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Tips for Post-Transplant Care

-Don’t be surprised if your staples get itchy, red or swollen as it gets close to time to have them removed. This is normal. However, if they really start to bother you don’t hesitate to let your team know.

-Sometimes, it is good to set a timer (especially in the middle of the night) to remember to take your pain killer. I use my cell phone. Your memory will give you a difficult time on the pain killers. Don’t let it bother you and just know it is the drugs. You don’t want to lose your pain coverage, so stay up on your drugs! Don’t overdo though, wean off as soon as you can.

-Both donors and recipients say their taste buds can be thrown off for anywhere from a week to a few months. I didn’t experience this. However, my sister and I both experience getting full really fast. If you over eat, you will likely be miserable, it pushes on everything and can cause incision pain. Eat multiple small meals throughout the day, it will help you feel a lot better. If your taste buds are thrown off, it will get better in time.

-You may experience “cell memory”. It is very common in transplants. Some of the donors favorite foods, words, quirks and/or habits may become your new favorite foods, words, quirks and habits. I experienced this with both of my donors. I have noticed myself saying new words, totally foreign to me, that must be from my donor.

-Keep a chart of your weight, blood pressure, temperature and, if applicable, your JP drain output, blood sugar (if diabetic) and accomplishments/progress. I use excel and then just print when it comes time for my clinic appointment.

-Drink a lot of water post transplant. It will help if you are on prograf, which can be hard on the kidneys and it will also help your bowel movements.

-Send out an email to all your friends and family telling them that, although you would love to see them, please do not come to see you if they are sick or think they may be getting sick. You can’t risk it! Explain to them why (no immune system).

-I had to buy a reliable thermometer and blood pressure cuff. They were expensive but necessary.

-Take your meds at the same time every day. This is supposed to help keep your levels the same. Setting your alarm on your cell phone every day may help. So will mymedschedule.com which will send you texts/emails when you need to take them.

-Taking apple cider vinegar every day will help your immune system to not be so run down. Infections cannot live in an alkaline blood and drinking ACV makes your blood more alkaline. You can mix apple cider vinegar with aluminum free baking soda to take away the acidity, this is basically doing a step for your body, your body uses sodium bicarbonate to neutralize the apple cider vinegar, you are just doing it for your body! You can get AL free baking soda at any health food store. You mix 2 tablespoons of apple cider vinegar with 1/4 tsp of aluminum free baking soda and water (I add stevia too). Drink on a daily basis. Amy mentions this on her post transplant staying healthy post on her blog: http://www.rockscarlove.com/5-things-to-do-to-stay-healthy/

-Make a list of questions before your appointments. Think of everything. I was told I stumped my team more than once with my random questions. They seemed to like this as I wasn’t the typical patient. I asked about acupuncture and wanting to see my cirrhotic liver and having pictures taken of it, every little detailed question I could imagine, I asked. Each patient is in charge of their own health, the more you know, the more in charge you are.

-Bring a notepad to your pre and post op appointments. Also bring it with you to your transplant, they will give you tons of information that you will forget, writing it down helps. Try to bring someone with you to appointments; two sets of ears are better than one.

Tips from other transplant patients:

-Bring a list of your medical history, including lab results, surgeries, procedures, appointments, and any other “events” you’ve experienced but didn’t seek medical treatment for, such as falls, colds, headaches, sugar levels (if diabetic). I was amazed at how much paperwork got “lost” even after being digitized.

-Bring a list of medications to any and every doctor appointment. List the name, dosage, frequency, side effects YOU have experienced, changes in dosage and why, and why YOU take the medication. Some medications are taken for different reasons for different people. Keep a copy on your fridge (firefighters are taught to look for medical info there) and one in your purse/wallet.

-Keep a healthcare contact list. Include all your doctors and their specialties, address, phone and fax numbers. Also keep emergency family/friend contacts on it. Doing this will improve communication between doctors considerably and makes ER admits much easier. Keep a copy on your fridge (firefighters are taught to look for medical info there) and one in your purse/wallet.

-If you can’t bring a 2nd person with you to your appointment, record it. Most cell phones have a basic record feature or you can buy a small audio recorder for $30.

-Keep a “hospital bag” (similar to what an expectant mother would have) ready to go. Keep your basics for an overnight stay (personal care items, book, bible, PJs, outfit to leave hospital in, this is pretty basic, bring whatever you think you will need). They told me to always bring a bag to my post-transplant clinic appointments because sometimes they may want to admit me. This way you have to leave asap for hospital, you are ready to go!

-You are your number one healthcare professional. No one knows more than you do as to how you feel, what medications work, those that don’t and you have the final say on all procedures. They can’t force a procedure or test on you that you’re not comfortable with. Challenge your healthcare team if you don’t understand something. Ask questions until you understand.

-Protect Yourself: Always have hand sanitizer with you. Wash your hands all the time, especially before eating. Wear a face mask on the plane for the first few months post transplant (or until you feel comfortable without one). For the first few months stay away from large crowds or anywhere you may get sick easily.

-Have post-transplant life goals. Don’t sit at home and do nothing. Honor your donor, go out and live, accomplish your dreams and overcome your fears. Go back to work (even if that is being a stay at home mom). Join a gym, at any age! Set goals, write them down, tell others about them, dream big and take little steps. Read books on setting life goals, on becoming what you want to be, etc, etc…

-It is possible for your incision to re-open. After your staples are removed, ask them to steri-strip your incision. Your inside stitches (holding your muscles together) also can come up through your skin a few weeks after your staples have been removed. These problems are both very rare but I thought I would mention them.

-After your staples have been removed, ask your team if you can wear a pregnancy belly band, it will help to secure your incision and give you stomach support.

-Liver patients, be aware that fatty/greasy foods may give you an upset stomach. They remove your gallbladder during surgery and thus you have no bile to break down the fats which can cause diarrhea and/or stomach upset. However, not everyone has problems with having their gallbladders removed.

-Keep a schedule of your medications on either drugs.com or mymedschedule.com The benefit of using drugs.com is that it shows you all interactions between drugs and can prevent any mistaken prescriptions by doctors other than your transplant team. By using mymedschedule.com they will send you reminders and shows you what the meds do. It is a great site.

-Develop a healthy, friendly relationship with your team. Follow their advice/rules and be compliant but do not be afraid to live. Balance in everything is the key. Keep your appointments.


Written by Kortni Gehri, with the help of “The Transplant Community Outreach” and “Organ Transplant- Living Donor Awareness” facebook groups. Thank you all for your contribution. I pray this will help future transplant patients!

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6 responses »

  1. can we take apple cidar vineger After surgery of Kidney transplant

    Reply
  2. Thanks for this post sir. I had kidney transplant 3 years ago. Presently I am having apple cider vinegar mixed with water 3 times a day before meal for just weight management. I want to know is this ACV harmful for me? Thanks in advance sir

    Reply
  3. Good evening sir, I had transplant 3 years back. My creatinine level is consistent between 0.8 between 0.9. Recently I have started using apple cider vinegar. I dilute it with water and have it 3 time a day before meal. Just for weight management. Sir I want to is it healthy for me to consume ACV??? Please reply. Thanks in advance

    Reply
  4. Thank you for this list. I’m 3 days out of surgery/hospital (liver transplant) and this has been very helpful. My taste buds are different.

    Reply

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