Thursday, December 26, 2013

Off to the Doc I Go!

Today I woke up in a dilemma. To call the doctor or not call the doctor. I woke feeling a little better than I had earlier in the week. I've had a low grade fever (sign on cystic fibrosis infection brewing in my lungs) for approximately two weeks now. I thought, if I made the effort to see the doctor I would end up having great lung function and look like the girl who cried wolf.

Well, about 5 weeks ago I had approximately 36% "lung capacity" FEV1. That was the highest number I'd seen since spring. I woke up this morning almost fever free but decided to call the doctor anyway, based on how crappy I'd felt on Monday. So it's three days later and wouldn't my luck have it, since I'm VIP, he's got about 3 slots open for me today, the day after Christmas!

I picked the 11AM so I could at least get an hour of breathing treatments done AND a shower before I headed out to what I knew could be a very long day. I was imagining blood work and xrays. But let's not get ahead of ourselves. Let's see what that little PFT machine has to say first.

Well, it was not good news. 29%. My doctor said I did not have the choice to use oral antibiotics at this point because they would most likely not work. And I said, "Look, the only reason I'm here is because I'm going to Cabo in about a month. I need to be healthy for that." He asked me if I wanted to go into the hospital today and I asked him if he thought I looked sick enough to need to be in the hospital. We both agreed no.

But we did agree to 3 IV antibiotics, 3 times a day. That's 9 doses a day, every day, for at least 14-21 days, if my little body can handle such abuse. I'm going to be on Zosyn, Merro, and Ceftaz. Hopefully I can clear some of this thick mucus out of my chest before my big trip. Hopefully my body can handle these drugs long enough for them to have a therapeutic effect. And hopefully I can do this without neglecting my family, because it is Christmas vacation after all!

So after my 11AM appointment with the doctor, I had a noon lunch date with myself at La Fiesta. OMG carnitas tacos with a side of rice and Mexican Coke. Pure heaven.

Then I made it around the block to my 1:00PM check in for my interventional radiology appointment to get my PICC line (IV) placed. IR is where they use ultrasound and xray to place a PICC line in a hard to place person with bad picked over veins.  And there I waited. And waited. I waited until quarter past three, when they finally called me back. Luckily with my truckload of ativan coursing through my system I wasn't nervous or even bothered by the long wait, or the painful procedure.

I finally got home around 4:30. IV drugs were delivered at 5:30 and I'm all set to start my first round at 8:00PM. They only forgot one product, which I have spares, so it's no biggie until I get them to deliver the forgotten product tomorrow.

Told you it was a long day. To celebrate we got take out tonight. "My Thai Basil" which is one of my faves.

In between my plethora of breathing treatments and IV treatments tomorrow, I hope to de-christmas the house a bit, by taking the ornaments off the Christmas tree. Then I have a dressing change for my IV site at 3PM, at which time we will kill two birds with one stone since we have to drive to downtown Sacramento, I'll get dropped off at BIC (Buhler Infusion Clinic) and the kids will go for allergy maintenance shots. Then by the time they are done, I should be done, I hope! Hopefully tomorrow is not as long of a day as today was, with all the waiting around.

You wouldn't believe the number of phone calls I have to make once the decision is made to do a PICC line at home. There's faxing of paperwork to the infusion clinic and appointments for the PICC placement. Faxing of paperwork to the PICC placement place. Then going over supplies with the pharmacist, scheduling delivery of said supplies, once PICC is placed, more faxing of paperwork to prove I have a functioning PICC line and the details of how it is places in my arm so they can compare how it looks from week to week. They don't want the line sliding in or out of my arm b/c that messes up the placement of the PICC line.

I think I have bored you enough with my over sharing. I'll be trying not to throw up and taking many naps in the next 14-21 days.

Tara Out.

Tuesday, December 17, 2013

Christmastime is Here!

November 2013 has come and gone, which means the planning and choreographing of the Telford Family Christmas card photo has come and gone. This year's inspiration came from America's Got Talent of all places. The twins fell in love with the Kristef Brother's hand balancing act. I had some delusions of pulling off something far more complicated than feet to shoulders, but that's how we ended up in the end.

We've got the Christmas spirit, how about you?

The most frequently asked question about this year's card is, "Is this real or photoshopped?"

I can tell you it is mostly real and very spectacular. Paul photoshopped some power lines out of the final version. I think the easiest way to show you that this indeed was very real and not photoshopped is to show you a few of the outtakes from that day. 

