In honor of Neuropathy Awareness Week May 14-18, 2012

I’m reposting my May 2011 blog post  ’When Life Gets Messy: How I Handled an Adverse Drug Reaction (Side Effect Neuropathy)‘

Note: I am NOT a paid representative for the product mentioned in my post, but I am sharing my experience as an advocate to hopefully help others in a similar position.

When I was thinking about this new blog, I thought to myself the title should be “WHEN LIFE GETS MESSY”.

When Life Gets Messy: Adverse Drug Reactions, I Was Treated For A UTI and Woke Up Paralyzed On One Side

I was out one evening for dinner with my youngest daughter and her close friend and her mother. We were all having a nice meal and enjoying one another’s company. But I felt funny and knew something was wrong so I excused myself and went to the ladies room. I found that I was bleeding excessively and knew immediately it was a urinary tract infection (UTI). You see I am no stranger to UTI’s since this is another side effect I encountered from post-radiation burn. I went back out and whispered in my daughter’s ear that I needed to go to the hospital that I had a UTI and so politely excused ourselves without alarming our dinner companions.

First let me back up a little and explain that ten years after my surgery and radiation treatments I discovered yet another effect of the radiation burn, I was diagnosed with lymphedema in one leg (http://en.wikipedia.org/wiki/Lymphedema). I learned to manage this by being a fighter, a survivor, a woman determined to live life to its fullest. I accomplish this by a daily combination of compression pump therapy, leg wrapping, compression stockings, elevating my legs, and specialized lymphatic massage therapy.

Back to this particular evening which was about five years ago when I got to the hospital they immediately began to treat me for a UTI, wanting to stop the bleeding which was excessive I was given a strong dose of Leviquin through an IV drip. It was odd because my family thought this might be the drug I took orally a year prior and had a negative reaction in the form of seizures but in the moment we couldn’t recall.

The Levaquin stopped the bleeding immediately but the next day, I woke up paralyzed in one leg. We later realized that this was in fact the same drug that I took in a much lower dose orally and now at a stronger higher dose IV it resulted in a more severe adverse reaction causing Neuropathy in my weakest limb, the leg with lymphedema. It was so devastating to wake up and not be able to stand. The pain was so severe and I screamed and cried for a long time until they regulated my meds.

After several months, I had regained some mobility but due to Gabapentin Rx treatment. It took away a lot of the pain, but still causes increased numbness, instability, and poor balance. I was determined over the last few years to search for the right treatment. It’s a funny thing my daughter actually found this treatment early on when I was first diagnosed but when we asked my doctors and case manager they said there are so many treatment systems that are not FDA approved and they advised me against it.

But I am so pleased that my daughter and I were so persistent. Several months ago my daughter noticed that the Cancer Treatment Centers of America (CTCA) uses this same treatment system which I noted on their site under post-colorectal cancer survivors treatment and neuropathy. The system was still too costly at nearly $2000 plus. The suggestions I found through my research were that this treatment should be coupled with therapy which meant co-pays on top of the initial cost. But oh how God is good. We prayed that he would make a way that would enable me to afford to purchase the system. As we continued to research via the web, read books and forums to our surprise the system’s website had a special offer the price was half price through their Canadian vendor for a limited time. I purchased the ReBuilder Treatment System (http://www.rebuildermedical.com). Since I’ve started using it, I’ve regained movement in my toes, which were previously numb and lifeless. I can now feel temperatures again, and I even walk better at times without my cane though I am still careful! The greatest result from this treatment is that it has virtually eliminated all of the painful neuropathy symptoms. I am so grateful to God for this miracle and for finally gaining some relief.

I highly recommend investigating if you have neuropathy to determine whether or not this treatment is right for you. It is also covered up to 80% by Medicare.

I am now pursuing measures to avoid future poly pharmacy adverse drug reactions. I had a negative reaction to in the past but didn’t realize at the time of my medical emergency. What happened at the hospital may have been avoided if we were able to identify this medication as something I had adversely responded to in the past.

Questions To Ask Your Doctor About Neuropathy (link)
Alternate Treatment Options: ReBuilder System (click here medicare and insurance form Original Medicare pays 80%. If you have Medicare and a supplemental plan, you may be eligible for 100% coverage) can help eliminate the painful symptoms of peripheral neuropathy (This treatment worked for me). ‘Canadian vendor’, link to www.ReBuilderMedical.ca Note from the vendor: “The 2407 model offer has a 30 day money back guarantee in North America. Purchasing through our site has become a viable option for those who are unable to get insurance or Medicare coverage, or for those who wish to have the 2407 model, which MediCare does not cover. All orders are shipped from the manufacturer in Charles Town, West Virginia.  In an effort to make the unit more available to those who cannot afford it, we have also been able to reduce the price of the 300 model basic package to about $500.” Please write to me to request special coupon code to save 10% off the purchase of a ReBuilder 2407 system from now through May 1, 2012.

