Thursday, October 13, 2011

Clinic Day

Happy Thursday everyone!

First, I want to thank those of you who took the time to comment on my last blog about the possible reasons for my heart problem the other night.  It was nice to see suggestions/comments about it, and it made me feel a lot less alone in the situation. I greatly appreciate it.

Now, to talk about my day up at the clinic.  Today has been one of those days where the rain takes turns between coming down in buckets and lightly misting over everything.  During our time driving up to Chicago and back, it was thankfully mostly misting with only one incidence of bucket-pouring rain.  In addition, the traffic was horrendous. We live about an hour southwest of Chicago, but we spent two hours in the car this morning. Neither rain nor traffic make me very happy when driving, so I was stressed on the way up.  Thankfully, we made it there safely and my doctor was still able to see me.

I went in and immediately was weighed in at 115.6 (two months ago on their scale, I was 113.1, so I was very proud of this weight).  Next, my PFTs were done by someone other than my normal respiratory therapist. That's always a bite, because Patty makes me blow harder and coaches me more than the other girl did this morning. Regardless, my PFTs were 83% which is 2% up from where they were and right around my baseline. This made me really happy, but I still want to get them higher.

Then my nurse practitioner, Penny, came in (I did tell her you said hi, Colleen! She says "hi" back! :) ) to see me.  I love Penny. She is amazing at her job and I am so grateful that she is at my CF center.  She told me not to worry about the heart situation unless it happens again, but I think we are both leaning along the lines that it was related to the Levaquin.  If it happens again, I'm to go right to the emergency room and let them capture it on an EKG.  At least we have a plan, which makes me much happier about the situation.

I also asked her about the prevalence of hemoptysis and pregnancy. She said that being pregnant does not make you have an incidence with hemoptysis, which was very comforting. She said that if you have had hemoptysis in the past, then you are more likely to have it again, but not necessarily at the same time. It made me feel much better about getting pregnant.  Along those lines, she also referred me to a high-risk OB whom she knows really well, so I feel 100% taken care of now.  I have an appointment coming up with the high-risk OB, and then we can figure out the TTC part of our life a little more thoroughly.

We did make two changes right now for my treatment plan.  The first change is that I will be doing hypertonic saline twice a day, instead of once. I have had better luck coughing up sputum with the hypersal, so hopefully this will help improve my lung function.  The second change we made was regarding my insulin. I shared with Penny how frustrated I was with CFRD and she went on to explain how different CFRD and how each individual case is different as well.  So, when I explained my 3 hour highs after dinner (even with insulin), we decided to try taking my insulin after dinner rather than before dinner. This should hopefully cover the 3 hour spike that I've been having.

Overall, my CF appointment went amazingly well, and I'm so blessed that my lung function is back up to 83%.  I also managed to get a flu shot today, see my ENT, and got my yearly lab work done (6 vials of blood, yay)! My ENT said that my sinuses show that I had a sinus infection, but they look like they are doing better. That's definitely a good thing!  I'm so blessed, and so grateful for my positive appointments today. I now can't wait to see the high-risk OB and see what he has to say!


  1. Great news! Thanks for the update.

  2. Glad it all went so well! So is the levaquin working then? Are you going to be able to avoid IVs this time? (Hooray!) You're lucky to have the high-risk OB - basically nobody in my whole STATE knows anything about CF, so if/when I get pregnant it will definitely be interesting to see how we're going to get it all taken care of!

  3. So glad bleeding and pregnancy aren't related because after the cf mummy boards and Nicole it has me a little paranoid. Also so glad that your heart thing isn't a concern unless it happens again AND good job of your PFTs. Overall a very happy post besides the traffic/rain!

