Monday, May 30, 2011

Articles on Pregnancy and CF Outcomes

If you are a CFer that is interested in becoming a mommy or you are just curious as to how safe it is for a CFer to have a baby look below I have complied a few links on the topic.

A lengthy, but very informative article!

A good overview of the outcomes, complications, and things to consider in CF pregnancy

This is only the abstract, but it discusses pregnancy with lower FEV1

The overall tone of the articles is positive. In a planned pregnancy that is closely monitored by specialized doctors outcomes can be very positive for both baby and mom. The articles make it clear that pregnancy should be planned and great care should be taken before, during, and after pregnancy. Having a good BMI and the best possible lung function as well as a stable lung function (so even if you have lung function around 50% that would be better than someone who jumps from 70 to 30 to 50)will increase the likelihood of a positive outcome. Deciding to have a baby is scary for everyone and I believe it is much scarier for a person with a chronic illness. It is so important to educate yourself as much as possible so you can make an informed decision.

Sunday, May 29, 2011

I Feel Bad For The Kids

As I have mentioned in other posts I drink Ensure Plus to help maintain my weight. You can read about my experience and addiction to said supplement here.. So I get a monthly shipment to my doorstep each month through my insurance. It's quite lovely having it delivered because it comes in three giant boxes and although you might be surprised, the billion pound boxes would be too heavy to carry out of a pharmacy. I usually drag them in from the porch and wait until the hubby gets home to put them in the pantry. He is so helpful :)

Anyway, the last shipment showed up and in my box six of my Ensure had been replaced by supplemental drinks for kids. They weren't even made by the same company as Ensure and I am not sure how they were mistakenly put in my box. I figured instead of calling and making them come back out to bring me my 6 Ensures, I would just drink the kiddy drinks. I know they have less vitamins, protein, calories and whatnot because kids do not have the same nutritional requirements, but it is better than throwing them out right? So I cracked one open and decided to take a swig...Oh WOW! They are HORRIBLE. They were so disgusting that I had to run and grab a regular Ensure to quickly chase away the taste. Now the can says for oral or G-tube use so I can only hope people only put these in G-tubes because they are really nasty.

Even though Ensure has a stigma of an old person's drink I would much rather drink the senior citizens' drink than drink what they give those poor kids. Blah!

Saturday, May 28, 2011

A CFer's Spouse

I commend all CF spouses. It truly takes a special person to marry a CFer. Sure we CFers are exceptionally smart, hilariously funny, extremely attractive, charming, and strong (this is a proven fact, just ask any CFer), but we do have a few extra bags we carry around.

I have to say my husband is AMAZING!!!!! He is such a rock when I am scared or upset with my CF. He knows exactly how to calm my nerves, when to talk and when to just listen. When I have had horrible PICC line reactions due to sensitive skin, he learned how to clean and sterilize my PICC site and did it everyday so I didn't need to go to the outpatient every day. When I have a "cough attack" at night he rolls out of bed, gets my percussion clappers and will "beat" the plug out of me so we can both go back to sleep. This is the biggest life saver ever!!! Prior to marrying my husband when I would have nighttime cough attacks I would try to sleep though my stupid cough and was always too tired to get up and do a treatment. I was often successful in falling back to sleep in a restless sleep because my body is working so hard. This resulted in a non-stop cough that would last for hours. Now I get a "beating" and can go back to sleep and get a good nights rest!

My husband is so helpful around the house. I can't use bleach because it makes my lungs burn for days so he cleans the shower/tub/bathroom. Our bathroom is very small and doesn't have a fan so the bleach just hovers in the bathroom. He just makes sure that I don't use any cleaners that could negatively impact my lungs. Before this brag session goes on too long I just want to add that he also MAKES me eat when I am sick and don't feel like it. Trust me, I am stubborn and he is amazingly brave to try to make me do something. It is even more amazing that it works...sometimes.

I am sure my husband is not that different from other spouses of CFers. I think they have to be some of the most caring, loving, patient people in the world.

