Thursday, April 22, 2010
Trying to catch up....
With everything that has been going on, I've neglected my blog. If you want to read about what's going on in a cronological order, you'll have to start reading with my oxygen post a little lower on the page and then work your way up. Of course, I've had technical difficulties while trying to post all of this....so it may take me a little bit longer to get some new posts up (or it could be that I'm really a blonde today and can't figure things out....) Anyway, sorry there are some long posts. My blog is currently my journal, and as much as I try to keep it short....well, it just doesn't seem to happen. I'll try to post more (with some pictures) soon! :o)
Feeding Tube
Over the last 5 yrs my weight has been slowly dropping. There are several factors that play into this. Obviously the big one is that I have CF, which means that I don’t absorb fat, vitamins and other nutrients very well. To help with this problem I take pancreatic enzymes to help digest my food to get the nutrients that I need. Because of this, people with CF often require 20-100% more calories than individuals without CF. The other major factor to my weight loss is lung infections. When I’m sick my body (just like everyone else) burns calories faster and more energy is burned with labored breathing, so I need extra calories to make up for this. That’s easier said than done….how many people feel like eating when they are sick, yet that is when it is most important to eat?! Add into that equation the antibiotics that I take. Most of them make food not taste good, messes with my heartburn, and (one of them) gives me horrible diarrhea…..which overall makes me not really want to eat. When I do get sick, I tend to drop 5 lbs really fast, maintain while on antibiotics, and then slowly start to regain after I’m off antibiotics and feeling better. When I have short period of time in between antibiotic therapy this really doesn’t help my weight gain. (as evident with the sick winter that I have had)
What have I been doing to gain weight? For a long time I have been forcing myself to eat, which is NOT easy when food doesn’t sound &/or taste good. For over a year I have also been taking an appetite stimulant pill in hopes that I would eat because I felt hungry. I have also been drinking some high calorie shakes (mostly Scandi-shakes that contain 600 calories per 8 oz). Even with all of my efforts, I have not been able to gain the needed weight. Before I got really sick, my weight was around 122 lbs (my highest weight in the last 8 yrs was 132 lbs), this year my lowest weight has been 110 lbs.
Anyway, after all that I have been through over the last several months, my lung function is still low Even after having a month to heal from my lung surgery and doing all I could at home to help, my PFTs are still around 30%. At this time Perry (my CF Dr.) suggested that we look into getting a feeding tube to help me gain weight. He reassured me that he knew that I was doing all that I could to gain the weight and he applauded my efforts to take care of myself. He then gave me the pros and cons of having a feeding tube and suggested that we do it soon, but he told me that it was my decision and that I needed to go home and discuss it with Curtis. So after some research, lots of prayer, and discussing this together with Curtis, we decided that I did need to get a feeding tube to help me gain the weight.
So, why a feeding tube? It’s a way to get an extra 1,000-2,000 calories while I sleep. It relives the pressure and worry to eat as much as I can during the day when I really don’t feel like it. Obviously I’m still going to eat during the day, but I don’t have to constantly force myself to eat. (I do still really like food!) Through research that I’ve done, I learned that the benefits of tube feeding include: fewer illnesses, stabilization of lung function, more energy, better mood, fewer fights over eating, increased appetite and less worry over weight. All good things in my book!!!! Some of the drawbacks to tube feeding include: having and healing from the procedure to put the tube into my stomach, doing “one more thing” to take care of myself, and of course there is always the insurance issue….not fun, but all do-able!
How do I feel about all of this? Pretty good actually! For a long time I said that I would do anything I could to keep from getting a feeding tube. However, after battling with my weight for a while, I did start to change my mind. Curtis and I read an article back in December about CF nutrition and feeding tubes. The article listed all of the benefits of feeding tubes that I mentioned earlier. I remember thinking at that time: “Maybe this is something that we should look into.” When Perry mentioned it a few months later I was already thinking about it and felt like the Lord had been preparing me for this. Once Curtis and I researched and prayed about it, I knew that we were making the right decision. My stress level has gone down because I know that I don’t have to constantly worry about food anymore. The one thing that was really hard for me to hear is that I won’t be able to be pregnant if I have a feeding tube (as I would be getting a gastric tube in my stomach and not the one that you put down your nose every night). I know that after a while that we could remove the g-tube and then maybe I could get pregnant….but I also know how much it’s going to help me when I’m sick and on antibiotics and need the extra calories. I have faith that we will be able to have kids someday, even if it is through adoption. I don’t know when it will happen, but I do know that we will be blessed to be parent’s one day. (until then I get to love my nephew’s and all of the babies and kids around me and give them back to their parents when I’m done…..I think it’s a good arrangement!)
