What Is Hyperemesis Gravidarum? HG is a debilitating and potentially life-threatening pregnancy disease marked by rapid weight loss, malnutrition, and dehydration due to unrelenting nausea and/or vomiting with potential adverse consequences for the newborn(s). information taken from the HER Foundation website at
http://helpher.org/
To whom it may concern: May 2, 2008
In the beginning of my pregnancy, I was referred to Loma Linda but the insurance denied that and would only let me see doctors they approved. So we went on a downward spiral due to denial of medications, and an early discharge from Barstow Community Hospital (BCH). It was obvious I was ill due to the weight loss and extreme dehydration. Which ended up causing me at 10 weeks pregnant to have a special, risky IV (PICC) line placed; that goes up to the heart because my veins were too constricted and I needed fluids daily for at least a month or so. Due to Heritage calling and instructing BCH to release me they had to release me even though BCH – told me that I was too sick to go home. I asked them to please talk to the insurance. I pleaded with them and they just said, “Sweetie that is just how insurances are come back through the ER and maybe we will be able to re-admit you!” I told them please don’t do this; I am not well enough and they just said, “It is not up to us it was up to the insurance and they then said you have to go.” I told them the insurance can’t see me but you can. They said, “We did all we could.” Where was I supposed to go? I was discharged only because the insurance said I had to leave.
When I talked with Lori Brown at Heritage earlier that day 2-26-07, she said a home care agency was set up. BCH gave me a form with the number for the home care pharmacy. I called the pharmacy that same day, as I knew I would not survive long at home. The lady at the pharmacy told me that the insurance did contact them, but my care was not yet approved. I could not believe it! Heritage told me directly that this was ready, but it was a lie. My life and my unborn child’s life were not being taken seriously. Consequently, my husband had to drive me each night to BCH for hydration and other treatment I could have been getting at home for less cost and with much less stress.
On 2-27-07, I was readmitted to BCH not even 24 hours later; I called Heritage again from the hospital, and told them that I was not leaving until it was indeed ready. Lori again assured me that it was, but when I called the pharmacy again, the same lady said, “No they have not set it up through them.” I informed her that they had discharged me and that I needed home care immediately. She said, "If they discharge you right now it will be an unsafe discharge." She also instructed me not to leave. So, I told Heritage that I was not leaving until the pharmacy confirmed my home care was indeed set up. I was tired of them lying to me and could not believe they would do that again. This was the 2nd time.
The hospital nurse then came and apologetically said they needed my room and she started taking my IV pole and other items to use for other patients. She said that Heritage was refusing to pay for further services at BCH. I was alone and too sick to drive, so I refused until my husband arrived. But they insisted that I leave then and offered a bus or cab for transportation. I was terrified that I would die if I left. I was losing as much as three to four pounds a day due to my inability to drink and eat. If I left, I knew I would not make it for more than a day and did not know if I would be readmitted or refused care.
BCH staff ignored my refusal to leave and assured me that Heritage had my home care in place. Despite giving them the number, they would not call the home care pharmacy to verify. Finally, my husband arrived and informed the hospital that there was no way we were leaving until proper care was ready for me at home. He knew how sick I was and was scared of losing me and our baby if we had to go through this again.
That evening, home care services were confirmed and we were discharged. My husband was not going to allow them to send me home to die. However, Heritage would only authorize one visit per week and after all of the headache that we went through to setup the VNA care; Heritage would try to get the homecare nurse to say that I did not need their services each week that she would come. So, they were now doing the same thing they did to hospital staff and hoping to get by without paying for my home healthcare as well. Only authorizing one visit at a time caused me and my baby to have inadequate care. So, again the VNA nurses did not even advocate for my baby and I.
When I got my pharmacy order, I found out the IV fluids were not approved. Heritage would only allow oral medications, not IV, which is more expensive. I couldn’t keep a sip of water down, much less pills and water! They knew of my condition and that I required IV nutrition to survive. How could they refuse IV medications that were so critical? Knowing I could not keep them down, I did not fill them so as to not waste money. The doctor then decided that I must not need them if I would not fill the Rx. He did not understand HG and I knew I had to get to a high-risk doctor at Loma Linda. After approximately 15 DAYS, the IV meds and TPN were approved, during which time the vomiting and dehydration worsened and exceeded the amount of fluid I was being given. Things were getting worse. This is when I was admitted to St. Mary’s Hospital and when the PICC line was placed 3-10-07.
In hindsight, I should have had IV meds in the beginning. However, they had me try the dissolvable kind first, which was better than nothing, BUT they would only allow me eight pills at a time. Until I was about to be hospitalized, they would not authorize more. This meant I had to go days without my meds because of the authorization process and the pharmacy couldn’t order the medication until they had prior insurance authorization. They did not usually stock the meds that my condition required.
The next approval was for the generic version of oral dissolvable Zofran (ondansetron)। These didn't dissolve, tasted different, and caused a rash all over my body. The pharmacist informed us that our insurance had called and asked him to check around for a cheaper medication. So, I again went without medication while waiting for the insurance to straighten this out. It took approximately another 5 days; during this time I again was without medication.
