30 Years Cushing’s Free!

 

Today is the 30th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 30 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even though I’m when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.

However, this year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died a couple months ago.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

Rally for Medical Research Hill Day

Held every September, this Capitol Hill Day event continues the momentum established in 2013, and includes nearly 300 national organizations coming together in support of the Rally for Medical Research.

The purpose of the Rally is to call on our nation’s policymakers to make funding for National Institutes of Health (NIH) a national priority and raise awareness about the importance of continued investment in medical research that leads to MORE PROGRESS, MORE HOPE and MORE LIVES SAVED.

The next Rally for Medical Research Hill Day is Sept. 22, 2016.

Sign up to receive updates, including a link to register once it becomes available.

NINDS Know Stroke Campaign – Know Stroke Home

Each year in the United States, there are more than 795,000 strokes. Stroke is the fourth leading cause of death in the country and causes more serious long-term disabilities than any other disease. Nearly three-quarters of all strokes occur in people over the age of 65 and the risk of having a stroke more than doubles each decade after the age of 55.

The National Institutes of Health through the National Institute of Neurological Disorders and Stroke (NINDS) developed the Know Stroke. Know the Signs. Act in Time. campaign to help educate the public about the symptoms of stroke and the importance of getting to the hospital quickly.

Read the entire article at NINDS Know Stroke Campaign – Know Stroke Home.

Heart Disease Risk Factors

From the National Heart, Lung, and Blood Institute (NHLBI)

Heart Attack Risk Factors address the two types of risk factors associated with heart attacks, factors that a person can control and factors they cannot. Knowing the risk factors is so important because having just one risk factor doubles a person’s chance of developing heart disease.

This video is presented by the NIH’s National Heart, Lung, and Blood Institute

 

More on CABG (Coronary Artery Bypass Grafting)

From the NIHWhat To Expect After Coronary Artery Bypass Grafting

Checkmark
What DH had

Recovery in the Hospital

CheckmarkAfter surgery, you’ll typically spend 1 or 2 days in an intensive care unit (ICU). Your health care team will check your heart rate, blood pressure, and oxygen levels regularly during this time.

CheckmarkAn intravenous (IV) line will likely be inserted into a vein in your arm. Through the IV line, you may get medicines to control blood flow and blood pressure. You also will likely have a tube in your bladder to drain urine and a tube in your chest to drain fluid.

CheckmarkYou may receive oxygen therapy (oxygen given through nasal prongs or a mask) and a temporary pacemaker while in the ICU. A pacemaker is a small device that’s placed in the chest or abdomen to help control abnormal heart rhythms.

CheckmarkYour doctor also might recommend that you wear compression stockings on your legs. These stockings are tight at the ankle and become looser as they go up the legs. This creates gentle pressure that keeps blood from pooling and clotting.

CheckmarkWhile in the ICU, you’ll also have bandages on your chest incision (cut) and on the areas where arteries or veins were removed for grafting.

After you leave the ICU, you’ll be moved to a less intensive care area of the hospital for 3–5 days before going home. (only 2!)

Recovery at Home

Your doctor will give you instructions for recovering at home (yes to all), such as:

  • How to care for your healing incisions
  • How to recognize signs of infection or other complications
  • When to call the doctor right away
  • When to make followup appointments

You’ll also learn how to deal with common side effects from surgery. Side effects often go away within 4–6 weeks after surgery, but may include:

  • Discomfort or itching from healing incisions
  • Swelling of the area where arteries or veins were removed for grafting
  • Muscle pain or tightness in the shoulders and upper back
  • Fatigue (tiredness), mood swings, or depression
  • Problems sleeping or loss of appetite
  • Constipation
  • Chest pain at the site of the chest bone incision (more frequent with traditional CABG)

Full recovery from traditional CABG may take 6–12 weeks or more. Nontraditional CABG doesn’t require as much recovery time.

Your doctor will tell you when you can become active again. It varies from person to person, but there are some typical timeframes.

Often, people can resume sexual activity and return to work after about 6 weeks. Some people may need to find less physically demanding types of work or work a reduced schedule at first.

Talk with your doctor about when you can resume activity, including sexual activity, working, and driving.

Ongoing Care

Care after surgery may include periodic checkups with doctors. During these visits, you may have tests to see how your heart is working. Tests may include an EKG (electrocardiogram), stress testingechocardiography, and a cardiac CT scan.

