I got home yesterday afternoon. On my way home I and got some fresh fruit so I could make a fruit salad when I got home. It hit the spot.
As hard as it was to motivate myself, I got on the treadmill for 27 minutes yesterday. Of course today was even harder because it is the weekend and I am home alone. But I did it! Today, I did 31 minutes. I can already feel my muscles returning. After the treadmill today, my lungs felt great. I think I got some junk out of the left lung. Breathing is smooth and easy right now. I wish this feeling would last.
The one thing I need to focus on when I exercise daily is calorie intake. I loose weight very easily. So as I type this I am eating almond. Nuts are a great source of healthy calories.
Brian is up working on the camp so I am here alone for the weekend. I had to stay home for my Chest PT visits. Plus he is ripping apart the walls and I don't need to be breathing that in. I am thinking of going to my sister's for pasta. This will get me out of the house and I will not need to cook.
Tomorrow, i am debating going to my nephew's 2nd birthday party. I can ride with my sister so I won't need to drive. I hate driving. I just need to see if I can work my Chest PT around going.
Well, things are looking up. Let's hope it keeps getting better.
Saturday, May 30, 2009
Wednesday, May 27, 2009
Good Test
Some times it take a test to let you know you are really feeling better. I just did a breathing test where they test the FEV1 (amount you blow out in first second) and the FEV (full capacity of lungs). I did the best I have in several years. Wow! My highest FEV1 was 44% OR 1.26 LITERS. The FEV was about the same as always. Every test I did, my numbers got better. Normally, my numbers get worse as I go.
Last week, my FEV1s was 35% (1st try), 31%(2nd try) and 32%(3rd try).
Today, In order of tries, 41%, 40%, 41%, 44%, 44%. Yeah!
What does this mean? It means, I had a bunch of junk and inflammation in my lungs and what ever we have been doing in the past week...is working.
I bet I will be out of here tomorrow.
Last week, my FEV1s was 35% (1st try), 31%(2nd try) and 32%(3rd try).
Today, In order of tries, 41%, 40%, 41%, 44%, 44%. Yeah!
What does this mean? It means, I had a bunch of junk and inflammation in my lungs and what ever we have been doing in the past week...is working.
I bet I will be out of here tomorrow.
Tuesday, May 26, 2009
Life in lock down
A lot of people ask what they are doing for me while I am here. The first day or two, they take a bunch of tests to see what is causing the fevers and try to start me on the right IV antibiotics based on my last sputum culture. Then they wait to see if a new culture shows anything. While we wait, I have Chest PT twice a day until I do my 6 minute walk test. This is the test they use to get the perimeters for me to use the treadmill. It also measures how far I can walk in 6 minutes. I went 1754 feet. I have done better but this is still really good with someone with my crappy lungs.
Today, I am still waiting for cultures to come back. I also get to go on the treadmill. This should make me cough up a bunch more crap. I haven't tried to walk the halls today to see how I do. I use 3 liters of oxygen when I exercise. Which helps keep my heart rate at normal levels. I get really short of breath when I cough because it causes inflammation.
Everyone seems to think my lungs sound a little better. My Doctor will be in tonight and will let me know what he thinks. My plan is to escape before the weekend and then do the rest of my treatment at home.
Well, that is it for now.
Today, I am still waiting for cultures to come back. I also get to go on the treadmill. This should make me cough up a bunch more crap. I haven't tried to walk the halls today to see how I do. I use 3 liters of oxygen when I exercise. Which helps keep my heart rate at normal levels. I get really short of breath when I cough because it causes inflammation.
Everyone seems to think my lungs sound a little better. My Doctor will be in tonight and will let me know what he thinks. My plan is to escape before the weekend and then do the rest of my treatment at home.
Well, that is it for now.
Sunday, May 24, 2009
Bored to tears
As most know, I am stuck in the hospital. I tried the home IVs for 3 weeks and apparently they didn't work. I was very short of breath and kept having fevers. I have been here for 4 nights so far. Does anyone else hate the hospital as much as I do?