Poor kids took the brunt of the accidents as they had the furthest to fall. No one broke any bones and Paul is the only one that ended up with a bruise, on his shoulder. 

The twins are already asking how we are going to top this card next year. I think I better start hitting the gym!

In the last day or two friends have been comparing my card to the viral video Christmas card of the family in matching pajamas. Sure they did a lot of dancing but I didn't see any stunts! I think our card this year just might have to go down in history as plain awesome. Team Telford USA!

Thursday, September 19, 2013

Transplant Just Got Real

Whoa, so.... I finally heard from Stanford this afternoon. They have a 4 day long double lung transplant evaluation process where I get poked, prodded, and attend information meetings with all sorts of transplant officials.  It's a Monday through Thursday process, should I be willing to take the challenge. I was told that it can be broken up into different weeks if I so pleased. No thanks, just hit me all at once!

They have dates open starting October 7. Let me say that again, October SEVENTH!  That my friends, is only 2.5 weeks away. Yes, please!

I already got my financial packet in the mail this past weekend. My insurance is awesome. They cover everything, 100%, even 2 meals a day for two people, up to $10K in total during my actual transplant. Can you believe that?!  And I have no lifetime cap with this insurance. Open enrollment for Paul's employer is coming up in October, I sure hope we get to keep this insurance in 2014.

So that is my news. I know October 7-10 will be long, hard, grueling days because of course I have boundless energy, because I'm dying and all. I actually feel pretty strong and good and I think I can attribute that to my oxygen tether. My next appointment for some lung function tests is in one week with my regular doctor in Sacramento, next Thursday. I don't feel better than a month ago, but I don't feel worse either.

I'm not sleeping well, but that has been the case for years. It's gotten worse this last year, as Paul has told me that my restlessness actually keeps him awake, or wakens him nearly as often as it wakens me, which is a lot, I've learned. I have this smart pedometer I'm wearing for a month. It's called a FitBit One. It tracks the movement of my arms during my sleep so I can see that I'm not out cold for more than 60 minutes at a time, and if that length of time happens more than once in a night, hallelujah! It doesn't. So I've learned that I'm getting a choppy 5-6 hours of actual sleep, while attempting to sleep for 10+ hours. No wonder i'm tired!

That is all. Team Telford out.

Friday, September 06, 2013

One More Hurdle

The latest on my double lung transplant situation:

I heard from my nurse last Friday that there was a test Stanford wanted me to do before they would even consider me for transplant. My nurse emails and says, "I hope you don't have to do THAT test!" And she sent them my latest creatinine score of 0.99...and then we waited over the holiday weekend.

And waited.

Longest weekend ever.

Tuesday rolls around and my nurse says, "So they want you to do THAT test. Here are the orders." Basically I had to collect my urine output for 24 hours, store it in a milk jug type container on ice and return it to the lab the next day. Well I returned it on Thursday morning and the results were in today. I don't know what the results were, but Stanford liked them!

So now there's just one more hurdle. My insurance has to approve the money for the transplant evaluation and THEN I can be schedule for the 4 day tour of my body to make sure I'm sick enough but strong enough to require a double lung transplant. Whew!

On the way home from allergy shots today I told the kids this news. Then the question came up, "Mom? How long do new lungs last?"  Well since there really is no answer to this question I said, "On average, 5 years."


"Mom? What happens when they expire?"

"Well, you either go get more new lungs or you die."


"Ok" they both agreed, then Tom says, "I would just keep going back for more and more until I was used to it and it didn't matter to me anymore that I was getting new lungs. It would just be like, "oh we're just back at the hospital for a month again for more new lungs" and then I would go on my way."

Yeah, it works something like that. When you're 8.

I should also mention that the blood creatinine THIS time was 1.23 which is more my normal value, which is "normal" for me, but high for a normie. I'm not sure where the 0.99 came from. I honestly think it was a lab error since I haven't been that low in a decade.

Wednesday, August 28, 2013

Holy Creatinine, Batman!

My nurse emailed today. "I have some blood work results from Monday," she says.  Most of it was good news, no, fantastic news. My kidneys are almost NORMAL! I haven't seen numbers like this in years. There's no reason for the sudden normalness, but I'll take it.

My creatinine was 0.99, even before I started IVs it was 1.22. My eGFR was 73. What, what?! That is a NORMAL value. Are we sure we tested the right person's blood? I'm so pleased.

