National Rare Disease Day, February 29, 2016

I received an email from a man I've never met whose wife Heather suffered from a rare disease: mesothelioma cancer. She is a survivor and started a blog chronicling her disease and recovery, just like I did on this blog. He said he found me through another site which is a small miracle considering hyperaldosteronism is nothing like mesothelioma other than its rareness. We exchanged some emails and he introduced me to the National Rare Disease website, asking me if I would post something to honor its special day, February 29. I wholeheartedly agreed. 

The National Rare Disease is website that explains what a rare disease is and has a database of good information, including a personal stories page. http://www.rarediseaseday.org/article/get-involved. 

The Get Involved page allows you to share your very own story which in turn could help others who may not know what they have or just received a recent diagnosis and are just starting the arduous process of testing.

Heather Von St. James is a survivor of her rare form of cancer, just like many of you who visit this website. We did not have cancer like she did, but we suffered from a life threatening disease that can easily kill if left untreated. The thing about having a rare disease is the too often lack of research and information for patients who want to educate themselves. Knowledge is power and as a patient, advocacy is crucial. Getting a scary diagnosis is one thing, having a rare disease where there is conflicting and doomsday information on the internet is another. The many and complicated steps Heather had to take are not unlike the steps Conn's patients take to ensure diagnosis and determine if surgery or other forms of therapy is an option. 

To read about Heather's journey, visit: http://www.mesothelioma.com/heather/survivor/#intro

I plan to post the link to the National Rare Disease website to my Facebook page as well. We are fortunate to have new avenues like this to spread helpful information. Hopefully, this site will encourage people to share and meet new friends who can help or be supportive. The more we connect, they more we help the next guy, even if they have other diseases, it still creates a dialogue which gets passed on socially more than we realize.

For my Conn's readers, please continue to contact me for questions on testing, surgery and life after one adrenal. I've met some amazing people who have overcome a lot of struggle and survived the hormone wars. In the meantime, please visit the National Rare Disease website and remember change is happening, The more sites like this that are started, the more our own rare disease has a chance of becoming more visible and mainstream (which I thoroughly believe it already is) and get the attention is deserves.

Thank you Cameron Von St. James for reaching out and tell Heather she is a warrior we could all look up to.

Thanks for supporting this blog!

Abiquiu, NM

It's hard to believe its been almost seven years since I was diagnosed with Conn's. Despite surviving the disease and having surgery in 2009, I am still committed to informing and updating readers about the stages of testing required for a proper diagnosis and treatment/recovery plan on this blog. I also find it crucial to share with readers updates on my post-adrenalectomy life and encourage others to share their stories as well.

For me, the surgery was a success, but if you read this blog regularly, my life has changed  a lot since surgery-- my hypoglycemia became severe, making things a little more complicated. Stress is still my #1 enemy, but I continue to learn new ways to take care of my delicate system with supplements, acupuncture and a new way of eating-- and living. It's been frustrating and scary, but everything seems to make sense after finding this out. My doctors have been monitoring my pre-diabetic issues for a very long time, even before I had Conn's, and after some really scary episodes complete with erratic behavior and several instances of passing out, finding out why has helped me understand why things have been so off for so long. Even after surgery. But more on that in another blog.

Thank you for writing in and posting your comments. People from all over the world have contacted me to ask questions and share their experiences which is so helpful. Some folks have had easier experiences with Conn's, but many have dealt with the darker side of this disease that includes a multitude of side effects many websites continue to unfortunately omit. It helps others who just found out they have Conn's to see what they can expect, so keep the dialogue going! This blog's purpose is to inform and support and whatever we can do to help the next guy, we should do.

Maybe we are getting closer to getting the attention Conn's patients desperately deserve. I was recently interviewed by a health writer in NYC who wanted to pitch my story to the Dr. Oz Magazine, which is something I think would help A LOT of people out there. Here's hoping they take it. I will keep you posted. Who knows, maybe they will put a group of us on the show where we could share our stories, thereby helping others who live in fear, worried about their own misunderstood symptoms.

Wouldn't that be great?

Interesting article about Hyperaldosteronism in obesity related hypertension

BOSTON — At the Cardiometabolic Health Congress, Colleen M. Majewski, MD, discussed the link between elevated aldosterone and obesity-related hypertension, and how knowledge of this association factors into the management of patients.

Please click on link to read entire article.

http://www.healio.com/cardiology/chd-prevention/news/online/%7B8f2d643e-bf7c-4fd2-a9fc-27ce66076206%7D/expert-examines-contribution-of-aldosterone-in-obesity-related-hypertension?sc_trk=internalsearch

N.A.D.F. needs stories about adrenal crisis for Lobbying effort for better EMT training

As a member of the National Adrenal Disease Foundation (NADF), I receive emails each week regarding updates and issues for people suffering from adrenal diseases (Cushings, Conn's, Addison's).

