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.
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15 comments:
As another female post op Conn's patient, surgery done 4 yrs ago, I can say I strongly feel life is more difficult with only one adrenal. My BP is normal, my life is not.
Maybe if someone is really healthy, living a relatively calm life and most importantly NOT a female in pre or perimenopause...just maybe the one remaining adrenal can function just fine.
I am no longer hypertensive but soon after the adrenalectomy a stealth infection came to the forefront, I developed multiple allergies I didn't have before and became bedridden within a year.
I had Lyme Disease...now the question is did the longstanding unrecognized Hyperaldosteronism weaken my body and alter my HPA axis function so much that the Lyme took hold or was it vice versa?
All I know is my endocrine system is a mess, I am now hypothyroid,prediabetic, lipids keep increasing despite a good diet, cannot lose weight after first rapidly losing 42 pounds then gaining it all plus more again. I have always lived healthily but it doesn't seem to make any difference other than I am not dead yet!
A roller coaster ride for sure and as you say, no one has studied what effects the removal of the diseased adrenal has.
Since the adrenals take over when the ovaries quit can't help but think having only one adds to the stress on the endocrine system
I found your blog by pure accident. My fiance has not been officialy diagnosied with Conn's but this is what they believe he has. We are trying to get into to see a specialist now but where we live at in NM there are not many.
It started two months ago. His hands and feet went numb. He said it felt like he had frost bite. I took him to see the doctor and all the doctor could say was lose some weight and you will be fine. Never did any test. In January the pain was so bad that he begged me to take him to the ER. When we got there the doctor pulled me out and said that we were lucky we brought him in. His potassium levels were so low that his body was literly shutting down.
They gave him high doses of potassium and got his levels back to normal but still did not know why they had dropped. I called my mother back in Delaware and asked if she could do some research from me. She called me back after speaking with one of the endocrinologist that she works with. He said to have him tested for Conn's.
Right now we are taking it day by day. He has his good and his bad days.
Anonymous,
Get your husband to a good endocrinologist that will do the proper testing. Is he fatigued? High BP? If so he very well may have Conn's. Best of luck and let us know how he is doing.
Renne K
I feel your pain, been there with the ovary issues. I believe you are right when you say woman suffer after surgery more due to our reproductive system. Lyme disease on top must be so difficult. It makes me so sad that we are left off after the surgery... I want to see more research in this area. I will keep writing in this blog as long as I can and hopefully more people will come forward with Conn's so we can have a larger voice.
Please be gentle with yourself. ~Carole
Hi Flowerspy, good to see you are still updating this site. I was diagnosed with a 1cm adenoma in my left adrenal the day before your most recent post. As I'm still (relatively!) young, I'm hoping for adrenalectomy also. Reading your words, "If anyone reading this is on the fence about surgery, I say do it," helped me feel more confident in this decision.
I've been blogging my experiences with this in the hopes of helping others as you have done. I'm linking to a lot of your posts, as this seems to be the best information out there for what we are going through!
Wayward Bus,
I wish you much luck with the journey and am glad this blog is helping you. Conn's is a toughie, and unless you've been there, it's so difficult to explain. I was interviewed for a magazine to tell my story, it's called, Harmony, and I am trying to figure out a way to link this to the site. It came out last month and is on new stands in health food stores. Anyway, we need to spread the word and help one another! Thanks for the comment.
I am now 8 months post surgery and feel great. At 6 month post surgery, I began to have dizzy spells and collapse as my blood pressure was going too low. I was put into hospital for a week, given post surgery Fludrocort testing, lots of salt and everything settled. I live in an area of high humidity during summer. I am already feeling a lot better since now having salt and electrolytes on hot, humid days.
I would recommend the surgery to anyone contemplating it.
I had an right adrenalectomy for Conn's over 10 years ago when I was 56 years old. This was in Brisbane Australia which is the closest city to where I live. I have had no problems since then and having normal BP greatly improved my life. I have always lived a fit and healthy lifestyle. I found these postings because my kidneys have been aching for the first time in my life and I started wondering whether having only one adrenal gland could be the cause. I agree that emotional stress has a big effect on me especially during the past 6 months. I would love to hear from anyone who has had the operation so long ago and is about the same age as me (I'm 66 now). Will check my health further and keep you informed.
I'm glad your life is going better since the surgery. I could learn from you! Hang in there, you are doing great!
Just found your blog in searching for information about Conn's. I have not been diagnosed but am going through testing and my endo lists this as one of the possibilities. Have had HBP for over 15 years and debilitating fatigue for a year or more. Having some muscle weakness and urinating like crazy at night for the last month. Also, having constant ringing in my ears for the last few months. Have not seen that on symptom lists though I know everyone is different. My potassium started testing low about 7 months ago and my aldosterone to renin is almost 200:1 in a test done a couple of weeks ago. Creatinine is high after a 24 hr urine test. Have followup with endo next week. Thanks for your personal story. Makes me (and others) feel like maybe I'm not crazy.
I too have hyperaldosteronism. In
November of 2008 I had a complete hysterectomy needing an eppiderell before the procedure to bring down my bp which was "off the charts". Post surgery I was sent home on chlonadine to bring down my bp with a 2 week script and a follow-up in a month with my family doctor. After I finished the med(and not being told that I would need to be 'WEENED" from the chlonadine med)and into my 3rd week after my surgery My fingers on my left hand started tingling and numbness started up my arm while Christmas shopping. Thinking I was having a stroke I immediately went home. Of course this was on a Friday when my doctor's office was closed so I waited until Monday to call.... getting an appointment to see him on Tuesday.At the doctors office my bp was still extremely high and I had not been able to control use of my left arm for days. Needles to say the doctor sent me to the ER for testing directly and being admitted to the hospital. Four days into it, still no diagnoses, my husband and son arranged for me to be sent to another hospital upstate Ohio. This was 4 days before Christmas. Two days and a Team of doctors I was DIAGNOSED.. and treatment started with Aldactone along with several other bp meds. I was released on Christmas Day 2008. I was so blessed to come home to spend Christmas with my family. I'm seeing the same Nephrologist that diagnosed me along with my Family Doctor for treatment. Although surgery is an option...we've yet to dertermine Which Adrenal...we're also monitoring cysts on my right kidney. The same team of Doctor's can't seem to agree on whether or not surgery is the best idea for me right now. The stress levels for me sometimes are unbearable. I'm really fortunate to have found this site.....and realize that I'm not alone with this disease.
Thank you everyone for your posts. I wonder what we all have in common..that contributed to this dis-ease?
Thanks to all who responded to this post...anonymous, you have been through too much, I send you positive, healing energy NOW.
Your issue is very serious. you need some calm and consult to her doctor.
Wow, I am not alone. like Lesley, I am from Brisbane and had surgery 3 years ago to remove my right adrenal gland. Maybe we were at the PA at the same time for appointments even. I left hospital on no meds with normal BP. down sides have been going thru menopause again, apparently the first time was caused by hormonal imbalances. I struggle with Muscle fatigue and find losing weight impossible. But the surgery saved my life, I just have to find a way to get fit now I am healthy :)
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