“Playing the Cards Life has Dealt”
My day begins by doing a breathing treatment along with airway clearance. I used the ThAIRapy Vest up until July of 2010. I received the Respritech-Smart Incourage Vest in July of 2010. They are both a device and system for clearing excess mucus from lung airways (bronchi and bronchioles). It uses a compressor to inflate and deflate the vest rhythmically at timed intervals and thus imposes high frequency chest wall oscillations that are transferred to the lungs. These oscillations thin thixotropic airway mucus, facilitating its removal by coughing.
I use a nebulizer to inhale my aerosolized medications. I do breathing treatments four times a day. I like to call it “smoking my pipe” and doing the “shake shake.” Breathing treatments take anywhere from fifteen to thirty minutes, possibly longer depending on what medicines I am inhaling.
Postural drainage and chest percussion (PD & P) also called postural drainage and clapping (PD & C) is another airway clearance technique. We like to call clapping, “beating,” no not in a bad way but that is basically what is happening when doing PD & C. There a few other ways to do airway clearance such as; the Flutter Valve, Accapella, Incentive Spirometer, percussor (“vibrator”), Intrapulmonary Percussive Ventilation (IPV), The Frequencer, breathing and coughing exercises. The goal of airway clearance is to loosen up the secretions in the lungs and make them easier to cough out.
Vitamins are vital in caring for CF due to the fact that not all nutrients are absorbed during digestion. I need extra calcium and vitamin D to help my bone health. It is quite easy to fracture a rib while coughing, which I have done. Therefore bone health is a big concern. I take a number of different oral medications and they are changing all the time.
Exercise is a very important element to the care plan also. For many years I fought it. My doctor would tell me that if I would just exercise I would probably feel better and have a better quality of life. Like many others, exercise was never one of my favorite things to do in my past time. I did notice that I felt better when I did exercise. Walking, biking, elliptical, etc are all great ways to keep the lungs open and working strong. It also helps keep your oxygen levels (O2 saturation) up. Exercise also helps your immune system to keep fighting.
“Club Med” trips; I’m not talking about the Club Med with the beach view. Many CF patients call the hospital “Club Med,” “the hole” or “lock up.” I frequently have to go “Club Med” for a “tune up.” A “tune up” involves going into “Club Med” for I.V. antibiotics, lots of respiratory therapy, lung function tests and x-rays. “Club Med” stays can be anywhere from just a few days to a few weeks for me. The length of hospital stays depends on how well I am responding to treatment. The hospital is my second home. The nurses become family very quickly because they are there when the family and friends cannot be. Knowing and having the same nurses and respiratory therapists helps to make the time in “Club Med” much easier to deal with. It is hard to be away from normal everyday life while in the hospital. I usually try to get discharged as soon as possible because I want to get back to somewhat of a normal routine at home. I hate the fact that when I am in the hospital, life seems to stop for me. It also interrupts the normal everyday life of my family. I try not to make a big deal out of it but then the truth comes out. I say that it is fine if people cannot visit/hang out with me while I am in the hospital but that is not always the truth. On the other side of that I don’t like the feeling of “entertaining” people that visit. I want to do what you would do if you visited at home like watch TV or a movie, play a game or eat yummy outside food. Having people come to see me helps the time go by. I feel bad that they had to fit seeing me in the hospital into their schedule. Yes, I know it may sound silly to you but these are the things that go through a person’s head that has a disease. We do not want to be a burden to anyone; therefore we will say we are fine when we are not.
Once out of “Club Med” the majority of the time I will have to continue I.V.’s at home. Each I.V. antibiotic has a different dosing which determines the length of time between doses, i.e; 4, 6, 8, 12, 24 hours. Every antibiotic has a different infuse rate, some may take a few minutes others can take an hour or more. There is always a lack of sleep while on I.V.’s. For the most part I am on I.V.’s for a total of three weeks but if I am not getting better it is longer. While on I.V.’s it is somewhat hard to be “normal” because I am limited on what I can do. I cannot take a normal shower without covering the I.V. site to protect it from getting wet. If I am wearing a shirt that shows my accessed port then I get stares and I am quick to tell them what it is. This gives me a chance to educate about CF. Even if I am not on I.V.’s you can still see the scars on my chest and I still get stares. People seem to be scared to ask what it is so if I notice them staring I will bring it up in the conversation. My mood depends on my response. I have been known to say that it is a “breast pump” that I can inflate my chest if I want to.
Many people ask why I have to go in the hospital to get started on I.V.’s and why I can’t just do them at home. Every doctor treats differently as every patient responds differently. My previous doctor in KS preferred that I go in the hospital most of the time because I have so many adverse/allergy reactions to a number of antibiotics. It is easier to moniture how antibiotics are working when inpatient rather than at home. When at home the home health company sends out a weeks worth of medicine and supplies at a time. If it happens that one of the antibiotics doesn’t work or I have a reaction then I have supplies and medicine I don’t need but had to pay for. Another reason my doctor preferred that I go inpatient is for the airway clearance (clapping) that I get 4 times a day while inpatient. My doctor preferred for me to alternate clapping and the vest. He would probably even love for me to get clapping all the time like when I was younger when there was no vest.
