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 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
Thursday, 9 July 2009
Adrenalectomy Surgery for Conn's Disease
Back in March, I had an adrenalectomy to remove both the tumor and the adrenal gland due to Conn's. It's taken me a while to write, I needed to step away from illness for a while. I am happy to report I am 100% cured and off all meds that I was put on for hyperaldosteronism. It feels a little surreal, after suffering with potassium issues and god knows all the other symptoms this awful disease brings with it. It has taken me roughly 5 months to feel serious improvements, although my blood pressure dropped the day after surgery. This alone I consider an amazing gift, curing my high BP was the main reason I opted to have surgery. The percentage of curing hypertension through this operation ranges from 60-70%, depending on which medical journal you read. It can seem risky, but most I have spoken with who have had the procedure were also successful.
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. Once you've had surgery, that fear will hopefully dissipate. You've experienced enough anxiety to last a lifetime-- after your adrenalectomy, it's time for peace and to get on with your life.
These are the things you'll need to do before surgery:
- Many, many, many doctors visits- to your endocrinologist, surgeon
and G.P.
- Adrenal Vein Sampling test which determines if you are a
candidate for surgery
- Blood work, bi-weekly at times
- A Lung x-ray
- Another CT scan
- EKG
- Urinalysis- lots, even on the day of depending on your hospital
and sex (women for pregnancy)
After the surgery:
You will be in intensive care immediately following the surgery. I was hooked up to every machine I had ever seen on t.v., 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. The important thing to do is move your legs around to prevent clots and call for help if you are in severe pain. My I.V. ran out and it took the nurse a small lifetime to replace it. This is one of those times where you have to be persistent, even if you feel like hell. You bear the right to be as pushy and obnoxious as possible when you are in a hospital in tremendous pain.
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 take you off most of the machines, and remove 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 (i.e.- The 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 a welcome change.
They released me on the third day even though I still felt like crap--welcome to U.S. Healthcare. Once I got home, it was rest, rest, rest and drugs, drugs, drugs. You really need someone there to help you, so if you are alone, this is a time to call in the favors.
The pain starts 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.
Other noticeable changes:
You will feel changes in the remaining adrenal which becomes noticeable within the next 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 now a normal frequency of nightly bathroom visits-- instead of 4-5 times, I'm back to my one nocturnal trip. The migraines are gone, helleujah. 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.
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 right 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.
~Life without an adrenal gland/3 Months Later~
No hypertension, normal blood pressure
No meds for adrenal gland
No meds for migraines
No potassium horse pills
More energy
No brain fog
Memory improving
Better decision making
No dehydration
No 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 electrolye imbalance
The bloatedness is GONE. In my face, hands and feet as well as the middle section. All less puffy and more normal.
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. Once you've had surgery, that fear will hopefully dissipate. You've experienced enough anxiety to last a lifetime-- after your adrenalectomy, it's time for peace and to get on with your life.
These are the things you'll need to do before surgery:
- Many, many, many doctors visits- to your endocrinologist, surgeon
and G.P.
- Adrenal Vein Sampling test which determines if you are a
candidate for surgery
- Blood work, bi-weekly at times
- A Lung x-ray
- Another CT scan
- EKG
- Urinalysis- lots, even on the day of depending on your hospital
and sex (women for pregnancy)
After the surgery:
You will be in intensive care immediately following the surgery. I was hooked up to every machine I had ever seen on t.v., 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. The important thing to do is move your legs around to prevent clots and call for help if you are in severe pain. My I.V. ran out and it took the nurse a small lifetime to replace it. This is one of those times where you have to be persistent, even if you feel like hell. You bear the right to be as pushy and obnoxious as possible when you are in a hospital in tremendous pain.
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 take you off most of the machines, and remove 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 (i.e.- The 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 a welcome change.
They released me on the third day even though I still felt like crap--welcome to U.S. Healthcare. Once I got home, it was rest, rest, rest and drugs, drugs, drugs. You really need someone there to help you, so if you are alone, this is a time to call in the favors.
The pain starts 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.
Other noticeable changes:
You will feel changes in the remaining adrenal which becomes noticeable within the next 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 now a normal frequency of nightly bathroom visits-- instead of 4-5 times, I'm back to my one nocturnal trip. The migraines are gone, helleujah. 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.
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 right 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.
