Trudy Triumph's Neurogenic Bladder Blog

Woman’s Intermittent Catheter, you can do it!

for-next-blogQuestion:

Dear Trudy,

I would like to be part of a support group of neurogenic bladder. I am very concerned about it as far as the urologist advised me to self-catheter twice a day. I am in shock. My husband is helping me right now but I have to get used of it. Also I am afraid that doing two catheters a day I will not able to do by myself. My bladder is working but obviously it is not doing it well. I have a lot of retention. I am very, very sad, and to read your blog made me think that not everything is lost. Forgive my English, I am Spanish speaking, and I live in Israel. Thank you if you can get in touch with me, thank you very, very much!

A Reader

Answer

Dear One,

Thank you for your email.  You are exactly who I write the blog for.  I agree, the diagnosis is devastating. I felt so compelled to start this blog because I felt as you do. You are very fortunate to have found out.  I suffered for years before I discovered that my bladder was the size of a large melon.

As far as support groups, I am on one, on Facebook.  It is called Neurogenic Bladder and Bowel.  I have tried others and they have not worked for me as this one has.  It is a closed group, so ask to join.

This group has helped keep me sane. Not long ago I woke up and felt complete fear.  I had a busy day, I was constipated (often if you have an underactive bladder you have a underactive bowel as well.) I had bladder pain and I was off to a substitute job at a nearby school.  I was not sure how I was going to pull the day off.  I sent a post out to this Facebook group and really let it rip..whaaa, whaaa, whaaa, you know what I mean? I was willing, but my body was weak.  It just felt good that there was a group of folks out there who understood how I felt.  I received the sweetest comments and wonderful encouragement. I agree, support groups are important.

You did not mention your physical limitations in the email.  Are you physically able to cath yourself?  It is easy to learn.  You will become more independent.  Also, it might be better for you to cath more than twice a day. Talk to your doctor about this.  If you are able, I promise you will get used to using a catheter.  I use a small compact cath and use it about 4-5 times a day. I sit on the toilet, as I use a catheter.

I do not use a mirror because there is no need to.I find this funny because I am sure a male urologist suggested that women use a mirror. Men can see their parts. Perhaps whoever suggested that we use a mirror (a male I would bet money on) could not imagine that seeing is not important to us.  We women were born with a three dimensional road map and have never seen our private parts. We need to feel. We do just fine without a mirror.

Bladder infections, are the hardest part of an underactive bladder, for me. They happen at inconvenient times. Using a catheter is not perfect and it leaves us susceptible to them.  This is something that we live with, but the good thing is, we live.  Perhaps we have broken bodies. All do really. What is not broken is our soul. We have a lot of living to do!

You are not alone.  There are many of us that lead happy, productive, good, lives.  Many children learn to use catheters too.  Now you are part of our club. Welcome.

An Excerpt from my book,

Beyond Embarrassment,

by JoAnne Lake (this is my real name) with Julia Parker 

http://www.barnesandnoble.com/s/beyond+embarrassment?_requestid=302855

So, here is how to insert a catheter without looking. The key is to understand the anatomy in the female genital area (vulva). The clitoris kind of stands out on its own. The vagina is the large opening behind the clitoris. The urethral opening is between the clitoris and the vaginal opening. I start by washing my hands with soap. The catheter I use is self-lubricated, so that takes out a big step. If I accidentally touch the tip of my catheter with my hand or another object, I throw it away, to prevent infection. I do not clean my labia at the time of insertion, since I shower once a day. My urologist told me it is not necessary, anyway. There is another school of thought, and that is that cleaning your labia with an antibiotic solution before using a catheter is best. My thoughts on this vary. I know there are bacteria in the labia, but the stinging that can happen if I had to put a solution on my labia six times a day makes me “ouch” just thinking about it. For advice about this, ask your doctor.

