Tara K. Telford Graduate Student Award 2016-2017

The 2016-2017 UC Davis Tara K. Telford Graduate Student Award went to a very lovely young man pursuing a Ph. D. in Chemistry at UC Davis named Jackson. Below is a short biography he wrote about himself:

"I grew up in poverty in a single parent home in Oakland, one of the most dangerous cities in the U.S. I needed to take student loans every year to support me and my dad for the past eight years. Due to the strong financial position that Telford award put me in, this is the first year ever that I was able to 'decline' my student loan package. To be recognized with this fellowship at such an early stage of my own doctoral training means a great deal. 

Thank you for believing in me!"

Here is a brief summary of Jackson's research:

Jackson has continued his research in the lab of Dr. Kurth, where the research focus is on cystic fibrosis (CF) a highly lethal genetic disease affecting about 70,000 individuals worldwide, with about 1,000 new diagnoses per year. CF is caused by the misfolding of the cystic fibrosis transmembrane conductance regulator (CFTR), a transmembrane protein ion channel responsible for the transportation of chloride ions. This misfolding is due to mutations to the CFTR gene alleles, and the most common mutation is a single codon deletion, F508_del. CF causes a thick buildup of mucus on the lungs and causes them to be inflamed due to reduced airway surface liquids (ASL), and some opportunistic pathogens thrive in this type of environment - bacterial infection is one of the main causes of death among CF patients. 

Jackson's research focuses on a protein ion channel called pendrin (PDS). The reduced activity of this protein is associated with reduced lung inflammation, pathology and hyperreactivity. Furthermore, inhibition of this protein increases the ASL volume by a significant amount.  Through the potent molecules and chemical probes Jackson developed for these protein targets, he wants to bring hope to the community by showcasing the active research related to these rare diseases. 

The above information was provided by UC Davis at the annual luncheon with the award winning graduate student in Dr. Mark Kurth's chemistry laboratory. 

If you would like to donate to the Tara K. Telford Graduate Student Award please visit this link:

Tara K Telford Graduate Student Award

If you would prefer to send a check please click here, and scroll down to the second page. 

Thank you to all my friends, family, and friends of friends that continue to support CF research year after year! 

Terrible Twos All Over Again

Yesterday I took Tom and Abby to their annual physical with their pediatrician. They both have perfect vision and perfect health. Isn't it amazing that someone so sick, like me, can have these strong beautiful children?

At 11 years old + 1 month, Tom clocked in at 90 pounds and 4'9.25". That puts him at the 70th percentile for weight and the 50th percentile for height.  That is exactly the average height for an 11 year old and exactly the average weight for a 12 year old. Since last year he's gained 3 pounds and grown about 1.5".

At 11 years old + 1 month Abby clocked in at 55 pounds and 4'5.25".  That puts her not even on the chart for weight and the 10th percentile for height. She is exactly the average weight of an 8.5 year old and the average height of a 9 year old.  Since last year she has lost 3 pounds and grown about 1.5". To be honest, she was almost 60 pounds a little over a week ago, but she lost 5 pounds after not being able to eat for three days last week.  She had a fever and nothing sounded good.  She's been eating great and fully recovered since Thursday, but even 5 days of eating great has not lead to one ounce of weight gain. The doctor is not concerned at all. She will just always be my little peanut.

All day yesterday I thought I was taking my 11 year olds to their physical. I didn't tell them I was going to let the nurses give them a shot. Once Tom found out, he leapt off the examination table and ran around it to the corner to hide. He immediately started crying and we weren't even due to give the shots for another 20 minutes, until after the doctor did his examination. Oh, he sobbed all the way through the appointment and then when the nurse came in with the shots he completely melted down sobbing and screaming. I honestly thought, who is this kid? Is he two, or is he eleven?

I ended up holding him on my lap while Abby climbed on the exam table and received her flu mist and meningitis vaccine like a cool, calm, and collected adult.

When it was Tom's turn he was still on my lap and we were getting sweaty together and he was so upset his body temperature was rising and he started sweating, which made me sweat. I held him tight while they did the flu mist and he complained and sniffed and screamed and cried and sobbed and sobbed. Then when it came time to prep his arm for the vaccine he freaked out. The nurse explained it's just a cotton ball, there's no needle. No needle don't care, he was upset! Trying to hold him still was near impossible. When the shot came out and it was time for the injection he screamed at the top of his lungs "Wait! Wait! Wait! Let me relax my arm!" sob sob sob sob shrieking again, "Wait!".  Well the nurse found her opening and just went for it and it was done.

The whole incident reminds me of taking him for his first haircut at the barber. We both ended up in puddles of sweat and he was crying the whole time.

I'll have you know, he did recover rather quickly and I don't think he had any pain in his arm after the shot because he was acting completely himself. I took him to one of his favorite lunch spots in downtown Sacramento and that was the end of that.