Discussing Side Effects with Your Physician
Another thing I’ve learned are many times doctors aren’t familiar or don’t necessarily agree with all of the side effects listed on official drug brand website.

Its important to document any side effects you have to medications/treatments and make your doctor aware. Not disclosing something to your doctor can be harmful.

Healthcare treatment data mining sites like Cure Together http://curetogether.com/ can give you insight on success of treatments categorized by disease and patient response/outcome to treatments.

You might also referr to reliable sites like http://health.nih.gov for helpful literature.

I had a doctor wanted to prescribe a medication that is now in litigation for sever side effects. Glad I decided against it and found another option that worked well for me with no side effects. You can also referr to FDA medication guidelines found on official pharma rx site. (e.g. Levaquin http://www.levaquin.com/sites/default/files/pdf/Levaquin%20Med%20Guide.pdf#zoom=100)

Today I am so grateful I continue to see improvement because I wouldn’t settle for mediocre. I keep my mind set to live life to its fullest every day! I don’t think about or worry about next week. I choose to live today for today! When I get up every day I ask my God to be my strength and when I can’t walk he is my legs. I want to be the VOICE for those who can’t fight. I want them to WIN like I am a WINNER. LIFE IS MESSY at times but we can choose to clean up the mess when it comes our way.

With love and God’s Blessings,

Dee Dee
Email Me: littledeet@yahoo.com
E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.

Disclaimer Chat With Dee Dee

 

 

They are my medical records; so why are they so hard to recover?

Co-authored post Dee Dee and Stephanie

I am not a skeptic-honestly!  However, my experience leads me to believe the current system is inefficient.

I live seasonally in two different states which makes it necessary to keep my medical records current. To avoid adverse drug reactions from polypharmacy I need share copies of my records with each of the multi-prescribing physicians across the miles.

I sent two letters in writing with my signature, ID and specific instructions of which records I was requesting to which doctors I wanted copies sent. Letters were signed for since I sent them certified/return receipt. However, we never heard or received the copies I requested for my own personal records.

. How do I request copies of my records?

Typically you should be able to write a letter to your doctor including the following (excerpts from about.com “How to Request Your Medical Records”:

• your name, including your maiden name (if applicable)
• Social Security number/ID number
• date of birth
• address and phone number
• e-mail address
• record(s) being requested
• date(s) of service (months and years under the doctor’s care)
• signature
• delivery option (whether you prefer to pick up, fax, e-mail, etc.)
• make a point to request a copy of your records at each doctor’s visit.
• note: there may be a per page copy fee charged (e.g., $0.75 a page). If you have financial limitations and cannot afford to pay for copies of your medical records, make a notation in your request letter that ‘I cannot afford to pay’.
• NOTE: Diagnostic lab test records, for such tests as blood tests, CT scans, x-rays, mammograms or others, should be requested from the doctor who ordered them, or your primary care physician. In most states, the lab will not provide them to you directly.

So why then did it take a trip to see the doctor and a visit to the hospital to get copies of my records?

1. Medical office staff are in inundated with work
2. There is a per page copy fee
3. You may not have been specific enough about which records you need released. There may be too many notes in your file to send the entire record along to another doctor.
4. You need to call or visit the office in follow-up to your written request.

Although EMR (electronic medical records) are gaining in popularity and availability in both doctor’s office and hospitals, there are still many flaws in the system. In my experience, the best method for obtaining and keeping your records is to request a copy at the time of each office visit and/or hospital stay.

God’s blessings,
Dee Dee & Stephanie

 

Speak encouraging reaffirming words; the hearing is often still intact when the patient is unconscious

My husband can attest that mind; spirit and emotions are essential for recovery. I recall my spouse and family rallying around me with reaffirming words, praying, singing, reading scripture versus and even when I was in the ICU and/or unconscious for other reasons I could still hear. The wonderful thing is my husband knew this, and he felt that it was critical to remain positive. I thank him for this.

