Preparing for Your Surgery
If you have a SADS condition, you may be looking at having several types of surgeries for your heart. Below, you’ll find a guide to preparing for your heart surgery, and what each surgery entails.
General Tips: Preparing for a Surgery
Written by Anna Goodson, Communications Director at the SADS Foundation
Whether you’re having an ICD replacement, lead repair, ablation, or LCSD, here are some general tips on making your surgery recovery more comfortable.
Although my rare disease is not heart-related, I also have frequent surgeries for my condition. Here are some tips I’ve found to make my recovery as stress-free as possible, as well as some items I’ve found super helpful when recovering from surgery.
Before the Surgery
- Having surgery is very stressful – both physically and psychologically. Make sure you have someone to talk to about how you’re doing as the surgery approaches, whether it’s a therapist, a spouse, or a family member/friend. You can always reach out to us if you need support!
- Once a surgery is booked, I start planning to make sure that my recovery is as stress-free as possible. This might look like asking a neighbor to walk your dog, asking your parents to take on childcare, or talking with your spouse, friends or family about what kind of help you might need post-surgery.
- The week before the surgery, I …
- Make sure all my laundry is clean – especially comfortable pajamas, socks, and sweatpants that I know I will want to wear as I recover. I put these in a special place so that I know where they are when I’m recovering and can easily find them. If I know I will have surgical incisions, I try to find clothing that will not bother the incision sites.
- Make sure all my linens are clean – especially the sheets, blankets, and towels I plan on using. If you have surgical sites, make sure to follow your doctor’s orders on how to keep them clean post-surgery. I use paper towels to clean surgical sites – just to make sure that I’m not contaminating them with a towel.
- Go grocery shopping. Anesthesia makes me feel pretty crummy, so I make sure to get stomach-friendly items like crackers, bananas, applesauce, lemon and lime popsicles, Gatorade, and plain broth. I also make sure to get peppermint tea, stool softeners, and Gas-X to help alleviate trapped gas from anesthesia and general discomfort after surgery. If you’ll be intubated during or after surgery, hard candy or cough drops can help with the post-surgery scratchy throat.
- Meal prep. I make some big pots of soup and freeze them. Then I know I’ll be set with meals for a few weeks as I recover.
- Get myself something nice! For me, this usually means going to the thrift store and getting myself a new blanket, fuzzy sweater, puzzle, or book to enjoy while I recover. It doesn’t have to be fancy – any budget-friendly item that will provide comfort will help make the recovery period a bit more cheerful.
- Make sure all my questions are answered. Whether I research my surgery on trusted patient advocacy sites (like SADS!), talk to other patients, or call my doctor or nurse to ask my questions, I make sure that any pressing questions I have are answered before I go in for surgery. (I know that during surgery prep I will be nervous and won’t be able to absorb information.)
- Make sure someone will be with me at the hospital. A spouse, friend, or family member should transport you to and from your surgery. I also ask my spouse to record what the doctor says after surgery on his phone so I can listen to it when I’m feeling better. (I know that I will still be groggy from anesthesia and may not comprehend what the doctor is saying.)
- Enlist a buddy to pick up medications. You might be prescribed pain meds and other post-surgical meds. These often start right after your surgery, so I make sure that I have someone ready to grab them from a pharmacy if needed.
- The night before the surgery, I make sure to follow all my doctor’s prep instructions as carefully as possible. You don’t want to show up at the hospital and learn that your surgery can’t happen because you didn’t follow your prep!
Items That Help Me Recover
Here are some items that have really helped me during surgery recovery:
- Hot water bottles; a heated blanket; and good-quality reusable ice packs have all helped with soreness post-surgery.
- Supportive pillows that allow me to sleep without putting pressure on surgery incision sites.
- A small weighted blanket that I can use to help with aches and pains.
- Compression socks – these help improve circulation while you’re resting.
- A library card – which allows me to rent DVDs, both movies and TV shows, to watch while I’m recovering; as well as books once I’m feeling up to reading. (I also love my Kindle for being super portable when I’m not up to carrying books around, and allowing me to get books from my library instantly.)
- Earplugs! You will be sleeping a lot during the day to let your body rest and recover.
- A fidget toy, like putty or a spinner, often helps me when I’m feeling restless but not up to moving around yet.
Common Surgeries for SADS Conditions
ICD Placement
During the procedure
A member of your health care team inserts an IV into your forearm or hand. You may get medicine called a sedative to help you relax. Several sticky patches called electrodes are placed on your chest and sometimes the legs. The patches connect to a machine that continually checks your heartbeat during the procedure.
