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Must Know Tip Before Major Surgery: A Cautionary Tale

Lyfebulb Family,

Most post surgery tips are very practical like how to apply bandages, when to take medication, or what foods to eat to avoid inflammation. My number one suggestion, although it may not be as obvious, is the most practical thing you can do. To know the whole story, let’s rewind to the first week of April 2018.

Just this past spring, right before I was set to have a double mastectomy/breast reconstruction, my iPhone went on the fritz with the newest update. It started to freeze on the regular, shut off at 60% battery, and send multiple texts to the wrong people. One must know thing about me- my phone is my bread and butter, continuing to this very day as Lyfebulb’s newest Social Media Marketing Manager. I love writing, designing, editing, all done with a finger tap or swipe. Most days you will find me at my desk with my phone permanently affixed to my hand. I swear, it’s for work.

Beyond the professional demands placed on my phone, I had two breasts chock full of strange phyllodes tumors, and a lot of worried friends and family trying to drop me a line. If they couldn’t reach me, or worse, if my clinicians couldn’t reach me, then it could become a matter of life or death!

Armed with a justifiable reason to put a dent in my next credit card statement, I waltzed into my phone carrier store and made a beeline for the iPhone X. Finally, I was back at the forefront of technology! Goodbye dropped calls, frozen home screens, and fading battery power. HELLO face recognition, the all glass screen, and 256 gigabytes of memory. I was thrilled and put at ease by my new phone all at once. My loved ones and doctors could now easily reach me through a reliable device, and I would have a life line to the rest of the world during my long recovery.

The big day finally came. After my surgery I spent three days in the hospital during which I was so sore I could barely use my arms. Then I was discharged and sent home to sleep in a medical grade recliner for a month. My partner set me up with a tray right in front of the TV so I could rest comfortably in my post-anesthesia-painkiller-induced stupor.

Now, if I can sneak in one small tip on post surgery binge worthy television it would be to gorge yourself on the Great British Bake Off. Between bouts of intense pain and sleep were blissful images of proving dough, chantilly cream, and chocolate drizzles. It was exactly what I needed. In my happily TV ever after, I indulged in endless GBBO marathons from the glamorous location of my small Brooklyn apartment, all while sitting in a medical chair with throw pillows duct taped over the armrests.

Then one day the buzzer sounded. In the first couple weeks after my surgery I had a number of visitors, but on this day I wasn’t expecting anyone. My partner buzzed them in and opened the front door. We waited, but nobody came, so he went downstairs to investigate and returned with a large box left by a delivery person. Inside this monstrosity of cardboard was approximately sixty dollars worth of cake decorating supplies.

Was this some kind of mistake, or had my great British fairy godmother answered my dreams? I went into my Amazon account orders and found that I was, in fact, the aspirational baking culprit. To add even more humor to my predicament, I found some pain-med induced plans to start a baking business as well, and me with zero pro baking experience typed this up brazenly into my iPhone notes. The drowsy half awake call was coming from inside the house folks, but I had no recollection of when it took place or how I made the payment.

I still didn’t have the strength to use my laptop- and definitely didn’t have the brain bandwidth to enter a complex password. It finally dawned on me later that day when my new phone opened without having to enter the old numeric combination. Thanks to my newfangled iPhone X, I confirmed the purchase without even one single clumsy thumb jab, but with my FACE.

As my cautionary tale comes to an end, I impart with you the pre-surgical wisdom to TURN OFF your Face ID purchasing privileges. Moreover, don’t let Alexa, Google, Siri, Watson, Cortana or any other shiny A.I. companions let you purchase something from the ether with your thumb print, your voice, or your face.Thankfully all I bought was cake decorating supplies. Now when I get some free time, I’ll have a brand new hobby to start up.

Should I start taking orders?

Helayne Kushner

If you have any tips you’d like to share, have any pitches for blog posts, or have any questions for Helayne, email us at ambassadors@lyfebulb.com!

