Major surgery is traumatic. It was a real learning experience for me and although it has been two and a half-months since my surgery, I am still learning new things about my body every day. If statistics give us clues on future trends, most of us will go through surgery sometime in our lives. According to an article in the Journal of American College of Surgeons, the average American has 3.41 inpatient, 2.56 outpatient, and 3.20 non-OR, for an overall total of 9.17 surgical procedures in an 85-year lifespan.1 The World Health Organization also estimates that 234.2 million surgeries are undertaken around the world every year.2 Ouch. If you have never had surgery, that is certainly good for you and I sincerely hope you will never need any, but since no one knows what the future holds, it is best for all of us to be prepared.
Here is Part 2, as promised, where I will offer tips before and after surgery and a daily or weekly account of my recovery. I had thoracic surgery, specifically a partial sternotomy to remove a thymic tumor, but I suspect anyone facing any kind of major surgery can benefit from my suggestions on how to make life easier for them and their family. Of course my surgery was scheduled months in advance. These tips certainly do not apply to surgeries due to medical emergencies. And although everyone recovers differently, sharing my experience during my own recovery might be able to help other people, especially my co-MGers who have gone through a thymectomy, avoid the many things I now realize I did wrong, which probably contributed to my going back to the ICU six weeks after my surgery, which was so not fun.
Pre-surgery Tips
1. Be your own advocate. Make sure you ask your surgeon and your specialists if you can continue taking your current medications before surgery. I had to taper and stop one of my medications as it would have slowed down my healing, four weeks before surgery. A good surgeon will bring up this topic, but if he or she doesn't, make sure to ask. You may need several weeks to stop or taper your own meds before your surgery.
2. Now is the time to ask for help. I don't like asking for help. I have been too used to playing the role of supermom for so long that asking and receiving help is foreign to me. But trust me, you will need all the extra pairs of hands you can get. If you haven't already, start training your kids to do things on their own. Even a two year old can be taught to pick up toys, help water plants, and put clothes in the washer/dryer. Recruit family and friends in advance to help watch the kids, run errands, prepare meals and even stay with you in the hospital for a night or two. Do not be shy. Most people actually love to help and will jump at the chance to lend a hand. Try to get help to cover 6 weeks after surgery. Now is the time for you to be pampered like a diva and you deserve it.
3. Clean and organize your home, as long as your strength permits. Your home will be messy for a while while you're recovering and that is okay. A few weeks and days before surgery, I washed and changed bedding, cleaned out my closet, got rid of heavy pots and pans in the kitchen and replaced them with lightweight aluminum ones, cleaned out the fridge and stocked up on groceries and household supplies (toilet paper, bath products, etc.).
4. Stock up on healthful food. Cook simple meals good for at least a week and freeze them. I was already cooking meals five days post-surgery, although they were nothing too fancy. For delicious healthful smoothies, freeze ripened bananas (no peels), strawberries, and blueberries in the freezer. After you come home from the hospital this smoothie will be your magic healing potion. Blend the fruits together with coconut water and flax seed and drink once a day while you are recovering. Coconut water and bananas contain potassium to aid in hydration, promote healthy heart, bones, nerves, blood pressure and muscles, as well as alleviate MG symptoms. Strawberries contain Vitamin C which is necessary for healing. Blueberries have super food properties and are just so darn delicious. Flax seed has omega 3 fatty-acid which helps keep inflammation under control.
4. Stock up on healthful food. Cook simple meals good for at least a week and freeze them. I was already cooking meals five days post-surgery, although they were nothing too fancy. For delicious healthful smoothies, freeze ripened bananas (no peels), strawberries, and blueberries in the freezer. After you come home from the hospital this smoothie will be your magic healing potion. Blend the fruits together with coconut water and flax seed and drink once a day while you are recovering. Coconut water and bananas contain potassium to aid in hydration, promote healthy heart, bones, nerves, blood pressure and muscles, as well as alleviate MG symptoms. Strawberries contain Vitamin C which is necessary for healing. Blueberries have super food properties and are just so darn delicious. Flax seed has omega 3 fatty-acid which helps keep inflammation under control.