BUT my iron is low. Very low. So low my nurse thought I wasn't taking any iron supplements. 9.0 to be exact. That's low for a normie, and even for a CFer. And it's very low for someone taking iron! To be honest, I've never hit 12.0 (the low end of normal) in my life, so I'm not asking for much. But a couple of points, puh-leeze, after I spend $45 on a supplement that lasts just 15 days. You know what this means, steak. Lots of steak. Steak every night!

We are in the midst of thinking about planning the twins' birthday party(ies).  I think they are splitting up this year. Funny though, Tom does not want to miss Abby's party. Abby could care less about Tom's. Should be a fun month ahead!

Sunday, August 25, 2013

Small Update

My nurse emailed on Friday to say she had sent my referral to Stanford. What this means is Stanford now knows who I am and that I am asking for a chance to meet with them for a double lung transplant evaluation. I'm not sure what will happen first.

They might contact me to say they have the referral.

They might contact my insurance to see if the transplant evaluation is a covered benefit. (It should be!)

Once my insurance approves the transplant evaluation we will talk about dates to do the evaluation. At this current time they are booking evaluations approximately 6 weeks out. If the stars align I expect to be evaluated in November. I'll be lucky if it's October. I just hope it's before I get my first virus of the winter season. Sometimes I don't get sick until Thanksgiving, so I think we have a lot of time to wait and play with.

That is all the news I have for now. I know it's not much, but it's something.

In other news the twins are thriving at school. Their fourth grade teacher is amazing. They really love him and he loves them. He is a big history buff so I'm sure the kids will learn more than I know about all sorts of history facts. He also likes to play cribbage and chess. He has already started teaching the class how to play chess. They are starting with the pawns. Tom was so impressed he said "Mr. S. is the best teacher I've had because no teacher has ever taught me how to play a board game before! Except Mrs. R. (third grade) taught us German Dodge Ball and that's pretty amazing."

Tom and Abby were so excited to start playing chess right away on Friday when they got home. They made me make a chess board out of a piece of paper with 1"x1" squares. I ended up ordering a cheap magnetic chess set with plastic pieces they can tote back and forth to school on Fridays "Chess Day." And they will be able to play at home as well. They don't know about it yet. It arrives on Tuesday. I think they will be ecstatic!

Wednesday, August 21, 2013

To Transplant or Not

Well, it's official. My doctors have reviewed my case and they are confident it is time to refer me to Stanford for a transplant evaluation. Once all the ducks are in a row and paper work is faxed away, it could be a few weeks before I hear from Stanford. Then it will be 6-8 weeks before my 4 day testing of evaluations begin.

I'm going to need lots of help during those four days. I'd like to have as much company as possible. Paul of course will be with me, but it'd be good to have an in-law, sibling or parent with me as well. We'll be living in a hotel across from the hospital for 4 days and it will be exhausting for me and everyone involved I imagine.

Oh, and I'll need a babysitter for four days as well. I'm hoping it can be during November when the twins are out of school. That would work best. Heck, if we all wanted to go down there and get a few rooms we could do that too.

I would just need someone to entertain the twins in Palo Alto while I do my testing. Most of it is eduction but there are a lot of blood draws, CT scans and a right heart cath, usually on the last day, which is the most grueling of exams.

I'm really looking forward to the testing phase to find out if I get listed right away or if I'm too healthy. They take into account quality of life, what you used to be able to do and what you do now. I feel like an ideal candidate because I'm strong at the moment and I'm extremely compliant. I'm also in a good place mentally, when haven't I been?

Well that's about all the transplant news I have for now. I'm just sitting and waiting.

In other news flu shots are out! I'm going to Rite Aid to get mine today. Walgreens has the mist in, so I'll be getting that for Tom and Abby after my meeting with their teacher. I'm anxious to meet with Mr. S. to find out what accommodations he can give to Abby for her learning disability. Hopefully she'll be tested at Sacramento State soon. Once they start up school there they have this class/program that tests any child on the waiting list for just $200. I can't wait to have that paper in my hand to finally prove she is dyslexic. I know in my heart that she just needs different ways to learn. I hope the school can provide that.

