Thursday, June 28, 2012

Kalydeco Update and other Random Collections

First off, since I'm a terribly inconsistant blogger, I thought I would give you my 1 month Kalydeco update, about 2 weeks late.

Basically all the side effects I've experienced have finally passed... except for maybe the increase acne. Oh what joy! I still have an amazingly productive cough, and I cough less frequently. Very similar to when I get out of the hospital. I have a great supply of energy but still no weight gain. I'm thinking I may need to start checking my sugars once again since that could be the culprit.

I had a clinic appointment 17 days into my first Kalydeco month. My lung function went from 2.33 L (fev1) to 2.63 L (fev1); also known as 70% - 76.6%! Amazing. I haven't seen a number that high since High School... 17 perhaps? 6 years ago! Also, please note that 76.6% and/or 2.63 L is about 2% .2L higher than my post hospitalization numbers, which never stick around for very long before I'm back down hovering around 68-70%.

I've noticed since switching over from cayston to Tobi, that I cough more on tobi, and I cough more gunk up during this tobi month. It's pretty consistant with my behaviors without kalydeco. I respond better to Cayston for puesdo killing than I do on tobi. However the difference is a lot more noticable on Kalydeco.

The only annoying thing I can think of about Kalydeco is I find myself needing to clear my throat of mucus ALL the time. Almost everytime before I speak, I find myself *ahem*ing. Tremendously annoying when you're trying to softly hum sleepy sounds to a tired baby and you all of a sudden can't hum anymore because the mucus in your vocal cords has made you mute. enter *ahem* and then you're good to keep humming but baby is also now awake. Sigh.

Next order of business:this article. The one about parents suing and being awarded 13 million in damages for their child born with CF. Ronnie Sharp- over at Run Sickboy Run- posted this on his facebook page and it received quite a few comments. The majority of commenters all had something to say along the lines of "That poor girl! Knowing her parents think her birth was a mistake" or "those parents are so selfish!" "messing with god's plans" and so on.

For a long time I've struggled with accepting that some people just don't mind their CF. It makes them stronger as a person. Tough for me to swallow but to each his own. Yet, when I read this article and then the comments afterwards all those pent up opinions wanted to break out. I wrote a comment, and then deleted it, not having enough courage to click 'enter.'

I truly believe that when people with CF claim 'they wouldn't trade their CF because it's made them who they are today," blah blah blah, that it's a coping mechanism similar to denial. No one would choose to be born CF, no one would wish their loved ones had it, no one would wish this children had it... so why, do people keep telling me they wouldn't trade their CF for the world? If they were truly honest about not trading CF, why would they be so excited for advancements for a cure? You wouldn't trade it, yet if a cure were to roll around you probably would be in line to rid your body of CF. So why not admit that you would love to trade your CF?

These parents are suing the company because they believe they were wronged. I agree with them and support them. If I had the chance to be born without CF, but due to perhaps some negligence on the labs' behalf, I was born with those 2 mutations, I would want to hold the company who messed up accountable. That little girl's life will greatly differ from her twins' life. No matter how much they try to 'normalize' her CF, it just isn't normal. It is a genetic mutation. A mutation. Something that should not be existing and function in nature, but because of advances in technology it is. I am terribly grateful for these advances, but Cystic Fibrosis is not something I would ever choose to have.

These parents aren't selfish. This little girl shouldn't be horrified about the 'wrongful birth' suit, she should be grateful that her parents cared that much, and put that much effort in to help alleviate some of the cost associated with CF so that perhaps the margin of difference between her twin brother or sister, can be that much smaller. I think we need to support these parents just like we do all the other CF families.

And that's that.


cindy baldwin said...

YAY!!!! I am so excited for your numbers and hoping that your weight gets up soon too!!! I didn't gain any Kalydeco weight until after the first month. In fact, I don't think I gained any Kalydeco weight until after the SECOND month. And when I did it was only a few pounds, but I was also very close to my target weight so I was eating a pretty 'normal' (not weight-gain) diet. I think if you really hit the weight-gain diet over the next few months you could probably gain several!!! Good luck.

Also, I HAVE THE THROAT CLEARING THING TOO! I lose my voice all the time and there is ALWAYS so much gunk in my throat. I do consider it a good sign, since when I have gunk in my throat it is because I'm clearing stuff from my lungs and it gets caught there. But it's still definitely annoying! And it definitely hasn't gone away for me. Ugh! Hopefully it will eventually... though if it comes down to it, I'd rather have kalydeco + throat garbage than no kalydeco.

As far as the lawsuit story goes - I would happily give up my CF in a heartbeat. However, I guess the way I feel about it is that everyone has SOME kind of trial, and if I'm being honest I'd probably rather be stuck with CF than some other things I've seen (like mental disease!). I do feel like CF has made me a stronger and richer person, but that wouldn't stop me from wishing all the time that I didn't have it. ;)

Anonymous said...

Sorry for the long comment!
WOW!!!! It is great to hear that Kalyedco is working for you. You mention about a baby in your post...Did you have a baby?

So I would like to give my comments on the $13M lawsuit that Ronnie posted on FB. To start, my wife and I went through this same procedure Pre Genetic Diagnosis (PGD) with IVF. My wife ended up being a CF carrier and as I have CF we wanted to do EVERYTHING possible to insure our future child would never have to deal with this disease. On top of this process we also found out my wife was infertile. Talk about some very stressful and depressing times.

Through this journey, we were willing to do everything and anything to have a child without CF because thats what parents do they want the best for their child!!! Let me side note this with a couple things. We did not use the same lab as the couple that sued but we almost did. We used a lab in chicago called RGI who are the pioneers of this technology. Our insurance company would only pay for us to use RGI and not Genisis (I am not sure why). The lab created a probe to test the embryos with both my wife and my DNA from our blood sample. The lab told us that our probe was successful and our rate of detection on the embryo's was 95-98% which is the highest possible.
We had to sign papers of course that stated the detection rate and that human error is still possible etc etc.

So my wife and I went through one round of IVF where we transferred two embryos that did not have CF. This cycle ended in a chemical pregnancy. Second round of IVF my wife and I transferred two embryos that did not have CF. One of the two embryos took and our little miracle is coming true this October!!!

Getting back to this couple that had the lawsuit against Genesis. They had already had twins and one of them had CF. You cannot fault the couple for wanting more biological children. They were doing it in my eyes the best way possible with PGD. This couple had to sign the same papers as we did with the human error and percentage of the probe etc. The couple and lawyer must have had the lab investigated and it must have turned out something they did was not right. The attorney stated that the lab had made a catastrophe of errors and record keeping.

The lab was in the wrong according to what was found! Why wouldn't you be pissed if the lab did something wrong and obviously it wasnt one mistake (catastrophe of errors!!!). The insurance company is paying for the lab to do their job come on people.

The couple must have been devasted to find there was something that this lab could have done to change the outcome. They are sueing because they did things wrong and should be held accountable for it. The couple put their faith and trust in this lab. I stand behind this couple 110%

Take Care

Beth said...

Cindy-- Glad to know I'm not the only one clearing my throat all the time!! I'd gladly take it over the alternative though too. =)

John -- Thanks for your comment! Congratulations on your upcoming child! You and your wife must be thrilled.I can't even begin to imagine the stressfulness of your journey, but I'm beam with excitement knowing your reward. =) I however, did not have a baby, I just nanny for one.

I'm really glad you shared your opinion about the lawsuit. Sometimes I feel frustrated in/with the CF community when I read such negative comments judging the parents for the actions they assume to be the best for their family. It's reassuring to know others see eye to eye with me on this types of issues.

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