 After washing your hands, gently press the catheter in the area between the clitoris and the vaginal opening, and soon you will find the spot. There is definitely an opening, which will become apparent as you probe gently. It will happen, I promise. After I use my catheter, I throw it away because reusing catheters can cause bladder infections. If at all possible, I suggest you use a single-use catheter.

Shed the shame and stand proud!

Drugs and Devices to Discuss with Your Doctor

michelle-llamas

               Michelle Y. Llamas

                 Snior Content WriterDrugwatch.com

                 mllamas@drugwatch.com

 Occasionally we are fortunate enough to have a guest.

Michelle Llamas is a blogger from Drug Watch

We all rely on drugs and medical devices to improve the quality of life for us and out loved ones. But sometimes drugs put device companies put unsafe products on the market, ones that give us conditions that are worse than what we needed treatment for originally. When that happens, Drug Watch is there to help.

Doctors are people too, and even those with the best intentions might not always understand how a drug, medical device or surgery can affect some patients. For this reason, it is always best to be prepared when visiting your health care provider.

When faced with a neurogenic bladder, doctors may offer a few treatment options to patients. Any treatment that promises a better quality of life can be attractive. But, while some of these treatments may offer benefits, they may also harbor unknown risks. In the case of neurogenic bladder, doctors may recommend fluoroquinolone antibiotics for chronic urinary tract infections or a mesh bladder sling for incontinence. Studies have shown that while there are some benefits to these therapies, the side effects might outweigh them.

Here is some information on these two treatments that can help you be your own advocate.

Fluoroquinolones

Fluoroquinolones are the most commonly used type of antibiotic in the U.S. They include drugs such as Cipro (ciprofloxacin), Levaquin (levofloxacin), and Avelox (moxifloxacin). The most popular of these drugs is Cipro and it makes up 80 percent of all prescriptions. These drugs are popular because they treat a wide variety of bacterial infections. It is the preferred treatment for urinary tract infections (UTIs) and bladder infections. But these drugs also come with a long list of side effects.

For individuals who already suffer nerve-related conditions like neurogenic bladder or bowel, these drugs can be catastrophic. In studies, fluoroquinolones are linked to peripheral neuropathy — a type of nerve damage that can be permanent. It causes poor bowel and bladder control, burning pain, organ and gland dysfunction as well as digestive issues. In 2013, the FDA added a warning to fluoroquinolone labels advising of the risk.

Other serious issues related to these antibiotics are tendon rupture and aortic aneurysms and dissections — bulges and tears in the aorta. The FDA has a black-box warning for tendon rupture associated with fluoroquinolones. A study in JAMA medical journal showed these drugs can cause a two-fold increased risk of dissection and aneurysm in the first 60 days after taking one of these drugs.

Fortunately, these are not the only antibiotics and treatments available for urinary tract infections. Some of these include trimethoprim/sulfamethoxazole (Bactrim DS, Septra DS), nitrofurantoin monohydrate/macrocrystals (Macrobid) and fosfomycin tromethamine (Monurol). Keep in mind, no drug is free of side effects, but patients should be able to make a decision based on risks and benefits with their doctors.

Bladder Slings

Bladder slings, also called bladder neck slings or transvaginal mesh slings, are one of the surgical treatments for neurogenic incontinence. This treatment is more common in female adults and children diagnosed with the condition, but some males also undergo the procedure. Doctors use the patient’s own tissue or a synthetic plastic mesh implant to support the bladder neck and help it close to prevent urine from leaking.

One study in the Journal of Urology showed a high rates of success — 70 and 90 percent — in treating incontinence after surgery. Study authors found the sling “safe [and] relatively easy to perform and cost-effective compared with most alternative procedures.”

However, the FDA has also received thousands of reports of women who suffered severe complications. These include mesh erosion, nerve and organ damage, severe pelvic pain, hemorrhaging and other issues. Surgery to remove the implant and repair damaged tissues is costly and carries its own complications.