We still have to get the Guradasil vaccine and that one is a 3 shot series over 6 months. I asked him if it would help if he picked out the date and time for those shots. We'll see if that approach works better than the "Surprise! It's shot time!"  I thought not telling him would be better, as that's how I've always done it in the past. Otherwise he'd be dreading it for the days leading up to the appointment. We could have started the Guradasil  yesterday, but I decided two vaccines in one day was enough. So we'll start it maybe later this month.

Telford Twins Turn Eleven!

I say my heart split into three pieces on this day in 2004. Two of those pieces walk around outside my body, inside their own, they are my precious twins, Tom and Abby. Today they are 11 years old.

ELEVEN! We are officially tweens. Tom spends his hours after school at his (girl) friend's house. She's not his girlfriend but she is a friend that is a girl and he sure spends a lot of time with her. Abby spends her evenings texting her besties.

They still do a lot of things together, but they do a lot of things on their own too. They are the lights of my life. And they are really amazing.

This morning they opened some gifts on my bed before they went to school. Tom got a remote control  Millennium Falcon and some PEZ he had his eye on at the convention last February. Abby got some cute clothes and a ring with a purple stone in the shape of a heart, one of her favorite colors!

They came home from school with no homework. This is really unusual for Monday-Thursday, an no quizzes or tests tomorrow. So we can celebrate birthday day all night long.

Here are some pics of my grow(ing) up babies!

The Birthday Week Begins!

This is a big week for our little family. The Telford Twins turn 11 years old so soon! Too soon! They re growing up so fast. I love them to death.

They both got amazing progress reports from school today. They are on track to be on the honor roll, which will be a first for Abby since she was eligible since the third grade (when they start getting letter grades.) She has all A's and one B. I'm so proud! Tom has the same, but a B, in a different subject. I'm so proud of both of them. They've been working hard and they have a fabulous teacher this year that is teaching independence and getting them ready for the rigors of Junior High next year. Did I say I was proud of my kids? So proud.

Unrelated, I had a root canal today. They had to shoot me up four times to get me numb enough for the procedure. My usual is 5 times, so I guess this guy was good! I had no pain during the procedure and I'm still numb, so I guess I will have to wait and see if I have any jaw pain from the shots or from keeping my mouth open for 90 minutes while they worked and filed away. This will hopefully cure my toothache that I've had since my dentist put on a new crown in March this year. It's been 7 months and I finally had enough. I couldn't chew food on the right side the whole 7 months. My dentist explained that my tooth was dying inside and a root canal would fix my pain. I've had a successful root canal before so I'm hoping this one is a success as well. I was a little tense for the procedure but my blood pressure was good, considering how tense I was, 117/77. I took some tramadol and ativan before the procedure to take the nervous bugs out of my stomach. It seemed to work. I think I would have had a death grip on the endodontist's chair if I hadn't taken those anti-anxiety and pain meds first.

Well, this week is starting off well with a lunar eclipse of a super moon last night and ending with birthday celebrations. I can't wait until the twins see what we bought for them. I hope they like their gifts. It's always a surprise! Even though, I keep wishlists on Amazon for them for the rest of the family.

I plan to keep this blog more regularly updated. That is my plan. We will see if it comes to fruition. Wish me luck!

#TeamTelford
#ThinkPinkLungs
#TPL

Do Curses Really Come in Threes? You Bet!

Tom had a terrible day yesterday.

The first curse.

We had to leave around 10AM to get to Tom's soccer tournament on Sunday. Around 9:45AM, Paul asked Tom to put Mozzi outside. Instead of putting Mozzi outside he decided to throw one of her toys, a 12" squeaking rubber chicken, over the back of the couch toward the kitchen. The rubber chicken flew across the kitchen table and like a bad game of Shuffleboard, the chicken cruised across the kitchen table, knocked the glass salt shaker down and off the table sending it crashing to the floor in glassy bits. And the salt, well, it was everywhere.

Tom immediately broke down in tears. He knew I had just purchased these salt and pepper shakers for Paul in May. They had elephants on top of them. We had just celebrated 14 years of marriage and the 14 year gift is ivory. Since hunting elephants for game/tusks is illegal, I did my best to play along with the elephant theme. Tom especially likes these shakers for some reason. We asked him to get the broom, dust pan, and small vacuum so Paul could clean up the mess before we left. I was thinking well, maybe I'll be buying a new set soon.

The second curse.

We were home from the soccer tournament around 3:30PM. Paul went out to run errands and grocery shop for the week. Tom and Abby were doing the usual, watching Youtube or Netflix on their iPads. Note: The twins don't actually own the iPads. They are the family iPads, but Tom has taken over the iPad Air and Abby has taken over the other one, not sure of the generation.

