Tuesday, December 2, 2008

Darla, pituitary bio

We moved back to Las Vegas after a 5 year absence in the midwest in early November 2006. I was pregnant at the time.

In late December 2006, the night before New Years' Eve I started feeling different. I can't really describe it other than I felt like maybe I was going to have a stroke.

I went to the ER at Mountain View hospital because we were staying with my husband's Mom in North Las Vegas at the time. The ER did an EKG and CT scan and Ultrasound. My EKG was fine. The CT scan showed "Some sort of remnant on (my) right frontal lobe". The ultrasound showed that at 4 months my baby had not been growing for a few weeks and had no movement and no heartbeat.

The ER Dr. said he was going to call in a OB/GYN surgeon to remove the baby by D&C (Dilation and Curettage) which is a medical term for abortion. He was also going to refer me for an MRI to find out what appeared on the CT scan. I was transfered to the Maternity floor.

We were shocked and devastated and surrounded by pregnant women and women who had just given birth to their live babies while ours is being referred as medical waste. I never saw the ER Dr. again and was never given a referral for that MRI. I even called them after the surgery and asked about the MRI and they refused to look into they also did not give me any contact information for the Dr. who did the surgery, I had no one to follow up with.

Mid-late January of 2007 I went to the bathroom cramping one morning but I only had to pee and when I wiped it was scratchy like an eggshell. I looked at the toilet paper to find a bloody mass of boney tissue and I freaked out. I had to wake my husband up embarrassed and show him, their was no way at that moment I could describe it, it was a horrible feeling!

I put the stuff in a baggie and John (my husband) took me to ER at St. Rose Sienna and we explained what happened. The Dr. at Mtn. View didn't do a very thorough job with the D&C procedure and I was miscarrying what was left of my chopped up baby. It still makes me cry and angers me!

So St. Rose referred me to an OB/GYN contracted with their hospital and tested the "specimen" I brought them. They confirmed it pieces of our baby as I had thought. They referred us to make an appointment with Sara Stephenson in Green Valley. At first, she refused to see me because I didn't know the Dr. who did the D&C, she didn't want to deal with someone else's patient.

St. Rose threatened her that if she didn't see me she was breaking her contract with them and so she did another D&C in late January 2007 at Boulder City Hospital. In May 2007 I tested positive with a home pregnancy test!

I kept trying to get Sara Stephenson to take me as a patient but I didn't have cash or insurance at the time (we were waiting for Medicaid approval) and she refused to see me. I didn't get to see a Dr. until October when we finally had coverage. The only Dr. that would accept me as a patient that far into the pregnancy was Rebecca Tyre in Green Valley (Great OB/GYN!).

At my second appointment I had gained too much weight, I had too much Protein in my urine and my urine was showing sugar too. This meant I likely had Diabetes, possibly only Gestational Diabetes, and was developing Toxemia (the new term for pre-eclampsia).

She referred me to a group called Desert Perinatal Associates who deal with high-risk pregnancies. After only a few appointments (every 3 days) they admitted me into Summerlin Hospital November 4th, 2007 (I think) with the diagnosis of Toxemia and Gestational Diabetes. I was on bed-rest and monitors for my baby.

No one had any idea about Cushing's Disease taking over me and the bedrest destroyed me! My body was getting larger while my muscles were getting weaker.

On December 7th, 2007 my baby was delivered via Cesarean Section by Dr. Paul Wilkes and Dr. Alan Bolnick of Desert Perinatal Associates. They were great! Johnny was premature, his due date wasn't until January 27th, 2008 but he was the healthiest preemie they had ever seen in the level III NICU, especially for being a white male (they normally have the weakest prognosis'). We were SO lucky! He did very well in Level III NICU and was moved to Level II NICU within 2 weeks, I think. He did so well there that when they ran out of space he was the only baby they felt could live through a transfer to another hospital so they could make room at Summerlin.

Johnny was transfered to Spring Valley Hospital under our consent which was better for us because it was so much closer! They let us take him home on Christmas Day 2007!

On New Years Eve (one year from the loss of our previous baby), Johnny turned blue in the face. We called 911 but John had aroused him to breathe again before the paramedics came. By the time the ambulance arrived he was fine, but it was still necessary for them to take him to the hospital (that's what they explained to us). Johnny was taken by ambulance to Sunrise Children's Hospital. By this time we felt like we've been to every hospital there is between Johnny and I.

John rode along in the ambulance and I stayed behind with the girls. He was released the next day, John and I stayed with him overnight while they kept him for observation.

Meanwhile, I was not recovering well from the Cesarean surgery. Desert Perinatal Association disagreed with me, they felt I was recovering normally. I knew something wasn't right, so I found a Primary Care Dr.

I went to UMC Primary and met Dr. Lisa Hohl in January of 2008. I told her everything I could think of that was wrong with me, every last symptom; I wanted a diagnosis so badly. She thought I was a nutcase and told me I just have anxiety and probably some depression. She prescribed me Xanax and Prozac and said to come back in two weeks for a follow up. I was devastated again.

I wasn't taken seriously. I must have sounded like a nut rambling off every symptom in the book, if I were a DR I would have thought the same, I guess. I didn't know what to do. I went back to see her in two weeks like she asked hoping for different results. I had gained 14 lbs. (like 1 lb a day!), she was shocked. "How is that possible?" she thought out loud. Me too. We both looked at each other confused, and wondering if someone messed up at the last appointment when weighing me.

