Tuesday, November 03, 2015

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.




Thursday, October 01, 2015

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!





Monday, September 28, 2015

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

Monday, August 10, 2015

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.)


Saturday, July 11, 2015

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

Thursday, March 19, 2015

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




Wednesday, March 04, 2015

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

Tuesday, March 03, 2015

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

Thursday, February 26, 2015

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!

Thursday, February 05, 2015

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.

Sunday, February 01, 2015

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.

Thursday, January 08, 2015

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.