~Life without an adrenal gland/3 Months Later~
No hypertension, normal blood pressure
No meds for adrenal gland
No meds for migraines
No potassium horse pills
More energy
No brain fog
Memory improving
Better decision making
No dehydration
No 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 electrolye imbalance
The bloatedness is GONE. In my face, hands and feet as well as the middle section. All less puffy and more normal.
Thursday, 29 January 2009
Tips for living with Conn's
The following tips may not be for everyone, but they have greatly enhanced my daily routine while living with primary hyperaldosteronism.
** Get a really good endocrinologist. This is crucial. Not all endocrinologists understand or have experience with Conn's. Some even dismiss it as a disease that simply requires meds and little else. You owe it to yourself to find an expert. It took me 3 times to find the right one.
*Get a second opinion if you feel your doctor isn't listening to the severity of your symptoms or helping you. Ask friends/family whomever you know that have been to endocrinologists who they recommend. Personal referrals are the best.
* Research as much as possible about Conn's on your own. I've learned a lot on the internet and through support groups.
* Join a support group, they really help. These are two good ones:
http://health.groups.yahoo.com/group/hyperaldosteronism/
http://www.inspire.com/groups/rare-disease/discussion/conns-syndrome-hyperaldosteronism/
* Get your blood pressure checked regularly. Your endo and other doctors should do this each time you go in.
* Insist on getting all your results from your endo. The more you inform yourself about this disease, the more you will be able to manage it or get proper treatment.
* Avoid as much as possible salt and sugary products. It's hard if you go out to dine as most restaurants use a high content of salt in the preparation of food. Start reading labels for sodium percentages, this goes for sugar, too. Foods to avoid (I know, this part hurts...) Pizza, some soups--they can have a lot of salt, Chinese/Thai food, sugar covered sweets- donuts, candy, cookies, bacon/ham or other cured meats, fried foods, salty peanuts or other nuts (try to get them unsalted if you can), some popcorn that has salt, all sodas.
* Eat more fruits and vegetables and stay as far a way from the above list as possible. You have a disease where you retain water, eating those foods will make you feel worse and swell more.
* Drink lots of water. Also, drinks with electrolytes are great. Drink at least twice a day-- Gatorade or Smartwater, both are good choices. There are others too, read labels!
* Avoid caffeine, or cut back on it as much as possible.
* Develop or maintain a daily routine and do your best to stick to it--even if you have to push yourself to get out of bed. Try and get up at the same time, try and go to bed at a reasonable time--although this can be very hard if you suffer from insomnia, which is a side-effect of Conn's. But having a routine really helps you to feel more in control of yourself when there's an insidious disease trying to control you.
* Avoid alcohol, or cut back if you drink. One drink can feel like three, seriously.
* Start a work out routine if you never have. You will be exhausted most of the time and really have to focus on doing this, but the more you work out, the better it is for your heart and high blood pressure. It also helps with the water retention. Do this at least 3 times a week. (I swear by it)
* Tell all of your other doctors that you have Conn's Syndrome. The more they know the better. Most other doctors may not even know what it is, so you'll be educating them. This also helps with the management of prescriptions-- your other doctors need to know that you are on spironolatone/aldactone/other potassium sparing diuretic, or taking potassium supplements and high blood pressure meds.
* Take your BP meds daily, don't ever skip.
* Make sure if your doctor is suggesting surgery, that he/she has you take an Adrenal Vein Sampling test, (A.V.S.). This is crucial to determine if the tumor is unilateral or on both adrenals. You wouldn't want to go through surgery only to find out later that your other adrenal is also producing too much aldosterone. If you have the A.V.S., make sure the interventional radiologist performing it has a background of doing these tests. This is important--you don't, I repeat, DON'T want to have to go through another A.V.S. test. They are painful and take a lot of time (as well, they are expensive).
* Never take other diuretics, for example diet pills. You'll lose potassium.
*While this may be hard for some (or maybe unnecessary), I do suggest going on anti-depressants. Conn's is a disease that messes with your hormones, even if it's the hormone aldosterone. When there's an imbalance with your electrolytes, it can affect you over time. The exhaustion and brain fog is enough to affect anybody, as is insomnia.
* Confide in a really good friend or lover about your condition. Everybody varies in the severity of symptoms, but there will be times you will feel down, out of it, forgetful and just plain exhausted. Having a confidant really helps. It may even be someone you don't know very well, like an on-line friend. But reach out-- you really need to be supported right now.