Although I had told her at the last appointment that I was experiencing rapid weight gain. I again reminded her about how I never got an MRI after that interesting CT scan and was begging for an MRI referral, but Mtn. View didn't send her any records about the CT scan as requested.

She asked me if I had bad stretch marks during my pregnancy and I said "Yes, really really bad every where!" She asked me to show her and I did. She said "I am going to send you for an MRI, I don't need Mtn. View's records that bad, I think you have Cushing's Disease and that's why you're gaining weight so fast."

I had just read an article about it that same morning in a Valley Health Systems newsletter so I knew what she was talking about and I had even secretly thought the same thing, but didn't want to say it, it's such a rare disease, and I thought I was probably being a hypochondriac and only assuming that because it was the most recent thing I read.

She sent me off with more specific tests and a referral for an MRI. Imaging places won't give you an MRI without a DR's referral, that's why I couldn't get one on my own. The MRI showed that "remnant on my right frontal lobe" too. It was a tumor on my pituitary gland. It was an ACTH producing macroadenoma it was causing all my problems!

I was referred to an Endocrinologist, Dr. Serena Klugh. She referred me to UCLA. I was scheduled to meet a Neurosurgeon at UCLA on April 30, 2008. The tumor had to be removed, it's the only cure for Cushing's Disease. I had to have brain surgery. It was done through my right nostril instead of a craniotomy. It's called an endoscopic intranasal transsphenoidal surgery to remove the pituitary tumor. Cool stuff, not so cool side affects.

In March before my brain surgery, I went to St. Rose Delima ER because I had a bad stomach ache and way too much rectal bleeding. The ER DR there diagnosed me with Pancreatitis on top of Cushing's Disease. He gave me some pain killers and sent me on my way.

April 30 I went to UCLA and met with Dr. Marvin Bergsneider, a Neurosurgeon. He called 911 because I was short of breath and had an ambulance take me across the street to the UCLA ER and I was admitted to the hospital. They did ultrasounds on my legs thinking I had a blood clot, but none were found. My legs were very red and swollen and they later thought I had bilateral (something, I forgot, but it's really rare and more DRs disagree that was a correct diagnosis than do agree with it). They kept me there and prepared my body to withstand the brain surgery.

I was alone, John was working in Lake Havasu City, AZ at the time and we needed the money too bad for him to take time off to be with me. My surgery was on May 2, 2008. I was released May 9th, 2008 (I think).

I never made it to any of my follow up appointments, I don't feel like I could withstand the drive or the ride that far again. It was a miserable ride home. For months after the surgery I could barely move and everyone thought I was dying. I had no energy and tremendous memory lapses.

I've followed up with my Endocrinologist here. I've found a Ear, Nose, Throat DR here to follow up with, Dr. Stephen Seldon. I haven't seen a Neurologist here since, however DR. Bergsneider at UCLA did give me a referral for an MRI back in May, 2008 and his results and my lab-work according to the DRs looks like the tumor is all gone.

I'm on steroids to replace the hormone, but my body is suffering the affects of the disease still. I'm seeing a Cariologist now, Dr. Pero Kumar Kittusamy at Nevada Heart and Vascular Center and he's trying to get a referral to a local Neurologist for me. I've just had problem after problem since we moved back here.

My ENT (ear, nose, throat) DR said if I lived in the midwest again I'd be doing better with my breathing because of the humidity. It's so dry here (Nevada), it's hard to keep my nostrils moist and I get dry mouth really bad which will eventually rot my teeth which I have worked hard all my life to take great care of aside of smoking for a few years of my life (I quit May 14 of 2007).

I've seen a lot of DRs during the last two years, I've also been diagnosed with severe Apnea, Sinus Diseas, Diabetes Type II, Anxiety... With more to come more than likely. This disease is so cripling and my biggest hurdle is that my pain is being completely ignored and unmanaged so I suffer the affects this Cushing's Disease has played on my body every day.

I am attempting to seek pain management, but with so few DRs understanding this, they just don't help. They want to know what hurts. What doesn't hurt? Everything hurts and if something does stop hurting, there's always something else. I can get relief. When you tell a DR everything hurts they think you're joking or exaggerating, I am not!? I can't go in complaining about something different to get a pain prescription and run out and go in and complain about something else and go on for the rest of my life like that. I need something that can continue to provide relief without having to explain what hurts that minute, because it's easier to name the few things that don't hurt at that moment but probably will hurt before the conversation is over.

My normal weight before this came about me was 140-150 lbs. I was 301 lbs. before my surgery. I am almost down to about 250 lbs. almost 8 months later. I am not comfortable with my "recovery" right now.

My cortisol levels seem good and last MRI looked good, but I'm having many other serious problems now: Heart palpitations, Apnea, PAIN, vision problems (legally blind without glasses), dental problems, chemical imbalances, etc. I really could go on and on.

They can remove the tumor, they can replace the hormones, but they don't care to stop the suffering and pain. The effects aren't always reversib le. I wish DRs understood this disease better. I look at so many overweight diabetics and wonder if they have Cushing's, but they/their DRs have no clue. I bet Cushing's is more widely spread than it's given credit for.

I wish it Cortisol levels were checked during pregnancy or at least during pregnancy with diabetes or any other high risk. The Toxemia and Cushing's in combination almost killed me and my son both! I'm still not confident I've beaten it. I believe the tumor is gone, I believe the blood tests for Cortisol are improved, but

I know my body is not right, not even close. No one should be in this much pain every day!

Email Darla

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