This post explores general and practical information about preparing and taking medications after a heart / Lung transplant. It is extremely important that you never run out of medications after a heart/lung transplant.
Tips On Taking Anti-rejection Medications After A Heart / Lung Transplant
This post is part 1 of three posts about post heart / lung transplant medications. Firstly, let’s explore general and practical information about taking medications after a heart / Lung transplant at home or while in hospital.
From IV To Oral Medications
When you wake up in ICU after a transplant you will have a central Venous Line inserted into your neck. The anti-rejection medications and other medications you need after transplant will be given via this IV line. As you recover from surgery these IV lines are removed. Following this you will start taking heart/lung transplant medications orally.
The aim is for you to be able to go home and be confident in self administering all your medications including the life saving anti-rejection medications. Indeed, it is vital that you never run out of anti rejection medications once you are discharged from hospital.
Initially the nurses will administer your medications. As they do say they will tell you the name, brand and strength of each drug. They do this to help you identify your medications quickly.
In a few days the nurses will put all of your oral medications in a bedside drawer next to you. A nurse will sit with you and assist you to get your own oral medications ready at the correct time and dose.
You and the nurse will follow a schedule provided to you by the Transplant Pharmacist. I was given a little Blue Medications Book. The medication details were written in pencil. Moreover, you will soon see that your medications will regularly change depending on your level of rejection.
Taking Your Anti-rejection Medications At Home After Your Transplant
As you are discharged from hospital, the Transplant Educator may provide you with a medications pill-box. The one I was given has seven days. Each day is set out as Morning, Midday, Afternoon, and Evening.
It is extremely important that you never run out of anti-rejection medications after a heart/lung transplant. You might consider creating a system at home to prepare daily medications across a week. This saves you time and improves your accuracy as you cross check your medications book.
Medicine Boxes
I have two large plastic lidded tubs as medicine containers. The first plastic tub has every daily medication I need to take. I use this tub to create my seven day supply of medications.
The second plastic tub holds a back-up of each medication to ensure I never run out of one. In fact, when I use up a box or bottle of medication when creating the weekly pill box, I replace it with an unopened box or bottle from the second tub. I then immediately get out a script to take to the chemist to be dispensed next time a chemist visit occurs. Believe me you will always feel like you are at the chemist.
Depending on your state or country of transplant you may find that some anti rejection medications can only be dispensed from your transplant hospital. For example I collect or get mailed to me my Tacrolimus supply through St Vincent’s Hospital.
Tracking Your Medications After A Heart/Lung Transplant
Keep an accurate list of all medications. I now keep an updated list on my mobile for convenience.
Taking Medications While In Hospital As A Patient
If you are returning to the hospital where you had your transplant you can be pretty certain they will have the exact medications including brands you need.
It is best to take in a few days worth of your medications as you may be admitted outside of hospital pharmacy hours. During my hospital stays, I found that all medications were supplied by my transplant hospital.
Rarely have I needed to use my own medication. However, if my admission was out of pharmacy hours and the medication was not available immediately due to the pharmacy being closed it was critical that I had my own supply.
What Are Hospital Protocols For Medications?
Hospitals that are not your original transplant hospital are quite different in their policies and procedures regarding medications. Generally, hospital procedures do not want patients to administer their own medication. You may have even experienced situations where the nurse often confiscates all your medications and locks them in a drawer. Hospitals prefer that you avoid using medication blister packs or tablet boxes. They want medications to be labelled in their original packaging.
My advice after transplant is to take all your medications, most importantly your anti-rejection medications with you to a non-transplant hospital. Do not allow nurses to confiscate and lock up your post transplant medications. Post transplant you will be given a strict time schedule to take all your daily medications. The timing of medications is crucial as it prevents some medications interacting negatively with others. It is vital that you only take the exact brand of medications supplied to you by the transplant team/pharmacist.
Tips To Avoid Swapping Medication Brands
Certain brands are not interchangeable. You must insist on the exact brand. Even the brand and formulation of your calcium tablets matter. If you are a hospital patient or carer of a patient you will be well aware that hospitals administer medications in little cups. The concern with this is, you do not know the brand or the strength of each medication. You will also know that hospitals have their own scheduled times to administer medications. The lack of consistency and assurance a transplant patient requires means you must keep your tablets with you and administer them yourself.
Self Advocacy And Individualised Care
Yes this will mean you will need to advocate for yourself or the patient. I suggest you ask the Doctor in charge to write an “S” beside each medication to alert nurses that you are self administering your medications. You will need patience as I found I still needed to tell each nurse each shift that the protocol was different for a Heart Transplant. I respect policy and protocols but as an organ transplant recipient you will need to politely and respectfully insist on individualised care.
What Is Pharmaceutical Benefits Scheme (PBS)
The Pharmaceutical Benefits Scheme (PBS) is an Australian Government program. It provides AustralianCitizens with subsidised medicines to make them more affordable. This means you can access medicines when you need them most and save money.
PBS TIP:
Ask the hospital Pharmacist to record all scripts dispensed to you as an in or out-patient on the (Australian) PBS record. Even if you have not paid for medications while in hospital they count towards your PBS Limit. This means that when you reach the thresh-hold you pay less for each prescription for the rest of the calendar year. Post Transplant you will often feel like you are always at the Chemist! In fact you may feel like a walking talking Chemical Cocktail!
Share with us
If you have a tip or system to preparing your transplant medications please share your ideas in the comment form below.
Take care!
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