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Resources for Ostomates

This is a reposting of an older blog I wrote. I thought it was a good time to share again in light of a recent question I received from a blog reader.
I was in a conversation recently with a new Facebook friend, Donna, which made we think it was time to revisit the top of resources of the un-insured or under-insured. She shared with me that she was able to get ostomy resources from Banner Home Care.
She called Banner Home Care and asked them if there was anyway they could bill her for the supplies. The gal she talked to said that wasn’t a problem. Then she said she’d send an application for financial assistance and faxed it to her. Donna filled it out and faxed it back and in the meantime my supplies arrived. A few days later she received a letter in the mail saying that she qualified for 100% financial assistance and would be getting all of my supplies for free. She had to let them know when and if her insurance situation changes, but for now, she can get supplies free for an entire year.
Suggestions for contacting Banner Health: As for the financial form, the patient would have to ask for one from their specific Banner Home Care/Banner Hospice located where they are. At the bottom of the web page there is a ‘Contact Banner’ link. There are different contact numbers for all of the different states Banner Health covers. If someone is in Phoenix, AZ is looking for what Donna discovered, the telephone number in Gilbert, AZ is: 480-657-1000. She suggests that you (the patient) tell whomever is answering the phone exactly what your situation is, whether you are uninsured or underinsured and are needing ostomy supplies and would like to apply for financial assistance. She also said the employees seemed genuinely caring and concerned and will do everything in their power to help a person out as best they can.
I also recently received an update from my friends at non-profit organization, The Wholeness House/Osto Group Ladies  “I just want to thank you for all the donations that are coming to us by way of your outreach.  We have increased tremendously in shipments and I know God is using you to assist us in this fashion.~Marian”
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 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 continued support!
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.

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Cancer Support Helpline

As I’ve said many times it would have been so comforting to have someone come beside me and share with me their journey. Just discovered this gem of a resource today CSC’s TOLL-FREE Cancer Support Helpline is open Mon-Fri 9 am- 8 pm ET call 1-888-793-9355. http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Cancer-Support-Helpline.html

 
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Posted by on August 28, 2012 in Uncategorized

 

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Inspirational vistor

I was thinking about a visitor I had after my first surgery when I first had my colostomy (this is going back 25 years ago). I remember a very joyful woman coming into my room and exuberantly sharing that we had something in common. I could barely lift my head from pain and here she was just as happy as can be what could we have in common? It turns out she was a cancer survivor and she wanted to share her experience and encourage me to have hope for recovery. She was, in fact, very encouraging and maybe that brief visit was just what I needed that day.

I retell this story because I recently discovered a Facebook page of a very inspirational woman who reminded me of the visitor I had that day. Barbara, like my visitor, has no prior relationship with the people she visits at the hospital, but she does it out of a compassion for others. To many its inexplicable, but to the people who dedicate their time to visit cancer patients, children and/or hospice patients it’s unexplainable how life changing and rewarding it is.

“Barbara Taylor Vaughan is 89 and in the beginning stages of Alzheimer’s. She started a Facebook page to help chronicle her illness and put a face on Alzheimer’s. Barbara hopes educating others will inspire them to volunteer to help ease the suffering of those with the disease, families, caregivers. She recently shared a post chronically a story of when she belonged to a group that would sit with hospice patients that had no family or friends.” I would like to encourage you to check out her Facebook page and read this encouraging post.

“I expect to pass through this world but once. Any good therefore that I can do, or any kindness or abilities that I can show to any fellow creature, let me do it now. Let me not defer it or neglect it, for I shall not pass this way again.” ~William Penn

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.

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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.

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Posted by on May 15, 2012 in Uncategorized

 

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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

 
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Posted by on April 28, 2012 in Uncategorized

 

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.

 
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Posted by on April 13, 2012 in Uncategorized

 

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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).

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