cataplexygirl's Blog

Dangerous Huge Hepatic Adenoma

Rare, serious, and/or chronic conditions seem to find me. I am a permanently disabled young lady On SSI disability and Texas SSI Star Medicaid who’s 'normal' was severe Narcolepsy with Cataplexy, RA, and Fibromyalgia. In April 2010, I began having severe upper right hand abdominal pain and went to the ER. That hospital did a CAT scan and the PA told me everything checked out, that nothing which could cause such pain was found... just a few small gallstones, and most likely was just my endometriosis. The pain continued, and I began to become very nauseated, unable to eat much at all, and throw up several times a week. The pain and pressure kept exponentially worsening. I went to my NP, Debra Howerton, who is my PCP, and she ordered a Sonogram, which showed I had a large growth on my liver, but they were unable to tell what it was. So she ordered an MRI, which showed a very large hepatic tumor, but still could not be discerned between Hepatic Adenoma or Carcinoma, both life threatening and dangerous.

 

At that time, things came to a screeching halt, as with managed Medicaid, all the specialists in my book either could not or would not see me at all or not until September or November 2010. The pain continued to worsen, as well as the nausea, abdominal swelling, etc. I was just waiting for the tumor to rupture, to die. Due to my history with Birth Control pills, I realized through my own research, it was most likely the hepatic adenoma, and I was just begging for any GI specialist to help me to absolutely no avail.

 

I went back to Plano Presbyterian ER, and they refused to admit me unless the very large adenoma was actively rupturing, never mind then it would be too late to save my life most likely. My parents begged for them to find a doctor somewhere who would see me as a Medicaid patient, and Thankfully, I was able to see Dr. David Park the next week. He apologized that the system had let me down, and all the suffering I had been in since April. You see, he ordered the original CAT scan from April 2010, and on the scan's Radiology Report, it went on for a paragraph and a half about a 9cm Hepatic Adenoma in the center of my liver... a gross deception and failed disclosure to me by Plano Presbyterian Hospital Staff and Discharge Papers. It would have been nice to know something was seriously wrong in April, but they seem to not want to treat County indigent and Medicaid patients, but they should have disclosed the condition to me at least.

 

Dr. Park was wonderful in that he referred me to Dr. D.R. Jeyarajah, a Heptobiliary Surgeon at Dallas Methodist Hospital. Dr. Jeyarajah accepted me as a Medicaid client, and he saved my life. I had a portal vein Embolization on Aug. 11, 20010 which did not go as planned, causing the adenoma to hemorrhage and subsequent severe pain and breathing complications. I remained in the hospital and had a left liver resection on Aug. 19, 2009. The cantaloupe-sized (on the day of removal) Hepatic Adenoma was right in the center of my liver, right intertwined and around the Portal Veins. I still have two smaller Hepatic Adenomas on the right side of my liver which must be watched closely a few times a year, but I am so glad I will see my 30th birthday!

 

I want to educate women that even though the chance of getting a Hepatic Adenoma caused by a history of taking oral contraceptives, the risk is serious and real, and had I known this would happen, I would have just dealt with the Endometriosis. I had been off oral contraceptives for more than a year when I began having symptoms of the Hepatic Adenoma.  I would love to share my story, and gratitude for Doctors who go Above and beyond the Hippocratic Oath like my surgeon, Dr. Jeyarajah, and my Sleep Specialist, Dr. Phillip Becker... because sometimes, when you choose to do nothing to help a patient(see them due to insurance type, etc.), you can cause harm, even death. There is NO reason for a 29yr old woman to die due to something serious which can be remedied or treated in the modern medical age. No life is worth more than another. All life is worth saving.

 

Post Comments

Add Your Comment!

Log in to leave a comment or Create an account

melissaw72

Thank  you for sharing this.  I don't have anything near what you did, but I can relate to the birth control ortho evra patches and problems with those (although not oral, were a patch).  Long story short, when on them I got my period twice a month, and in the meantime developed about a 13 cm cyst in my right ovary.  Had to be removed.  The OBGYN thought  maybe it had to do with the patch and getting my period twice a month.  She told me to go off it immediately.  So I had the right ovary and cyst removed, and for the first time in my life I have normal periods (I am 38 years old).  My point being the contraceptives (although not oral) posed a problem also.  Anyone on them IMO should keep an eye out for any problems.

Melissa.

cataplexygirl

Thanks Melissa. Yes, I am convinced the hormones caused your painful problems as well. You are correct, the contraceptives, the synthetic and natural estrogens in any form, even soy and flax seeds can cause and aggrivate such growths and abnormalities as you and I and many other women have. The pill, patch, the ring, the shot, the hormoned IUD, Mirena, the ring, and hormone replacement pills all can cause these problems, and I wish you and I had both been adoquately forwarned so we would have had the opportunity to prevent our suffering and pain. Thanks for your comment, and I hope for best days ahead for us both!

Elizabeth36

It is very frustrating when you have serious health conditions and doctors refuse to help.  I also have several rediculous health issues including IBS, endometriosis, gastroparesis, arthritis, etc. but I have had them for years and I know when something new is wrong.  I kept going to my doctor telling him there was something reallly wrong in my abdomen and he told me I was fine, repeatedly.  Even after a cat scan and CT, he said I was just fine.  I couldnt stop vomiting one weekend and was admitted to the hospital.  they also did a Cat scan and CT. I had something on my liver to "Follow up with my GP."  Turns out I have 9 tumors of four diffferent types, in my liver.  the largest is an 8.5cm adenoma in the center toward the left lobe.  I have 6 more days until my resection at barnes jewish hospital in St. Louis.  What can I expect when I wake up?

» All comments
» Comments RSS