It's almost two years since the adrenalectomy. I've received numerous inquiries about how I feel and handle stress, so I am dedicating this post to those questions.
I'll start by saying I have nothing but gratitude for having the opportunity for surgery. I am off ALL meds (I took 7), and my life has improved substantially. If anyone reading this is on the fence about surgery, I say do it. I may have one adrenal gland, but I am more active now than I was while I had Conn's. I feel like I have a second chance. And I intend to live my life cleaner, healthier and smarter, and so far, so I have been. Yet... there are limitations, and I believe I will have these for life. So I take the good with the bad as long as the bad doesn't involve a hormone called aldosterone.
Now about the stress... as many of you know there is little information about Conn's out there, but there is even less information on life after Conn's and surgery. I have asked doctors and visited all sorts of sites to see what a mono-adrenal life will be like, and guess what? No one knows for sure. Doctor's say there is no problem, but without medical documentation, they really don't know. We are indeed a special bunch.
Here's what I can tell you from my personal experience, emotional stress is harder for me to tolerate than physical. It may be the reverse for others, but I have found when dealing with irate people or those looking to pick a fight, I tend to walk away (flight is better than fight). The past few years were filled with stress, especially with my family. Last fall was a very difficult time for me, I was trying to fix up and sell a house in order to relocate to another state, all the while taking care of an aging parent who was ill. I had a sibling who insisted on making everyone's life miserable through abusive bossiness. After endless interactions left me completely fatigued, I realized I had to subtract myself from the equation in order to take care of my emotional and physical health. So I stopped dealing with her and focused on the care of my parent and my life. It saved me from further anxiety and losing more days catching up to a normal level of energy. Avoiding certain conflicts to survive is the best way after going through six years of stress in getting a diagnosis.
So, do we have to perpetually fly away from all of life's turbulent winds just to survive? I don't know. But I can say getting out of emotionally stressful situations is what I need to do NOW. As much as I want to handle stress and tell bullies off, I know my body can't take it. I also know this is a very isolating disease, most people simply can't understand the effects it has had on us. I am lucky to have a very special man in my life that has been there through thick and thin, when my family wasn't. Confiding in a someone you know you can trust is crucial to healing. I highly suggest this for anyone with Conn's. You NEED to have a supportive soul present.
Now the physical... I work out almost daily and feel stronger each week. The down side of this is: I relocated three months ago to a location 7000 feet above sea-level, so altitude adjustment has played quite a role. I started to feel like the old Conn's days and got very depressed. Sometimes, even just walking has been exhausting. But the longer I'm here, the better that gets! If I feel shaky on the treadmill, I simply get off and go home. But for the past month, I have had incredible energy and am feeling more and more like my old self. I still need to lose weight, but I attribute this more to the incredible food in New Mexico than Conn's!
Hopefully some of this helped those of you about to go through surgery or are on the mend. I hope and pray through time, I will be more equipped at dealing with emotional stress. It can be hard on the ego leaving in the middle of something that goes against your moral grain. But maybe that too is a part of the journey. Having this disease changed my life in ways I have a hard time expressing. I can only hope my words here help and something is learned by us all.
Wednesday, 9 February 2011
Sunday, 24 October 2010
WBAL TV-11 Baltimore television interview: Conn's Disease
Last week, WBAL TV-11 in Baltimore, MD, did a segment for their Woman's Doctor Program featuring my experience with Conn's Disease. I hope more Conn's survivors will come forward to tell their stories in the future--I believe there are a lot more of us out there than is believed.
http://www.wbaltv.com/womansdoctor/25429737/detail.html
https://mail.google.com/mail/?ui=2&ik=55d4692dc0&view=att&th=12be9011f1d029c0&attid=0.1&disp=attd&zw
http://www.wbaltv.com/womansdoctor/25429737/detail.html
https://mail.google.com/mail/?ui=2&ik=55d4692dc0&view=att&th=12be9011f1d029c0&attid=0.1&disp=attd&zw
Tuesday, 14 September 2010
Mystery Illness from the New York Times Magazine, 9.12.10
There was an article in the NYT Magazine last Sunday that caught my attention. Entitled "The Heat of the Night", it dealt with the journey of a man who suffered from a strange nocturnal fever and unexplained weight loss. Doctors visit provided little help as the patient became more confused and concerned. Sound familiar?