Many of these women filed lawsuits against mesh makers for failing to warn them about the risks. When considering a surgical treatment, make sure you use a doctor who specializes in these types of surgeries and can discuss the risks and benefits. Make sure to get multiple opinions if necessary. Surgeries using the patient’s own tissue may have fewer complications than one with synthetic implant.

Be Your Own Advocate

In her book, Beyond Embarrassment, JoAnne Lake discusses her own struggles with being prescribed a fluoroquinolone for a bladder infection and discussing her treatment options with her doctor.

“My body had enough problems, and I was not willing to risk having painful cartilage issues along with all the other things going on,” JoAnne wrote. “My doctor was quite offended when I would not take his drug of choice, and he refused to offer an alternative.”

JoAnne shares the importance of having a doctor who will listen and be willing to work with the patient. Patients need to be their own advocates, she says. Sometimes, this means going through a number of doctors before finding the right one. It also means being an active participant in treatment.

Fortunately, the internet is a great resource. Read up on any prescriptions and procedures and be ready with questions.

Bio: Michelle Y. Llamas is a writer and researcher for Drugwatch.com. She is also the host of Drugwatch Radio and has appeared as a guest on podcasts and radio shows. Her work has appeared in peer-review journals.

Sources:

Castellan, M. et al. (2005). Bladder neck sling for treatment of neurogenic incontinence in children with augmentation cystoplasty: long-term followup. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15879865

Dik, P. et al. (2003). Transvaginal sling suspension of Bladder Neck in Female Patients with Neurogenic Sphincter Incontinence. Retrieved from http://www.jurology.com/article/S0022-5347(05)63392-7/abstract

The Medical Letter. (2012). Drugs for Urinary Tract Infections. Retrieved from http://secure.medicalletter.org/w1395a

 

BEYOND EMBARRASSMENT receives the Silver Living Now Award for Enriching Lives

living-now-awardWhen we wrote Beyond Embarrassment, the goal was to offer comfort and compassion to those dealing with neurogenic bladder and bowel, because this disability is so embarrassing.

The tag line, for Trudy Triumph, the blog and the book,  is…Shed the shame and stand proud.

This award shows that the judges understood the point of our book and I am thrilled that it stands among other motivational books.

I did not do this alone.  Julia Parker did most of the research. She helped with some writing and tons of proofing. Most of all, she was a friend through the entire process.  She continues to be an encourager to me, as I try to encourage others.   Dr. Lora Plaskon was the icing on the cake.  It is impossible to write a medical book without the endorsement of a medical doctor.  She is such a good doctor because she cares about the person. She noticed my blog early on and was happy to see a patient’s voice. The forward she wrote for the book is right on. As a writing team, we truly needed each other.

Knowledge is power. Besides my story, I chose to add medical research and interesting tidbits to the book, for a feeling of community and understanding.
 Comments about the Living Well Awards

“The Living Now Book Awards recognize books that help readers help themselves, to learn about enriching their lives in wholesome Earth-friendly ways. Lifestyle publishing categories such as home, health, family and personal development are the fastest-growing segments of book publishing today, and the Living Now Book Awards help demonstrate the importance of these books to readers and their vitality in the marketplace.”

“Books are an important tool for gaining knowledge about life-improvement goals, and the Living Now Book Award results announcement is a must-read list for helping us achieve those goals.”

“Authors and publishers all over the planet are helping readers sense the need to slow down, see and feel the natural world around them, and to find balance in their lives. The Living Now Book Awards are intended to recognize and promote newly-published lifestyle books that help us keep ourselves, our families, and the Earth healthy – today, and for future generations.”

 The judging panels include experts of editing, design, reviewing, bookselling, and library.  Judging is based on content, originality, design, and production quality, with an emphasis on innovation and creativity. The judging panels include experts of editing, design, reviewing, bookselling, and library.  Judging is based on content, originality, design, and production quality, with an emphasis on innovation and creativity.
This is a happy day indeed.  To be understood is to feel whole.

