Caroline Rhodes spends three hours a day just trying to breathe because of her cystic fibrosis – and now a national grant of $88,000 will help make it easier.
The grant from the Cystic Fibrosis Foundation was awarded to Dr. David Lee, medical director of the Cystic Fibrosis (CF) Program at Community Regional Medical Center and board certified in pulmonary and critical care medicine. The grant helps facilitate the addition of a dedicated CF pharmacist and provides training for the specialized treatment of CF patients – like Caroline whose entire day is spent working to breathe better.
6:45 a.m. – she wakes up and takes her vitamins, two different inhalers and an inhaled medication.
|Sandra Shahinpour, Cystic Fibrosis pharmacist (left), converses with Dr. David Lee (right), medical director of the CF Program at Community Regional Medical Center. |
- 9:30 a.m. – she has a vest treatment that consumes 30 minutes of her day to help break the mucus from her lungs and a pulmozyme treatment once a day.
- At noon she takes her inhaled antibiotics again.
- 6-7 p.m. she’ll have dinner and take two inhalers and have vest therapy treatment before bed.
- 11 pm – One last form of medication which she’ll need to convert into a liquid so she can inhale it for the night.
Continuous medications can range from $1,000 to $200,000 a year and are taken by mouth or inhaler. At least an hour on the respirator vest – a total of three hours a day – is needed to fight the CF daily. One of the major benefits the grant brings is special training for the CF team pharmacist, Sandra Shahinpour.
“The amount of medication affects so many parts of the body,” said Dr. Lee. “Sandra’s role is not going to be just drug to drug interaction, which is plentiful, but also specialty compounded drugs to fit each patient’s unique needs.”
During a recent clinic visit, Dr. Lee pointed out the concerns that Carolyn currently has with the medication in liquid form.
“A lot of the medication is injected, and unfortunately to hit the lungs we need the medication to be inhaled so we can target the lungs. We take the medication and train the patient how to compound it into a liquid form to inhale it,” Shahinpour said.
|Caroline Rhodes talks to Sandra Shahinpour and Dr. David Lee. |
Before the UCSF Fresno CF Program opened at Community Regional Medical Center, Caroline would have to gather her family each month and drive to San Francisco to meet with her specialist and refill medications. If she had an emergency she would have to explain her symptoms over the phone. Having her specially trained care givers here means faster treatment and convenience.
“I’m here to inspire and teach other people about Cystic Fibrosis. The whole goal is teach, train, and prepare my staff for specialty cases,” Dr. Lee said.
Thirty-five-year-old Caroline is expecting her third baby in July 2017 and says with her condition, it’s nice to have help so close to home.
“Having the clinic here and a pharmacist dedicated to CF will save time with my medication questions and problems, such as having premade medicine rather than me having to mix it myself and have taken other variables to get the end result, ” Rhodes said. Esther Oganyan and Mary Lisa Russell reported this story. Reach her at firstname.lastname@example.org.