2 weeks ago she died....
1 week ago I was at her service, so many miles from home...
And today, I had my worst lung function tests, I think ever. FEV1 of 32% I think. Ugh. My CF team is not worried yet, as I look good, and I feel good, and I am having a definite flare in my sinuses that may be compromising my lungs. Also given the tests were the first thing in the morning, when I always have trouble. So since I still feel good, we are trying 2 weeks of Cipro and a month of Septra, both oral antibiotics. Hopefully in a week I won't be coughing as much. I am also being referred to have a sleep study as I think I may be dropping my oxygen saturation at night. I am always sore and achy, I have some headaches, some blue fingertips, and it just makes me wonder.
I know, not a good update. But really, the facts sound harsher than the reality. I still don't feel bad. I was able to play with my "nephews" in Portland, the lovely sons of my long time BFF (one of two) Jenn, lug my luggage up the flight of stairs and back down, drive myself to clinic, and not feel terrible doing it. I am sore now, but that is becoming more the norm that I just deal with until we can find the root of it. I am so thankful that my life is in a good place right now. That I have so much love and support around me, and that I feel good to enjoy what I have.
Showing posts with label clinic. Show all posts
Showing posts with label clinic. Show all posts
Friday, February 20, 2009
Wednesday, September 10, 2008
Tune Up Time
Hey all!
So I'm writing this from the lovely confines of OHSU hospital... as is normal with CF, it was time for me to get a "tune-up". Some CFers rarely need them, while others need IV clean up several times a year. My body seems to need it about every year, and it's that time of year for me. I started feeling worse about a month ago and was put on oral antibiotics. They helped, but I declined rapidly after our return from Seattle (another forthcoming post). At my clinic appointment on Tuesday, I knew it was probably time, packed my bags, and my doctor and I decided it was time. Amazingly enough, despite how bad I feel and how bad my cough sounds compared to my normal, my lung function tests were not down. Usually an infection of this magnitude would make them terrible, and I would have a hard time gaining back what I lost. This time, by catching it before I decrease, I hope that I may even have improved function after. On another positive note, I have also gained a small amount of weight... unsual when I have been dealing with a persistant infection...
So even though I find myself in the hospital, I find myself incredibly blessed!
So I'm writing this from the lovely confines of OHSU hospital... as is normal with CF, it was time for me to get a "tune-up". Some CFers rarely need them, while others need IV clean up several times a year. My body seems to need it about every year, and it's that time of year for me. I started feeling worse about a month ago and was put on oral antibiotics. They helped, but I declined rapidly after our return from Seattle (another forthcoming post). At my clinic appointment on Tuesday, I knew it was probably time, packed my bags, and my doctor and I decided it was time. Amazingly enough, despite how bad I feel and how bad my cough sounds compared to my normal, my lung function tests were not down. Usually an infection of this magnitude would make them terrible, and I would have a hard time gaining back what I lost. This time, by catching it before I decrease, I hope that I may even have improved function after. On another positive note, I have also gained a small amount of weight... unsual when I have been dealing with a persistant infection...
So even though I find myself in the hospital, I find myself incredibly blessed!
Monday, June 16, 2008
Good Clinic
Went to CF clinic today. To be honest, I wasn't sure what to expect. Up until last week, I was pretty sure that I may end up in the hospital. The last few days, despite increasing severity of allergy symptoms, I thought maybe I'd avoid the hospital.
Well...
My lung function went up. It inched up, slightly, so that my total capacity is 52% of what would be expected for my weight and height, while the amount of air I can force out in the first second, the number my clinic is most interested in, was at 44%, also a gain from last time. My weight stayed stable... a good thing and a bad thing. At least I didn't go down, but I really need to put on weight. More working and struggling with that.
Thank you for your prayers. I jump in lung function in the peak of allergy season is a huge blessing.
Well...
My lung function went up. It inched up, slightly, so that my total capacity is 52% of what would be expected for my weight and height, while the amount of air I can force out in the first second, the number my clinic is most interested in, was at 44%, also a gain from last time. My weight stayed stable... a good thing and a bad thing. At least I didn't go down, but I really need to put on weight. More working and struggling with that.
Thank you for your prayers. I jump in lung function in the peak of allergy season is a huge blessing.
Sunday, May 11, 2008
Long Absence!
Alright, so I never intended to not post this long, but I've been out living life!
Since I last posted:
* I had a small bout of depression when I realized how much my health has slipped in three years time. I have always had small bouts like this where I fall into depression suddenly, then snap out just as suddenly. I'm back to normal me.
