Help us Help Aimee Rude Fight Cancer!

Hi, my name is Leigh Melander, and Aimee's mom Patty Brundage is one of my favorite people in the world. I met Aimee when I was in grad school with Patty; she was a vibrant, sparkling, talented artist, filled with generosity and bubbling with creative ideas to bring her art out into the world.

In 2007, all of those plans came to a screeching halt. Aimee's digestive system mysteriously shut down, and since then, Aimee and Patty have been in the most difficult fight to keep her alive that I've ever seen. They've battled a catastrophic progressive disease, a dysfunctional health care system, fear, pain, and financial stress. And for fifteen years, they've fought to make joy and hope when their lives turned sideways.

And then, this spring, Aimee was diagnosed with breast cancer. Aimee immediately began chemotherapy, and the stress of the treatment shut down her body. She has been hit with severe neuropathy and cognitive problems and needs help beyond what Patty can provide at home. Aimee's medical team has decided to stop the chemo so she can regain her strength. They hope that once she's stabilized, they will be able to continue treatment to beat her cancer.

For the first time, Patty has asked us for help.

The family is exhausted and reeling from managing Aimee's illness and needs our support. Their medical bills are already astronomical (over $2500 per month out of pocket), and now Aimee needs to be in a rehab hospital to become strong enough to fight the cancer.

A group of Patty's pals from grad school has gathered to help give them a hand, and we're hoping to get your support.

Won't you help us help Aimee? Any dollar amount will be gratefully appreciated. Thank you!!!!! #aimeetough

AIMEE'S MEDICAL HISTORY AND CURRENT SITUATION

From Patty, Aimee's mom

Aimee is a 37-year-old Type I diabetic who developed the disease at four years old. In 2007, she began having episodes of intense abdominal pain accompanied by continuous, intractable vomiting, which led to numerous hospitalizations. At that time, her primary care physician diagnosed her with gastroparesis and prescribed Reglan. This treatment had no effect on the occurrence or duration of the pain and vomiting episodes, so he referred her to Dr. Edy Soffer at Cedars-Sinai. Dr. Soffer recommended an Enterra gastric stimulator, and the device was implanted in June 2009. This device made no appreciable difference either; by September, she spent more time in the local hospitals than out. We became very frustrated with the lack of patient follow-up and the difficulty of trying to reach Dr. Soffer. His response in all situations was to adjust the stimulator; he neither ran further tests nor considered a coexisting medical condition. A friend of ours, Dr. Jeff Reinking, referred Aimee first to Dr. Jeffrey Aron and then Dr. William Snape at California Pacific Medical Center in San Francisco. Dr. Snape prescribed Lyrica and Ativan for her symptoms. She continued to require hospitalizations for her attacks of vomiting and severe epigastric pain. In December 2009, Dr. Snape discovered that her pylorus valve did not permit food to leave the stomach. Aimee had a pyloroplasty on Jan. 5, 2010, at CPMC, and we all thought she would be on the way to recovery.

But in early February, 2010, she had another episode of intense abdominal pain and vomiting that led to another hospital stay, including time in the ICU. In early March, she had another such attack. This time her bilirubin count tested high, and she had sludge in her gall bladder, so her gall bladder was removed. Her surgeon also installed a port-a-cath to facilitate further medical treatment. She had another episode after that—the same intense pain and non-stop vomiting. On April 5, Aimee returned to CPMC, where Dr. Snape’s PA, Shelly Gray, adjusted her stimulator and increased the amount of Lyrica she takes. On April 17, Aimee had another identical episode of excruciating pain and intractable vomiting, leading to a four-day hospitalization. She then had four more ER trips for the same pain and vomiting and another four-day hospital stay. At home, on the unofficial advice of numerous physicians, we replaced Reglan with Motilium.

