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.
Saturday, 28 November 2009
Wednesday, 3 June 2009
Three months after surgery
The following are my observations of physical changes after three months from surgery~
No more hypertension, normal blood pressure each time it is checked
No medication what-so-ever for adrenal gland
No medication necessary for migraines (they are gone)
No more potassium horse pills
More energy daily, but not complete yet
No noticeable brain fog
My memory is improving
I am making better decisions
No more dehydration
No more polyuria
No heart palpitations/arrhythmia
No tingling limbs
Ability to eat salty foods again- however they are monitored
My defenses are in check, no more extremes due to the electrolyte imbalance
The bloatedness is GONE. In my face, hands and feet as well as the middle section. All less puffy and more normal looking, although weight loss still needed for last 10 lbs.
No more hypertension, normal blood pressure each time it is checked
No medication what-so-ever for adrenal gland
No medication necessary for migraines (they are gone)
No more potassium horse pills
More energy daily, but not complete yet
No noticeable brain fog
My memory is improving
I am making better decisions
No more dehydration
No more polyuria
No heart palpitations/arrhythmia
No tingling limbs
Ability to eat salty foods again- however they are monitored
My defenses are in check, no more extremes due to the electrolyte imbalance
The bloatedness is GONE. In my face, hands and feet as well as the middle section. All less puffy and more normal looking, although weight loss still needed for last 10 lbs.
Monday, 23 March 2009
The adrenalectomy surgery
My Decision:
On March 16, 2009, I had an adrenalectomy to remove both the tumor and the adrenal gland due to Conn's. The main reason for this decision came down to blood pressure. My father died young-ish with complications due to high-blood pressure, I couldn't imagine a life like that. The percentage of curing hypertension through this operation ranges from 60-70%, depending on which medical journal you read or what doctor you talk to. It can seem risky, but most people I met who have had the procedure all had successful outcomes.
The surgical process was more than I expected. One good thing is that it's done laproscopically, sparing the waist of a large scar that would encircle it. I have 4 small incisions on my side and they will probably blend into my skin in a year or so. The process prior to surgery echoes the testing you take to diagnose Conn's in the first place; it's detailed and exhausting. Two weeks before surgery, you will feel like you have been tested for anything and everything under the sun. If after all the testing, all they find is the adrenal tumor, you can feel pretty confident your health will be in check for at least 5 years. Don't misread this; we all are getting older and other things can happen. But you are poked and prodded for at least a year solid to find out what type of tumor you have, and if there's something else wrong with you, there's a good chance they will find it.
Before:
You are admitted.
Blood work/Vitals are taken
Pregnancy Test for women
Surgeon comes in to explain procedure
You will walk into the operating room
I.V. for anesthesia
The wait time is 45 minutes- hour before you get into operating room depending on the surgery schedule.
After:
You will be in intensive care immediately following the surgery. I was hooked up to every machine I had ever seen, it was very intimidating. The pain was profuse, but Dilaudid is a just nurse call away. Sleep is almost impossible, the machines you are attached to are mainly what keep you up. You will be hooked up to a blood pressure monitor, 2 I.V.'s- one for fluids and one for pain medication, a cardiac monitor, and a catheter. You will also have leg circulation pumps to make sure you don't get blood clots. It's important to move your legs around to prevent these.
The second day, your surgeon comes in and reads your vitals. My BP was dropping steadily, so they moved me to another floor. They also took me off most of the machines, and removed the catheter. Once I was in my room, I slept for what seemed to be an eternity. An immediate improvement I noticed that day was the absence of the awful 'brain fog'. For at least 2 years, I have felt like I wasn't here, like I was floating and stuck just under the radar cloud of human life--basically, caught in a fog. Feeling like this brought me down so low I became reclusive. Many Conn's sufferers state this as a major problem. I still get infuriated reading symptoms of Conn's from sites claiming the only real symptom is high blood pressure (no thank you, Dartmouth/Hitchcock Medical Center). I'm here to say that is utter nonsense. Conn's patients suffer from so much more. To no longer feel brain-fog was an elation.
They released me on the third day even though I still felt like hell. I honestly don't feel I was ready but that's our system. Once I got home, it was rest, rest, rest and drugs, drugs, drugs. I had a very hard time climbing steps and was told not to (an impossibility in my house). You really need someone there to help you, so if you are alone, this is a time to call in the favors.