In other other news this morning Tom kicked butt in his tournament this weekend. He shut out 3 halves in goal during the first two games on Saturday. No goals scored against. Then On Sunday he did pretty well. He wasn't pleased because we lost the first game. But he got all jazzed for the second game. He said, "Mom, I have lots of energy, I want to play the field." So Coach put him in as forward and in 104 degree temperatures he sprinted his heart out, stealing the ball, dribbling through defense and assisting one goal and scoring another. We creamed the team about 7-1. It was the same team we played in the morning. Having Tom out there made a huge difference and having the boys out for revenge also played a huge role. In the end we got third place in the tournament out of 6 in our bracket. Not bad! Tom was SO PLEASED! And I was a very very proud mama.

Thursday, August 08, 2013

Dear World,

Dear World,

It has come to the attention of my medical team that I am indeed at end stage CF. I've had quite a startling drop in lung function in just 7 months. My new normal is around 30%. I keep walking around the house thinking, "This is what dying feels like? But I feel so normal."

Yes, this is what dying feels like. When your life is consumed by eating, sleeping, treatments, tubes, cords, IVs, and lots and lots of oxygen tubing to trip over.

In my small little house we've set up two compressors. I finally bit the bullet and bought a second one, a Sequal Eclipse with AutoSAT technology, as it says so on the box, so I can keep traveling over night, as long as my needs don't exceed 3LPM. When Paul signed for the package, for the first time ever, the UPS man commented on the delivery. He said, "Here's some kind of satellite."  Paul didn't correct him, as the UPS man was 10 brown boot steps from the door by then.

The oxygen helps me keep my breath and I notice I can yell louder to the kids or my husband when they're not in my room and I desperately don't want to get up for the bazillionth time and drag my tubing behind me getting caught up every two feet on something in my way. It also helps lower my heart rate. Even when my lung function was good, around 42% and life was hard, really hard, because I was keeping up with the Jones', my resting heart rate was really high.  It went from 80-90 to 110-120. And when I do stuff it's in the 140's and 150's.

Apparently there are only so many beats to a heart and then you die. So we are doing oxygen therapy so my heart, which is currently in good shape, just high, the oxygen slows it down by about 10-30 beats per minute. So as I sit here typing to you, my HR is 98bpm, vs over 120. That's good news! The oxygen is working.

So this is what dying feels like. I'm not in any pain at the moment. I'm not even short of breath really. But I feel tethered to my oxygen and I can only stay awake for so many hours before I collapse in a puddle of nap goodness on my bed. I can honestly say I have felt worse, way worse, many times before. My doctor seems pretty certain that I'm ready for transplant evaluation. I never thought I would be here at the age of 37, when at the end of December, I finished IVs, I was 36 years old and my lung function (FEV1) was 42%. I've never taken a steep dive like this, and it's all been because I have been hit by two viruses, one strong in January, one weak in June, and extremely pan resistant pseudomonas aeruginosa filling my lungs.

My kids are handling the new tubes great. They are always asking me if there's something they can do for me. I love that. I think they just like the fact that I have no energy to watch them so they are watching TV all day. That will end soon, as school starts on Monday!

I once heard a startling fact on the internets, so you know it must be true. 50% of CFers die before they reach age 37. This is a fact in 2013. But the startling fact was 5% of CFers live to be 40. When I was feeling "so good" at 36, but life was hard, so hard, I had calculated that I had 8 years before transplant evaluation. I have always ALWAYS declined at a steady rate. I have classic Cystic Fibrosis. Not this year. Not when I'm past the median age. Not when I've been kicked down by one too many viruses. Just colds. Maybe a flu in there. Who knows. If all goes according to plan, I hope to be transplanted in the next 2 years and then maybe I'll live for at least 10 more.

I'll leave you with happy faces from last night. Aren't they beautiful? Paul and I made those!

Wednesday, July 31, 2013

Swimming, swimming, swimming, just keep swimming!

DSC_7538Here is a group shot of a bunch of my family that got together at Uncle Mike's for some smoked brisket and lots of swimming while I was in the hospital. I know the twins had SO MUCH FUN swimming 8 hours a day and playing with their cousins. Can't wait to see everyone again. (Click on the photo to view the entire image)

Wednesday, May 22, 2013

Tom and Abby: Then and Now

Questions answered about me, by my 4 year old twins in March 2009, and again when they were 8 years old in May 2013. 

1. What is something mom always says to you?

March 2009 TOM: "I love you."
May 2013 TOM: "Mmm." *laugh* "I love you so much?"

March 2009 ABBY: "Hurry up."
May 2013 ABBY: "Um,......... I love you?"