* If you choose to manage your Conn's with a life-long commitment to medication, find out as much as possible about the long-term effects. Ask doctors or even better, other Conn's sufferes who have chosen this route. This goes for surgery as well. The more you ask, the more you'll know how to live with Conn's.
** Get a really good endocrinologist. This is crucial. Not all endocrinologists understand or have experience with Conn's. Some even dismiss it as a disease that simply requires meds and little else. You owe it to yourself to find an expert. It took me 3 times to find the right one.
*Get a second opinion if you feel your doctor isn't listening to the severity of your symptoms or helping you. Ask friends/family whomever you know that have been to endocrinologists who they recommend. Personal referrals are the best.
* Research as much as possible about Conn's on your own. I've learned a lot on the internet and through support groups.
* Join a support group, they really help. These are two good ones:
http://health.groups.yahoo.com/group/hyperaldosteronism/
http://www.inspire.com/groups/rare-disease/discussion/conns-syndrome-hyperaldosteronism/
* Get your blood pressure checked regularly. Your endo and other doctors should do this each time you go in.
* Insist on getting all your results from your endo. The more you inform yourself about this disease, the more you will be able to manage it or get proper treatment.
* Avoid as much as possible salt and sugary products. It's hard if you go out to dine as most restaurants use a high content of salt in the preparation of food. Start reading labels for sodium percentages, this goes for sugar, too. Foods to avoid (I know, this part hurts...) Pizza, some soups--they can have a lot of salt, Chinese/Thai food, sugar covered sweets- donuts, candy, cookies, bacon/ham or other cured meats, fried foods, salty peanuts or other nuts (try to get them unsalted if you can), some popcorn that has salt, all sodas.
* Eat more fruits and vegetables and stay as far a way from the above list as possible. You have a disease where you retain water, eating those foods will make you feel worse and swell more.
* Drink lots of water. Also, drinks with electrolytes are great. Drink at least twice a day-- Gatorade or Smartwater, both are good choices. There are others too, read labels!
* Avoid caffeine, or cut back on it as much as possible.
* Develop or maintain a daily routine and do your best to stick to it--even if you have to push yourself to get out of bed. Try and get up at the same time, try and go to bed at a reasonable time--although this can be very hard if you suffer from insomnia, which is a side-effect of Conn's. But having a routine really helps you to feel more in control of yourself when there's an insidious disease trying to control you.
* Avoid alcohol, or cut back if you drink. One drink can feel like three, seriously.
* Start a work out routine if you never have. You will be exhausted most of the time and really have to focus on doing this, but the more you work out, the better it is for your heart and high blood pressure. It also helps with the water retention. Do this at least 3 times a week. (I swear by it)
* Tell all of your other doctors that you have Conn's Syndrome. The more they know the better. Most other doctors may not even know what it is, so you'll be educating them. This also helps with the management of prescriptions-- your other doctors need to know that you are on spironolatone/aldactone/other potassium sparing diuretic, or taking potassium supplements and high blood pressure meds.
* Take your BP meds daily, don't ever skip.
* Make sure if your doctor is suggesting surgery, that he/she has you take an Adrenal Vein Sampling test, (A.V.S.). This is crucial to determine if the tumor is unilateral or on both adrenals. You wouldn't want to go through surgery only to find out later that your other adrenal is also producing too much aldosterone. If you have the A.V.S., make sure the interventional radiologist performing it has a background of doing these tests. This is important--you don't, I repeat, DON'T want to have to go through another A.V.S. test. They are painful and take a lot of time (as well, they are expensive).
* Never take other diuretics, for example diet pills. You'll lose potassium.
*While this may be hard for some (or maybe unnecessary), I do suggest going on anti-depressants. Conn's is a disease that messes with your hormones, even if it's the hormone aldosterone. When there's an imbalance with your electrolytes, it can affect you over time. The exhaustion and brain fog is enough to affect anybody, as is insomnia.
* Confide in a really good friend or lover about your condition. Everybody varies in the severity of symptoms, but there will be times you will feel down, out of it, forgetful and just plain exhausted. Having a confidant really helps. It may even be someone you don't know very well, like an on-line friend. But reach out-- you really need to be supported right now.