* I've decided that Elton John, Billy Joel, and Eric Clapton have a conspiracy to dislocate a finger of mine as I've been working on learning Circle of Life, Written in the Stars, Piano Man, and Wonderful Tonight on the piano. Hard but rewarding work. I've always thought of Piano Man as one piece I wanted to learn but never thought I would be good enough. I guess I am!
* Went back to the diabetes doctors. Since I had several high, but not starling high blood sugars, they decided that I would be fine without insulin, but I needed some form of management. So I was placed on Januvia, and newer pill designed for Type II diabetes. It has seemed to lower my blood sugars which is a super good thing.
* Went to CF clinic. My lung function was marginally down and my weight was the same. Lynn and I agree that with the combination of the weather changes, allergies, and a slight cold, my lungs took a beating, but were also doing surprisingly well. We decided that I probably would not need oral antibiotics, but she wants me to come back in a month to make sure that I am still remaining well.
* I shook Obama's hand! I've been interested in and inspired by him since his 2004 speech. He embodies much of my ideals in politics. I went and saw him his last swing through Eugene. I almost didn't go this time, but a strong voice in the back of my head told me to go. I was having trouble breathing when I arrived and I knew that walking the several blocks to the end of the line would be very painful. I spoke to some volunteers and staffers, and they allowed me to wait at the gate and cut to the front of the line... and I was right in front, 15 ft away from him while he spoke... then he came and shook hands.
* Otherwise, all is good. I should be posting pictures soon of my garden :) I have done a lot of work and have been rewarded with all of my veggie seeds sprouting and beginning to grow.
Since I last posted:
* I had a small bout of depression when I realized how much my health has slipped in three years time. I have always had small bouts like this where I fall into depression suddenly, then snap out just as suddenly. I'm back to normal me.
* I've decided that Elton John, Billy Joel, and Eric Clapton have a conspiracy to dislocate a finger of mine as I've been working on learning Circle of Life, Written in the Stars, Piano Man, and Wonderful Tonight on the piano. Hard but rewarding work. I've always thought of Piano Man as one piece I wanted to learn but never thought I would be good enough. I guess I am!
* Went back to the diabetes doctors. Since I had several high, but not starling high blood sugars, they decided that I would be fine without insulin, but I needed some form of management. So I was placed on Januvia, and newer pill designed for Type II diabetes. It has seemed to lower my blood sugars which is a super good thing.
* Went to CF clinic. My lung function was marginally down and my weight was the same. Lynn and I agree that with the combination of the weather changes, allergies, and a slight cold, my lungs took a beating, but were also doing surprisingly well. We decided that I probably would not need oral antibiotics, but she wants me to come back in a month to make sure that I am still remaining well.
* I shook Obama's hand! I've been interested in and inspired by him since his 2004 speech. He embodies much of my ideals in politics. I went and saw him his last swing through Eugene. I almost didn't go this time, but a strong voice in the back of my head told me to go. I was having trouble breathing when I arrived and I knew that walking the several blocks to the end of the line would be very painful. I spoke to some volunteers and staffers, and they allowed me to wait at the gate and cut to the front of the line... and I was right in front, 15 ft away from him while he spoke... then he came and shook hands.
* Otherwise, all is good. I should be posting pictures soon of my garden :) I have done a lot of work and have been rewarded with all of my veggie seeds sprouting and beginning to grow.
Monday, March 17, 2008
Hero of the Day and CFRD
So I've really started to kick it up on the fundraising side for my CF walk. Part of my campaign was to see if I could get a bunch of small donations from a shopping site that I'm a member of, Jellyfish. JF is a site that auctions off one item at a time, with the price going down, until someone buys it. There also is a chat component where people talk while the price ticks down. I started to use the chat to share my story, this site, and the link to donate to my CF walk. I quickly had numerous donations rolling in and I was touched. Today I was nominated for Smack Hero, which is ceremonial by nature, but also gets the word of CF awareness out there which is something that is deeply meaningful and touching to me.
On the health front, I've started my path down the road of dealing with my CFRD (CF-related diabetes). I've always known that I was at high risk for CFRD. The older us CF patients get, the more our risk goes up at developing diabetes. This is mainly because with the CF affecting the pancreas, it slowly slows down, and decreases it's production of insulin. I've ran some high blood sugars for years, but finally at my last fasting glucose test it was determined that while I do not fully have CFRD yet, I am glucose intolerant, meaning my body does not process blood sugar as quickly as needed.
