Hoping this isn't my new normal...

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liveitup

New member
Hi All - I've just turned 36. My first 35 + years were normal, very normal. I was an athlete, a mom, a college graduate, and a ton more....a fun person, etc. I had never had a bout of pneumonia or hospitalization. I never did breathing treatments,, except Tobi...sometimes. I had a baby at 35 and I have 2 adopted children. Since having my daughter, things have changed. I had my first bout with pneumonia at the end of the summer and again now. My first bout of pneumonia, I did my first round of iv antibiotics with a pic line. I had the choice of that or 2 weeks on Levequin. I chose the IV's because I was breastfeeding and my baby was only a few months old. I was told I could nurse on the iv's. This time I have chosen to (pump and dump) for the 2 weeks and do Levequin. My dr didn't thing the Levequin would work, but I do feel a ton better. I think it is working.

So, my question is...Is this going to be the new me? My energy is zapped, and I'm so scared that constant lung infections are my new way of life. I am praying not. I am grateful for the time I had being "normal." My kids are young, and my husband is amazing. I really just need to get healthy again and be able to take care of them the way they deserve! Thanks for my rant.
 
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ethan508

New member
Here is a post that is very similar to yours. http://forum.cysticfibrosis.com/threads/127915-First-Tune-Up

I've yet to have IVs, but my brother's have. One had his first two rounds durning a rough patch in his mid-twenties. That was 4 years ago and he has not needed another round of IVs since. My older brother (late thirties) just came out of the hospital. His previous trip was 14 years ago. Both of them got a lot more compliant with Vest and nebs after their latest hospital stays. It is now a little contest sometime when we get together to check each other's vest to see who has the most hours (I always win, most of the time). I've been considerably more compliant than them because my asthma motivates me to nebulize and do clearance more regularly. I believe that complaince has helped me stay out of the hospital (knock on wood).

So maybe your new normal will be have to be a little more complaince and more chronic use of Tobi or Cayston. But that doesn't mean you can't still be a great wife, awesome mom, and a fun person. Get feeling better.
 
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welshwitch

Guest
Wow, your story sounds identical to mine! (minus the babies). I just finished my first ever PICC line for pneumonia a couple weeks ago and it scared the living bejesus out of me. I am terrified that this will be the "new me" and that I won't be able to work a full time job, etc.

I just started seeing a therapist to work some of these fears out. I don't think they are warranted. A lot of it comes from the notion of being out of control. She is teaching me to base my thinking on facts and not fears and what-ifs. I tend to see my CF life as very binary: either I am totally fine and healthy, or I am dying.

It is very difficult to not live in denial from CF but I do think that for many years it worked for me because I had, as you say, a "normal, very normal" life. This was the first time I've felt like CF is catching up with me.

I don't think this is the new normal for you, but it may be the new normal of needing an IV once or twice a year. Please don't think it's over for you. It's a bump in the road for sure. How are your PFTs?

As a side note, I was devastated having to go on an IV, but I feel much better than before and they even eradicated the PA that was in my lungs since I was 12!

(Always thinking of the silver lining…)

If it becomes too much, I definitely recommend talking to a counselor or a therapist about some of these fears. It's just too overwhelming to deal with on your own.

Take care.
 
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welshwitch

Guest
Also, you say your energy is zapped. Isn't that normal for new moms, not to mention a mom of 3!
 
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static

New member
welshwitch said:
If it becomes too much, I definitely recommend talking to a counselor or a therapist about some of these fears. It's just too overwhelming to deal with on your own.
Click to expand...

I definitely agree with this. CF and mental health are so very much connected, sometimes I feel it doesn't get enough credit. Thankful for forums like these that help us connect with each other and sort out some of our thoughts.

Reading your post I was actually a bit jealous that you managed to be healthy for so long doing so little, but it would be hypocritical for me to judge (what good does judgement do anyways, it just makes one person feel lousy while the condition of the one making the judgement stays the same).

In my experience, what motivated me was getting sick then realizing all the things that gave my life purpose to make me want to stay well. I added therapies, subtracted distractors, did research on new treatments, exc. More compliance=less sick. Albeit it isn't the best way to learn, and I wish I listened to the countless people telling me to do x,y, and z more when I was younger, but when you get to that point all that matters is asking "is my purpose (kids, husband, job, friends, exc.) still worth fighting for?" As long as the answer is still yes, then you are in good shape.

I also agree with all those who wrote to live in the now and not worry so much about the "what ifs".
 
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liveitup

New member
Thank you all so much for your replies. I was asked about my pft's - they were about 108% until after I had my baby. They went down to 84% when I had my first pneumonia which was a couple months after she was born. I have read that having a baby will affect your pft's temporarily. The only thing I did for maintenance during my pregnancy was hypertonic saline! I was afraid to do anything else - I know now that I should have been more aggressive, but live and learn! I do think counseling will help me.. I hadn't thought of that for some reason!

