Thursday, August 17, 2017

Detailed SOLU-CORTEF actovial instructions with Photos

Detailed SOLU-CORTEF actovial instructions with Photos. These are the best and most thorough that I've ever seen. 

Add this to your emergency kit. Place it on your refrigerator. Add to service dog vest.

Train loved ones to save you! I mean, if they like is, they want to keep us around, right?! 💙💛💙

Tuesday, August 15, 2017

Choosing a BLA surgeon

How do you choose a BLA surgeon? What do you need them to say that will prove to you that will get every last one of those adrenal cells out of your body when they do your BLA? I share the questions I asked my BLA surgeon three years ago.

The internet is loaded with articles about how to choose a surgeon. 

Consumer Reports gives its suggestions. 

So does Forbes.

Even Medscape posted a study in early 2017 about How do patients choose surgeons (51% based on who accepts the insurance!). Perhaps we need to be considering other things, more medically-specific issues...

When the time comes for bilateral adrenalectomy or BLA, a Cushie has to choose the right surgeon. A google search didn't turn up much other than basic information from medical universities about Cushing's and BLA as a treatment. I did find this 2016 article Adrenalectomy for Cushing’s syndrome: do’s and don’ts, but doesn't help us when interviewing a BLA surgeon. The article tells us more when BLA is the best treatment, which is not what we are seeking.

I share so much information here in my little corner of the internet because the patient experience after BLA is nearly non-existent online. When Cushies search for information, I want them to find it. So I just post the list myself. My friends in the BLA group always help me learn more about this disease, so some of the knowledge I share here is as a result of learning from them.
I asked my BLA surgeon these questions in 2013. Yes, I asked all of these! Information is my right as a patient, and no surgeon is cutting into me without a thorough, but friendly interrogation.

-- How do you reach the adrenal glands? Which operative method do you use to perform BLAs: posterior retroperitonial laparoscopic approach or anterior laparoscopic approach? What are the benefits and risks of each method?

{many doctors have been trained one way, and they like to do it that way. Let them. You don't want them practicing on you. If you prefer one method, then find a surgeon that specializes in that method.*}{I had my BLA done retroperitoneal approach. I didn't suffer from much pain post op. I could move around easily because my body didn't bend and affect those surgical incisions. I know many people who have had their adrenal glands removed from the front. They experience a reasonable amount of pain and discomfort, but they are ok. They survive. Here is one 2012 article I found about retroperitoneal BLAs}

-- How often and under what circumstances have you converted from a laparoscopic approach to an open BLA? 

-- How many BLA procedures do you perform each year?

-- Will you perform the surgery or do you have anyone else assist you? 
{I prefer you to do it. I do not give consent for a resident or fellow to participate in my surgery.}

-- Will my weight cause any surgical concern?

-- How much exploration will you do to search for ectopic adrenal tissue?

{Give permission and encourage surgeon to really explore the area. Causes for persistence or recurrence of endogenous cortisol production were incomplete removal of the adrenal glands and ectopic adrenal tissue, which could be identified in locations like the retroperitoneal fat, the gonads, or the mediastinum.}

-- How do you handle the adrenal gland once detached? Do you bag the adrenal? 

{My surgeon said he doesn't cut into the adrenals. He cuts them away from the blood vessels, bags it, removes it, and sends it to pathology. This keeps him from leaving any adrenal cells behind.}

-- How do you ensure that you remove even microscopic adrenal cells? Do you scrape the adrenal beds?

{I drilled my surgeons about rest tissue and making sure they got the fat surrounding the adrenals. How to make sure all adrenal tissue is gone, out of hiding. You want them to remove all the surrounding fat. My left adrenal slid south below the kidney! Surgeon said it was a "normal" congenital defect"--that's an oxymoron!  Your surgeon needs to explore and track it down}

-- The adrenal glands are fed by many vessels and nerves. How do you navigate around these to avoid damage to the kidneys and other structures?

{The arteries supplying the suprarenal glands are numerous and of comparatively large size; they are derived from the aorta, the inferior phrenic, and the renal. They subdivide into minute branches previous to entering the cortical part of the gland, where they break up into capillaries which end in the venous plexus of the medullary portion.}

-- How often do you see patients after BLA for rest tissue after BLA?