My life is very uneventful right now which is the reason I haven't been blogging. I need to find something to kick start things in my life. Health wise summer is always my worst time of year. Yeah, I know that makes no sense.
Our camp is one big construction site so I have a hard time getting excited about going there. I was suppose to go there this weekend.
I am starting to feel a little bit better. I am not short of breath sitting here. The real test will be my 6 minute walk test tomorrow. I need to get off my duff and walk around the hospital or something. This hospital bed is becoming a permanent fixture. That can't be good.
Well, hopefully I will keep feeling better everyday and be able to go home soon. It would be nice to stay healthy for a while and be able to enjoy some of the summer.
My life is very uneventful right now which is the reason I haven't been blogging. I need to find something to kick start things in my life. Health wise summer is always my worst time of year. Yeah, I know that makes no sense.
Our camp is one big construction site so I have a hard time getting excited about going there. I was suppose to go there this weekend.
I am starting to feel a little bit better. I am not short of breath sitting here. The real test will be my 6 minute walk test tomorrow. I need to get off my duff and walk around the hospital or something. This hospital bed is becoming a permanent fixture. That can't be good.
Well, hopefully I will keep feeling better everyday and be able to go home soon. It would be nice to stay healthy for a while and be able to enjoy some of the summer.
Monday, March 16, 2009
Spring?
It was such a beautiful weekend. I wish I would of taken pictures to post because most people would of laughed it they saw what Brian and I did yesterday. It was around 50 out and we figured we should soak up some vitamin D so we sat in the driveway (the only place in our yard without snow) for 4 hours. We had a couple friends stop by to join us for a few hours. The guys hung out and drank some beer while I pigged out on candy! The sun felt so great! I made the mistake of staying in the sun too long and got rosy red cheeks. Oh the joys of sun sensitive medication.
The weather looks nice for the entire week so maybe I will get off my butt and go for a walk. Hopefully, we have seen the last snow storm of the winter! Now we get to look forward to mud season. Can any one tell me why I still live in Maine?
Funny thought of the week:
As I write this I am listening to the news. What do I hear? A wild turkey knocks a man of his motorcycle. Can you imagine?
The weather looks nice for the entire week so maybe I will get off my butt and go for a walk. Hopefully, we have seen the last snow storm of the winter! Now we get to look forward to mud season. Can any one tell me why I still live in Maine?
Funny thought of the week:
As I write this I am listening to the news. What do I hear? A wild turkey knocks a man of his motorcycle. Can you imagine?
Wednesday, March 11, 2009
Appointment
I had a great appointment at my transplant clinic. First, I stepped on the scale this morning and I weighed 116! When I stepped on the scale at the clinic same result. My oxygen was 93 at fist and then quickly went to 98 at room air. Of course my heart rate was so high it would scare most people but not me 135...that's what I get walking 50 feet without oxygen on. Off to do lung my lung function test. My FEV1s was 1.24...41% of my predicted. Yeah!!!
Okay now for the bad news. I found out the never listed me....what??? I guess they didn't think I wanted to be listed. Once I got everything straightened out they decided they are going to list me but not make me active...hello that is what I though we did in November. Good thing my health improved instead of worsened. I would have been really pissed!
After my clinic appointment, I needed to go to see the infectious disease folks. They told me I was the healthiest looking CF person they had ever seen. I was very happy about that. After we talked about all the funky stuff that my cultures have grown in the past they decided I can be treated with just the standard antibiotic treatment at the time of my transplant unless something changes between now and then. The day ended with a shot. Hepatitis A vaccine just in case I may want to visit any third world countries after my transplant. For some reason, i just found that funny.
Why this improvement all of sudden? I think it is the change of attitude I have had since my last CF appointment. I love my CF doctor but he said something that really puzzled me. He said "Steph, it is great that you have stabilized but look at all the work you are doing to stay where you are at." I took a long look at the changes I had made in the past few years and they are really nothing that I think has changed my quality of life. The biggest change was working from home. I actually love working from home. The only thing I miss is the social part of going to work. I miss all the people I work with. There was one thing that I wasn't happy with. I was not having any social life because I was afraid to catch something. So I decided I can't stop living just because my lung might crap out on me. I have been so much happier since I try to socialize a little more. I realized I could be afraid to live! I had never been that way before. I don't want to have any regrets. So I am going to live my life that way...I will just have an oxygen tank, a bottle of purell and a mask tagging along!