Around 4PM Tom comes running into my room hysterically crying, tosses the iPad onto my bed and crumbles onto the floor. The screen, well it was shattered to bits. He was walking into the kitchen, which has a tile floor, and he dropped the iPad onto the floor. Could have happened to anyone but since these kids are so careless and walk around with this expensive technology like it's attached to them all day long, it was bound to happen sooner or later.  The screen was shattered so bad that we eventually decided it shouldn't be used because as we kept using it throughout the day, we were losing shards of glass. It just wasn't safe. Replacement cost $300 minimum. Considering the cost of a new iPad is about $449, it's not worth it. I was thinking, well, maybe we'll be buying a new iPad soon. A little pit in my stomach for the cost of that one.

The third curse.

Around 6PM Tom was on the broken iPad, Facetiming his friend, while using the iMac (read very large expensive computer) for Minecraft. Suddenly there was a crash and I hear Tom say, "I have to go." He ran out of the den, to his room. Paul and I walked into the den to find the computer had been pushed off the desk, onto the carpeted floor. Paul called Tom back into the den to find out how this could have happened. He said he was playing Minecraft and he pushed the computer off the back of the desk. First of all, why was he touching the computer screen? We've asked the him repeatedly not to touch computer screens. Alas, he is 10 years old and he just doesn't think before he does these things.  The back case of the computer is bent, which would need to be replaced, and the screen is shattered, which would also need to be replaced. It will cost a lot of money is not worth the replacement costs. I was thinking, well, maybe we'll be buying a new computer before we planned to upgrade in March next year. Gulp. Another pit in the stomach.

So how does one kid destroy thousands of dollars worth of equipment in one day? It's easier than you think.

I talked to Tom last night and told him Dad and I decided he is on technology restriction, except for homework. He cannot use his iPod, any iPad, or the computer for two weeks. He's not allowed to watch Youtube or Netflix on any of the TV's either. He can watch regular TV. He's taking it pretty well. I feel bad for reprimanding him but we're hoping he can learn from this and have some respect for any and all of his or our property.

So yeah, I think the curses do come in threes. I hope we're done, for now. Not to mention, all of this happened after we decided, the day before, it's time to replace our washer and dryer. We're going to be bleeding money around here for awhile. What's that saying? It's only money and you can't take it with you. At least we all have our health! (Some more than others. Heh.)

My First Dry Run

Hello Family and Friends,

I wanted to give a more complete update about the last 24 hours and the whirlwind we like to call a “dry run.”  

I got the call at 1:42AM and without asking too many questions I said, “Yes!” to accepting the lungs. They were from a young(er) male, known IV drug user and he had tattoos, this made him “high risk.” I tried to get more information about his age and where he was from but no one would give me that many details. I do know he was from out of my region. The west coast region is very large. I know Stanford sent a team of doctors and residents on a plane to determine if the lungs were satisfactory. After initial tests pointed to yes, further tests gave more and more disappointing results that could have resulted in me being hospitalized with sub-par lungs for months and maybe recover, maybe not. They recommended I not take the lungs and I respect the doctors at Stanford so I agreed. In reality, I don’t think I had a choice.

What a dry run looks like:

We arrived to what seemed like an empty hospital at 5AM on Saturday morning. No one on the phone told me where to go. I asked if I was to use the main entrance and he said yes. So I did, but no one was there.  I walked and walked around until I found somebody in the emergency department. They were able to look my name up and see that I was supposed to go to the area of the hospital called C1, which is a hall of rooms specifically designed for pre-op, and post-op, if you’re going home the same day. That would not be my case, of course, if I had the surgery. I would have been headed to the North ICU. 

I put on a hospital gown immediately and was asked my allergies to medications and asked for a list of my medications. There was a lot of confusion about drawing my blood, as I told them I have a medical port-a-catheter implanted in my chest for a reason, they are going to have to draw the blood from there. I knew it would be a lot, and they wanted to place a regular peripheral IV instead. I insisted they access my port first. It turned out to be a good thing. 

The Fellow Cardiothorasic Surgeon assisting in my operation was Dr. Choi. He came to talk to me and had me sign consent forms. He said he’d be operating with the attending doctor, Dr. Ha. I had never met either surgeon, and never did get a chance to meet with Dr. Ha in the operating room. After taking my blood and doing some usual things like an EKG (testing my heart) and a skin check to check for redness or wounds all over my body they raced me in a wheel chair down to xray, because the OR was ready for me. 

We got to xray and they had to call someone because we couldn’t find anyone. It was still so early in the morning. After the xray, some of the OR staff picked me up in my wheelchair and I was raced to the OR. They brought me into the OR and gave me some drugs to relax me. Me, being me, the drugs didn’t do anything. We have a theory that because I’m a redhead I need to be knocked out like a heavyweight champion. So they gave me some more drugs and that made things a little floaty for awhile. That’s when they got started on my arterial line. I’ve had many arterial blood gases but this is an IV line directly into an artery (not a vein) in my wrist. It’s a very sensitive area, but thank god, they do numb me first. 

