The Last Few Years

It feels funny to write that title. I can hardly believe that it has been years since I have been on my blog. This used to be a refuge for me, and I took comfort in the ability to write about my illness, infertility, and life in general. Then, my daughter was born, my sister passed away, and life became hard, busy, and sometimes quite depressing. 

Over the last few years, I've struggled with such varying feelings. I have felt the very lows of depression and anxiety where I have been unable to leave the house, and I have felt the immense highs that occur as you watch your beautiful child accomplish something new or give you the biggest hug as she tells you she loves you more than anything. In truth, even with all of the high moments my daughter has given me, the last few years have been downright hard. 

My sister lost her battle with cancer at the end of December in 2014. It has now been three years since I last held her hand, hugged her, or heard her contagious laughter as it filled a room. The first two years, I felt like a zombie moving through the motions as I learned how to somehow cope with her absence in my life. Over the last few months, I've finally just now begun to really feel like my "old self" again. I still have my days when I feel the sadness of loss overwhelm me, but they are few and farther between than they have been, and while a part of me feels angry that I'm allowing myself to feel happiness, I also know that my sister wouldn't want me to live my life sad. So I've been pushing forward, and the one thing that has kept me grounded is my beautiful little girl.

My daughter, Sydney, is now almost 5. She'll turn 5 next month, and she is beyond excited to celebrate her birthday with a My Little Pony theme. She is so intelligent, one of the kindest kids I've ever met, and so very sweet to others. She's also quite smart, and has a great sense of humor. I know I'm biased, but she's pretty darn amazing. She's currently in her second year of preschool, and her teachers have said that they will be so sad to see her go to kindergarten next year. She's ready though. She knows all her letters, and she is even reading and writing some words. I'm amazed by how much she has learned. She is the light of my life, and I'm so blessed to have her.

Two years ago now, we were actually pregnant with a second baby. We were both so excited and we couldn't wait to have a sibling for our little girl, but sadly I had a miscarriage just shy of twelve weeks. It was another blow that led me into a worsened state of depression and anxiety as I learned how to accept the loss of our baby and move on again. We had everything set up to try and carry another child yet again, but sadly, in November of last year I wound up hospitalized, and it changed the game for us. 

Last year, Sydney brought home every germ imaginable as she triumphed through her first year of preschool. Everything she brought home, I managed to catch, and before I knew it, I was really struggling. My CF team and I made the decision together that it was time to call in reinforcements and I received my first hospitalization in 12 years and my first round of IV antibiotics in 8 years. It was hard for me to mentally accept, but I knew I was doing what was best for my health.

During my hospitalization, I wound up doing 3 different IV meds. At first it was Merepenum, Tobi, and Vanco. I then ended up culturing C. Diff. while in hospital, and the IV meds were changed from Merepenum to Zosyn. It did help my lung function and my energy as these drugs kicked in and took care of the high levels of pseudo and MRSA I was carrying, and before too long I was sent home on a PICC with a home health care nurse coming out to help me.

The very first night I was home, the home health care nurse came and set up a schedule for me to do my drugs. She then gave me IV Tobi, even though I had already had my one dose for the day, 10 hours prior. Shortly after, I started feeling very odd and different. I called my team and they suggested I might be dehydrated so I chugged gatorade and rested, only to feel worse a little later. They then suggested I head into the hospital again to be checked out. As blood tests came back, we found out I was in kidney failure. I had been given two doses of Tobi in one day, when I should have been given one, and it was too much for my body. I was then readmitted to the hospital to sit and wait until my kidney levels bounced back. The doctors were shocked, as it took nearly a week before we saw them start to drop. 

I made it out of the hospital just before Thanksgiving, but the doctors told me that it was no longer wise for me to carry another child. With the CF, the diabetes, and now damaged kidneys (they did bounce back, but pregnancy is hard on the kidneys and mine have taken a big hit now), it was simply too risky. Obviously, I have a beautiful daughter, and I can't risk not being here for her to try and have another child. This also was a huge hit to my mental health as I struggled with the depression of never carrying another child again. 

The last year, thankfully, has been a much better year. While we did manage to pass around EVERY sickness again this year, including Influenza A (it was TERRIBLE), I managed to stay healthy and out of the hospital. I haven't even had a course of oral antibiotics this year (knock on wood). I would say that the biggest reason for this has to be my improvement when I started the new CF drug, Orkambi. Once we knew that I couldn't carry a child anymore, we immediately started me on Orkambi as we had held off only due to pregnancy. It was a game changer for me. I handled illnesses so much better, and I saw a 6% increase in PFTs. My last FEV1 was 82%. Unfortunately, I did have a lot of side effects from Orkambi. Higher blood pressure, higher blood sugars, increased depression and anxiety, horrific GI issues where I'd be in the bathroom 8-10 times a day, and issues with ovarian cysts (I have to have surgery this coming summer to get rid of them). It was worth ALL of those issues to be able to breathe better and handle illnesses better, but it was a host of rough side effects. 