Today, I received a request for stories about adrenal insufficiency or crisis that precipitates patients to go to the hospital or emergency room. The goal of the study is to collect stories to share to legislature to create a better protocol for E.M.T. Many E.M.T. workers are not trained or familiar with the signs of adrenal crisis. This is a good thing they are doing and if any of you have a good story to share, Karen at NADF, is the person you can contact. Her email is: karenf@caresfoundation.org

Many people have contacted me on this site to share their health scares, especially in the early stages of Conn's when potassium levels became too dangerously low, or high blood pressure caused heart attacks or other problems. As well, anyone who has gone to the hospital with severe fatigue, numbness of limbs, brain fog, confusion or polyuria issues that has already been diagnosed with the Conn's Disease, should contact them.

We need more research and media attention for Conn's

Dr. Jerome Conn

If you have been following this blog, you know I have struggled just like you with the debilitating disease called Hyperaldosteronism, also known as Primary Aldosteronism and more commonly referred to as Conn's Syndrome. For seven years, I have chronicled my journey from the steps it took to get a diagnosis, to finding a good endocrinologist who understood the disease (no easy feat), to my ultimate choice of having surgery.

I receive questions from people all over the world, from the recently diagnosed to those who are waist deep in the murky waters of Conn's. And then there are the survivors who opted for surgery like me whose ultimate question remains steadfast: Are we going to be able to live a normal life with one adrenal gland?

Well, yes, I believe so, but it will be tricky at times.While a few people have written to say that they have their lives back with little repercussion, there are many more who continue to have issues--big ones-- that they directly attribute to losing an adrenal gland. I include myself in that group.

Many of us are experiencing similar issues: hypoglycemia; affects from severe stress that can result in adrenal hypofunction (symptoms similar to Addison's disease); hormone imbalances in women; and hyperinsulinism- the result of overtaxing the remaining adrenal.

Sadly, there is little to no post-surgical data on our disease to be found on the internet. We are left on our own, seeking out the help of each other, wondering why our endocrinologists don't have the answers to our questions and seem to break up with us after surgery. If only Dr. Jerome Conn was still alive.

While surgery can be a life saver, managing stress is crucial to the body and mind. Living with only one adrenal gland can seem like a see-saw ride, sometimes you're up and feeling free of ailments, the next you're on the ground wondering why you are having more health issues after the faulty glad has been removed.

Other glandular diseases like Addison's and Cushing's seem get most of the attention. From what I have learned from having this disease, Conn's patients need some more attention too. But even today, many sites like the National Adrenal Diseases Foundation (NADF), still don't merit the symptoms so many patients experience. I for one know they exist as I had them and countless people who read this blog have too. I contacted the NADF three years ago to get them to add the numerous other symptoms and was fortunate to get a response from Dr. Paul Margulies: http://hyperaldosteronism.blogspot.com/2012/01/change-in-nadf-conns-description.html. Yes, they added the other symptoms, but they still wrote:

"While most individuals have no specific symptoms, some may have fatigue, headaches, muscle weakness and numbness. The physical examination is usually normal except for the elevated blood pressure"

The three underlined words are disturbing to me as I have received many emails from patients suffering with debilitating symptoms that have affected their lives traumatically. 

The Clinical Journal of the American Society of Nephrology state that 10% -15% of newly diagnosed hypertensive patients are due to primary aldosteronism. Considering the amount of Americans that have high blood pressure, this number translates into an alarmingly high percentage. If that alone isn't enough to get more research and attention, think about this: of those 10-15% of people, how many are getting the treatment they need for Conn's or are their doctor's simply passing out meds without looking further into other symptoms? I realize the potassium levels are usually the indicator and some patients with this disease have somewhat normal range levels. But if they are complaining about migraines, polyuria, tingling limbs, fatigue and brain fog, shouldn't doctors pay attention to these and delve a little deeper? I think so.

So what can be done for our misunderstood Conn's group?  For starters, it would be great if our designer disease got some major media play, like on The Doctor's or Dr. Oz  I've contacted the Dr. Oz show twice but received no response. Maybe if someone really famous got this disease it would help, which is a terrible thought, but has some truth.

At this point, I suggest we continue to help and support each other here and on other sites. But, if you are on a medical site and read that there are no known side effects of Conn's, I highly suggest you contact that site and tell them your story. The more people know about the reality of this disease, the more informed we can become to help the next guy who gets diagnosed with this strange adrenal condition with an awfully long name.

Living better with supplements

It's hard to believe it's been almost five years since my adrenalectomy! I am continuing to learn how to take better care of myself, which seems easier in theory than in practice. Despite what all the doctors said, there are changes that have had to be dealt with. The number enemy still remains to be S-T-R-E-S-S.