2. What makes mom happy?

March 2009 TOM: "By doing her a favor"
May 2013 TOM: long pause...pulling at chin.... "hmmm....." *shurgs shoulders* "I can't explain it. I know what makes you happy. I just can't put it in words."

March 2009 ABBY: "If we clean up."
May 2013 ABBY: "Doing what she likes."

3. What makes mom sad?

March 2009 TOM: "When all the time that I hit her.
May 2013 TOM: "Not listening." under his breath..."Definitely!"

March 2009 ABBY: "If we don't clean up."
May 2013 ABBY: "Doing what mom doesn't like."

4. How does your mom make you laugh?

March 2009 TOM: "By telling me a joke."
May 2013 TOM: "Ummmm.... I don't know, I can't put that one into words either. Making me laugh? Kinda hearing you laugh. I don't know why but it kinda does."

March 2009 ABBY: "By doing a funny word."
May 2013 ABBY: "She says funny things."

5. What was your mom like as a child?

March 2009 TOM: "A kid like me."
May 2013 TOM: *deep breath* "Tiny?" *big laugh*

March 2009 ABBY: "I don't know."
May 2013 ABBY: "Mmmmmmm Hmmmmmm.......Patient."

6.How old is mom?

March 2009 TOM: "I don't know that one. That's too hard for me."
May 2013 TOM: "Oh." *hand to mouth* "Thirty-something....37?"

March 2009 ABBY: "13"
May 2013 ABBY: *laughs* ...pause, "Uh 32?"

7. How tall is your mom?

March 2009 TOM: "Pretty tall."
May 2013 TOM: "Five foot four I think. I actually think that.

March 2009 ABBY: "As big as the curtains."
May 2013 ABBY: "5 feet."

8. What is her favorite thing to do?

March 2009 TOM: "Watch TV"
May 2013 TOM: "Go on Facebook and type." *laughs* "I wouldn't know what that was when I was four. That probably was not my answer. Of course I didn't know what facebook was back then."

March 2009 ABBY: "Type."
May 2013 ABBY: "Spend time with her family.

9. What does your mom do when you're not around?

March 2009 TOM: "Can it be when she's sick and we're not around or can it be when she's not sick and we're not around? She lies in bed when she's sick and we're not here."
May 2013 TOM: "Shop and type."

March 2009 ABBY: "She stays home."

May 2013 ABBY: "Try and amuse herself without me."

10. If your mom becomes famous, what will it be for?

March 2009 TOM: "We don't know."
May 2013 TOM: "What will it be for? Like what would you be famous about? Um.... *long pause* "Maybe typing the most words in a minute. What was my answer when I was four?"

March 2009 ABBY: "She'll be so beautiful."
May 2013 ABBY: "Eh, can you repeat that?.... hmmm..." *long pause* "For really having expression in things!"

11. What is your mom really good at?

March 2009 TOM: "That's a good question."
May 2013 TOM: "Really good at? Hmmmmmm You're really good at..." *belly laugh* "Shopping, washing the dishes, typing, and doing the laundry. Four things."

March 2009 ABBY: "Writing our names."
May 2013 ABBY: "Taking care of me."

12. What is your mom not very good at?

March 2009 TOM: "I know! I know! I know! She's not very good at changing the clocks or watches."
May 2013 TOM: "Not very good at? Ummmmm... what are you not very good at? Figuring stuff out on the computer when you think it's broken down. Oh wait, you're also very good at breaking computers cause one time dad said, "Oh, I've never seen this before." on a computer that dad used every day!"

March 2009 ABBY: "Writing Dad's name."
May 2013 ABBY: "Running."

13. What does your mom do for her job?

March 2009 TOM: *laughs* "She doesn't do jobs! Does she?"
May 2013 TOM *gulp* "Write gulp....and you typed write gulp, right? Um, what was the question? Uh, you don't really have a job. But other than that, take care of us."

March 2009 ABBY: "She does her machines."
May 2013 ABBY: *laughs* ...pause.... "Stay at home."

14. What is your mom's favorite food?

March 2009 TOM: "Oh. I think I know. I can't tell. I don't know."
May 2013 TOM: "Mmmmm that's a tough one. Mashed potatoes? Not quite sure on that one."

March 2009 ABBY: "Burrito."
May 2013 ABBY: "Hmmm...." pause..."Hmmmm.... I don't know."

15. What makes you proud of your mom?

March 2009 TOM: "When she does something nice for me."
May 2013 TOM: "If she figures out something that made her computer broken."