As most of you already know, I did get my g-tube placed on April 6th. I’ll post about how things are going soon!!
What have I been doing to gain weight? For a long time I have been forcing myself to eat, which is NOT easy when food doesn’t sound &/or taste good. For over a year I have also been taking an appetite stimulant pill in hopes that I would eat because I felt hungry. I have also been drinking some high calorie shakes (mostly Scandi-shakes that contain 600 calories per 8 oz). Even with all of my efforts, I have not been able to gain the needed weight. Before I got really sick, my weight was around 122 lbs (my highest weight in the last 8 yrs was 132 lbs), this year my lowest weight has been 110 lbs.
Anyway, after all that I have been through over the last several months, my lung function is still low Even after having a month to heal from my lung surgery and doing all I could at home to help, my PFTs are still around 30%. At this time Perry (my CF Dr.) suggested that we look into getting a feeding tube to help me gain weight. He reassured me that he knew that I was doing all that I could to gain the weight and he applauded my efforts to take care of myself. He then gave me the pros and cons of having a feeding tube and suggested that we do it soon, but he told me that it was my decision and that I needed to go home and discuss it with Curtis. So after some research, lots of prayer, and discussing this together with Curtis, we decided that I did need to get a feeding tube to help me gain the weight.
So, why a feeding tube? It’s a way to get an extra 1,000-2,000 calories while I sleep. It relives the pressure and worry to eat as much as I can during the day when I really don’t feel like it. Obviously I’m still going to eat during the day, but I don’t have to constantly force myself to eat. (I do still really like food!) Through research that I’ve done, I learned that the benefits of tube feeding include: fewer illnesses, stabilization of lung function, more energy, better mood, fewer fights over eating, increased appetite and less worry over weight. All good things in my book!!!! Some of the drawbacks to tube feeding include: having and healing from the procedure to put the tube into my stomach, doing “one more thing” to take care of myself, and of course there is always the insurance issue….not fun, but all do-able!
How do I feel about all of this? Pretty good actually! For a long time I said that I would do anything I could to keep from getting a feeding tube. However, after battling with my weight for a while, I did start to change my mind. Curtis and I read an article back in December about CF nutrition and feeding tubes. The article listed all of the benefits of feeding tubes that I mentioned earlier. I remember thinking at that time: “Maybe this is something that we should look into.” When Perry mentioned it a few months later I was already thinking about it and felt like the Lord had been preparing me for this. Once Curtis and I researched and prayed about it, I knew that we were making the right decision. My stress level has gone down because I know that I don’t have to constantly worry about food anymore. The one thing that was really hard for me to hear is that I won’t be able to be pregnant if I have a feeding tube (as I would be getting a gastric tube in my stomach and not the one that you put down your nose every night). I know that after a while that we could remove the g-tube and then maybe I could get pregnant….but I also know how much it’s going to help me when I’m sick and on antibiotics and need the extra calories. I have faith that we will be able to have kids someday, even if it is through adoption. I don’t know when it will happen, but I do know that we will be blessed to be parent’s one day. (until then I get to love my nephew’s and all of the babies and kids around me and give them back to their parents when I’m done…..I think it’s a good arrangement!)
As most of you already know, I did get my g-tube placed on April 6th. I’ll post about how things are going soon!!
29th Birthday
I turned 29 this year….holy cow, I really don’t feel like I’m that old! Part of me still thinks of myself as being only 20, but on the days that I really don’t feel good, I feel much older than my 29 yrs. Anyway, after all that I have been through this year I was not really looking forward to my birthday. I was afraid to plan anything fun and exciting because there was a chance that those would change. Despite all of that, I had family and friends who were determined that I would have a good birthday anyway.
The festivities started off a week before my birthday when we had dinner with my family. Since I was in the hospital during my sister Sam’s birthday, we ended up celebrating her birthday with the family late….and since we had to reschedule (again because of my health) we decided that we would just celebrate our birthdays together. We had my whole family over, along with my Grandma and Grandpa Ward. It was fun to visit with my family and enjoy each other’s company.
The day before my birthday, my neighbor threw a party for me at her house and invited some other ladies in the ward. One of them cooked an Angel Food cake, and they lit candles and sang to me. I even had presents….lotions, a book, and lots of chocolate! It was so nice to get out of the house and to visit with some wonderful and dear friends. (pictures below...)