A week ago, I made the transition from Orkambi to Symdeko. I'm now 8 days in, and while the first week was quite rough, I'm doing better now. At first, I experienced a lot of shortness of breath and a horrible headache that lasted around the clock for days, but now I'm feeling really pretty good. I have more energy than I did on Orkambi, and for the first time in a year, I'm only going to the bathroom 1-2 times a day! I'm hoping the positives of this drug keep up. We'll see what happens as it continues, and I'm curious to see how it impacts my lung function, but I'm hopeful. 

<3 

My Struggle with the Pregnancy Decision

As I continue to edge closer and closer to my first round of IVF, I find myself becoming more and more apprehensive about the whole process.  For someone who has suffered with anxiety for a few years, I've been surprised at myself for not feeling anxious throughout this entire time.  I've tried to explain to others why this anxiety exists, but it's hard to convey to them just what a CF pregnancy means.  Despite the fact that many don't fully "get" it, I feel the need to write about it.  What follows is a small splattering of the thoughts that occur when I think about being pregnant, and I apologize in advance for the randomness that will follow.

I'm going to come out, right now, and tell you what my biggest fear is: dying during pregnancy.

I know..I know..it sounds dramatic. The thing is, it's not all that dramatic.  I started following all the blogs and boards regarding CF pregnancy last June.  Shortly after starting, I became acquainted with Nicole, a fellow cyster who was already pregnant and doing well.  Then, seemingly out of nowhere, she had a massive bout of hemoptysis and she and her sweet unborn son, Robert, ended up passing away a short time later.  

Following that, I have heard a scattered story or two about someone with perfectly good lung function doing terribly, or even passing away during pregnancy.  I will tell you, it had me terrified.  

I'm not terrified anymore, but the very real fear is still present.  It nags at me deep down when I'm least expecting it.  It's the voice constantly saying, "Are you sure you want to do this? Give up your body for 9 months? Deal with weekly doctors appointments for various doctors that you will have to see during the pregnancy? Are you sure you want to take this risk?"  

Then, there's the other voice.

The side of me that says, "I want my own child, and my body can do this."  I think about all the pros that I have going for me: My lung function is normal.  It's 86%!  I'm stable and have been now for 5 years.  I've only had 2 PICC lines ever, and the second one was for a precautionary reason following sinus surgery. I'm going to be at home the entire pregnancy, which means more rest, and it limits me from catching something from a work environment.  I have the best doctors, and they ALL are confident and excited about me carrying a child. I do my treatments, faithfully, and I will continue that regimen once I'm pregnant, and after the pregnancy is done.  I have a support system that just doesn't end; If I'm sick, I'll have help.  I also know my body, and I will be on the phone with my doctors at the first sign that something isn't right.  

Obviously, I've made my mind up about this, but I still do worry.  I also think that's just the way mothers-to-be are, in general, let alone if they have a genetic condition against them.  I just don't want my time with my sweet husband to be compromised because of my selfishness to have a child.  Yet, I know I'm meant to be a mother. I know that fact with all my being.  It's my purpose for being on this Earth.  

All of this being said, my husband and I have come to a pretty solid, although difficult, decision.  We want to have our own child for our first child (if we can).  After that, we have decided that we will probably either adopt or work through the fostering system.  The truth is that we both want more than one child (at least, right now), but we're not comfortable with risking my health twice for it.

Deciding to have a child has been the  most difficult decision in my life, hands down.  I hope I am making the right choice, but I also have faith that God has a plan for me which will unfold exactly how it is supposed to.  I also am keeping the encouraging, uplifting stories of fellow cysters, who have not just fared well during pregnancy, but improved in my mind and heart.  

I know that the nagging voice will still be there, probably up until the birth of my child, but I am trying my best to quiet it and focus on the good.  

To all my cysters who have already made this choice, did you also find it to be the most difficult choice you've made?

To all my cysters who are currently making this choice, I keep you in my thoughts and prayers, and I hope you find peace and confidence in whichever decision you ultimately make.  Trust me, I know how hard it is.

Spring, are you really here?? And a few infertility concerns...

Ok, obviously I KNOW spring isn't here, but it sure feels like it today!! It's supposed to be low 50s outside today, when we normally are averaging 20s for highs this time of year. I must say that this year has been the strangest winter weather I have ever experienced.  I'm enjoying the nice warmth that we are getting, but it is a little unsettling since this is so odd for us.

That said, on to my real reason for the post...

