Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: PaulaHalvo on January 28, 2012, 11:05:02 AM
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Hi. I am donating Feb.14. I have read several accounts and have some questions.
1.) What should I take with me? I am driving 4.5 hours to Cleveland for my surgery. If I'm going to want it in the hospital, I need to bring it with me, there won't be any trips home to get what I forgot.
2.) Did you feel you needed someone with you while you were in the hospital?
3.) What did you feel up to doing for the first week home? Could you concentrate? Were you able to work on small projects? Did you just want to sleep? How about in the following weeks?
4.) We have a wedding we would like to go to March 3. It will involve a two hour drive to the airport, a flight to Chicago (non-stop) and one night in a hotel. Is that a reasonable possibility?
5.) What have you found for pain management post surgery? I have joint pain and headaches. Tylenol isn't terribly effective. Any good substitutes for NSAIDS?
6.) I know everyone is different, but how long was it until you felt 100%?
7.) Has anyone had a ceasarean? How did this surgery compare to that?
Thank you for taking time to read this and answer the questions!
Blessings,
Paula
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Hi Paula! Congratulations and best wishes. Here is my take on your questions.
1. Take your own pillow, very comfy pj's and some stretchy pants, like yoga pants or sweats to wear for a week or two afterwards. That's a long drive and I don't think you'll want to do it right after discharge. I recommend staying with a friend or in a hotel until you're at least a week post-op if that's possible. There are a bunch of good suggestions here on the site. Headphones or earplugs for the hospital, even in post-op. I like to bring a box of candy for the nurses and hospital staff to have in my room. They like to come to your room when they know there's candy.
2. Yes yes and yes. You need an advocate. Have someone with you whenever possible to call nurses and let people know you aren't getting what you need fast enough.
3. I stopped taking the narcotics three days post-op and tried to use plain tylenol only. For me, it worked. I was able to sleep fairly normally, and read and watch TV. I even took a couple of short car trips to a local mall and to have lunch one day. You get fatigued very quickly so don't go far.
4. I flew home two weeks post-op. It was a four hour trip, and about a half hour to the airport. I was OK. Let your surgeon know. He told me to take an aspirin the day before, and one the day of the flight, to thin my blood and I wore compression stockings. Call the frequent flyer program and tell them you're a kidney donor who has to make a trip soon after surgery. They credited me enough frequent flyer miles to go first class so I'd have leg room and be able to stretch. At the least they can put you in the front row of coach so you can stretch. Leave yourself LOTS of time to rest between activities. I think you can do it, but it depends on your recovery up to that point. You will be fatigued!
5. Tylenol is it from here on out. The others are hard on your kidneys. The docs say you can use the others once in a while for severe pain but you should take this into consideration.
6. A few months before the fatigue was really completely gone. But I felt pretty normal after three weeks.
7. I did not but I've heard it's similar for recovery, without the crying infant. :-)
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Don't forget extra-large shoes as well as clothing, for comfort if/when there is post-op bloating.
Fr. Pat
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In regards to #2, your mind might be a little foggy after the surgery, so it helps to have someone with a clear head to talk to the doctors.
Traveling shouldn't be a problem for you a few weeks after the surgery, but have someone else lift your luggage for you. You don't want to get a hernia lifting something heavy.
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Thank you for taking the time to answer! I need to start putting things together to take to the hospital. This has all happened so fast. They told me it could take months to find matches. I told my neighbor I would be tested in October and started the process in November, I was cleared for donation in December and had a domino match within an hour or two of being entered into the national registry. When they mixed all our blood there was a glitch, but within a week or two they had a new eight way match (sixteen people) that all worked. It all happened so fast, I feel like I'm in shock. And because we are fairly new to this community, and I will be having the surgery in another state, I feel very alone. Again, thank you for your answers. I am hungry for information.
Blessings,
Paula
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Dear Paula,
You might also ask the transplant coordinator at the hospital where the donation will take place if there might be a past donor there who would be willing to serve as a "buddy" for you there? Often there are past donors who would love to help a new-comer through the process, and knows the details of that hospital. Wouldn't hurt to ask, just in case.