The anesthesiologist used ultrasound guidance to try and find a vein for my IV (the one they wanted to put in earlier).  Even with the ultrasound she had a really hard time but she was able to do it in about 30 minutes. Then it was hurry up and wait. I waited and waited, they turned on music for me. They didn’t want to put me to sleep until they were sure the lungs were on the way. 

After about 2 hours, around 9AM, we were told the lungs were not suitable for transplant and I was going to be going home. I went to recovery for about an hour, where they fed me some crackers and juice because my blood sugar was a little low, and they did more tests. My blood pressure was really low, but that’s normal for me after having narcotics in my veins. I wasn’t dizzy at all, so they removed all my lines, flushed my port, and led Paul to the room with my clothes so I could get dressed. I was escorted out around 10AM and we stopped to eat after that whirlwind of an 8 hour morning we just had. 

We got home around 1:30PM to find my mom had finished all the laundry from Paul and the twins’ trip to the UK. What a super mom! Paul and I drew the shades in our room and passed out for three hours. We were tired. 

But we are ready. We are ready for the next go, whenever that may be. 

I can’t thank my donor today, enough, and my donor’s family for making the choice to donate organs. What an amazing day it was. It just wasn’t my right “Breath Day.” 

#TPL

#Team Telford

Love,

Tara

Get Your T-shirts Now!

Paul and I have created a t-shirt so everyone can share the #TeamTelford spirit while I wait for my call for new lungs. I would love to see you and your families sporting our spirit wear across the globe!  The t-shirts are all white and I think there is a variety of styles to choose from. We chose to keep the price point low since you will be paying for shipping costs as well. We are not doing this to raise tons of money, we are doing this because you asked for this and it makes me happy to know I have the love and support of my family and friends all over the world. 

The shopping window is narrow. You must order your shirt within the next 10 days.  It takes about 2 weeks for domestic orders to be received and about 3 weeks for international orders to be received after the end of the campaign. Everyone should have their shirts by the end of April!  The last day to buy t-shirts is Wednesday, March 29, 2015. 


Don’t delay. Order now! 

http://teespring.com/teamtelford

Think Pink Lungs!

Love, 

Tara

Think Pink Lungs Love!

Team Telford is at it again. I got an awesome card from my cousin (a Telford!) via snail mail. I know, I know, snail mail is overrated right? Nope! It was perfect and unexpected and marvelous.

My first Think Pink Lungs support card. I'm thinking about starting a wall of love at home until I get my transplant. So if you're feeling inspired to send a card, I will gladly love it and add you to my wall of love.

Now for a health update. Well, I don't really have one. And that's a good thing. I feel stable. I'm tired a lot so I try and nap, sometimes it works, sometimes it doesn't. I watch a lot of movies and shows on TV and Netflix. Since the kids are home from school this month they promised to take me on my half mile walk every single day. We've made it most days, even when I didn't want to go. They even carry my oxygen tank for me, and bonus!, the dog gets a walk too.

Think Pink Lungs!
#TeamTelford

Start Your Engines!

And we're off to an amazing start on this Wednesday afternoon, March 4, 2015. Here is my update:

Hello Friends and family!

This sure was breaking news fast. My insurance approved the surgery and as of 2:30PM today, Wednesday, March 4, 2015 I am on the list for a double lung transplant with a Lung Allocation Score of 43.1389. That is a very competitive score. People get calls with scores this high. I’m a little shocked but I’m very excited. 

This is excellent news! We are on our way. 

Think Pink Lungs! 

Love, 

Tara

We're One Step Closer!

I sent out an email update about my road to getting onto the double lung transplant list at Stanford this morning. I will cut and paste it below so you can all follow along.

Hello Friends and Family,

I received a phone call from Stanford this morning. Yesterday, Monday, March 2, the team at Stanford decided I am a worthy candidate for their double lung transplant program and I have been accepted! 

Currently my Lung Allocation Score (LAS) is 35, which is a pretty moderate score for someone sitting at home doing as well as I am. Stanford has been performing many double lung transplants since January 1, 2015, almost one per week. One gentleman who was listed on January 23, 2015 got his lungs on February 23, 2015, one month later. The general caveat is, average wait time for lungs at Stanford is 9-12 months, but without saying so, the coordinator made an impression on me that I could end up with lungs sooner than 12 months from now.

People waiting for lungs in my geographic area only include people at Stanford and the University of California at San Francisco (UCSF).  On any given day there could be an average of 10-20 people in the O blood type (I am O+) waiting for lungs at these combined hospitals. The good news is, my lung cavity is of larger size than we thought, due to air trapping, giving me a bigger, what they call, barrel chest, from my sick CF lungs. This will open up offers from donors of “normal size” rather than waiting for lungs from a more petite donor because I have the room. Petite donors are more rare, but not impossible. 