March 2009 ABBY: "If she does nice things for us."
May 2013 ABBY: "For how much she does for us."

16. If your mom were a cartoon character, who would she be?

March 2009 TOM: "A mom."
May 2013 TOM: "The typewriter guy. Somebody that just works the typewriter. I'm thinking old fashioned here."

March 2009 ABBY: "Bob the Builder."
May 2013 ABBY: "Hmmmm." pause... "Hmmmmmm." *swivels in desk chair*  "I can't see her being anyone. Hmph."

17. What do you and your mom do together?

March 2009 TOM: "You mean, her and me and Abby do together? I think I know this one. We go to the park a lot of times."
May 2013 TOM: "This one's definitely going to be different than Abby's (answer). It might be watch movies? What did Abby put?"

March 2009 ABBY: "Ask questions together."
May 2013 ABBY: "Shopping!"

18. How are you and your mom the same?

March 2009 TOM: "No."
May 2013 TOM "Hmmm We both like math, we both have blue eyes. Hmmm. Well, hmmm" *tilts head* "We kinda have the same sense of humor. Kinda."

March 2009 ABBY: "Because we have the same toothbrushes."
May 2013 ABBY: *huge smile* long pause... "We like some of the same things."

19. How are you and your mom different?
March 2009 TOM: "Cause we wear different clothes. She doesn't wear small clothes. She wears big clothes. And I don't wear big clothes. I wear small clothes. That's a long answer, huh?"
May 2013 TOM: "She's got a different color hair and... she's older." *laughs* "That's probably not what Abby put."

March 2009 ABBY: "Because she's big and I'm mostly as big as her."
May 2013 ABBY: "We don't like some of things that each other likes."

20. How do you know your mom loves you?

March 2009 TOM: "Cause she has a heart in her tummy."
May 2013 TOM: "She says it a lot and I have a feeling she really does."

March 2009 ABBY: "Because she does nice things for me."
May 2013 ABBY: *smile* "Because she says she does every day and she shows that she does every day."

21. Where is your mom's favorite place to go?

March 2009 TOM: "I think i know." *jumps up and down* "To the store! That's a good one, huh?"
May 2013 TOM: "PF Chang's. You like it there."

March 2009 ABBY: "To Teriyaki."
May 2013 ABBY: long pause... "I don't know."

22. The best things your mom cooks?

March 2009 TOM: "Oh, I know. Yummy, yummy, yummy!" *rubs belly* "Duck Toast." (note: duck toast is cinnamon and sugar toast cut in the shape of a duck with a cookie cutter.)
May 2013 TOM: (having been told how he answered 4 years ago... ) *rubs belly in circles* "Yummy yummy bread." (this time it's just plain bread and butter)

March 2009 ABBY: "PB&J"
May 2013 ABBY: "Hamburger Helper."

Monday, April 08, 2013

Rhi, Kelly and Meg

Three of my friends died this winter. All three were really unexpected.

Rhiannon and I were pretty close. I helped her plan her wedding 3 years ago. She was brilliant academically and especially enjoyed philosophy. She went in for a routine tune up at the end of November and she was on life support by mid December. She was a fighter to the end and went out on her terms. No plug had to be pulled. Her body just had enough. I think Rhi was able to donate her corneas, as cystics we all believe in recycling ourselves.

Rhiannon Thomson
November 17, 1977- December 17, 2012

Kelly and I never met in person. I had so many trips to Southern California in the time that I "knew" her, I thought of her every time we passed Topanga Canyon, where she lived. Kelly was a gifted photographer and just starting a wedding photography business. She was listed for a double lung transplant. She got her call but the lungs were too big and not only did they not fit properly, they failed to inflate properly. She died from a stroke while on an ECMO machine on January 1, 2013. A giver to the end, this ECMO machine enabled her to donate her liver and both her kidneys. 

Kelly Langs
February 6, 1974-January 1, 2013

Meg and I became fast friends after she learned she was pregnant in 2011. We talked about pregnancy and after her son was born we talked about babies. She worked so hard on her lung health because she wanted to be here for her son. He turned 1 in February 2013. In the middle of March Meg battled something all of us cystics dread, DIOS, or distal intestinal obstruction syndrome. Basically a bowel blockage from too much mucus in the bowels to let our food pass normally. Everything gets stuck, nothing comes out and it is more painful than birthing a baby.  I battled DIOS about two years ago. It landed me in the hospital for three days and from start to finish it was about 10 days of agony. In Meg's case she eventually had to have bowel surgery but died from perotinitis. Meg was a young single mother and if you'd like to donate to her son's trust I have that information. I think the single best last post on facebook from her friends and family, obviously at her direction was, "Tag your (sic) it. I'll save you a seat."  That's so going on my tombstone. Thanks, Meg.

