Sunday, January 16, 2005

A Day of Rest

Last day of the patch study today!!! Wife and I both received our $90 checks today. Unfortunately, the bank is closed today and tomorrow for Martin Luther King Jr.'s Birthday. Kids have no school tomorrow either and they are very excited.

I woke up this morning coughing violently and in serious pain from my arthritis. I couldn't move my shoulders or my left arm and my neck was very stiff too. I had to take two lung treatments this morning to recover from it. I do not like mornings like this at all.

After the patch, we went to the pharmacy to pick up some prescriptions. CVS has this great deal with their Prescription Card offer. Every two prescription that you purchase from CVS, you will receive one dollar in Extra Care $$. Extra Care $$ can be used in any CVS store to use towards any purchase. I have 22 prescriptions myself which will turn into $110 at the end of the year. Can you say extra X-mas money to spend on cards and stuffed animals.

I have some family members that are asking about my current status as a CF patient. They also want to know how well I can get around and how often I cough and how much I cough up. Here are a few details of my life as it stands right now.

I am currently at 146 lbs and 18% lung capacity. When I say 18%, I am referring to a measurment that is on a breathing test, specifically the FEV1 result. When I go to the doctor, I take a pulmonary functions test (PFT) that measures the capacity of my lungs. There are several results from this test to look at. Here is the result of my PFT dated 12/28/04.

  • FVC                 1.51 Liters     27%
  • FEV1                 0.78 Liters     18%
  • FEF 25-75%     0.27 Liters     6%
  • FEF 50%           0.33 Liters     5%
  • FEF 75%           0.12 Liters     4%
  • PEF                 2.76 Liters     28%

    I do not know the meaning of some of these results, but the one that the doctor looks at is the FEV1.

    The FVC is the Forced Vital Capacity; after the patient has taken in the deepest possible breath, this is the volume of air which can be forcibly and maximally exhaled out of the lungs until no more can be expired.

    The FEV1 is the Forced Expiratory Volume in One Second; this is the volume of air which can be forcibly exhaled from the lungs in the first second of a forced expiratory manuever.

    Since the lungs to not expire the entire capacity of air inhaled, the best measurement of lung capacity is the FEV1, which here it is 18%. November of 2003 it was at 26%, October 2002 it was 28%. Way back in November 1997 my FEV1 was measured at a high of 50%. That was the year I met my wife at church.

    I cough just about every 5-10 minutes. People tend to think I have allergies or have caught a cold. I can fill a 5 oz. cup with phlem in a 12 hour period on a regular basis. This puts a strain on my abdomen and back and I have been known to pull muscles or have an upset stomach due to the coughing. Everyone has good days and bad days. On my good days, I can walk 1-2 miles in 2-3 hours. I will have to stop and catch my breath at times, or even have to use my portable nebulizer to open my airways. On bad days, I will either not be able to get out of bed or I will have my oxygen on all day. I will walk at a snails pace, looking like an old man crossing the road. I am able to have sex, but I have to be having a good day. It will wear me out to a point of coughing 'til I vomit, or I have to do a neb treatment immediately. Very rarely will I not have to do a neb treatment afterwards. It will then be 3-4 weeks before I will have sex again. My wife says that it is worth the wait.

    My diet is a 5000 calorie diet. No that is not a misprint. Five Thousand Calories. It is quite hard and expensive to take in that many calories in a day. I drink two Ensure Plus cans, three times a day. That alone is 2100 calories. I eat alot of bread and pasta. I crave fish, chicken, salad and milk, but I do not like cake, cookies or chocolate candy bars. I drink too much Pepsi and Coke, but I munch on potato chips and pretzels alot along with popcorn with my kids. Its hard to feed 2 kids and myself on $500 a month for food. I do not know how my wife does it, I would probably go insane trying to understand how.

    I said befor that I take 22 prescriptions. Here is a list of what I take:

  • PREDNISONE steroid
  • PLAQUENIL for pain and swelling of joints
  • PROTONIX for acid reflux
  • MOBIC for arthritis
  • TRAMADOL HCL for arthritis
  • AMBIEN to help me sleep
  • ZITHROMAX antibiotic that helps lung functions in CF patients
  • MEPHYTON Vitamin K
  • DRISDOL Vitamin D
  • HCTZ to prevent water retention caused by the steroid
  • SINGULAIR for asthma
  • BECONASE for a runny nose
  • VITAMIN E 400IU (two twice/day)
  • CALCIUM CARBONATE 1.25GM (two once/day)
  • FOSAMAX to prevent bone loss due to osteoperosis
  • BETA-CAROTENE body turns it into Vit. A
  • ADEKS Combo Vitamin containing Vit. A,D,E and K
  • COLISTIMETHATE inhaled antibiotic
  • ALBUTEROL my neb treatment to open the airways and loosen phlem from the walls of the lungs.
  • MIRALAX for regularity during constipation
  • ULTRASE MT20 enzymes to help digest food
  • PULMOZYME breaks down the dna of mucus, making it easier to cough up.
  • CELEXA anti- depressant

    CF effects all of the glands in the body. Mainly it effects the mucus membranes in the lungs, the sweat glands in the skin and the pancreas. The pancreas does not secrete enough enzymes to digest my food properly. Because of that, I must take Ultrase MT-20 with my food to help digest it. I take 5 pills with meals and 3 pill with snacks.

    I'm not sure what else to say about my daily life, comment if you would like to know more or have suggestions to help inform my family. Thanks in advance...I'm Done.