Thursday, May 7, 2009

My trip to Denver.

YAY DENVER!!! I am NEVER doing that in one day again though. I can't sleep on planes and I was SO tired. Oh well, live and learn.

So Patty was nice enough to drive me all around yesterday, thank you SO much! She picked me up from the airport, we drove through Wendy's so I could have some lunch and then I went to my appointment. National Jewish is a really nice facility. Its not a hospital, they do their admits through the university, so while it does have a medical office feel, it doesn't feel like a hospital. No one is walking around hooked up to IVs and junk. No patients are being wheeled around on gurneys.

I got checked in, then they called me back and took my vitals. The altitude didn't seem to effect me at all. My O2 sats were 98% and my FEV1 was 54% which is normal for me. My heart rate was 116 though, more on that later. The RT came in and did my PFTs and asked if I needed any supplies (nebs and stuff) and I said that I did so she hooked me up with some new Peris. Then the nurse came in and asked me more about my medical history and current meds. They had my records from the last year from UW but they wanted it from my own mouth which I liked since UW can never seem to update my med list. I also made sure to tell her that I had done IVs last month and that I was on prednisone right now for some inflamation.

Then Dr. Nick came in to talk with me. I really liked him! He's the head honcho there. He's very soft spoken, and his hair was kind of scruffy, but he seems like a very compitent and caring CF doctor. He listened to my questions and concerns. I almost fell off my chair when he said that he would have expected someone with my lung funtion to have had between 20 and 30 rounds of IVs in their life time. I've had 3. He wanted to get a chest CT (UW only did one once when I was having severe chest pain and they thought I threw a clot) to see what damage I have. He is also concerened that my heart rate is always so high (UW isn't). He said that he would expect to see a resting heart rate of 110 bpm in a patient who was nearing transplant. He wants to get to the bottom of that.

So I went up for my CT and met with the dietician and social worker when I came back. The dietician said that she is happy with my weight (121 pounds), I take my enzymes, rarely get constipated, and my last vitamin levels were fine. She said that she is pretty hands off unless I need something from her. She said that no matter how much she reads or works with CF patients she will never know as much about it as me!!! THANK YOU! So she didn't have anything for me and I didn't have anything for her. It was pretty much the same for the social worker. She asked about my lifestyle (live alone, have a boyfriend and a cat, when I was dx). She said that when I get ready to relocate they can help me with finding a place to live and anything else I might need.

The RT came back in to see if I had spit out a glob of goo for her and I hadn't. So she did something that UW has never done if I wasn't able to get something up....sputum induction. That's right, UW has NEVER done sputum induction on me. Nat. Jewish was not letting me leave without a sample. Thank you.

Dr. Nick came back in to check out my CT with me. He went through the whole thing with me explaining what we were seeing. I have never seen one of my chest xrays let alone my CTs. He said that the only trouble spots I have are behind my breasts which they see in CF women all the time. The vest just doesn't get that spot very well through the breast tissue. So he wants me to use my percussor in certain spots around my breasts while I lay on my back to help unplug those spots and drain the goop out. He said that I don't have a ton of damage and wasn't concerned about it alone. He did say that based on the damage he would expect that my PFTs would be higher. So he feels that I have more of an asthma component than I have been lead to believe. He wants to switch me to a different bronchodialator and see what that does. He also said that it may help my heart rate to go down as well.

If the change doesn't help my heart rate he wants to get an echo-cardiogram and have me wear a heart monitor for 24 hours to figure out what's going on there. Over all Dr. Nick spent a good hour and a half or more with me. I can't tell you what a huge relief it was to be listened to and have my concerns validated. He asked if he could send a letter to UW about what he wants to try. I told him that they know I am not happy and that I was coming for the second opinion, and to PLEASE write a letter.

I was very happy with my visit and looking forward to seeing how the new med works. I have an appointment for a study visit in about a month so I will see if my PFTs change at that time.


Megan said...

Woah. I've been having regular IV antibiotics since I was 7, I'd say I'd have had about 35 rounds of IVs, although thats just a guess based on the fact that I've had 3 -4 rounds of IVs a year since I started them.

Phew, you're one lucky lass compared to me! lol Xx

Courtney said...

wow your ears must have been ringing b/c just this morning i was wondering if you made it to denver yet. Anyways sounds like it was a pretty good visit. hope the new meds work good. and did you make like a follow up appointment with denver or are you just following through with UW?

Anonymous said...

Jess, will you be in chat tonight? I can update you on my Endo appt. You will be happy!!


Princess Jess said...

Yes I will be in chat!!

Megan, I think the doc's point was that I am being vastly UNDER treated by only having 3 rounds of IVs. My PFTs should not be as low as they are right now in relation to my amount of lung damage.

Cassie said...

The clinic makes SUCH a difference. I'll be interested in seeing if treating the asthma component differently raises improves your pfts at all. I'm so glad it went well. Yay!!

Patti said...

Wow Jess. Sounds like you had a great appointment with them! I think that you will get a lot more out of them than you will UW!

DarbSkull said...

Hey Jess, congrats! They really seem to know what they're doing in Denver. I'm glad you're getting such good care.

NoExcuses said...


Such great amazing info that you got while you were there. i agree 100% that it's suprising you've only had IV's 3 times....

Sounds like an amazing center. Denver has been next on my radar (after Stanford and Minnesota) and you have really inspired me.

I have a problem by my right breast too, and when I can, I get someone to do manual CPT. But a device to help me get in that area would be so great. WHAT A GREAT IDEA! Thanks so much for posting.

I'm so happy for you. Asthma component is huge, and it's amazing that they're targeting that too.

I really can't tell you enough how excited I am for you. What a great visit! HUGS!!!!

Princess Jess said...

Thanks everyone! I am SO glad that I did this. I have been so discouraged with UW and Denver was pretty much the complete opposite! I am looking forward to my next PFTs to see what the xopenex does.

Amy said...

Awesome news Jess I am SO excited for you!!!!!!!!!!!!

Kinda makes me wanna go to them even though I love my DR and center LOL

salty said...

Just wanted to add that Jess's experience wasn't that unusual for the Denver clinic. I seriously wish that more clinics would see how the Denver clinic works and use them as a standard for their own treatment of patients.

Jess, I am so glad that you finally got here and got some good treatment! I've been out of the CF loop (I do that a lot), so I am glad Darby pointed me to your post. Take care, and if you need any Denver advice I'd be glad to help you out!


Anonymous said...

yeah, Jess. I was thinking about you all day on Wednesday. I'm glad you have some new ideas and were appreciated! I'm there 6/24.