Finally, a tumor showed up on a CT scan. Unfortunately, his symptoms were incongruent with type of tumor that was diagnosed. To learn more about his "mystery illness" and ultimate prognosis, go to:
http://www.nytimes.com/2010/09/12/magazine/12FOB-diagnosis-t.html?ref=magazine
While his condition is unrelated to Conn's, I found similarities in his frustration with getting a proper diagnosis. It only goes to show we are not alone. And that reaching out on the internet through blogs can save lives.
Finally, a tumor showed up on a CT scan. Unfortunately, his symptoms were incongruent with type of tumor that was diagnosed. To learn more about his "mystery illness" and ultimate prognosis, go to:
http://www.nytimes.com/2010/09/12/magazine/12FOB-diagnosis-t.html?ref=magazine
While his condition is unrelated to Conn's, I found similarities in his frustration with getting a proper diagnosis. It only goes to show we are not alone. And that reaching out on the internet through blogs can save lives.
Monday, 21 June 2010
A year and a half later...
It's been well over a year since the angry adenoma that wreaked havoc over my system was destroyed by my evil-slaying surgical hero, Dr. Armando Sardi. So much of my life has improved since then as I continue to reclaim my energy and enthusiasm daily, in larger and larger spurts. But there is still something that I deal with that lingers inside, and as much as I feel better physically, I haven't seemed to kick this particular side-effect. Residual depression.
I can thank more than a few of my fellow Conn's survivors for coming out to me here on this blog and on the support sites for making me face this condition. Because of their openess and honesty, I felt compelled to address the problem of survivor's depression or lingering sadness that results after a major surgery. Conn's, in particular, is a disease that effects so much... from brain-fog to memory loss to chronic fatigue...it can leave the patient feeling very low and confused. I can't count how many times my confidence was tested at work and at home. My family thought I was crazy, as did my employees, when on a daily basis, I became confused, forgetting dates and information that was essential to running a business. My belief in myself plummeted a bit, so did my motivation. Now that I can focus and retain detailed information once again, I feel much better, but this change did not take place over night.
If I do the math correctly, I had Conn's for over eight years. That's eight years of walking around in a fog, suffering severe fatigue, feeling hyper-sensitive and ultimately feeling embarrassed of the forgetfulness that became so ritual.
Electrolyte imbalance, that's what living with Conn's does to you. It sounds easy enough to fix--drink some Gatorade, eat loads of bananas and take some more potassium supplements, but as we know that doesn't cut it. Having such an imbalance creates the same in all areas of your well-being, from the physical to the mental. In an early posting on "Tips for living with Conn's", I mentioned getting on anti-depressants. While I went off them after surgery, I'm still not 100% "there." They helped during a difficult time, and now I feel more myself--but not completely yet.
At this point, I still remain very positive. I don't look back and never, ever do I beat myself up over the mistakes and short-comings from Conn's "hormone wars." Bouncing back from any surgical procedure can take time, but for my fellow P.A. peeps, ours will be a recovery filled with much self forgiveness and patience. I believe the depression will disappear completely with time. For now, I move forward with the big plan, focus on all the good things I have in my life, and thank God that I am able to coherently write, educate and help others who have this confusing, destructive disease called Conn's. And yes, I refused to be conned by Conn's.