 

How to Improve Your Recovery After Surgery

care giver

Surgery can be frightening for the patient and their loved ones, but once the procedure is over, there’s another stage to face which can be just as challenging. The recovery period will vary greatly depending on the circumstances, but in many cases, it can be helped along if certain steps are taken. Some people will find following their recovery plan difficult, but it’s important to follow all the advice you are given and to take care of yourself during the crucial time. To give yourself the best chance of a speedy and straightforward recovery, here are some important points to remember when recovering from surgery.

Stick to your doctor’s instructions

When you are discharged from the hospital, you will be given advice and instructions to follow. It’s important that you take these instructions seriously as they will have been provided for good reason. It may mean you can’t undertake certain physical activities or get your incision wet, or you may need to follow a course of medication and/or physical therapy.

Get plenty of rest

Our bodies need sleep to repair damage and recharge for the next day, so it’s important that you get plenty of rest. Create a comfortable and supportive sleeping environment that will aid in your recovery. You may want to consider investing in a latex or memory foam mattress depending on your medical needs. Compare the pros and cons of latex vs. memory foam mattresses before you make your choice.

Attend all of your follow-up appointments

Make sure you attend all of your follow-up appointments with your doctor. Even if you feel fine, you need to be checked over to ensure that your incision is healing at the expected rate and that you are not developing complications that you aren’t aware of, such as an infection. Your medication may also need to be reassessed on a regular basis.

Protect yourself from infection

Infection can be a major complication after surgery but is also simple to avoid. Wash your hands regularly and especially before you touch your incision.

Take care of your incision

Keep an eye on your incision by checking it multiple times a day. If you notice it is red or pink or there is pus, there may be a problem, and you should ask your doctor to check. If stitches or staples are loose, this is also an issue that needs resolving. Be careful when coughing, sneezing or going to the toilet if you have an incision in your abdomen as this can cause it to reopen. Apply pressure to the wound to prevent it from rupturing. However, you should not stop yourself from coughing as this can lead to severe illnesses like pneumonia. Finally, keep your incision clean according to your doctor’s instructions. In most cases, a gentle cleanse with soap and water is sufficient.

Eat a nutritious diet and stay hydrated

You may not feel very hungry after surgery, but your body needs fuel, i.e. nutrition and water to function at maximum capacity and heal as quickly as possible. You can find information online on the best foods for recovery, as well as those to avoid.

Manage your pain with medication

You need to manage your pain effectively after surgery as if you are in too much pain to cough, move, sleep, or eat you will slow your recovery significantly. Take your medication according to the doctor’s advice. If you feel that the medication is not effective, seek advice from your doctor before increasing the dosage or trying another medication.

 

IBD May Be a Beast, But It Is Worth Fighting

I was at the top of my game having just graduated college with a Wall Street career all lined up and BAM, just like that, the colitis hit.

At the tender age of 22, when my life was just supposed to be beginning, my life became a perpetual case of where’s the nearest bathroom and having to bolt to avoid accidents. Between wearing diapers and trying to date while popping pills and using enemas, I began to realize how tenuous life is. It was a scary proposition because my dad passed away at 39 years old from a wicked case of Crohn’s that turned into colorectal cancer, and his sister quickly followed suit. And here I was, barely awake from my first of 100+ colonoscopies, hearing the words ulcerations and inflammation thrown around. It was unnerving and terrifying all at once.

Today, 12 years, 20+ surgeries and hundreds of procedures later. I’m happy to say that I’m still alive and kicking. I continued working in investment banking, taking time off to mend from surgeries until the stress, the fatigue and constant flare-ups did me in enough times. A decade ago, after returning from my 24th birthday in Cancun, I developed a horrible case of food poisoning and I was never the same again. I took antibiotics, which gave me c.dificile, a debilitating infection caused by antibiotic overuse. It resulted in 15-20 bowel movements a day, watery diarrhea, nausea and dehydration.