Finding Joy in the Mist of Trouble

10 ways to find your joyRandy and I Joy

  1. Find joyful books, How about,  Marley and Me?
  2. Find joyful people.
  3. Celebrate what you have, even the little things.
  4. Be creative.
  5. Help another.
  6. Organize a drawer.
  7. Take a load to Salvation Army.
  8. Stay away from the news.
  9. Forgive past grievances.
  10. Think of something that you can smile about.

    MY JOY STORY

A few weeks ago I visited a dear relative and his wife. Both of whom are going through a major obstacle. He is suffering from ALS. (Lou Garrick Disease)

Because the affliction can hit any part of your body at any time, it is not unusual for the bowel and bladder to be effected first. For Allen his first hint was extreme exhaustion.

Here is the definition of ALS;

http://www.livescience.com/39583-als-lou-gehrigs-disease.html

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease or motor neuron disease, is a progressive neurological disease that causes the neurons that control voluntary muscles (motor neurons) to degenerate, according to the National Institutes of Health (NIH).

In the United States, as many as 20,000 to 30,000 people have the disease, and about 5,000 people are diagnosed with it each year, according to the Centers for Disease Control and Prevention (CDC).

A monthly activity they participate in is a picnic for families who are dealing with the various ramifications of this disease. We all know that there is safety in numbers. There is acceptance and comfort that leads to an inner joy. For Allen and Sophie this time together with other families offers a kind of normalcy to their situation, an opportunity to ask questions, and most important a community that knows exactly what they are going through.

I see this blog similar to the picnic mentioned above. It is a place where we can be real and share our concerns with overactive and underactive bladder and bowel. Our plight is not common in conversation at the dinner table, similar to what Allen and Sophie deal with. For them, a discussion about dying a slow death is not a topic most want to have, so to be with others in a similar situation helps to feel normal.

Are people dealing with difficult situations supposed to be glum all of the time? Absolutely not! We have but one life, so it is important that we find the joy in our situation and move forward.

Today Allen and family members are planning a trip to a gun range. The men plan to hold Allan’s gun up as he aims for that target, but mostly I suspect they will have a day of men talk or perhaps men non-talk. Regardless they will be together and enjoy each other.

No matter what life throws at you it is possible to find JOY

Let me encourage you to be joyful in spite of hard circumstances.  The alternative will bring you down and ruin your day. Can you give a friend a call?  Can you create a beautiful picture? What can you do to find your joy?

Back Packing in Southeast Asia with a Neurogenic Bladder and Bowel

Back PackingLast week I received a question from a reader.  It threw me a bit because I was tempted to put on my “Mommy hat” and say, “No, stop, you don’t want a bladder infection, stay home!”  Luckily, I have an adventurous side, as well. I met my husband in Europe and as you can see by this picture, we backpacked. I can completely understand the need to at least try.  Let me first share Cara’s question with all of you:

~From Reader~

Hey—

I’m new to your blog.  I am 31 years old, and I also suffer from neurogenic bladder and bowel due to a spinal cord tumor that was removed two years ago. My boyfriend and I are planning a three-month backpacking trip to Southeast Asia, and I’m at a loss of how to plan!!!  I’m not at [all] worried about intermittent cathing, but I’m worried about how I’ll handle my bowel regimen when I’m not even sure what toilets are going to look like in the various towns we visit.  Do you have any connections or resources with anyone who has done a similar trip?

Thanks,

Cara

 

~From Trudy~

I have never backpacked in South East Asia but I have backpacked enough to know that clean hands are nearly impossible and reliance on your water purifier is very important.  My question to you is have you traveled much?  Are you ready to work through obstacles and if you need to are you able to pay for medical services?

 I did ask a dear friend, Sue, who has done extensive travel to the area.  She said that the nicer places have western-style toilets.  For the remainder, expect a hole in the ground.  She has visited several doctors over the course of her travels.  Once she was bitten by a rabid dog (yes, she had to have the shots because there, the people get the shots, not the dogs) and another time she had a sinus infection.  Both times she found the doctors competent. 

