All About January

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Some of you may already know, but this Patten family has had a rough go of it. Early in the month the flu hit (my brother & SIL) Mark and Jess’s house – both Mark and Jess had it at the same time. Mark got sick enough that he spent a few days at the hospital at U of M, before coming home on IV antibiotics. Jess was sick with the flu on top of recovering from a hysterectomy also in early January. Their 3 kids stayed with my parents for two weeks while we all tried to prevent spreading of the flu (successfully, by the grace of God!).

It’s been long and hard.

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After a few days back at home, Mark’s health was declining once again and my Dad brought him back to U of M a week ago Sunday. The flu had progressed to pneumonia and he’s got a decent case of it. The recovery is not a quick one. Even today, his fever is back. He has been slowly making progress and a step backward in that progress is a bummer. We are all so grateful for the care he is getting at U of M!

Jess, however, has been feeling better and better (flu’s gone, and her recovery from surgery a month ago is going well) and she was able to spend a couple of nights in Ann Arbor with Mark last week. She also had the kids back at home last night! With 3 busy little ones that’s great progress.

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Of course I’m leaving a lot out but the point is that things are hard right now. We welcome your prayers on behalf of our family! I know some of you will want to help in other ways, and it would be much appreciated. Thank you for loving on my family during this time! I hope to have better news next time you hear from me.

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2017 – An Actual Highlight Reel

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Happy New Year! Here’s a little preview of our card that was just sent out this week.

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In defense of my tardiness, I was sick through the holiday card season and decided not to worry about it until after. Why do you think we send New Year cards instead of Christmas? No deadlines!

I haven’t done much posting here this past year, so now.. where do I start? I’ve decided to just do a highlight reel of videos from over the year. Obviously our moms will be the only ones to watch them ALL but you know, pick your favorite.

Our year’s highlights included a couple of fun trips, and the first one was back to Palm Springs/Joshua Tree in March. I had just finished a round of IV’s and you know, we just followed the sun. We discovered our dream neighborhood (a trailer park – seriously, watch the video) and explored the Desert X Mirror House before the hype/crowds really hit. (Desert X is a new ArtPrize-type event in the area, that should help Grand Rapids people understand)

From there we went over to Joshua Tree and stayed in the best Airbnb we’ve ever had. The location was perfect and … AND.. it had a steam shower. It changed my life and now we’re putting one in our house. As one does.

As many of you know the Patten family has had a couple of hard years health-wise, especially with my SIL Jess fighting migraines among other things. We do spend a lot of time together, which we all love, but we don’t spend many days at the lake together. I’m glad I brought the camera along for this afternoon in July.

Another highlight of our summer was traveling to NYC with 40 of Josh’s students and 5 adults. Whew! Just picture a group of 45 working their way through Times Square on a busy afternoon, or the subway, or going through the line at a fast food restaurant. Or, you know, anywhere. By the grace of God no one was lost, no one lost anything, and we all had a great time. This is a long video but you’ll basically tour NYC in its entirety if you watch it. And you’ll get to see Josh on the job, always a treat to me.

The last video I’ve got is from a few days spent up north at the end of summer. Josh’s busiest season of work is the first half of “summer break”. That’s when they do a 6 week summer school program where his high schoolers live on campus at GVSU. So, we like to take a breather when the summer program is over. We keep wondering why we don’t spend more time in this area of MI – it’s just so beautiful.

After a healthy summer and fall, I had the opportunity to take a road trip up the Pacific Coast Highway with my good friend April. We live in different places and even just that much time together was a luxury. Not to mention, could you ask for a better place to road trip? So here comes the sad part – of course I brought my GoPro… Took soooo many videos… And my camera card was EVILLY corrupted. So no video from this special trip. We’re consoling ourselves by acknowledging that people used to just survive on memories. But. UGH. Anyway, what a great trip!

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After the trip I spent most of early winter fighting off a lung infection, which involved a confusing allergic reaction to meds in November and ended up on IV’s in December (see my last post for more). I’m happy to say that the IV’s seem to have been successful and I’m coming out of my “hole”, a wonderful way to start the new year. Being sick this time of year is somewhat expected, but no fun.