5. Bring or buy appropriate clothes for going home and recovery. After chest surgery, your arms will be useless for a while. I bought four pajama sets with button-down fronts, because I know it would be painful to wear regular tee shirts for several weeks. I bought pull-on yoga pants and shorts since I expected button pants will be impossible to pull on while I was still sore. For women, buy a few front closing racerback bras. I still have trouble putting on regular bras even now and I still pull my tops off like a boy.
6. Buy lots of pillows. If you are going too have thoracic surgery, you won't be sleeping flat for a while because of the pain. Stack pillows together to form a giant wedge for your back (see my drawing in Part 1). You can add or remove pillows as you gradually recover from the pain. Forget using a recliner. It is much easier to roll slowly out of bed with a hug pillow than get up from a recliner. We bought a recliner days before the surgery (I foolishly followed someone's advice from an online support group) but I just couldn't get out of it without using my arms considerably. I would have been stuck there if I needed to go to the bathroom or get up to take my medication, unless I kept waking up my poor husband to help me get up. The recliner now sits idly in our bedroom, an accidental shrine for laundry that is waiting to be ironed. At least it's clean laundry.
7. Bring a small pillow to the hospital. Hug it against your chest when the doctors and nurses ask you to cough, or else it would be pure torture. It sounds like they're just being evil, but they just want to make sure you can clear your lungs and avoid pneumonia before leaving the hospital. Holding the pillow against your chest will help dull down the pain when coughing or shifting your body to get in and our of bed. Without it, you would feel as if your chest would rip apart and the pain would be enough to make you swear, I swear. I used this pillow for several weeks at home to roll in and out of bed, when sneezing, coughing, etc. until I could do them with minimal discomfort. It became my BFF. I also used the pillow to support the back of my head on the drive home. Unless your car has a sporty bucket seat with an adjustable head rest, you will need a pillow behind your head to support its weight every time your driver hits the gas pedal a little too hard. This prevents pulling on your sore chest muscles, especially if your driver is a frustrated Indy 500 or Formula One racer.
Post-surgery Tips
1. Try to move around, get up and walk. After surgery, the nurse or a physical therapist will make you try to get up, move around and walk, even as early as the day of the surgery itself. Don't hate them for it. Although it sounds counter-intuitive, the faster you can move around and walk, the faster your body will heal. Moving helps prevent post-surgical complications like blood clots or pneumonia.
2. Take your pain medicine, and take them on time. I have a high tolerance for pain and I avoid taking medication whenever I can--just part of my powers as superwoman. I stopped taking pain medicine a few days after each of my c-sections, even though I had enough prescription for a month. But my c-sections were a piece of cake compared to my sternotomy, which brought me down to my knees. I realized then that my surgeon had lied to me when he told me that the pain of sternotomy was comparable to a c-section. Duh, but of course I should have known better than to believe him. First of all, he is a man, therefore has never had a c-section and I bet he has never had a sternotomy, even though he is an expert in performing one. So I took all my pain medication and took them on time, and I needed every single dose in order to function properly. Don't try to be brave. You will need your pain meds especially if you want to get quality sleep at night. And sleep you must in order to heal.
1. Try to move around, get up and walk. After surgery, the nurse or a physical therapist will make you try to get up, move around and walk, even as early as the day of the surgery itself. Don't hate them for it. Although it sounds counter-intuitive, the faster you can move around and walk, the faster your body will heal. Moving helps prevent post-surgical complications like blood clots or pneumonia.
2. Take your pain medicine, and take them on time. I have a high tolerance for pain and I avoid taking medication whenever I can--just part of my powers as superwoman. I stopped taking pain medicine a few days after each of my c-sections, even though I had enough prescription for a month. But my c-sections were a piece of cake compared to my sternotomy, which brought me down to my knees. I realized then that my surgeon had lied to me when he told me that the pain of sternotomy was comparable to a c-section. Duh, but of course I should have known better than to believe him. First of all, he is a man, therefore has never had a c-section and I bet he has never had a sternotomy, even though he is an expert in performing one. So I took all my pain medication and took them on time, and I needed every single dose in order to function properly. Don't try to be brave. You will need your pain meds especially if you want to get quality sleep at night. And sleep you must in order to heal.