And that c.diff subsequently brought about a never-ending colitis flare that lasted 8 years. I cried in my former gastroenterologist’s office as I had an accident in his hallway and as I continued to lose weight and along with it, my sense of self and personality. At the end of 2007, I was 135 lbs. By mid-2008, I had tried every medication and alternative treatment under the sun, lost 50 lbs., and was being fed by an intravenous PICC line in my arm. I was dying.

I was rushed to the hospital where my surgeon removed my colon on the 4th of July. As I found out later, he and his boss, the chair of colorectal surgery,

…were unsure I would survive the operation. Heck, I was certain I wouldn’t.

But I had no choice. I was told death was certain if I didn’t have surgery. As Independence Day came and went, I woke up alive and very thankful to no longer be dependent on a disease-ravaged colon. And overnight, I found myself a new bff, my stoma Snuffleupagus, as named by my ever-devoted husband.

It took about 2 months of receiving IV nutrition and antibiotics before I began to eat more than a morsel of food. And how can I forget spending my 25th birthday in the hospital with yet another bout of c. dificile? I recovered nearly 6 months later and went on to have some more surgeries so that my surgeon could fashion a j-shaped pouch from my small intestine, which would allow me to defecate like a normal person again. Before long, I developed pouchitis, a new brand of inflammation that hits in the j-pouch and causes IBD symptoms of bloody diarrhea 20 times a day.

After several months of on-again, off-again pouchitis, I was left on a rotation of antibiotics for a few years. That was until the pouch began to fistulize, or burrow holes into other organs. My diagnosis was changed from UC to Crohn’s. I developed a total of 5 rectovaginal abscesses that became full-fledged fistulae, which resulted in UTIs galore along with immense pain and bleeding, in addition to multiple surgeries. Along with it, I developed a whole host of extraintestinal joint and dermatologic manifestations of the Crohn’s.

To allow the fistulae to heal, I was yet again rushed to the operating table and was given a stoma. I was again fed by IV lines as I began to retry biologics; when none of them worked, I was told to have the pouch excised. I had exhausted all my options and fought so hard for 6 years to keep that pouch. I felt like I had failed.

My pouch was removed, and I was left with a large wound and a permanent ostomy. Except the wound never closed like it was supposed to. I bled for months and went for a second opinion at the Cleveland Clinic where I was told that the Crohn’s had continued, and pieces of j-pouch and rectum were still inside. There was a massive honeycomb-like abscess in my pelvis where the j-pouch once was. According to MRI reports, a pelvic fistula had formed and was headed for my spine. I was told it could paralyze me. Major corrective surgery was my only option. I was given a PICC line yet again to deliver IV antibiotics and restarted Adalimumab.

I went for a third opinion at Mayo Clinic where the surgeon wanted to try a new technique. He re-excised the pouch 3 more times so that no pieces of bowel would be left behind to cause the Crohn’s to spread. He left a wound the size of a small football and I was left with a wound VAC attached for 4 weeks thereafter. Every alternate day I had a procedure under sedation in my room to debride the wound. The VAC was pulled after a month and I was left with a 3-inch deep wound for my mom and husband to pack.

After such excruciating pain, I thought I was out of the woods, but another RV fistula was found, which was perplexing because I had no rectum left. It was just a hole, something I was told had only been seen twice before. My doctor prescribed antibiotics, 6-mp and a double dose of Ustekinumab, which was still in trials for Crohn’s. It took several months of misery, but the wound finally closed, and the fistula was untraceable.

Come 2016, the word “remission” was being thrown around for the first time in my life. And I didn’t know what to do with myself. When a disease snatches one’s womanhood, how does one begin to resurrect oneself?

Nevertheless, after 3 near-death experiences, I am thankful to be alive and for every single surgery and every single breath. Every time I have fallen, I have picked myself up higher than before. And that is my very own personal miracle and my greatest achievement to date. My medical staff, my friends and family and the Crohn’s and Colitis Foundation are my rocks, my backbones and a source of constant support. Every time I lose hope, they help me stay afloat.