I’m speaking to anyone visiting a loved one who is maybe in ICU or not coherent for whatever reason. Please remember your voices and words can still be heard. Stay positive and be a part of the healing.

 

Colorectal Cancer Awareness Month March 2012

 If more than ½ of the diseases are preventable (diet, lifestyle, testing and early diagnosis), why aren’t we taking action?

First I WAS TOO SCARED: If I only knew signs of irregularity like bright red spots or dark “tarry” stools was a sign of blood in the stool. I didn’t notice the problem until I was literally bleeding with each bowel movement. This went on for quite some time and I was too embarrassed and too scared to go to a doctor.
Then I was TOO SCARED NOT TO SEE A DOCTOR: The pain was so severe like a piercing knife through my spine I knew something was wrong. My gynecologist said to me the blood was too excessive and was going on for far too long and was certain it was not related to my nerves. He gave me the name of a proctologist to make an appointment for a colonoscopy and that’s how they found the polyp. As a result, my surgery warranted an irreversible colostomy. After enduring 22 radiation treatments only lasting 22 seconds each session, this surgery lead to an ileostomy, due to post-radiation burn and other post-surgery complications.  My doctor told me if I would have only come to him when the symptoms first occurred he could have removed the polyp and we would have avoided all the rest. If only there was a recall button.

 

TAKE ACTION, ask your primary care doctor for a Fecal Occult Blood Test (FOBT)[v] which can detect or prevent cancer long before the symptoms occur. Make your health a number one priority. You’re worth it and your family and friends are worth it!

If you are age 50 and older the prevent cancer foundation recommends the following screening[iii]:

• Colonoscopy: Every 10 years
• Virtual colonoscopy: Every 5 years
• Flexible sigmoidoscopy: Every 5 years
• Double-contrast barium enema: Every 5 years

Screening intervals for tests that mainly find cancer:

• Fecal occult blood test (FOBT): Every year
• Fecal immunochemical test (FIT): Every year
• Stool DNA test (sDNA): Ask your health care professional

My body had brought me to a point that doing daily activities became too difficult because of the severe pain. I urge you to please take action and control of your health. Regular screenings will greatly increase the early detection of colon polyps which can ultimately SAVE your life!

With love and God’s Blessings,

Dee Dee Email Me: littledeet@yahoo.com E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages)stephanie@gccrepair.com (who happens to be my daughter).

Disclaimer Chat With Dee Dee

 

Let’s help each other figure it out together

Honor and Privilege starts with using the gifts and ones experiences in life to help others.

If the most effective tool in medicine is communication, I believe starting and continuing the conversation about prevention is key. After all, there’s no recall button on cancer.

What an honor and privilege to have the opportunity to speak at the Luke Air Force Base in Glendale, AZ. I’ve been invited today March 7, 2012 to share my colorectal cancer survivor story to raise awareness and educate attendees regarding colorectal cancer and prevention.

I pray that sharing my real-life experience might inspire someone to get screened.

With love and God’s Blessings,

Dee Dee

Email Me: littledeet@yahoo.com

E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.

Disclaimer Chat With Dee Dee

 

Guest Blog Post 8: A Lesson in Gratitude and Loss (by Alvina Lopez)

It is another opportunity for me to share a guest post from a fellow blogger, Alvina Lopez. She wrote to me wanting to share something that aligned with my desire to bring hope to those who are facing difficult situations. Yes this is another difficult topic to cover, but I appreciate her insight into loss.

A friend of mine, Ann Wilson, wrote a guest article on change and what happens when it occurs. She very wisely said we need to get to know the Lord while times are good because when times get tough you won’t have the time! We have a choice to fight and rebel what God had done or to accept it and have hope.

I recently experienced a loss of a dear beloved family member. He is a man of God and leaves a wonderful legacy of faith and hope behind for family and friends. We mourn his loss, but rejoice as he has finally met Jesus face-to-face. He is home!

