Guest Blogger - Jennifer

I am excited to introduce my next CF mommy blogger, Jennifer, who is 39 years old and mother of two children. She has a daughter who is five and a son who is 10 months old. You  have to check out her wonderful blog, Montessori Beginnings especially if you have children. She does great educational and fun projects with her daughter that you will absolutely want to try with your own kids. Since Kaylee is just a little younger than her son I love getting inspiration from her and the activities she does with him (he even cleans his own tray after eating- how amazing is that!!! Talk about inspiring).

Everyone that has CF seems to have a very different experience. Share a little bit about your CF story or how CF effects you.

I was diagnosed with CF sometime around 11 years old.  I was a super healthy kid but kept getting really bad sinus infections.  I was eventually sent for allergy tests and the technician suggested I get tested for CF.  My parents were shocked because back then the only images you would get of kids with CF (there were no adults!) were pretty dire.  Turns out that I did have CF but am pancreatic sufficient.  I think the diagnosis was mild CF.  My sister was later tested and she also has mild CF.  I suffered from bad sinuses and polyps and around 13 and had an operation to have them out as well as my adenoids.  The doctor ended up also taking out a whole sinus wall which was pretty traumatic at the time but since that day I have seriously never had another problem with my sinuses and the polyps never grew back.  Over the years I would have an average of about three chest infections a year which would be treated with oral antibiotics.  When first diagnosed I was doing physio every day but I found it didn’t make much difference so we stopped it.  Back then it was old school me lying on a stack of pillows and my mom pounding on me.

Jump ahead 20 years and CF had really just been a small annoyance in my life.  I would be going along like a normal person and then something would happen to remind me oh ya I do have CF.  I was a professional flute player for 11 years with a Symphony Orchestra and that did wonders to my lung function.  I was at 98% for all of that time.  Then I moved to England stopped playing the flute, got married and decided to have a baby.  That’s when things really changed with my CF.

Tell me a little bit about CF and your pregnancy. Was the pregnancy with your daughter similar to your pregnancy with your son?

I have to admit that with my first pregnancy I didn’t even really factor in my CF that much (young and stupid! Well not that young just stupid I guess!).  I knew that at some point I would have to take antibiotics but I thought I’ll just deal with that when it happens.  For both of my pregnancies I was super lucky in that I conceived on the first try.  Obviously I don’t have any issues with fertility.

With the first pregnancy I had been so healthy that I didn’t even have a CF clinic in England.  I ended up getting a chest infection really early on and the doctor gave me a super mild antibiotic.  Of course it did nothing and from then on I had really bad care.  I went from one doctor to another getting seriously no help.  One doctor actually told me to just breathe steam!! Another didn’t even believe I had CF!!! Finally after almost six months of feeling completely rotten I was able to connect with the CF clinic in London.  At my appointment I found out my lung function was at 63%!! I was shocked to say the least.  They called me a few days later with my lab results and I was growing not only my usual staph but also pseudomonas.  The doctor had booked me for admission the next day.  I stayed for two weeks and went on IV Ceftafatim.  They also convinced me to start pulmozyme.  After two weeks I was released but about three weeks later I was back.  The rest of my pregnancy was the same.  I could only stay healthy for about two to three weeks after the IVs. 

After the birth I decided to breast feed and continued to have chest issues.  When my daughter was four months old I was exhausted and decided to call it quits on the nursing and went on some super strong IVs.  That did the trick and I was back to my normal self until the next pregnancy.

 Although I tried to get super healthy before I got pregnant second time around I had about the exact same pregnancy troubles except for far better care.  I ended up being on oral antibiotics every month.  I could only go for two weeks before the infection would start to get out of control.  I guess my body just can’t handle pregnancy and fight off infection at the same time.  I was hell bent on breast feeding longer with my son and managed 7 months before I had to go on IV’s and I decided enough was enough.  My body needs a break now. 

                  

 Tell us a little bit about the birth of both you daughter and son. Did CF play a role in the delivery? How was recovery in terms of pain management when coughing and doing treatments?

For my first pregnancy I was scheduled for an induction 10 days before my due date because the doctors were concerned about the stress on my lungs. I ended up going into labour the day before which was really great.  The labour lasted 36 hours and I ended up having a recommended early epidural.  The doctors weren’t sure I would have enough energy to push when the time came if I had to go through all of the contractions.  When the time came to push I had a really difficult time and was passing out.  It ended up that my daughters shoulder was stuck so I had to have an episiotomy and they had to use the vacuum to pull her out.  She was fine but it was very traumatic for me and I ended up having to go to the ER to get stitches and fixed up.  I was on IVs all throughout the labour.  The recovery was long and painful as I had absolutely no bladder control and every time I coughed it was excruciating and I couldn’t hold anything in.  The coughing exacerbated things and it took much longer for me to heal. 

For my second pregnancy the doctors recommended another vaginal delivery as a C-section cuts through all the muscles you need to cough which would be much harder to recover from.  I was once again scheduled for induction 10 days early and was admitted a week before for IV’s to get into the best shape possible for the delivery.  My little guy once again decided to come two days before the induction but much, much faster.  Although I’d planned on having another epidural he came much too fast and they didn’t make it in time.  I had him naturally with no pain meds and boy was that insane!!  The pushing was super easy and he came out in two pushes.  I was so happy to know that I was able to give birth naturally and CF played no part at all in the delivery.  As there were no complications my recovery was so much easier and faster.  I continued my IV’s for the last few days as well as my treatments and then went home.  At that point my lungs were in great shape so coughing was not much of an issue.

Now that your daughter is a little older do you find that she asks questions about your CF and health? If so how do you explain your CF to your daughter?

Before I got pregnant with my son my daughter had absolutely no awareness of my CF.  She was four when I got pregnant and pretty soon it was obvious I was not my normal healthy self.  She was very aware of the coughing and I told her it was because of being pregnant. 

 Recently I was in the hospital for a week and she was very confused.  She asked me why I was in the hospital if I wasn’t having a baby.  I explained to her that I just got too sick and didn’t have enough energy to look after everyone so I needed to go to the hospital to take very strong medicine.  She knows that I do physio (my pipe) and that I take lots of pills but I really haven’t explained that I have CF yet and all that it entails.  I think it will be on a need to know basis at time goes on because the last thing a child needs is to have to worry about their mother.

If you could give advice to a CF women who is ttc or is pregnant what would you tell them?

I have found that every single person with CF has a different experience and this is no different in pregnancy.  I was very healthy before my pregnancies and had a terrible time during them yet other people who are more greatly affected by CF in general have great pregnancies.  So the only advice I would give would be to go with what is in your heart.  Being a mother is A LOT of work but I couldn’t imagine living my life without my children!  They are my heart.



To read the stories of ten other women with CF and their journeys with CF and pregnancy/motherhood please click here.

If you are a CF mother (though adoption, step children, surrogacy, fostering) or are CF and pregnant and want to share your story e-mail me at inhalinghopecf(at)gmail.com