Thursday, July 31, 2008

My surgery.

Everything was fine. They gave me a nerve block in pre-op so my whole arm was numb until about 7:30 last night. Usually they use a stronger block that lasts at least 12 hours but that paralyzes the diaphram. Obviously with my CF the anaesticiologisy (sp?) didn't want to do that. I think I would have been fine without it though, the pain is not bad at all. I'm just taking half a percocet. The med they gave me to relax me right before doing the block was fun though. It made the picture on the wall dance and swirl. I was so busy watching it that I didn't notice the injection in my neck at all.

Tuesday, July 29, 2008

Neighbor's Suicide

I came home today and Brian (my soon to be exhusband who I am living with for another month, long story) said that our neighbor had committed suicide yesterday. Brian looked pretty upset about it. All I could think was how dare you be upset! He put me through hell with his suicide attempt, I would think he'd be happy for Gary.

Ok, that's pretty twisted I realize this. But come on! Brian didn't even want to get help afterward. The only reason he did was because I said I would leave him if he didn't do something. I ended up leaving anyway. The last 8 months before I told him I was done were some of the worst in my life. And he has the nerve to be upset over this guy killing himself?? If he wants to be upset be upset for his wife!! In a few days I am going to stop by and let her know my story and that I am here if she wants to talk.

If this woman was half as miserable in her marriage as I was in mine then I truly feel for her. Even more if this was all a suprise to her. Part of me knew that day that I got a call at work that Brian had been taken to the hospital that he had hurt himself somehow. And I was right. I really realized how unimportant I was to him that day. To me there is no more selfish act.

Obviously I am still angry and bitter over the whole thing. Who wouldn't be? There are days that I wish he had been successful. At least then I would have been taken care of for the rest of my life. I would have military widow's benefits plus his life insurance. That would have been the nicest thing he ever did for me.

Monday, July 28, 2008


So the day after tomorrow is the big day! I get my shoulder fixed! I suppose I should fill you in on why this happening.

In high school I was an avid volleyball player, I LOVED it! One day at practice I dove for a ball and felt one of the things no athlete ever wants to feel. The ball of my shoulder was ripped out of the socket. I had landed at a weird angle and twisted my arm around. I almost blacked out from the pain. When I stood up it slid back into the socket, again NOT a pleasant feeling. I went and told my coach what had happened. We got some ice on it and I sat out for the rest of practice.

Luckily that day I had an appointment with my chiropractor who was also a licensed physical therapist. He examined me and said I was going to be in some serious pain the next day. I didn't feel much at the time because I was warm from practice but I had strained muscles in my chest, back, neck, and side because of the force it took to pull my shoulder out. I was in very good shape at the time so my muscles should supported my shoulder. But I had twisted my arm with such force that it popped out anyway.

A few years later I was swimming and not even thinking about made a similar twisting motion with arm to try and get something off the bottom of the pool. There went my shoulder again. I came back up and my arm was just floating on the water and I couldn't move it. I flipped out. I started to get out of the pool and when the water was no longer supporting my arm it went back into place. I remember the grinding feeling and the crunching sound it made. To this day that still gives me the creeps.

Fast forward about 9 years. I was always very careful with my shoulder. I obviously didn't want a repeat. Unfortunately I woke up one night and I was laying on my side with my arm above my head. This wasn't real comfortable so I started to roll over and it felt like someone was trying to rip my arm off. I'm not sure if it actually dislocated again or not (I take sleeping pills so I wasn't real with it mentally speaking) but I do know that I hurt it bad. This pain was worse than the first two times combined. This happened on a Friday night and it hurt all through the weekend but I was still able to function. On Monday I got into one of the family doctors and my primary care physician's clinic.

This doctor was of no help at all. I told him my entire history with this shoulder and he pretty much blew me off. Apparently he thought that since I had never had to go to the ER to have it popped back in that I couldn't have dislocated it. He kept talking about pinched tendons, but the ones he was talking about are on the front of the shoulder and I was having pain in the back. I was NOT happy when I left that clinic so when I got home I looked up orthopedic surgeons on my insurance company's website and called one of them.

I got lucky and got a very down to earth doctor! He listened to me, asked me lots of questions, and gave me a good exam. The exam showed that my left shoulder was significantly weaker than the right. He could also tell that the joint was "sloppy", the ball of my shoulder just kind of slid around and wasn't really held into place normally. He told me that he wanted to get an MRI (he was shocked that no one had ever ordered an MRI on me before) and that he expected that my cartilidge was torn.

A couple weeks later I had my MRI and then met with the doctor again. Sure enough, torn cartilidge. So there it is, the story of my bum shoulder. I can't wait to get this over with, it hurts pretty much all the time and just reaching for the phone at work it feels like its going to pop out again.

Thursday, July 24, 2008

My personal CF journey.

How did I come to learn I have CF? Well we can all thank my brother for that. He was born with and obstructed bowel that actually ruptured. He was very near death and had 16 hours of surgery on the first day of his life. Mom didn't get to hold him until he was a week old. These issues are fairly common for CF babies so he was tested. This was before genetic testing, so they did the sweat chloride test (basically to measure the amount of salt in his sweat). It was positive.

At this point my parents decided not to rish having another child that could have CF.....little did they know that I was already on the way! My parents have never been sorry that I was born though. Mom says she knew I had CF before I was tested because of the stuff I would cough up, and sure enough my sweat chloride level was off the chart. She doesn't remember the exact number but it was very high.