Guest Blog Post 8: A Lesson in Gratitude on Death’s Doorstep (by Alvina Lopez) slightly modified by Chat With Dee Dee Blog. A very dear friend of mine recently died of cancer.  To the very last second he was the bravest soul I’d ever known, and also had probably the healthiest sense of humor I’ve ever known.  On one of my last visits, he told me a story that I carry with me to this day as a lesson in gratitude, even in the gravest situations.  This was the story, as closely as I can retell it: The chemo had already taken my hair.  My family took it as a sign that I was giving in, slowly being defeated by the hungry disease, but I thought I looked dashing, and that I bore a striking resemblance to Bruce Willis, even Ben Kingsley at the right angle.  What bothered me about being bald was more that I couldn’t tell where my forehead stopped and my scalp began.  I would slowly slide my finger from my brow to the top of my head, holding it in place when I thought I had found the threshold, and then lean in my bed toward the vanity in the entryway to my room to check whether I had got it or not.  Most times I did not.  My finger would be halfway up my head, or still in the middle of my forehead.  So that’s one thing I took for granted: a hairline. And then the cancer accelerated like some drug induced getaway driver—doctors call this metastasis.  When I told my mother she complained. “How can this happen to you? You’re a good person!” I tried reminding her that God had offered Job to Satan because he was such a good servant. My point was that bad things happen to good people.  She did not take it well. So the family planned a visit, stormed the hospital, brought fudge and a weird balloon that wasn’t quite a dog or a horse.  They crowded in the room and cried so hard I thought a flock of geese had migrated into my room.  My wife sat on the bed, embarrassed, holding my hand.  Somebody, probably Uncle Matthias, started singing “If Thou But Suffer God to Guide Thee,” and the whole troop joined in.  Halfway through I leaned over to see if I had found the forehead threshold with my finger.  They’d never been any good at coming to terms with death.  Not that any of us are.  But as they stood there sob-singing hymns, I realized how grateful I was that they were stalwart and stubborn enough to meet death on its doorstep.  Recalcitrant and obnoxious as they could be, my family had metaphorically packed their bags, knowing full well where the train would take them, and had boarded it anyhow — and that is a blessing too profound for words. Once quiet and calm finally settled over them, I looked at their raw faces, feeling happier than I’d ever felt.  By-line: Alvina Lopez is a freelance writer and blog junkie, who blogs about accredited online colleges. She welcomes your comments at her email Id: alvina.lopez @gmail.com.

 

posture speaks volumes

It’s interesting how clearly body language communicates our response to what someone is saying or to a situation.

Dee Dee – Although it wasn’t communicated verbally, I knew the news about my diagnosis wasn’t what I wanted to hear. The doctor came into my room after my colonoscopy exam and stood at the foot of my bed with his head drooped down. His body language said it all. The doctor and I had hit it off from the first moment I met him. Those who know me can tell you that I love people and make friends very easily. So no … it wasn’t strange that I would make a friend in my proctologist believe it or not. To make delivering the bad news easier on him, I said to the doctor, I have cancer don’t I? He was still looking down and shook his head yes. I immediately cried, no sobbed uncontrollably. He continued to talk, but I don’t remember one word he said. Just about everything was racing through my mind at the time. I thought I would die. My children… how would they handle the news? Finally, I thought I heard a voice saying wait listen to what I’m saying … it was the doctor saying it’s not over its operable. I finally stopped sobbing and started to listen.

Stephanie – I watched a video this week on the topic of Minimally Disruptive Medicine by Victor Montori, M.D., Mayo Clinic http://youtu.be/flcRKdoaiVk. In his presentation, he spoke about the importance of doctor’s picking up on queues that patients give with their body language. Doctor’s often become frustrated when patients don’t comply with their medical advice and/or fail to follow prescription guidelines and or referrals to specialists. Lack of compliance is usually not a result of laziness or lack of esteem for their professional opinion. The truth is that patients often face a number of external disturbances that affect their ability to follow instructions from their doctor.  The disruption in the treatment plan can relate to domestic roles, financial burdens, inability to take that much time off of work, and/or limited literacy on how much (what dosage) and how frequent (what time and how often) they are meant to take their prescription during the day.

Dr. Montori’s presentation using a fabricated patient’s case was very astute. In his message, domestic responsibilities (his family was depending on him to carry the load) were the cause of non-compliance. You see his daughter had recently experienced a loss and moved in with him and his wife bringing her three kids along. He had an obligation to work and carry the financial burden. In order for him to comply with the doctor’s orders a number of things would need to occur. He would need to get a ride to a dietician, take off of work, see an endocrinologist about his obesity and high cholesterol, he needs to avoid salt, fats, carbs, he needs to take and manage prescriptions for diabetes and hypertension which make him dizzy and depressed. He needs to ask his wife to check the condition of his feet because he’s obese and can’t see them properly. He also needs to check his sugar. He has lower back pain, neuropathy and should be evaluated by a podiatrist. Treating these symptoms means more time off work and the patient couldn’t afford to do this. He is in pain all the time and he can’t sleep. His work load is increasing. He has deadlines at work and has to take work home to perform and keep his numbers up. He’s worried about his company going under. If his company fails, he will lose his insurance and likely go into debt. If he’s not able to pay his mortgage, he’ll eventually lose his home. Unfortunately, the program the doctor has prescribed doesn’t FIT into the context of all that is going on in this patient’s life.