3. Follow your discharge instructions. Don't lift anything heavier than 5 pounds for at least 6 weeks. Don't soak your incision in the shower. Call the doctor for signs of infection, like persistent pain, fever, swelling, discharge, etc. Of all these, I would say it is easy to forget the lifting restriction part. Although I was still sore, I would try to reach for things at arm's length, like items in the back of the fridge or across the kitchen sink. My chest muscles would then protest by sending an angry, sharp spasm and then I would be reminded that I am not strong enough for that yet.
4. Talk to your kids. Little kids need to know what mommy or daddy has been through. They are probably very scared and confused while you were in the hospital. Show them the incision and let them know you have an "owie" and won't be able to do some of the things you used to do for a while, like carry them, or put them on your lap. My two year old understood and that was a relief. Instead of asking me to carry him around nap time, he is content to lay down beside me in bed or the sofa until he falls asleep.
5. Eat sensibly. Remember the healthful food you stocked up before surgery? Well you need to remember to actually eat them and stick to a healthful, anti-inflammation diet while you are healing and, preferably, for the rest of your life. I ate fruit and veggies after surgery, alright, but I was not consistent. I was still drinking coffee, consuming candy, chips, pizza and cookies. I was still eating refined carbs and dairy, which did not help my MG. I was in denial. I regained the weight I lost since my first MG crisis, and I felt less than energetic. It didn't occur to me to overhaul my diet completely since I have been diagnosed with a chronic autoimmune disease. Sadly, it would take another MG crisis for me to realize this.
6. Patience, patience. Do not push yourself. This is my most important tip of all. I was doing so well after surgery that I had completely forgotten I was still chronically ill. I returned to my bad habits--I was still eating unhealthful food, staying up late, wearing high-heeled wedge sandals for crying out loud, when my legs could buckle anytime from muscle weakness, and even had the audacity to travel out of town in an exhausting and stressful road trip six weeks after surgery, in extreme heat and traffic, no less, without consulting my doctor. It was the perfect storm. I ended up in a full-blown MG crisis a few days after returning from my trip, so close to respiratory failure that I had to go to back to ICU. I was in the hospital again for 12 days, straining my already tired family and driving me to the brink of depression. While everyone recovers differently, make sure you take it easy before you do anything crazy. Get a thumbs up from your doctor before doing any kind of traveling. Listen to your body. Better be safe than sorry--a tired cliche, true, but a good one nevertheless. I know another person with MG who is already weight-lifting and doing marathons 8 weeks after surgery. Well, good for her, I'll just chill on the couch and write on my blog, thank you very much.
Recovery
Once again, no one person with MG is exactly the same as another and the same goes with how each person recovers after surgery. Although it has been thirteen weeks since mine and I am relatively pain-free, I still have funny, tugging sensations in my chest whenever I'd switch sides while sleeping and when I'd get up from bed.
Below is a daily or weekly description of my progress, just to give you a general idea of how long it takes to reach each little milestone. Be sure to congratulate yourself for every small victory because you deserve it.
Day 1 - Home from hospital. Still sore and groggy from anesthesia. I was still sleeping most of the day. I still had little or no appetite, ate mostly crackers and soup but I drank water constantly. Needed a shower seat for bathing. Had to get help from my husband to wash my hair as I could not extend my arms all the way over my head. Slept upright, almost at 45 degrees on the bed with tons of pillows to support my back, right arm and under my knees. Could only stay in this position the whole night for six weeks.
Day 2 to 3 -- Same as Day 1, but sleeping less during the day. Removed the dressing from chest tube wound at the end of Day 2. Appetite is back to normal on Day 3. Still painful to get in and out of bed. Used hug pillow to help with pain.
Day 4 -- Still needed help to undress for shower, but I could wash my hair by myself, although with some discomfort. Stopped using the shower seat. Still had soreness from each side of incision and had stiff, achy shoulders. The incision itself felt numb.
Day 5 - I was able to cook for the first time since coming home. Still could not reach inside the fridge, or cupboards, though.