As expected, I ended up getting worse and was hospitalized again – This time at St. Mary’s. Only this time, my body was so dehydrated that I required a PICC line for administering TPN (IV nutrition). They also found I had an infection caused by BCH leaving my IV’s in for too long of a period of time and St. Mary’s had to treat me for that also. Heritage tried to prevent the care that I received but Dr. Salwan told them that this is what I was going to require and that I would be receiving the care that I needed. My labs showed my blood sugar was over 800, and no one was even treating my diabetes even though I informed them of it. I was told by my doctor that I would be seeing Dr. Brar for my diabetes care as soon as the insurance authorized it. Well, I can tell you that I never got to see Dr. Brar during my pregnancy so I guess the insurance never authorized it even though my blood sugar reached 1422. I could have died just from that, especially on top of everything else!!!!
The anesthetist that placed the PICC line told me that I had to advocate for myself and that I needed to know exactly how to care for the PICC line. Meticulous care prevents infection and bleeding. She emphasized that due to my blood clotting disorder, it was very important to request bio patches each week from the pharmacy for dressing changes. I followed her instructions, but my husband had to once again fight with Heritage for this. He even asked about their cost and said, “My wife needs these and she is going to get them; even if I have to pay for them myself.” The home nurse disagreed about their need, told us we were being picky and said gauze would do. I told her that I was doing just as I was instructed by the hospital. Ironically, the anesthetist said this was going to happen, that no one would care about the outcome, and I would have to advocate for myself.
I ended up with another infection and again the IV medication was denied, this time they just said that their doctor that was their in the Heritage office who had never even laid eyes on me said, “I didn’t need it!” I said, “What? I have a kidney and urinary tract infection I need antibiotics to get rid of this. Lori Brown, said, “I can only tell you what is approved and what is disapproved.” She said, “You can always file a complaint.” So, I went about 3 days without my antibiotics. Thankfully, the pharmacist resubmitted the request, and finally sent the antibiotics he knew I needed, before the authorization came through. That took 5 days before he had approval. Dr. Wan couldn’t believe that they would not even authorize my antibiotics. THAT SAME WEEKEND, THE DOCTOR ORDERED IV PROTONIX DUE TO THE SEVERE REFLUX I WAS ENDURING. They offered oral tablets, not IV. I was so sick and having to fight to get simple meds that I required. It was only complicated because they did not want to pay for them. IT TOOK 4 VERY LONG AND PAINFUL DAYS TO GET THE PROTONIX APPROVED AND DELIVERED. The constant vomiting without it put me at high risk for tears in my esophagus, which would cause bleeding. Trying to manage that complication with a blood clotting disorder may have been deadly. So how many times have I come close to dying or put in a position where I might, just to save money? So far, it is about 6.
Eventually, I was approved for care at Loma Linda. I was told by the insurance that the remainder of my care was going to be followed closely by Loma Linda, but the ADMIT NURSE informed me that I only had one consultation authorized. I couldn’t believe it. Since I WAS THERE FOR MY FIRST VISIT, IT WAS THE ONLY TIME THEY HAD ATHURIZED TO COVER. What was the point!!! So, I had to sit in the waiting room trying to call Anna from Pacific Care. She answered the phone right away and I told her that Heritage had not set my visits for the remainder of my care as we had discussed. I told her that she told me and my husband that Loma Linda would be set up for the remainder of my pregnancy. Thankfully, she said don’t worry and she made the calls to get it authorized. The fax arrived with the approval that day, so I was able to go to my appointment. This made the situation much more stressful, as the drive had already exhausted me and my friend needed to go back to work. This ordeal was a nightmare.
I was so excited that I was finally going to have the care that I needed!!! At my appointment, the OB realized how bad I was. I was maxed out on medications, and still very ill. I could not even swallow my own saliva. They tried several different treatments and set me up for and ultrasound with the plan of doing an amniocentesis. However, during the ultrasound on June 6th, 2007 they had come to the conclusion that my baby was perfectly healthy there was no reason to do the amino test.
During that same visit, my doctor prescribed Aloxi. Because he said that my baby was fine however, that they were concerned about me since my output of fluids was more than my input. There were few meds left for me to try, so I was excited to hear he may have something to give me relief. The nurse called my order into the pharmacy IMMEDIATELY. However, on June 8th, 2007, Dr. Wan the pharmacist called again and said that the insurance had denied my medication that I would not be receiving the Aloxi with my next pharmacy delivery. I started to cry I couldn’t believe this. It was too late in the day, so I had to wait to call until Monday to deal with this. Consequently, I had to wait the whole weekend for this potent medication, even though my doctor said I needed this NOW! My heart sunk. Every time a treatment was denied, there was a delay; with each delay, a worsening of my symptoms.