However, on May 5, 2010, she began another episode. I made a cold call to UCLA's GI center, and Aimee saw Dr. Emeran Mayer on May 12, 2010. He diagnosed the underlying problem as Cyclical Vomiting Syndrome and prescribed Amitriptyline, a tricyclic antidepressant, and Cyproheptadine. Dr. Mayer also told her to take OTC Benadryl or Dramamine if she felt nauseous. Aimee had three symptom-free months, except at the beginning of her menses. She would vomit and have pain then, but she was able to fight off an episode. The CVS literature lists menses as an episode trigger, so in mid-September 2010, she began taking oral contraceptives in an effort to eliminate that trigger. Her Oct., Nov., and Dec. hospital admissions all coincided with breakthrough bleeding from her body despite the oral contraceptives. None of her GI doctors have suggested anything about this correlation except to suggest she see a gynecologist.

On August 20, 2010, the three primary triggers for CVS hit Aimee all at once. She had a bladder infection and started menstruating on a brutally hot day. This put her back in the ER and the ICU because her blood glucose also zoomed up at an alarming rate. We consulted with Dr. Mayer, who added Clonazapem to her medications and said to discontinue the Lyrica and Ativan. After that, she was in a state of almost continuous pain and vomiting episodes. She went to UCLA and consulted with Dr. Mayer on Sept. 22, 2010. He increased the Clonazapem dose slightly and gave her dissolvable Clonazapem lozenges to take at the first sign of an episode. Increasing the dosage and having the dissolvable tablets did not help; even though she downed the pills like candy, she had to return to the hospital on October 1 for a six-day stay. She also tried a Fentanyl patch which helped some, but not enough. The only meds that help at all to break the pain/vomiting cycle are Benadryl in her port plus 4 mg doses of Dilaudid every three hours.

She was released from the hospital on October 7 and began taking Zonisamide as prescribed by Dr. Mayer, but had to return to the ER on October 11 with the same pain and nausea. This hospital stay was a disaster in many ways, primarily because the nurses did not give her the prescribed doses of Lantus for six days despite Aimee's medication list and doctor's orders. She was released on Oct. 17, although very unstable, and, despite resuming her regular diabetic medication routine at home, she had to return to the ER at a different hospital the following morning. Her blood sugar was over 700, her heart rate over 150, and she had an infection of undiscovered origin and was severely anemic. She spent two days in the ICU, and had to have a blood transfusion, ongoing iron treatments, and heart medications. She also had an endoscopy in October, which showed an enlarged stomach, a symptom of gastroparesis. On Oct. 28, while in the hospital, she had an episode of pain and vomiting begin. She vomited enough to become dehydrated, and her blood sugar and heart rate consequently soared. She was released from the hospital on November 3 and felt tired but all right until November 6, when she began vomiting again. In desperation, she put on two 25mcg/hr Fentanyl patches which eliminated the pain and vomiting. She was then able to take her regular medications, rehydrate herself, and bring her blood glucose levels under control. But on Nov. 11, she had to be admitted to the hospital for another extended stay which included two days in the ICU on an insulin drip and another blood transfusion because her hemoglobin count was so low.

She also changed GI doctors in November. The new doctor, Robin Matuk, performed an EUS on Nov. 29, 2010, and discovered that Aimee has a scarred and atrophied pancreas. He diagnosed chronic pancreatitis, prescribed digestive enzymes, and suggested that she see a pain specialist. On Dec. 2, Dr. Parmar prescribed Fentanyl patches and Dilaudid tablets as needed for pain, and Phenergan tablets for nausea control. But on Dec. 15, Aimee experienced another episode of intractable vomiting and pain. When she arrived in the ER, she was DKA, had a blood pressure of 77/45 and a heart rate over 15O. She also felt very weak and short of breath. She was admitted to the ICU for an insulin drip and moved to a regular room two days later. She had to have a blood transfusion on Dec. 21 for low hemoglobin and was then sent home. She stayed out of the hospital from Dec. 21 until Feb. 4 by taking Phenergan and the dissolvable Clonazapem at least once daily to treat nausea. She spent a lot of her life asleep as a consequence. She only felt able to live somewhat normally for a few brief hours a day. She lived on Instant Breakfast and small meals of soft foods, at most two small meals in a 24 hour period. Aimee spent ten days at the Arizona Mayo Clinic from Jan. 17-27, 2011. This evaluation trip was a huge disappointment. Their testing confirmed gastroparesis, but other than suggesting that she eat soft foods, which she already did, the Mayo Clinic offered nothing in the way of advice, treatment, medication suggestions, or where to seek further help, nothing.