CABG is not a cure for coronary heart disease (CHD). After the surgery, your doctor may recommend a treatment plan that includes lifestyle changes. Following the plan can help you stay healthy and lower the risk of CHD getting worse.

Lifestyle changes might include changing your diet, quitting smoking, being physically activelosing weight or maintaining a healthy weight, and reducing stress.

For more information about lifestyle changes, go to the National Heart, Lung, and Blood Institute’s “Your Guide to Living Well With Heart Disease.”

Your doctor also may refer you to cardiac rehabilitation (rehab). Cardiac rehab is a medically supervised program that helps improve the health and well-being of people who have heart problems.

Cardiac rehab includes exercise training, education on heart healthy living, and counseling to reduce stress and help you return to an active life. Your doctor can tell you where to find a cardiac rehab program near your home.

Taking medicines as prescribed also is important after CABG. Your doctor may prescribe medicines to manage pain during recovery, lower your cholesterol and blood pressure, reduce the risk of blood clots forming, manage diabetes, or treat depression.

Two Weeks After CABG

Sounds like a fairy tale of some kind involving veggies like cabbage, lettuce and other greenery.  But it’s not.  CABG is the abbreviation for Coronary artery bypass grafting, something I had no idea about 2 weeks ago.

CABG

DH had 3 of those grafts, the mammary artery and 2 from his leg vein.

From NIH:

Coronary artery bypass grafting (CABG) is a type of surgery that improves blood flow to the heart. Surgeons use CABG to treat people who have severe coronary heart disease (CHD).

CHD is a disease in which a waxy substance called plaque (plak) builds up inside the coronary arteries. These arteries supply oxygen-rich blood to your heart.

Over time, plaque can harden or rupture (break open). Hardened plaque narrows the coronary arteries and reduces the flow of oxygen-rich blood to the heart. This can cause chest pain or discomfort called angina< (an-JI-nuh or AN-juh-nuh).

If the plaque ruptures, a blood clot can form on its surface. A large blood clot can mostly or completely block blood flow through a coronary artery. This is the most common cause of a heart attack. Over time, ruptured plaque also hardens and narrows the coronary arteries.

CABG is one treatment for CHD. During CABG, a healthy artery or vein from the body is connected, or grafted, to the blocked coronary artery. The grafted artery or vein bypasses (that is, goes around) the blocked portion of the coronary artery. This creates a new path for oxygen-rich blood to flow to the heart muscle.

Surgeons can bypass multiple coronary arteries during one surgery.

I have to say it’s amazing how quickly the body can begin to heal after such an assault.  So far, we’ve seen the surgeon’s nurse practitioner and the visiting nurse.  Both say he’s doing very well for such a short amount of time.

There’s still some pain, some coughing, and other inconveniences but it’s amazing what modern medicine can do!

Other Stuff, Part 1: Cushing’s

Based on one of the comments for my first post (The Beginning), I’m going to mention some of our past medical misadventures here, too.

This one was mine, and it was a doozy!

Seven Dwarves of Cushing's

From a recent post on one of my blogs: A Quarter of a Century

I had my one, and only, pituitary surgery on this date in 1987.  Of course, I was trying to get a diagnosis for several years before that.

I know it’s hard to get a diagnosis now – imagine how hard it was over 30 years ago – before the Internet, Facebook, Twitter, message boards, chatrooms.  No online support – no support anywhere.

Finding any information possible at the Public Library.  Days that you feel like death warmed over, heading out to the library to Xerox medical articles you don’t understand, poring over them at home, trying to find any kernel of hope for what you have.  Then trying to convince doctors when your family doesn’t even believe you.

Finally, a doctor believes you…but he’s the wrong kind of doctor so he sends you away.  Another year goes by.  The endo recommends surgery but there are only 3 possibilities anywhere.  NIH – close by and free, Montreal – they speak French – and San Francisco.

After a diagnosis, 6 weeks of inpatient testing at the NIH.

From my bio at http://www.cushings-help.com/maryos_story.htm

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

 

My whole, long journey with diagnosing and treating Cushings can be found in my bio at http://www.cushings-help.com/maryos_story.htm

Want to read more about Cushing’s?  Check out some of this info: http://www.cushiewiki.com/