The next step is insurance approval which takes anywhere between 7-10 business days. After the insurance approves the surgery I will be called and we will talk a little bit about my oxygen usage, as I’m using more than she calculated, and this will boost my LAS. I will send out another email once I am officially on the list for a double lung transplant at Stanford University Hospital. Right now we are still in a holding pattern and I am not on the list. 

This is great news today. Things are moving forward. I am very pleased. You heard it here first!

Think pink lungs!

Love, 

Tara

Health Update February 26, 2015

I sent a little email out to some friends and family. I thought I would post it here as well. Enjoy!

Hello Friends and Family,

As you know, I started the process for evaluation for a double lung transplant at Stanford Hospital in Palo Alto, CA in October 2013.  At my appointment in January this year, they decided I was in the transplant window. This last month has been a whirlwind of appointments and tests to complete the evaluation process and I’m happy to report I have passed all the tests!

I had an appointment at Stanford yesterday, February 25, and they are going to take my case to the team on Monday, March 2. This is when the surgeons, nurses, doctors, and a variety of other experts I’ve gotten to know over the last 18 months will decide if I’m a worthy candidate for a double lung transplant. If it’s a go, they will do the insurance approval process and hopefully I will be actively listed and waiting for new lungs by the middle of March. 

The average wait time in 9 months, but I know people that have waited longer and some that have waited shorter. I will be assigned a Lung Allocation Score and this is the score that places me in line on the list according to severity of my disease state. The numbers range from 0-100 and fluctuate based on my current condition. To take a guess, an average number for my disease state might be in the low 30’s. The higher the number, the higher on the list I go. However it doesn’t matter how high your number is if there are no lungs available for my size, blood type, and antibody screening, and so many other matching characteristics that come into play. 

I am very excited the team will be talking about me on Monday. My lung function was stable at my appointment yesterday at 0.78 Liters which is the equivalent of about 25% function.  

Think pink lungs!

Stabilized!

Things here at Sutter Memorial have stabilized. There is no more need to transfer me to Stanford during this hospital admission. I will be here at Sutter until Thursday, the 12th.

I have been taken off my second antibiotic today and will just be on one antibiotic to try and keep the kidneys and hemoglobin happy for the next 7 days. My hbg today was down from 2 days ago, but still a respectable 9.4.  My CRT (kidney function) is rising, slowly, 1.27 today. But that's a decent number for me.

I had a repeat echocardiogram last night and today the results were great! My ejection fraction was 55%, which I think is an acceptable number to move forward with transplant at Stanford. I still have to get a right heart cath, which they did not require on all patients before, but will require on all patients moving forward starting this month.

My doc wants me to do all future hospitalizations at Stanford, so that will be a treat and a half. Hopefully the next time I get sick the kids will be out of school and they can do some sight seeing and see me every day. That would be fun.

The radiology report came back on the lump in my breast and it's "not likely to be cancer". duh. It's been there for two decades. It's most likely a fibroadenoma, which is harmless.  So I will need a fine needle aspiration sometime soon to rule cancer out, to keep Stanford happy.

I'm not clear if I will need a MUGA scan on the heart, but that can be done locally in Sacramento if need be.

I'm feeling a little better this afternoon but that could be the Ultram talking. I came back from a trip downstairs (to do the fine needle aspiration, then to find out they don't do breast cysts at this hospital!) so I came back and I started getting a headache. I was nauseated too, from the IV meds, so I took some Ultram and compazine. Then 90 minutes later, no relief from the headache. Finally dawned on me, I turned around and my oxygen wasn't turned on! As soon as the o2 was turned back on, the headache disappeared. Whew!

I know so many people have so many questions and I hope this blog answers most of them. It's hard to get back to all my friends online individually so I will tweet this link out for your viewing pleasure.

Wild Medicine

I was feeling really crappy last weekend. The cold I first had symptoms on the 17th of January had finally caught onto my chest. My white cells were near 20K and my FEV1 was at an all time low of 22%.  I'm happy to report my white cells today are 8.9K, which is normal.

Wednesday, January 28, I was admitted to the hospital in Sacramento. They started my IV antibiotics and everything was going ok until my kidneys spiked a high creatinine score of 1.79 on Friday morning. We had to discontinue the antibiotics, thinking we would resume them on Monday morning.

My creatinine ended up going down to an acceptable level by Saturday evening, 1.4, so we were able to restart the antibiotics.

In the mean time, on Friday night, I had a scan on my kidneys to make sure they were ok. And the ultrasound came back good. Of course my 24 hour creatinine clearance test was awful, since I was on antibiotics and raising my creatinine when I did it. This is a 24 hour urine collection which showed my kidneys functioning at 59% of normal, which is stage III kidney disease. Nothing new but not exactly stellar news.