When the patient finally returns to see the doctor, non-compliance is interpreted as failure, laziness or non-cooperation. The doctor does not recognize all of the surrounding circumstances, but identifies the breakdown as a lack of effort on the patient’s behalf.

Dr. Montori’s suggestion to adopt a more realistic treatment plan to fit the patient’s lifestyle. Instead, the doctor typically intensifies the treatment regimen when faced with non-compliance – adamantly insisting the patient needs more treatment. As you know, this leaves us, the patient, shifting towards self-management of our care. As patient’s we often frequently go to other patients to ask for help. After all, they can relate to our point of view and share what’s worked or hasn’t from their own perspective.  Dr. Montori suggests ‘minimally disruptive medicine’ as a needed change for the future care coordination. By measuring key areas that help focus to turning towards the goals that matter : burden of the treatment; coordination of care; comorbidity (presence of one or more disorders/disease) in clinical evidence and guidelines; and prioritizing from the patient’s perspective.

I will watch with great interest and hope more doctors will adapt to treating patients using Minimally Disruptive Medicine.

 

Call to Action: Ostomy Products for the Uninsured (Because Ostomy Supplies are a necessity for living not a luxury)

This is a post I wrote a while back. I’d like to repost this important message today to advocate for prevention of colon cancer and to bring awareness about an organization that is giving back to others in a big way. Thanks to all the ladies at non-profit organization OstoGroup.

Why would you want to respond to this call to action?

Because Ostomy Supplies are a necessity for living not a luxury.

Osto Group Mission: To meet the needs of those who have fallen on hard times by providing them with quality supplies and the necessities for living. In the course of accomplishing this task, we will never diminish the value of a person or the potential that they hold. No one will ever be turned away!
877-678-6690

A HAND UP NOT A HAND OUT FOR OSTOMY PATIENTS’ NATIONWIDE
Often treatment of colorectal cancer will warrant a temporary or permanent colostomy/ileostomy (an ostomy is a surgical opening to the intestines) which requires a wide range of medical supplies. Ostomy supplies are not a choice; you can’t live without them and the monthly expenses are in the hundreds. With the difficult state of the economy and many people facing job loss and lack of insurance it makes me wonder how ostomy patients are purchasing their supplies. Thanks to this wonderful group of women running the ‘Osto Group’ a non-profit organization that offers ostomy supplies to patients nationwide for those who do not have medical insurance or their insurance doesn’t cover their supplies. One person shared, “When we lost insurance coverage, we felt we were lost. Also, there isn’t an extra $200/mo. in our budget. I haven’t been able to find any meaningful employment for more than 12 months. These unfortunate ones actually use common household supplies and tape in place of ostomy supplies! That sounds bad, doesn’t it? Well this is reality for some”. (Summarized from a testimonial letter written to Osto Group).

HOW CAN YOU HELP THE OSTO GROUP?

1.PRAYER: First we ask for your prayers for the Osto Group so that they can continue to provide this

Ostomy Donations from the kindness and generosity of people like you!

needed support to ostomates in the United States who do not have insurance or have insufficient insurance which does not cover their ostomy supplies

2. OSTOMY DONATIONS: Osto Group, 15070 Corporate Rd. N, Jupiter, FL 33478
The following items are what Osto Group is looking for in the way of donated material:

• Hollister Products – Wafers and Pouches -  Skin barriers, cleansers and wipes, M – 9.
• Convatec Products – Wafers and Pouches – Please label with Manufacturers part number if they are out of their box if you can. Skin barriers, Eakin Seals and Stoma Paste.
• Coloplast Products – Wafers and Pouches – Urostomy Pouches.
• Nu Hope or any brand of ostomy product, tail closures, sponges, wipes, scissors, bandages, as long as these are packaged intact and in good condition.

3. FINANCIAL DONATIONS: $5, $10 and up no donation is too small!
Osto Group, corporate office 4521 PGA Blvd #228, Palm Beach Gardens, FL 33418-3997. Questions Call The Osto Group: 877-678-6690. Since the Osto Group is a 501(c)(3) organization they will provide a receipt for each donation for tax purposes.

