10 Things Kidney/Pancreas Transplantees Should Know (But no one tells You)
I started this journey alone and without information. I never want anyone to experience this without help and support. To that end, here is my list of things you should know, but probably don't...
1. Do not expect your dialysis staff to educate you about transplant and life beyond.
I was surprised that my dialysis folks shared almost nothing about post-transplant experience. It's not because they are lacking, simply that they are experts in their field and not the correct resource to turn to. I had a wonderful, intelligent, resourceful and genuine dialysis nurse(Thank you, Frida!), but she could literally give me no help in regards to what to expect with transplant and life afterwards. Find a support group online, in person, read a blog, ask questions of people who've done this before. If you're reading this now, send anyone you know the link to my blog. Contact me directly, I will answer. I don't want anyone going through this with unanswered questions like I did.
2. Get a care partner NOW.
You need a care partner, spouse, friend, sibling, adult child, SOMEONE to go with you, to be available, to help you interpret, take notes and be your second set of eyes and ears, especially when you are not feeling well and are talking about drug changes and side effects. It is possible without one (I did not have one), but I recommend identifying one now and having a back up.3. Prepare yourself and your children; this is a ROUGH ride.
A. Consider sending kids to Grandma's for your surgery and hospitalization. You will be unavailable for at least a week in the hospital. For the first couple weeks when you go home, resting, taking medicine, going to clinic and sleeping will literally fill your whole day.
B. If this is your plan, practice, practice, practice. Have the kids spend weekends here and there with Grandma. Make it a fun excursion, get them looking forward to it.
C. Prepare your children's teachers, bus drivers, day care providers, friends' moms, etc. Make sure they've got Grandma's phone number, that they're ready to help your child when you're gone and that they'll go the extra mile when your family needs it most.
D. Let your kids know you'll need time to get better, just like when they get sick; they have to stay in bed and you take care of them. Assure them that you'll be in bed getting better and you'll have lots of people to take care of you. Give them a job to help with while you're gone so they can contribute.
E. Have a plan for communicating with your children while you are in the hospital recovering. Kids will not be allowed to visit, so find a way to Skype or call, exchange cards back and forth each day. This is as good for you as it is for them.
F. If you've always been a hero to your children, believe it or not, this is the greatest opportunity to continue that example. Heroes persevere in the face of challenges, heroes are vulnerable and strong, heroes are positive role models. You will be all of these things. Your children will see you physically weak and emotionally strong. They will witness the strength of your soul despite a challenging journey. Remember who's watching as you bend but don't break. Your children will see, because of you, that it does not matter how many times they fall, it only matters how many times they get up.
4. Prepare your home BEFORE you go.
A. Have lots of pillows at your disposal. In the hospital, you will always be propped up on their "state of the art" beds. Your abdomen will be in shock the first time you lay flat in what you expect to be your comfy bed.
B. Invest in a heating pad for soreness. They will move around all of your internal organs to make room for the newcomers. These organs are NOT designed to be touched, ever ... so, in addition to your grafts and scar, your back and starter kidneys will be sore. I rotated 20 minutes on, 20 minutes off for over 2 weeks.
C. Stock your pantry with soup, bland foods and lots of water. You will need to ease your stomach back in to real food. Take your time. Your digestive system will be out of whack. There will be constipation and diarrhea. Find out from your doctor before leaving how to counter these. (I also had to stock up on salt-laden foods as, post-transplant, my über-high blood pressure dropped and I have difficulty keeping it high enough now.)
5. Stuff to pack in your hospital bag.
First, a disclaimer: This is NOT a complete list, just the stuff nobody told me about ...A. Waterless shampoo, conditioner, wide toothed comb, pony tail holder.... You will be in bed for a week and you will be too tired to brush your hair (I didn't have the strength to lift my arms) and unable to shower. I literally had to cut the knots out of my hair post-discharge.
