This post unravels all the things you are not told before you have a heart transplant. It is lived experience written with honesty. Let’s unpack all the things you need to know about a heart transplant and what to expect in the days, weeks and months after transplant. As always I hope you are Enlightened, Inspired and Entertained through my truth.
What They Didn’t Tell Me About a Heart Transplant
If you have read other posts on this site, you may have an impression of me already. I like to research, seek information and be prepared, particularly when it comes to my or my family’s health issues. I would like to think that I was well read and informed before Consenting To A Heart Transplant. The reality is, nothing compares to lived experience.
What I Learnt After A Heart Transplant
The following is a summary of what I was completely unprepared for after the Heart Transplant. As daunting as all this was and still is, I am forever grateful for the extra time I have been given to create memories with my loved ones.
Loss of muscle strength and control.
Transplant patients I had met prior to my surgery advised me to be as active and be as fit as possible before the transplant surgery. I had been doing squats and lunges, walking and sit ups as much as my damaged and scarred heart would allow me.
I was unprepared for the complete loss of muscle strength and control I felt after Heart Transplant. Many transplant patients will experience muscle weakness and loss of use of your legs. This is not only surprising but can be a frustrating and challenging experience. It’s important to work closely with your physical therapy and rehabilitation teams. While progress may be slow at first, many people are able to regain function and return to their normal activities.
Toileting Challenges in ICU
In an earlier post, WHAT HAPPENS IN ICU AFTER A HEART TRANSPLANT?, I described having an inbound catheter to avoid urination requirements. I was so determined not to use a bedpan for bowel motions that I stood up out of bed on day 2 to shuffle my way with a nurse’s support to a commode brought to my ICU room. I wasn’t allowed to do this until a particular CVL catheter was removed from my neck.
My advice is to not take ALL the poo bombs or laxative tablets they give you. Take the first tablets on offer then see how your bowels react. I naively took ALL of them as they were administered and developed severe diarrhoea for days. You do not want diarrhoea post any surgery especially when your legs are weak and not working.
On the flip side, my determination to not use a bedpan helped me get mobile in ICU on day 2 post transplant surgery. I am sure this helped me regain a small amount of lower limb strength. This shortened my hospital stay.
Swallowing And Voice Disorders
Transplant patients may experience lesser-known complications including swallowing disorders (dysphagia), and voice disorders (dysphonia). I have found that I still unconsciously forget to swallow my spit. DelightfulI, I know and embarrassing as I cough and splutter to clear my airway. Given recent COVID concerns this is not a good look while in public, especially while I am wearing a mask to prevent infections and people glare at me as if I am infectious.
I also find that I cannot eat dry meat, chicken/beef etc as it becomes stuck and I end up choking. While these are mild dysphagia symptoms, I have been fortunate enough not to have any ongoing issues with my voice apart from the initial hoarseness caused by the ventilator tube. It is so individual it is impossible to predict what a patient may experience post transplant. More information can be found in this article written by a few members of my heart transplant team, Swallowing and laryngeal complications in lung and heart transplantation.
Swallowing difficulties can lead to malnutrition and dehydration. It’s important to seek medical advice if you are experiencing difficulty swallowing. Treatment options may include behavioural changes, such as eating smaller and more frequent meals, or dietary changes, such as pureed foods or thickened liquids.
My dietician prescribed a high protein supplement shake/drink which was supplied while in hospital. The dietician also provided me with a referral / prescription for the protein supplement as it is subsidised and I can buy it for half price. I use the chocolate and cappuccino varieties. Here is the link: https://www.fresubin.com/fresubin-2-kcal-drink
Changes in Taste and Smell
Finally, your sense of taste and smell may change and is a common experience for transplant and cardiac patients. You may notice that you have a poor appetite and find that food has lost its flavour. You may even experience a strange metallic taste in your mouth.
These sensory changes can be caused by the operation or your medication and can take 3 months or so to fully recover. Try to eat small amounts of cold and simple foods. My transplant dietician ordered extra foods for me to encourage me to eat. She also gave me a sodium bicarbonate mouthwash to use before and after eating or drinking.
Jugular Vein Thrombosis
The central venous catheter (CVL) inserted into my right jugular vein and the IV medications administered through the CVL caused a thrombosis or clot in the right internal jugular vein. This was initially treated with Warfarin for 6 months. Regular ultrasounds showed the thrombosis resolving, however, the jugular vein was almost totally obliterated and chronically blocked. I have been referred to a vascular surgeon. It could mean I need a 12th surgery to repair or replace the IJV. I will provide an update when I can.