I can thank more than a few of my fellow Conn's survivors for coming out to me here on this blog and on the support sites for making me face this condition. Because of their openess and honesty, I felt compelled to address the problem of survivor's depression or lingering sadness that results after a major surgery. Conn's, in particular, is a disease that effects so much... from brain-fog to memory loss to chronic fatigue...it can leave the patient feeling very low and confused. I can't count how many times my confidence was tested at work and at home. My family thought I was crazy, as did my employees, when on a daily basis, I became confused, forgetting dates and information that was essential to running a business. My belief in myself plummeted a bit, so did my motivation. Now that I can focus and retain detailed information once again, I feel much better, but this change did not take place over night.
If I do the math correctly, I had Conn's for over eight years. That's eight years of walking around in a fog, suffering severe fatigue, feeling hyper-sensitive and ultimately feeling embarrassed of the forgetfulness that became so ritual.
Electrolyte imbalance, that's what living with Conn's does to you. It sounds easy enough to fix--drink some Gatorade, eat loads of bananas and take some more potassium supplements, but as we know that doesn't cut it. Having such an imbalance creates the same in all areas of your well-being, from the physical to the mental. In an early posting on "Tips for living with Conn's", I mentioned getting on anti-depressants. While I went off them after surgery, I'm still not 100% "there." They helped during a difficult time, and now I feel more myself--but not completely yet.
At this point, I still remain very positive. I don't look back and never, ever do I beat myself up over the mistakes and short-comings from Conn's "hormone wars." Bouncing back from any surgical procedure can take time, but for my fellow P.A. peeps, ours will be a recovery filled with much self forgiveness and patience. I believe the depression will disappear completely with time. For now, I move forward with the big plan, focus on all the good things I have in my life, and thank God that I am able to coherently write, educate and help others who have this confusing, destructive disease called Conn's. And yes, I refused to be conned by Conn's.
Friday, 19 March 2010
One year after the surgery
March 16 marked my one year anniversary for surgery for Conn's (adrenalectomy). I tried to update my progress every few months, although I fell short of doing it quarterly as I had hoped to do. But life happened, which is a good thing, because for too long, it didn't.
The strangest part of my year anniversary was the euphoria I felt. Sure, I am thrilled to be a year out and cured of hyperaldosteronism, but honestly I didn't feel so completely healed up to this exact date. The weather where I live broke, always a help, and the sun replaced the dismal gray I had been battling during the winter. I had been dealing with fatigue here and there, but on March 16, I realized it was pretty much gone. Maybe those doctors knew what they were talking about after all when they told me recovery could take up to a year, (or so).
In all, the major symptoms never came back--the high blood pressure is gone, as is the lowered potassium. The flank pain or kidney pain is also gone as is the dehydration, migraines, confusion (brain fog) and paresthesia. I have more energy than I can remember in a long time and forget this sometimes when I go all day without taking a break. Just typing those words makes me smile :-)
The only thing I still struggle with is my late night schedule (as I write this at midnite). Due to the arrhythmia and cortisol rush I used to get around this time, my sleep schedule was disrupted and I became even more nocturnal than I already am. I am working to try and get my circadian rhythm back to normal, but this is hard. I am artistic by nature and have always loved the night. Now I am trying to love the early morning, without coffee, which is not the easiest.
In terms of living with one adrenal gland, my endo and surgeon both say there are no big problems to worry about. That may be so, however, I have noticed that my energy level can get maxed out quicker. Before and even early on with Conn's, I really pushed myself in my work, which is often very physical. I own a floral design studio that specializes in large events, and after several big functions last September, I passed out on site in a hotel. In my opinion, it seems plausible that it was related to having only one adrenal that was over-taxed. I also had a very hard time shoveling snow this winter. I am in good physical shape and should have been able to keep up with my 50-60 something neighbors!
In terms of the hormones, my God, they are thankfully regulated after 8 years of hell. I no longer feel like I am being attacked or defensive. This was compounded early on when I was involved in a relationship with a bi-polar man (a huge error on my part), which made my already compromised immunity system shatter. I am much calmer these days and feel like my old (new) self. Also, I didn't sweat for at least two years, which was the strangest thing. Now I really perspire and I love it.