Sometimes you’re awake when getting an ICD. Or you may get a combination of medicines to put you in a sleep-like state. This is called general anesthesia. Your health care team explains the type of sedation you’ll need.
To place the ICD, the doctor makes a small cut in the skin in the chest area. One or more flexible wires called leads are inserted into a blood vessel near the collarbone. The doctor guides the wires to the heart. One end of each wire attaches to the heart. The other ends attach to a device called a shock generator. The device is placed under the skin beneath the collarbone.
The procedure to place an ICD in the chest usually takes a few hours.
Once the ICD is in place, your doctor tests it and programs it for your specific heart rhythm needs. Testing the ICD might require speeding up the heart and then shocking it back into a regular rhythm.
After the procedure
You’ll usually go home on the day after the ICD procedure.
The area where the ICD is placed may be swollen and tender for a few days or weeks. Your doctor might prescribe pain medicine. Do not take aspirin and ibuprofen. They may increase the risk of bleeding.
For about eight weeks after getting an ICD, do not make any sudden movements that raise your left arm above your shoulder. You don’t want the device wires to move until the area is healed. You may need to limit your driving, depending on the type of ICD received. Your health care team gives you instructions on when it’s safe to return to driving and other daily activities.
For about four weeks after getting an ICD, your health care team may say not to do the following activities:
- Energetic sports or activities that may lift the left arm above the shoulder. For example, golf, tennis, swimming, bowling or vacuuming.
- Heavy lifting.
- Other types of strenuous exercise.
- Your doctor may tell you not to play contact sports after getting an ICD. A hit to the chest area may damage the ICD or cause its wires to move.
Information taken from the Mayo Clinic.
Lead Extraction
During the procedure
The subclavian approach is the most common. Your healthcare provider extracts the leads through an incision in your subclavian vein, under the collarbone (clavicle).
The other approach is through an incision in the groin next to the femoral artery. Healthcare providers use this approach when the subclavian approach is not possible.
- You undergo general anesthesia, which puts you to sleep and temporarily blocks sensation.
- Your healthcare provider places a special sheath (tube) in your vein and advances it to the lead. Your provider covers the lead with the sheath.
- A healthcare provider uses real-time imaging (fluoroscopy) to guide the sheath.
- Instruments at the sheath tip break up scar tissue, freeing a small section of the lead.
- The healthcare provider advances the sheath to the next portion of the lead that’s still in place.
- When the lead is free of scar tissue, the healthcare provider removes it along with the sheath.
- They close the incision and cover it with a bandage.
Your provider can also use a laser device that’s attached to the tip of the sheath. Laser energy creates heat that vaporizes scar tissue.
Sometimes your provider will implant new leads during the extraction procedure, sometimes later. It depends on the reason for lead removal. If there is an infection, it’s essential to get rid of it before implanting new leads.
Information taken from Cleveland Clinic.
Catheter Ablation
During the Procedure
Catheter ablation can take between two and four hours to complete. The procedure is done in an electrophysiology lab where you will be monitored closely.
Before the procedure begins, you will be given intravenous medications to help you relax and even fall asleep. In some cases, you may be put to sleep by an anesthesiologist.
After the medication has taken effect, your doctor will numb an area in your groin and make a small hole in your skin. Then, the doctor will place three or four catheters through blood vessels to your heart to help guide the procedure.
After the catheters have been placed, electrodes at the ends of the catheters are used to stimulate your heart and locate the area that is causing the abnormal heart rhythm. Then, the doctor will use mild radiofrequency heat energy to destroy or “ablate” the problem area, which is usually quite small — about one-fifth of an inch in size. Other types of ablation techniques may be used, such as cryoablation, in which very cold temperatures destroy the problem area. Your doctor will decide which type of ablation therapy is most appropriate for you. Once the tissue is destroyed, the abnormal electrical signals that created the arrhythmia can no longer be sent to the rest of the heart.
Most people do not feel pain during the procedure. You may sense mild discomfort in your chest. After the ablation is over, your doctor will remove the guide wire and catheters from your chest.
After the Procedure
After the catheter ablation, you will probably need to lie still for two to six hours to decrease the risk of bleeding. Medical staff members may apply pressure to the site where the catheter was inserted. Special machines will monitor your heart as you recover. Some people can go home the same day as the ablation, but others will stay in the hospital for one or more nights.
