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Tips for Transplant Surgery/Hospitalization

-If you are able, start working out before hand to strengthen your body. I wasn’t able to because I was too sick but my sister was and it really helped her.

-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.

-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. 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.

-Ask about family donating blood on your behalf before surgery. If you are a donor you will probably be asked to donate your own blood for surgery, I know my amazing living donor had to. I needed all kinds of blood transfusions post-transplant and I wish now that I had asked family before hand to donate on my behalf.

-Shave your arms before surgery. This will make pulling the tape off from all the IV’s/blood draws so much easier/less painful. I used my fiance’s electric razor, it was fast and easy. Shh don’t tell him! =P

-Go to walgreens BEFORE your transplant, buy an enema kit that has a red hot water bottle in it. No, you don’t need an enema, just the hot water bottle. This may cost $15 but was another of my top investments for my hospital stay. You can put boiling water in it and it stays hot for 4+ hours. The heat packs at the hospital stay hot for 10 minutes. Worthless! I needed it for my back, my stomach (gas pains), and my arms that were bruised from all my IVs. It was invaluable to me. Other transplant patients have said the same. You can throw out all the other pieces and just keep the hot water bottle if you like.

-Before my transplant, I went on a mini shopping spree at Victoria’s Secret. I wanted to feel my best in the hospital and that meant new underwear and pj’s! Then I made sure I got my hair done a few days before and the day of surgery I had a manicure & pedicure using the gel that lasts 3 weeks/doesn’t chip. It was awesome! We made sure it was ok beforehand that I could have nail polish on my fingers, we asked the coordinator and she said it was fine. So if you do get a manicure, ask beforehand, some may let you others may not. My team was awesome and totally chill so they didn’t care. Being that I felt like I had no dignity in ICU it was those little things that helped make me feel a tiny bit better.

-Have a good antibacterial gel/foam for the hospital. You won’t want to constantly get up to wash your hands. You may have wounds from IVs so alcohol-free is best. Silver Soft Antibacterial is a great one; it kills MRSA, is alcohol free and yes a little expensive but was one of my best investments for my hospital stay. I felt safer using it because I knew it was a good quality one.
http://www.silversoftforskin.com/hand-sanitizer.html

-I brought all kinds of my own pillows, 2 normal pillows and 2 mini pillows for strategic positioning. It was impossible to get comfortable after my 2nd transplant and all the pillows really helped. (Bring extra pillowcases too).

-Quality, throw away ear plugs are a must, especially for ICU! One night there was a woman screaming… all night long. I was so thankful I not only had ear plugs but my i-pod with noise canceling headphones to use on top of them. It was perfect.

-Eye Mask! The high dose of steroids really screwed up my sleep habits, sleep was nearly impossible for me. I was so thankful for my eye mask because a lot of the time I slept during the day. Don’t be afraid to sleep on your family and friends. You come first and need to rest as much as you can.

-CHAPSTICK! Have your caregiver/loved one carry this everywhere you go, pre-op, recovery, ICU, floor, etc… it will become your best friend I promise you. Lizard Lips is my favorite brand, it is natural and tastes delicious. I got it at a health food store.

-Dry Shampoo was my friend in ICU because I couldn’t exactly wash my hair, so the dry shampoo really helped me from looking like a greasy monkey.

-Baby wipes are helpful when you can’t yet shower.

-Disposable toothbrushes or your own toothbrush with a cover on it. Just think of how many germs there are in the hospital…

-Bring scented clorox wipes, they smell good and then you can wipe everything in your room down. I was kind of a germ freak but I had heard way too many stories of people getting MRSA while in the hospital, so being a germ freak was ok with me.

-Ask everyone who touches you, brings you food, nurses, doctors… EVERYONE to wash their hands. Using hand sanitizer doesn’t cut it, they need to actually wash their hands with soap and water. This may be awkward but it is worth it, you don’t want to get an infection and prolong your stay. Stand up for yourself. Another transplant patient mentioned laminating a sign and hanging it above your bed asking all who enter to wash their hands. I have to admit I was too out of it to do this, I think it is a great idea though (especially the sign).

-Don’t let your pain level get higher than a 5 because the higher it goes, the harder it is to control. Do not be afraid of taking pain meds! It hurts, you shouldn’t have to be in pain though. They can tend to not want to give you the pain meds, fight for them! I had a terrible time getting my pain under control and at times it was like pulling teeth to get pain meds.

-Drink a lot of water post transplant. It will help if you are on prograf (which you likely will be), 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…

-This is VERY important, the most important tip there is: STAY UP ON YOUR BOWEL MOVEMENTS! If you don’t, you will be absolutely miserable. The pain will not be bearable. You will be distended, have very bad gas pain and be bloated. I was taking stool softeners, senna pills, miralax and even all of those still don’t work. Every few days I have to take a suppository, dulcolax. This is the number 1 tip from all transplant patients. Try prune juice, apple juice, fiber… make it an every day priority to have a bowel movement. I promise this will make recovery so much better.

-Walk! ASAP. They will tell you this but it is the #2 biggest tip (besides the bowel movements and this tip helps immensely with bowel movements). The more you walk (as awful as it may be), the faster you will have a bowel movement and the faster you will recover. I walked 7 laps around the transplant floor the first day I was taken out of ICU. The 2nd day was a bad day for me emotionally and physically and I was only able to walk 1 lap. You do what you can but always push.