4. SPREAD THE WORD ABOUT THE BENEFITS OF THE OSTO GROUP (http://www.ostogroup.org/ 877-678-6690).

Thank you for all of your support.

 

Living with Lymphedema: How it impacts life and what you can do about it now

Immediate Onset of Symptoms
And like that, about 10 years after my colorectal cancer surgery a new side effect developed. I woke up one morning and my leg was swollen like a balloon. Since it was instantaneous we didn’t even consider it being related to my cancer surgery or radiation at that time. I remember it was summer and I was coming home from a weekend in the mountains. I recall thinking I must have been bitten by a spider, but, when the swelling subsided we thought it had resolved on its own.

My 1^st Diagnosis
Later that summer we headed down the shore to enjoy time at the beach. It never happened before but something about the sand touching my foot it became immediately irritated and my leg became very red and swollen and achy. We decided to go to the emergency room and they examined me and the first diagnosis I received was cellulites. There is lack of awareness and understanding about secondary lymphedema. I was never educated as a patient that I might experience an immediate onset of symptoms in secondary lymphedema. If I had been informed about the symptoms of the condition I would have been properly diagnosed and treated early on. However, since I wasn’t aware of this side effect it was many years before I started receiving treatment for lymphedema.

Living with Edema
During the early stages my leg was still manageable; when my leg would swell and/or ache I would simply elevate it until the swelling would subside. It never really hindered my mobility in any way during the early years.

I remember my youngest daughter was still in grammar school at that time. I have so many fond memories of that time. I was the President of the home school association and for a number of years I was still very active despite the swelling. It was interesting how it didn’t slow me down. I know God gave me the strength to continue to have the energy and ability run at a time when my daughter was young and needed me. It really warms heart when I think of those times and coming alongside the others in the home school association. Some of the great projects we accomplished as a group were so rewarding. I share these stories to add emphasis on just how active I was during the early onset of lymphedema. As some of you might have realized by now I’m not shy and I don’t mind using a little chutzpah[i] when necessary ([i] chutzpah is a Yiddish word for assertiveness. Every now and again I like to throw in a Yiddish word I learned from my coworkers and customers during my many years as a hair stylist). I was told it was unheard of before my term as President of the home school association, but when I became busy at the school with the number of activities and fundraising events I thought to myself I needed my own office at the school. I chuckle when I think of this memory. So I scouted the school and set-up my H.Q. in one of the vacant offices. I remember the principle being taken aback that I had occupied an office space, but she never did ask me to leave (smile). My team and I had been very involved in fund raising for the school and I know that administration and teachers had truly appreciated our help. We did a variety of events from fashion shows, dinners, tricky trays and we even did a magic show once where the magician released doves off of the stage at the end. Quite a show! These were truly great times and fantastic way to raise money for our non-profit private school. I really believe God gave me those experiences so I would have these skills to later use in my ministry.

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 

Years Later I Received the Diagnosis – Lymphedema
By then, as my leg continued to swell and tighten and felt heavier and became achier, I decided to seek another opinion. I finally saw a doctor who took one look at me and said yep you have lymphedema. Honestly I don’t recall what tests he performed at that time but I do remember that I started to get specialized help from that point forward. As a result the new diagnosis, they sent me for specialized physical therapy for lymphedema. This included lymphatic massage, leg wrapping and I was fitted for a compression stocking. My case manager helped me to order my pneumatic compression pump which they also used in therapy so I would have a way to continue with treating my leg on an ongoing basis.   

So What’s Lymphedema Anyway?
I’ll use excerpts from a combination of resources I found to accurately describe what it is and how the lymph system works.

Excerpt from American Physical Therapy Association (APTA), “The lymphatic system collects excess fluid and proteins (lymph) from the body tissues and carries them back to the bloodstream. Lymph is moved slowly through larger and larger lymphatic vessels and passes through small bean-shaped structures called lymph nodes. Edema, or swelling, may occur when there is an increase in the amount of fluid, proteins, and other substances in the body tissues. It’s also known as lymphatic obstruction, is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. – From Wikipedia. Statistics indicate, a conservative estimate, that there may be 1-2 million people in the United States with some form of primary lymphedema and two to three million with secondary lymphedema.

What are the Causes of lymphedema? In cancer patients several leading factors of secondary lymphedema is the result of radiation damage to the lymph nodes and/or the lymph system and/or scar tissue.

What are the symptoms lymphedema?