Not captured on video is a home project that Josh and I have been working on – putting a bathroom/laundry room in our unfinished basement! That steam shower I mentioned is THISCLOSE to being a reality. We’re also looking forward to doing laundry in our own house again. It’s pretty exciting!

So there’s a little update from our house! We so enjoyed hearing from many of you over the holidays. May 2018 bring many blessings your way!

(If you were unable to see the videos from this post, see them here)

 

Hospital Hang Time

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Happy December!

I took this picture today on a beautiful walk in sunny warm weather.. at the hospital at U of M in Ann Arbor. So how about a little health update, huh?

I’ve been fighting a lung infection without success on oral antibiotics for weeks now, and on Thursday we finally reached the point where we knew I needed more help. This time, one of the IV antibiotics chosen by my doctor is one that I am allergic to, which means I have to spend a few days here at the hospital. I was successfully desensitized to it yesterday (this is my second time doing this process. The first time was almost 2 years ago. It blows my mind.), and tomorrow I get to go home for a couple of weeks of IV’s. I’m so grateful for the really great care I get here at U of M but obviously we’d rather have me home.

Thankfully, I haven’t fully “fallen apart” and I don’t feel super sick, but I do have enough symptoms to have confidence in this decision. One unseen difficulty of living with CF is knowing when to push through and when to ask for more help. It’s one of the hardest things, making those decisions.

Anyway, I am a little foggy and not feeling all that wordy, but wanted to let you know about it. Some of you have been checking in lately and not getting calls/messages/emails back (sorry!) and this is why. I hope I can be a little better about responding in the future, but thanks in advance for your prayers and well wishes! I hope to have a happier update soon.

Update on Jess

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Edit: SCROLL TO END OF POST FOR UPDATE..

Posting a blurry picture of a hospital bed because I don’t know what two years of headaches really looks or feels like…

So here it is, after almost two years of suffering from daily migraines, this week finds my sister-in-law Jess in the hospital for treatment. She has had a long road of many tests and treatments and life changes brought about by these headaches, and this is the next step in the search for healing. The goal is to break the cycle and get 24 hours pain-free, which will also hopefully shock her system and set a new course away from pain. This morning while I was there she said her pain was at a “9” out of “10” so the meds haven’t kicked in yet. The doctor said they may not until her fourth day, two days from now.

(I should probably also say that Jess isn’t allowed to have visitors – so if you want to send something her way I can help you out with that)

I’m letting you know because this is a really good week to be praying for Mark and Jess and their family. As you can imagine, with 3 little ones this is a big undertaking and we desperately hope it will be helpful to Jess. ALSO. Mark (has cystic fibrosis) is not feeling well. It is very possible that he is looking at a course of IV antibiotics which is its own kind of circus.

It is likely that the next few weeks at their house are going to be tough. Thank you in advance for praying for and loving on our family!

BTW here’s a shot of us from the other night – photo taken by special visitors from out of town, Uncle Dale and Aunt Juanita!

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Two words: tent dress. Two more: bad choice. I’ll leave you on that note. Hehe!

Okay, here’s an update from 8/22/2017: Jess was sent home yesterday after a rough weekend. The bottom line is that the treatment wasn’t effective enough, which is a disappointment. Over the weekend her picc line ended up having to be pulled and she had a break from meds which did complicate things but I don’t think it would’ve changed the ultimate decision by the doctor. Her next step is an appointment with her migraine specialist this coming Monday. Mark is still on orals, still feeling sick, and I believe the kids might be back home tonight (my parents have had them) but we’ll see. Thank you for your prayers, keep them coming! This is not a one-week thing in Jess’s world, it is ongoing.

Some Summer Stuff

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Happy summer you guys! I’m just popping in quick because the to-do list is a mile long today. Josh and I are leaving SUPER early in the morning with 40 of his students (and 3 other chaperones) for New York City! Pray for us. Heh.

Actually I’m really excited – they take a trip every summer and they do so much fun stuff. Last year was the first year I went along (Disney World, I wrote about it here) and the kids were so fun to be with. I’m really looking forward to it!

My big role on the trip is to make a video, so I’ve been doing a little practicing. This past weekend we spent the afternoon at the beach with my family and Josh’s brother Nate to celebrate Josh’s birthday, and I made a fun little video just for kicks. It’s got windsurfing, wave jumping, and Clara’s obsession with the camera. Check it out!