We recently moved to Tennessee due to military orders which means I had to leave my doctor of almost 20 years. It has been a smooth transition so far. My new doctor has a different way of doing things which I will learn over time. I have a hard time with change. I am trying to make the best of this new journey in my CF care.
It is hard to compare anyone persons CF with another. The same goes with their treatment plan. Not a single person with CF is the same as another. CF affects every person in different ways and everyone responds to different therapies.
Taking care of myself is a full time job. I use to work a full time job for about three years working in a doctor’s office as a receptionist. I then moved to the administration office for the same doctors group and began doing medical billing and coding, which I loved. I had to quit back in 2004 due to how long it was taking me to bounce back from a CF exacerbation. I loved working but it just became too much trying to do all my treatments and working. It was wearing me out. I would work even when I did not feel good but that caught up to me. I then began having to take more and more days off when sick so that is when I decided enough was enough. I had a great relationship with my boss. It would have been great if the company I worked for still allowed employees to work from home but they had stopped allowing that a few years prior.
I then applied for Social Security disability May of 2004 and was denied the first time. They said that I was treated and my symptoms had alleviated after being discharged from the hospital. Most everyone gets denied the first time they apply for disability and SSI (Social Security Income) so I was not surprised by the denial. I was however surprised by the reason for denial. I just wanted to call and yell at whoever made this decision and tell them they are insane. CF is a progressive incurable genetic disease, it is not as though I broke my back and it would heal and I could get back to normal life at some point. Of course I appealed the decision with a lawyer and was finally approved on March 16, 2005.
I am somewhat limited on what I can do but I usually push the limit. I do have a travel nebulizer so that helps for when I am on the go. My goal is to live life to the fullest and to try all the things that I can so that I can say at least I tried. If I had it my way I would travel all the time, but the bank account does not allow for that.
I am a bonus mom to two great bonus kids. We say bonus mom because most step-mom’s in stories are usually not nice. The kids and I came up with bonus mom and bonus kids. It is very fitting because they are defiantly a bonus in my life. My everyday life when we have the kids is that much busier. So needless to say being a wife, bonus mom, daughter, granddaughter, sister, aunt, friend and a person with CF makes for a busy life. CF does not take breaks, though I wish it did. I have learned to just keep going even when it seems like it is too much. I try to fit CF around my busy life but in all actuality I have to fit my busy life around the CF aspects of my life.
Many people ask about lung transplant and whether it is an option for me or more so if it is something that I want to do. My answer is yes, yes. It is something I will approach if/when the time comes. There are some people who have the mentality of “God gave me one set of lungs and I will use them until I can’t.” I on the other hand say, “God gave me the set of lungs I have and when those decide that they have had enough, I want another set so I can keep on keeping on.”
Lung transplant survival rates vary greatly from patient to patient. Survival rates are: One year after a lung transplant, four out of five patients are alive. Five years after a lung transplant, two out of five patients are alive. (Source: http://www.healthguideinfo.com/respiratory-conditions/p80705/)
I have many friends that are more than 5 years post transplant and some that didn’t make it to the 5 year mark. Once again it is hard to compare one person’s journey to another because we are so different. It is all a matter of how your body takes to the transplanted organs. I am willing to take the chance if it means that I can get any extra time with my family. I would feel like I was a “quiter” if I didn’t try and get listed for a lung transplant. It could come back that I do not qualify but I would at least know that I tried. I do not want to say, “I wish I had…”
Another normal thing for people with CF is chest ports and PICC lines. I have had many PICC lines (lost count) and four ports as of now. The first one was a pass port in my right arm when I was 17. I opted for the pass port in the arm because I didn’t want a scar on my chest. I did not like the pass port in the arm because I still felt limited like I did when having a PICC line in. I had that port a year and it got infected and had to be removed. When the pass port was removed they placed a port a cath in my upper right chest. I had that one for a year and never used it. I gained a significant amount of weight during that year and the catheder began to pull in my neck and bothered me so I asked for it to be removed. The next time I needed I.V.’s I asked for another chest port. I was granted my wish and after having that port in for a year or so my doctor was thinking that I was possibly allergic to the material that the port was made of because my eosentifils were elevated. Eosentifils in your blood show when your body is reacting to something whether it is in your body or environmental. My doctor had me remove the thrid port because of the elevated eosentifils which I was not happy about. I had to endure a few PICC lines between my third and fourth, current, port. I have had the fourth, current, port since December of 2006. Ports can last a long time. You have to flush them every month when not in use which consists of sticking a needle in the port and flushing saline and heparin through the line to keep it open and working.