Things I did/had done today:
took out the blown iv in my right fore arm, replaced it with one in my left arm
adjusted my epidural so that my pain was under better control
got my Foley catheter out
pooped (they wouldn't let me eat until I did that, so I really didn't have a choice) in front of a male nurse on a portable commode no less... overcame a lot of fears right there with one act!
went for a walk
ate my first two post transplant meals
got a fruit bouquet, chocolates, balloons and a teddy bear to cuddle
incentive spirometer
acapella
peed a lot (lasiks helped out there b/c i was holding onto so much fluid after being on the bypass machine and prednisone)
goals for tomorrow:
get out of icu
one whole lap around the floor
one more chest tube out
break 1000mL on IS
Wednesday, November 3, 2010
Saturday, October 30, 2010
some more waiting? don't mind if i do!
down in pre op. waiting for the visual go ahead on the other end. when we get that call they'll take me back. until then, we wait. maybe an hour.
Ate my first immunosuppresive drugs
SoluMedrol 1000mg IV - steroid
Prograf 3mg
Cellcept 1000mg
Pills down the gullet at 3:18 and IV started. My nurse said the plan is for them to come get me at 5am to take me down to preop to get me prepared.
Waiting to sign some release forms now . And owie, my arm... solumedrol in a dinky peripheral iv kind of stings.
Prograf 3mg
Cellcept 1000mg
Pills down the gullet at 3:18 and IV started. My nurse said the plan is for them to come get me at 5am to take me down to preop to get me prepared.
Waiting to sign some release forms now . And owie, my arm... solumedrol in a dinky peripheral iv kind of stings.
Today I got THE CALL
I mentioned to several people that because I was going to spend so much time and money on my Halloween costume this year, I would probably end up not getting to wear it because I got a call for lungs.
It was 2:30 this afternoon, I was at the salon, my dear friend Jackie was helping me with my Gaga wig for tonight. Chris' family had a Halloween party and it was going to be my big costume night for the holiday. She was teasing the yucky synthetic hair and Kayla brought me my phone. It was ringing and the caller ID said "Fairview"... I stopped and said, "Oh my god.... Hello?" It was my coordinator, she asked how I was doing and I asked the same, she then said, "How do some new lungs sound?" I think I replied with 8 or 9 "okays" before she could tell me to calm down (I think at this point Jackie asked me "Is this the call for lungs?" and I was nodding my head) - and then we got disconnected.... so I waited a second for her to call me back, meanwhile, dialing my dad on the salon phone. I got the info from my coordinator, hugged everyone goodbye and drove (sped) home while calling mom, dad, aunts, boyfriend and other important people. I think I made 6 phone calls on the short drive home. I ran inside, grabbed the things I knew I would want (in addition to the bag I already had packed in my car) and went back outside to meet Chris, who had dropped by my house to kiss me goodbye. We pulled out of the neighborhood just as my mom was pulling in, so she met us at the hangar to say goodbye. The plane left about 4:15 to minneapolis and we arrived in my room at the hospital at 7 after an ambulance ride from the airport.
When I got here I immediately showered with the special (code for nasty) soap. They drew lots and lots of blood, did a chest xray, started me on iv antibiotics and ALMOST gave me my first dose of prograf and cellcept BUT the coordinator called just as i was lifting the cup to my mouth and said hold off on taking them, because the people on the other end were still trying to find homes for the other organs. All I know is that the lungs were holding up fine the last I talked to anyone which was a couple hours ago. At this point we don't know if it will be minutes or hours before we hear anything more. Anesthesia has been in to talk to me and they told me to get some rest - yeah right!
I will try to text an update when I hear something, but if I don't get the chance, my mom should be updating my caring bridge site:
http://www.caringbridge.org/visit/newlungsforjustine
As Rocco says in the Boondock Saints "I'll catch you on the flip side!"
It was 2:30 this afternoon, I was at the salon, my dear friend Jackie was helping me with my Gaga wig for tonight. Chris' family had a Halloween party and it was going to be my big costume night for the holiday. She was teasing the yucky synthetic hair and Kayla brought me my phone. It was ringing and the caller ID said "Fairview"... I stopped and said, "Oh my god.... Hello?" It was my coordinator, she asked how I was doing and I asked the same, she then said, "How do some new lungs sound?" I think I replied with 8 or 9 "okays" before she could tell me to calm down (I think at this point Jackie asked me "Is this the call for lungs?" and I was nodding my head) - and then we got disconnected.... so I waited a second for her to call me back, meanwhile, dialing my dad on the salon phone. I got the info from my coordinator, hugged everyone goodbye and drove (sped) home while calling mom, dad, aunts, boyfriend and other important people. I think I made 6 phone calls on the short drive home. I ran inside, grabbed the things I knew I would want (in addition to the bag I already had packed in my car) and went back outside to meet Chris, who had dropped by my house to kiss me goodbye. We pulled out of the neighborhood just as my mom was pulling in, so she met us at the hangar to say goodbye. The plane left about 4:15 to minneapolis and we arrived in my room at the hospital at 7 after an ambulance ride from the airport.
When I got here I immediately showered with the special (code for nasty) soap. They drew lots and lots of blood, did a chest xray, started me on iv antibiotics and ALMOST gave me my first dose of prograf and cellcept BUT the coordinator called just as i was lifting the cup to my mouth and said hold off on taking them, because the people on the other end were still trying to find homes for the other organs. All I know is that the lungs were holding up fine the last I talked to anyone which was a couple hours ago. At this point we don't know if it will be minutes or hours before we hear anything more. Anesthesia has been in to talk to me and they told me to get some rest - yeah right!
I will try to text an update when I hear something, but if I don't get the chance, my mom should be updating my caring bridge site:
http://www.caringbridge.org/visit/newlungsforjustine
As Rocco says in the Boondock Saints "I'll catch you on the flip side!"
Friday, October 29, 2010
What's next?
Tuesday morning did not go as planned. My doctor decided she did want to do conscious sedation during the procedure, so I had to get an IV placed. The nurse blew the first vein but got it in the other arm.
I've never had to take out my contacts for conscious sedation before, so I was unprepared to do so, leaving me nearly blind the rest of the time I was at the hospital. They wheeled me back and the last thing I remember was looking at the lights on the ceiling thinking "I wonder if they've already given me something" and just then the anesthesiologist says "you're going to feel some medicine"..... An hour later I am back in my bed, first thing I do when I open my eyes is say "Did it work?" and my doctor just shook her head. Cue groan, roll onto side, pull covers over head.
What I found out later was that my doctor tried unsuccessfully to locate my fallopian tubes for 30 minutes. This whole procedure from start to finish should take only 5 minutes. Because it's the wrong time in my cycle (thanks to insurance and administrative errors delaying us), my uterine lining was too thick to have good access to my tubes. Usually a patient is prepped for this procedure with 30 days of hormone treatment to thin the endometrium, but because of my previous history with blood clots, I wasn't able to do this and we tried to time it with my cycle. Now my options were to try again in 3 weeks and hope it goes better or to have a Lupron Depot injection and try again in 3 weeks. The injection suppresses estrogen production and prevents endometrial tissue growth. Thus for the month that the injection is active I will experience menopause symptoms: hot flashes, emotional lability, night sweats, headache etc... I opted to go with the injection because I would rather only do this once more than possibly twice more.
After a shot in the booty, I was on my way. My doctor gave me a hug yesterday and told me "You might hate me, but it will be worth it"... I hope she's right... about the being worth it part. I hope this works! So far I'm not a raging bitch, my right cheek is just a little tender. I'll give it a few days before I decide whether or not I'm willing to do time for homicide.
I've never had to take out my contacts for conscious sedation before, so I was unprepared to do so, leaving me nearly blind the rest of the time I was at the hospital. They wheeled me back and the last thing I remember was looking at the lights on the ceiling thinking "I wonder if they've already given me something" and just then the anesthesiologist says "you're going to feel some medicine"..... An hour later I am back in my bed, first thing I do when I open my eyes is say "Did it work?" and my doctor just shook her head. Cue groan, roll onto side, pull covers over head.
What I found out later was that my doctor tried unsuccessfully to locate my fallopian tubes for 30 minutes. This whole procedure from start to finish should take only 5 minutes. Because it's the wrong time in my cycle (thanks to insurance and administrative errors delaying us), my uterine lining was too thick to have good access to my tubes. Usually a patient is prepped for this procedure with 30 days of hormone treatment to thin the endometrium, but because of my previous history with blood clots, I wasn't able to do this and we tried to time it with my cycle. Now my options were to try again in 3 weeks and hope it goes better or to have a Lupron Depot injection and try again in 3 weeks. The injection suppresses estrogen production and prevents endometrial tissue growth. Thus for the month that the injection is active I will experience menopause symptoms: hot flashes, emotional lability, night sweats, headache etc... I opted to go with the injection because I would rather only do this once more than possibly twice more.
After a shot in the booty, I was on my way. My doctor gave me a hug yesterday and told me "You might hate me, but it will be worth it"... I hope she's right... about the being worth it part. I hope this works! So far I'm not a raging bitch, my right cheek is just a little tender. I'll give it a few days before I decide whether or not I'm willing to do time for homicide.
Friday, October 22, 2010
Loaded Update
The past three weeks have been extremely busy and I will do my best to cover it all!