On Feb. 4, 2011, she had another intense pain and vomiting episode leading to DKA and two days in the ICU plus four days in a regular room. She had to have an IV iron treatment and another blood transfusion. On Feb. 15, she was treated for pain and nausea in the ER and sent home. She had to go back to the ER on Feb. 16 for intractable pain and vomiting, and because she had to wait for seven hours to be seen by the ER doctor, she was in DKA and had to have an insulin drip and another five-day hospital stay. She tested her blood glucose before she left for the ER, and it was 100. By the time she vomited for seven hours and was finally seen by the doctor, her blood glucose level was over 400.

From March through May 2011, Aimee spent more time in San Joaquin Hospital than she did out of it. She also saw Dr. Antonia Chalmers, who now treats her for migraine. On May 20, 2011, Dr. Robin Matuk had her transported via ambulance to Cedars-Sinai Hospital in Los Angeles to undergo an ERCP with Dr. Simon Lo. As a result of that test, Dr. Lo performed a pancreatic duct and biliary duct sphincterotomy and pancreatic stenting. Since this procedure, Aimee had to make a trip to the ER at San Joaquin Hospital on June 4, 2011, and an ER trip on July 22 which led to a three-day hospital stay. She continued to be plagued with almost constant nausea since the procedure despite the combined efforts of Dr. Matuk, the gastroenterologist, Dr. Parmar, the pain specialist, Antonia Chalmers, the neurologist, and her family doctor, Keith Seidenstricker.

After spending most of 2011 in the hospital, Aimee has transported by ambulance from San Joaquin Hospital in Bakersfield back to CPMC and Dr. William Snape in San Francisco because the GI doctors here did not know how to control her attacks of pain and vomiting. Dr. Snape turned off her Enterra gastric stimulator and changed her medications yet again. These changes did not help, and Aimee had to return to the local hospital within a week. At this time, Dr. Antonia Chalmers prescribed Topomax to treat Aimee’s migraine disorder, which also triggers gastroparesis attacks.

 At this point, Dr. Keith Seidenstricker, our family physician, recommended that Aimee self-administer the medications given to her in the hospital that can actually ease the pain and nausea-- IV Benadryl through her port-a-cath and Hydromorphone 8 mg tablets. This combination of medications remains the only treatment that has kept her out of the hospital for any length of time. Her chronic condition causes excruciating epigastric pain, so she needs both medications to stay out of the hospital. I have included her medication list for your perusal. Aimee sees Dr. Seidenstricker once a month and has lab tests every three months to monitor her diabetes, organ health, and overall condition. She also has her port access needle changed weekly at the AIS Cancer Center.

In October, 2013, Aimee finally was awarded official permanently disabled status. She was denied two appeals; for the third appeal we used an attorney through Health Advocates and attended a hearing. She obviously cannot work with her health conditions, so the judge ruled her permanently disabled. Her condition has worsened in the past three years, which should not be surprising: gastroparesis is incurable and progressive. The nerve damage to her gastrointestinal tract is incurable and progressive. She has already tried all of the treatments available for this condition and seen all of the experts in this field in the western United States. Her medications keep her out of the hospital; they do not and will not cure her condition. Nothing will. She is not going to get better. She lives on small sips of Ensure, smoothies, and other pureed foods. Even those tiny amounts of food in her stomach cause debilitating pain and nausea. Without the Hydromorphone 8 mg tablets and IV Benadryl, she is in terrible pain with intractable vomiting that lands her in the hospital. Vomiting leads to dehydration. In diabetics, dehydration prevents the body from utilizing insulin and DKA results. DKA is a life-threatening condition.

Since 2013, two other severe health conditions have arisen. One was a mental health issue; hearing voices, paranoid delusions, and extreme anxiety. Aimee now sees a psychiatrist regularly, and the prescribed Olanzapine controls her mental health issues. Thank God. She has not fared as well with the other severe health issue. Aimee developed gangrene in her right foot, which necessitated two surgeries to scrape the foot bones and remove all of the infected tissue. She then entered a long convalescence, receiving IV antibiotics twice a day for months, weekly blood tests administered by the home health nurse, and a wound vacuum attached to her foot, also for months. The surgery area has healed well, but other infected sores keep appearing on her heels, even though she is not bed-ridden. For the past two years, she has seen the podiatrist every week. He scrapes the wounds, applies collagen, or skin grafts and prescribes oral antibiotics. The wounds diminish, and then another one appears on the same or the opposite foot. Added to the feet issue is she has also developed badly swollen legs. She has had several procedures to lessen this condition from reputable vascular specialists and has one scheduled for this coming Wednesday. Needless to say, these conditions contribute to her pain and inability to work.