-It might take your transplant team a few days to find the right pain killer for you. Good things take time. If you know what works best for you, tell them in advance.

-Hospital food gets old. Have your family bring you good, healthy outside food. Try to eat at healthy as possible! When I was on liquids, I enjoyed miso soup, it has probiotics and minerals.

-Eat very low sugar post-transplant. This will help with weight gain and healing time of your wound/incision/transplant. Also, high protein and fiber is very important as your body needs the extra protein to heal and the fiber for bowel movements. Eat your veggies and meat!

-Ask for a picc line. There is no need for excess pain (IV’s, blood draws). I loved having a picc line!

-Living liver donors will likely have more pain than the recipient. The donor and recipient may also have right shoulder pain. This is referred pain from the liver. The donor will likely have it worse because their liver is the one being chopped up and the nerve endings messed with. My sister says advil and a heating pad work great for it (where the narcotics don’t touch the shoulder pain). Recipients DO NOT take advil, only donors can (always double check with your doctor on what you can and can’t take).

-Nothing ever goes perfect. Be ready for change. Be prepared for the unexpected but always, no matter what, have a thankful heart. It is the only way to get through it all.

-Pray! I can not tell you how many miracles I saw personally come to pass as a result of all the prayers of loves ones and strangers alike. God is good, all the time! He has good plans for you. It helps to lay it all down at His feet and trust Him completely because it is a crazy journey and nothing is ever for sure.

-Bring a box of 2lb chocolates for hospitalizations to share with the doctors and nurses.

-For heart transplant patients who may be on a BiVAD, bring shirts that button down the front and may be worn untucked.

-It is better to be curious rather than frightened by new feelings and sensations. If they are intrusive or uncomfortable, then ask someone about them.

-You are your number one healthcare professional. No one knows more than you do as to how you feel, what medications work and those that don’t. 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.

-Cough, sneeze, laugh and yawn before you go in for your transplant because it is going to hurt really bad after! It will last a few weeks – 2 months.

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!

6 responses »

  1. This is a great list so far. I always bring a 2lb box of chocolates and put them in my room for nurses and doctors. They feel guilty if they take one and don’t do something for you! \ Your sense of smell may be off, as well as taste buds. I insisted on no-scent Dove soap for all guests to my room, and no cologne or perfumes. Lots of foods I had loved did not taste right due to meds, but this abated after a few weeks.
    For heart transplants who might be on a BiVAD, bring shirts that button down the front and may be worn untucked. Also, be sure to take lots of walks. This helps build lung capacity, and move fluids in the body.
    Better to be curious rather than frightened by new feelings and sensations. If they are intrusive or uncomfortable, then ask someone about them. Remember to hug a pillow when sneezing or coughing. Your chest wall is very sensative.

    Reply
  2. Awesome Kortni, most of these I’ve acquired and practiced over the years but some I didn’t even think of and make perfect sense. Being a paramedic, I’m also fascinated by the human body and how it works. Here’s a couple more “tips” I’ve adopted.

    – 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 name, dose, freq, side effects YOU experience, changes in doses and why, and why YOU take the medication. Some medications are taken for different reasons for different people.

    – I also keep a healthcare contact list. This has all my doctors, their specialties, addresses, phone and fax. I also keep all my emergency family/friend contacts on it. Making all of these lists takes some time up front, but it’s worth it when it’s needed. It improves communications between doctors considerably and makes ER admits much easier. Plus you are assured everyone has the most current information.

    – I’ve always been terrible at taking notes. But you’re right, a lot of information can be thrown at you all at once and if there’s even a bit of hepatic encephalopathy you can pretty much write off retaining half of it. My wife goes with me and does a much better job at documenting and remembering than me, but if she can’t go, I record the appointment. Now a days, most cell phones have a basic record feature on it or you can buy a small audio recorder for $30.

    – I also have a “hospital bag” similar to what an expectant mother would have. I keep a pair of scrubs in it, shaving kit, extra cell phone charger, updated copies of the previous mentioned lists, some pictures, a book, and a bible. This way if I have to leave quickly for the hospital, I have everything ready to go.

    – Commenting on a couple of your ideas. The hand washing: you are so right. With our impaired immune systems, we can’t afford catching a bug let alone MRSA. And you are right about it being so hard to ask someone to wash their hands. Just seems awkward. So, I think I’m gonna make up a couple signs, laminate them, and hang them up on the room door and above the bed that simply state: “As a personal request, please wash your hands upon entering the room. Pre/Post-Transplant Patient with Impaired Immune System.” Not sure how much it will help, but couldn’t hurt.

    – 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 work, and you have 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 or something doesn’t make sense.

    – And like you said, ask all the random questions. You’ll be surprised at some of the answers you get. Like pictures, I would have never thought they would do that, but they do. I had a GI doc take pictures of my vocal cords during an upper scope because I was in paramedic school and we were learning to intubate at the time. They took a few pictures of my upper airway all they way to my vocal cords. It was really neat to see what someone else would see if they intubated me.

    Well, that’s about all I can think of. Great Job, Kortni, on putting all of these “Tips” in writing. I know your ideas will make much better hospital stays for me.

    Reply
  3. transplanted 3 weeks and you are already giving back, Well done miss.

    Reply

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