The Big Decision
I've always been uneasy with the idea of having children, knowing that as someone with CF, I would be passing on a copy of one of my defective CFTR genes. After several years of thought, I've come to the decision that I don't want to have children of my own. I don't need to elaborate on all of the reasons here, but this is what I've decided. My doctor and I have decided that I will undergo an Adiana procedure, which will block my tubes off (similar to tubal ligation, without any incisions) and prevent pregnancy. I'm actually very excited about it. It's something I've wanted to cross off my list of things to worry about and now I finally get the chance to do it! I wonder if this will earn me a Darwin Award?
Drugs
When I was admitted several weeks back, I had made a decision to stop taking Ambien. I have been taking it for over three years and do not want to be on it anymore. I had my last half of a pill the first night I was in the hospital. Going off sleeping pills in the hospital turned out to be a great plan because they were getting me up at 5:30 in the morning for my first CPT, and I didn't have time to take naps during the day. I was ready for sleep at night and slept well, despite the fact that people were in and out of my room through the night.
A little over two weeks ago I also began tapering off one of my two antidepressants (Remeron). know it will take several weeks for my body to adjust, and when I go back for another check-up, we'll discuss going off the other one. I feel like right now is the best time for me to be ridding my pill box of unnecessary pills and my relieving my liver and kidneys of extra work. Post-transplant immunosuppressive drugs are very taxing on these organs, and the fewer medications I have to take, the better. I feel like I was put on antidepressants prematurely, at a time when I was just learning that I would need a lung transplant, at the age of 21. I don't know whether it was time or the drugs that eventually had me less terrified of the prospect, but I feel like now I've developed sufficient coping skills and healthier outlets for the many emotions that accompany chronic illness. It's time to see if I can fly solo!
Exercise
Right before I left the hospital, I began using the pedal machine to get my legs ready to hit the ground running (or walking). I joined the dailymile (friend me on there to follow my workouts!) and got three in before I was discharged on the 29th. I expected to have extreme exhaustion and muscle fatigue accompanied by lots of low blood sugars after I got back to my normal routine at home, but experienced none of those things at all. I'm not complaining!
Lungs
I went home on 1 week of IV vancomycin, which was manageable. I do feel TONS better than I did when I went into the hospital. I'm still having occasional pains in my lungs, but not constant or consistent. Ibuprofen seems to take care of it. They are staying clear and for the most part I feel well!
Halloween
For Halloween this year, I decided to go big - Lady Gaga. I'm making my costume for the first time ever. I don't know how to sew but I do have a vague idea of how I'm going to go about this outfit. The shoes are finished and they took me about 8 hours to do. I will post more pics as it progresses, but here are a few teasers.
The Big Decision
I've always been uneasy with the idea of having children, knowing that as someone with CF, I would be passing on a copy of one of my defective CFTR genes. After several years of thought, I've come to the decision that I don't want to have children of my own. I don't need to elaborate on all of the reasons here, but this is what I've decided. My doctor and I have decided that I will undergo an Adiana procedure, which will block my tubes off (similar to tubal ligation, without any incisions) and prevent pregnancy. I'm actually very excited about it. It's something I've wanted to cross off my list of things to worry about and now I finally get the chance to do it! I wonder if this will earn me a Darwin Award?
Drugs
When I was admitted several weeks back, I had made a decision to stop taking Ambien. I have been taking it for over three years and do not want to be on it anymore. I had my last half of a pill the first night I was in the hospital. Going off sleeping pills in the hospital turned out to be a great plan because they were getting me up at 5:30 in the morning for my first CPT, and I didn't have time to take naps during the day. I was ready for sleep at night and slept well, despite the fact that people were in and out of my room through the night.
A little over two weeks ago I also began tapering off one of my two antidepressants (Remeron). know it will take several weeks for my body to adjust, and when I go back for another check-up, we'll discuss going off the other one. I feel like right now is the best time for me to be ridding my pill box of unnecessary pills and my relieving my liver and kidneys of extra work. Post-transplant immunosuppressive drugs are very taxing on these organs, and the fewer medications I have to take, the better. I feel like I was put on antidepressants prematurely, at a time when I was just learning that I would need a lung transplant, at the age of 21. I don't know whether it was time or the drugs that eventually had me less terrified of the prospect, but I feel like now I've developed sufficient coping skills and healthier outlets for the many emotions that accompany chronic illness. It's time to see if I can fly solo!
Exercise
Right before I left the hospital, I began using the pedal machine to get my legs ready to hit the ground running (or walking). I joined the dailymile (friend me on there to follow my workouts!) and got three in before I was discharged on the 29th. I expected to have extreme exhaustion and muscle fatigue accompanied by lots of low blood sugars after I got back to my normal routine at home, but experienced none of those things at all. I'm not complaining!
Lungs
I went home on 1 week of IV vancomycin, which was manageable. I do feel TONS better than I did when I went into the hospital. I'm still having occasional pains in my lungs, but not constant or consistent. Ibuprofen seems to take care of it. They are staying clear and for the most part I feel well!
Halloween
For Halloween this year, I decided to go big - Lady Gaga. I'm making my costume for the first time ever. I don't know how to sew but I do have a vague idea of how I'm going to go about this outfit. The shoes are finished and they took me about 8 hours to do. I will post more pics as it progresses, but here are a few teasers.
Friday, September 24, 2010
Flash Me Friday!
Wednesday, September 15, 2010
Monday, September 6, 2010
The past two weeks
I've been working harder to control my blood sugars the past two weeks, and it seems to be making a difference. My trend line has been lowered by about 50 mg/dl, which puts me in the 150-225 average range, instead of the 210-250 range.
Progress, not perfection!
A couple weeks ago I was beginning to feel pretty punk, and went to the doctor. My PFTs were only down a little, which shocked me. I was expecting to have to be admitted or do home IVs at the very least. We opted for a couple oral antibiotics instead, and I finished them last week. I have to admit, they really did help. But now I'm not sure if I'm going downhill again. My left lung (just to the left of my sternum) has been hurting pretty badly at times and has been getting worse, not better, as time passes. It's not to the point where I need to see anyone about it. Even in the past, when it's been nearly unbearable, they really can't do a whole lot for me. Maybe I will just get some new lungs soon?
I exchanged emails with my transplant coordinator last week and what I was told was:
- they have done 16 transplants this year
- they have been quiet the past few weeks (no transplants)
- I am essentially at the top of my blood type list because the other people who are my same size, with higher lung allocation scores, have other factors which make them more difficult to match - therefore, they expect that I should be next
This news has stuck in the forefront of my mind. I know that the holiday weekends are typically high organ offer times. With every place I go, every thing I do, every thing I plan, I keep in mind that I need to be able to get my ass to the airport stat if I get THE CALL. So no riding in other peoples' cars, the cell phone is always visible, and my bag is (still) packed in my car, ready to go. I even have my digital camera with me (battery fully charged) so I can get lots of pictures to document my journey, because I may or may not be too excited to remember details.
I continue to pray for my donor and my donor's family, because they will be experiencing a great loss just as I am getting the opportunity for renewed life.
Tuesday, August 24, 2010
Day 2: If you are what you eat, then I'm a CARBOHYDRATE covered in CHEESE
Some things I ate today:
An entire box of Spirals Mac & Cheese (extra butter, half and half)
an 8 ounce block of cheese
more cotton candy
Blood sugars: 119 (fasting), 177, 208, 140
It just dawned on me why my tummy might be a little nauseated. Maybe I will try to mix better things inside it tomorrow. Right now, it's tums and a banana for a little bedtime snack.
An entire box of Spirals Mac & Cheese (extra butter, half and half)
an 8 ounce block of cheese
more cotton candy
Blood sugars: 119 (fasting), 177, 208, 140
It just dawned on me why my tummy might be a little nauseated. Maybe I will try to mix better things inside it tomorrow. Right now, it's tums and a banana for a little bedtime snack.
Monday, August 23, 2010
Day 1: OPERATION NORMALIZE GLUCOSE LEVELS
Since I was diagnosed with Cystic Fibrosis Related Diabetes (CFRD) when I was 12, I’ve never been consistent with checking by blood sugars nor with doing enough insulin. This is a graph of my levels since May 27, the day I got out of the hospital.
My doctors want my blood sugar between 70 and 150 – at all times. As you can see, it’s rarely below 200, often spiking dangerously high and bottoming out scarily low. Terrible control. And as you can see from the orange line, it’s been trending steadily upward all summer. I’ve been lazy and complacent, and because I haven’t experienced any obvious ill effects, it’s easy to stay that way. But the minute my kidneys fail I know I’ll be backpedaling faster and harder than I ever thought possible. I know post-transplant I will need every bit of kidney function those little suckers can muster. So today starts Operation Normalize Glucose Levels! My mission is to test my glucose BEFORE every meal and to accurately count and portion carbohydrates so that I know exactly how much insulin I should be doing.
My fast-acting insulin guidelines:
1 unit per 15 grams of carbohydrate
Sliding scale:
1 unit for every 50 mg/dl above a glucose level of 150 mg/dl
DAY 1: Woke up this morning (barely, it was 11:30) and my blood sugar was 111. Awesome start. Rest of day levels: 134, 111(agian!), 100. Success.
Some things I enjoyed today spike-free, because I counted carbs (accurately) and actually did the insulin:
Cotton candy
Gummy bears
A twinkie
Things I avoid, regardless of how much insulin it would take:
Regular soda (diet when I’m craving the bubbles, or just water – there’s a novel concept!)