A few more observations deal with caffeine and sugar. I can no longer regularly drink coffee. I have become extremely nauseous on several occasions and thrown up--which is a very rare thing for me to do. I have cut back to only 3 cups a week. Sugar is another thing that can affect me very quickly. I've always had sugar cravings, but I can't eat things like I used to. This is probably for the better in the long run. That goes with alcohol too, one drink feels like 3 sometimes, so I cut back to very little on the weekends.
In all, one year can seems like an eternity, but this one flew by. I remain steadfast in my opinion that having the adrenalectomy was the best thing I have ever done for my body. Not taking the 6-7 meds daily is a god-send, but mainly, knowing high blood pressure is a thing of the past is truly a great feeling.
If anyone out there reading my rantings ever has any questions about surgery or just wants to vent, I can be reached here. I started this site for that reason... I only wish I had a site like this to discuss the emotional side-effects I went through. There's so much more to Conn's than meets the eye.
Now, if we can only get Dr. Oz or some medical show to do a story on it. If I was mis-diagnosed for 7 years, I can only imagine how many other people are in the same boat. Our stories need to be heard!
Thanks for the read. I wish anyone with Conn's the very best and hope your journey ends quickly.
Peace~ Carole
The strangest part of my year anniversary was the euphoria I felt. Sure, I am thrilled to be a year out and cured of hyperaldosteronism, but honestly I didn't feel so completely healed up to this exact date. The weather where I live broke, always a help, and the sun replaced the dismal gray I had been battling during the winter. I had been dealing with fatigue here and there, but on March 16, I realized it was pretty much gone. Maybe those doctors knew what they were talking about after all when they told me recovery could take up to a year, (or so).
In all, the major symptoms never came back--the high blood pressure is gone, as is the lowered potassium. The flank pain or kidney pain is also gone as is the dehydration, migraines, confusion (brain fog) and paresthesia. I have more energy than I can remember in a long time and forget this sometimes when I go all day without taking a break. Just typing those words makes me smile :-)
The only thing I still struggle with is my late night schedule (as I write this at midnite). Due to the arrhythmia and cortisol rush I used to get around this time, my sleep schedule was disrupted and I became even more nocturnal than I already am. I am working to try and get my circadian rhythm back to normal, but this is hard. I am artistic by nature and have always loved the night. Now I am trying to love the early morning, without coffee, which is not the easiest.
In terms of living with one adrenal gland, my endo and surgeon both say there are no big problems to worry about. That may be so, however, I have noticed that my energy level can get maxed out quicker. Before and even early on with Conn's, I really pushed myself in my work, which is often very physical. I own a floral design studio that specializes in large events, and after several big functions last September, I passed out on site in a hotel. In my opinion, it seems plausible that it was related to having only one adrenal that was over-taxed. I also had a very hard time shoveling snow this winter. I am in good physical shape and should have been able to keep up with my 50-60 something neighbors!
In terms of the hormones, my God, they are thankfully regulated after 8 years of hell. I no longer feel like I am being attacked or defensive. This was compounded early on when I was involved in a relationship with a bi-polar man (a huge error on my part), which made my already compromised immunity system shatter. I am much calmer these days and feel like my old (new) self. Also, I didn't sweat for at least two years, which was the strangest thing. Now I really perspire and I love it.
A few more observations deal with caffeine and sugar. I can no longer regularly drink coffee. I have become extremely nauseous on several occasions and thrown up--which is a very rare thing for me to do. I have cut back to only 3 cups a week. Sugar is another thing that can affect me very quickly. I've always had sugar cravings, but I can't eat things like I used to. This is probably for the better in the long run. That goes with alcohol too, one drink feels like 3 sometimes, so I cut back to very little on the weekends.
In all, one year can seems like an eternity, but this one flew by. I remain steadfast in my opinion that having the adrenalectomy was the best thing I have ever done for my body. Not taking the 6-7 meds daily is a god-send, but mainly, knowing high blood pressure is a thing of the past is truly a great feeling.