Getting the ball rolling

So I have an appointment with the high risk OBGYN that takes care of all the CFers at clinic that have had children. The appointment is June 17th. I am very excited to get a specialist who has lots of experience with CF pregnancy to discuss the best way to go about pregnancy for a CFer. I will update you after the appointment. For now I am trying to organize the million thoughts/concerns I have into coherent questions. I am so beyond excited and terrified at the same time.

Sunday, May 22, 2011

Great Strides

Great Strides this year was amazing!! The weather was perfect! There was a good turn out and they had great give aways. I had such a good time and had several friends come out to join and support me during the walk. I feel healthier this year than any other year that I have been to Great Strides so it felt great being able to support the development of drugs that are improving my life! I still don't know if I will ever see a cure in my lifetime, but I am 100% convinced that CFers lives will continue to get easier as new drugs seem to be be popping up all the time. In the coming up years there are the VX drugs that may be put on the market, but I am equally excited about inhaled Cipro and other meds that will be so beneficial. I know Cipro works for me and I would love to be able to take an inhaled version. I do not know what the outcome of the VX trials will be for Delta F508, but there is always hope that good things will come of the trials or they will at least help us develop other drugs. I have to say it took me 27 years to truly feel hopeful about the future of CF. I am usually a skeptic when it comes to new developments, but I feel that CFers will be given more and more options of care which will increase our likelihood of longer healthier lives.

Wednesday, May 18, 2011

A Healthy Spirit

Another yoga post...I am not obsessed I promise...

In yoga today we had to make an intention for ourselves today for one of the sets. For non-yoga people this is almost like a prayer. Of course, my intention came to mind instantly. The yogi was explaining how to put forth your intention and he used the example of good health. I thought it was funny because that intention never once crossed my mind. Of all people you would think I would want good health, but by not even thinking of my health I came to a realization.

After 13 years of knowing about my CF and a lifetime of coughing and health problems I have honestly accepted my shell. I call it that because the true me (spirit, soul, essence whatever you call it) is perfectly healthy and whole. I have realized that I will never be "healthy" as far as societies standard of health, but the true me (spirit) can be very healthy. By finding happiness in everyday I am given, being truly thankful and grateful for all I have in my life, by fulfilling my passions, and being a giving and loving person to others I can be perfectly healthy because I will have a healthy spirit and in the end that is all we have. I learned at a very young age that we can never control or choose the shell we were given, but we can choose the energy we give off in this life which in turn changes our very spirit. Although my body will continuously deteriorate my spirit can forever gain strength and beauty.

Tuesday, May 17, 2011

The Normal People

I had a friend the other day commenting about how much she hates allergies, but more than allergies she hates being dependent on allergy meds. She was telling me that she is trying SO hard to move to more natural ways of avoiding allergies such as nasal rinses. She currently takes one pill and a nasal spray to keep allergens at bay.

It was funny to me because it made me realize how nonCFers don't take a bucket load of pills/meds everyday. It is so ingrained in my life that I don't seem to really notice how many meds I take. In fact, I never think about it unless I get the shipment from CF Services or I have to go over my meds at the doctor.

Although I will always be on meds for the rest of my life, I could completely understand where she was coming from. I only go on meds that I feel the benefits outweigh the risks. For me meds keep me alive. meds > death. Easy answer, but for non-CFers I can see the decision being a little more complicated.

Saturday, May 14, 2011

Thanks...ugh this is awkward...

So I just got back from yoga. It was a killer today. I really thought I was going to die, well my arms at least. I was having a little bit of an off day. I think everyone that works out regularly have amazing days that they feel invincible while working out and other days that they feel weaker than normal. Today I was struggling through many of the sets. I feel fine health wise, but a little weak I guess.

