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
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14 comments:
How long did it take for your pressure to return to normal. I'm reading where it says that it takes 3 - 6 months. Was yours immediate? Did it flunctuate?
Thank you so much for your very informative site. I have avidly followed the ups and downs of your journey, on your blog, yahoo site and Nord Rare Disease. You have inspired me to hang in there during the fluctuating journey of Conns. I see my surgeon soon.
Helen,
Hang in there, you can survive this disease! If you are a candidate for surgery, you will soon be over the madness called Conn's.
I send you well wishes and positive energy.
To anonymous:
My pressure went down the week after surgery, actually a few days after. I believe it can range for different people, but it should go down and regulate within the time you mentioned. The fatigue and depression took me longer to kick--but I am symptom free one year out.
Thank you so much for this blog. I just got out of the hospital for my low potaissum (1.98) it took 4 days to get it back to the normal "low" I've been sick for 2 yrs and could not get any dr's to "hear me" until I went in to have my tubes tied and they found my low potaissum! I then had 5 dr's in my face telling me I am going to die if they don't admitt me! That was pretty scary!
How was your bloating after the surgery...did it go away or just get better?
I gain 20-30 lbs in a matter of months while watching what I ate. Lowered my sodium instake, took out all soft drink (only drank diet anyways, no sugary items)this did not help. I have had all the others too. Up peeing 3-4 times a night plus all day as well. I could not understand why am I so bloated?
I read your blog a couple times in the last six month. I had my adrenal gland out a month ago and I'm coming off my last bp med this week. I went to Barnes in St. Louis and had my AVS done there with no pain. I slept thru the procedure and just babied my hip for a day. Then I went back and had my adrenal removed thru a couple small incisions in my lower back. I was kept overnight after the surgery and didn't need any pain meds except to get comfortable a couple nights so I could fall asleep. Finding the diagnosis was the hardest.
At the time my high blood pressure issues came up the doctors didn't know there was a ratio for my potassium, aldosterone and renin? I was diagnosed with Fibromuscular Dyplasia instead because of an MRI that showed beading on my renal artery. After I had 2 angioplasy's with no improvement, on 3 BP meds, low potassium levels, I was determined something had to get better. I finally got in with a specialist for FMD and they suspected hyperaldosteronism.
I appreciate your comments about being sensitive to salt and sugar because I'm there with you. I can't eat pastries or salty things today because they taste horrible. I thought I was just getting old. My husband thought I was crazy that I can’t eat pastries or syrup for breakfast on weekends but I can eat chocolate like crazy.
Glad you are doing well!
I've really gotta say thanks for this article. They have recently found a tumor on my adrenal gland, and I am, for lack of a better word, happy. Finally there is some possibility of some relief to these insane symptoms I have been living with, pain being the most prominent of them. I have searched the web like mad, trying to find an answer to the actual recovery, once the problem has been identified. From your story, I have hope that I will once again regain a normal life, with the only restrictions being set by what I choose, and not what a am physically limited to.
Thank you for taking the time to help educate us. Those of us who need it, are most appreciative.
Here's looking to a bright future, for me, my wife, and especially for my little girl.
John D.
Thank you so much for your informative blog! After 6 years of being passed from doctor to doctor, I finally found a wonderful hypertension specialist who knew what to do.
I received the call today that my AVS showed only my right adrenal causing the problem. YAY! I am an official candidate for surgery and have never been so excited about a surgery! :)
I have a question for anyone with Conn's reading this.....Has anyone agreed to be a research patient? If so, what was their experience? I have been asked by my specialist to become a research patient before and after surgery. I really want to do it, but would love to hear from someone who has already gone through this.
Thanks again for the blog! It is great! I have found it much more informative than the doctors!! :)
To: Anonymous from 4/26...
I love that you agreed to be a research subject. That was never offered to me, but if it was, I too would have done it. The more we can learn about Conn's the better we can help others.
Congratulations on the upcoming surgery and thank you for your comments. Live healthfully~ Carole
Hi, Thankyou for the blog. I am in the middle of testing and am really having trouble being taken seriously by my endo, can you give me any advice on what I need to do to advocate for. What are the 3 most important things I need to have done to move this along to a diagnosis?
also where can I find the yahoo group?
Thanks in advance
Anonymous 4/30-
Read my post on becoming your own advocate--
http://hyperaldosteronism.blogspot.com/search/label/Be%20Your%20Own%20Patient%20Advocate
3 important things to do:
1)CT scan to determine tumor
2) Saline Suppression to determine renin/aldosterone values
3)AVS to measure how much aldosterone the gland is producing.
Unfortunately, all these tests have an order and its MADDENING having to wait. I encourage you to ask your endo to speed up the process as much as he/she can, but you have to be vigilent with this. Are you on spironolactone or aldactone yet? How about potassium supplements? Let me know and I'll try to help. The entire process took me 7-8 months then surgery was 3 months later. You will learn the definition of patience. Hang in there and let me know how you are doing.
I went 5 or 6 years myself before my second dose of spironolactone brought it down to normal! Seriously I had been in the hospital, er's everywhere so often and no one,I mean no one EVER suspected Conns. Even when I NEVER had a hospital visit with a normal potassiu. Not once. And my pressure averaged 160/130 all day every day. Yet the ER would send me home like that. Now an astute cardiologist found it and that dose of spiro and still doing fine!
Jamie B,
Cardiologists may be the answer for detecting Conn's. I had this disease for 6 years and none of my drs. even flinched with my symptoms... they got lumped into peri-menopause, stress and age (I was 40!). Count yourself lucky that your cardiologist diagnosed the proper care. Best of luck~
I have had this disease my whole life but was just diagnosed a few years ago and it would be nice to have someone to talk to about. My condition is the other type no tumor just severe hypertension 5 pills now on inspra jujst 1 for blood pressure but major side effects from this disease. I finally found a dr that cared enough to send me to a specialist who found it the fatigue is unreal and I had multiple p.e. upper and lower bi latteral in my lungs and now 3 days ago found out I am diabetic. I wonder if all of these are connected thr drs no little or nothing about this condition and its like a huge puzzle just one thing after another the inspra has depleted my testerone so I now do weekly injections, my wife is a nurse or this would have knilled me long ago as my b p readings were 200 over 120 before they found it and all the drs would do was add another bp pill up to five and the saga continues with the fatigue fainting spells and a host of other things so I can relate to your story but its so rare there is no one to talk to that can really relate to what you are going through and after 10 drs and no help the depression takes over because you think you are dying and there are no answers. My email is tfagan30@yahoo.com if you would like to correspond thank you for your blog. Troy.
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