Video link here.

 

The Walk

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Another Great Strides Walk is in the books, you guys! Thanks so much to everyone who gave $$$ and time to raising money this year. Our team raised a whopping $2,765! I’m so humbled by your generosity each year and you inspire me to give big too. So thank you! I didn’t post an update right away because I actually started IV antibiotics right after the walk. It had been 15 months (!!!) since I’d done IV’s and my lungs just needed a boost.

I’ve been done with all of the meds now for just over a week and things are looking up. Truthfully, I was hoping for more of a boost than I seem to have at present, but I think that will probably always be true. I do feel as though it brought me back to my “baseline”, whatever that is. Ha! CF can be a hard thing to figure out.

I’m slowly crawing out of the “IV hole” and getting back into more normal routines. For example, I hardly spend ANY time in the kitchen when I’m sick. I gag easily and my appetite is always at risk on meds, and Josh is so SO good to me. He does it all! It takes some adjusting on the other end of meds.

Anyway, just thought I’d pop in and let you know where things are. Thank you again for your support of the Great Strides Walk!

(In case you’re wondering, I’m not in the picture of our team at the walk because I don’t actually do the walk. I have bacteria in my lungs that I don’t want to share with other people with CF, and I def don’t want theirs! So I join our team afterwards, but this picture was taken before it started.)

 

Some News

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I had a checkup with my CF doctor recently and he had some good news about research that I want to share with you today!

The appointment itself could have gone better – I ended up on oral antibiotics. It’s been two weeks now (out of 3) and I’m seeing some improvement, so I’m grateful for that. Weirdly, my voice has been a topic of conversation with my doctor lately. He even had me be seen by an ENT, a first for me. I’ve been taking an inhaler for a couple of years now that brings a couple of fun side effects with it. One is a monthly case of thrush, which isn’t a big deal. The other (at least we wonder if it is caused by the inhaler? Hard to tell..) is that I’ve been hoarse and losing my voice a lot. People often assume I have a cold (I don’t). The only information we got from the ENT is that I have some scarring on my larynx that can’t be reversed. Hm.

Also my lung function has been low for quite a while now, lower than anyone is comfortable with. Both my doctor and I like to think that it can come up some. There is a cyclic component to CF that does bring hope of improvement, but we can never know for sure. Anyway these things led to the decision to do antibiotics and I have felt improvement in both areas, which I am grateful for! Not sure how much “room” I have gained in my lungs but even by reducing congestion I feel relief. So as always we are grateful for your prayers in regards to these lungs of mine!

ANYWAY on to the good news! To be honest I don’t keep up with CF news much. We spend more energy on living life despite CF, but we are grateful to all who work daily on our behalf. So you may know this already but it was news to us. There is a new drug coming down the pipeline that is scheduled for release in the next 6-7 months, and it sounds like an “improved version” of the one that came out two years ago, which I blogged about here. The last one did NOT work out for me, although I think my brother Mark still takes it. I got pretty sick soon after I started it and we think that I was one of the people where, instead of helping me some, it hurt me some. Or at the least, I just didn’t benefit from it. The new medication that is coming is said to be like the Orkambi, but minus the negative side-effects. I’m listening!

Basically two years ago Orkambi changed the starting point for research, and many of the new medications coming down the pipeline are springing off that platform. It is exciting stuff! Do you see where we’re going here? …..

That’s riiiiiight, our Great Strides walk is coming up NEXT SATURDAY and you have the opportunity to be a part of this exciting moment in CF research! If you stuck it out this long through a very wordy post, I thank you.. And, here’s the link to join my team! Or just donate! 

Thank you for giving to this cause, and for the love and support you give our family. Sending the love right on back!

Great Strides 2017

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If there’s one thing we can count on me for, it is for being LATE in bringing up the Great Strides walk every spring. Every year! They start in on me in December, and I’m all, “No way! I’m not bothering anyone until a month beforehand because I like having friends.” And then suddenly it’s less than a month away and I have no idea how this happened. Every year.

