31.5 Weeks and a Few Changes

As I talked about in my previous post, I had CF clinic and my high-risk OB appointment this past Thursday. I didn't expect a great lung function report, but overall I expected unchanged news.

The first appointment of the day was my high-risk OB. It was pouring Thursday morning, and it took us almost three hours to reach clinic because of rush-hour traffic and the horrendous weather. I ended up being 15 minutes late, and I was pretty stressed about it; I hate not being places on time. My doctors weren't concerned at all, and they got me in very quickly. I had my weight checked and my blood pressure checked. My weight was okay, but my blood pressure was high (well of course, I was just nervous and rushing around trying to get to my appointment). Thankfully there was no protein in my urine so they weren't concerned.

During this time, I explained that my Braxton Hicks contractions were increasing, and I really noticed them if I was on my feet more than 15 minutes at a time. I also was having pretty rough cramping that woke me up throughout the night the day before the appointment. These two things led them to want to check me to make sure everything was okay.

Well, the good news is that my cervix is still closed, but it is already softening so that led me to have an ultrasound and NST (non-stress test) for the baby. She's doing great, but I've been told to stay off my feet as much as possible. I have another appointment this coming Thursday to see if there have been any changes.

I was pretty nervous about all of this because I never expected to hear it, but I am so glad that baby girl is doing well. I'll stay off my feet for the next 6.5 weeks if I have to just as long as she is born safe and sound.

In between my OB and my testing, I went up to my CF clinic and thankfully my PFTs are unchanged!! They looked great, and I sounded great so my doctors were really happy with that. Last CF appointment before her arrival is next month! It has really flown by.

So, basically I'm taking it EXTREMELY easy (at least until I'm told otherwise). I really do wish I could go for a long walk though because my lungs love it, and the weather is so beautiful! That's okay though..soon enough I'll be walking with our little girl :)

Thankful Thoughts

It's November 8, and I have been less than committed to my "November Blessings" this year. Since I haven't posted in a week or so, I figured it was time to update what I'm thankful for today.

Today, I am thankful for the right to vote, which I exercised on Tuesday. I realize how lucky we are to live in a country where we can vote (regardless of gender, race, or religion), our voice is heard, and we are given the opportunity to vote in new candidates over time. I believe I am so blessed to live in this country.

I am also thankful for access to great healthcare. I have had a variety of doctor appointments in the last two months or so, and I am so blessed that I have the financial ability to be at one of the best hospitals! My CF care team is phenomenal, and all of my other doctors are great too. I can't even begin to describe how different my life would be if it wasn't for this standard of health care.

And finally today, I am thankful for my insulin pump. I recently decided to go on the pump so that I don't have to inject myself 5+ times in a day, and so that I would have better control over my sugars. This transition really deserves its own post, and I will try to do that somewhat soon. I've been on it for over a month now, and I love it. My sugars are in GREAT control (80s in the morning, under 120 two hours after eating..wonderful numbers), and I only have to inject myself once every three days to change my site. It has made my life a lot easier, and for the first time (in a long time) I forget once in a while that I have diabetes. And that, my friends, is definitely something to be thankful for.

I have another CF appointment today. Last time, my lung function had dropped from 85 to 78. I never see numbers that low, and it terrified me. Hopefully this time they are back up. My respiratory therapist, who is amazing, will be there this time. She wasn't at the clinic last appointment, and my doctors said that they will wait to see what my numbers are when she is back. SO, I'm hoping my FEV1 will be at least 83! 

Confession #3

Confession #3: I am NOT consistent in many things in my life...

As you can tell from my lack of posting recently, consistency is not my forte. I admit this, and I struggle with it on a regular basis. Trying to get a routine down is very difficult for me, and truthfully the fact that my treatments are done every single day is pretty impressive!  I have tried getting into routines, and I have failed miserably.  Really, any advice or tips I will happily take!!

So what have I been up to? Sleeping a lot. It's about all I do right now. I think it is due in part to the changing of the seasons. I'm feeling the need to hibernate, and I've been extremely cold recently. I also have been spending time doing things around the house, reading, and watching a lot of mindless TV. Yes, I've been lazy!!

Tomorrow I don't get to be lazy though. I have my CF appointment, and I just hope that my lung function is still good. I haven't been exercising as much recently (shame on me), and I really need to get back into it. I just hope that my lack of effort doesn't show too terribly on my PFTs. 

