Devoted carers support patients through the transplant journey. There is an expectation that patients will be accompanied by a carer (or carers) during the workup for Heart / Lung Transplant listing. Your carer/s will meet the Transplant Team and attend all appointments with you pre and post surgery.
Why Carers Support For Heart Transplant Patients Is Vital?
The Transplant Team places great importance on patients having devoted carers to support patients through the transplant journey. There is an expectation that you will be accompanied by a carer (or carers) during the workup for Heart / Lung Transplant listing. Your carer/s will meet the Transplant Team and attend all appointments with you pre and post surgery. Your carer will be an enormous emotional support for you while waiting for an organ transplant. They will continue to assist you in your recovery, ideally for 3 months post surgery with medications, rehabilitation, clinic visits and post surgery medical procedures.
Carers Support As You Adjust To Life And Role Changes Post Transplant
Post transplant your lifestyle will change, it will become a new normal. Your carer will initially need to assist you with dressing, moving around, meal preparation, household tasks and transport to and from appointments. After Transplant you will have quite an intensive medical appointment schedule.
When you are discharged from hospital you and your carer will be required to attend the Heart / Lung Clinic up to three times per week for the first 2 to 3 months. This reduces to once a fortnight then once a month as long as there are no complications such as rejection or infections.
My Lived Experience:
Personally, I had the constant support from my Husband, Steve. Prior to the transplant I had 11 surgeries in 12 months and extensive hospital stays over 2 years. Steve visited me in hospital every day bringing treats, clothes, and necessities (see hospital go bag and hospital hacks).
Waiting to be listed for a transplant
During a hospital admission for sustained VT (Ventricular Tachycardia), I was administered a Lignocaine/ Lidocaine Infusion (a systemic / general anaesthetic) which effectively settles VT (Ventricular Tachycardia) which is a life threatening cardiac arrhythmia. Unfortunately a Lignocaine/ Lidocaine Infusion causes toxicity and may cause neurological symptoms.
These side effects may include insomnia or drowsiness, light-headedness, unclear speech, change in mental status, and personality changes. Effectively, I was slowly being put to sleep or being anaesthetised from the inside out. Poor Steve had to do everything for me as I was unable to stand, move or function. I felt like my brain was no longer connected to my body. I could not control my movements and speech. Lignocaine Infusion is a critical but temporary treatment due to the side effects but it kept me alive during the VT episodes.
After My Transplant
Post transplant I kept having uncontrolled tremors which impacted my left hand side and often I lost the ability to stand and would collapse without warning. There were many times when Steve would need to pick me up off the tiles after I collapsed. Post heart transplant you are not able to use your arms to push yourself up for 6 to 8 weeks. Post transplant I also lost the ability to use my legs so getting off the floor after collapsing was impossible without Steve’s help. This is a great example of why you should not be left alone at home post surgery until you are confident that you can reliably use your arms and legs and be independent.
Driving After Transplant
Technically if you feel strong enough you can drive after 6 to 8 weeks. I didn’t drive for 10 weeks and then only short local trips as I felt tired and had brain fog due to the medications. It is now 5 months post heart transplant and I still avoid driving long distances.
Doing Simple Tasks At Home
You may feel up to doing simple and easy tasks. I was able to help with dinner but only if our daughters cut up the vegetables as I found this too exhausting and I just did not have the strength. I was able to fold small, light items of clothing but did not have the strength to fold heavy or large items like towels and sheets. As you get stronger you will be able to increase your efforts. Just be sure to rest often through the day. You are still recovering and it takes time.
Gardening
I had previously loved to garden. Steve and I would spend a great deal of time maintaining and developing our gardens. We live on half an acre with bush all around our Blue Mountains property. Post transplant you will be on anti-rejection medication. This lowers your immunity to moulds and infections. While gardening protect yourself from insect bites, cuts and scratches, compost, potting mix and fertilisers etc.
I thought watering would be low risk. However, when I was watering the garden, I was bitten by a non toxic spider. Normally this would not have been an issue. For a transplant patient it means you need to see a doctor. I was prescribed oral and topical antibiotics to prevent systemic infection.
Gardening Safety Tips:
If you do decide to garden, it is suggested that you wear a mask and gloves, sun safe clothing, sunscreen and hat. Ask your Doctor or transplant team for repeat scripts of antibiotics both topical and oral in case you develop an infection. You can then have the script filled and kept for later use. It is advised that you call the team, tell them your symptoms and ask if you should start the antibiotics. This strategy has prevented me from having to visit the Emergency Department after hours to get antibiotics. Very Handy!!
Support for Carers and Family
Organ transplant is a last resort. Therefore, you and your family and friends have potentially been impacted by serious illness. This means, extended hospital stays, transplant surgical risks, possible delirium and medication side effects. Transplant surgery will impact life/work roles and an initial loss of independence. Being a carer is a lot of pressure, and can be emotionally and physically exhausting. There is a great deal of online support available to carers and family. A good starting point is via St Vincent’s Hospital: For Family and Carers.
Our W W community would love to hear from you and or family and carers. Share your story and any tips that may help our carers feel supported.
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