 I wrote a letter to David Chancellor from the Underactive Bladder Foundation, a group dedicated to improving lives for those of us with an underactive bladder. I know you wrote that you are interested in backpacking and David’s reply speaks to staying in hotels. I will share this all the same because it has some very useful information.

 

~From David Chancellor~

Hi Trudy,

I trust you are well and it’s great to hear from you! I agree that this is an important topic from one of your reader’s. Thanks for shooting me an email!

Having traveled near that part of the world (Taiwan, China, Australia), I do have some concerns for your blog reader- but life is meant to be lived and with planning this can work! Her post did get me thinking, so I will ramble a little below . . . .

 To answer her question, you’re correct in asking if she has travel experience and maybe more details where she is going. The challenges associated with her travel will mostly depend on the areas she plans to visit. In the big cities or major tourist areas of the more industrialized countries like Thailand, Malaysia, and Indonesia, I am confident she will find adequate restroom facilities nearly anywhere.

*When out and about she can rely on medium and large hotels for good bathrooms, as well as large malls or food chains – these can be googled in advanced and plotted out before leaving. When going to the less industrialized countries, as well as rural destinations, access to large enough restrooms may not be as reliable.

*Heat may also be an issue, as it is hotter and more humid and AC is less widespread than at least I am used to coming from Pennsylvania. In those areas you need to be prepared to rely on yourself and limit situations where you will be away from restrooms or lack privacy. This might mean spending a little more money for accommodations with private bathrooms compared to hostels with eight people per bathroom.

*Also I don’t need to mention that airplane bathrooms are very small and she should be prepared for that. Travel can be very rewarding so it can be worth the challenge, but she should be aware of some of these unique situations.

*Ideally she should bring enough supplies (hand sanitizer, wipes, catheters, and some backup antibiotics) to last the entire trip. Unfortunately, that will mean packing more but that does not have to be a huge burden.

*While there are pharmacies in every country should you need to restock, looking for a specific product in a panic without speaking the language is unpleasant. As a backup – google the translation for brands (or the names of local brands) and names for different goods that you can relay in the local language should you need to restock your supplies.

I have noticed that you have written some insightful blog posts about dealing with neurogenic bladder and bowel while traveling. You should share these in case she has not seen them!

[Feel free to copy any part of what I wrote . . . it’s just some ramblings, no need to credit me!]

David Chancellor

Founder, Underactive Bladder Foundation

http://www.underactivebladder.org/index.php/about-us

 ~From Trudy~

In conclusion, my suggestions are to make sure that you bring along:

*Catheters that have an extra sterile component, offering a hands-free device for the part of the catheter going into the bladder.  An example of this is the catheter described in last month’s blog post. Sometimes I will pack along a condom to use on the finger that I insert the catheter with, to keep it clean. 

*Be sure to bring along an assortment of catheters (some will melt in the intense heat)

*The bowel issue can be managed with these items: Antibacterial soap and hand sanitizer.  Handy-wipes are a must as well as zip lock bags. 

Whatever you do not trust the water!

* Set up a built-in device to help you empty your bladder regularly. Coloplast offers a timing device app for your cell phone that will help you plan cathing intervals.  Alternatively, you can get a watch with a little alarm clock to help with a regular voiding schedule.  You will have jetlag and so many interesting things to see, but be careful. I you are like me, you do not feel the urge to pee unless your bladder is too full.  We want to save our kidneys by going every 4 hours or so.

*Please make sure you bring enough money to be able to visit a doctor, if you need one  A good hotel might be a good respite as well, at regular intervals between backpacking trips.

Right now you have a pretty healthy bladder because you are new to using a catheter.  As time goes by you might experience more bladder infections.  Be sure you bring along some emergency antibiotic.  You might talk to an infectious disease doctor to ask for guidance or your trusted urologist for suggestions as well.