The pain started to ease up within a week. You will not be running to the bathroom as much and the dehydration is gone. If you are like me and get antsy quick, you'll want to move around. No steps for a week means what it says. I challenged this (of course) and paid for it with lots of pain. Take the time to rest, at least 2 weeks.
Immediate Noticeable changes:
Changes in the remaining adrenal are noticeable within a few weeks. I started to get energy bursts within one and a half week. I can't begin to explain my euphoria over this. Another good, though odd, change was sweating-- I didn't sweat the last 2 years, and now I perspire quite easily. There is a finally a normal frequency of nightly bathroom visits-- instead of 4-5 times, I'm back to my one nocturnal trip. The migraines are completely gone, hallelujah! Major Bonus: I no longer take 5 medications, which were stopped immediately post-surgery. There are now new things like hormones kicking in which can be exciting. Overall, there is a renewed sense of well-being...and hope.
Overall Opinion:
I am thrilled I had the opportunity to remove my adrenal tumor. After meeting others who are considering it, I can wholeheartedly say I recommend this surgery. I personally thank two women (Rose and Tracy) who helped point me in this right direction. The endless conversations I had with Rose were highly appreciated. She had Conn's, and had the worst symptoms I had ever heard of, including 5 visits to emergency rooms for arrythmia and low potassium. After her operation, she told me she felt 15 years younger, I now understand what she meant.
It's been a long road getting here, but there is an end-- and it is filled with the physical well-being Conn's robbed me of six years ago when it first attacked my left gland. Major surgery is never an easy decision nor is it easy to undergo. But if it's an option, I say look into it, ask others who have had it and weigh your thoughts. Hopefully this surgical recap will help any of you that have an aldosterone-producing adenoma and are on the fence.
On March 16, 2009, I had an adrenalectomy to remove both the tumor and the adrenal gland due to Conn's. The main reason for this decision came down to blood pressure. My father died young-ish with complications due to high-blood pressure, I couldn't imagine a life like that. The percentage of curing hypertension through this operation ranges from 60-70%, depending on which medical journal you read or what doctor you talk to. It can seem risky, but most people I met who have had the procedure all had successful outcomes.
The surgical process was more than I expected. One good thing is that it's done laproscopically, sparing the waist of a large scar that would encircle it. I have 4 small incisions on my side and they will probably blend into my skin in a year or so. The process prior to surgery echoes the testing you take to diagnose Conn's in the first place; it's detailed and exhausting. Two weeks before surgery, you will feel like you have been tested for anything and everything under the sun. If after all the testing, all they find is the adrenal tumor, you can feel pretty confident your health will be in check for at least 5 years. Don't misread this; we all are getting older and other things can happen. But you are poked and prodded for at least a year solid to find out what type of tumor you have, and if there's something else wrong with you, there's a good chance they will find it.
Before:
You are admitted.
Blood work/Vitals are taken
Pregnancy Test for women
Surgeon comes in to explain procedure
You will walk into the operating room
I.V. for anesthesia
The wait time is 45 minutes- hour before you get into operating room depending on the surgery schedule.
After:
You will be in intensive care immediately following the surgery. I was hooked up to every machine I had ever seen, it was very intimidating. The pain was profuse, but Dilaudid is a just nurse call away. Sleep is almost impossible, the machines you are attached to are mainly what keep you up. You will be hooked up to a blood pressure monitor, 2 I.V.'s- one for fluids and one for pain medication, a cardiac monitor, and a catheter. You will also have leg circulation pumps to make sure you don't get blood clots. It's important to move your legs around to prevent these.
The second day, your surgeon comes in and reads your vitals. My BP was dropping steadily, so they moved me to another floor. They also took me off most of the machines, and removed the catheter. Once I was in my room, I slept for what seemed to be an eternity. An immediate improvement I noticed that day was the absence of the awful 'brain fog'. For at least 2 years, I have felt like I wasn't here, like I was floating and stuck just under the radar cloud of human life--basically, caught in a fog. Feeling like this brought me down so low I became reclusive. Many Conn's sufferers state this as a major problem. I still get infuriated reading symptoms of Conn's from sites claiming the only real symptom is high blood pressure (no thank you, Dartmouth/Hitchcock Medical Center). I'm here to say that is utter nonsense. Conn's patients suffer from so much more. To no longer feel brain-fog was an elation.