Aimee’s life consists of at least four blood glucose checks per day. Severe gastroparesis makes diabetes harder to control because she never knows when nutrients will leave her stomach and become available to the rest of her system. She is only able to ingest liquid or, at most, soft foods, like yogurt or pudding or smoothies. She must continue to self-administer liquid Benadryl via her port-a-cath and take the Dilaudid tablets; otherwise, she will wind up in the hospital in horrible pain with intractable vomiting. If she continues this medication pattern and only ingests liquid and soft foods, she can eke out a few good hours each day. Too often, those good hours included medical appointments, on average, three per week. If it sounds like her health and life hang on a thread—they do. Any change to her treatment plan would have catastrophic consequences for her. We cannot allow that to happen.

On February 24. 2022 Aimee was diagnosed with stage three aggressive breast cancer. She began chemotherapy almost immediately at the AIS Cancer Center in Bakersfield. Aimee became increasingly debilitated by the chemotherapy treatments. By June 20, she was delusional, non-lucid, unable to walk and falling even though she used a walker. She has lost fine motor control in her hands and thus cannot perform daily living tasks such as self-care, dressing, feeding, or attending to toilet needs. We are in desperate straits. Her oncologist, Dr. Agnihotri has stopped all cancer treatment until she grows stronger. Her legs and arms are terribly swollen, she must use a catheter, and, even though the delusions have subsided, she remains disoriented and in considerable pain.

AIMEE'S CURRENT MEDICATIONS

Daily medications

• Lantus--15 units at bedtime

• Humalog--sliding scale

• Gabapentin--600mg three times a day

• Protonix 40 mg. once a day

• Topiramate--200 mg at bedtime.

• Topiramate 50 mg in the morning, 50 mg in the evening

• Lorazepam –1 mg four times a day [Ativan]

• Olanzapine—10 mg twice a day [Xzypressa]

• Hydromorphone –8 mg every four hours

• Diphenhydramine 50mg/mL -1-2 mL every four hours as needed for nausea and vomiting

As needed medications

• Sumatriptan tablets and nasal spray for migraine disorder.

• Weekly port-a-cath access change at the AIS Cancer Center

MEDICAL EXPENSES NOT COVERED BY INSURANCE

From Patty, Aimee's mom

Every month I order the following supplies from Allegro Medical.com and pay for them out of pocket. These supplies constitute critical needs for my daughter. She needs the syringes to draw up her medication and administer it via the port-a-cath surgically implanted in her chest wall. She must use two flushes per medication injection to keep the port-a-cath tubing flushed and in good working order. The nurses at the AIS Cancer center directed her to do so. In addition, I pay for the listed insurance and related medical expenses. My daughter receives Medi-Cal benefits, but they do not pay for her doctor’s visits or port-a-cath access changes and supplies. Health Net covers all else except for the following:

Every month I spend at least

$290.00 for saline flushes—no insurance pays for them.

$57.00 for 3ml syringes

$ 24.00 for insulin syringes

$100.00 for glucose levels test strips

$225.00 for low FOD MAP liquid meals [she cannot ingest nor utilize solid food]

Health Insurance Payments

I taught in public schools for 30 years and then retired. Public school teachers do not get social security benefits. We get Medicare Part A, but we have to pay for the rest of our health care out of pocket.

Here is the breakdown:

$995.00 monthly for Health Net PPO health insurance for Aimee Rude

$55.00 for dental and vision insurance

Medicare Part B--$402.00

Medicare Supplement for my spouse and me--$258.00

Silver Script [for medications] -- $58.00

Delta Dental and Vision--$110.00

Total monthly medical expenses--$2554.00. That is the baseline. Other medical expenses that I must pay out of pocket can and do arise.