I had my first appointment with the endocrine team at OHSU on Wednesday. Right now they are still formulating a plan of action. I'll be going back up to OHSU on Wednesday, where I'll be meeting with the diabetes educator. They will most likely have more diet changes for me besides cutting out Pepsi which I have been fairly successful at. I'll also be getting a meter, which I'll probably have to use intensely for 6 weeks. We'll be working on determining if I can control my CFRD through diet, if I need pills to stimulate insulin production, or if I need to go all the way to shots. I'm not looking forward to doing the monitoring, but I don't have a choice, so I'll have to accept it and move on. Something that I'm fairly used to at this point. I just hate not knowing the exact plan. That's my main complaint with CF. I never know when the next major infection is going to be... I don't know when or if I'll get a transplant... and it bothers me. I'm fine with what the results are going to be, but I just want to know....
On the health front, I've started my path down the road of dealing with my CFRD (CF-related diabetes). I've always known that I was at high risk for CFRD. The older us CF patients get, the more our risk goes up at developing diabetes. This is mainly because with the CF affecting the pancreas, it slowly slows down, and decreases it's production of insulin. I've ran some high blood sugars for years, but finally at my last fasting glucose test it was determined that while I do not fully have CFRD yet, I am glucose intolerant, meaning my body does not process blood sugar as quickly as needed.
I had my first appointment with the endocrine team at OHSU on Wednesday. Right now they are still formulating a plan of action. I'll be going back up to OHSU on Wednesday, where I'll be meeting with the diabetes educator. They will most likely have more diet changes for me besides cutting out Pepsi which I have been fairly successful at. I'll also be getting a meter, which I'll probably have to use intensely for 6 weeks. We'll be working on determining if I can control my CFRD through diet, if I need pills to stimulate insulin production, or if I need to go all the way to shots. I'm not looking forward to doing the monitoring, but I don't have a choice, so I'll have to accept it and move on. Something that I'm fairly used to at this point. I just hate not knowing the exact plan. That's my main complaint with CF. I never know when the next major infection is going to be... I don't know when or if I'll get a transplant... and it bothers me. I'm fine with what the results are going to be, but I just want to know....
Wednesday, January 30, 2008
Clinic
Today's clinics went exceptionally well... best clinic that I've had in years.
My weight was up about 5 lbs. I was 110 on the nose, been a long time since I've seen that number on their scales.
My lung function was the best it has been in 2 years.
My sinuses may or may not need surgery. We're going to try a course of steroids to cut down my inflammation and pain. If I need surgery, then I need it... I've been lucky to avoid it this long.
I have to set an appointment with the diabetes educator and start monitoring my sugars... joy of joy. Then a few weeks after that go to an endocrinologist (diabetes doctor). More trips to Portland for me!
The drive home was scary! Snowy most of the way, but it started sticking my last 30 miles or so home. People were driving crazy like, I couldn't see, and I REALLY NEEDED TO PEE. All of this made a very stressed Talana who took a nap as soon as she got home.
I'm very happy over how my clinics went :)
My weight was up about 5 lbs. I was 110 on the nose, been a long time since I've seen that number on their scales.
My lung function was the best it has been in 2 years.
My sinuses may or may not need surgery. We're going to try a course of steroids to cut down my inflammation and pain. If I need surgery, then I need it... I've been lucky to avoid it this long.
I have to set an appointment with the diabetes educator and start monitoring my sugars... joy of joy. Then a few weeks after that go to an endocrinologist (diabetes doctor). More trips to Portland for me!
The drive home was scary! Snowy most of the way, but it started sticking my last 30 miles or so home. People were driving crazy like, I couldn't see, and I REALLY NEEDED TO PEE. All of this made a very stressed Talana who took a nap as soon as she got home.
I'm very happy over how my clinics went :)
Friday, January 25, 2008
Starting High School - Feeding Tube
My History - Chapter 5
As the summer ended approaching my freshman year of high school, it became more and more obvious that I was incapable of gaining weight through diet alone. Despite eating around 3,000 calories a day, I was stuck at 4'7" and about 72 lbs. The decision was made that I needed a feeding tube. The type of feeding tube that I was to get, a G-tube, is placed in the stomach, then punches through the stomach wall and allows access on the outside. It looked very much like the plug that is on a blow up beach ball... leading me to joking that I was the world's most life-like blowup doll. I had the tube placed the last week of August 1996. The tube allowed me to eat all day, then hook myself up to calorie rich formula at night and have it run into my belly all night long.
A feeding tube is not unusual in CF. While I do not know the exact number of how many of us end up getting one, I do know that girls, especially those who are starting puberty, often need help to gain weight. I was one of those girls. Without the tube my health would have dramatically declined. Lung function, the ability to breathe, is directly related to weight.
The impact on my weight and well being was almost immediate. I rapidly gained weight and I stopped losing lung function, hanging out at 70% of what is normal for several years. While 70% offers some impairment, daily life was hardly a challenge. I handled the plug hanging out of my stomach with humor. Since my peers knew about my CF (a grace and a blessing of growing up in a small town) I rarely was teased, but I also was not brave enough to buy a bikini until I had the tube removed in the Summer of 2001, after I proved that I could maintain my weight on my own.