Juice (though I do have a smoothie every once in a while)
The next challenge will be bringing my glucose monitor with me out into the world, and making sure I test before I eat. Also, portion and carbohydrate estimation is another downfall of mine. I been told, I’ve read the literature, but I still have no concept of how much is a cup of rice or how much is a tablespoon of honey, especially when I’m drizzling it into a cup of tea.
Sunday, August 15, 2010
In light of the fact that so many people are finding out about the Double Rainbow video, here are some pop references to the viral video
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Today's Foxtrot in the Funnies |
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| Not Perfect, but delicious. So intense! |
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| Even THE NPH is into double rainbows. Can he tell us? What does it meeeeean? and for those of you who haven't seen it yet, I give you "full-on double rainbow all the way across the sky"guy |
Sunday, August 1, 2010
Time for an update!
I have little to report on the health front. Hot and humid weather causes me significant breathing issues, so I try to stay inside as much as possible. Unfortunately, inside usually means sedentary at the computer for a gross (as in disgusting) amount of hours. I'm in the middle of a reading ebb. Not doing as much as I have been. It's just too stinkin' hot. I've been sitting in my room, enjoying my fan & my Scentsy flameless scented candles and collecting dust. I do have a cat to entertain me, so here's what Zoe's been up to lately.
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| Pog-rich. Yes, pogs ... I can't believe I still had (had, being the key word, as they went directly in the trash following this photo) these tucked away somewhere. This photo taken in the style of Stuff On My Cat. |
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| Chasing her tail in a her new bukkit. |
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| Harassing Skitter. |
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| Annoyed that her scratching post has become my Helios resting station. |
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| Found a bubble wrap bed. |
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| Actually it looks more like a coffin. |
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| Tuckered out. Getting into so many things is exhausting when you're little. |
Hopefully this week will bring a call. I'm very, very ready to get some new hardware installed. My good friend, Cystic Gal got her lungs on Tuesday!!! I got a text from her yesterday and SHE CAN BREATHE! I'm so happy for her! I'll leave you with one last photo of me, sporting my Cystic Gal t-shirt!
Tuesday, July 20, 2010
Morbidly Pleasant
I'm sitting in my room, facing my computer.
To my right is a window.
I open it and let in all the southern light that I can.
Zoe seems to find joy in early morning sunlight, and I do, too.
It's a recent discovery for me - before I wanted the shades drawn, isolating myself inside my man-made cocoon of artificial lighting, creating my own solstices, deciding when daylight ends or begins.
All the rest of my life is based on artificial supplements: my oxygen, my digestive enzymes, my bacteria fighting abilities, even the ability to effectively cough has been assigned to a machine. Why not shut out the sun? It will probably give me skin cancer one day anyway. But why, then, does it make me so happy? When the day is new and I'm resting in between the cool sheets, my body still hot from sleep, I feel energized, motivated; I feel "normal". And then I roll over, that familiar urge to cough strikes without warning and I shoot up into "cougher stance". I reach for the kleenex to spit and drop it into my bedside trash can. I have everything I need within reach. I hate that my life has come to this point, being so medically handicapped, that I have to alter my living environment to accommodate the necessities. The nice thing is, once I'm thoroughly exhausted after doing my morning treatments, I can sometimes crawl back into bed and pick up where I left off sleeping or reading, with a napping buddy at my hip.
It's just morbidly pleasant.
Saturday, July 17, 2010
This is MY History
What you see below is a plot of my actual pulmonary function results over a span of 11 years. This is a graphic representation of the decline pattern of my unique case of Cystic Fibrosis. On the graph there are two lines. The blue line shows the Forced Vital Capacity (FVC) and is measured in liters. It shows how much air I can exhale out of my lungs to indicate how much capacity I have. The red line shows the Forced Expiratory Volume in the first second (FEV1) and is also measured in liters. People with healthy lungs should be able to exhale about 85% of their entire capacity in the first second of forced exhaling. Simply put, the FEV1 is the most widely accepted indicator of the lung function in a patient with Cystic Fibrosis, where as, the ratio between the two numbers tells how elastic (or scarred/inelastic) the lungs are, which is also important.
Some Things to Consider When Reading the Above Graph:
The pink line indicates the period of time when I was still riding horses and playing tennis regularly. As time moves forward, I played tennis less but increased my riding. In the end of my riding and showing career, I was on at least one horse 6 days a week.
Between the orange hash marks, I was attending college.
The yellow dots represent the day I quit drinking alcohol.
The green circles represent the day I had my gall bladder removed.
FVC All-Time
High 3.44L 3/02/02
Low 1.22L 3/16/09
FEV1 All-Time
High 2.49L 12/23/03
Low .62L 7/11/06
I was evaluated for transplant in May 2008 and was listed June 11, 2008.
One interesting fact is that I had completely quit doing airway clearance therapy or chest physical therapy just before this graph begins. I didn't even own a vest until September 2005.
I know that the combination of the end of my riding career (the end of exercising) and being away at college (slacking on treatments, drinking, staying up late etc.) had a huge effect on the ability of my lungs to maintain function. Had I known that any of these things would have such a consequence on my health, I would have done it all differently - but what's done is done. The only thing I can do now is share my story so that others don't make the same mistakes!
Lessons I Learned (and I hope you will, too!)
1. Do your CPT, airway clearance, acapella, flutter, vest, whatever you do - just DO it! I spent more time coughing during the day when I wasn't doing these things than I would have if I'd just taken a half hour a couple times a day to sit down and make an effort with whatever method I chose.
2. Get out of breath. Whatever activity that gets you up and moving, something you like, keep doing it. It's much harder to get back strength and function after a period of absence than it is to continue maintaining. If you have to wear oxygen, make it happen.
3. Alcohol in excess is an enemy. It's a Central Nervous System Depressant, meaning it affects your breathing (decreasing the depth and frequency). It may feel nice not to have the urge to cough while you're drinking - I felt normal, like I didn't have CF when I was drinking - but just as with other muscles we don't exercise, our diaphragms lose strength, strength that we need to cough and breathe deeply.
4. Acid reflux in Cystic Fibrosis is common. I never knew my gall bladder could be to blame for some of the symptoms I was having, excessive bloating and shortness of breath (especially after eating). After I had my gall bladder removed, I felt instant relief (once the pain subsided!). I wasn't constantly popping Tums despite taking 20mg of omeprazole twice a day. And I even gained weight, because I wasn't getting sick after eating or avoiding eating a lot because of the bloating. If you're having issues with GERD, ask your doctor about getting some liver blood tests done. If they show abnormal numbers, it might be wise to get your gall bladder an ultrasound.
5. When the doctor says it's time for IV antibiotics and a couple weeks in the hospital - DO it! You don't get 4 airway clearance, all your IVs AND have time to live/work/cook/eat/clean/be a person at home. Don't bother, it's more work than can possibly be done and you're supposed to be getting well! So many times I opted to do home IVs and ended up more run down and tired than I would have been if I'd just gotten admitted. I know it may be difficult to schedule someone to take care of the kids and the house or to miss work/school, but really, everyone wants you around for a long, long time, and if you're not doing all you can to make sure that happens, then you're not only doing yourself a disservice, but you're also hurting the ones you care about most. It sucks giving up the control of your meds and time, to be woken up at all hours, to have a constant stream of people asking you the same questions over and over, to have really really bad food - but trust me when I say that I truly believe it is for the better. The hospital doesn't JUST want your money this time.
6. If the doctor says you need to wear oxygen, DO it! (I think that's my new motto - Nike's not going to sue me are they?) So many times I've been too embarrassed to wear my oxygen in public. I still struggle with it at times or certain places. But, ultimately, it's just going to wear me down and do damage to my heart - the last thing I need is a lung AND heart transplant.
And here, despite everything, I feel absolutely wonderful. I've made peace with the way things are, I don't regret the past, nor do I wish to shut the door on it. I love my family, I have amazing friends and am connecting with so many awesome people in the CF community. If you have a blog - I want to read it! I want to know your stories, share in your problems and work together to find solutions.
I'll leave you with two pictures of me in my prime, doing what I love most in life. One day, after transplant, I hope to be able to return to the show ring.
Right: Columbia, Missouri 2003
Friday, July 16, 2010
OMLG Twinkies!!!!
The last time I was in the joint (for those of you who don't follow, I mean the hospital) a friend and her daughter were coming up to visit me. She called while she was at the convenience store to see if I wanted any junk food - um, YES!
Side note: When I have been in the hospital in Nebraska, they have a convenience store in the hospital, so it's an elevator ride away to my heart's content, provided I don't mind lugging an iv pole and oxygen tank with me.
She was naming off items in front of her and I stopped her, "Do they have Twinkies? I haven't had a Twinkie in years!" I was in luck, she brought me 2 2-Packs and right before bed I thought I'd have one... Just kidding, I ate all 4 of them. A I was sitting among sticky plastic and cardboard wrappers I knew that I would have to get more Twinkies, STAT. My Twinkie addiction was off and running!
Luckily I was in the hospital in my hometown and Daddy, my dealer/enabler, is just a phone call away. The next day he brought me a box of 10 of them, but warned me they might not be very good because the filling was green. I opened the bag and saw what he meant - Shrek Twinkies! I think they were even more delicious than regular Twinkies.
Boxes and boxes of Twinkies later, and several pounds gained, I have decided to make a diary of my Twinkie consumption on Twitter.
Follow me HERE!
Let's just see how many Twinkies I eat. I will not be altering my pattern of Twinkie-eating in any way, so what you're reading will be actual, real-time Twinkie ingestion.
