Tips!

Here you’ll find tips, tricks, hacks, and advice that we wish we’d known before, during, and after surgery! We’ve been through it and we’ve talked with lots of people who’ve also been through it. This is a collections of things we’ve learned. ALWAYS be sure to ask your medical team about any of these BEFORE trying them to ensure that they are safe for you. Everyone is an individual with unique needs and what may be okay for one person, may not be for another. So, again, please talk to your medical team FIRST!

Pregnancy belly bands – (yes, even if you’re not pregnant). Post-transplant, these devices help ease discomfort/pain, swelling, and promote healing. They’re especially useful when you cough or sneeze (ouch!) as your severed abdominal muscles and nerves heal.

Pregnancy pillows – These pillows are useful when you sleep or lay down to ease discomfort/pain. They come in different shapes and sizes. My favorite one was a small wedge-type pillow, but some people prefer the full body ones. Find the one that’s best for you. It doesn’t have to be the most expensive one to work. Mine cost around $20, but some run into the hundreds of dollars.

Tylenol/ibuprofen PMAsk your medical team first! You’ll likely be on pain medication and if you’re a transplant recipient, you’ll be on anti-rejection medication that will make it harder to fall and stay asleep (especially in the beginning). Taking Tylenol/ibuprofen PM instead of your regular dose of pain meds at night will likely help you sleep better or longer. Again, ask your doctor first before adding ANY medication or supplement to your routine. It can be dangerous or react negatively with your prescribed medications!

Grabber/reach extender – You won’t be able to bend over for a few weeks post-surgery, so having a mechanical gripper is useful. Your caregiver will be there to help you, but if you don’t want to ask them to pick up every little thing you drop (and you will be clumsier than normal at first), having one of these can help.

Gowns – Your abdomen might be too sore to wear regular pants, so wearing loose-fitting gowns while healing can help. There are many styles, materials, and sizes available online. Find one that works for you.

Easy slip-on shoes – You won’t be able to bend at the waist very far post-surgery so having easy slip-on shoes and slippers is worth it. Be sure to find ones that fit comfortably and have a good grip (you don’t want to slip)! A lot of people hate Crocs, but I loved wearing my fleece-lined ones because they were so lightweight and easy to slip on/off.

Showering – If your incision sites sting when you shower, invest in some plastic covering (name brand: Tegaderm). This helps keep your wounds dry and protected while you shower and help to minimize pain. Be careful not to let the sticky part touch your incision site directly! I put a non-woven sterile pad over that part and then covered it with a plastic shower shield.

Numbness – This one freaked me out at first because I wasn’t expecting it! The skin directly over your new kidney will probably feel weirdly numb compared to the rest of your abdomen. Talk with your doctor, of course, but in my case it was just numbness because the nerves had been severed during the surgery. They will likely grow back, but it may take time.

Stent Always ask your medical team about any new, worsening, or unusual pain! Some of you may have a temporary stent put in. Mine ran from my new kidney through my ureter into my bladder. It was there for over a month, and I was surprised by how much it hurt! If your doctor says that the discomfort is due to the stent, there is not much you can do. Just be mindful of the level of pain and report anything that gets worse or feels unusual immediately. For me, a warming pad on the lowest setting helped, as well as the pregnancy belly band. Don’t worry; it’s not forever. Also, don’t be freaked out by the length of the stent when they remove it! I was!

Swelling/edemaTalk to your medical team about this! In my case, it scared me because my new kidney started working immediately so I didn’t understand why I was retaining over 25 pounds of fluid post-surgery! It felt like before I went on dialysis and swelled up by almost 1/4 of my body weight! Over the next 2-3 weeks, the swelling subsided. Some of the medication may cause edema (especially in the feet and legs). I choose to wear light compression hose or socks to help with that on days I feel particularly swollen. Again, ask your medical team about this.

Massage Ask your medical team first if this is safe for you! Depending on how you feel, a light lower back or shoulder massage can help relieve the pain. Many of the post-transplant medications make your muscles sore/achy so massage can help. Not only that, but it can stimulate blood flow, trick your nerves (i.e. relieve pain), and promote healing. You can either ask your caregiver or buy an electric back massager (I myself like the shiatsu ones on a light setting).

ExerciseAsk your medical team first before doing anything to make sure it is safe for you! Moving your body is so important post-surgery (both recipients and donors). It promotes healing, prevents infections, and improves your mood. Light walking is usually best. When you’re strong enough and have been cleared by your medical team, going outside is nice. The fresh air and daylight may help your circadian rhythm and might make it easier to sleep at night. Be sure to wear high SPF sunscreen, a hat, and sunglasses if you’re a recipient because the medication you’re now on makes you much more susceptible to skin cancer (even if you have high pigmentation). And you should probably listen to your body! Discomfort is likely going to be there, but pain is usually a sign to take it down a notch. Try not to overdo anything. Baby steps. You’ll get there. And the hope is that you’ll be even stronger and healthier than before your transplant!

If you have any tips or experiences of your own you’d like to share, please post them in the OK Community page.