8/23/2012 Clinic Update

I don't know many of us CFers who get excited for clinic days. I know they are always a source of anxiety for me, as I worry that my lung function has decreased or I've cultured some new bacteria. That, however, is the extent of my worry because my CF team is truly incredible. They are always sensitive about my health, cautious about antibiotics, and hopeful for my future. In all honesty, they make it much easier to go through clinic days.

I was extremely worried about this clinic day because I have been fighting a rough upper respiratory infection for weeks now. It is getting better, but I was worried about what damage had already been done in the past few weeks.

Thankfully, when my doctors listened to me there were no crackles, and only a slight diminishing in my upper right airways (which is where the infection has seemed to reside).  As for my PFTs, my FVC was up to 156%, and my FEV1 was at 85% which is right where I was before. I was stunned at the numbers. I really expected to be down, but I definitely have an angel watching over me.

With these numbers, it means I continue to up my treatments, increase my exercise, and up my sleep per day to try and continue to kick this infection by myself. It also means that the doctors are 100% behind my frozen embryo transfer!

The other, astonishing news, was my culture results. As of my last culture, the aspergillus that I was culturing has gone, and my P.A. which I have cultured for many many years was gone as well!!! The Cayston is working! Despite the P.A. results, I'm staying on Cayston until we have a few cultures where it's negative for P.A. I'm actually starting Cayston a week early as well to try and help combat my infection so that the P.A. can't take a hold and grow while I'm already sick.

The one thing I have to work on is my weight - I still need to gain about 3 pounds. I'm working on it!! Overall, fantastic appointment, and I just know I am blessed. Truly very blessed. 

As summer winds down

I haven't had much time to post recently as I have been helping David get his classroom ready for the last week or so. This time of summer is always difficult to find time because David and I cling to our last few days of togetherness before he goes back to work.

We truly live for summers. As a teacher, my husband has an insane amount of work. I should mention that he is a perfectionist which really impacts the amount of work he actually has. Due to his job, once summer ends we get very few hours together a day. This is why, the last week before school starts, I'm pretty hard to get in contact with.

This school year brings changes upon changes. David has two new administrators and a whole new curriculum. He also is trying to help his students find the passion in reading, and we spent dozens of hours working on setting up his classroom library. The kids will be free-reading each day, and they must meet different genre requirements (for example: they must read 4 historical fiction books, 4 realistic fiction, 4 traditional lit., 4 poetry books, etc.).  The goal is that at the end of the year, the students will have read 40 books. The idea was taken from a teacher in Texas, Donalyn Miller, who does this with her students. She has written an amazing book about it, and we feel the research she includes proves that children need more time to read in class. So..a classroom library it is!! Many hours and hundreds of dollars later, we have over 300 award winning and popular books for the kids to enjoy! We're pretty proud of this library, and it will hopefully get the kids motivated!

David's library. The bins are all labeled by genre so the kids can easily sort them. 

So now that David is back to school, my blogging will probably pick up again. I'm getting ready to start the process for a frozen embryo transfer so that will keep me busy over the next few months. Also, I have CF clinic tomorrow, and I've been fighting bronchitis for awhile now so I'm pretty sure we'll be discussing antibiotics at this appointment. I'm just praying that my PFTs haven't dropped too much. 

CF Clinic and First Ultrasound

Wow! What a couple of days it's been!  I have decided that I truly hate driving in Chicago rush-hour traffic! I've also realized that each ultrasound appointment requires me to drive in Chicago rush-hour traffic so I'm not away from it by any means.

I'll start of with Today's appointment which was CF clinic. We began our day by finding out that our normal route was going to be inaccessible as the road had buckled and was creating a traffic nightmare, to say the least! The travel times were over two hours from about 20 miles north of us so we decided we'd try a new and different route. I'm so glad we did! We found an alternate route that got us into the city in just under an hour (an amazing time given our location and that it was 7 AM in the morning)!

As far as the actual appointment goes: AWESOME!! My FEV1 was 86% and my FVC was 136% which is awesome, and I was NOT expecting it to be that high. I was so happy, and I have been thanking God many times since getting this news. I was concerned that it would be down thus cancelling my IVF cycle in order to go on antibiotics. Instead, I got a good report and was told they were all hoping for a positive pregnancy test for me! Couldn't ask for better! :)

Now for my ultrasound report: AWESOME as well!! At this point in the IVF cycle, the follicles should be really small, there should be no cysts, the uterine lining should be really thin, and the estrogen levels should be less than 100. My follicles were tiny with no cysts, I have a very thin uterine lining, and my estrogen level was 24.  I start stimulating meds on Friday!!! I will be injecting both follistim and menopur. The menopur needs to be mixed, and I'll be heading over to my dad's house to make sure I do it correctly (he's an E.R. nurse so he's pretty good at that stuff)!

