During one recent hospital visit Jerid and I heard that they were moving the CF patients to different floors of the hospital and the nursing staff on 2 East in the University of Utah Hospital would no longer be caring for them. I was very upset when I had heard this. Some of the nurses and HCAs were not happy about the news either. I had joked about staring a petition and sending it to the hospital admins but the more I thought about it the more I felt something had to be done. Those wonderful staff knew the CF patients and that floor was a second home to them. I view the nursing staff as the CF patients other mothers. They have watched the CFers and took care of them.
When a child is sick who do they want? Their mother. I felt like the hospital was breaking up a family. I talked with more of the nursing staff and a few of the CF patients who were admitted at the time and they gave me their full support in the petition idea. With the help of Jerid’s dad I got the petition written. It said:
"University of Utah Hospital putting Cystic Fibrosis (CF) patients care on the back burner! The U of U plans to disband its CF care unit and reduce care of CF patients levels not seen since the 1970s. This atrocity will place CF patients in a situation that will be life threatening!
The Cystic Fibrosis patients at the University of Utah hospital need special care. The specially trained staff at the U of U was designed to treat them in the event of hospital stays, which can last up to two weeks or longer. It has been brought to our attention that with the new hospital expansion they are breaking up the 2 East unit which is the unit trained for CF care. This move is due to happen in October this year (2009). The U of U hospital admins are doing little to ensure the CF patients are going to get the proper care they need. They have said they will adjust where ever they go. This is not acceptable care for CF patients. There are several patients who are in and out of the hospital several times a year. Sometimes anywhere from 3-8 times a year or more. When CF patients are on another floor other than 2 East they do not get the proper care. In all cases the CF patient has to train other nursing staff on how to care for CF patients, some of which are not responsive to their help. They need a specialized unit with their highly trained and caring nurses that are currently taking great care of them.
According to www.CFF.org: "Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). It is a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs, and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. About 1,000 new cases of cystic fibrosis are diagnosed each year. More than 70% of patients are diagnosed by age two. More than 40% of the CF patient population is age 18 or older. The predicted median age of survival for a person with CF is more than 37 years."
The average cost for an inpatient Cystic fibrosis stay is $60,000. The amount could be more depending on the type of care the Cystic Fibrosis patient needs. These wonderful patients need your help. Please join us in our cause to help better their health care."
Here is where I had another epiphany. I realized how much CF stays and the costs of their meds were and some do not have medical insurance, so with the help of some other CF patients we came up with an idea of starting a foundation. Of course we knew we would start small but we wanted to help the patients pay for the medications they needed and if at all possible pay for the meds out right. We called our foundation "Born to Breathe Easy." Our mission statement is "Our mission is to help improve the quality of life for those fighting Cystic Fibrosis (CF). All CF patients need access to the medication they need to maintain a healthy lifestyle. Every little step counts toward another year and eventually a life-time so support in the research of new treatment is a crucial and vital part in helping any and all CF patients around the world because everyone deserves to breathe easy."
We have quite a few board members who are CF patients. I am honored to have them there. They know more about their healthcare than I do. They have done it almost their entire life. Only a few are friends who have been touched by a CF patient. One of our board members is doing a fund raiser for us once a year. All our board member are volunteers. No one will be paid for doing what we do. We feel that the CF patients need the money more than we do. They are worth it to me and I do not mind donating my time. One day we hope that we can be big enough to help the CF doctors at the U of U hospital pay for their research. They work very hard and are awesome.
After talking to the CF doctors about the move I was given some good news. They were setting up a CF area with 10-12 beds and they will have nursing staff trained to care for them. Some of the nursing staff will be from their old 2 East unit. That was a huge relief and I did not have to deliver the petition to the U of U hospital admins. Of course the rumor was still going around that they were not going to do this and reassurance was one e-mail away. I would write one of the CF doctors and he was always willing to ease my mind. He and I agree that the rumor needed to stop going around because it was very upsetting and some of the CF patients talked about moving their CF hospital care to a hospital closer to them. The University of Utah Hospital is the intermountain CF care hospital and they get patients as far as Idaho and it is the only hospital in Utah that is trained to care for CF patients.
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