* If you choose to manage your Conn's with a life-long commitment to medication, find out as much as possible about the long-term effects. Ask doctors or even better, other Conn's sufferes who have chosen this route. This goes for surgery as well. The more you ask, the more you'll know how to live with Conn's.
Friday, 23 January 2009
Surgery, the final test
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
Wednesday, 21 January 2009
The Tests You Will Take
You may already be diagnosed with P.H. If so you will have to go through a very long series of tests before they can give you the proper treatment, which may include surgery. It can take less time if you have a super-endocrinologist who really understands Conn's and wants to help you get better fast. These types of doctors are rare and hard to find. And if you are like me, you will find yourself at the mercy of the doctors offices, not just your doctor, and let me tell you, those medical staff people can make or break you. They have far too much power for so little training. My endocrinologist's office has made numerous errors, including making appointments before having me get blood work or urine collection. And then they make you feel like getting an appointment (after they screwed up, mind you) is a privilege. It's not, and it is your right as a patient. Wasted time can cost you a lot when you are in pain and feel hopelessly off-kilter. You need to become your own advocate (see my below blog on helpful tips with that).
My second endocrinologist (I'm on my 3rd), told me if I didn't follow the order of the tests, it would seriously delay diagnosis and treatment. He was right on that accord. But what he forgot to tell me was what to do in the middle of all the tests. How do I get through my days when I can barely concentrate or remember simple things. Unfortunately, I had to take care of all that on my own, and it's been a very long, sometimes depressing road. If I may be so bold--I recommend going on anti-depressants while you are undergoing all these tests. It can take up to a year to make the right diagnosis and you need to take care of your emotional well-being in the meantime. I've never been a huge fan of them, but recently I feel they may have saved my life. Each patient is different so it's best to talk to your G.P., maybe not your endo because he's only there to deal with your endocrine system, not your head. However, if your endo is an empathetic person, it's certainly worth asking.
In the meantime, here is a list of tests that most endocrinlogists have you take before making a decision about surgery vs. a life-long commitment to medication. The tests can start out in different order with different doctors.
Hyperaldosteronism Tests:
1) Lots of blood work which may be requested weekly or bi-weekly at times.
2) Blood renin tests that are sometimes done in conjunction with the regular blood work.
3)CT scan. This is how they found my tumor, although if your doctor suspects P.A., he will have you take this to be sure.
4) MRI- A surgeon will often request this to see the tumor better (CT's can be rough).
5)Saline-Suppression Test, or Oral Salt Loading Test (it's usually either/or)
6)24-hour urine collection: The test is done to see how much aldosterone is released into your urine.
7)Fludrocortisone suppression test (FST). After you've followed a high-sodium diet and taken fludrocortisone — which mimics the action of aldosterone — for three days, aldosterone levels in your blood are measured.
8)Adrenal Vein Sampling: This is the most reliable test for determining the cause of primary aldosteronism. A radiologist draws blood from both your right and left adrenal veins and compares the two samples. Aldosterone levels that are significantly higher on one side indicate the presence of an aldosteronoma on that side. Aldosterone levels that are similar on both sides point to overactivity in both glands-(this is not great news).
9) Pheochromocytoma Urine Collection: A pheochromocytoma is a rare catecholamine-secreting tumor. Tumors that form outside the adrenal gland are termed extra-adrenal pheochromocytomas or paragangliomas. Because of excessive catecholamine secretion, pheochromocytomas may precipitate life-threatening hypertension or cardiac arrhythmias. If the diagnosis of a pheochromocytoma is overlooked, the consequences could be disastrous, even fatal; however, if a pheochromocytoma is found, it is potentially curable. You will take a urine test (pee in a jug for a day) to determine this.
There may even be more, but thus far these are the ones I have taken. I'm off to my endo tomorrow for results on the AVS and urine collection. Am nervous but hopeful that this will all be over sooner than later.
My second endocrinologist (I'm on my 3rd), told me if I didn't follow the order of the tests, it would seriously delay diagnosis and treatment. He was right on that accord. But what he forgot to tell me was what to do in the middle of all the tests. How do I get through my days when I can barely concentrate or remember simple things. Unfortunately, I had to take care of all that on my own, and it's been a very long, sometimes depressing road. If I may be so bold--I recommend going on anti-depressants while you are undergoing all these tests. It can take up to a year to make the right diagnosis and you need to take care of your emotional well-being in the meantime. I've never been a huge fan of them, but recently I feel they may have saved my life. Each patient is different so it's best to talk to your G.P., maybe not your endo because he's only there to deal with your endocrine system, not your head. However, if your endo is an empathetic person, it's certainly worth asking.
