, climb stairs, bend, etc.), eat and allow your body to tell you how you're doing.   You'll also find that your positive thoughts help you deal with pain management and the recovery period boredom.  I spent some of the quiet time during the day just basically meditating and thinking about all of the positive aspects of my choices and granting myself full acceptance of whatever came next for me and my recipient.

I was able to get myself off the pain meds as soon as I returned home and found that not only did Extra-Strength Tylenol seem to work just as good, but I felt better using this rather than a narcotic AND, it kept me from having further constipation issues.

I hope you're well and continue to do so and please give our collective best of thoughts and wishes to your sister and family also.  You truly are blessed my friend.

Scott

[Aries7]

Hi Sarah!!

CONGRATULATIONS!! I am SO happy for you and SO proud of you!! You did it!! I knew you would do great. I have been watching on the board for your update post surgery. I am so glad to hear that overall things went so well.
The constipation thing is pretty normal. (and please don't be embarassed to talk about it here - we here have all been there so no worries!) I did not have to much of a problem with this. I did however, take stool softeners for a while ( I want to say maybe about 2 weeks??) after the surgery. The others have given you great advice as to things to eat/drink/try to get things moving.

It is interesting you mention a rash. I also developed a rash about a day and a half after surgery. Mine started on my abdomen and moved all the way up to the left side of my chest. They sent me home with a Prednisone pack. I ended up going through a few of those (three if I remember correctly) and then a really strong dose for 10 days before the rash finally went away. The weird thing is that my coordinator said I was the third patient in three months that had developed a rash like this. All three of us had different surgeons, etc. The only thing we had in common was that we had the same coordinator. They know it was from something they used during surgery, but don't know what. "Contact Dermatits" was all they could really tell me. Anyway, once it went away it never came back. Odds are, yours will not get that bad. Just wanted to share my rash experience with you and tell you to just keep an eye on it.
I agree with the previous advice about trying to walk as much as you can, but also be sure to rest when you feel like it. You really will heal up and feel better and be back to normal before you know it. Please continue to keep us updated as to how you and your sister are doing. I am just so happy for you! I also have to say it - "Welcome to the Club!!"
Many Hugs to You!

Linda

[Prelude_Sarah]

Thank you all so much for the advice and encouragement!!  It is so amazing to have this wonderful group of people to talk to about these things.  After reading some of your responses, I immediately felt better. 
I thought I'd let you all know...I finally have been able to relieve the constipation.  Thank goodness!!!!  My family started clapping for me when I stepped out of the restroom with a smile on my face...priceless.
My rash seems to be about the same, if not perhaps just a little better today.  My face is still very dry and irritated, but I'm so glad to know that my basic bodily functions are intact.
My sister is struggling with some pain from her incision (as am I), but she is still doing great.  I think the awesomeness of all of this is still setting in for me

All my love,

Sarah

[Jewels]

Sarah - Yay for you and your sister!  It is such a comfort to hear your story as I approach my surgery date (not until July 15 but that seems so close!)  It seems the transplant centers tend to sugar coat the reality of what the recovery is like, besides saying "the first week is rough" - You are a rock star...I am so happy for you.  Please keep the updates coming, it is beyond helpful for us "donors to be."

Wishing you all the best and a happy recovery!
Julie

[shelley]

Sarah, I just want to add my voice to all those who are high-fiving you:  Well done!  I too was watching the board anxiously for your post-surgery updates and am so glad you've had some relief from the constipation.  You're an inspiration!

I'm looking forward to hearing if/how donating part of yourself, affects your music!