A year and a half later, yes, I have 8 new chronic diagnoses to manage, but I refuse to go down without a fight. My battle with Crohn’s has given me a newfound appreciation for life, a joie de vivre, like no other. Not a single day goes by without me remembering how far I’ve come and how much life I have yet to live. I may not be able to work but I am able to volunteer in between health crises. Co-facilitating the Foundation’s Women’s Support Group has given me a voice, a platform to raise awareness for these awful diseases and help women like myself advocate for treatment and maintenance of care.

IBD may be a beast, but it is worth putting up a fight for your loved ones and most of all, for yourself.

IBD may derail our careers, educations and relationships but it cannot take away who we are at our core. We must keep on fighting the good fight and never lose hope.

Here I am today, continuing to fight in the memory of my late father, for my dear mother and husband as well as all the friends who have stood by me along the way. I fight for new treatments to be developed and for a cure someday. I fight for you and me, for all of us at the Crohn’s and Colitis Foundation.

A Personal Story of Struggle and Triumph over Mesothelioma

Mesothelioma is a devastating and aggressive form of cancer. It is most often caused by exposure to asbestos, a harmful natural mineral that was used for decades in a variety of applications. Getting a diagnosis of this type of cancer can feel like your world is ending; the prognosis is rarely good. There are hopeful stories, though, like that of Katherine Keys who was diagnosed with mesothelioma ten years ago and today is thriving and telling her story to give others hope.

Flu-Like Symptoms
Her story began when Katherine was 49 years old. She started to feel some persistent symptoms, like difficulty breathing, shortness of breath, a frequent cough, and chest pains. She thought she must have some type of respiratory infection, like the flu. But the symptoms just wouldn’t go away, and eventually she went to the emergency room where she ultimately got the diagnosis of stage I mesothelioma.

Mesothelioma is a cancer that attacks the mesothelium, the tissue lining the inside of the body and most organs. Katherine was diagnosed with the most common form of the disease, which affects the pleura, the part of the mesothelium that surrounds the lungs in the chest cavity. This is why her symptoms resembled those of an upper respiratory infection.

Katherine was luckier than most people with mesothelioma in that she got her diagnosis in stage I of the disease. Because the symptoms are so similar to more common illnesses, and because the cancer has a long latency period, many people never get an accurate diagnosis of mesothelioma until it is already advanced to a later stage. This makes it much more difficult to treat. Katherine, at stage I, still did not get a good prognosis from her doctors, but her early staging gave her hope that she could fight the cancer and possibly win.

Ready for a Fight
Determined to give the fight her all, Katherine realized she needed an ally and turned to MesotheliomaLaywerCenter.org. Here, victims of asbestos exposure and those who have received a mesothelioma diagnosis can find the support and guidance needed to fight back. The site provides resources to help inform patients about everything related to mesothelioma. It also provides access to medical experts who can provide the best treatment and legal experts who can provide services to help patients fight for compensation through settlements and asbestos trust funds.

With guidance from MesotheliomaLawyerCenter.org and access to medical teams that could provide her with the most advanced treatments, Katherine chose to go with the most aggressive attack against her cancer. She chose to undergo a very radical type of surgery that is risky and only performed by experienced surgeons. Called an extrapleural pneumonectomy, this surgery involves opening the chest cavity and removing one entire lung, all of the pleura surrounding that lung, part of the diaphragm, and even some of the lymph nodes. This extensive surgery is the best chance a mesothelioma patient has of achieving remission and Katherine was prepared to take the risks and hope for the best outcome.

After the surgery, Katherine had to face life with just one lung, but her treatment wasn’t over yet. To reduce the risk of the cancer recurring, she received radiation therapy five times a week for several months. Although she had also been scheduled to receive chemotherapy, the success of surgery and radiation mean she could avoid that treatment.

Recovery and Remission
Recovery from this aggressive line of treatment took Katherine months, and even after a year she still had limitations. In fact, she will always live with some physical limitations because she has only one lung. After her treatment Katherine’s doctors could not find any signs of cancer, but there was still a possibility of recurrence. Every month for several months she had to undergo blood tests, X-rays, PET scans, and other tests to confirm that the cancer had not come back.