Meggan Moore
May 7, 1988- March 26, 2013

Saturday, March 30, 2013

RIP Dear Old Dad

14 years ago today my dad died. It still makes me sad that he's not here to see the twins grow up.

Anyone who knew me in high school probably knew this tid bit about my dad and might have even been subjected to this by my father. After I made this video the family got home and we all sat down and watched the clip again. I'm surprised my neighbors have not called the cops. It's really loud and awesome.

The video seems dark and gloomy at second glance, but it's not meant to be. The sun was going down and the images on the television are better without lights on in the room.

In memory of memory of my dear old dad, Jeremiah Aloysius Linehan Jr. September 13, 1943 - March 30, 1999.

The effect of the surround sound and sub woofer are totally lost on this clip but I guess you'll have to come over and see for yourself. It's pretty awesome.

Monday, March 25, 2013

Pre-Easter Brunch

We had an usually busy weekend.

Fist we had a lazy Saturday morning, just the way I like it. I haven't been sleeping well (thank you Cipro insomnia) so I get about 4 hours and then I toss and turn the rest of the night. I like to try and get a nap in before lunch so I can handle the rest of the day but that usually means I'm not showered and ready to go anywhere before 2pm.

Tom's game was at 3:00pm on Saturday. His first game in competitive soccer. We were clearly out matched as most of their kid are as tall as Tom, or taller and most of our kids are smaller than Abby! Yes, Tom plays with mostly 6 year olds in their first year of soccer. They are by far the most talented six year olds I have ever seen, but they don't match up to 8 year olds, that's for sure.

For the second half Tom was put in goalie. I think he likes the challenge there, especially when we have poor defense and a strong opponent. It gives him a lot to do!

Poor guy had to suffer through his first PK though. He did an amazing job, which kinda proves the reflexes of an 8 year old vs an adult really are different. Basically during a penalty kick, it's just the goalie and the kicker head on. The goalie chooses to lean to the left or lean to the right. Well Tom was able to read the ball was going to his right, so he got that part, he just barely missed swatting that shot from going in though. Breaks my heart. I don't think he minds though. Here's the awesome sequence of photography events Paul took during the shot.

On Sunday we had Easter brunch at the Shaws house. We all brought eggs for the hunt and the kids were eager to go! After being stuffed with french toast casserole, fruit salad and m&m pancakes they were ready to hunt for eggs! Here's a (quick) shot that lasted about 5 minutes, three cameras and lots of "say cheese". It's the best we got.

Here they are in age order:
Tom 8.5y, Abby 8.5y, Ian 7.5 y, Ryan 4.5 y, Lexie 4.5y, Tyler 3y, Dylan 5mo

We were missing Lexi's sibling, Andrew who is 1. But other than that, a complete head count! Now that we all have two kids the get togethers get even more rambunctious. 

Happy Easter!  I hope the bunny brings you happiness! (chocolate! and more chocolate!)

Sunday, February 10, 2013

Family Reunion

What's more fun than a nightly family reunion at the dinner table?

A family reunion with matching t-shirts of course!

Tom and Abby love their shirts so much I've washed them twice this week already. And before you ask, no, I did not have them specially printed just for us. They come from the good old USA community of Telford, Tennessee!

Thursday, February 07, 2013

My Dog Has OCD Too

It's no secret that I'm obsessive about certain things. I've passed this trait onto my son. We're obsessive about numbers, and timing, and matching, and order. All sorts of things. Now my dog has it too.

After dinner we rinse our plates and place them in the dishwasher. Queue "plate time." This is when Orion comes to the dishwasher to lick the plates clean, incase we didn't rinse them all the way. If there is a lag time between the time we put our forks down and plate time the dog starts to get anxious. He paces and barks. This is probably the point where we should discipline him, put him on his bed, and make him stay there. Nope, that's not what we do. We oblige and move onto plate time.