Fr. Pat
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To add to these great suggestions...the most important thing I had with me with a light-weight bathrobe, The hospital gowns are a little skimpy and I was walking the halls like a crazy person. It was nice to have something to cover my bum! My sister (recipient) didn't have one and I was constantly having to keep a watch that she didn't expose herself! Ear plus were also key. At night, especially during shift change it gets loud in the hallway and it was nice to be able to zone out the noise and sleep when I wanted to.
Good luck!
Julie
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Take a heating pad and prunes.
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Hi, Paula.
To add to everyone else's good post-surgery suggestions:
1)Try to avoid sneezing. Press your finger horizontally on your upper lip, up against your nose. Effective if used in time!
2)Think very carefully before you sleep on the side on which your surgery was performed. Trust me on this....
3)Try to practice how you'll get out of bed, in the first day or two after surgery. This seems to be a real hurdle for many of us.
Good luck!!!
Be well,
Snoopy
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I am coning up on my two years. i donated my kidney to my dad on Feb 9th in 2010. i will share what info I have.
1.)i was also about 5 hours from home when I donated. I was nervous and my way of dealing was to be hyper prepared. I brought so much more than I could possibly need but the things I am happy i brought were
-chap stick, the air gets so dry
-warm fuzzy slippers
-my own fuzzy comforting blanket
-a small pillow, to hold against your incision when you sneeze or have to sit up
-big comfy clothes to wear home (sweat pants or pajama pants, a big comfy hoody)
-slippers with grippy feet. They will make you walk and you do NEED to walk so you want to make sure you have the right slippers.
-juice boxes! This one is partially just because I think it is impossible to be unhappy while drinking out of a juice box but also because they are easy to drink when laying down and not too heavy to hold.
I think those are my only absolute necessities. like I said I brought so much more, such as prunes (io was paranoid about constipation and I inaccurately thought I would be able to eat), books (no way I could read), makeup lol i guess I actually thought I would care what I looked like.
2.)I had someone there with me a lot during the days but not through the night. I would have liked someone through the night but it wasn't too awful being alone. i think you need someone there at least part of the time, or at least i did. someone definitely has to help you when you leave.
3.) i felt capable of pretty much nothing that first week. i was a little too drugged (had me on high does of dilaudid in the hospital and was the come down/withdrawal that week was difficult). i was a sore walking zombie. not everyone is this way I am sure but I was. Give yourself a break and expect nothing of yourself, you just had major surgery.
4.) I don;t think i would have gone to a wedding 2 weeks after surgery, unless it was my very best friend or sister perhaps. if you must, have good pain killers and expect to be extremely tired the whole time. I found I was prepared for the pain but the tiredness was actually much harder for me. walking for any amount of time would be very hard at 2 weeks. its just so hard to know what you will feel like.
5.) unfortunately no. Tylenol doesn't work well for me either and there aren't really any other good options unless you get into narcotics
6.) I am not sure how long before I felt 100%. I felt about 80% or 90% after about 6 weeks but I wouldn't say i was really 100% for quite a few months. i still felt a little pulling around my incision if I walked a lot (hours of shopping or something) after 6 months, maybe even a year. i ran a lot recently and i actually felt my incision for the first time in quite a while. Not pain exactly, just felt it.
I have never had a c-section so I can't comment on that.
my other thoughts- be kind to yourself through it all, be patient with your body. It is a big surgery and you need to give yourself that time.
I was told about depression post donation and never thought it would apply to me but it did. i think it is a combination of feeling so tired and rough as well as the big excitement leading up to it being over. I am not entirely sure why but it is common. if you do experience it, come on this site and talk to to people. do whatever you need to get through it. For me, knowing it was a thing people often go through after transplant helped me and I just felt better as time went on and I got stronger again.
This is an amazing experience and I think we are all so blessed to be a part of such an incredible act! you will now be part of an exclusive club, be proud of what you have done!
Thank you for taking time to read this and answer the questions!
good luck!
Ebony
donated left kidney to dad feb.9, 2010
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"impossible to be unhappy while drinking out of a juice box"
That's adorable! And true!! Good advice.
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haha thanks!
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You've gotten lots of good advice already, but I wanted to comment on one point: meds for headaches.