Bon AppeTwinkie!
Thursday, July 15, 2010
A Poem
It is life, and it is misery.
Oh, thieving and sustaining demon,
you will one day be dead to me,
but for now, "ON"... I'll soon be breathin',
free of your time and space consumption.
Can you guess to whom or what the speaker is writing?
Monday, July 5, 2010
Long Update!
I've been meaning to update this for a while now. So let me back track:
June 2nd I went back to the CF doctor here in Wichita for a 1 week post hospital stay visit. My lung function was holding steady (31%, 50%) I felt great.
The following Tuesday, the 8th my dad and I loaded up the car and made our way to Omaha. I watched the sun set over Lake Manawa, sitting at the end of the dock... a beautiful place to sit quietly and meditate, or just listen, not think. It was a very welcomed moment in what I knew to be a busy next few days.
Wednesday, the 9th I saw my ENT (ear, nose & throat) doctor, who did my last sinus procedure the summer of '09. My sinuses look about like you would expect a CF patient's sinuses to look - inflamed and butchered. I was glad to hear that they looked "normal" because my primary care doctor in Wichita was somewhat alarmed at my sinus CT scan - CFers know what I mean. After that appointment I saw the endocrine and CF teams at the hospital all the way across town. The visit was less of a check-up and more of an exit-appointment (although my PFTs were the higest they’ve been in over two years, FEV1 was 35% and FVC was 57%. I've decided that I'm going to transfer my CF and CFRD (CF related diabetes) care to Wichita, following solely with the center here, instead of both Wichita and Omaha. I'm torn about this decision for a couple reasons:
Firstly, it's no secret, but Omaha sees more individual patients than Wichita (larger population in the vicinity) - thus giving them an overall greater experience in dealing with a variety of cases and issues. It's always comforting to know that when you go to your doctor for a problem, he's seen it a million times and knows exactly what to do.
Secondly, I "grew up" under the care of the Omaha CF team. I began to get involved with my own care when I went away to college, I transitioned to the adult clinic about the same time, so I was really learning about CF in a new way, as an understanding and autonomous adult. When I go to the doctor alone, without a parent, they have to talk to me. I get all of their attention, focus, eye contact. I'm free to ask questions, joke, and bulid raport as the patient. When a parent enters the room, even if you can manage the dauntiung task of getting them to remain quiet, they automatically fall into the parent role, regardless of how old or competent the patient may be. They get half the eye contact, they get to ask questions, make comments, go off on tangents or tell semi-related anectdotal stories… ad nauseum. And the doctor humors them. What’s really happening is the parent is trying to gain back the control over their child’s disease and care. While I want to keep Mom and Dad in the loop, it’s important for me to maintain my independence in this area, even though I’m unable to be independent in other areas.
Those things aside, I know that splitting care between two centers is not as beneficial as it seems it should be. At first I thought that I might be getting the best of both worlds – but really, it was the opposite. The new center didn’t feel like they had the authority to act immediately, rather waiting for consult from the old center before prescribing anything, meanwhile I’m waiting to get IV antibiotics or a PICC line, getting frustrated myself, wondering what the hell is going on that all of this can’t be done sooner. Everyone ends up frustrated and touchy and the patient (ME!) suffers. I feel like now that this is settled, I really will be getting the best of both facilities, because Wichita is now the sole caregiver and we (as a team) are able to consult Omaha when there is a question regarding my history or anything else, without feeling like we’ve burned any bridges.
The 10th saw Dad and I on the road again, headed to Minneapolis. Early on the 11th I had appointments at the U of Minnesota. My PFTs were still the highest Minnesota has seen at 31% and 43% but down a little from two days before – goes to show how humidity, barometric pressure, air quality (car air) and allergies can affect pulmonary function from day to day, or even hour to hour. I wasn’t too disappointed in the dip.
On the 12th we headed back to Omaha and then Wichita on the 13th.
Later that week I got my Lung Allocation Score from my visit, and it was 34.93 - which I think is lower than it's been in the past. I didn't have a 6 Minute Walk test done while I was there, so I have to get it done here. I think that will help my score out, since I know I require more oxygen than I have previously. When I get that done and sent to Minnesota, they will update my LAS.
[Side Note: A 6 Minute Walk test is where you wear a pulse-oximeter which reads your pulse and the % oxygen saturation in your blood while you walk for six minutes. A respiratory therapist records your pulse, oxygen saturation, oxygen usage and distance every 30 seconds for the whole six minutes. This gives them an idea of how "disabled" you are. I think they should add a video element to the LAS. To see me cough gives a very clear picture of my dis-ease.]
Ideally, I would get called NOW and wouldn't have to do it! :) I was hoping that the holiday weekend might offer at least a call to me or my friend CysticGal - but no luck as of yet. She has had two dry runs so far. I feel like it's her turn. Or mine. I have been waiting for over two years. I told CysticGal that I feel like we are the last two to get picked for kickball. In all reality, that probably would be the case, since neither one of us would really have a lot to offer an athletic team. But that won't always be the case.
At the end of June, the CF community, nay, the world, lost a dear boy named Conner Reed Jones to CF. His mother shared via her blog, his passing, with amazing clarity and beauty. The world celebrated his life last Wednesday - all over people released red balloons for Conner. Red was his favorite color. His funeral service was even shared with the internet community. In it, his mother wrote the most beautiful and touching eulogy. Anyone who read or watched her family's journey would be touched. It's always sad to lose someone we love so much, especially a child, but her strength is a wonderful testament to her faith in God and in love - concepts which Conner knew well, despite his young age of seven. Which is why I released seven red balloons into the sky on Wednesday. Attached was a card, on which I wrote, so that whomever finds the balloons will know who Conner is and why he was so special. Watching the balloons float upward, I had to shed a tear or two - it was just that powerful.
That's about all for now! I need to do better at updating this - it worries people when CFers disappear for any significant length of time. I know I worry when I don't hear from my CF friends!
June 2nd I went back to the CF doctor here in Wichita for a 1 week post hospital stay visit. My lung function was holding steady (31%, 50%) I felt great.
The following Tuesday, the 8th my dad and I loaded up the car and made our way to Omaha. I watched the sun set over Lake Manawa, sitting at the end of the dock... a beautiful place to sit quietly and meditate, or just listen, not think. It was a very welcomed moment in what I knew to be a busy next few days.
Firstly, it's no secret, but Omaha sees more individual patients than Wichita (larger population in the vicinity) - thus giving them an overall greater experience in dealing with a variety of cases and issues. It's always comforting to know that when you go to your doctor for a problem, he's seen it a million times and knows exactly what to do.
Secondly, I "grew up" under the care of the Omaha CF team. I began to get involved with my own care when I went away to college, I transitioned to the adult clinic about the same time, so I was really learning about CF in a new way, as an understanding and autonomous adult. When I go to the doctor alone, without a parent, they have to talk to me. I get all of their attention, focus, eye contact. I'm free to ask questions, joke, and bulid raport as the patient. When a parent enters the room, even if you can manage the dauntiung task of getting them to remain quiet, they automatically fall into the parent role, regardless of how old or competent the patient may be. They get half the eye contact, they get to ask questions, make comments, go off on tangents or tell semi-related anectdotal stories… ad nauseum. And the doctor humors them. What’s really happening is the parent is trying to gain back the control over their child’s disease and care. While I want to keep Mom and Dad in the loop, it’s important for me to maintain my independence in this area, even though I’m unable to be independent in other areas.
Those things aside, I know that splitting care between two centers is not as beneficial as it seems it should be. At first I thought that I might be getting the best of both worlds – but really, it was the opposite. The new center didn’t feel like they had the authority to act immediately, rather waiting for consult from the old center before prescribing anything, meanwhile I’m waiting to get IV antibiotics or a PICC line, getting frustrated myself, wondering what the hell is going on that all of this can’t be done sooner. Everyone ends up frustrated and touchy and the patient (ME!) suffers. I feel like now that this is settled, I really will be getting the best of both facilities, because Wichita is now the sole caregiver and we (as a team) are able to consult Omaha when there is a question regarding my history or anything else, without feeling like we’ve burned any bridges.
The 10th saw Dad and I on the road again, headed to Minneapolis. Early on the 11th I had appointments at the U of Minnesota. My PFTs were still the highest Minnesota has seen at 31% and 43% but down a little from two days before – goes to show how humidity, barometric pressure, air quality (car air) and allergies can affect pulmonary function from day to day, or even hour to hour. I wasn’t too disappointed in the dip.
On the 12th we headed back to Omaha and then Wichita on the 13th.
Later that week I got my Lung Allocation Score from my visit, and it was 34.93 - which I think is lower than it's been in the past. I didn't have a 6 Minute Walk test done while I was there, so I have to get it done here. I think that will help my score out, since I know I require more oxygen than I have previously. When I get that done and sent to Minnesota, they will update my LAS.
[Side Note: A 6 Minute Walk test is where you wear a pulse-oximeter which reads your pulse and the % oxygen saturation in your blood while you walk for six minutes. A respiratory therapist records your pulse, oxygen saturation, oxygen usage and distance every 30 seconds for the whole six minutes. This gives them an idea of how "disabled" you are. I think they should add a video element to the LAS. To see me cough gives a very clear picture of my dis-ease.]