Let me back up to January 21 when I saw Stanford. They were ready to list me! They were going to take my case to the team the following Monday and ask that I be put on the double lung transplant list. BUT then I got a call on Thursday, January 22 saying no, they cannot list me until they figure out if my heart is failing. FAILING? My ejection fraction (EF) was 38% on my echocardiogram.

There are a few things to know about echocardiograms and end stage lung disease. First of all, an EF can be raised with the help of blood pressure type medications under the direction of a cardiologist. All of these drugs (a 4 combo) are nephrotoxic (kidney disease causing). So this is not a good option for me.

Also, echocardiograms on end stage lung disease patients are notoriously unreliable. Some transplant centers don't even use them at all. The bottom line is, we need to find out if my heart is failing or not. There is an MRI of the heart (MUGA scan) which is non-invasive. Now if that doesn't turn up good results the last resort is an angiogram, or right and left heart catheterization where they enter balloon dilations into the heart and test pressures. Unfortunately, this uses nephrotoxic dye!

BUT Stanford has talked to my pulmonary doctor and my doctor agrees that there is another way to have the angiogram with another medium, that is NOT nephrotoxic and that is safe for the kidneys and we should definitely use that one.

The reason we want to save the heart so bad and find out it is a good heart is because if you get listed for a double lung and heart transplant your waiting list score is driven by your heart disease (which I have very little, if none) and not by your lung disease (which I have a lot and could score decently high). So I could potentially end up dying from lung failure, waiting for a double lung heart transplant if that is the route we have to take.

So let's get back to this hospital stay and this weekend. I get a text on Friday from my clinic nurse that says "don't panic but they found something on your CT scan too, and I need to call you."  So I panicked. Well, what they found was a mass in my right breast, and it's been there for 17 years, that I know of and hasn't changed and my GYN has never said anything about testing it and my mamogram never said anything about it last year..... so they scheduled an ultrasound to figure out what this mass is. All I could see was a big black dot on the screen and she kept measuring it and taking pictures and I have not seen the report on that one yet. So I'm not sure if they will do further testing but it's all going to be moot b/c if I had breast cancer it would have killed me by now.

Back to this morning, The nurse started my antibiotics this morning and a half hour later she comes back in to say that she has to stop them immediately. I ask her why, and she said my doctor has been on the phone with Stanford and they want me off the antibiotics because they are transferring me to Stanford. Now I have speculated with some other doctors that have meandered into my room this morning as to why they want me off the antibiotics and they think maybe it's because they want to get the heart tests done and then put me on the list but not while I'm receiving antibiotics for an exacerbation. To be honest, I feel quite a bit better, but I can't say my lung function is doing better. I am supposed to get that tested Monday afternoon, but I could be riding to Stanford by then. Who knows!

Another monkey wrench this morning is my hemoglobin. It's low. Really low. 7.7 low. There are two treatment options. One is a blood transfusion. Now with me getting so close to transplant they really do not want me to receive blood products because that can mess up all sorts of antibody types in my blood for good lung matches. There is this other shot called Procrit. It stimulates my own bone marrow to produce more red blood cells and raise my hemoglobin. I guess my iron is low as well. Everything is low b/c they keep drawing blood to find out what is high and what is low! It's  vicious cycle.

Well, I think that about sums up my last five days. I'll update when I know about my transfer to Stanford. I hope they have big rooms. I have a lot of luggage.

The Discharge

I was discharged from the hospital today. My lungs had fallen in December to an all time low of 0.78 Liters, which is approximately 25% lung function. After the first six days in the hospital I had a big increase to 0.89 Liters, which is approximately 29% lung function. However, upon my discharge today, the lung function is back down to 0.80 Liters, which is approximately 26% lung function.

Was this two week admission a failure? No. It's just the way things are. Hopefully Stanford will see this non-recovery of lung function as a possible motivation to get me on the lung transplant list this year. So ho-hum. It's still hard to do things because I can't breathe and I want to push myself to do so much more. I still have a daily fever. But I will survive!

Paul picked me up around 10:30 and after about five minutes of paperwork hoopla, we got released and we were home around 11AM.

And Oh, My, God. Who was excited to see me? Mozzi!!!!!! She went absolutely berserk. She peed all over me and the floor. She started crying as soon as she heard my voice. She whimpered like that for a good 30 minutes every so often and did not want to leave my side. She enjoyed her belly rubs from the mama. I missed her.

After an amazing burrito (everything is amazing after the hospital food) I took a long nap, only to be woken at 2:30 by the twins! They loved on me and gave me kisses and I loved on them back. I swear I closed my eyes for just one minute and it was 3:30 already! I had fallen back asleep.

I got up and tried to get things in order, unpacking from a 2 week trip is never an easy feat! There will be more stuff to do tomorrow and of course Paul is doing the majority of the heavy lifting.