  4. Thank you ladies for your responses!
    Cindy - I can't imagine how frustrating that must be for you. I'm so blessed to be around Chicago because of all the teaching schools it is home to. There's a specialist for everything right around the corner. Do you have a regular CF clinic at least? I'm off the levaquin and it seems my sinus infection/junky cough is doing better. I'm able to stay off IVs for the moment, which is good :)

    Inhaling Hope - I agree with you. It had left me more than little nervous which is why I had to ask her. She said that hemoptysis is scary because it comes and goes so suddenly, but there is no connection to pregnancy and incidences of it. I'm also glad about the heart, that's for sure. I see the high-risk OB next week and he may even want an echo-cardiogram done, which will just confirm that everything is ok. Thank you about the PFTs..I'm really blessed but I need to keep them up there. Three treatments a day and exercise..ugh! :) Worth it for those numbers though.

  5. Megan, nope..... my CF clinic is a 4 hour drive away! It is such a pain especially when I end up having to go down frequently. I went down last week (the 3rd) and I am going to have to go back on the 24th. Ugh! I'm so sick of that drive. I grew up in Durham NC, which has TWO CF centers within 45 minutes, so it's definitely a change! We are hoping to move in the next year or two though.

  6. Thank you so much for asking your doctor about hemoptysis, I was in the same boat as you two (as usual!) and have been having a hard time moving on to TTC.

    I just started doing hypotonic saline twice a day and I love it. I have to admit it took me almost two years of using it to finally stick to the twice a day schedule and I can really notice a different.

    Have you had a chance to start Ensure Plus? I was down to 108lbs last March and am not at 123 lbs and I have Ensure Plus and a 2500 high fat/calorie diet to thank. Let me know if you ever need advice on how to gain weight....I am an expert!

    Great news about the appt!!

  7. Cindy, how terrible. A four hour drive is ridiculous. I get frustrated with my hour to 2 hour drive! I see multiple doctors up there too, so it's irritating when I have to make multiple trips. For example, I saw CF docs today, High-risk OB next week, and Endocrin the week after that....lots of driving, lots of money. I wish they could coordinate days better. Hopefully, if you can make it closer the clinic when you move, it will be less stressful.

    JWags - I'm so glad that this was able to help you. I had such a hard time. I didn't even chart for three weeks because I didn't know what I was wanting to do and had no motivation to keep trying, but I'm back into it all now. I definitely needed the reassurance of my docs. I can't wait to see the difference it makes for me. The fact that I ran a mile in 17 minutes (I know, not very fast, but fast for me regardless) and my lungs still felt great, made me realize I need to be using it more. I have yet to start on the Ensure. I think once I get my sugars under better control, I'll start throwing that in the mix as well. Congratulations on the weight gain!! That is AMAZING!! :) I will ask what foods you typically resort to for high-calorie foods?

  8. Hi Megan! I hope your appt goes well this week with the high risk OBGYN....that is so exciting. In case she mentions something about needing to gain weight, here is a list of fatty delicious foods to help you!

    1. Little Debbie Snack Cakes-there is usually a different design for each holiday, they are sugary and yummy and about 300 calories for two little cakes.

    2. Whole Milk Chocolate Milk-tastes way better than lowfat choc. milk. All your friends will be jealous....make sure to keep your husband away, mine has gained weight from it :)

    3. Honey Roasted Peanuts mixed with M&Ms and pretzels-a must for snack time for a CFer.

    4. Stouffers Cheese Bake frozen dinner-I always feel weird when I buy frozen dinners but this one is so delicious and fatty that I can no longer feel weird because it has actually helped me look great!

    5. Ensure Plus-Vanilla and Strawberry are my favorite.

    6. String Cheese-I live in WI so there is always plenty of cheese to go around.

    7. Nature Valley-Cashew Granola Bar

    I hope you find my list tastey!

  9. Thank you so much for all the food suggestions. I eat string cheese like it's never going to be stocked in stores again. It's been a long time since I've had chocolate milk, but it sounds amazing. I may have to pick some up!! I also never eat Little Debbie snacks, so it looks like that may add to my list. I have never heard of Stouffer's Cheese bake...I'm going to look for that at the store (it sounds amazingly delicious..I love cheese)!! Thank you for the suggestions!!


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