Thursday, August 18, 2011

CF clinic day - annual tests and all...

As most of you know, part of the routine of a CFers life is to attend a CF clinic every 3 months. At the accredited CF clinic, Andrea meets with specialists to discuss how things are going with her and all her CF needs. This includes (for the most part) meeting with a pulmonologist, gastroenterologist, chest phyisotherapist, dietician, social worker and a pharmacist. We also always visit with a respiratory specialist and Andrea does what is called a PFT (pulmonary function test).

The purpose of a PFT is to get a reading of how her lungs are doing. They read the numbers of the FEV and FEV1 (forced expiratory volume). The FEV1 seems to be the one they really look at most (forced expiratory volume in the first second). Andrea started doing PFTs when she was 5 and we've been lucky that her FEV1 has always been high, usually above 100! Which means her lungs are doing better than most people that don't even have CF.

Here's a quick video of Andrea doing her PFT. This was shot in 2009...

Today (8/18/11) was an annual clinic visit. The annual visit consists of what I mentioned above plus lab and other tests: blood work to check vitamin levels, rule out infection, assess iron levels, check for liver disease, nutritional status, and CFRD (cf related diabetes). Andrea also has to have a chest xray and ultrasound of her liver, stomach, gall bladder, intestines, plus they do a glucose tolerance test as well.

We started our morning checking in at 7:00 a.m. to get paperwork ready for all the tests. We then went to start the first of a few vials of blood to be drawn. This time it was only 7. She must be fasting during this portion. She thens drinks a high glucose concentrated drink and must come back for more blood to be drawn 2 hours later. We left there at 7:30.

We headed to radiology and didn't have to wait long. First was the ultrasound, which takes about 20 minutes, then the chest xray, that took about 10 minutes. We were ready to head to get PFTs done.

The PFT room has changed a bit and they have a new computer system to run the tests. I waited in the larger room, just outside from where Andrea does her PFT. I couldn't believe what I was hearing. When she was doing the second of three standard breathing techniques, I turned to look because she sounded like a power horse. Her breathing sounded so great and when we got the numbers they proved it to be so. Her FEV1 was at her all-time highest of 119!

By the time we finished with PFTs and got to the CF clinic it was 8:30. Our appointment wasn't until 9:30 but they got is in within minutes. She got weighted again, and measured AGAIN, and had her blood pressure checked. We couldn't wait to tell everyone how PFTs had gone.

We met with the nurse first and she handed us a sheet of all her meds, to go over them and make sure all was accurate. I noticed it didn't include the calcium we started giving Andrea about a year ago. There are CF standards that is followed regarding meds one must take depending on symptoms one is having: miralax to help with bowel obstruction, pancreatic enzymes to assist with food fat absorbtion, azithromycin antibiotic to help avoid lung inflammation, singular and nazonex for sinus allergies, ABDEK vitamins to help maintain levels at a norm, ursodial to assist with her liver cirrhosis (inflammation and scarring), advair and xopenex for asthma symptoms, pulmozyme to keep mucus thin so it's easier to cough up and spit out AND on top of all of these--on our own--we give her omega 3/6 pills plus the calcium.

The best part of going to CF clinic is the team role we each play. Of all the meds mentioned above, the doctors did not prescribe the omega and calcium. There is no study saying this helps, but with research I've done I believe it helps overall and decided to start her on the team makes note of it because it plays a huge role in her CF treatment. Whether they like what I do with Andrea or not, together we keep each other informed of her overall healthcare needs and proceed, keeping in mind that things may need to change depending on what transpires as she grows older.

We met with the social worker next. They're starting a new program with the CF teenagers to help them stay compliant with their CF protocol. It's available through Novartis, the makers of TOBI (inhaled antibiotic). Lucky for us, Andrea is very compliant...but through the questionnaire she filled out she did notice she needs to work on eating a healthier breakfast.

By the time we were done with the social worker it was 9:30 and time for the second of blood to be drawn. Normally it would have only been 2 vials more, but because Andrea volunteered to be part HOLA-CF they took a total of 5 vials more. This is a big deal, because Andrea does not like needles and she used to faint when having her blood drawn. But she was a trooper and did fantastic!

HOLA-CF is a study of Health of Latin Americans with CF and they are investigating potential genetic modifiers among Latinos with CF. Andrea gets $20 to participate in this study. BONUS!

Back we went to CF clinic. We met with Dr. Bacon our pulmo doc, then with Elaine our dietician, Dr. Sloven the GI doc and lastly with the nurse so Andrea could have her throat swabbed. This is to check for any bacteria growth inside the lungs. We left clinic with everyone elated of Andrea's PFT numbers and her overall excellent health. And just when we thought we were done...we had to go to the diabetes clinic and meet with our endocrinologist.

CF affects not only the lungs, but the digestive system, liver and pancreas. Because of that many CFers will get CF related diabetes. Thus the reason behind the glucose test. We met with Dan and Andrea's fasting numbers were great, under 100, but her non-fasting numbers were above the 140 range. It proves that Andrea's body has a hard time handling too much sugar and that we just need to avoid an overload as much as possible. Thankfully she does not need insulin and thankfully she's not a sweet tooth or a simple/carb junkie!

By the time we left the hospital it was almost noon. Five hours of meeting with docs, having lab work and tests done, talking and repeating ourselves over and over again. We went out for lunch, ran one errand, got home and we both hit the sack. Andrea napped for almost 4 hours and I for almost 5.

So there you have it. A very long-ass blog about our long-ass day during an annual CF clinic visit. I promise not to blog about it again, but I get asked a lot about how our clinic visits are, especially the annual ones. Now I have it in writing and can direct people to come read this. And if you've read this far...thank you! Thank you for your interest in Andrea's life and taking time to learn more about it.

I think I need another nap! :)

No comments:

Post a Comment