On the upside, I continue to live without the daunting effects of Conn's, like high blood pressure, bloatedness, fatigue, polyuria, brain fog (this was the worst), and paresthesia. With the aldosterone producing tumor gone, all of these side effects should be gone for all who choose surgery vs. living with the tumor and taking meds. 

That said, as I've mentioned in other posts since the surgery, I have had a tough time with hypoglycemia and have to monitor my sugar levels constantly. While I was diagnosed with this years before the adrenal tumor, I notice its presence more now. I continue to be careful with making sure I have trail mix or nuts with me at all times, water too. I notice I am more prone to episodes when working out. Stressful days followed by a workout at the gym can make it worse. Symptoms include feeling faint, sweating, confusion, and shakiness. This can be a dangerous condition, so if you think you have it, consult your doctor.

Stress in any form seems to affect me more now than ever. Perhaps that is due to just one adrenal doing the work for two. I don't know. Memory issues have reared their head again, but this is not from Conn's, it was tragically caused by acute exposure to carbon monoxide my boyfriend and I suffered from in 2012-13. That story remains for another posting, another day.

But the good news is I have adopted a daily supplement plan that has made a big difference in my life. I am going to list these for you or anyone that may benefit. Please note, this is a personal regime, I am not a doctor and I do not advise anybody to take these without doing research or consulting a doctor. 

For Stress:
B6
Omega 3's
Tumeric (also good for pain)
Theanine (anxiety)
Taurine (anxiety)
Vit. C (boosts adrenal hormones)
Ginger tea for stomach upset and reducing inflamation
Licorice tea for acid reflux, digestive issues and respiratory infections

For the Liver:
Milk Thistle
Alpha lipoic acid
N-acetyl-Cysteine
Vitamin E and D

For Adrenal Support:
Magnesium (this also helps with anxiety)
Zinc
Ashwaghanda

For Hypoglycemia:
L-Carnitine
Chromium Picolinate

Always follow the recommended doses. 

**Remember, these are merely the things that I use to help my remaining adrenal gland and cope with stress. Always consult your doctor or Naturopath before beginning a supplement program. 

Hopefully this information is useful to you. I always like learning what helps for others, so let me know if you have suggestions that have made your mono-adrenal journey better.

June 2013-More post-Conn's Updates

It's been way too long since I last updated this important site. Please don't take my absence as a sign I have moved on after surgery and forgotten about all of you. I've merely been focusing on making a living, literally trying to survive in the high desert where the economy has seemingly vanished (which is Santa Fe, NM). I can honestly say it's often been a challenge living with one adrenal while dealing with the frustrations of work, lousy bosses and landlords. Thank goodness for spring.

I've recently discovered a site called Life Extension  that my scientist friend suggested. Under the adrenal section, I found some good supplements for taxed glands (gland). I now L-Carnitine  and ALA (alpha lipoic acid) which helps build up insulin resistance and is also good for the brain. I'm about to add DHEA which is also good for the adrenals. I have noticed positive effects since starting them a month ago; I have more stamina and am less confused-which is an after-effect not from Conn' s but from CO poisoning in my old rental unit (more on that below). I continue to take vitamins C, E, B (pretty self explanatory). But some new additions include Taurine-an anti-oxident that also helps protect against cardio vascular disease; Lysine-an amino acid for lowering my glucose; L-Theanine-to help curb anxiety and prevent Alzheimer's; Magnesium malate-for fatigue. I am also a big tea drinker and add a mixture of uva ursi and passion flower which helps with UTI's and calms me down.

Re: the CO poisoning-- last October '12- January '13, the wall heater in my house was found to have had a leak in it- determined by NM Gas company in early January. It had been ongoing for months, and I nearly lost my dog, cat, my boyfriend and my own life. The animals slept by the unit and were lethargic and had seemed sick since October. I had severe headaches, confusion and balance issues, followed by depression and exhaustion. My boyfriend had it acutely and was extremely ill. Convinced it was the flu, we found out it was deadly CO gas, 1000 ppm- a very high, lethal amount. We are grateful to all have made it through, though Eddie and I still struggle with lingering issues.If anyone reading this has had a similar situation, please email me (clangrall@gmail.com) .

We have all moved from the property and have begun the healing process, which will take along time according to doctors. After dealing with Conn's, this the second most awful health scare I've ever experienced.

As I navigate through this new health crisis, I am reminded of the lessons I learned when I had hyperaldosteronism.   Be patient, do research, talk to others who have dealt with your condition, be gentle with yourself, have HOPE, and know this too shall pass with the right treatment.

Perhaps it all is a lesson on how I need to take better care of myself. One thing I learned through this hell is that my remaining right adrenal gland sure is a strong one!

Well, that's about it for now. Remember: Stay strong, be your own patient advocate, know there hope for Conn's, don't give up--focus on becoming an ex-Conn like me and take the time to appreciate all that you have.