As I kid I always knew I had CF, what that meant, and that it is fatal. That is probably the best thing my parents ever did for us, being honest. I remember telling kids at a very young age that I have a disease. Some of the kids would get scare, but I just told them that it wasn't contagious and we would continue with our game.

When I was young there was a regimine I had to follow every day, but I didn't feel like it made me a freak or anything. In the morning mom prepared out nebulizers (nebs) and then did therapy on us (chest physical therapy, CPT, to loosen the thick mucus). Then we went about our day, taking our enzymes with food. It was normal to me. I caught cold frequently as a kid and that was the worst, just being sick. But I never had to go to the hospital like most CF kids. We went to our CF clinic every six months (we lived in central Oregon then and clinic was in Portland so it was a 3 hour drive). And that was my life.

I went to CF camp 3 years, and I must say I didn't care for it too much. I missed my friends at home. But one year I got to help teach the kids how to use a PEP. It was a brand new device to replace CPT. How wonderful! Mom had taken us to Seattle to get it since they had it before the clinic in Portland did. We still did CPT when we were sick since it helped get out the extra thick stuff better.

When I was abot=ut 16, shortly after we moved to Washington, I discovered a web site for people with CF. This opened up a whole new world for me! To be able to talk to OTHER people with CF was fabulous. I learned a lot there and made many great friends. I have always been considered fairly "mild" so it was interesting to me to talk with people who had gone through more than me. Sort of like having a crystal ball.

I started realizing that my CF was getting worse when I was about 21 or 22. I would get short of breath just walking to the bus station which was only two blocks away. I asked my doctors to try pulmozyme. Its a nebulized treatment that breaks down the mucus in the lungs making it much thinner and easier to cough up. Unfortunately it didn't seem to help much. Then I participated in a research study that used hypertonic saline for sputum induction (in english: I inhaled salt water to thin out the mucus so they could get a good sample). I was horrified at the amount of stuff that came up! I had no idea that it was even there! I was on the phone instantly with my doctor getting a perscription. The HTS has done very well for me!

I kind of went along just fine for a few more years. I would have the occassional cold or sinus infection, even got the flu once, but still nothing serious enough to get me a trip to the hospital. Then in November 2007 I was exposed to mono and caught it. The doctor was worried about me getting a secondary infection and ordered me to stay home for 10 days. I got that infection anyway and went on oral antibiotics. Those seemed to help a lot and I was feeling pretty good when the Sunday after Thanksgiving I went to the emergency room with minor abdominal pain. I figured it was probably an ovarian cyst but wanted to be checked out since it was on the same side as my appendix. Well, it turned out to be both and I found myself being taken to surgery at 5 the next morning.

Going under general aneasthisia is hard on anyone's lungs, but for someone with CF still recovering from an infection its asking for trouble. I just didn't seem to bounce back. On Christmas day I coughed up sputum streaked with blood for the first time. That was the deal breaker. I contacted my CF clinic and told them that I thought it was time for my first IV antibiotics. They set me up with the PICC team (PICC=periferally inserted central catheter, and IV line that is inserted in the arm and runs up a vein to your heart) and the home health care company. Luckily many CF patients these days are able to administer their own IV meds at home thus saving a trip to the hospital. Insurance companies usually prefer this too, saves them money. Plus hospitals are filthy and CFers don't need that exposure.

The IVs worked very well for me and my only regret was having waited so long to do it. After this I decided it was time to get more aggresive. I asked for a vest, a CPT device that you strap on and it literally shakes the musuca loose. I asked to start using another nebulizer, Tobi, and antibiotic to help keep the bacteria in my lungs under control better.

I just finished a second round of IV antibiotics in preparation for shoulder surgery (the story behind that another time). I don't want to end up with another out of control infection from surgery again. These days my lung functions (PFTs) are about 46-50%. Not as good as I would like, but I should have been more agressive a long time ago. Now I tell everyone I can to not sit back and wait for your doctor to tell you, ask them! I am hoping to be able to quit working and go on disability by the end of the year, or begining of next. I need to be able to take more time to focus on my lungs and hopefully get them in better shape.

What is cystic fibrosis (CF)?


What Is Cystic Fibrosis?
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). 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; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of Cystic Fibrosis
People with CF can have a variety of symptoms, including: very salty-tasting skin; persistent coughing, at times with phlegm; frequent lung infections; wheezing or shortness of breath; poor growth/weight gain in spite of a good appetite; and frequent greasy, bulky stools or difficulty in bowel movements.

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.
In 2006, the predicted median age of survival was 37 years.


I'm Jess, 26 years old, in the Seattle area and I have cystic fibrosis. But this in no way defines me.

I created this blog partly to help spread the word about CF, but also just to have somewhere to lay down my random musings on life.

So more about me. I work full time as a teller at a check cashing place. Its not the greatest job but its pretty low impact and the benefits at my company are awesome. I'm in the process of a divorce, seems I unknowly married a sociopath. But I am moving on, in January I met a great guy, we'll call hime Dave (names have been changed to protect the innocent). He's in the military and in March he got deplpyed, so that's been hard. We were only seeing each other for a couple of months when he left. He should be home mid-September.

I have lived in the Seattle area for 11 years and I absolutely love it here. Sure it rains a lot but the people are awesome and its never too hot or too cold. The scenery is amazing too. There are mountains all around, the Puget Sound for your whale watching pleasure, and green as far as the eye can see! Lets not forget the amazing coffee. Yes, the stories are true, we are coffee freaks around here!

That's all I can think of for now.