Ideally, I would get called NOW and wouldn't have to do it! :) I was hoping that the holiday weekend might offer at least a call to me or my friend CysticGal - but no luck as of yet. She has had two dry runs so far. I feel like it's her turn. Or mine. I have been waiting for over two years. I told CysticGal that I feel like we are the last two to get picked for kickball. In all reality, that probably would be the case, since neither one of us would really have a lot to offer an athletic team. But that won't always be the case.
At the end of June, the CF community, nay, the world, lost a dear boy named Conner Reed Jones to CF. His mother shared via her blog, his passing, with amazing clarity and beauty. The world celebrated his life last Wednesday - all over people released red balloons for Conner. Red was his favorite color. His funeral service was even shared with the internet community. In it, his mother wrote the most beautiful and touching eulogy. Anyone who read or watched her family's journey would be touched. It's always sad to lose someone we love so much, especially a child, but her strength is a wonderful testament to her faith in God and in love - concepts which Conner knew well, despite his young age of seven. Which is why I released seven red balloons into the sky on Wednesday. Attached was a card, on which I wrote, so that whomever finds the balloons will know who Conner is and why he was so special. Watching the balloons float upward, I had to shed a tear or two - it was just that powerful.
Friday, July 2, 2010
Help me pack for transplant!
My senses tell me that transplant is on the horizon. I have a bag packed, but want to get some last minute input from those who have gone before me.
My plan: I will fly 2 hours from my hometown to Minneapolis. When I get there, if it's a go, what will I need with me immediately before and after surgery? Comforts? Bare minimum?
What did you bring when you got "the call"?
My plan: I will fly 2 hours from my hometown to Minneapolis. When I get there, if it's a go, what will I need with me immediately before and after surgery? Comforts? Bare minimum?
What did you bring when you got "the call"?
Friday, June 4, 2010
Miss Know-It-All
Wednesday morning when I woke up 10 minutes before my alarm, restless, and got out of bed. I couldn't figure out why my body didn't want to sleep anymore. Aha, Dad discovered it, the oxygen dewar had run out in the night - whoops. My sats weren't too bad, about 88%, so he switched it over to the other one. One doesn't last me very long anymore. I remember when I would go 2 weeks on one fill with only one dewar. Now it is 2 dewars filled weekly. My handy little Helios (which I fill from the dewar) keeps me supplied with oxygen while I'm out and about - though it doesn't last nearly as long as it needs to, and is quite heavy and cumbersome.
I decided I'd at least get up and do a vest and my nebs before I went back to sleep. For some strange reason I never did go back and lay down, instead, leisurely getting myself ready to leave the house to run some errands and go to the doctor later. It was a very productive appointment, as we were able to discuss my hospital stay, the things which were good and also the areas that needed improvement. The good thing about being the squeaky (or maybe bossy) wheel when you're in the hospital is that things get done, and if you're lucky, they change. I was SO lucky to have such willing staff, that they listened to my concerns, met my needs (with very little attitude, for as much as I was dishing out) and were eager to make the changes necessary to better understand and meet the needs of patients in the future. It may be only a job to some, but to me, it's my life - I can't always wait for the next shift to say something!
At the appointment, I mentioned that since I had been diagnosed with diabetes 12 years ago, I could probably do with a refresher diabetes education course. They agreed and had the diabetes specialist come talk to me before I left. She brought with her a handy little booklet that I had never seen before called "Managing Cystic Fibrosis-Related Diabetes"... Apparently they know much more about it now! Great! She held it up and asked if I still had one - I've never even seen it! I all but snatched it away from her. I was so excited to get my hands on something that would help me better control my diabetes. For those of you with CFRD, I recommend asking one of your docs about this booklet. It's put out by the CFF.
I decided I'd at least get up and do a vest and my nebs before I went back to sleep. For some strange reason I never did go back and lay down, instead, leisurely getting myself ready to leave the house to run some errands and go to the doctor later. It was a very productive appointment, as we were able to discuss my hospital stay, the things which were good and also the areas that needed improvement. The good thing about being the squeaky (or maybe bossy) wheel when you're in the hospital is that things get done, and if you're lucky, they change. I was SO lucky to have such willing staff, that they listened to my concerns, met my needs (with very little attitude, for as much as I was dishing out) and were eager to make the changes necessary to better understand and meet the needs of patients in the future. It may be only a job to some, but to me, it's my life - I can't always wait for the next shift to say something!
At the appointment, I mentioned that since I had been diagnosed with diabetes 12 years ago, I could probably do with a refresher diabetes education course. They agreed and had the diabetes specialist come talk to me before I left. She brought with her a handy little booklet that I had never seen before called "Managing Cystic Fibrosis-Related Diabetes"... Apparently they know much more about it now! Great! She held it up and asked if I still had one - I've never even seen it! I all but snatched it away from her. I was so excited to get my hands on something that would help me better control my diabetes. For those of you with CFRD, I recommend asking one of your docs about this booklet. It's put out by the CFF.
I was explaining to a friend of mine yesterday afternoon that I love learning, but then I corrected myself, instead stating that I love knowing things. As far as I know, there is no way to download information instantly to my brain, so I either have to hear it or read it before I can pass it on. I recently went on a book binge. One of the 9 books I purchased is called Sick Girl Speaks! I have only made it about 35 pages so far, but I wish I were finished with it so I could know everything inside. It's not that reading isn't a pleasurable way to spend my idle time (of which I have much), it's just that there's simply not enough time to read everything I want to know. (I'm not blessed with the speed-reading gene) And the more I read, the more I realize I don't know. And what you don't know can definitely hurt you.
Almost forgot the PFT update: FEV1 31%, FVC 50%... I'll take it! :)
Friday, May 28, 2010
Home Sweet Home
Yesterday I broke out of jail. No, not really, I would never call the hospital jail... let me start again. Yesterday I came home from my amazing and health-restoring vacation. It was a wonderful two weeks, full of educating the uneducated and, well, coughing! I coughed so much more than any other patient anyone had seen. That's how I get better! At least it made them feel like they were making a difference. Some of the respiratory therapists who had me were shocked that I wanted CPT (chest physical therapy) longer than 10 minutes (or 1 minute per lobe/position)! I was shocked that no one had ever requested it or taught them differently. So what did I do? Educated everybody who handed me a nebulizer (except for the two wonderful ladies I met who could have written the book on being a good RT: Mary Catherine and Diana R. - you ladies rock!!) I was even asked one of the most ridiculous questions I've ever heard out of an RT's mouth: "Have you had CF since childhood, or did you acquire it later?" I know he didn't understand that CF is a genetic disease, because he didn't ask when I was diagnosed or even when I got sick. He asked if I "acquired" it. Now, I posed this issue to a lot of other CFers and many say it's common to get that question - and this alarmed me.
From a Respiratory Therapist, that question should be automatic grounds for re-enrollment in school. How can you take care of a CF patient properly if you don't know why they are there? The patient has lots of STICKY (more so than healthy people) mucus in the lungs. "But Justine" you may ask, "why is it stickier than healthy peoples' mucus?" Well I'm glad you asked, it's because of a defective mutation (actually two, one would still produce the phenotype of a healthy non-CFer) in the CFTR (Cystic fibrosis transmembrane conductance regulator) gene which causes chloride channels to trap chloride, and thus attract sodium to neutralize them both into - SALT!
Now I digress to ask you a question: What happens when you pour salt on a slug?.... Yes, it dries up.
Now back to my lungs: If chloride is trapped inside the excretory cells (lungs, sinuses etc), the salt forms and the water, instead of being freely excreted into the airways to form mucus, is not as free to flow because it is drawn to the salt in an attempt to create a homogenous salt water concentration on both sides of the cell wall. Result: stickier (drier) mucus.
End of science lesson.
If an RT doesn't know CF is genetic, they wouldn't know that we have sticky mucus, nor why we have persistent lung infections (bacteria thrive in moist, dark, undisturbed places). For all they know, we just have a bad cough, and they wouldn't be able to give us the kind of treatment we need, because they weren't aware of the root problem.
Please, the next time someone in the medical field doesn't know about CF, and should, educate them! Even if it's a simplified, two sentence explanation. It's really sad to think about how many people aren't getting the care they need! I know I am an overly involved patient, but you can't expect anyone else to be your (or your child's) advocate.
All in all, it was a great vacation. My PFTs yesterday morning were an FEV1(function) of 32% and an FVC(capacity) of 51%! Great, especially considering how sick I was when I went into the hospital. My port is healed and I was given thorough lessons on accessing and deaccessing, even doing it once myself. After two weeks it's healed very nicely, although it's still tender. I'm hoping that as it heals, the scar tissue will solidify it's placement. I took the advice of many other CFers with ports and cut a hole in a sponge to put over my port when using the vest. I tried it today, and it's still too tender for that, so I have been unhooking the shoulder velcro.
From a Respiratory Therapist, that question should be automatic grounds for re-enrollment in school. How can you take care of a CF patient properly if you don't know why they are there? The patient has lots of STICKY (more so than healthy people) mucus in the lungs. "But Justine" you may ask, "why is it stickier than healthy peoples' mucus?" Well I'm glad you asked, it's because of a defective mutation (actually two, one would still produce the phenotype of a healthy non-CFer) in the CFTR (Cystic fibrosis transmembrane conductance regulator) gene which causes chloride channels to trap chloride, and thus attract sodium to neutralize them both into - SALT!
Now I digress to ask you a question: What happens when you pour salt on a slug?.... Yes, it dries up.