In the meantime, here is a list of tests that most endocrinlogists have you take before making a decision about surgery vs. a life-long commitment to medication. The tests can start out in different order with different doctors.
Hyperaldosteronism Tests:
1) Lots of blood work which may be requested weekly or bi-weekly at times.
2) Blood renin tests that are sometimes done in conjunction with the regular blood work.
3)CT scan. This is how they found my tumor, although if your doctor suspects P.A., he will have you take this to be sure.
4) MRI- A surgeon will often request this to see the tumor better (CT's can be rough).
5)Saline-Suppression Test, or Oral Salt Loading Test (it's usually either/or)
6)24-hour urine collection: The test is done to see how much aldosterone is released into your urine.
7)Fludrocortisone suppression test (FST). After you've followed a high-sodium diet and taken fludrocortisone — which mimics the action of aldosterone — for three days, aldosterone levels in your blood are measured.
8)Adrenal Vein Sampling: This is the most reliable test for determining the cause of primary aldosteronism. A radiologist draws blood from both your right and left adrenal veins and compares the two samples. Aldosterone levels that are significantly higher on one side indicate the presence of an aldosteronoma on that side. Aldosterone levels that are similar on both sides point to overactivity in both glands-(this is not great news).
9) Pheochromocytoma Urine Collection: A pheochromocytoma is a rare catecholamine-secreting tumor. Tumors that form outside the adrenal gland are termed extra-adrenal pheochromocytomas or paragangliomas. Because of excessive catecholamine secretion, pheochromocytomas may precipitate life-threatening hypertension or cardiac arrhythmias. If the diagnosis of a pheochromocytoma is overlooked, the consequences could be disastrous, even fatal; however, if a pheochromocytoma is found, it is potentially curable. You will take a urine test (pee in a jug for a day) to determine this.
There may even be more, but thus far these are the ones I have taken. I'm off to my endo tomorrow for results on the AVS and urine collection. Am nervous but hopeful that this will all be over sooner than later.
Thursday, 15 January 2009
Becoming your Own Patient Advocate
Once I was diagnosed with primary hyperaldosteronism, I thought I was home free. I had a diagnosis after all, what more was there going to be besides a prescription or two and some follow up visits? Boy was I was wrong. There was so much more, including endless blood work, AVS tests, saline suppression testing and urine screening tests. And then there were the doctors, health insurance companies, prescription medications, family discussions and my job. I needed help trying to balance everything.
What you Need to Know
After having not one but two horrible experiences with endocrinologists being rude, insensitive, uninformative and generally unhelpful, I knew I was going to have another battle on my hands. Trying to find the right doctor when you have a rare disease most endocrinologists don't even know about can be brutal. Luckily I found one, but I had to do some searching. My advice is to start your research on-line. Yahoo groups has an hyperaldosteronism group where a lot of patients exchange doctor recommendations or those to avoid. The second way, which can often the the best, is to ask anybody and everybody you know that has or had an endocrine problem if they like their doctor. If that doctor only specializes in certain diseases, i.e. diabetes and not P.A., ask that doctor if he knows another endocrinologist who would. Personal referrals are the best--it's how I get most of my business and it's also how I found 2 very good doctors of my own. My third endo came to me by way of a well-known surgeon I had done translation work for. Distraught and desperate, I called him one day for some advice and not only did he give me the name of a good endocrinologist, he also said he knew my condition well and could operate on me if that was my option. It worked out perfectly.
Research~
After you get your endo, the next step is to go back on-line and research as much as you can on what this disease is about, including treatment options. This can get a little tricky since P.H. is rare. Some sites may have descriptions that don't include all the tests you'll need to take, while others don't list the many side-effects you may be experiencing. You just have to be vigilant and keep looking. Joining two support groups educated me about medication options and helped me realize I wasn't alone with all that I was feeling. (Support Groups listed on the front page of this blog). Having someone to complain to who understands can be so helpful. Sometimes it's easier to talk to strangers who are experiencing the same things as you. The more we communicate with each other, the more we can learn.