Denervation Of The Vagus Nerve
What Does The Vagus Nerve Do?
During a heart transplant the Vagus Nerve is cut. The Vagus Nerve is a Cranial Nerve, meaning it is directly connected to the brain. The Vagus Nerve has Output Nerves and Input Nerves. The Output nerves controls muscles responsible for swallowing, coughing and voice sounds. The Input nerves transmit sensations and electrical feedback from the heart, lung, stomach and upper bowel to the brain.
This leaves the nervous system and the heart disconnected, this is called “denervation.” Surgeons cannot completely reconnect the nerves during transplant surgery. This means there is no direct nerve to control heart rate and volume change inside the transplanted heart. While heart transplant recipients can expect near-normal function, there are some differences in the transplanted heart.
Angina and Heart Rate
Heart Transplant recipients, generally do not experience angina pain (chest pain) if there is a narrowing of the coronary arteries. They will have a faster than normal resting heart rate of 90-100 beats per minute. Their heart rate will be slower to respond to the demands of exercise. Patients may feel dizzy or light-headed if they change position too quickly, walk up a flight of stairs or walk/run suddenly.
Heart Rate Response to Exercise Post Heart Transplant
I find that when I walk up stairs my heart does not respond immediately like it used to. It fails to beat more quickly to provide me with extra blood and oxygen needed upon movement. This causes my legs to feel heavy as if they were made of lead. I am quickly breathless and exhausted. By the time I have reached the top of the stairs and sat down my heart has only just caught up. Expressing my frustration I have been heard to say “thanks Wednesday but you’re too late girl”.
If I squeeze my butt and legs and do a few ankle rotations or leg pumps before standing up, walking up stairs or before exercise it gives my heart time to get revved up and ready for action. Transitioning from sitting to standing and immediate movement is always challenging.
Start exercise with a slow warm-up to allow the heart rate to increase gradually. After exercise, cool down or warm down by slowly walking or bike riding to allow the heart rate to return to normal. The heart needs to get its messages via the I often get caught out when I forget to do this and will end up dizzy, short of breath and feeling a little nauseous. It’s a good reminder that post transplant you need to take things slowly and take time to recover and heal.
Gastroesophageal Reflux Disease (GERD)
After the Vagus Nerve is cut the brain is no longer in direct contact with the heart, stomach, lung and upper bowel. Combined with side effects from Anti-rejection Medications, many Heart/Lung Transplant Recipients will experience some form of GERD post transplant.
Symptoms of GERD include:
A burning sensation in the chest (heartburn)
Backing up of stomach acids (reflux) with a sour or bitter taste in your mouth or waking with an unexplained sore throat.
Stomach discomfort (dyspepsia) with nausea or bloating after eating.
Shortness of breath or a chronic cough associated with heartburn.
Foods To Avoid To Reduce GERD
Foods that may aggravate GERD symptoms include: alcohol, citrus foods, chocolate, fried and spicy foods.
See Your Doctor About GERD
Do not suffer GERD. Please consider asking the Transplant Team or seeing your GP to treat GERD early. They may initially suggest losing weight, changing your diet to avoid foods listed above and not eating 3 hours before lying down or sleeping to allow time for food to be digested.
The team or GP may prescribe an antacid immediately. See the next three posts on Medications. This is to prevent post transplant medications causing GERD or stomach ulcers or upsets. I was prescribed Pantoprazole and was also taking an antacid called Rennie Tablets. Despite these medications I have awful reflux symptoms that impact my appetite and comfort. I am having an Abdominal Ultrasound in the morning to screen me for other complications
Hope and Grace
As stated at the start of this post, a heart/lung transplant is a daunting prospect. Please be comforted and know that you are not alone. There is a wonderful community of support for you to tap into. I am a member of the Together In Transplant FaceBook support group. The heart transplant team are fantastic in their care and support.
If you would like to read more related posts follow these links: What You Need To Know After A Heart Transplant, Surgical Support Waiting For A Transplant and Crucial Testing After A Heart Or Lung Transplant.
Despite the trauma and challenges I would do it all again. Time spent and memories made with loved ones is the key to joy, hope, grace and healing under pressure.
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