If anyone out there reading my rantings ever has any questions about surgery or just wants to vent, I can be reached here. I started this site for that reason... I only wish I had a site like this to discuss the emotional side-effects I went through. There's so much more to Conn's than meets the eye.
Now, if we can only get Dr. Oz or some medical show to do a story on it. If I was mis-diagnosed for 7 years, I can only imagine how many other people are in the same boat. Our stories need to be heard!
Thanks for the read. I wish anyone with Conn's the very best and hope your journey ends quickly.
Peace~ Carole
Monday, 1 February 2010
Ten months after surgery
It's been ten months since my adrenalectomy. As I mentioned in my last post, things have radically improved, although that arch-enemy of mine, "fatigue", still rears its ugly head from time to time. That said, there is an overall feeling of balance for the most part... even when faced with a stressful "fight or flight" situation, I feel far more prepared to deal with it then I have been in at least six years. There is much less reaction and far more action during times of stress.
Noticeable improvements in ten months post-surgery include:
- Continued low blood pressure each time I go to doctor
- Better sleep habits, no more cortisol rushes or heart palpitations to keep me up
- Ability to do complete work-outs (45 minutes - 1 hr) vs. the 20-25 minute ones I struggled through for the last two years
- More energy for the entire day
- Less memory issues, although I swear by Omega-3 for help with this
- Naps are no longer necessary to get me through the day
- Normal urine color and flow
- No more kidney pain or "flank" pain
- No more bloatedness, which is noticeable in a thinner face and body
- No more tingling or paresthesia in the hands and feet
- A general feeling of balance and calmness
One thing that remains a concern for me is the long-term outlook for those with one adrenal gland. I've had no, and I mean NO, doctors that have been able to tell me what to expect with my mono-gland as I age. I still can't believe there is so little information for us regarding surviving Conn's disease. My dream remains to have more education and exposure for both patients and doctors. Maybe I'll write to Dr. Oz someday. We are a small group, but after going on NORD and Yahoo groups-Hyperaldosteronism, I believe there are more of us out there than we realize, and we need to reach out to each other, even if we've recovered. It can be a brutal disease for so many.
As always, I hope this helps those considering the adrenalectomy or those who are in recovery from surgery. There really is life after Conn's, and from where I'm standing, it's looking really good for the first time in years.
Noticeable improvements in ten months post-surgery include:
- Continued low blood pressure each time I go to doctor
- Better sleep habits, no more cortisol rushes or heart palpitations to keep me up
- Ability to do complete work-outs (45 minutes - 1 hr) vs. the 20-25 minute ones I struggled through for the last two years
- More energy for the entire day
- Less memory issues, although I swear by Omega-3 for help with this
- Naps are no longer necessary to get me through the day
- Normal urine color and flow
- No more kidney pain or "flank" pain
- No more bloatedness, which is noticeable in a thinner face and body
- No more tingling or paresthesia in the hands and feet
- A general feeling of balance and calmness
One thing that remains a concern for me is the long-term outlook for those with one adrenal gland. I've had no, and I mean NO, doctors that have been able to tell me what to expect with my mono-gland as I age. I still can't believe there is so little information for us regarding surviving Conn's disease. My dream remains to have more education and exposure for both patients and doctors. Maybe I'll write to Dr. Oz someday. We are a small group, but after going on NORD and Yahoo groups-Hyperaldosteronism, I believe there are more of us out there than we realize, and we need to reach out to each other, even if we've recovered. It can be a brutal disease for so many.
As always, I hope this helps those considering the adrenalectomy or those who are in recovery from surgery. There really is life after Conn's, and from where I'm standing, it's looking really good for the first time in years.
Saturday, 28 November 2009
Eight months after surgery
It's been eight months since my adrenalectomy. Many people in my NORD Rare Diseases support group have contacted me for status updates. I figured I'd post more here so others not in the group could benefit.
