The Transplant Caregiving Crash Course I Wish I’d Had

As I sat in my mom’s hospital room on the day of her long-awaited discharge, I felt like we were bringing home a very fragile adult baby. Her body had been through a series of assaults starting with an acute exacerbation of IPF and ending with a double-lung transplant. Three months in the ICU on a ventilator left her weak.

A parade of doctors came to give us discharge briefings. A respiratory therapist taught us how to prepare nebulizer treatments. A nutritionist reviewed dietary recommendations and food safety rules. A pharmacist gave a long lecture about more than 20 oral medications my mom would need twice daily, and taught us how to use a glucometer and an insulin pen. A cardiologist, pulmonologist, and nephrologist each made an appearance. Finally, the post-transplant nurse coordinator came in and delivered the all-inclusive spiel about life with new lungs. 

During the final lecture, my brain, overflowing with information, boiled into a panic attack. All I could think was I’ll never remember all of this. Why isn’t there a “What to Expect When You’re Expecting an Adult Baby with New Organs and No Immune System” book?!

The University of California, San Francisco has a comprehensive video series for lung transplant patients and caregivers. I watched every second of the pre- and post-transplant videos for both caregivers and patients. I listened to doctors and asked questions. I read every page of the blue binder, the UCSF transplant bible. And I still felt totally freaked out when the moment came. 

Taking home someone with brand new lungs is like bringing home a new baby. You can read all the books, attend all the classes, listen to all the experts, but it’s still intimidating to leave the safety net.

As far as I know, there is no comprehensive resource for becoming a caregiver for a transplant patient. There can’t be. Every case is so unique that it would be insane to try to write a book that accommodates all the variables. So, I’d like to give soon to be caregivers a basic rundown of what you can expect.

This is a serious job, and it requires dedication. Your loved one’s life depends on it. I know that statement is scary, but you can do it!

Medications

There are a lot of them. Most medications are taken 12 hours apart. Some may need to be taken in the middle, or multiple times during the day. You will get a big list of what to take, the dosage, and when to take it. Obey the list.

Use pillboxes with at least morning and night slots for every day of the week. At first, you shouldn’t sort more than a day at a time. Blood tests monitor levels of certain medications weekly, and if you need to adjust the dosage, you may be in trouble trying to figure out which pills are which once they’re out of the original bottle. 

Set alarms for when pills need to be taken, and for when other treatments need to be administered. Nebulizer treatments and subcutaneous injections may be part of your routine. If you have a fear of needles, you’ll get over it. Most patients come out of transplant diabetic, which often is temporary, so you likely will need to get comfy with using an insulin pen. 

Cleaning

We all should be used to frequent hand-washing, mask-wearing, and surface-disinfecting, so this should be easy. Just remember that the smallest bugs could be a major problem for your loved one, so disinfect high-touch surfaces daily. 

Bathing and dressing  

Even if your loved one goes into transplant relatively healthy, they will come out feeling like they got steamrolled. The surgery is extremely invasive, and the core muscles that help you move around will hurt for a long time. You will probably have to help them get dressed, use the restroom, and bathe for a few weeks to months. Tools like a transfer bench, showerhead hose, and elevated toilet seat will help make the bathroom a safer place.  

Helping your loved one get dressed starts with picking out comfortable clothes. Tops should be front closing or loose enough to go on without them raising their arms above shoulder level. Nothing should be too constricting, and the fabrics should not be rough.

The medication prednisone causes fragile, sensitive skin, and blood thinners can cause small wounds to bleed a lot. Something as simple as too-tight socks could cause bruising.  

Mobility  

Exercise is crucial after transplant. A physical therapist should visit you to help out, but you will need to encourage your loved one to get up and move every day. Be there to catch them if they stumble, and remind them how far they’ve come when they get discouraged. 

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.