I'm glad to be home.

'Tis the Season to Sleep in Heavenly Peace

This morning I rolled over at 6:01AM. I wasn't expecting to get much more sleep as the kids would be up soon and it's a constant circus outside my door with the puppy in tow before school now.

But I did.

I slept.

I slept a lot.

I woke at 9:56AM. I had to check a second clock just to be sure. How could this happen? I haven't slept a solid 4 hours in years, let alone into the morning like this!  And on Housekeeper day of all days! They were going to show up within the hour and I had not showered, eaten, or done any treatments. Normal treatments alone, take 1 hour.

I walked around the house, looking for the dog, remembering the crate was in the garage today, so the housekeepers can get around it in the kitchen. I thought, "Wow! Mozzi is being so quiet! Maybe she finally fell asleep in her crate." I noticed it was quite wet on our patio so it must have been raining quite hard.  I walked around some more frantically putting things away and assessing what had to absolutely be done in the next 30 minutes. I decided on getting dressed, putting my hair back up, a quick shot of Xopenex nebulizer, and eating, if there is time.

After deciding getting dressed was priority number 1 I listened to the rain fall outside my window. Then it started pouring and hitting the window quite hard. I didn't even know it was supposed to rain today.

I was all dressed and ready to start some Xopenex.

Then I heard Mozzi cry.

I went looking for her cry and it wasn't coming from the garage. It was coming from outdoors. OMG She'd been outdoors for two hours. In a cast. In the rain. Doh!

I pulled the sopping wet mutt into the house. I dried her with two towels because she was soaked from head to toe. The towel was still soaking up water from her cast after about 10 minutes, and she was dry everywhere else so I called the vet. Off to the vet we go again! I had to put her cone of shame in the dryer b/c it was so wet I thought it was going to give her an ear infection if she kept it on. I wrapped her up in a towel and drove to the vet with her on my lap. I carried her inside and she was whisked away immediately. They were waiting for us.

I got a good talking to by the vet technician and the vet himself, as if I didn't know the cast was supposed to remain dry. Apparently her leg showed signs of being rubbed in the knee area and her toes were showing signs they had been wet on multiple occasions, which was news to me. She can get fungus (athletes foot) if her leg is not kept completely dry for the duration of the cast. Good news is the impromptu x-ray showed improvement in her fracture. The way she's been bounding around the house, it's no wonder. Best news is the new cast only cost me 20 bucks.

Now it's the last day of school for the twins and Tom was coming home with a couple extra friends. It was also a half day. The vet appointment took nearly an hour and I was starving. I had to bring Mozzi to the store to get a sandwich. I decided the best place to put her was to strap her into Abby's car seat, the 5 point harness kind. So new cast and all, she was strapped into place, whining all the way. She stopped whining when she realized she could look out the window.

I made a mad dash into Raley's for some grub and headed back out to the car. Moz was still in the car seat and she hadn't eaten her cast or the car seat straps. Success! She hadn't even peed on the seat. Double success.

I rolled into my driveway and the housekeepers car wasn't there. I thought, oh no! Did they forget to come? No, I'd actually been gone for over 90 minutes and they had come and gone! I got home 20 minutes before the kids. Time to spare! Whew!

I watched Mozzi carefully the rest of the day, keeping her away from the busy boys running amuck in the house, so she wouldn't run after them and potentially hurt her leg again. Boy oh boy, it's been a long day.

So why was Mozzi outside in the first place? Because it wasn't raining when Paul left for work at 8:15 and he knows that I usually get up around that same time. It was just some fluke that it deluged on the day we left her outside AND I slept two extra hours, like a teenager on Christmas Break.

Only 1-3 more weeks with this cast thing! Poor Moz.

The Not so Normal Annual Physical

Yesterday was the twins 10 year check up. If Tom thought getting the tetanus shot was going to be the worst part, boy was he wrong.

The doc starts his normal routine and finally gets to looking into the ears. Then he says, "Hmm." Followed by silence.

Doc: "Tom is there any reason you would have something green stuck in your ear."

Me: "He's an avid soccer player and it's quite possible there's grass in there."

Doc:"Mom, this is not grass. Come and take a look."

Me: "Gasp! Nope that's certainly not grass."

So the doc gets some special equipment that looked like a long flexible tube with a bulb on the back of it. He places it deep into Tom's ear and presses on the bulb, thus creating a small bubble behind the blockage and in theory he would drag the object out. Tom was screaming in pain. The doctor said since he does not use q-tips (which are NOT ADVISED) he has a very sensitive ear canal. So we were sent home with a prescription for ear numbing drops and told to have Tom lie on his left side as much as possible, adding ear drops a few times a day and eventually it will fall out. If that doesn't happen in a week we were to go see an ENT doctor.