Anyway, the real reason I wrote this post. Today after yoga a woman came up to me and said, "I know I can always look at you to figure out what I should be doing." Now I took this as a compliment, but it wasn't really a obvious compliment like, "wow, you are good at yoga." But I took this as "you are good enough at yoga that I can be sure you are doing it right." This is a compliment right? Well, I suck at getting compliments. I usually feel all awkward and say something stupid. This is mainly because I usually want to say something to discredit the compliment like, "I am so bad at sets that require straight legs" or something to that effect. Then I remember mid sentence that you should never discredit a compliment because it is somewhat rude and makes you look insecure. So then I usually stop half way through and try to figure out how to finish the sentence, but with a different ending and still have the sentence make sense. This is really hard so I act all weird and just say, "thanks" instead of finishing the sentence. I really need to learn to just say thank you and smile.

The moral of this post. I suck at getting compliments, I may act really awkward in front of you if you ever compliment me, and I am getting better at yoga! Yay to the last one.

Monday, May 9, 2011

Hard Work Pays Off

I am on cloud 9 right now! I just had clinic appointment and after increasing my medical routine from about 1 hour to almost 3 hours everyday my FEV1 lung function was...drum roll please... 54% I am seriously beyond words. I really never believed my FEV1 could get up that high after years of hovering around 49%. My FVC was in the 90s (can't remember what the exact number is at the moment) and my O2 was 98%. The most ironic part of it all is I called panicked because I was feeling so crummy and was worried I needed a PICC line. Turns out it is allergies and is not bothering my lungs. I really just want to cry. I feel like my dreams of being a mom someday feel so much more attainable.

The other amazing part is I am scheduled to visit the high risk OBGYN to discuss pregnancy and CF with her so that we can make an informed decision. I feel like it is all coming I just need to cross my fingers that i can get pregnant easily.

What a good day!

Friday, May 6, 2011


So I got all my labs back and am happy to say they look pretty good. All my vitamin levels are in the healthy range, but all of them are in the low healthy range. Shocking because I eat SUPER healthy, take my vitamins EVERY day, and drink two ensures which are full of vitamins too. I am just happy they were in the healthy range, but looks like I will be adding AQUADEKS to the mix. I don't mind taking pills at all, but those things smell SO bad they are hard to get down. My liver enzymes are a little funky so I may start a new med to get those in check. They said they will retest in about 3 months and if they are still high then I will need to add one more pill to my routine. Stupid CF, but overall a very good report.

Wednesday, May 4, 2011

Avoiding Spam

I decided to fly under the radar for a little while because I was getting a TON of spam from the same sight. Ugh. After I stopped posting and made everything private they stopped bugging me, but I have no idea if they will return the second I become public again. I guess it is just part of blogging, but it sure annoys me.

I am continuing to run and continuing yoga. There is a meditation in yoga that is SO hard, but I would recommend it to any CFer. Technically you are supposed to continue a breath style that makes it so you only breath twice per minute. Yikes. You breath in for 5 second (although he counts SO slow), breath out for 5 second and then hold your breath for 15-20 second. This is continued for several minutes. All I have to say is at first attempt I thought I was going to suffocate. Surprisingly, after a few minutes the discomfort went away and although I counted much faster that I was supposed to (hey give me a break I have minimal lung function, but I am working on it) I was able to follow the guidelines of 5 in, 5 out, 15 holding. Again my counting was nowhere near "one mississippi", but I was impressed at how much easier it became over time. I am hoping that if I continue this exercise I can increase my lung function. It is similar to holding your breath underwater and that improves lung function right??

I have been having some CF issues lately. First, I have such a bloated CF belly lately. No discomfort and anything irregular (if you get my drift), but I have a big old belly! I have started taking more acidophilus in hopes of clearing whatever issue is going on. Anyone have any other recommendations??

Second, my mucus is slowly getting darker and thicker. I am getting worried an infection is brewing and I am going to try to go to the Dr on Monday to see what is going on. I am thinking about getting a PICC line in the next few weeks. I figure one more really good clean out before TTC would be a good idea. I will keep you updated.