Information taken from Johns Hopkins Medicine.
Epicardial Ablation
During the Procedure
For patients with complex arrhythmias who have not had the desired results from traditional catheter ablation, epicardial ablation could be an alternative treatment solution. Unlike with traditional catheter ablation (or endocardial ablation) that treat arrhythmias by ablating tissue inside the heart, epicardial ablation targets the source of the arrhythmia on the outside of the heart.
In order to perform catheter ablation on the outside of the heart, it is first necessary to find a route to the outside of the heart without requiring surgery. The most direct and safest route to the space outside the heart is the region just under the breastbone at the bottom of the rib cage.
A special needle that is selected to make entry as safe as possible, is used. This needle enters to space around the heart- the space is called the pericardial space since the pericardium is the sack surrounding the heart. A special wire is inserted into the pericardial space and the needle is removed and a plastic tube is inserted over the wire.
This plastic tube is used during the procedure to allow the ablation catheter to be safely inserted into the pericardial space. Once the ablation catheter is positioned in the pericardial space the exact site of the heart rhythm problem may be identified from the outside of the heart and it treated with ablation.
Following epicardial ablation, often a small plastic tube like a long intravenous catheter may be left in place overnight to drain any fluid that may accumulate in the pericardial space. It is removed as soon as this drainage becomes minimal.
Patients may experience chest discomfort after the epicardial ablation because some degree of irritation of the pericardium, called pericarditis, usually occurs. Patients are often given medications that reduce the degree of pericarditis.
For patients with prior heart surgery, such as coronary artery bypass surgery (CABG) or heart valve surgery, the procedure for epicardial ablation must be modified. Because patients develop significant fibrous tissue due to healing after heart surgery, the standard approach to obtaining access to the pericardial space is usually not possible.
In these cases, a cardiac surgeon works with the cardiac electrophysiologist performing the catheter ablation in order to create an opening to the pericardial space. The same site of access, the region under the breastbone at the bottom of the rib cage, called the subxiphoid region, is used for the surgical access.
Once the access is obtained, a plastic tube is inserted and the epicardial catheter ablation is performed in the same manner as other epicardial ablations.
Information taken from Stanford Health.
What it’s like having an epicardial ablation
written by Christy, ACM
Epicardial VT Ablation in people with structural heart disease is not something to be entered into lightly. It can be a long, very technical procedure with very serious risks and longer recovery times than the endocardial ablation procedure. It also can be a life-benefiting procedure for those with very frequent and/or those with difficult sustained VT episodes.
I had an Epicardial VT Ablation in September 2022 after my third episode of VT in a year. The third episode was a VT storm that only ended in the hospital after I was given IV drugs. I had been shocked ten times over the course of an hour. After consulting a couple trusted doctors, I moved forward with the ablation.
My ablation took between six and seven hours. There were three incisions in my groin (for the EP study) and one in my chest for the actual procedure. I stayed in the hospital overnight. I did not have a drain placed but many people do. I remember my heart beating very fast and having more PVCs in recovery. I was released the next day but over the next few days at home I started feeling chest pressure, more PVCs and like I had a dishwasher in my heart. I had developed both a pericardial effusion and a pleural effusion. I had to have another surgery a week later to drain the fluid around my heart and a separate procedure to drain the fluid from my lung cavity. I was in the hospital for three more days. I was also immediately referred to a new heart failure specialist as my left ejection fraction had gone from 51% (from the MRI the week before the procedure) to 32% after the ablation. (Apparently this is a very rare complication.)
On a positive note, I have not had any VT for two years since the ablation. I am very grateful for that as the VT storms were not only physically challenging but also psychologically challenging. On the negative side, I am now on more medications to address my lower EF and my EF has only improved by a few percentage points since the ablation.
Would I do it again? Hindsight is 20/20. I think I made the right decision for me at the time and as patients, that is all we can do.
Before Surgery:
1. Make sure you fully understand the risks and benefits of this procedure and discuss them fully with the doctor who will be performing the surgery. Risks percentages are somewhat higher than other cardiac procedures.
2. Weigh potential complications against the benefits you expect to receive before you have the surgery.
3. Talk with at least several other people who have had this surgery to discuss their experiences.
4. Make sure you are at an epicardial ablation center of excellence and that your doctor is extremely experienced in treating people with your exact condition. Don’t be afraid to ask experience, procedure details and outcome related questions!