Hi Everyone!
I am happy to announce that I will be receiving a kidney transplant on July 29th thanks to an amazing living donor. Just confirmed today! I wanted to ask two questions:
1) What should I remember to bring for my hospital stay to make it more comfortable?
2) What are things you wish you knew in terms of recovery?
Thanks!
D
I had a pretty routine stay and recovery and nothing really to note except the bombardment of nurses, lights, vital sign taking, but that's pretty typical with any surgery. That said, I like to take self-care items...my own robe, a few basic toiletries, like deodorant, hair brush, maybe face cleaner pack. I always bring a small vial of essential oil and dab on a cotton ball somewhere in my room. Lavender is calming, lemon verbena can lift your spirits, etc. (The nurses love it!) Or a small fragrant candle (not to be lit, ha!) It's just a little way to make things a little less stressful. And...you'll be a back sleeper for awhile, but you get used to it! Best of luck and congratulations! How exciting!
Thank you! Anything to know about the medication side effects once you get home? What was the worst part to cope with?
You will have follow-ups with your nephrologist for quite awhile to adjust, re-adjust, increase, decrease meds to balance them out. Everyone is different. You will just have to be your own advocate, don't hesitate to ask him/her questions, stick to your appointments, stay as healthy as possible due to the immunosuppressants. You don't have to live a sterile life, you'll just have to be especially careful during flu season, etc. as we're more susceptible. Eat well, practice self-care. And there are a lot of internet sites like the kidney association, etc., that has a lot of info for post-transplant patients. Trust me, if you have a question it's been asked!
After my transplant, on one of my hall walks, I noticed several treadmills in an alcove. I was told that patients could use them if they were up to it and used moderation. I felt so great and I was accustomed to treadmill use every day pre transplant. So, I proceeded to put on the shoes I’d wore into the hospital and was soon told I needed sneakers (tennis shoes) to use the treadmill. Wish I’d brought them.
Sara Eads
That's great news,
It was the small things for me that helped make the stay more comfortable. A small electric fan; especially in this warm weather and wet wipes to freshen up with.
Drink plenty of water after your transplant and do get up and about as soon as they let you. A regular walk up and down the ward gets your body moving again and helps aid a speedy recovery. Its also a good chance to chat with other patients. Something to read or watch that doesn't take too much brain power at first. My favourites were quizzes. Dont forget your earphones!
Get used to organising your own meds as soon as you can too. Also have any questions you have ready for when the doctors do their round each day; I found they were helpful but very busy and only had a short time for each patient. If you have any side effects from the meds, mention them as soon as you can. They are good at tweaking your doses to help individualize your prescription.
I started up a WhatsApp group too so I could update friends and family together. It was useful not to have to say the same thing to each person, or to miss anyone out. They also used it to organise their visits so they didn't all come at once.
Feeling great now, wishing you the same.
Good luck with your opp.
Best wishes,
Mgt
Congrats! You will be interrupted often nurses, Dr’s, staff, etc. I did not have any pain, but make sure you get up and walk after surgery. It’s to prevent blood clots and I remember i had to blow into this contraption to keep the lungs healthy. Remember to order your meals and eat! My son took care of me for two weeks after the transplant. I felt weak but each day your strength gets better.
Great news Danielle! I’m scheduled for my surgery this Tuesday so I’m going to follow this post also.
Good luck!!
Thanks. You too!
You may want have plenty of Purcell for yourself and people who come to visit. Ask for or buy surgical masks for your first month or so especially when returning to the clinic for blood work and follow up visits to the doctor. Plan to sleep a lot when you return home.
Bring very loose clothing such as sweats You won't be able to wear anything with a waistband - but you'll feel great!
I would not leave my favorite pillow. Follow all the instructions of your doctors the rest leave it to God. You will see that everything will be fine, God bless you 🙏🏼
Regardless of your politics, I just read a few days ago that President Trump by executive order has increased funds for kidney patient education, dialysis and transplants. Good news!
Congratulations. You are lucky to have a live donor.
From what you have been through with your kidney
failing you will find the transplant such a blessing.
Keep positive thoughts. God Bless.
Congratulations on your upcoming transplant! As others have said bring loose clothing. I brought sweats and t-shirts along with my tennis shoes. Despite a Foley catheter and an IV they have you get dressed and start you walking right away.
When you get home, make sure your drink plenty of water everyday. After the first couple of weeks I started having GI problems and shaking. This was all from my body getting used to the immunosuppressants. Any symptoms you experience make sure you tell your transplant center team. They were able to reduce my dose of these drugs and all was better.
For years you had to be concerned about your health and now it WILL BE time to ENJOY LIFE. A transplant is a true GIFT OF LIFE! I am living well 19+ years post transplant.
Best if luck to you. Let us know how things go. Prayers.
Congratulations!!!! Just take one day at a time. Most important thing get up and walk as soon as possible and walk, walk walk! Also bring loose fitting clothes, something easy to slip on (not over your head). Bring some entertainment, books, magazines, cards, tablet. My last transplant ( 1 1/2 year ago) I had no pain but everyone is different. First few months will be loads of meds and they will change often until they (Doctors) work out what is best for you and as someone stated earlier pay attention to your body and tell your doctors how you feel with your meds (especially) and just in general. You may gain a few pounds I know I did, lol. Simply because I could eat all the things I could not while on dialysis. So try and not go overboard. Once you get home you may feel a little tired but still try and walk everyday along with tons of water. DON'T MISS ANNY MEDS!! Also wear your mask when you are allowed to go outside and just watch who you are around, making sure they are not sick, etc. Lastly enjoy your new life and gift. Breathe and relax. Thank God you found a living donor. I'm very happy and excited for you. Praying for you and your donor. Blessings
I would take comfort items, a blanket, pillow etc in terms of recovery just dont rush yourself its a major op. Good luck xxx
I had to stay in the Picu for a whole week and then some for rejection(hoping that doesn’t happen) bring some things from home. I brought my nintendo switch w/ games, phone, headphones and my own pillow. It worked but you’ll want to try(don’t force yourself and get out of bed and slowly walk around within 4-5 days. Avoid overly crowded places/areas for 3 months and labs will be twice a week then it will space out.
Oh btw you will feel very bloated because they have to pump your stomach up with a bunch of air. That will dissipate very slowly but it will go away. And there will be a drain, it a plastic bottle that allows excess fluids to “drain” out of your body. After the fluids stop draining they will pull it. I was scared about having that removed but it didn’t hurt a bit, just felt VERY weird
Hi Danielle, as a long time cadaver kidney transplant recipient, I want to start by saying, "Cheers and Blessings." Good luck on your surgery.
Follow your Nephrologist's advice/suggestions.
ALWAYZ keep in mind that what worked for some patients might NOT WORK for YOU!!
I sincerely wish you a great healthy life.
Thank you all for the well wishes and wonderful advice. This really helps. I will be sure to keep you updated on how things go.
I had my transplant 3 months ago and the medication is giving me a lot of side effects. The medications cause weight gain, increase blood pressure, increase your cholesterol levels, causes nerve pain in parts of the body, make you feel confused and dizzy, cause muscle pain. I have all these problems. I wish my doctor told all these things before the surgery. You need to know the pros and cons before making a life changing decision. I hope this make you think and make wise decision. Good luck, hope things workout for you.
GI issues post transplant
Post Transplant dietitian needed
Following up after transplant 
Transplant Meds- Anti-rejection 