I am grateful for the health that my tube gave me. It changed me significantly on the outside. Although the site never healed properly, and I was often in pain if I rubbed it wrong, it was worth it. I may need another tube again. My weight has been hard to manage over the last two years or so. I don't know what I think about this now that I am married and bringing a feeding tube in affects both me and my husband. While we both are committed to doing everything to make me healthy, I am not sure if getting a tube will help that much this time. I am trying my hardest to gain weight on my own so that I don't need a tube and have had limited success. We will see where I am at when I go to clinic on Tuesday... prayers are needed.
As the summer ended approaching my freshman year of high school, it became more and more obvious that I was incapable of gaining weight through diet alone. Despite eating around 3,000 calories a day, I was stuck at 4'7" and about 72 lbs. The decision was made that I needed a feeding tube. The type of feeding tube that I was to get, a G-tube, is placed in the stomach, then punches through the stomach wall and allows access on the outside. It looked very much like the plug that is on a blow up beach ball... leading me to joking that I was the world's most life-like blowup doll. I had the tube placed the last week of August 1996. The tube allowed me to eat all day, then hook myself up to calorie rich formula at night and have it run into my belly all night long.
A feeding tube is not unusual in CF. While I do not know the exact number of how many of us end up getting one, I do know that girls, especially those who are starting puberty, often need help to gain weight. I was one of those girls. Without the tube my health would have dramatically declined. Lung function, the ability to breathe, is directly related to weight.
The impact on my weight and well being was almost immediate. I rapidly gained weight and I stopped losing lung function, hanging out at 70% of what is normal for several years. While 70% offers some impairment, daily life was hardly a challenge. I handled the plug hanging out of my stomach with humor. Since my peers knew about my CF (a grace and a blessing of growing up in a small town) I rarely was teased, but I also was not brave enough to buy a bikini until I had the tube removed in the Summer of 2001, after I proved that I could maintain my weight on my own.
I am grateful for the health that my tube gave me. It changed me significantly on the outside. Although the site never healed properly, and I was often in pain if I rubbed it wrong, it was worth it. I may need another tube again. My weight has been hard to manage over the last two years or so. I don't know what I think about this now that I am married and bringing a feeding tube in affects both me and my husband. While we both are committed to doing everything to make me healthy, I am not sure if getting a tube will help that much this time. I am trying my hardest to gain weight on my own so that I don't need a tube and have had limited success. We will see where I am at when I go to clinic on Tuesday... prayers are needed.
Saturday, January 19, 2008
Day One
So last night... I drank the last pepsi in the house.
So I'm quitting a several year addiction. As much as Pepsi was not good for my pancreas, for my teeth... they try to pack as many calories on to us CF kids as possible. Now I get to find them in other places.
I have a rip-roaring headache today. I know some if it is my sinuses acting up... another CF related issue. I'll be going for a consult with my sinus doctor and probably setting up surgery on the 30th. I also get to see the CF doctors on that day. Combining both days into one as it is a two hour drive up to Portland, the closest CF center.
Thanks for all the visitors. It excites me to watch the little dots appear on my map. I've always been fascinated by geography and places. I spend a lot of time looking at maps. Have since I was little, so watching the dots appear makes that side of me happy. It also gives me a feeling of support.
May post again later tonight... probably another chapter in my history.
Friday, January 18, 2008
The day the Pepsi died
Well....
I'm not "diabetic". My fasting blood sugar is normal. However my 2 hour level after the sugar drink is high... meaning I'm "glucose intolerant". One step away from diabetic. Basically my pancreas is lazy. It will process sugar, but I stay at a high level for awhile, putting a lot of strain on my body. So I get to cut out my love... Pepsi. I can switch to diet, but ooooo my Pepsi. While I don't have to switch to a full diabetic diet, I do have to be more careful. May start monitoring my sugars as well... the doctor team is going to talk that over. It probably has a lot to explain for why I have had such trouble gaining weight.
I'm just mad right now.
I'm not "diabetic". My fasting blood sugar is normal. However my 2 hour level after the sugar drink is high... meaning I'm "glucose intolerant". One step away from diabetic. Basically my pancreas is lazy. It will process sugar, but I stay at a high level for awhile, putting a lot of strain on my body. So I get to cut out my love... Pepsi. I can switch to diet, but ooooo my Pepsi. While I don't have to switch to a full diabetic diet, I do have to be more careful. May start monitoring my sugars as well... the doctor team is going to talk that over. It probably has a lot to explain for why I have had such trouble gaining weight.
I'm just mad right now.
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