As I mentioned in my last blog, I noticed some effects immediately after surgery. As exhausted as I was in ICU- I still noticed the "brain fog" was gone, and this made me ecstatic. While I was on some heavy duty drugs, I felt I was clear in my thinking and actions, and pretty alert considering I just had major surgery. My blood pressure was all over the place until 2 days later when it dropped lower that it had been in seven years. I was released from the hospital at that point.
Other changes were gradual, for example the polyuria was gone practically immediately. I started having quick bursts of energy within two weeks and got out of the house for a day trip. I fatigued easily though, so I would suggest limiting your physical activities for at least three weeks. As far as steps, do so but slowly. Don't think you will jump back into normal for at least a month.
I felt stronger within a month when I gradually resumed my work out routine at the gym. I no longer felt "confused" or whacked out, a side effect I suffered with a lot for the past two years. I also noticed the migraines had disappeared, as did the dehydration and muscle spasms at night.
Eight months later, there are some concerns that I plan to discuss with my doctor. Mainly- there is still some fatigue. As well, I have a difficult time with coffee (this stinks because I love it so...); I don't process sugar well, I crash immediately on it just as I do with wine or alcohol. My other adrenal seems to still be in recalibration mode, but certain stimulants do not take well. The fatigue is a major concern however. If I am physical and use a lot of stamina for work or other, I'll be ok, but usually have to rest a lot the next day.
Unfortunately, there is little to no information on living with one adrenal gland which frustrates me. There are many of us that have only one, and although we can live normal lives, there are things we should know, for example how long does it take for the remaining gland to recalibrate and assume the functions of the missing gland.
I plan on asking more of these types of questions at my doctors appointment next week and will report back what she says. As far as my surgeon, he told me in September that I was "clinically" cured.
Regardless of my lingering side-effects, when people ask if the adrenalectomy was worth it, I still say- absolutely. Everything about my demeanor has changed for the better, and I almost feel like my old self again, something I haven't felt in over 7 years. Having your electrolytes in balance can seem like the difference between day and night.
As I mentioned in my last blog, I noticed some effects immediately after surgery. As exhausted as I was in ICU- I still noticed the "brain fog" was gone, and this made me ecstatic. While I was on some heavy duty drugs, I felt I was clear in my thinking and actions, and pretty alert considering I just had major surgery. My blood pressure was all over the place until 2 days later when it dropped lower that it had been in seven years. I was released from the hospital at that point.
Other changes were gradual, for example the polyuria was gone practically immediately. I started having quick bursts of energy within two weeks and got out of the house for a day trip. I fatigued easily though, so I would suggest limiting your physical activities for at least three weeks. As far as steps, do so but slowly. Don't think you will jump back into normal for at least a month.
I felt stronger within a month when I gradually resumed my work out routine at the gym. I no longer felt "confused" or whacked out, a side effect I suffered with a lot for the past two years. I also noticed the migraines had disappeared, as did the dehydration and muscle spasms at night.
Eight months later, there are some concerns that I plan to discuss with my doctor. Mainly- there is still some fatigue. As well, I have a difficult time with coffee (this stinks because I love it so...); I don't process sugar well, I crash immediately on it just as I do with wine or alcohol. My other adrenal seems to still be in recalibration mode, but certain stimulants do not take well. The fatigue is a major concern however. If I am physical and use a lot of stamina for work or other, I'll be ok, but usually have to rest a lot the next day.
Unfortunately, there is little to no information on living with one adrenal gland which frustrates me. There are many of us that have only one, and although we can live normal lives, there are things we should know, for example how long does it take for the remaining gland to recalibrate and assume the functions of the missing gland.
I plan on asking more of these types of questions at my doctors appointment next week and will report back what she says. As far as my surgeon, he told me in September that I was "clinically" cured.
Regardless of my lingering side-effects, when people ask if the adrenalectomy was worth it, I still say- absolutely. Everything about my demeanor has changed for the better, and I almost feel like my old self again, something I haven't felt in over 7 years. Having your electrolytes in balance can seem like the difference between day and night.
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