Health Insurance Coverage~
The next thing you need to do is find our what your health insurance provides for. If you've lost your plan (we all have done this, don't worry), contact their human resources department and they will send you out a copy. If reading all the medical terminology is too hard, contact this group, http://www.patientadvocate.org/
It's their job to help you understand your options and your health plan.
Get Copies of your Test Results~
Always ask for copies of all your test results, they are yours and by law you have a right to them. This can help also with the mountains of paperwork you'll receive from the insurance company. The more information you have the better equipped you'll be if there's a billing discrepancy. If you don't like the treatment you received from your doctor (he has to be very bad mind you), don't pay the bill, contact first a patient advocacy group (if he is in a hospital, they will have one). If he's not in a hospital, contact the patient advocacy group listed above, hopefully they can help. You may also call your insurance company and explain your story. You may not have to pay or at the very least may get a discount. Remember, you would complain if your service was bad at a restaurant, why stop at food when it's your body at stake?
Talk to Your Family and Close friends~
This can be hard for many of us to do. Originally I wasn't going to tell my family for a variety of reasons, one of which being I have an ailing, elder parent that requires constant attention. But when I kept missing family events because I was so exhausted or had muscle spasms, they had to know and I'm glad I was honest. You owe to yourself and your loved ones to let them know that your electrolytes and hormones will be off-balance and things can get scary. You will miss events, you will be very tired. If you don't tell them, your disease will come out sooner or later by you either passing out, or acting aloof or in a fog. So talk to them and hopefully they will support your journey to wellness. If they don't, join those support groups I mentioned or confide in one good friend. We all need a shoulder to cry on, no one is exempt.
Treat Yourself Well~
You will have off days, this is a fact. But don't be hard on yourself, it will only make you more discouraged. Try to do nice things for yourself such as massage, manicures, spa days or a girls nite in with a movie or a martini. The better you treat yourself the more positive your attitude and the better you can fight those aldosterone blues.
Act as Normal as you Can~
Get back to your old routine as quickly as possible. This may sound weird but it helps. There was a time that I let this illness take over my life, it was hard stopping it. But I got so tired of being tired, I decided to do something about it. I started to work out again, it had been at least a month and I felt it. At first I really had to push myself, but now it's very normal. Even if I'm exhausted, I'll get on the treadmill for at least 25 minutes 3 times a week to give me some much needed endorphins. This helps with the high blood pressure part of the disease too. As well, I try and get together with friends/family when I have my good days. It may just be one day a week, but I still make the effort. Try to be positive, you will get better... the tests and results seems to take forever, but you will get there. I'm almost at surgery and I feel very hopeful finally.
What you Need to Know
After having not one but two horrible experiences with endocrinologists being rude, insensitive, uninformative and generally unhelpful, I knew I was going to have another battle on my hands. Trying to find the right doctor when you have a rare disease most endocrinologists don't even know about can be brutal. Luckily I found one, but I had to do some searching. My advice is to start your research on-line. Yahoo groups has an hyperaldosteronism group where a lot of patients exchange doctor recommendations or those to avoid. The second way, which can often the the best, is to ask anybody and everybody you know that has or had an endocrine problem if they like their doctor. If that doctor only specializes in certain diseases, i.e. diabetes and not P.A., ask that doctor if he knows another endocrinologist who would. Personal referrals are the best--it's how I get most of my business and it's also how I found 2 very good doctors of my own. My third endo came to me by way of a well-known surgeon I had done translation work for. Distraught and desperate, I called him one day for some advice and not only did he give me the name of a good endocrinologist, he also said he knew my condition well and could operate on me if that was my option. It worked out perfectly.
Research~
After you get your endo, the next step is to go back on-line and research as much as you can on what this disease is about, including treatment options. This can get a little tricky since P.H. is rare. Some sites may have descriptions that don't include all the tests you'll need to take, while others don't list the many side-effects you may be experiencing. You just have to be vigilant and keep looking. Joining two support groups educated me about medication options and helped me realize I wasn't alone with all that I was feeling. (Support Groups listed on the front page of this blog). Having someone to complain to who understands can be so helpful. Sometimes it's easier to talk to strangers who are experiencing the same things as you. The more we communicate with each other, the more we can learn.
Health Insurance Coverage~
The next thing you need to do is find our what your health insurance provides for. If you've lost your plan (we all have done this, don't worry), contact their human resources department and they will send you out a copy. If reading all the medical terminology is too hard, contact this group, http://www.patientadvocate.org/
It's their job to help you understand your options and your health plan.