Week 2 - I was able to do minor housework like sweeping. Bending was still hard. Had my post-surgery follow-up with my surgeon.
Week 3 - Amazingly, I was already able to swing a golf club while playing with my son in the back yard. My superwoman powers were coming back.
Week 4 - Tight feeling in incision area. Would try to gently stretch chest muscles to relieve tightness. Either side of incision is still sore, but life already seemed to return close to normal.
Week 5 - Can already push vacuum cleaner, but cannot carry it. Started taking pain medicine only as needed.
Week 6 - Felt almost normal that I forgot I was still sick with MG. Pushed myself too hard and went on a long road trip in 90-degree weather. Caution, do not do this! I was stubborn and didn't fully listen to my body. On the plus side, I could finally sleep on my side, but with a pillow to support by back.
Week 7 and 8 - Back in the hospital for trouble breathing. Stayed for a total of 12 days. Big sigh.
Week 8 - Back home and taking it super easy this time. Weaker because of MG. MG, they say, tends to get worse after thymus surgery, for about two years. But soreness from incision was much diminished. Rest rest rest. I overhauled my diet and finally quit caffeine, dairy and sweets. Cold turkey.
Week 9 onwards - Pretty much pain free at the incision site. I could sleep flat and turn on either side with a hug pillow for sleeping. There is still a weird pulling sensation inside my chest when ever I would get up from bed, as if my scar tissue inside is settling down due to gravity. But I am so used to it now, that I probably will miss the feeling when it finally goes away one day.
Week 12 - Can finally lift my son! But only for a few seconds. He is heavier, after all, and I am still weaker from my MG. But I've come a long way, baby.
Postscript
My incision used to look dark and crusty because of the glue, and when the glue finally rubbed off a few weeks ago, it has become a soft pink, like the shade of a rose petal or a delicate silk ribbon, and almost as pretty. I used to hide it when I'd go out for errands and doctor's appointments by wearing a scarf or a high-necked tee, but my clothes would rub it sore. So I finally decided I will not hide it anymore. I don't necessarily wear it proudly like a badge of honor, even though a good friend remarked that it makes me look like I finally have cleavage in my photographs, but I am not embarrassed to show it now either. I see it more as a gentle reminder of who I am now. Battered but not beaten. It's a reminder to myself that I am no longer in control, that I am no longer superwoman, and that it is time to let others be superheroes towards me for a change, and while that took some time to get used to, I have become absolutely fine with it.
References
1. Peter H.U. Lee and Atul A. Gawande, The number of surgical procedures in an American lifetime in 3 states, Journal of the American College of Surgeons, Volume 207, Issue 3, Supplement, September 2008, Pages S75
1. Peter H.U. Lee and Atul A. Gawande, The number of surgical procedures in an American lifetime in 3 states, Journal of the American College of Surgeons, Volume 207, Issue 3, Supplement, September 2008, Pages S75
2. Thomas G Weiser, Scott E Regenbogen, Katherine D Thompson, Alex B Haynes, Stuart R Lipsitz, William R Berry, Atul A Gawande.An estimation of the global volume of surgery: a modelling strategy based on available data., World Health Organization, http://www.who.int/surgery/global_volume_surgery.pdf
Thank you for posting this, I am having this surgery next week. I have not been diagnosed with MG, although I have a lot of the symptoms. They are removing the thymoma irregardless of MG, so the surgeon wants to wait until after to manage MG if I have it. I appreciate your candid honesty and the fact that I too relate myself to supermom, was worried that I wouldnt be able to do anything for weeks post op. I appreciate the hope and am happy I came across your blog. It is allowing me to relax more about my post op recovery and encouraged me to be mindful of giving myself the ability to take a break and rest as needed. I also am going to try the smoothy, it sounds delicious.
ReplyDeleteHello! I am glad you are finding this blog useful. Before my own surgery, I couldn't find a lot of useful information about other people's experiences online. How strange that you have not been diagnosed with MG even with the presence of a thymoma, or thymic tumor. Mine was huge, like the size of a plum. It has been six months since my surgery, and I am still symptomatic. But I have high hopes that I will feel much better in another six months or so. Best of luck to you! I will keep you in my prayers.
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