The Transplant Caregiving Crash Course I Wish I’d Had

The Transplant Caregiving Crash Course I Wish I’d Had
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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. 

***

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.

Originally from Northern California, Christie Patient is a twenty-something jack of all trades who now lives with her husband Jonny and two fur-babies in Washington state. Christie received her Bachelor’s Degree in Writing from The University of Nevada Reno in 2015. Her mother Holly was diagnosed with Idiopathic Pulmonary Fibrosis and received a double lung transplant in early 2019. When she isn’t writing about her experience as one of her mother’s caregivers, Christie can be found exploring the great outdoors, taking photographs, or working on art projects. She hopes that her column can be a space for other caregivers and patients of PF to find strength and understanding.
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Originally from Northern California, Christie Patient is a twenty-something jack of all trades who now lives with her husband Jonny and two fur-babies in Washington state. Christie received her Bachelor’s Degree in Writing from The University of Nevada Reno in 2015. Her mother Holly was diagnosed with Idiopathic Pulmonary Fibrosis and received a double lung transplant in early 2019. When she isn’t writing about her experience as one of her mother’s caregivers, Christie can be found exploring the great outdoors, taking photographs, or working on art projects. She hopes that her column can be a space for other caregivers and patients of PF to find strength and understanding.

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9 comments

  1. Hello Christie

    Thank you for this commentary on having a caregivers guide on caring for a lung transplant patient. I’m a 64 yo physician (soon to be retired) with stable IPF since my diagnosis almost two years ago. Still feel well but realistically at some point, even on OFEV, my time will come when i need a transplant. I hope it’s years away but if it’s too far down the road maybe my age will be a deal breaker. I live in CT so in the NE there is only Boston (Brigham’s Women’s) and Columbia Presbyterian in NYC.

    Even as a physician I am relatively clueless as to what are truly the centers of excellence and one must couple that with areas that have a climate that is livable (winters in New England; summers in Miami where my family is are not ideal)!!

    Are there (besides the internet) Good sources to help with decision making in “finding a home.” Duke? Gainesville? Vanderbilt? Washington? Phoenix?

    Ultimately i will need to figure this all out as most of us IPF patients will need to face this. Decisions on this need to be based on success rates, numbers of cases, where you have family support, acceptable climate etc.

    Thank you for any comments that you have to try to hone in on where i should consider.

    Don Salzberg MD

    • Les Viegas says:

      Hi Don,
      I read your comment above in which you asked if data is available that would assist you in making decisions about a possible lung transplant center and the attendant support issues. The short answer is YES and I am happy to share it with you. First for my background information to put my comments in context:

      I am a 77 yo lung transplant recipient living a fully normal life with minor limitations. I received my lung transplant at Cleveland Clinic 6.5 years ago and was diagnosed with IPF at Univ of Michigan Health Center 3 years prior to that. Since my transplant, I have not had any acute or chronic rejections and all my health indicators are within normal ranges thanks to the superb care that I receive from Cleveland Clinic. My wife and I spend summers in Michigan and winters in Southeast Florida. So the information I offer you is based on a successful transplant
      experience and may benefit you in your decision-making process.

      There is an organization called the United Network for Organ Sharing (UNOS) which is a private, non-profit organization that manages the nation’s organ transplant system under contract with the federal government. Their website has a lot of important and relevant data on all types of organ (including lung) transplants. They publish statistics on volumes, mortality rates, survival rates, success rates, demographics, life expectancies beyond transplant, wait time to get listed, % transplanted once listed, etc. all very helpful information to help one decide on the best transplant center for one’s needs based on one’s constraints and preferences.

      Prior to my deciding on the transplant center of my choice in 2012, I did a complete analysis and spreadsheet of relevant performance/outcome data of these centers and came up with my list of the top three centers for my needs:
      1. Duke University
      2. Cleveland Clinic
      3. Pittsburgh University
      I was listed for a transplant at both, Duke and Cleveland Clinic, traveled to Durham, NC for a transplant but for reasons too long to explain, I ended up getting a transplant at Cleveland Clinic and am most grateful for the superb staff and facilities that made the whole experience memorable.

      I hope this reference gets you started on your research path and if you need more detailed information about my experience, or have questions about transplants, please do not hesitate to let me know.
      https://unos.org/data/transplant-trends/

      Best of health.

      Les Viegas

      • Hi Les,
        Thank you for reading and responding to Dr. Salzberg. It looks like you have done a lot of research and have experience that I lack as a caregiver on the west coast. I really appreciate you sharing your information with him, and hope that you two can connect to discuss it further. And I’m happy to hear that you are going strong 6.5 years post-transplant!
        -Christie

    • Hi Dr. Salzberg,
      Thanks for reading and reaching out. I am happy to hear that your IPF is stable, and you’re nearing retirement–congratulations! I hope that you will have a lot of years to enjoy your new free time without IPF progression.
      As far as choosing a transplant program, I don’t have too much advice other than to use the resources at your disposal on the web, and through your PCM or pulmonologist. The forums on this website are full of information from patients just like you, and I am sure others would be happy to help you find the right fit if you posted your question there. It seems as though Les Viegas has done a lot of research and may be an excellent ally and help to you. I can connect you via the email addresses you shared when writing your comments, if you’d like 🙂
      https://pulmonaryfibrosisnews.com/forums/
      I have nothing but good things to say about UCSF, but of course it isn’t in your neck of the woods. If you are up for a cross country move, San Francisco does check off most of your boxes though!
      Best,
      Christie

  2. Cathy Brady says:

    Nothing or no one prepares you for the exhausting marathon of transplant surgery and recovery. It is a marathon of roller coaster ups and downs. More attention needs to be placed on educating the caregivers and family of how very hard this is. Of course, receiving a lung during COVID pandemic adds to the stress.

    • Hi Cathy,
      Thanks for reading and relating. It sure is a lot, and so many variables between each case. Even though the videos that UCSF made were helpful, nothing can really prepare you for it other than just going through with it all. I am certainly glad that we went through this pre-covid, but I know several people in our UCSF support group have had transplants in the past few months and as far as I know they are all recovering well. Surely adds more stress to an already stressful process though.
      Wishing you the best,
      Christie

  3. Linda Rusinow says:

    Hello !
    My 49 year old son has been diagnosed with IPF and is going through tests to be put on the transplant waiting list. I am looking everywhere for any information I can get. It is overwhelming to me, but I will not stop. Can you possibly link me to Les Viegas, he may be able to help me learn to research the best hospitals available. We live in Michigan.
    Thank you,
    Linda Rusinow

    • Hi Linda,
      I passed along your email address to Les. I hope he gets back to you, but if not, know you can always search our forums and columns for answers and community support. We are here for you and your son.
      Best,
      Christie

    • Les Viegas says:

      Hi Linda,

      I emailed you earlier to let you know that I am happy to assist you and your son sort out the lung transplant alternatives. If you did not receive my email, please let me know on this forum and I will get back to you.
      Les Viegas

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