IVF will be starting in two cycles now.  It was supposed to start next cycle (right around the end of Feb.), but David can not take off for the last blood test he needs.  They want to do the complete test for CF (where they check for every single known mutation).  I understand why they want to since we will be doing IVF, but he needs to take the day off in order to have the test done.  Then, the test needs to be analyzed and then a letter of recommendation can be written for us to start the IVF process. I have an appointment on the 9th of February, and I was hoping he could come with me for that appointment.  He's a teacher though, so he can't take off.  His first day off is Feb. 20, and my cycle is due to start on the 22-24. I don't think that's QUITE enough time to get the test results and the letter. ;)

At first, I was quite sad about this.  I really wanted to start this coming cycle, but I realized that I have waited quite some time already so one more month won't make a difference at all. David was worried about how upset I'd be, as he knows I've been ready to get everything started. I explained to him that I realize he has obligations and can't take off whenever he needs to.  Especially with us doing IVF, he's having to be quite selective about taking days off because there will be quite a few days he'll need to take off once the process gets started.

With all of that said, I'm starting to get VERY nervous about IVF.  I think now that my liver doctor has given me the approval (pending the results of testing on 2/9), I am starting to realize how fast it is all happening. I started (foolishly) reading all of the risks of IVF last night, and I wound up feeling like a basket-case at the end of the night.  So why am I so afraid?

I will start this process by going on birth control to regulate my cycle and match it up to the lab's schedule (no worries here as I had been on birth control for over 10 years to regulate my cycles).

From there, I will receive an ultrasound to check my ovaries and uterus to make sure there are no complications they might have already missed such as a thin uterine wall or a few other issues they look for (again no worries here - I've had enough internal and regular ultrasounds that they don't bother me one bit..plus no real risk with these).

Then, at some point they will take me off of the birth control and start me on hormone injections (here comes the first worry).  I will be injecting synthetic hormones into my body which will stimulate my ovaries to produce A LOT of eggs.  The risk here is that I develop a condition called Ovarian Hyperstimulation Syndrome (OHSS).  This terrifies me.  Basically, the ovaries can begin to overstimulate, and left untreated this condition can become life-threatening.  My doctor ensured me that they will be checking me every other day to make sure that I'm not developing the condition, but my fear is still there. I'm also worried about the mood swings that come along with the hormones, and I worry about having some kind of reaction to the hormones.

If the hormones, against all of my worrying, work perfectly fine without complication, then I will be scheduled for egg retrieval (EEK!).  During this process, they will put me under with anesthetic and then surgically (minor procedure) remove as many eggs as they can.  They hope for 10 eggs each collection to work with.  Since not all eggs will fertilize, this gives them a good sample of eggs to work with.  Ahh,  my second and bigger fear.  I HATE surgical procedures, no matter how minor. I HATE being put under with anesthesia.  I always worry when I have to be put under, and I've had no less than 6 surgeries in my life so I should be used to it by now.  I'm not though.  This also worries me because they stated that they had trouble finding my right ovary.  I'm curious as to how they make sure first that I'm not developing OHSS, and then secondly how they plan to extract the eggs from this ovary if they can't find it.  Hmmm....

Obviously, I need to ask a few more questions and discuss the results with my doctor.  Hopefully, he can easily calm my fears, and I can go into the process with a peaceful state of mind.

Once this whole procedure is behind me, I will hopefully be blogging about how silly it was for me to worry so much.  Hopefully, I will then be blogging about all of my fears associated with the actual pregnancy...oh boy.

Sorry in advance for any anxiety-ridden posts which may result from this infertility journey. I did warn you all in advance, however, in my "About me" section..I'm a worrier!!! 

A Fine Line

My fellow cysters TTC will probably understand this post completely, but for my other readers, without CF, this is a common fear/struggle I think most cysters go through.

The last few weeks I've been doing some serious thinking.  Due to the blood in my sputum (which my CF doctor even thinks may be from my nose), I am worried about getting pregnant.  I worry that I'm on the verge of hitting an unstable period in my lung function (which would NOT be good for a pregnancy), but this could just be a fear that manifests itself because I have CF.  I have been compliant with my treatments, but not as much as I could be with exercise.  Maybe starting that back up full force would make me feel better overall and quell this fear of mine.  I just wish that CF didn't have to play such a critical role in our pregnancy.  There's so much more to consider and worry about.

I also was wondering if I could handle a baby 24/7, especially when I'm feeling miserable.  My dog was really wanting my attention a few days ago, and I was so tired that I pushed her away and fell asleep.  She of course was a good girl and laid down and went to sleep also, but babies aren't that easy.  I think I'm going to be relying a lot on my support system around me after my baby is born.  Thankfully, however, today helped to ease this fear.  I took care of a VERY active 2.5 year old and left with more energy than I've had in weeks.  It amazes me how much a child's energy is transferred to adults! I know it will be hard when I get sick, but it will be my full time job and I will have people around me for support. I probably will also have a daycare on hand in case I'm really sick for a day and no family can help.