-- Incidence of Nelson's of patients (med lit says 20%)

-- Have you had any of your patients get sepsis? die 30 days after BLA?

-- How much hydrocortisone is administered peri-operatively?
{100 mg solu cortef via IV push. You want all of that all at once, not drip drip drip via IV over a few hours}

-- When are cortisol levels checked post op in hospital?

-- How long do patients stay in the hospital?

-- Do the nurses that care for me post-op have special training on adrenal insufficiency?

-- How often will you come visit me in the hospital? Daily?
{I want to see you every day!}

-- How will we assess the success of the surgery with lab work? 

{DHEA-S is a good measure to check since this is made in the adrenals only}

{After both adrenal glands are removed, the blood cortisol level can be measured to see if the operation was successful if the patient is not taking hydrocortisone. In this circumstance, the patient should be given dexamethasone for several days before blood work since hydrocortisone is measured in the blood test as cortisol and dexamethasone isn't.}

Sunday, August 13, 2017

Cushing's is as bad as Cancer

As Cushies, we often struggle to let others know how poorly we are doing. How can they possibly understand when they don't know with Cushing's is?!

It seems in some people's minds, it's not as bad as cancer. Only cancer is as bad as cancer. That proves to be a very myopic perspective and limited understanding of all the diseases of the world.

Take Cushing's for example. We Cushies know the devastation we suffer physically, mentally, and emotionally from excess cortisol.

Cushies, we now have a tool to help us. The general population knows about cancer and multiple sclerosis. The authors of MANAGEMENT OF ENDOCRINE DISEASE: The Burden of Cushing's disease: Clinical and Health-Related Quality of Life Aspects compares these well-known debilitating diseases to Cushing's.

As you can easily see, untreated Cushies really aren't very well.
  • Cushies experience a lower quality of life than cancer patients in these categories:
    general health, vitality, social functioning, and mental health.
  • Cushies suffer equally with cancer patients in these categories: bodily pain, emotions.
  • Cushies fair slightly better than cancer patients in this one category: physical.

Yet, where is the compassion? Where is the support? Where is the community to surround a Cushie and load them up with freezer meals and casseroles?

I don't take anything away from cancer patients. It is indeed terrible and life-threatening. However, they don't have the monopoly on suffering, and we Cushies wish people would stop trying to make us feel better by saying we don't have it as bad as they do.

The plain fact is that we Cushies often don't have a support community other than the ones we build to support each other online. "Cushies doing it for ourselves" is a great slogan, but we need the support of our loved ones, both family, friends, and coworkers. This makes the pursuit of Cushing's Awareness all the more important.

Wednesday, August 2, 2017

Growth hormone for $0 a month!!

I found out recently that Humatrope does not charge a copay for people who don't have the money for it!! I now pay $0 per month!! I used to pay $60 per month and I have paid as little as $50 for three month supply.

How did I find this out? Well, I complained to the specialty pharmacy that filled the growth hormone that because they require me to fill it every month and refuse to fill a 90 day rx, it costs me more... instead of paying $60 a month for two months $120 and get third month free, this would force me to pay $180 for three months. This was unfair, and she said there was a plan. Not income based. Asked if I take it every day... yes. Do I have trouble meeting the financial obligations for taking the GH? Yes... i have 20 other medications I take daily. She said, ok your copay from now on is zero. WHAT?! I asked how that can happen, why would humatrope company offer to do that? She said that the insurance company still pays them monthly so the Patients amount is very small in comparison to the big chunk they get from insurance. So in order to get money from insurance, they let the patient have it for free....

The questions are:

Are you over 18?

Do you live in the USA or Puerro Rico?

Do any of your reimbursements for growth hormone medicine come from government entities like Medicare, Medicaid, Tricare, etc? THIS MUST BE NO

I'm so happy I stumbled across this, and I want to share it with all the Cushies out there who suffer from growth hormone deficiency after pituitary tumor(s) and pituitary surgeries.