B. iPad, phone, charger, etc. ... A week in the hospital is a long time. Be sure you're technologically prepared.
C. Hard candy and gum.... For the first couple days after surgery, you cannot eat, but you will be incredibly nauseous. Your stomach will lurch uncontrollably, constantly and painfully, you will both vomit and dry heave. Chewing gum or sucking on hard candy can relieve this some. Don't make the mistake I made ... you've probably been diabetic for a long time, get the sugar-free gum and candy to keep your taste buds from going into shock. You'll have plenty of time in the future to experiment with sugar.
6. Memorialize your journey, even if it's just for you.
Take pictures, from Day 1, even before transplant. As hard as this is to believe, you will WANT to remember and see your improvement. Take pics of your face, take pics of your scar. You will look scary for the first couple days, sporting an NG tube and really drugged up. Your whole body will swell. You will likely leave the hospital weighing more than you started. (It's added weight from everything you've been flooded with, and it's necessary. It will come off as your body normalizes.)You will be impressed at your body. Your scar, which will start as scary and horrid, will become a part of you, something you'll take pride in, a badge of honor evidencing your struggle and triumph. You will eventually see the inherent beauty in the gift of your scar.
7. Doctors and Surgeons and Communication in the Hospital
A. Sense of urgency.... First, when you get The Call, you will be told to come IMMEDIATELY. This is serious and you should, but please be ready for the hospital, the nurses, the surgeons, the residents and everyone else you run into to take their time. Waiting in a hospital bed for transplant surgery is painstakingly slow. I arrived at 5 a.m. ... my surgery was ultimately not started until 1 p.m.
B. Doctor Time vs Real-people Time.... I recommend doubling, maybe tripling, a doctor's estimate of time. My surgeon once told me I'd be admitted immediately and three hours later it came to fruition. He also told me a transfusion takes a couple hours. I have yet to complete one, start to finish, in less than 6 hours, not including time for admission and discharge. They mean well, but real-people time and doctor time are not equivalent.
C. Residents vs. surgeons.... This is very frustrating. Agreeable residents and well-meaning med students are much more readily available than your surgeon. You will only see your surgeon once a day, at morning rounds, and it is difficult to get all your questions ready and answered in this short period. Write your questions down, take notes when your surgeon is there. Residents may answer your questions when the surgeon is not around, but in my experience, their answers not only don't match, but are often directly contradictory to, the surgeon's ... and the surgeon makes ALL the decisions.
Doctors write prescriptions and they are done. Getting Medicare to cover them can be challenging. Certain post-transplant medications (ie Prograf, cellcept, prednisone and mepron) are only covered under part B, not part D. These drugs will require copays and additional doctor approvals that you cannot take care of ...you need help from your nurse. This back-and-forth can take a while. Be prepared, ask your nurse what the workaround is while you wait for approvals, or be ready to pay out of pocket up front. Just remember, Medicare/Medicaid will probably never reimburse you for anything you pay for up front. Also, it always seemed like I was being discharged on a Sunday evening, when pharmacies are closed or can't fill your scrip until the next day. Do NOT leave the hospital on a Sunday without the meds in hand that you need to take that evening and Monday morning (or have a workaround approved by your doctor in place).
9.. Some type of Rejection is practically guaranteed ...Ugh.
You will probably have multiple bouts of rejection and it will probably be ok. Thus far (I am 4 months out, I have had 3). I understood I would be treated if rejection became an issue. No one told me treatment for rejection required week-long hospital stays, steroid treatments with stressful side effects and a guess-and-check/wait-and-see methodology that is painstaking and unnerving. You will get through, but fending off your immune system is a necessary, very time-consuming task.10. Transplantation is a lifelong commitment (This is not news, but bears repeating …)
A. Be your own best advocate. Learn to read your lab results. Drill your nurse and doctors for info. You are your best, and, sometimes only, advocate. They see oodles of patients and all the paperwork looks the same. If you don't get it, ask. And research. And email. And document. And be sure they know you want to be in the know.
B. Immunosuppression is forever. You will be immunosuppressed to save your grafts for the rest of your life. You will require frequent blood draws and constant medication adjusting and lots of side effects in this journey. You will never be able to sit back and ignore the drugs in your system. It is frustrating and scary, but worth it. Be patient, be flexible and give yourself time because, now, you are blessed to have so much more of it than you probably ever planned.