So one fear is a little elevated and the other is slightly eased! :)  I don't know why I have been thinking about these so much, but hopefully my heart will be content with both issues soon enough.

Any of my other cysters who worry about these two things?

A Terrifying Night

We all have days when we want to destroy our alarm clocks and curl back up in our warm comfy bed, shutting out the world and refusing to let time pass.  I have these days from time to time, but rarely back-to-back.  Well, this entire week has been one, giant, curl-up-and-let-the-world-disappear day. 

For me, Autumn has always been a time to slow down and reflect (as previously posted).  This Autumn seems to be the exact opposite.  I also realize that I’m not the only one experiencing this right now.  I’ve been talking to numerous people who just feel like life is extremely difficult right now, or that it is moving way too fast and they are struggling to keep up.  I’m overwhelmed, plain and simple.  I’ve got a lot of things (not being put in the blog) going on in my life, and it’s causing me to stress out. 

I’m not sure if it was the stress, the antibiotic, or another problem altogether, but last night I experienced one of the scariest things I’ve ever had happen to me.  I woke up from a dream with a sharp pain in my chest.  It was a weird dream, but it wasn’t a nightmare, so I don’t think it was fear that woke me up.  Regardless, I started feeling my heart beating in my head and chest, and it felt…weird.   When I checked my pulse, I realized my heart was in some REALLY crazy rhythm.  It was beating extremely fast, skipping beats, adding double beats, and just plain terrifying me. 

Having never had this happen before, and having pain in my chest, I woke my husband up and we started to drive all the way to hospital (20 minutes away).  I am very reluctant to enter hospitals, but this episode downright scared me.  I couldn’t get my heart rate below 150 and it was beating really strangely, so I figured it was better safe than sorry to get checked out. 

Then, about a block away from the hospital, my heart rate returned to a normal rhythm and was beating about 80 beats a minute.  It happened all of the sudden, and then I felt fine.  So we waited a few minutes to see if it was going to continue beating regularly, and sure enough it did.  We then turned around and headed back home, where I proceeded to stay up from fear for the rest of the night. 

This whole event was so weird and terrifying.  My heart rate has been elevated since waking up from a nap this morning (it’s staying about 120) but my heart rate always runs a bit fast, so I’m not worrying about just the fast rate now. I just can’t figure out what happened.  I have been known to have panic attacks, but they have never changed the rhythm of my heart before, and I’ve been attack-free for months now.  I’m not drinking caffeine, and I drank plenty of water last night.  I honestly don’t know, but I do know I’m more than little worried of it happening again. 

I’m not posting this to my other blog as I really don’t need a lot of people knowing about this, but I did want to ask my fellow cysters/fibros if they have ever experienced anything like this.  I’m hoping I’m not alone on this one.

Until then, I’m going to go back to bed, curl up with a good book, and forget the problems I have to face for just one more day.  

Just Venting

I apologize in advance if this post seems negative or is so poorly written that you want to poke your eyes out.

I'm day 7 into my antibiotic (Levaquin) and all I want to do is sleep. Even right after waking up from a long nap or a good night's sleep, I just feel exhausted.  I'm also getting intense sinus headaches which makes me worry that the Levaquin isn't helping out enough (my lungs feel better but my head feels worse).  I took my temp tonight and it's 99.0 which again makes me a little nervous because I'm not used to running a temp a week into an abx course (not that 99.0 is really even considered a real temp).

So, I called my doc tonight and left her a message. I go to see her next week, but I'm concerned that she's going to want to put me on a PICC.  I know that other cysters and fibros have these routinely and probably don't even bat an eye when they're told they need one, but they still scare me.  I've only had 2 and each one has made me feel so miserable for the first week or so of the treatment.  I'm trying to find that balance between letting my body handle the sickness and letting IVs help me.  I'm just unsure what to do this time around....I don't know if my fear is prohibiting me from seeing the whole picture or not.

All I know is I'm day 7 into my abx, my heads hurting, and I'm exhausted. I'm also blowing out green snot, but I do that on pretty regular basis anyway (ever since my sinus surgery). UGH...so frustrating.  I guess we'll just see what the doctor has to say.

Questioning...

Thoughts and Questions that keep running through my mind:

Will I be a good mommy?
What if we can't get pregnant?
Is my lung function ok to handle a pregnancy?
I know it will be hard to fit in all my treatments and a crying baby....
Am I throwing too much responsibility toward my husband when I get sick and he has to take care of both of us?
What if we can't get pregnant?
What if the baby has CF?
What if I take another few months to get healthier and then start trying?
What if we can't get pregnant?

My darling hubby and I have addressed these concerns and we are still wanting to start trying now..but the questions still run through my mind...