I do often feel guilty about how freely I lived my first 35 years. CF was more of a chip on my back that I carried around. I am becoming very aggressive and very compliant!!! I may even get a vest :). I have an accapella now...It's ok.

I am also grateful that the Levequin seems to be kicking this bugs butt!!! I have pseudo. , but so far it is very sensitive to everything. I know that won't last forever.

Also, I am DDF508...
 
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liveitup

New member
Also, OMGOSH, Welchwitch. I haven't slept through the night in over a year! I had insomnia my entire 3rd trimester. I think I know why now - My baby is 9 months old and still gets up 2 times every night like clockwork. She won't go back to sleep until she is changed and nursed or a bottle!
 
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TreasureGoddess

Member
welshwitch, I'm so very happy to see your reply here! Look at you!! Not only did you come through your scare like a total CHAMP but you're already encouraging others to see that a dip in the health isn't necessarily "the beginning of the end." YOU ROCK!

liveitup, I agree with the others. Being a mom of a little one is ALWAYS hard, especially with the extra things you have to deal with due to CF. You also ROCK and hang in there. Your health will bounce back and you need to make sure to make some time for NAPS and some YOU TIME (ha, I know, that's crazy as a mom of little ones). FYI lung clearance isn't just medicines, so you can always do a few huff coughs, breathing exercises, plain old exercise to breathe deeply and get things moving as you're bouncing a little one on your hip, as you push the kiddo's in the swings, etc. Good luck and make sure not to push yourself too hard past exhaustion, ask for help from family & friends to set up a way for you to get a bit more rest.
 
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welshwitch

Guest
Ha ha thanks TreasureGoddess! I am learning -- one day at a time!

84% is pretty good for a new mom who is getting over pneumonia! I remember you said you were a runner. How is that going? I feel like running is a huge part of my treatment strategy.
 
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jamest

Guest
I experienced something similar. I was 30 or 31 and had a few flare ups before, but generally I did little clearance and relied on Tobi. Then I started getting sick all the time, energy level way down, fevers constantly. I ramped up clearance but that didn't help.

Turned out it was a sinus infection, and surgery mitigated some of those effects. However, I still felt poorly until I went on Cayston. Cayston was night and day, I felt like an entirely different person, I had a future again.

So! If you are feeling like your condition is degrading, looks for new meds and treatments to help. I resisted new meds for so long, for a reason I'm not quite sure of, I definitely could have been much better off had I started cycling tobi and cayston years ago.
 
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Cat in the Sunlight

Guest
The question of "new normal" is one I have been asking as each decade passes. I am in my early 60's now, diagnosed at birth, and I've always had serious respiratory and digestive issues. When I was born, and through much of my life, there were few avenues for treatment. I started exercising at age 5 and have never stopped. My confidence in my longevity falters from time to time, but, while I have lost ground as I've aged, I am healthier than many of my contemporaries who don't have CF. I have recently added Yoga to my list of ways to keep myself healthy. The more I do to take care of myself, the easier it is to believe that I shall continue to thrive. My fev1 is in the 40's, but I still enjoy a full life. I have never wanted a lung transplant. More important, the Fev1 is not indicative of my level of performance. I no longer work, but I am up before the sun, walk my dog for over a mile and then exercise for an hour. Each day is full. There is something that I have learned to remind myself, whenever I ask the "new normal" question. Everyone experiences a decline of some sort with age. My life at 60+ is not the life I had in my 30's, 40's or 50's. Having CF and living a full life takes courage, determination and willingness to do the hard work. Those qualities don't diminish with age. Keep that in mind whenever the inevitable, and fully understandable, doubt creeps in. It's what I do! I wish you all well!
 
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believingjesus

Banned
Cat in the Sunlight - I liked reading your post. You are an example of why we shouldn't ask "what if?" as you are living a full life and enjoying where you are in life and you know how fortunate you are. We should all do that at any age.
 
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MichaelL

New member
I was actually diagnosed at 34, so I hadn't done any treatments up until then. At the time, my lung function was lower than yours is now. I started the treatments, but continued to live a pretty normal life for several more years. I had my first tune up at age 36, but didn't have another one until age 41. Most of my problems are due to my mycobacterium abscessus infection. If I hadn't of picked up this infection, I think my lung function would be quite a bit better than it is now.

CF affects everyone differently based on mutations, treatments and so many other things. This makes it difficult to know what's in store. However, given your history I would assume you have quite a few more years of relatively good health ahead of you.

Good luck -- I hope you can avoid another round of IVs for quite a while.
 
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