Have a good time & PLEASE write back and tell us about your trip.

Yours, Trudy

First Encounter with CompactCath, my Free Sample

Currently I use Speedicath by Coloplast.

Currently I use SpeedicathIMG_5584 by Coloplast.  For those who do not know Speedicath is small and looks like a skinny tube of lipstick. The complaints I have heard about Speedicath is that it is too short and one sometimes has to touch the lubricated ridged tip to insert it easily. But this catheter has served me well over the years.

Now I am provided with another option.IMG_5579

I received a sample: size twelve french. (Fourteen  french is what I normally use.)Measure

My first time using the catheter I definitely needed two hands. ( I can’t resit this tidbit. Most medical pictures have a woman separate her labia with one had and insert a catheter with the other.  For my book  Beyond Embarrassment I had a graphic artist change that in a picture, because actually the act of a woman opening her legs, opens her labia as well. Which is a good thing for the first time I inserted this new catheter!) I needed one hand to hold the device and one hand to pull the tubing out of the wound container.  As I pulled the tubing through the protective sheath, the white cylinder you see in the picture (which is great because I am sure this will cut down on infection) I got a little pinch because I did not pull it down far enough.

I then pulled on the  tubing to insert the catheter into my bladder, the lubrication is so slight that I could not see the slime but I know it was there, because the catheter is easily inserted.  An excess of lubrication can cause a yucky build-up over the day, actually, so it is nice that they have this type of lubrication, with no build up.

The urine flowed out quickly.

The ring shape made it easier to hold.  

Countless times I have dropped a catheter in the toilet. Not a fun fishing expedition, by the way! This is the part of their design that is surprising to me.  It is secure in my hands and easy to hold while using.

I am sure insertion will get better with practice.

COMPACTCATH, A REVOLUTIONARY CATHETER!

CompactCath is a first of its kind compact urinary catheter, designed to fit seamlessly into the lives of active people who self-catheterize.
THE PRODUCT !
CompactCath features:
• Compact packaging that fits in your hand !
• Pre-lubrication for smooth insertion !
• Retractable mechanism allowing easy and discreet disposal !
• Flexible funnel for easy aiming !

• Non-touch hygiene mechanism for infection protection !
THE STORY

Thanks to modern medicine, people with chronic conditions who used to
be tied to hospital settings are now leading active, independent lives.
However, traditional catheters have been designed for the hospital, and
often come in the way of everyday activities.

CompactCath was designed by a multidisciplinary team of physicians,
engineers, and MBAs, in cooperation with physicians, nurses and patients.
We applied design thinking methodologies and are committed to improving
the quality of life of those who need to self-catheterize.

The result is CompactCath, a product that fits to the modern lifestyle of
patients. We envision a world where people will no longer have to fear or
fight with their medical devices. Time and energy should be spent on the
important things in life.

ABOUT US!
Alumni of the Stanford StartX-Med accelerator program,
CompactCath was founded in 2011 and is based in Palo Alto, CA.
CompactCath has presented at the Aspen Ideas Festival in 2012, obtained
2 patents in 2013, and expects FDA clearance in the summer of 2014.

Website: compactcath.com
Contact: info@compactcath.com !

 

New Back Cover of Beyond Embarrassment

 

Book Description:052915-BeyondEmbarrassment2_HiRes_Foreword2_6x9

Back Cover:

HEALTH/Women

Reclaim Your Life

Release the Fear and Embarrassment

For Women Who Suffer and Those Who Share Their Journey

 

JoAnne’s story is engaging. It inspires, while offering suggestions for managing life’s hurdles. In an honest, will-to-succeed style, this journey focuses on neurogenic bladder and bowel condition in which a person lacks control due to a brain spinal cord or nerve condition. The source can be aging, a chronic health condition, trauma, or many other causes. Often called an under active or over active bladder or bowel, its symptoms vary but the difficult daily reality is shared.