Now back to my lungs: If chloride is trapped inside the excretory cells (lungs, sinuses etc), the salt forms and the water, instead of being freely excreted into the airways to form mucus, is not as free to flow because it is drawn to the salt in an attempt to create a homogenous salt water concentration on both sides of the cell wall. Result: stickier (drier) mucus.
End of science lesson.
If an RT doesn't know CF is genetic, they wouldn't know that we have sticky mucus, nor why we have persistent lung infections (bacteria thrive in moist, dark, undisturbed places). For all they know, we just have a bad cough, and they wouldn't be able to give us the kind of treatment we need, because they weren't aware of the root problem.
Please, the next time someone in the medical field doesn't know about CF, and should, educate them! Even if it's a simplified, two sentence explanation. It's really sad to think about how many people aren't getting the care they need! I know I am an overly involved patient, but you can't expect anyone else to be your (or your child's) advocate.
All in all, it was a great vacation. My PFTs yesterday morning were an FEV1(function) of 32% and an FVC(capacity) of 51%! Great, especially considering how sick I was when I went into the hospital. My port is healed and I was given thorough lessons on accessing and deaccessing, even doing it once myself. After two weeks it's healed very nicely, although it's still tender. I'm hoping that as it heals, the scar tissue will solidify it's placement. I took the advice of many other CFers with ports and cut a hole in a sponge to put over my port when using the vest. I tried it today, and it's still too tender for that, so I have been unhooking the shoulder velcro.
Friday, May 14, 2010
Port
This morning I was awoken out of a dead sleep at 6 to my nurse flipping on the lights, "They're ready for you in 30 minutes." It's port time! I had them page respiratory so I could get an albuterol neb before they took me... gotta breathe, right? The cute resident who came and talked to me yesterday was down in pre-op. :D He answered the rest of my million questions to the best of his ability - I'm a pretty involved patient (translation: control freak), so he wasn't really prepared to deal with me. They wheeled me into the OR, I climbed onto the table and laid down. They gave me some versed and started to wrap me up, "like a burrito". The last thing I remember was muttering something about having a fallback career lined up at Chipotle. When I woke up, I had some pain and a kickass incision near my shoulder:
Thursday, May 13, 2010
I've fallen in love... with a new nebulizer!
A Breath Actuated Nebulizer... how cool is that? There is no waste, whatsoever, and the treatment time is fast - faster than any neb I've ever had! When you breathe in, the neb cup with the medicine pushes down on the air supply, nebulizing the medication, and when you breathe out, it lets up. SO cool! It's called the AeroEclipse and I'm going to get a script for them when I leave. I have been doing research on nebs tonight and was wondering if anyone had any experience with using this neb with Tobi?
Also, I'm set for getting my port a cath in the morning, so I'll make sure to update, hopefully with a picture of it!
Tune up time
Went to the doctor yesterday, the PFTs were WAY down. I think they are at my lowest, FEV1(function) at 23% and FVC(capacity) 32%. I'm getting admitted to the hospital today. While I'm here I'll be getting a port a cath so I won't have to get any more PICC lines (yay!). I'll update more once I get checked in and settled. xoxo
Tuesday, May 11, 2010
Cupcake Disaster
Disclaimer: No one was harmed in the making of these baked "goods", but our egos were slightly damaged.
Several weeks back I was in Barnes & Noble collecting as many books as I could carry and I picked up this little book of cupcake recipes - a purely impulsive purchase.
Anyway, when I got home, as I flipped through all (okay there were only 26) the recipes, I had fantasies of becoming the cupcake lady, baking delicious, decorative treats for everyone I know, going into business and acquiring fame and fortune, all because of a bargain book I grabbed on a whim. Famous and important people would be BBMing me their orders and twittering about my amazing cupcakes......
...sorry, I'm back.
Reality: Today I had the idea I would bake some cupcakes (maybe 12 to start) and take them with me tonight when I headed out. I grabbed my book and passed my dad's study on the way downstairs, "I'm going to make cupcakes."
"Do you want some help?"
"Yeah, could you come show me how to turn on the oven?" (I'm serious about this part, we had a conversation yesterday about the fact that I didn't know how to operate the folks' new fancy stove, which we have had longer than the 10 months I have been back living with them.)
"No, but I'll show you how."
As the oven preheats, we're taking turns with the electric mixer trying to get the god damn eggs and sugar to become fluffy. We already quarreled about the size of the eggs, the recipe called for large and we had jumbo. Dad (chemist that he is) said the egg to sugar ratio was too high. I said it was fine and continued mixing.
Cut to 45 minutes later, we're still cleaning up glass shards and jam residue from the floor. Dad had one of those dropsy days... when no amount of moisturizer can cure the dry, slippery finger tips. After sweeping, vacuuming, 409ing and swiffer wet mopping, we get back to the business of these damn cupcakes, which we have, by now, lost all motivation in baking.
After combing all the ingredients and looking at all the muffin tins we have to fill with this piddly amount of batter, we go ahead and continue following the directions, suspending disbelief for the time being. "They'll fluff up in the oven"...
Rationing batter is hard enough as it is, but doing so when you have to save half to fill on top of a dollop of jam is just ridiculous. We split the batter in two and got to filling. I'm at 18 and out of batter, yet each cup that has batter doesn't even have enough to cover the bottom of the freaking cup. Just follow the f*cking directions. Dollop of jam, done... top half of batter, also done. We even had enough to make 4 more whole "cupcakes" bringing the grand total to 22, two shy of the recipe's indication.
Popped those suckers in the oven for 15 minutes and hoped for the best.
I took this opportunity to satisfy Zoe's incessant need to go outside and sit motionless in the yard. I wrestled her into her walking jacket and we headed out on the leash (more about this genius idea another time). We make the rounds, she eats some grass and then sits under a tree for 5 minutes. I finally started walking up to her to bring her in and spotted half of a robin's egg nearby. I picked it up (yes, birds are disgusting and I washed my hands thoroughly afterward) and was going to carry it inside to show Dad (what else was I going to do, leave it there and mention it to no one?) I was so excited that I stepped on Zoe's leash as I went down to pick her up and it jerked my arms as I came back up.... *crunch* Stupid egg - it was so fragile! I brought the cat back in and threw the remnants of the egg on the outdoor table.
Time to check the cupcakes!
Well.. they're certainly small. But good things come in small packages, right? I was too excited to try one to wait for them to cool... or to bother dusting with powdered sugar. I managed to get it out of the paper in almost one piece, but the jam was adhered to the bottom, which was, uh, chewy. Not a word I want to describe a cupcake I'm about to consume. It was terrible. The jam had dried up and the cake portion was so dry I nearly choked. Dad said it was like corn bread, with a little jam on top (that is after you scraped it off the paper, if you even bothered). It was so little, I couldn't even call it a muffin... it was more of a dry, puffy cookie in a big paper bowl. I should have been suspicious when the book was marked down to $6.
So needless to say, I'm not bringing delightful cupcakes to anyone tonight.
Several weeks back I was in Barnes & Noble collecting as many books as I could carry and I picked up this little book of cupcake recipes - a purely impulsive purchase.
Anyway, when I got home, as I flipped through all (okay there were only 26) the recipes, I had fantasies of becoming the cupcake lady, baking delicious, decorative treats for everyone I know, going into business and acquiring fame and fortune, all because of a bargain book I grabbed on a whim. Famous and important people would be BBMing me their orders and twittering about my amazing cupcakes......
...sorry, I'm back.
Reality: Today I had the idea I would bake some cupcakes (maybe 12 to start) and take them with me tonight when I headed out. I grabbed my book and passed my dad's study on the way downstairs, "I'm going to make cupcakes."
"Do you want some help?"
"Yeah, could you come show me how to turn on the oven?" (I'm serious about this part, we had a conversation yesterday about the fact that I didn't know how to operate the folks' new fancy stove, which we have had longer than the 10 months I have been back living with them.)
"No, but I'll show you how."
As the oven preheats, we're taking turns with the electric mixer trying to get the god damn eggs and sugar to become fluffy. We already quarreled about the size of the eggs, the recipe called for large and we had jumbo. Dad (chemist that he is) said the egg to sugar ratio was too high. I said it was fine and continued mixing.
Cut to 45 minutes later, we're still cleaning up glass shards and jam residue from the floor. Dad had one of those dropsy days... when no amount of moisturizer can cure the dry, slippery finger tips. After sweeping, vacuuming, 409ing and swiffer wet mopping, we get back to the business of these damn cupcakes, which we have, by now, lost all motivation in baking.
After combing all the ingredients and looking at all the muffin tins we have to fill with this piddly amount of batter, we go ahead and continue following the directions, suspending disbelief for the time being. "They'll fluff up in the oven"...
Rationing batter is hard enough as it is, but doing so when you have to save half to fill on top of a dollop of jam is just ridiculous. We split the batter in two and got to filling. I'm at 18 and out of batter, yet each cup that has batter doesn't even have enough to cover the bottom of the freaking cup. Just follow the f*cking directions. Dollop of jam, done... top half of batter, also done. We even had enough to make 4 more whole "cupcakes" bringing the grand total to 22, two shy of the recipe's indication.
Popped those suckers in the oven for 15 minutes and hoped for the best.