On my birthday I went to work for the last time to turn in all of my paperwork. I was sad to be leaving, but I know that it is the right thing to do. Since my birthday was on Wednesday and Curtis has scouts/mutual that night and I’ve been so sick, we didn’t plan anything. Curtis did surprise me with a dozen roses when he came home from work. They were beautiful!!! I then went to a YW program in Kuna, where my sister Brenda was getting recognized for earning her YW Recognition award. (It was really cute, they had interviewed all of the girls and asked them what their favorite project was and how that helped them to draw closer to Christ and the Temple. Brenda was so excited to talk about the blanket that “her sister Sara helped her learn how to make.” I’m glad that she really liked that project, it was fun to do with her.) After the mutual activities for the evening, we spend some time with Curtis’ family to celebrate my birthday by visiting and opening presents. Curtis and I celebrated my birthday on the weekend by going out to dinner at Johnny Carino’s. Even though I wasn’t excited about my birthday this year (like I am most years) it did end up turning out pretty good. :o)
I hope that 29 is a fun and healthy year!!!!
(on a side note: I did take my oxygen off to blow out my candles. When I feel better I do want to try and blow out 29 candles instead of just 2.)
The festivities started off a week before my birthday when we had dinner with my family. Since I was in the hospital during my sister Sam’s birthday, we ended up celebrating her birthday with the family late….and since we had to reschedule (again because of my health) we decided that we would just celebrate our birthdays together. We had my whole family over, along with my Grandma and Grandpa Ward. It was fun to visit with my family and enjoy each other’s company.
The day before my birthday, my neighbor threw a party for me at her house and invited some other ladies in the ward. One of them cooked an Angel Food cake, and they lit candles and sang to me. I even had presents….lotions, a book, and lots of chocolate! It was so nice to get out of the house and to visit with some wonderful and dear friends. (pictures below...)
On my birthday I went to work for the last time to turn in all of my paperwork. I was sad to be leaving, but I know that it is the right thing to do. Since my birthday was on Wednesday and Curtis has scouts/mutual that night and I’ve been so sick, we didn’t plan anything. Curtis did surprise me with a dozen roses when he came home from work. They were beautiful!!! I then went to a YW program in Kuna, where my sister Brenda was getting recognized for earning her YW Recognition award. (It was really cute, they had interviewed all of the girls and asked them what their favorite project was and how that helped them to draw closer to Christ and the Temple. Brenda was so excited to talk about the blanket that “her sister Sara helped her learn how to make.” I’m glad that she really liked that project, it was fun to do with her.) After the mutual activities for the evening, we spend some time with Curtis’ family to celebrate my birthday by visiting and opening presents. Curtis and I celebrated my birthday on the weekend by going out to dinner at Johnny Carino’s. Even though I wasn’t excited about my birthday this year (like I am most years) it did end up turning out pretty good. :o)
I hope that 29 is a fun and healthy year!!!!
(on a side note: I did take my oxygen off to blow out my candles. When I feel better I do want to try and blow out 29 candles instead of just 2.)
Oxygen
The first week after having my 4th lung surgery was hard. I was often in pain and even something as simple as walking to the bathroom would exhaust me. Since I had been through this surgery and recovery before, I was not too surprised by this. I didn’t have a problem taking it easy. We were also very blessed to have help from family and many sisters in our ward who helped to clean and who brought dinner to us.
A week after my surgery I was back at the doctor for a check-up. This time I was seeing my regular CF doctor (Perry Brown) who had been out of town when I was coughing up blood and had surgery. As expected my lung function was back down and my weight was still low. My oxygen was also low (barley 90% at rest), which made sense (given everything that I had just been through) but for some reason I was not expecting that. Perry was concerned with everything being low, but knew that it was expected, especially since this was my 4th bronchial embolization. Our big concern was my oxygen level…so he had me walk around the office for a few minutes and we monitored my oxygen saturation. It dropped as low as 84% and never went above 88% while I was walking (and it was a slow walk…nothing too strenuous). Hmmm, no wonder I was continually exhausted! With this information it was decided that I needed to go on full-time oxygen, at least temporarily. Perry reassured me that what I really needed was time for my body to heal. I need time to work on eating more and gaining the weight that I’ve lost over the last several months. ..time to be on oxygen full time to help my lungs to heal. Time…..