I'm not sure how I'll feel during the stim meds, but I imagine to feel bloated and a little uncomfortable. I'll be sure to let you know, though! :) Next ultrasound appointment is Wednesday so we will see how everything looks then!

My Scope and My Sister's Appointment

Wow. What a BIG week for my family.

Last Thursday, I attended my CF clinic while my sister met with her surgical oncologist. It was a stressful day, to say the least. I was a nervous wreck as I did my PFTs (Pulmonary Function Test), anxious to hear what the surgeon was telling my sister at a nearby hospital in Chicago.  I was anxious that my lung function would go down from the stress of the last few months, I was anxious about getting the approval to go ahead with infertility treatments next month, and I was especially anxious about whether or not my sister was all set for surgery to remove the cancer. I also had nothing to eat that day as it was the day before my colonoscopy and I was only allowed to have clear liquids.

For starters, my body is stronger than I previously thought. Even with the stress of my sister's diagnosis, my father-in-law's passing, and my great-aunt's passing, my lung function stayed stable. I was 85% this time (86% last time, which is considered unchanged).  I was STUNNED. I never expected to be this high, but I was grateful. My oxygen was also at 100% on room air, and I sounded nice and clear. In addition, my doctor didn't even hesitate when she told us to go ahead and start infertility treatments next month. Needless to say, it was a good appointment. My mom and I left thinking, one down, one to go.

We headed back home to change really quickly and then headed to the local hospital. I was to be admitted for my scope prep due to the fact that I have a prolonged QT interval, and the doctors felt it would be safer for me to be on a heart monitor while doing the prep. I wasn't thrilled about being admitted, but I went along with it. This was my first time overnight in a hospital since I was 17.

I checked myself in, and I prepared for a long night of prep.  Basically, I had to drink two 16 oz glasses of a strong laxative, and then follow that with 64 ounces of water. The prep tastes horrible, and the laxative effects aren't fun, but it's well worth it to get checked out when you have a family history of colon cancer. The first half of the prep didn't go so well for me as I didn't take anti-nausea meds prior to starting it. Once the nausea meds were on board, I was fine to finish it. The second half of the prep went just fine since we let the meds kick in an hour before starting the prep.  I didn't feel queasy once, and I was able to keep it all down without an issue.

The scope showed that I had a polyp which was removed during the procedure.  I wonder how long it would have been inside of me if it hadn't been for my sister's diagnosis. I had no pain, no issues, and no reason for a scope aside from my family history.  The problem with polyps is that they have a tendency to become cancerous. This is why they are instantly removed when they are found during a colonoscopy.  I'm so grateful that it was found and removed!! Due to the finding of the polyp, I will have to repeat my scope in three years to make sure I am still doing ok.

As for my sister's news. . . .we actually found out about my sister's appointment about four hours into my hospital stay. The surgeon said that he wants to go ahead with surgery in early June!! We're so happy that they are setting up for surgery and will remove the tumor from the colon!  The plan is to cut out half of the liver, and remove a good portion of the colon. It will be a big surgery, but my sister is a fighter and she will come through it with flying colors! The other half of my sister's liver is in FANTASTIC condition, which is great because it gives it a higher chance of regenerating once the surgery is complete. The only problem is that in order to prepare for surgery, my sister has to stop chemo. The surgeon said that they will do a scope and a PET scan the day of surgery, but if anything has spread the surgery will be cancelled and she will have to go back to chemo. He called this a "leap of faith." As we await the beginning of June, please keep my sister in your prayers and thoughts. We're praying that the cancer does not spread anywhere else so that the operation can take place!

A Few Big Days

Thursday is a BIG day. 

Tomorrow, my sister and I both have doctors appointments. My sister is heading to see a surgical oncologist to talk about whether or not chemo has shrunk the tumors enough to attempt surgery.  I am so excited and thankful to God to be able to share with you all that my sister's largest tumors have shrunk by about 20% following 4 chemo treatments!! We are stunned and excited, and we can't wait to hear what the surgical oncologist says this Thursday. Hopefully, it will be the time to do surgery and get it all out of her body. Then, we can continue with chemo and get her cancer in remission! That's the goal, and I will be sure to update on our progress!

A picture of me and my sister (maid of honor at  my wedding).