Those check-ups were eventually reduced to every two months, three months, six months, and then once a year. The cancer never came back. After one year Katherine was thrilled to be cancer-free. Ten years later, she celebrates life like never before because she is still cancer-free.

Katherine beat mesothelioma, not something that many people can say. She credits her survival to her own hope and optimism, her amazing medical team, the love and support of her family, and the resources she received from MesotheliomaLawyerCenter.org. Now, as a mesothelioma survivor, Katherine relishes having time with her family, but she also loves telling her story and bringing hope to other people who are going through the same struggle.

Pancreas 2.0

I am fortunate to have been SICK enough to be eligible for a pancreas transplant, BUT the surgery itself and the life-long immunosuppressive therapy I will have to undergo to keep my body from rejecting the foreign organ, were huge risks to my very being.In fact, there was a 10 % mortality rate in the surgery, and each day I use immunosuppressive therapy puts me at a greater risk for cancer or serious infections.This was evidenced by my recent fight against sepsis after contracting salmonella while on vacation in the Dominican Republic.

While the surgery I underwent was dangerous and the immunosuppressive therapy holds risks, it was well worth the struggle, compared to the risks of not having the surgery. Without surgery, my Type 1 Diabetes placed me at a risk of not waking up from a normal night’s sleep, passing out while driving my car, exercising, or just walking on the beach…

I had so called “hypoglycemic unawareness”, a condition which often happens after many years with diabetes, and makes the person vulnerable to lows in sugar because they cannot feel the warning signs. I also had late-stage complications of diabetes, including kidney failure and eye disease, requiring a kidney transplant to survive, and multiple surgeries to prevent blindness. Due to my life-saving kidney transplant, I was already on immunosuppressive therapy, making the decision to go forward with the pancreas transplant easier.

I am a so-called beta version of the Cure – this means that my treatment, the pancreas transplant, was experimental and not applicable for everyone. But the outcome has been incredible and I can now convey to others how they would feel if they could experience perfect pancreatic function back. The more advanced version of this treatment may involve the use of beta cells that are infused through the liver, but it would still require immunosuppressive treatment.

Though complicated, at least this form of treatment would not pose the risks surgery entails. In my mind, the 2.0 version is cells that are grown in abundance in vitro, expanding the supply. However, these cells need to be protected against the immune system and not require the person to use immunosuppressive drugs. Companies such as JNJ and San Diego based Viacyte are working on this technology. Just recently, a fantastic scientist from Harvard took a big step forward. Dr Doug Melton is a Father of two children with Type 1 Diabetes. He changed his scientific path and dedicated his life to finding a cure. Now, he may be onto something. He has developed a way to grow embryonic stem cells in culture into insulin-producing beta cells that can be infused back into the person needing them. Check out his work here.

http://news.harvard.edu/gazette/story/2014/10/giant-leap-against-diabetes/

My current life without insulin injections, fears of going low, or having late-stage complications proves that it is worth the effort and money to bring Dr. Melton’s science to the market and allow for all people with diabetes to live normally and freely.

Giving Thanks

Today is thanksgiving, a day dedicated to family, giving back and appreciating what we have.
My family always prepares a big feast and then at the table, we all note what we are most grateful for this year. In my case there have been five years of thanking my father, the doctors and nurses and of course the family who decided to donate their deceased daughter’s pancreas to me. My father’s kidney saved my life while the young woman’s pancreas made my life worth living. I cannot believe my fortune and each time I want to complain about small stuff I step back and rethink my priorities…..
Our most important gift is life and health and our primary focus should be on this. Money, success, power and victories mean nothing if we are sick and we hurt.
So this year, I will yet again thank the people who have given me life, returned my health and I will add one more thought – the man in my life who has shown enormous love and support which have enabled me to let go just a little of my control and reliance on my immediate family. He has saved my life a few times already and he never makes my situation seem to be a burden for him, but a part of me and thus a part of our relationship.
Happy thanksgiving!!
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