When people go through the evaluation process, some question why social support is critical. A transplant center will tell you, “it’s required,” but why?
I’ve been post-transplant for almost eight years now, and the need for social support is obvious to me. I’ve learned from volunteering at my transplant center that some find this need confusing and even “unfair.”
It’s Really a Requirement?
Yep, it really is. I’ve participated in many pre-transplant training classes. These classes were once given in person to candidates at my transplant hospital. The first time I heard someone raise a concern about social support, I thought it was strange. But then, I heard it again and again. “I live alone and my family can’t help. You shouldn’t require me to have support!” “My friends and family work, making this rule unfair.”
On the surface, this may sound like an arbitrary rule. But when you look at the entire transplant process, you’ll see why it’s so critical. It’s not only for pre-transplant either. The need for social support falls into place during and after your transplant too.
Pre-Transplant Social Support
It’s not only about having someone drive you home after your transplant. There are the critical things that require social support. Then there the smaller but oh-so-important pieces too.
Procedures
Going through the evaluation process is no easy task. At my transplant hospital (for liver transplant), this is a full two-day process. To start. In those two days, here are some of the things a patient may need to complete:
- X-Ray
- Ultrasound
- MRI
- CT Scan
- Stress Test
- ECG/EKG
- Echocardiogram
- EGD (upper endoscopy)
- Colonoscopy (depending on your age)
- ERCP (for those with biliary conditions)
- Blood Draws (to the tune of 14-16 tubes on day one and another tube or more on day two)
- Urine Sample
- Meetings:
- Hepatologist
- Surgeon
- Transplant Nurse Coordinator
- Social Worker
- Finance
- Dietician
- Pharmacist
- Behavioral Health Specialist (if necessary)
Some of these procedures require sedation and so a patient will not be able to drive. After these two days of rigorous tests, it’s not uncommon for someone to have to complete more tests. These could include more pulmonary and cardiology tests, cancer screening, or vaccines. There could be other follow-up tests performed as well. Driving is only one small component of the support that would be needed during this time.
Emotional Support
Going through a transplant is often called a journey for a reason. This isn’t a walk in the park. Transplant is hard. The wait is hard, being sick is hard, there is pain, and the anxiety is real. Post-transplant there can be guilt, trauma, and PTSD. There will be days where things seem impossible. Having a therapist or talking with a social worker is great. But daily emotional support is important too.
Confusion
With a liver transplant candidate, HE is something most people deal with at some point. This can cause confusion that can be mild, “where did I put my keys?” to a severe hepatic coma (still breathing but not alert or unable to rouse). Because of this, many liver transplant patients can no longer drive. Confusion can come from medications as well.
When I was sick pre-transplant, I had several bouts of HE. Sometimes, it would get to the point where I didn’t even know my name or my mom would find me standing alone in the garage. As you can imagine, if you can’t even remember your name, there’s no way you could drive yourself to get help. Or even be aware enough to dial 9-1-1.
Medication Management
Medications pre-transplant can change often. By often, I’m talking by the day. There were times where my diuretics (water pills) would change from one day to the next. And it’s not only the dosing or frequency, it’s the sheer quantity of medications.
Having someone help you keep track of all those changes is great. On top of that, you’ll have more people in the know. They can help relay information to doctors in the event you are not lucid enough to do so yourself.
Physical Help
You may have nausea, loss of appetite, and muscle atrophy. Navigating to and from the car, your room, or even trying to make a meal may become more difficult. While it’s not a given, it is something that can happen, and if it does you’ll need help.
Transplant Day Support
As you can imagine, when you get the call for your transplant, your emotions will be all over the board. You may experience anxiety, grief, fear, excitement, and relief. Having someone there simply to talk to as you wait for your transplant is huge. The wait on surgery day can be long (it was 18 hours from call to surgery for me). It sure helps to have someone to keep you company.
There also needs to be someone with you to help make any medical decisions that might arise. It’s not a pleasant subject, but not all surgery goes without a hitch. Doctors will already have what they need to administer blood and other support. But in the event there is a complication during surgery or immediately after, someone needs to be able to speak on your behalf. Transplants are highly successful, so don’t let this scare you. Having someone to help make decisions is an important piece of the puzzle.
Post-Transplant Social Support
Alright, so it’s no surprise you’d need some support right after your surgery. You’ll have nurses and doctors around often while you are in the hospital. But there are some things that are better left to your social support.
When you are coming out of anesthesia, it is helpful and comforting to have someone with you who you know and trust. You’ll also need to be out of bed and moving around soon after your transplant. In the hospital where I received my transplant, this typically starts the day after surgery. I’m here to tell you that encouragement by someone you love and trust is the way to go. Nurses don’t like to have to nag you and, I don’t know about you, but I don’t like being the recipient of nagging either.
When you go home, you’ll still need some help. You will have lifting restrictions, driving restrictions, and you’ll be on pain medication. Social support is critical at this point with all of these restrictions. Again, at my transplant center, patients come in for blood work and clinic visits twice a week after their discharge. As a patient recovers, these visits move to once a week, once every two weeks, and finally once a month. Since you can’t drive, you will need someone to go with you to these visits. And, since you will likely be on pain medication, having someone with you to help take notes is useful too.
Social Support Is Critical
The journey from diagnosis is a long and hard journey. Maybe you have acute liver failure that requires your transplant in a matter of days. Or, perhaps you have a condition that prolongs your wait to years. Either way, the journey is hard. Going through the physical aspects is one thing. Yet there are so many other things a transplant candidate must endure throughout the process.
As much as we would like things to be as simple as diagnosis, go home and wait, and *poof* transplant, that’s not the reality. Having people in your corner is a good thing any time you face a challenge in life. When that challenge is a transplant, it truly is critical. Not only to your well-being but also to your survival!
Keep in mind, the transplant process has been fine-tuned over decades. The requirements transplant centers put in place are not arbitrary. They have honed in on all the things that promote the highest success for your transplant and have made those things requirements.
Make sure you have the social support you need for all the pieces of your journey. It will make the trip easier and you’ll not regret having the help.
