Long Update!

I've been meaning to update this for a while now. So let me back track:


June 2nd I went back to the CF doctor here in Wichita for a 1 week post hospital stay visit. My lung function was holding steady (31%, 50%) I felt great.

The following Tuesday, the 8th my dad and I loaded up the car and made our way to Omaha. I watched the sun set over Lake Manawa, sitting at the end of the dock... a beautiful place to sit quietly and meditate, or just listen, not think. It was a very welcomed moment in what I knew to be a busy next few days.

Wednesday, the 9th I saw my ENT (ear, nose & throat) doctor, who did my last sinus procedure the summer of '09. My sinuses look about like you would expect a CF patient's sinuses to look - inflamed and butchered. I was glad to hear that they looked "normal" because my primary care doctor in Wichita was somewhat alarmed at my sinus CT scan - CFers know what I mean. After that appointment I saw the endocrine and CF teams at the hospital all the way across town. The visit was less of a check-up and more of an exit-appointment (although my PFTs were the higest they’ve been in over two years, FEV1 was 35% and FVC was 57%. I've decided that I'm going to transfer my CF and CFRD (CF related diabetes) care to Wichita, following solely with the center here, instead of both Wichita and Omaha. I'm torn about this decision for a couple reasons:

Firstly, it's no secret, but Omaha sees more individual patients than Wichita (larger population in the vicinity) - thus giving them an overall greater experience in dealing with a variety of cases and issues. It's always comforting to know that when you go to your doctor for a problem, he's seen it a million times and knows exactly what to do.

Secondly, I "grew up" under the care of the Omaha CF team. I began to get involved with my own care when I went away to college, I transitioned to the adult clinic about the same time, so I was really learning about CF in a new way, as an understanding and autonomous adult. When I go to the doctor alone, without a parent, they have to talk to me. I get all of their attention, focus, eye contact. I'm free to ask questions, joke, and bulid raport as the patient. When a parent enters the room, even if you can manage the dauntiung task of getting them to remain quiet, they automatically fall into the parent role, regardless of how old or competent the patient may be. They get half the eye contact, they get to ask questions, make comments, go off on tangents or tell semi-related anectdotal stories… ad nauseum. And the doctor humors them. What’s really happening is the parent is trying to gain back the control over their child’s disease and care. While I want to keep Mom and Dad in the loop, it’s important for me to maintain my independence in this area, even though I’m unable to be independent in other areas.

Those things aside, I know that splitting care between two centers is not as beneficial as it seems it should be. At first I thought that I might be getting the best of both worlds – but really, it was the opposite. The new center didn’t feel like they had the authority to act immediately, rather waiting for consult from the old center before prescribing anything, meanwhile I’m waiting to get IV antibiotics or a PICC line, getting frustrated myself, wondering what the hell is going on that all of this can’t be done sooner. Everyone ends up frustrated and touchy and the patient (ME!) suffers. I feel like now that this is settled, I really will be getting the best of both facilities, because Wichita is now the sole caregiver and we (as a team) are able to consult Omaha when there is a question regarding my history or anything else, without feeling like we’ve burned any bridges.

The 10th saw Dad and I on the road again, headed to Minneapolis. Early on the 11th I had appointments at the U of Minnesota. My PFTs were still the highest Minnesota has seen at 31% and 43% but down a little from two days before – goes to show how humidity, barometric pressure, air quality (car air) and allergies can affect pulmonary function from day to day, or even hour to hour. I wasn’t too disappointed in the dip.

On the 12th we headed back to Omaha and then Wichita on the 13th.
Later that week I got my Lung Allocation Score from my visit, and it was 34.93 - which I think is lower than it's been in the past. I didn't have a 6 Minute Walk test done while I was there, so I have to get it done here. I think that will help my score out, since I know I require more oxygen than I have previously. When I get that done and sent to Minnesota, they will update my LAS.

[Side Note: A 6 Minute Walk test is where you wear a pulse-oximeter which reads your pulse and the % oxygen saturation in your blood while you walk for six minutes. A respiratory therapist records your pulse, oxygen saturation, oxygen usage and distance every 30 seconds for the whole six minutes. This gives them an idea of how "disabled" you are. I think they should add a video element to the LAS. To see me cough gives a very clear picture of my dis-ease.]

Ideally, I would get called NOW and wouldn't have to do it! :) I was hoping that the holiday weekend might offer at least a call to me or my friend CysticGal - but no luck as of yet. She has had two dry runs so far. I feel like it's her turn. Or mine. I have been waiting for over two years. I told CysticGal that I feel like we are the last two to get picked for kickball. In all reality, that probably would be the case, since neither one of us would really have a lot to offer an athletic team. But that won't always be the case.

At the end of June, the CF community, nay, the world, lost a dear boy named Conner Reed Jones to CF. His mother shared via her blog, his passing, with amazing clarity and beauty. The world celebrated his life last Wednesday - all over people released red balloons for Conner. Red was his favorite color. His funeral service was even shared with the internet community. In it, his mother wrote the most beautiful and touching eulogy. Anyone who read or watched her family's journey would be touched. It's always sad to lose someone we love so much, especially a child, but her strength is a wonderful testament to her faith in God and in love - concepts which Conner knew well, despite his young age of seven. Which is why I released seven red balloons into the sky on Wednesday. Attached was a card, on which I wrote, so that whomever finds the balloons will know who Conner is and why he was so special. Watching the balloons float upward, I had to shed a tear or two - it was just that powerful.

That's about all for now! I need to do better at updating this - it worries people when CFers disappear for any significant length of time. I know I worry when I don't hear from my CF friends!