1. Unexplained swelling
2. Unexplained aching
3. Heaviness in the limb (for me when my leg swells it feels like it’s in a cement block)
4. Tightness and weakness” 

What Can I Do Now If I’m experiencing These Symptoms?
Unfortunately there is no cure for lymphedema, but it can and should be treated to avoid further complications as early as possible. I didn’t know about the treatment options available at the time I was diagnosed so it’s important to me to share this with others.

The Mayo Clinic gives an outline and explanation of methods used to properly diagnose lymphedema condition. “The doctor will discuss your condition, examine the limb for swelling and redness and measure the limb. Doctors with special expertise in diagnosis and treating lymphedema may perform some of the following tests:

• Computerized tomography (CT) scans. A CT scan produces a series of X-rays to create a detailed image of your body. Your doctor may use this test to see sections of the lymphatic system that may be blocked (obstructed).
• Echocardiogram. An echocardiogram uses sound waves (ultrasound) to produce detailed images of your heart and blood vessels. An echocardiogram helps determine the size of your heart, how your heart valves are working and how well your heart is pumping. Your doctor uses the echocardiogram to detect heart or blood vessel problems, including obstructions in blood vessels.
• Genetic tests. Genetic tests may be performed to test for congenital lymphedema (lymphedema present at birth).
• Lymphoscintigraphy. In this test, your doctor injects a radionuclide dye under your skin to look at the flow of lymphatic fluid in your limbs. Your doctor scans you with a machine at several time intervals, which shows the dye traveling through your lymphatic system and lymph nodes. This test reveals blockages in your lymphatic system.
• Magnetic resonance imaging (MRI). An MRI scan uses magnetic fields and radio waves to create detailed images of your body’s tissues. Your doctor may infuse a contrast agent into a vein in your lymphatic system to see your lymphatic system more clearly on the MRI.”

Banner Health lists the following Treatment Options:

• “Manual lymph drainage massage to release protein molecules from the tissue and move them along with the excess fluid into the lymphatic capillaries and out of the limb with a noninvasive, technical, therapy technique.
• Compression bandaging of the limb to provide a firm external non-elastic support to tissue, which acts as a counter force to muscle contraction and, thus, promote lymphatic pumping during even the slightest muscle contraction.
• Comprehensive fitness program, including flexibility, strengthening and aerobic activities to enhance the lymph drainage.
• Lymphedema education: Review key points for good health while living with lymphedema.
• Pneumatic Compression Pump A pneumatic compression device such as the lymphedema pump consists of a garment or sleeve that is wrapped around the affected limb, and a pneumatic pump that inflates the sleeve with compressed air. The sleeve is inflated and deflated intermittently at varying intervals and pressures.”

I’m always exploring new ways for managing my Lymphedema treatment. More recently I’ve started using a brace on my ankle to provide better support. Secondary lymphedema can weaken the muscle tone and strength over time and a little support can be helpful. I’m also exploring the C-Boot Elastic.  This is the first mobile intermittent pneumatic compression (IPC). Over the years my mobility has decreased especially in the summer months due to the humidity the swelling increases and the leg becomes heavier and achy. Lymphedema weakens the muscles making it difficult for me to support my body weight especially when the swelling increases. I brought the information to my primary care physician; however, since it is not her area of expertise she wasn’t able to measure me or write a script for the boot. I’ve yet to find a doctor who specializes in treating lymphedema to request help with measurement and ordering the c-boot. The cost is in the upwards of $2K so this is still a work in progress for me.

Another great resource to plug into is The National Lymphedema Network (NLN) http://www.lymphnet.org/, send an e-mail: nln@lymphnet.org  or call their Hotline: 1-800-541-3259. The site offers a variety of resources for both the patient and doctor. You can search for treatment or support groups, find a pen pal, and learn about clinical trials and much more.

My friends please write to me if you are feeling or experiencing something similar.  I’d love to hear from you. I didn’t have anyone who could relate to me at the time and I don’t want that for you.  Please send me an email or reach out to me via Facebook or Twitter.

With love and God’s Blessings,

Dee Dee

Email Me: littledeet@yahoo.com

E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.