  • Valuable guide, much like a fresh prescription filled with practical advice
  • Educates, empathizes, and encourages women who struggle with the same health issue
  • Written with a girlfriend-to girlfriend feel, sharing the path to survival and success
  • Sprinkled with Tips and Knowledge Nuggets that high light points of importance
  • Encouraging and equipping the reader to live every day to the utmost

 

With medical input from expert medical research librarian and Biosleuth, Julia Parker, readers will discover current research and facts equipping them to meet their medical challenges and work with their medical teams.  Valuable for healthcare professionals to share with patients

 

“Offers a candid memoir of her experience with neurogenic bladder and a wealth of practical advice about coping with its daily complications. An invaluable resource for NB sufferers.”

—Kirkus Review

“This is the best and most complete book on neurogenic bladder syndrome that I have read in my 30 years of family practice medicine. I will use it again and again as a resource and refer my patients to read this excellent book.”

—Kathy Matteson MN FNP ND Medical Provider

3 awards

 

Summer fun . . . Do not let a Neurogenic Bladder Stop YOU

I was accommodated at this stop.

I was accommodated at this stop.

My memories with my grandson were the best.

My memories with my grandson were the best.

Breathtaking beauty, I almost missed because I was not sure how to handle my neurogneic bladder.

Breathtaking beauty, I almost missed because I was not sure how to handle my neurogenic bladder.

My Husband Randy and Grant.

My Husband Randy and Grant.

Now that Summertime is almost here, I want to tell you about a Sheri Griffith River Rafting Trip, I took in Utah in April.  

I DID IT!!

Well of course a river rafting trip means a day-long excursion with no restrooms.  Because I use a woman's intermittent catheter to pee, excusing myself to take a swim is not an option. 

I also get concerned with sanitation.  How clean is the river water? What about my neurogenic bowel?  AN ENTIRE DAY, seemed overwhelming.

Luckily I have a husband who does not have the same concern.  He told me, "Even if the worst happens, you will have lasting memories."  I am so glad that I followed his advice.  

It is easy to fall prey to worry.  I had no reason to feel as I did.  The day went well because I made some arrangements with the owner before I went out.
1. I was honest and told them that I have a neurogenic bladder and bowel. That meant that I had to have clean water and a portable toilet.  
2. There was a chance that I would need to stop along the way. 
3. My back is fragile and I needed to sit forward.

No problem! When I arrived I rode with the owner of the company; we sat forward in an oar raft. This gave me the chance to talk to him about other accommodations he has made with others who had all kinds of disabilities. He said that they do it all of the time.

I give this tour company my highest rating.  I thank them from the bottom of my heart for giving me an exhilarating experience and great memories with my family!
******************************************
About the tour 

Hidden along its path are wonderful steep-walled canyons that were carved by this powerful force of nature over the thousands of years. To experience the Colorado River up close and personal, on a few-days Colorado River rafting trip, is a lifetime experience not to be missed.

http://www.griffithexp.com/

Utah's Premier Company | Rafting Trips out of Moab, UT on the Colorado River - Sheri Griffith Expeditions
About the Company
http://www.griffithexp.com/why-pick-us
Why PICK US;Why Pick us?| Utah's Premier Company | Rafting Trips out of Moab, UT on the Colorado River - Sheri Griffith Expeditions has received numerous awards for business ethics and community involvement, including the prestigious “Best of State Award” for a River Outfitter and is the only Moab-based outfitter to be recognized by National Geographic as one of the “Best Outfitters on Earth.”

Kidney Kindness for the Neurogenic Bladder

Kidney beansAbout six months ago I was diagnosed with Third Stage Renal Failure. A wake up call for sure and I flipped of course because I am not the stoic sort. Please do not think bad of me, yes I grew up with Love Story too, I just do not want be the one saying long goodbyes. I know God is in control and in the end I have gotten used to the idea. Here is a little of what I have learned.