June 9th, 2007 Dr. Oshiro called me at home to see how I was doing. He wanted to know how the Aloxi was working for me. I had to have been pretty bad for my doctor to be calling and checking on me on a Saturday! I told him the insurance denied the Aloxi. He couldn’t believe it. He said, “I am off on Monday; have me paged and I will get you this medication. He said, “You need this!”
June 10th, 2007, I was not feeling well and I knew something was wrong. I didn’t want to scare my husband and just told him that I needed to go get checked out. However, I knew my baby had stopped moving, as I was very connected with her. An ultrasound was started immediately. The moment the probe was placed on my stomach my life stopped. My heart stopped beating when I saw that my baby’s heart no longer was beating with mine. I screamed so loud people throughout the hospital heard my cries. For hours and hours, I grieved and made funeral arrangements. Losing my baby Ayden at 23 weeks was devastating.
Since that day I have never been the same. I did my best to get proper care and no one would listen to me. I tried to protect her and she died inside of me. How do you think I feel knowing I couldn’t help her? To make things worse the insurance denied me an appointment to go have Ayden’s autopsy report read to me so instead Dr. Oshiro had to call and tell me what the report said and meant over the phone. So, when I am told that they only denied one thing, I will tell you all “BULLSHIT!” You will never know the hell that my husband and I went through. You will never know what it is like to leave the hospital without your baby going to plan a funeral that should have never been.
I should have brought my baby home but that will never happen because she died and now I relive this nightmare over and over again every day। Whoever reads this hear my words. Many things were denied, I don’t care who denies that this happened. It happened and if someone doesn’t do something to make this right the media is going to hear about this. I am going through the same crap now doing my best to setup proper care before we get pregnant again and look at how difficult it is! Just imagine what it was like going through this while I was pregnant and dying. That is why I am doing this now and not waiting. I would be stupid to wait.
The insurance waited and waited and did not care about getting my baby and me proper treatment. We went too long waiting and each time they did this I ended up worse. Ultimately, they paid more, and we did as well, for the care they tried to deny me over and over. If they would have just treated me in the beginning it never would have been this bad. When I had better care my children lived. I never experienced this when I was on Medi-Cal! This is sad; we pay for our insurance and we are treated as if we don’t even matter. I know that my daughter and I did not matter to these people. Even today I am fighting to get proper care after my baby died through this whole mess. Does anyone care that this is hard on my family and this is not helping me through my grieving process having to keep going back through the pain of what happened to us.
I am in contact with Michael Moore and I am not joking. I am totally serious when I say this. My friends have been on Dr. Phil, NBC, and CNN regarding this illness and the poor care that women with this illness receive so if I have too I will contact them and let them know what we went through during my last pregnancy and what we are going through to get proper care and treatment during our future pregnancy.
So, with my gallbladder, kidney’s, bladder, diabetes, blood clotting disorder, Hyperemesis Gravidurium, elevated liver functions, and not being able to swallow I was denied more than just the one thing that they wrote down in their paperwork. Of course when asked for everything in my file they refused to give it to me and then when I called and asked Dr. Wan for my file he said that he could not release it to me because Heritage already told him he couldn’t that it belonged to them. He told me that I would have to get the files from them and they still have not given them to me and today it has been 325 days since my Ayden Rae Pack Died!!!!!! So, you tell me what you would do if you were treated this way, not given all of your medical records and your medical insurance killed your baby by refusing treatment; and call my bluff and see how many names get dropped in our lawsuit and in the media while we stand up for the rights of all HG Mother’s and their families. .
Sincerely yours,
Ayden Rae’s Broken Hearted Mother
Ayden Rae Pack
Friday, June 22, 2007
Baby Ayden Rae Pack died June 12, 2007, in Loma Linda. She is survived by her parents, Vanessa and Perry Pack; sisters, Linda Pack, Naida Pack, Destiny Gilmore, Patsie Pack, Sabrina Pack, and Sophia Pack; brothers, Orion Gilmore and Perry Pack; grandparents, Anita Valencia, Naydean Laney, Shirley Arnhart, Gary Arnhart and Clifford Arnhart; aunts and uncles, Tabitha Baker, Marie Walker, Joan Odeen, Deborah Collins, Karen Case, Michael Valencia, Alfred Gregory, Roger Gregory, Joe Pack, Clifford Arnhart, John Odeen, Steve Odeen, Mike Odeen, Robert Collins, Joshua Arnhart and Frankie Arnhart. A memorial service will be held Sunday, June 24, 2007, at 2 p.m. at Mead Mortuary, 36930 Irwin Road.
Many of my friends call me crazy! They say I should be happy to have my Son and Daughter and that I should stop trying to have another baby. So, I go through my pregnancy's alone telling only a few close friends. I can't tell anyone else just in case I lose the baby; I know how they must feel when we bump into one another at Wal-Mart and they say, "How is the pregnancy going? You look great!" As the look emptiness is left upon my face and I have to reply, "The baby went to be with God!" It is at that moment that I have often wondered why I want so much to have another baby after the Hell that my family and I have been through during my pregnancies; Now 10 of them because of Hyperemesis Gravidarum.
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