I took this opportunity to satisfy Zoe's incessant need to go outside and sit motionless in the yard. I wrestled her into her walking jacket and we headed out on the leash (more about this genius idea another time). We make the rounds, she eats some grass and then sits under a tree for 5 minutes. I finally started walking up to her to bring her in and spotted half of a robin's egg nearby. I picked it up (yes, birds are disgusting and I washed my hands thoroughly afterward) and was going to carry it inside to show Dad (what else was I going to do, leave it there and mention it to no one?) I was so excited that I stepped on Zoe's leash as I went down to pick her up and it jerked my arms as I came back up.... *crunch* Stupid egg - it was so fragile! I brought the cat back in and threw the remnants of the egg on the outdoor table.
Time to check the cupcakes!
Well.. they're certainly small. But good things come in small packages, right? I was too excited to try one to wait for them to cool... or to bother dusting with powdered sugar. I managed to get it out of the paper in almost one piece, but the jam was adhered to the bottom, which was, uh, chewy. Not a word I want to describe a cupcake I'm about to consume. It was terrible. The jam had dried up and the cake portion was so dry I nearly choked. Dad said it was like corn bread, with a little jam on top (that is after you scraped it off the paper, if you even bothered). It was so little, I couldn't even call it a muffin... it was more of a dry, puffy cookie in a big paper bowl. I should have been suspicious when the book was marked down to $6.
So needless to say, I'm not bringing delightful cupcakes to anyone tonight.
Sunday, May 2, 2010
I can breathe!
Good news: I'm on the mend! I woke up this morning and could actually breathe. I'm still pretty wheezy, with a lot of congestion, but it's moving and I can clear some, which is more than I can say about yesterday. I feel like I've coughed for days straight, my lungs and throat ache. I had energy and an appetite, too. Dad brought me breakfast from McDonald's this morning and I ate first thing after I got out of bed, which may have been a mistake because I didn't get around to doing a vest treatment until 3pm. I mostly puttered around on the internet and watched my parents figure out their new Topsy Turvy planters from inside. I had a friend suggest I go out in the sun and get some Vitamin D. I would love that but there are several reasons I don't go out in the sun:
1) I'm fair skinned
2) I'm on a medication that makes me even more sensitive to the sun than I already am
3) As I plan to become a post-transplant patient someday, I know that I will be immuno-suppressed from then on. My body will be less able to fight off cancers, including those caused by sun damage. All of my past sun exposure is working against me, so I've got to be careful. I'm so glad Aveeno has come out with some high SPF sunblocks!
Therefore, I stayed inside most of the day. Before dinner I got a spurt of energy and decided to get out of the house and make a run to Walgreen's, as I had 8 prescriptions to pick up. While I was out I filled up my car with gas and ran it through the car wash.... so now I'm expecting it'll rain tonight or tomorrow.
One more shameless promotion (or demotion): my Blackberry somehow reset, and while I still have phone numbers, all of my pictures and ringer settings are gone, so I keep jumping every time my phone makes an unexpected noise.
Nike!
Ok I'm done.
1) I'm fair skinned
2) I'm on a medication that makes me even more sensitive to the sun than I already am
3) As I plan to become a post-transplant patient someday, I know that I will be immuno-suppressed from then on. My body will be less able to fight off cancers, including those caused by sun damage. All of my past sun exposure is working against me, so I've got to be careful. I'm so glad Aveeno has come out with some high SPF sunblocks!
Therefore, I stayed inside most of the day. Before dinner I got a spurt of energy and decided to get out of the house and make a run to Walgreen's, as I had 8 prescriptions to pick up. While I was out I filled up my car with gas and ran it through the car wash.... so now I'm expecting it'll rain tonight or tomorrow.
One more shameless promotion (or demotion): my Blackberry somehow reset, and while I still have phone numbers, all of my pictures and ringer settings are gone, so I keep jumping every time my phone makes an unexpected noise.
Nike!
Ok I'm done.
Saturday, May 1, 2010
Ill and puny
When I was in lower school and early childhood, kids who were sick didn't go to "the nurse", they went to the "Ill and Puny", a room with a cot by the principal's office. I can't actually remember if there was ever a sign that said that, but that's what my dad and I called it. So, today, this is my status. Thursday I started getting tighter and more congested in my chest, lots of unproductive coughing, sore throat, labored breathing. Since then it's gotten steadily worse. That being the case, I haven't left home since Thursday morning. I finally mustered the energy for a shower tonight after a meager dinner. It felt good, since I've just felt fuzzy from sleeping so much, but it took a lot out of me. So much so, that my dad offered to dry my hair - and I let him. He hasn't done that for a good 15 years! I'm hoping I feel better tomorrow; I don't want to go in the hospital. :(
I am le tired... signing off now.
I am le tired... signing off now.
Wednesday, April 28, 2010
Appointment update
Today I had a clinic appointment, more out of habit than necessity. Last week I started with a tickle in my throat, then a sore throat, then nasal congestion (and loss of smell). Today I could smell (and taste) but I was very congested in my chest, so I'm glad I had the appointment pre-booked. My PFTs were down a little, FEV1 down to 28% (function) and FVC at 42% (capacity). Not time for antibiotics yet, but I'm going to keep an eye on it.
Also, the headaches have returned. The last time they hung around, I had an MRI done and began the sinus rinses...I had an ABG (arterial blood gas) drawn today to check my CO2 levels. If my body isn't getting rid of enough carbon dioxide, it will build up in my blood, which can be lethal. I'll hopefully hear something tomorrow.
That's about it for me tonight - I'm ready for bed.
Also, the headaches have returned. The last time they hung around, I had an MRI done and began the sinus rinses...I had an ABG (arterial blood gas) drawn today to check my CO2 levels. If my body isn't getting rid of enough carbon dioxide, it will build up in my blood, which can be lethal. I'll hopefully hear something tomorrow.
That's about it for me tonight - I'm ready for bed.
Sunday, April 25, 2010
Don't Drink the Water
Someone brought to my attention today, a notice that Wichita Water Utilities customers received (beginning 3/25). I'll sum it up with some direct quotes:
Our water system recently violated a drinking water standard...We routinely monitor our water for turbidity (cloudiness). This tells us whether we are effectively filtering the water supply...If you have a severely compromised immune system, have an infant, are pregnant, or are elderly you may be at increased risk and should seek advice form your health care provider about drinking this water... This is not an emergency... turbidity can interfere with disinfection and provide a medium for microbial growth. Turbidity may indicate the presence of disease causing organisms... Steps have been taken... Turbidity measurements have returned to normal and we expect to be in compliance in April.
Um. WHAT? You mean the water I have been using to brush my teeth, cook, clean my food and body isn't clean?
I don't know anything about water treatment or related legal guidelines, so this may be a normal, acceptable occurrence - but to me, as a customer and as someone who is at high risk for infections, I'm alarmed. There are no other options - I can't shower with bottled water, nor can I avoid washing dishes, clothes, food, etc. in the water the city is supposed to be treating to meet certain health standards.
I don't know why they even bothered to tell us this happenED. Why would they alarm the public about something that we can't do anything about, and isn't an issue any longer, unless it were something very serious. I know, some of you probably don't think it's a big deal. After all, people years ago didn't have the luxury of chemically-treated, government-regulated city water, they drank the well water, organisms and all. Some people may argue that it's good to get a little dirty water every now and then to boost the immune system... which is a load of crap. Bacteria is bacteria, and when you're infected with E. coli or C. diff, then tell me how healthy you feel.
I'm probably over-reacting - but I definitely won't be drinking the water.
UPDATE 5/3:
Now that Boston's water main break has happened and they were without clean water for a couple days, I feel like my freak-out is a little unwarranted. *sheepish look*
Our water system recently violated a drinking water standard...We routinely monitor our water for turbidity (cloudiness). This tells us whether we are effectively filtering the water supply...If you have a severely compromised immune system, have an infant, are pregnant, or are elderly you may be at increased risk and should seek advice form your health care provider about drinking this water... This is not an emergency... turbidity can interfere with disinfection and provide a medium for microbial growth. Turbidity may indicate the presence of disease causing organisms... Steps have been taken... Turbidity measurements have returned to normal and we expect to be in compliance in April.
Um. WHAT? You mean the water I have been using to brush my teeth, cook, clean my food and body isn't clean?
I don't know anything about water treatment or related legal guidelines, so this may be a normal, acceptable occurrence - but to me, as a customer and as someone who is at high risk for infections, I'm alarmed. There are no other options - I can't shower with bottled water, nor can I avoid washing dishes, clothes, food, etc. in the water the city is supposed to be treating to meet certain health standards.
I don't know why they even bothered to tell us this happenED. Why would they alarm the public about something that we can't do anything about, and isn't an issue any longer, unless it were something very serious. I know, some of you probably don't think it's a big deal. After all, people years ago didn't have the luxury of chemically-treated, government-regulated city water, they drank the well water, organisms and all. Some people may argue that it's good to get a little dirty water every now and then to boost the immune system... which is a load of crap. Bacteria is bacteria, and when you're infected with E. coli or C. diff, then tell me how healthy you feel.
I'm probably over-reacting - but I definitely won't be drinking the water.
UPDATE 5/3:
Now that Boston's water main break has happened and they were without clean water for a couple days, I feel like my freak-out is a little unwarranted. *sheepish look*
Wednesday, April 21, 2010
Daily Reminders
Even on days when I'm feeling (relatively) well there are always little (and sometimes big) reminders of my illness.
For starters, I wake up and cough. And I don't mean clear my throat... I mean COUGH - braced and hunching over until I'm red in the face, gasping for breath cough. This happens whenever I wake up, so if I stir in the night, it happens. I'll be up for 5 or 10 minutes just coughing so I can be clear enough to lay back down. Another 10 minutes to fall asleep, if I'm lucky.