Get Copies of your Test Results~
Always ask for copies of all your test results, they are yours and by law you have a right to them. This can help also with the mountains of paperwork you'll receive from the insurance company. The more information you have the better equipped you'll be if there's a billing discrepancy. If you don't like the treatment you received from your doctor (he has to be very bad mind you), don't pay the bill, contact first a patient advocacy group (if he is in a hospital, they will have one). If he's not in a hospital, contact the patient advocacy group listed above, hopefully they can help. You may also call your insurance company and explain your story. You may not have to pay or at the very least may get a discount. Remember, you would complain if your service was bad at a restaurant, why stop at food when it's your body at stake?
Talk to Your Family and Close friends~
This can be hard for many of us to do. Originally I wasn't going to tell my family for a variety of reasons, one of which being I have an ailing, elder parent that requires constant attention. But when I kept missing family events because I was so exhausted or had muscle spasms, they had to know and I'm glad I was honest. You owe to yourself and your loved ones to let them know that your electrolytes and hormones will be off-balance and things can get scary. You will miss events, you will be very tired. If you don't tell them, your disease will come out sooner or later by you either passing out, or acting aloof or in a fog. So talk to them and hopefully they will support your journey to wellness. If they don't, join those support groups I mentioned or confide in one good friend. We all need a shoulder to cry on, no one is exempt.
Treat Yourself Well~
You will have off days, this is a fact. But don't be hard on yourself, it will only make you more discouraged. Try to do nice things for yourself such as massage, manicures, spa days or a girls nite in with a movie or a martini. The better you treat yourself the more positive your attitude and the better you can fight those aldosterone blues.
Act as Normal as you Can~
Get back to your old routine as quickly as possible. This may sound weird but it helps. There was a time that I let this illness take over my life, it was hard stopping it. But I got so tired of being tired, I decided to do something about it. I started to work out again, it had been at least a month and I felt it. At first I really had to push myself, but now it's very normal. Even if I'm exhausted, I'll get on the treadmill for at least 25 minutes 3 times a week to give me some much needed endorphins. This helps with the high blood pressure part of the disease too. As well, I try and get together with friends/family when I have my good days. It may just be one day a week, but I still make the effort. Try to be positive, you will get better... the tests and results seems to take forever, but you will get there. I'm almost at surgery and I feel very hopeful finally.
The 24 Hour Urine Collection Test
This test is done to see how much aldosterone is released into your urine. It may be one of the last tests your endocrinologist gives you before making a decision on surgery, but it depends on his testing protocol. Mine was supposed to be done right before the AVS, but it got delayed due to my endo's office staff's incompetence.
The test is not, however, as icky as it sounds. But it is a bit inconvenient, especially if you are a busy person who is prone to activities outside of the home. You should try to not leave the house when you do it, or you'll have to carry your little cup with you. And then fly home to refrigerate it, or even worse-refrigerate it at work (gasp!). And you know what they say--sometimes the cuppeth runneth over. And if you have P.A., chances are it will. Often.
So yes, it's best to do this one at home. ALONE. Not much else to say on this other than I'm glad it's over.
How the test is performed
* On day 1, urinate into the toilet when you get up in the morning.
* Afterwards, collect all urine in a special container for the next 24 hours.
* On day 2, urinate into the container when you get up in the morning.
* Cap the container. Keep it in the refrigerator or a cool place during the collection period.
* Label the container with your name, the date, the time of completion, and return it as instructed.
The test is not, however, as icky as it sounds. But it is a bit inconvenient, especially if you are a busy person who is prone to activities outside of the home. You should try to not leave the house when you do it, or you'll have to carry your little cup with you. And then fly home to refrigerate it, or even worse-refrigerate it at work (gasp!). And you know what they say--sometimes the cuppeth runneth over. And if you have P.A., chances are it will. Often.
So yes, it's best to do this one at home. ALONE. Not much else to say on this other than I'm glad it's over.
How the test is performed
* On day 1, urinate into the toilet when you get up in the morning.
* Afterwards, collect all urine in a special container for the next 24 hours.
* On day 2, urinate into the container when you get up in the morning.
* Cap the container. Keep it in the refrigerator or a cool place during the collection period.
* Label the container with your name, the date, the time of completion, and return it as instructed.
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