They released me on the third day even though I still felt like hell. I honestly don't feel I was ready but that's our system. Once I got home, it was rest, rest, rest and drugs, drugs, drugs. I had a very hard time climbing steps and was told not to (an impossibility in my house). You really need someone there to help you, so if you are alone, this is a time to call in the favors.
The pain started to ease up within a week. You will not be running to the bathroom as much and the dehydration is gone. If you are like me and get antsy quick, you'll want to move around. No steps for a week means what it says. I challenged this (of course) and paid for it with lots of pain. Take the time to rest, at least 2 weeks.
Immediate Noticeable changes:
Changes in the remaining adrenal are noticeable within a few weeks. I started to get energy bursts within one and a half week. I can't begin to explain my euphoria over this. Another good, though odd, change was sweating-- I didn't sweat the last 2 years, and now I perspire quite easily. There is a finally a normal frequency of nightly bathroom visits-- instead of 4-5 times, I'm back to my one nocturnal trip. The migraines are completely gone, hallelujah! Major Bonus: I no longer take 5 medications, which were stopped immediately post-surgery. There are now new things like hormones kicking in which can be exciting. Overall, there is a renewed sense of well-being...and hope.
Overall Opinion:
I am thrilled I had the opportunity to remove my adrenal tumor. After meeting others who are considering it, I can wholeheartedly say I recommend this surgery. I personally thank two women (Rose and Tracy) who helped point me in this right direction. The endless conversations I had with Rose were highly appreciated. She had Conn's, and had the worst symptoms I had ever heard of, including 5 visits to emergency rooms for arrythmia and low potassium. After her operation, she told me she felt 15 years younger, I now understand what she meant.
It's been a long road getting here, but there is an end-- and it is filled with the physical well-being Conn's robbed me of six years ago when it first attacked my left gland. Major surgery is never an easy decision nor is it easy to undergo. But if it's an option, I say look into it, ask others who have had it and weigh your thoughts. Hopefully this surgical recap will help any of you that have an aldosterone-producing adenoma and are on the fence.
Friday, 23 January 2009
What the adrenalectomy surgery entails
Having surgery is my final suggested step. As my adrenal adenoma is unilateral (on one adrenal), I am a good candidate. Both Dr. Quinlan and Dr. Sardi agreed it was the best route for me to take to end this horrible hormonal ride. Why? Dr. Sardi explained why in very simple terms: it will more than likely cure my hypertension. It's not 100%, but he said the success rate is high and well worth the operation. After reading about the battles my fellow Conn's sufferers have had on the Yahoo Hyperaldosteronism Support group, struggling with up to 4 high BP meds daily, my decision was made. When I researched the long term effects of high blood pressure, I knew I didn't want live in fear that something awful could happen.
Another bonus is I will never have to take potassium (horse pills) supplements or continue on the spironolactone. I had originally dreaded taking spiro since the beginning, but it drastically helps, however I never want to have to rely on a drug to make me feel like a member of the human race ever again. I will also be able to hopefully cut out 2 other medications I've been on when the symptoms began. Being practically medication free is euphoric news to me.
As far as surgeons, I managed to get extremely lucky. Dr. Sardi performed one of the first Conn's related adrenalectomies and studied with the doctor the disease was named after-Dr. Jerome Conn. And the fact that Spanish is his first language is music to my ears. I expect to wake up after surgery completely bi-lingual :-)
Please note, while I have decided to go the route of surgery, it's not for everybody. Some of my fellow Conn's sufferers may have bilateral tumors or simply choose to not have surgery and continue on with the spironolactone, potassium supplements and blood pressure meds. I support each and every one them, no matter what decision they make. Living with Conn's is a difficult journey. No one is here to judge or give advice. My hope with sharing my decision for surgery is to continue to give viable options in winning the battle with Conn's.
The Laparoscopic Adrenalectomy~
Description:
The laparoscopic approach for adrenal resection allows small to moderately sized tumors to be removed using scopes and very small incisions. This technique is tolerated very well and has been shown to have the least amount of postoperative pain and require the shortest hospital stay. This is now the preferred method for removal of small to moderate size adrenal tumors whether they produce hormones or not.