When I get up in the morning, the first thing I do (after going to the bathroom and grabbing a soda) are my breathing treatments. This consists of aerosolized medications and a vest treatment - the vest shakes my chest to help loosen the congestion so I can cough it up. This takes anywhere from an hour to two hours - and can be exhausting if I'm really congested.
Then I can start my day.
Get food (Need those calories to maintain my weight - coughing burns a LOT of calories). Did I mention I wear oxygen? I didn't. Ok - I wear oxygen. I don't notice it so much when I'm sitting in one place, but when I begin to move around the house, the tubing leash I have trailing me can get caught, stepped on or run out. Making food in the kitchen is a hassle, because it reaches just to the refrigerator, but not the stove, cutting board, dishwasher or sink... convenient when I don't want to clear my dishes, but not so much when I'm alone. Off comes the oxygen.
After eating, I pop pills and shoot up. No, seriously. I take about 15 different pills every day... many of them multiple times a day. I won't list them all, so you'll have to just trust me on this. I also have CF related Diabetes for which I take insulin shots whenever I eat. These two things are probably the easiest part of my health maintenance, and I'm really looking forward to a day when that's ALL I'll have to do.
One difficult part about CF is that because I need so many calories, I'm often eating a large volume in one sitting, which makes it difficult to breathe. With the stomach pressing against the diaphragm and lungs, I end up having to cough and clear after meals. Which is okay if I plan to be near a trash can or toilet. Yeah, sometimes I cough until I barf. Although that has happened a lot less since I had my gall bladder (which would swell after eating) removed.
Before I get myself ready to leave the house, I have to make sure I fill up my portable oxygen device an hour before I plan to need it. It has to build up pressure to be able to function properly, and if I'm unable to use it, my blood oxygen saturation will drop and that causes the heart to work too hard (and the last thing I need is a heart transplant, too!).
When I leave the house, it's usually time to give another good cough. I often purposely cough when I'm driving places so I won't have to when I get where I'm going. One of the hardest things for me to deal with is coughing in public. I hate to gross people out or worry them. People think I'm choking and get really alarmed when I have a coughing fit. I find myself giving the dorky thumbs-up just to get them to leave me alone until I catch my breath. I hate having to justify it afterward, "Oh yeah, that's normal for me. And it's not contagious."
When I'm home during the day, a lot of times I take a nap, which for me symbolizes starting my day over: I get up, cough, and do a breathing treatment. The added exertion from coughing and struggling to oxygenate my blood often wears me out in just a few hours out of the house and I need naps!
Before bed, it's the same routine as the morning: breathing treatments, vest and bedtime snack (food).
I share this, hoping that more people will understand when someone says, "I have Cystic Fibrosis". It's not just a label, it's a lifestyle.
For starters, I wake up and cough. And I don't mean clear my throat... I mean COUGH - braced and hunching over until I'm red in the face, gasping for breath cough. This happens whenever I wake up, so if I stir in the night, it happens. I'll be up for 5 or 10 minutes just coughing so I can be clear enough to lay back down. Another 10 minutes to fall asleep, if I'm lucky.
When I get up in the morning, the first thing I do (after going to the bathroom and grabbing a soda) are my breathing treatments. This consists of aerosolized medications and a vest treatment - the vest shakes my chest to help loosen the congestion so I can cough it up. This takes anywhere from an hour to two hours - and can be exhausting if I'm really congested.
Then I can start my day.
Get food (Need those calories to maintain my weight - coughing burns a LOT of calories). Did I mention I wear oxygen? I didn't. Ok - I wear oxygen. I don't notice it so much when I'm sitting in one place, but when I begin to move around the house, the tubing leash I have trailing me can get caught, stepped on or run out. Making food in the kitchen is a hassle, because it reaches just to the refrigerator, but not the stove, cutting board, dishwasher or sink... convenient when I don't want to clear my dishes, but not so much when I'm alone. Off comes the oxygen.
After eating, I pop pills and shoot up. No, seriously. I take about 15 different pills every day... many of them multiple times a day. I won't list them all, so you'll have to just trust me on this. I also have CF related Diabetes for which I take insulin shots whenever I eat. These two things are probably the easiest part of my health maintenance, and I'm really looking forward to a day when that's ALL I'll have to do.
One difficult part about CF is that because I need so many calories, I'm often eating a large volume in one sitting, which makes it difficult to breathe. With the stomach pressing against the diaphragm and lungs, I end up having to cough and clear after meals. Which is okay if I plan to be near a trash can or toilet. Yeah, sometimes I cough until I barf. Although that has happened a lot less since I had my gall bladder (which would swell after eating) removed.
Before I get myself ready to leave the house, I have to make sure I fill up my portable oxygen device an hour before I plan to need it. It has to build up pressure to be able to function properly, and if I'm unable to use it, my blood oxygen saturation will drop and that causes the heart to work too hard (and the last thing I need is a heart transplant, too!).
When I leave the house, it's usually time to give another good cough. I often purposely cough when I'm driving places so I won't have to when I get where I'm going. One of the hardest things for me to deal with is coughing in public. I hate to gross people out or worry them. People think I'm choking and get really alarmed when I have a coughing fit. I find myself giving the dorky thumbs-up just to get them to leave me alone until I catch my breath. I hate having to justify it afterward, "Oh yeah, that's normal for me. And it's not contagious."
When I'm home during the day, a lot of times I take a nap, which for me symbolizes starting my day over: I get up, cough, and do a breathing treatment. The added exertion from coughing and struggling to oxygenate my blood often wears me out in just a few hours out of the house and I need naps!
Before bed, it's the same routine as the morning: breathing treatments, vest and bedtime snack (food).
I share this, hoping that more people will understand when someone says, "I have Cystic Fibrosis". It's not just a label, it's a lifestyle.
Tuesday, April 20, 2010
i love the interwebz
I'm so thankful that spring is here! Life is just better when it's not cold outside. The past few days I have felt amazingly well - my oxygen sats have even been better. It seems to be transplant season, too! Two of my good CF friends have gotten new lungs in the past 32 days. Following other CFers' stories and pictures surrounding transplant, I feel like I'm practicing for my own transplant. I'm becoming familiar with the process from getting the call to dry runs to recovery. Thank god (or maybe Al Gore?) for the internet - it's become such an important tool in networking for CF patients. Doctors tend to discourage contact among CFers because of the risk of exposure to new bacteria (which grow easily in the lungs, causing more infection and scarring), so through blogs and chat and facebook groups, I have been able to meet and share experiences with dozens of CFers whom I would have never had the chance to otherwise meet. (It helps that I'm already at the computer doing vest and aerosol treatments for several hours a day)
Tuesday, March 23, 2010
Great news
After what seemed like Forever, I got my cepacia test results back and they were NEGATIVE! I have never been more relieved in my life. I was re-activated on the transplant list also, today! Now I need to get my back re-packed and back into my car so that I'm ready when I get my call!
Thursday, March 18, 2010
inactive, again
I'm inactive on the transplant list until they know more about which cepacia bacteria I cultured. I will post again when I hear more news.
Friday, March 12, 2010
At the doctor's office I had to wear a lovely mask, and everyone who had contact with me wore mask, gown and gloves. I felt like I had the plague or something. We discussed what action they were taking. Since it's so rare, my doctor has been and will be consulting with other CF centers to learn how they handle their patients with cepacia and what the protocol is for treatment. They took another sputum culture and will send both that one and the one from a week earlier to a special lab in Michigan that deals exclusively with cepacias so they can identify which strain it is. The wait could be a short as one week but as long as 8 weeks! He told me not to worry, though, because there are different strains of cepacia and there is a chance that it isn't the aggressive B. Cepacia. And if that's the case, they may be able to treat it and I'd still be eligible for transplant. So until I know, keep me in your prayers. I need all the help I can get!!
Thursday, March 11, 2010
bad day
I got my PICC line put in, with absolutely NO complications, which is a first. Later on in the day on Thursday I get a call from the nurse at the CF clinic. She said that my doctor wanted to see me Friday. After some questioning about why on earth he wanted to see me, because he had just seen me the day before, I knew in my gut that something was wrong. I emailed my doctor and he asked if he could call me. Right away, I asked, "Did I culture cepacia?" and he told me I did. Needless to say the next 24 hours I was an emotional wreck.
Wednesday, March 10, 2010
back to basics
I went to the doctor here in Wichita to get PFT (pulmonary function tests) done. My lung function was down a bit to 27%, capacity to 39%. Also, I asked my doctor flat out "Did I culture cepacia?" and he said NO! Which was a HUGE relief! I decided to go on IV antibiotics and we got it set up to start tomorrow. Hopefully the PICC placement will go smoothly, since they don't sedate here.
Tuesday, March 9, 2010
absence of pain
Yesterday was my first day without a headache! But my chest congestion is still pretty bad. My O2 sats have been low without oxygen so I've had to put on my "big girl panties" and wear it in public. :( I know I really do need it.
Friday, March 5, 2010
another appointment
I went to the clinic to give a sputum sample (aka, spit in a cup. yeah, i know, real attractive) so they can determine which organisms (viruses, bacteria, fungi) I have in my lungs. The main two reasons I wanted to have one done were a) because I wasn't getting over this cold I had been fighting and b) I wanted to make sure that I tested negative for a certain strain of bacteria (Burkholderia cepacia) which would make me ineligible for transplant. And that would be BAD NEWS.
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