Tomorrow, I also see my CF team. Normally, I don't consider this a huge appointment.  It's normal; it's routine; it's typical. From the last appointment to now however, my body has gone through a tremendous amount of unusual stress. While I didn't get physically ill from the stress, I am anxious to see how it impacted my lung function. I'm hoping that my lung function is still in the 80s, but I'm concerned that it won't be. We'll just have to see. I also am curious/anxious because (in my own opinion) my lung function determines whether or not we go forward with infertility treatments or not this coming month. If it's down a decent amount, I will be holding off on the treatments, but if it's stable or up then we are good to go!

After I get home Thursday afternoon, I begin my prep for my colonscopy as well. I'm not looking forward to the prep, but it's necessary and I'll be happy to have the scope out of the way by Friday evening. I'll blog about it and make sure to take pictures as well.  So, as I go into the day I'm hoping for good news all the way around! I'll keep you updated :)

Clinic Update: February 2012

Yesterday was a long but good day.  I had the earliest appointment I've ever had at U of C yesterday.  I ended up having to leave my house by 6 AM to make it to an 8:30 liver ultrasound. Overall, the morning commute wasn't nearly as bad as we expected. We made it up there by 7:45 and I even got in a little early for my ultrasound! This was great because in order to have my liver ultrasound, I was required to fast for 8 hours, which in turn made me quite crabby.

After the ultrasound was finished, my mom (who is amazing and comes with me to appointments when I need her) and I went to go grab some breakfast - I had an awesome Denver omelet which helped fill me up and make me a more tolerable person to be around.  Following breakfast, we headed up to my CF clinic.  My original appointment time was 11:30, but thankfully my clinic got me in much earlier! I ended up getting into a room at 10 AM.  I ended up seeing my respiratory therapist, my nurse practitioner, and my CF doc so it was (as always) a long appointment.  Here's an overview of what was said/done:

Lung Function: My FEV1 was surprisingly unchanged since the previous appointment.  Ok, technically it was down 1% but that's just a normal fluctuation.  Last time it was at 2.74 L which equates to 87%.  This time it was 2.72 L which equates to 86%. I'm definitely thrilled about this result.  Due to the few instances of hemoptysis as well as stopping the hypertonic saline 7% (due to hemoptysis), I expected it to be down.  I will gladly take that number, however!  My FVC was down a bit.  It was (not sure about numbers on this one) 140ish% last time, and I was down to 4.21 or 107% this time.  I'm not considerably concerned about this change.  A surprising one was my lower airways, my FEF 25-75% number.  Last time it was at 13% but this time it was up to 39%!!  Overall, great numbers.  Also, my docs listened and couldn't hear a single crackle in my chest.  Very happy about my lung function this time around.

Weight: Officially up to 119.6!! The docs are very happy, and I do believe this may have something to do with my increased lung function overall.  I'm putting, and keeping, weight on which in turn makes me healthier.

Changes to my Current Routine: Due to increased heartburn, I'm going to be started on Prilosec.  This should help with the heartburn as well as help my enzymes work better, so it sounds like a great plan to me!  I'm also going to start on Advair which should (hopefully) help to open up my lower airways and help increase my exercise tolerance, since I have stress-induced asthma.  Basically, Advair is a long-lasting bronchodilator with a bit of a steroid in it. I'm excited to see how it works! That said, my doctor wants me to wait until I start my next menstrual cycle since Advair is a category C for pregnancy drugs. She said that if I don't have to be on it for pregnancy, she would prefer it that way. In addition to this, I'm going off of 7% hyper-sal for good, and I'm going to start mixing my own 3%.  If I continue to have hemoptysis with this concentration, I will be put on Vitamin K but continue the hyper-sal.  My doctors really want me to get the benefit from hyper-sal, as I have never breathed better than when I was on it.

Liver: We should find out about my liver enzymes (previously elevated) and my liver ultrasound in a few days.  The tech said that my liver looked really good, but I have to wait to hear from the doctor to be sure.

Overall, fantastic news! This was another clinic visit that made me realize just how blessed I am. I work hard to keep myself healthy, but I could be working even harder - EVERYDAY exercise, that's my goal!

CF Appointment

VERY short post!

I had my CF appointment today, and as I have been feeling quite junky with my lungs I was figuring my PFTs would be down from last time.

Well..MERRY CHRISTMAS TO ME! :)

My PFTs have stayed stable at 82-84% for at least a year and a half, but I'm pretty sure it's been closer to two years.  Today...they were 87%!!!!!!!!!!!!!!!!!!!

I'm on cloud nine today! Best present in the world!

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!