Okay now for the bad news. I found out the never listed me....what??? I guess they didn't think I wanted to be listed. Once I got everything straightened out they decided they are going to list me but not make me active...hello that is what I though we did in November. Good thing my health improved instead of worsened. I would have been really pissed!
After my clinic appointment, I needed to go to see the infectious disease folks. They told me I was the healthiest looking CF person they had ever seen. I was very happy about that. After we talked about all the funky stuff that my cultures have grown in the past they decided I can be treated with just the standard antibiotic treatment at the time of my transplant unless something changes between now and then. The day ended with a shot. Hepatitis A vaccine just in case I may want to visit any third world countries after my transplant. For some reason, i just found that funny.
Why this improvement all of sudden? I think it is the change of attitude I have had since my last CF appointment. I love my CF doctor but he said something that really puzzled me. He said "Steph, it is great that you have stabilized but look at all the work you are doing to stay where you are at." I took a long look at the changes I had made in the past few years and they are really nothing that I think has changed my quality of life. The biggest change was working from home. I actually love working from home. The only thing I miss is the social part of going to work. I miss all the people I work with. There was one thing that I wasn't happy with. I was not having any social life because I was afraid to catch something. So I decided I can't stop living just because my lung might crap out on me. I have been so much happier since I try to socialize a little more. I realized I could be afraid to live! I had never been that way before. I don't want to have any regrets. So I am going to live my life that way...I will just have an oxygen tank, a bottle of purell and a mask tagging along!
Yeah...I know
It has been a while since I blogged. Life just got really hectic. I figured I would do a quick update while I did my vest.
-Today, I go to Boston for a transplant appointment
-Last week, I spent in a court house supporting my sister, Melissa as she was fighting to change primary residency of her 2 daughters which was with their father. It was two very long days but well worth it since she won!!! She will have primary residency at the beginning on next school year.
-A few weeks ago, Brian and I spent the night in Portland for a romantic get away. Anyone who knows my husband knows that this is basically impossible since he is such a comedian. We spent the entire night laughing but had a fantastic time.
-I have made it through the winter with out having a major flare up...knocking on wood! I was down and out on Monday but woke up refreshed on Tuesday. I'll take that any day than 2 plus weeks on IVs.
-We have had a snow storm every Monday for the past 3 weeks. I cannot wait for spring.
-Life is treating me pretty good right now.
- New Breath 4 Steph did a fundraiser with Pampered Chef. It raised $162 plus more to come from the consultant.
I have definitely not been bored in the past month. I was actually MIA for a while. I will write more when I have time.
Here is a saying I just came across that I fell in love with : Life should not be measured by the amount of breaths you take but by the amount of moments that leaves you breathless.
-Today, I go to Boston for a transplant appointment
-Last week, I spent in a court house supporting my sister, Melissa as she was fighting to change primary residency of her 2 daughters which was with their father. It was two very long days but well worth it since she won!!! She will have primary residency at the beginning on next school year.
-A few weeks ago, Brian and I spent the night in Portland for a romantic get away. Anyone who knows my husband knows that this is basically impossible since he is such a comedian. We spent the entire night laughing but had a fantastic time.
-I have made it through the winter with out having a major flare up...knocking on wood! I was down and out on Monday but woke up refreshed on Tuesday. I'll take that any day than 2 plus weeks on IVs.
-We have had a snow storm every Monday for the past 3 weeks. I cannot wait for spring.
-Life is treating me pretty good right now.
- New Breath 4 Steph did a fundraiser with Pampered Chef. It raised $162 plus more to come from the consultant.
I have definitely not been bored in the past month. I was actually MIA for a while. I will write more when I have time.
Here is a saying I just came across that I fell in love with : Life should not be measured by the amount of breaths you take but by the amount of moments that leaves you breathless.
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