Disclaimer Chat With Dee Dee

References:

http://www.oncologypt.org/mbrs/factsheets/LymphedemaFactSheetFinal.pdf

http://en.wikipedia.org/wiki/Lymphedema

http://www.lymphedemapeople.com/thesite/Arm_and_Leg_Swelling_After_Cancer.htm

http://www.mayoclinic.org/lymphedema/diagnosis.html

http://www.bannerhealth.com/Locations/Arizona/Banner+Desert+Medical+Center/Programs+and+Services/Rehabilitation/Lymphedema+Treatment.htm

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[i] chutzpah a Yiddish word for assertiveness

 

Surgeon’s encouragement to share my health story

UTI, Post Radiation Therapy Side Effects

One of the side effects I deal with from having had radiation treatments for colorectal cancer are reoccurring UTIs.  I was faced with another very persistent UTI that landed me in the hospital Thanksgiving week. I was very weak and thank the Lord that this mercy brought me home on Thanksgiving day to enjoy a wonderful meal cooked by my daughter. It was the best turkey I’ve ever eaten, those of you who’ve spent time in the hospital on holidays know what I mean.

Once again I think we need to be better at listening to our bodies especially when it comes to recurring symptoms that we know we will face intermittently. I had been doing too much the week prior a lot of driving and running around. I missed eating on time and sticking to my regimen of drinking enough fluids. This may have contributed to the severity of the UTI. Sometimes we need to be wise enough to slow down and not push ourselves beyond our limitations; however, we must always LIVE above our limitations in our mind and spirit. Live life-like everyday is the greatest blessing and gift because it is!

Blockages, living with an Ileostomy Dealing with Radiation Therapy Side Effects
As I’ve said before  in earlier posts for many years I was in and out of the hospital with blockages caused from food I could not digest. A contributing factor to this is the adhesions caused from multiple surgeries if they shift and if I eat to big of a portion of food or eat something I have a hard time digesting I can end up with a blockage.

Well that happened to me this week. I have been eating too much Italian bread and maybe too big of a portion of my meals collectively that I ended up with a blockage that couldn’t be resolved by coconut water or any of my other methods. I am so grateful to report that I was released yesterday and I’m recuperating and taking my time to work back to eating solid diet again. God is so merciful again. The surgeon I met with was very encouraging and encouraged by my attitude; he said please continue to share your story it can help so many people who are in a similar position.

If you’ve ever experience a blockage with an ileostomy, you will know the pain involved in the food being backed up and not being able to pass through the ileostomy. If the blockage is severe, it can cause you to vomit your food and bile.

It is difficult to adjust to life with anything new, but it can be done. Having an ileostomy is quite different from a colostomy. When I first had the colostomy I could eat most of the food I was used to eating.

However, an ileostomy was quite different it really limits the amount of food (selection and quantity) that I can intake. Remember I’m working with my small intestines only. Some of the most nutritional foods that are good most people (vegetables, fruit, fiber…) cannot be easily digested by many people with ileostomy though all cases are different.

Eat small meals, drink plenty of fluids frequently

It is important to eat small meals frequently throughout the day as the ileostomy never stops working so you can easily become dehydrated and have an electrolyte imbalance. I know this from experience. The waste out-put with an ileostomy is more liquid then the paste out-put that a colostomy produces. I had to be very careful ensuring I have enough fluids and  in order to get the necessary nutrients I would lack from not being able to eat vegetables and fruit etc I learned to take 1-3 Ensure Plus a day. I also drink Gatorade to replenish electrolytes lost from having an ileostomy. Electrolyte imbalance can include loss of appetite, drowsiness, abdominal cramps and faint feelings. Seek medical help immediately! While most people should avoid salt I need to take an extra serving of salt to put back all that is lost from the fluid out-put of an ileostomy. For quite a while in addition to table salt I had to take salt tablets. Consult your physician about the proper amount your body requires. Taking pills are difficult too because even a pill can cause a blockage in the stoma so I have to crush all of the medications I take which I will review in a later post.

No life isn’t always easy but it sure is good to be alive! Live in the present moment and be grateful and seek joy and find ways to bring joy and help to others in need.

If you are feeling or experiencing something similar, I’d love to hear from you. I didn’t have anyone who could relate to me at the time and I don’t want that for you.  Please send me an email or reach out to me via Facebook or Twitter.

TAKE ACTION, ask your primary care doctor for a Fecal Occult Blood Test (FOBT)[i] which can detect or prevent cancer long before the symptoms occur. Make your health a number one priority. You’re worth it and your family and friends are worth it!

Until next time.  Luv you all!

Dee Dee

 Psalm 91:2, I will say of the Lord, He is my refuge and my fortress: my God, in Him will I trust.

Prayer I say, I proclaim, I confess that You, God, are my refuge and fortress.  My trust is in You alone.