My husband and I had travels to do, so just yesterday was my first visit with the doctor who specializes in kidneys a Nephrologist.

What Is a Nephrologist?

https://www.davita.com/kidney-disease/overview/treatment-overview/what-is-a-nephrologist?/e/6884

“A nephrologist is a medical doctor who specializes in kidney care and treating diseases of the kidneys. The term nephrologist comes from the Greek word “nephros”, which means kidney or renal and “ologist” refers to someone who studies. Nephrologists are also called kidney doctors. Nephrologists are educated in internal medicine and then undergo more training to specialize in treating patients with kidney diseases. They commonly treat chronic kidney disease (CKD), polycystic kidney disease (PKD), acute renal failure, kidney stones and high blood pressure and are educated on all aspects of kidney transplantation and dialysis.”

For years I have been visiting the Virginia Mason Urology clinic, in Seattle Washington. Actually it is called the Urology and Kidney Transplant Department, Thoughts of dread swelled the first day I saw that sign. I was shocked to see the sign actually, I was not really thinking that there was such a strong connection between urological woes and kidney disease. “No dialysis or kidney transplant for me!” has been my mantra. Being real I need to know that even though it is unlikely it is possible for anyone with urological problems to end up with kidney disease.

My kidney woes likely started many years ago when I was living undiagnosed urine retention and then years following with back to back balder infections. For that part of the story check out my book, Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel.

So yesterday was my first appointment on the other side. I was ushered to a different waiting area across the hall and observed several patients in wheel chairs. My stress level was a little high, but it did not come through with my blood pressure because that morning I participated in a over the top exercise class. Remember that physical exercise is good for blood pressure and high blood pressure is not good for your kidneys.

When I finally saw the doctor, he smiled, “ummm, your tests look pretty good.” I was thinking “If I have third stage kidney failure stamped on my chart, “How good is that?” Let me tell you what I learned from my doctor. He did not think I should even be there because usually he does not see patients until they were fourth of fifth stage.

I can live a long time this this condition. I am not sick yet and dialysis at fourth stage can be led off for many years. I walked out of there with a lighter step and will continue to be careful. Stay off the Advil, eat fresh fruits and vegetables. I do this anyway because it helps me with my neurogenic bowel.

All and all whatever looms in the future I will try my best.

How do you deal with difficult situations? Do you have a kidney story to tell? Please share.

Calling all Underactive Bladder Patients!

Stanford Biodesign 2Hi All,

Not long ago I was contacted by some doctors from Stanford, who are interested in connecting with those of us that have an underactive bladder.  I tried to get the scoop, but was told it was a secret for a while.  I am passing this along in case you are interested in contacting them.  If you do decide to help these fine folks, please let me know how it goes.  I told them that I might be interested too, after I found out what they were working on.  The underactive bladder is a real problem for many and it seems there is interest in helping us, thank God.

I wish you fine doctors at Stanford a windfall of positive results!

 

Calling all underactive bladder patients! 

 Stanford Biodesign is an innovative program located in the heart of Silicon Valley focused on solving meaningful clinical needs. Our team, composed of engineers and physicians, has a mission of helping patients with underactive/neurogenic bladder. Patients are at the heart of innovation – it is their need for better solutions that is driving us forward.

 

Therefore, we are looking to talk to you about your experiences to understand the issues of day-to-day management of your bladder. In return, we may be able to help you become one of the first patients who is finally free of self-catheterization. 

 

If you or someone you know has been diagnosed with underactive/neurogenic bladder and is interested in helping advance underactive/neurogenic bladder research, please send an email to UAB.research.timm@stanford.edu with a subject “UAB research” and we will take it from there. Come be a part of helping the thousands of other individuals with this condition.

 

Sincerely,

The Stanford biodesign fellows

Mike Carchia, MD

Véronique Peiffer, PhD

Craig Stauffer, MD

Rich Timm, MS