After coming home, using the drops and irrigating the crap out of his ear with sterile normal saline nothing was coming out. Tom was convinced this was going to ruin his halloween even though it was not painful and he did not feel it in there.

I ended up calling the Sutter Urgent Care and asked if they had the ability to pull things out of ears. There was a young, full of energy doctor, Dr. Lai, who said, "It's my favorite thing to do!"

The check in process was horrible. For some reason I had to fill out paperwork after paperwork as they did not have Tom in the system, though he's been seen by Sutter doctors since he was an infant. Once that hour of paper work was done things happened pretty fast. They called us back and Tom got set up in this large chair with big lights on top. Dr. Lai comes bounding into the room to take a look. Boy was she excited!

She said there was definitely a foreign green object stuck deep in Tom's ear. She found her tools, the alligator forceps and then called for an audience, "Come on boys!" and two more white coat doctors came in to watch the show. They all took a look first and then Dr. Lai got down to business. It took her less than ten seconds to send the alligator forceps in, pinch the green object, and pull it out. Then everyone wanted to look at it! She paraded it around the office and then dumped it into a trash can.

We're still not sure if it was crayon or oil pastels or even play dough! Oddly though, one week ago Tom's class was working with green oil pastels. Tom is either too embarrassed to admit what happened, or he just doesn't remember. When was the last time anyone looked in his ears anyway? Could have been a year ago at his 9 year old check up. So there's no telling how long this object was lodged in his ear canal except that there was no irritation and no infection, leading us to believe it was probably in there for a short period of time.

And that is the story of the green crayon in my 10 year old's ear.

Orion: November 23, 2000 - September 15, 2014

Paul and I took Orion to the vet yesterday morning to have him euthanized. We had been talking about it for a couple of weeks but Tom was so upset and didn't want us to "just take him to the vet and have the vet kill him!"

By Friday last week Tom was ok with spending one last weekend with Orion and then saying goodbye on Monday morning. The kids went off to school and we took Orion to the vet around 9:30AM.

I had never been in the room with a dog was euthanized before. It kind of caught me by surprise. The vet said he would get sleepy with the first half of the syringe and then he would stop breathing with the second half of the syringe (overdose).

We finally got him into a laying down position but since Orion is Orion he was far more interested as to what the vet was doing with that syringe, so his head was up. She was 3/4 of the way through the syringe and he was still bright eyed and sniffing her hand. I joked that he must have my tolerance to sedatives. We should have used a horse tranquilizer!

Anyway, it was completely sudden and unexpected he didn't get sleepy he just dropped dead and his head fell from an up position and flopped backward onto the floor kind of hard, but he was gone by the time his head hit the ground. I just kept staring into his eyes. They looked different. I closed his eyes before we left the room, we just left him lying there by himself.  I hope the vet came back soon to wrap him up and take him away. I'm not going to lie. It was hard to watch but I'm glad I was there.

Poor Orion had been reduced to hardly eating, lost 30 pounds in the last year, could barely walk, and had now bowel or bladder control. He'd often just pee or poop where he was lying down because it was too much work to get up. Or he'd walk to the back door and then trip and fall into a sitting position before he could get to the grass and he'd just pee on himself because he couldn't get up. This happened more and more in the last month. I hadn't seen him truly wag his tail in happiness in several months and he certainly didn't care if I pet him or not. He used to nudge me if I stopped petting him, but he just didn't care anymore.

The way Abby reacted was so different from Tom. I asked Abby if she noticed who was missing after school and she said, "Well, I noticed Orion was missing when I sat down to do homework. Now after the housekeepers come and vacuum up his hair we are going to have the cleanest house for a long time!"  Orion's hair would get everywhere. She helped me clean up some food and water bowls so we can freecycle them later this week.

Tom on the other hand, ran to his room but tried not to let me see he was crying. I gave him the picture that was on our bookcase, it's a small frame in the shape of a dog and it has a small photo of Tom around 3 years old leaning onto Orion's back. He took that frame to his room. Then he came into my room long after bed time and asked what did I do with Orion's dog collar. I guess he was upset I had already thrown away one of the dog beds. I told him it was on top of the fridge and if he wanted it he could have it, it still smells like Orion's shampoo.

RIP Orion You certainly gave us a run for our money these last 14 years.

Low Card the Band

Last night was "Off the chain!!!!" as Mel B. would say. (Anyone AGT fan?)

I went to go see Paul's band play their first real gig at The Boardwalk in Orangevale. There were seven bands playing and Paul's band was sixth to go on. The significance of this is that:

1. I was out of the house
2. On a Thursday night
3. On purpose
4. Past 6pm.

The name of Paul's band is Low Card. And they rocked the house! I didn't get home until midnight but it was so worth it, once in a lifetime to see this band's first real gig.

Here are some pics I took at the bar.

 

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.

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!