I left the office knowing that the logical thing was to go on oxygen full time, but emotionally I was very upset by it. I cried all the way home. I cried when I got home. One of my wonderful visiting teachers came over to my house and she let me cry to her and tell her all about how upset I was by this decision. I was frustrated because I didn’t want to deal with all of the looks and questions that I would get from people. Wearing oxygen is a constant visible reminder that I’m not doing well inside my body. It reminded me of all of my CF friends who have passed away and how they were on oxygen full time before they passed away. It was one more thing that I would have to deal with on top of an already full schedule of trying to take care of myself. I was upset because I didn’t go back to the doctor for 2 weeks and that meant that I was going to be on oxygen full time on my birthday. I always have known that at some point in my life I would be on oxygen full time, but that always seemed so far away and here it was right before my 29th birthday. I was frustrated that a few people that I had told about it told me to stop complaining and to be happy and to look at the bright side of things. I felt like no matter what I said they didn’t understand. My wonderful visiting teacher listened to me and validated all of my feelings. (she had breast cancer a few years ago and knew a little about what I’m going through emotionally) We talked about how it’s ok that I feel down and depressed about it. We talked about how when you have a chronic illness it’s hard to accept when you move up the ladder in the progression and severity of the disease. It was all ok that I was upset and that I needed to get all of the emotion out and not keep it bottled up inside. She also validated that I needed to be ok with it before I could deal with the “rest of the world” and the questions that I could get from people who just didn’t understand and/or wanted to help. What a blessing she was to me that day and such a wonderful tender mercy that the Lord had given to me!!! After our visit I felt much better and could see the silver lining in this “new adventure”.
So my new adventure is living with some “new accessories”, having a constant “tail”, and carrying a “pet” with me whenever I leave the house. The first week was hard for me, but I had constant love and support from everyone around me. I definitely haven’t let wearing oxygen slow me down. I carry it with me everywhere. Now it’s just a part of who I am. I’m not sure how long I’m going to have to wear it full time, but it doesn’t matter. It has helped me to feel better, so that is all that matters! (and the fact that I don’t have to be in the hospital just to wear it…definitely a huge plus!)
A week after my surgery I was back at the doctor for a check-up. This time I was seeing my regular CF doctor (Perry Brown) who had been out of town when I was coughing up blood and had surgery. As expected my lung function was back down and my weight was still low. My oxygen was also low (barley 90% at rest), which made sense (given everything that I had just been through) but for some reason I was not expecting that. Perry was concerned with everything being low, but knew that it was expected, especially since this was my 4th bronchial embolization. Our big concern was my oxygen level…so he had me walk around the office for a few minutes and we monitored my oxygen saturation. It dropped as low as 84% and never went above 88% while I was walking (and it was a slow walk…nothing too strenuous). Hmmm, no wonder I was continually exhausted! With this information it was decided that I needed to go on full-time oxygen, at least temporarily. Perry reassured me that what I really needed was time for my body to heal. I need time to work on eating more and gaining the weight that I’ve lost over the last several months. ..time to be on oxygen full time to help my lungs to heal. Time…..
I left the office knowing that the logical thing was to go on oxygen full time, but emotionally I was very upset by it. I cried all the way home. I cried when I got home. One of my wonderful visiting teachers came over to my house and she let me cry to her and tell her all about how upset I was by this decision. I was frustrated because I didn’t want to deal with all of the looks and questions that I would get from people. Wearing oxygen is a constant visible reminder that I’m not doing well inside my body. It reminded me of all of my CF friends who have passed away and how they were on oxygen full time before they passed away. It was one more thing that I would have to deal with on top of an already full schedule of trying to take care of myself. I was upset because I didn’t go back to the doctor for 2 weeks and that meant that I was going to be on oxygen full time on my birthday. I always have known that at some point in my life I would be on oxygen full time, but that always seemed so far away and here it was right before my 29th birthday. I was frustrated that a few people that I had told about it told me to stop complaining and to be happy and to look at the bright side of things. I felt like no matter what I said they didn’t understand. My wonderful visiting teacher listened to me and validated all of my feelings. (she had breast cancer a few years ago and knew a little about what I’m going through emotionally) We talked about how it’s ok that I feel down and depressed about it. We talked about how when you have a chronic illness it’s hard to accept when you move up the ladder in the progression and severity of the disease. It was all ok that I was upset and that I needed to get all of the emotion out and not keep it bottled up inside. She also validated that I needed to be ok with it before I could deal with the “rest of the world” and the questions that I could get from people who just didn’t understand and/or wanted to help. What a blessing she was to me that day and such a wonderful tender mercy that the Lord had given to me!!! After our visit I felt much better and could see the silver lining in this “new adventure”.
So my new adventure is living with some “new accessories”, having a constant “tail”, and carrying a “pet” with me whenever I leave the house. The first week was hard for me, but I had constant love and support from everyone around me. I definitely haven’t let wearing oxygen slow me down. I carry it with me everywhere. Now it’s just a part of who I am. I’m not sure how long I’m going to have to wear it full time, but it doesn’t matter. It has helped me to feel better, so that is all that matters! (and the fact that I don’t have to be in the hospital just to wear it…definitely a huge plus!)
Subscribe to:
Posts (Atom)