Obviously this depends on what sort of headaches you get, but mine have always reacted pretty well to Extra Strength Excedrin (in generic form), which is a no-no after donation because it contains aspirin. The other 2 active ingredients are acetaminophen and caffeine, so I experimented with taking 2 Tylenol (or generic) and a caffeine pill. This works! Some of the time anyway; you know how headaches are. I found caffeine pills that are double the dose of what's in 2 Excedrins, so I cut them in half.
I also have a prescription for Imitrex, which is not nephro-toxic, and works on my more severe headaches.
Best wishes,
Kara
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Well, I'm packing today to leave for Cleveland Clinic tomorrow. Thanks to all of you for suggestions on what to take. I'm very appreciative and will check my list twice! Think of me on Valentine's Day and if you believe in prayer, I'd love your prayers. Paula
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Best of luck! Let us know how it goes!
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Just wanted to let you know I am thinking of you today on your donation day. I hope everything went well. Take it easy the next few weeks. Welcome to the Club!
Angelica
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Praying all went well and you are beginning to feel human again! The first few days were hard on me and switching over to oral pain meds from the morphine pump was very interesting....I was quite loopy and that might be putting it mildly. But by day 4 I was beginning to feel somewhat normal again. Praying you are feeling good and are able to get up and walk to help the recovery get going.
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Hope everything went well! Be great to hear an update
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I've done great with my recovery as far as pain and movement go. My big problem is appetite. I know others have mentioned this. I've been trying to find threads about it. I can't eat more than about a quarter of a cup of food at a meal. I've lost ten pounds. Don't mind the weight loss, just would like to feel better. This is not like me at all. I'm the only person I know who gained weight when I had cancer. So this really has taken me by surprise. How common is this? I'm not on the pain meds so it's not that. I have so much to be thankful for,I'm not complaining. Just wonder if anyone has any insight. Thanks.
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Paula,
First of all welcome to the club! I had the same issue with food after surgery and I am one never to lose my appetite. It took about 3 weeks for me to get my appetite back. I just felt full all the time and not hungry.I knew I needed to eat so I would eat very little bits at a time and also light food. My throat got a little irritated from dry food or something that was hard to chew, maybe because of the intubation. I coughed a lot the first ten days which killed my abdomen so I would hold a pillow there for support. I also lost weight and loved the number on the scale; a number I have not seen since and probably won't see till I reach old age and am a frail old woman! Most important make sure to drink. If you really feel like you need more nutrition you can try one of the Ensure types of drinks but you are probably ok to eat small portions and not worry about the eating. As long as you are feeling well, not having nausea, vomiting or diarrhea you should be ok. Some bowels take more time than others to move back into their routine. My body was certainly shocked.
Take care and best wishes for a full and speedy recovery,
Sherri
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Thanks Sherri. I'll probably wish these days were back, once they are gone. I had worked hard to lose fifty pounds during 2011. It's so strange to see ten pounds just slide off like this!
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Yeah, I had no appetite either, for the first week or two. It gradually came back and now, three weeks later, it's right where it was.
I lost about 8 lbs. :) That was a nice, unexpected benefit!
My recipient lost 24 lbs, but that was all kidney in his case. :o
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Congratulations on your successful surgery, it feels good to be on the other side, doesn't it?!? I was very nauseous for 2 weeks - not just no appetite, but I felt very ill. I too had gone off the pain meds quickly. It turned out my body was not reabsorbing the CO2 like it should and the air was causing me to feel sick. On day 15 I actually felt hungry for the first time. I had a mini appetite for another couple weeks, it would have been nice if that stuck around! I lost 14 pounds...yes, nice bonus but when it is too much too soon it never stays off (gained about 9 back so still got a 5 pound bonus.)
If you have nausea that is causing a lot of discomfort ask for some meds. They gave me Zofran and it did help a little.
Good luck with recovery - take good care of yourself!
Julie
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Congratulations on your donation and recovery. I donated on February 2 and still don't have a good appetite. My belly still seems bloated so smaller more frequent meals work for me. I rarely get "hungry" for something in particular, but am very fortunate that my husband has been a wonderful cook and caregiver tempting me with different foods I like. My doctor said to eat whatever I wanted and not to worry about the appetite. Just remember to go slow and not push yourself too hard. Good Luck!