Soo, thank you for being gracious with me once again as I ask you to consider joining us at our walk on May 6th at Millennium Park! (Registration at 9, walk at 10)

We are so grateful for your generosity to this cause in the past and hey, why stop now? (UGH AWKWARD) (this never gets easier) (probably why I put it off every year) … Of course if you’re unable to join us at the walk but would still like to donate, you can do that here! Truly, as someone who has reaped the rewards of the CF Foundation’s research and who is counting on more of it, I do thank you for giving to them.

OKAY we woke the blog up from winter slumber. I guess that means I’ll be back soon with other stuff to post about, including where the photo (above) was taken.

Let me know if you have any questions about the walk!

Liquid Potassium? Ew.

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You will never meet anyone more excited about disposing of expired meds than I am. You may as well not even try, you guys! And THIS one here has me feeling extra happy. It’s been a while (over a year) since I’ve updated you on my health, and I’m starting to think it’s never going to be a good time, I’ll never know what exactly to say, and I may as well just put SOMETHING out there. So here goes!

Living with CF in 2016 started out terribly. I got sick right before the holidays at the end of 2015 and was having a hard time breathing. I don’t have much margin for “error” and this was a big dive. I did a round of steroids and IV antibiotics over the holidays (so not recommended). It helped some but not enough, and I needed a second round of IV antibiotics in January 2016. The one my doctor most wanted to use (based on culture results) is the ONLY antibiotic I’m allergic to. This meant I had to be admitted to the hospital in Ann Arbor for a couple of days to be desensitized to the med and make sure I was stabilized. We never knew desensitization was an option, and were thankful that it brought that medication back into rotation. Soo I was in the hospital over our 10th anniversary. (Don’t worry, Palm Springs in the spring made up for it!)

Once home and back on IV’s (including the one I am technically allergic to) in January, I started having issues with my heart rate, something totally new to me. It culminated with an afternoon call from my Dr who had just received worrisome lab results and wanted to admit me to the hospital (back in Ann Arbor) to get things under control. Thankfully, by the end of that conversation, we compromised with me drinking liquid potassium on top of all day bananas and taking magnesium, etc..

All that to say, it’s been a YEAR now since that mess, and the nasty nasty potassium is leaving the building! BYE. The rest of the year was nowhere near as dramatic, by the grace of God, although I did have a couple of decent colds which required oral antibiotics. The happy news, which I am so surprised about, is that it has now been a year since I’ve done IV therapy! This is a long time for me and very exciting. Also ironic, now that I have a port. Hah.

I do need to temper that happiness by saying that I am only working on more or less than 40% of my lung capacity so things could definitely be better. There is always the possibility of improvement, but never the promise of it, you know? Josh and I don’t spend a lot of time worrying about numbers, etc; we focus on what is right in front of us and do our best. The older I get, the more grateful I am that God has gifted me (us!) with an optimistic spirit. It is hard to explain how significant this is to me. There are times or moments of fear when things get tough, but our LIFE is full and joyous (Nehemiah 8:10b!).  Swimming keeps me healthy and always helps me stretch my boundaries, and Josh makes sure I keep exercising one way or another. He is my other greatest gift from God!

We’ve been getting very un-apologetic about staying away from people with colds. It is harder than it sounds, but we believe it to be very important. So far this winter there have been three separate instances where others around me got knocked on their knees by some virus or other and I never even had a sniffle. I was telling my mom that at work the other day, and we had JUST  finished listening to this song. I couldn’t say it better myself. (The visuals on this video might be distracting, but give it five minutes and you won’t be sorry!)

So anyway, there’s my health update! It’s late January and things are looking up. I just hit a goal in the pool that I haven’t hit since my last cold in October, and we’re encouraged by that. Thanks for the love, and as always for the prayers.

Mark & Jess

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Oh, the cuteness.

I took these pictures of (my brother) Mark and Jess and the kids a couple of weeks ago. They’ve had a big year this year, with Baby Clara arriving. But behind the scenes things have been difficult. I haven’t talked about it much here, but Mark & Jess are in a place where they could really use the love and support of their friends and family.

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Colleagues from Jess’s work set up a Go Fund Me page for them because their situation involves financial strain. On that page I wrote more of a description of what is going on with them, and instead of writing it out twice I’m asking you to check it out here!

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Thanks for caring for these people that I love.

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