How It's Done:
The surgeon makes a series of small ( 1/4 to 3/4 inch) incisions instead of making one large incision. This allows the surgeon access to the abdominal contents where he operates using specialized instruments. One of these instruments instills air into the abdominal cavity to blow it up (like a balloon but only under modest pressure). This instillation of air makes it easier to work since the intestines and other organs will fall away from the tissues which are being examined. A camera is then placed into the abdominal cavity which allows the surgeon to see what he is doing. The remainder of the small holes (ports) have long instruments placed through them into the abdomen for the actual dissecting of tissues. During the dissection, the pancreas and spleen must be lifted up to allow the surgeon access to the adrenal.
The adrenal vein which is smaller than the renal vein, has clips placed on it so it can be cut without bleeding. Once the adrenal artery and vein are identified, clipped, and then cut, the adrenal gland itself is dissected off of the kidney and then removed. Surgeons will put a small cloth bag through a port and into the abdominal cavity. The adrenal tumor is placed into this bag which makes it easier to remove through the relatively small skin incisions and ports.
For more in depth (and sometimes gruesome) details on this procedure, go to: http://www.endocrineweb.com/laparo.html
If you live in the Baltimore/D.C. area and need to have this done, contact:
Dr. Armando Sardi
227 St Paul Place
4th Floor
Baltimore, MD 21202
410.332.9294
Another bonus is I will never have to take potassium (horse pills) supplements or continue on the spironolactone. I had originally dreaded taking spiro since the beginning, but it drastically helps, however I never want to have to rely on a drug to make me feel like a member of the human race ever again. I will also be able to hopefully cut out 2 other medications I've been on when the symptoms began. Being practically medication free is euphoric news to me.
As far as surgeons, I managed to get extremely lucky. Dr. Sardi performed one of the first Conn's related adrenalectomies and studied with the doctor the disease was named after-Dr. Jerome Conn. And the fact that Spanish is his first language is music to my ears. I expect to wake up after surgery completely bi-lingual :-)
Please note, while I have decided to go the route of surgery, it's not for everybody. Some of my fellow Conn's sufferers may have bilateral tumors or simply choose to not have surgery and continue on with the spironolactone, potassium supplements and blood pressure meds. I support each and every one them, no matter what decision they make. Living with Conn's is a difficult journey. No one is here to judge or give advice. My hope with sharing my decision for surgery is to continue to give viable options in winning the battle with Conn's.
The Laparoscopic Adrenalectomy~
Description:
The laparoscopic approach for adrenal resection allows small to moderately sized tumors to be removed using scopes and very small incisions. This technique is tolerated very well and has been shown to have the least amount of postoperative pain and require the shortest hospital stay. This is now the preferred method for removal of small to moderate size adrenal tumors whether they produce hormones or not.
How It's Done:
The surgeon makes a series of small ( 1/4 to 3/4 inch) incisions instead of making one large incision. This allows the surgeon access to the abdominal contents where he operates using specialized instruments. One of these instruments instills air into the abdominal cavity to blow it up (like a balloon but only under modest pressure). This instillation of air makes it easier to work since the intestines and other organs will fall away from the tissues which are being examined. A camera is then placed into the abdominal cavity which allows the surgeon to see what he is doing. The remainder of the small holes (ports) have long instruments placed through them into the abdomen for the actual dissecting of tissues. During the dissection, the pancreas and spleen must be lifted up to allow the surgeon access to the adrenal.
The adrenal vein which is smaller than the renal vein, has clips placed on it so it can be cut without bleeding. Once the adrenal artery and vein are identified, clipped, and then cut, the adrenal gland itself is dissected off of the kidney and then removed. Surgeons will put a small cloth bag through a port and into the abdominal cavity. The adrenal tumor is placed into this bag which makes it easier to remove through the relatively small skin incisions and ports.
For more in depth (and sometimes gruesome) details on this procedure, go to: http://www.endocrineweb.com/laparo.html
If you live in the Baltimore/D.C. area and need to have this done, contact:
Dr. Armando Sardi
227 St Paul Place
4th Floor
Baltimore, MD 21202
410.332.9294
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