Well tonight it was just Abby and me. Orion barked and paced, we let him in and out of the house, then he barked and paced again. Abby said, "it's plate time!" And so it was. Then I sat back down at the table while Abby finished some fruit and cookies. Orion then barked and paced and we let him in and out of the house but he barked and paced again. I'm thinking, what in the world?

It was time to do the dishes. He could smell the dinner still on the stove. He knew I wasn't doing things in the right order. I was supposed to be cleaning dishes. He wasn't happy until I did. Then when I was all done it's time to follow me to my room for treatment time, which is what I'm doing now. This is when Orion pretty much settles down for the night. He lays on the floor next to the bed and I kick him out around 9pm when I go to bed.

So I've managed to give my dog OCD. He does the same things at the same time of day, same as me. *sigh*

In other news, I'm starting to feel like myself this week.  When I talked to my mom earlier this week she apologized profusely saying, she hadn't been praying hard enough for me and that's why maybe I'd been sick so long so she was going to start praying for me a lot. I guess we'll call this one Catholic guilt.

Well, I don't know what happened but this week I finally started feeling more like myself. I did laundry. I made beds. I took showers and washed my hair. It's still hard to do everything because my lung function is so low, I'm still getting fevers every now and then, but I don't feel very sick. Just don't ask me to talk and walk at the same time. Hardest task EVAR!   Even worse than toweling off after the shower or making the bed in the morning. Yeah, it's that bad.

Thursday, January 31, 2013

Out with the PICC!

Today I had a visit with my doctor. It's the first in 10 days, since he was on vacation, and 10 days since we discontinued the IV antibiotics.

I had blood drawn on Monday and I got the results today. My blood work looks much better, my white cells are way down out of crazy highs and even my eosinophils went dramatically down. All my many tests for fungus came back negative and I'm not culturing any new bacteria in my lungs. My doctor is calling this one serum sickness so even though my lung function has not recovered and I remain currently at 37% (lower airways at 15%) we are calling it a day and the PICC line was pulled.

My hope is that in the next month I can continue to hibernate and sleep a lot (my iron is way low) and stay away from viruses. My fevers have finally given up after 30 days. Whew! That was a lot of days. So I think the virus is gone. At first we suspected Epstein Barr Virus, but that was ruled out with later blood work. Although I did learn that I have had EBV in the past. I wonder when that was? I've been chronically tired for nearly two decades, so I can only imagine at which point I contracted EBV from god knows where.

My whole house seems to have escaped whatever plagued me for so long. I will continue my arduous lineup of treatments every day and I start Cayston in the morning. (Not my favorite but at least it's quick and painless.)  I hope my lung function eventually recovers. It reminds me of the epic IV battle during the same time of year in 2006, my 30th birthday no less. I had 7 weeks of IVs and finally we just pulled the plug and threw our hands up in the air. Sometimes less is more I guess. We'll see.

Tuesday, January 15, 2013

Future Star?

Tom begrudgingly tried out for a select soccer team. Actually the try outs were for a particular football club called FC Elk Grove. From the try outs they pick you for their competitive teams (both A and B teams) and select teams (I'm not sure if there are A and B select teams).

Competitive soccer is "year round" from March to November. That can't be right because it's 10 months long, but anyway, you get the idea. I'm new to this!

I kinda wish he would have made a select team. It's cheaper and the season is shorter. But they like to take the talented players to the competitive teams so he made the U9 Boys Competitive FC Elk Grove team for the 2013 season. The first 3-6 weeks of practice will determine if he is placed on the A team or the B team. There's no difference in price really and when all is said and done I expect we will have shelled out nearly $2K for the season but the A and B teams do play in different tournaments depending on the club's decisions. It's my understanding the B team might not play in as many games or tournaments or something.

Anyway, a congratulations to Tom. I'm VERY proud of him and I know he's quite talented.

He's actually quite upset that he made the team which sounds funny. His recreational soccer team, which he has played with for 3 years, is breaking up. At least three of the boys are going comp/select but they are a year older and they play U10.  Tom has always "played up" a year so this is hard on him.  Now he's the oldest in the class.

I know another boy not coming back next year and neither coach is coming back either. So it's a bit like changing schools for him. New coaches no matter where he goes, new teammates. This little mama's boy does not like change, but I know after a month of practices, heck, after a week of practices, he will be loving his new teammates. Being one of the biggest and one of the oldest on the team might make him one of the more experienced. Not for long, I'm sure. This is a good club and I hope they are great teachers.  This will all be new and all very interesting as it unfolds this year.