Friday had me feeling a little beat up by CF. I can't begin to tell you how annoying it is to blow in the magic box and have scores that do not at all reflect the amount of work it takes to maintain some sort of lung function. I am about 10 days into my new run of IVs and the scores are virtually the same. So, what does that mean?
I don't know exactly. We have at least two weeks to go and then we will try again. So, my next adventure is counting calories and continuing my IV schedule while trying to lead a life which is a little more dull. That actually sounds good about now. We had some discussion as to what might help...grocery delivery, fewer distractions, my former administrative assistant, etc.
This was the first day for our new nanny which is super exciting for both me and my darling daughter. She loves her and was not at all phased by my leaving her for the U. For those of you who know her, this is a major accomplishment in our lives. My friend talked to me on my drive and reassured me that it would really be fine and she was five now so it was probably time to let someone else watch her. Our nanny is just helping us out a couple times a month but I am hoping it works out for all of us. I owe credit to my other friend who did all the interviews and sent her to me pre-approved.
I also managed to lose a pound along the way so my latest project is a recipe ring on my fridge to keep the calories coming...
Blessings,
Cindy
Friday, February 24, 2012
Friday, February 17, 2012
The Power of Friends
When God called my cousin's son home last week, the women took action. I called my friend and said, "Can you come?" She said, "When do you need me?" I said, "Right now." "Okay, I am on my way."
A few days later when my help was needed, I called another friend and said, "Can you come?" She said, "What time?" I said, "As soon as you can." "Okay, I am on the way."
By Friday, when I had things to do that didn't include Beauty and the Beast with my daughter and her friends, another friend said, "Can I come and pick her up?" When my daughter hesitated, she picked her up and offered her security and a fun afternoon.
On Friday night, I started to worry about bringing my daughter and some her cousins to the visitation and service. I called another friend and said, "Can you come tomorrow?" She said, "Sure, what time do you need me?"
I think it is a little too easy to be sad and blue. Then, God sends a few angels to handle things and you see the power of friends. My friends, both far and near, are really amazing. They call, they text, they send mail, and most of all, they worry.
When my daughter's birthday arrived this week, I was far from ready for her party or her princess friends to arrive. With the help of my sister, my mom (the Fairy Godmother), and a few friends, it was all handled.
On Monday, I went back to the U and saw another doctor. The test scores are just ugly. He wanted to know what I was doing this week. I said, "I am having a princess party."
So, after some discussion, about what to do with me, we decided to restart IVs and try a new antibiotic and restart one of the old ones. We would be doing one 24 hours a day except that I declined the double line so I only have one line. So, the schedule is one three times a day and one twice a day for a total of 8 hours for at least the next three weeks. I knew things must look tough when my nurse offered to hang around yesterday so I could take a quick shower. I really think there are angels among us.
Blessings,
Cindy
A few days later when my help was needed, I called another friend and said, "Can you come?" She said, "What time?" I said, "As soon as you can." "Okay, I am on the way."
By Friday, when I had things to do that didn't include Beauty and the Beast with my daughter and her friends, another friend said, "Can I come and pick her up?" When my daughter hesitated, she picked her up and offered her security and a fun afternoon.
On Friday night, I started to worry about bringing my daughter and some her cousins to the visitation and service. I called another friend and said, "Can you come tomorrow?" She said, "Sure, what time do you need me?"
I think it is a little too easy to be sad and blue. Then, God sends a few angels to handle things and you see the power of friends. My friends, both far and near, are really amazing. They call, they text, they send mail, and most of all, they worry.
When my daughter's birthday arrived this week, I was far from ready for her party or her princess friends to arrive. With the help of my sister, my mom (the Fairy Godmother), and a few friends, it was all handled.
On Monday, I went back to the U and saw another doctor. The test scores are just ugly. He wanted to know what I was doing this week. I said, "I am having a princess party."
So, after some discussion, about what to do with me, we decided to restart IVs and try a new antibiotic and restart one of the old ones. We would be doing one 24 hours a day except that I declined the double line so I only have one line. So, the schedule is one three times a day and one twice a day for a total of 8 hours for at least the next three weeks. I knew things must look tough when my nurse offered to hang around yesterday so I could take a quick shower. I really think there are angels among us.
Blessings,
Cindy
Thursday, February 9, 2012
Sad Days
At the diabetes doctor, I learned about a new study which further explains my probelm. She said the study shows that when your blood sugar is higher than 144, it helps the bacteria in your lungs grow. She basically described it as candy for the germs. So, we are going to do a lot more checking of blood sugars and take a look at the long acting insulin dose as well as add in some fast acting insulin before meals. It means a lot more finger pokes and insulin shots which is fine when your fingers toughen up.
On another note, the PFTs didn't turn out as well as I hoped. They were lower than last week but not quite as low as the time before that so we had a choice. The office paged my doctor and he said we could either start the new antibiotic and the count for at least three weeks or take a few days off the whole routine and check again next week. Since I am feeling pretty good, we decided to give it a few days. So, I did the last IV last night and am going to just maintain my line until we make a decision about next steps.
On the way home, my mom called with that sad news that my cousin's baby had passed away unexpectedly. He was just over three months old. So, some of the things planned for this week got shuffled so we can help out my cousin and his wife who live close to us. This is a great example of living close to your support system. A number of friends have agreed to help cook over the coming weeks so they have dinner. I think food and prayer are two of the best ways to help people when you just really don't know what else to do. I know Grant's family appreciates it very much.
Blessings,
Cindy
On another note, the PFTs didn't turn out as well as I hoped. They were lower than last week but not quite as low as the time before that so we had a choice. The office paged my doctor and he said we could either start the new antibiotic and the count for at least three weeks or take a few days off the whole routine and check again next week. Since I am feeling pretty good, we decided to give it a few days. So, I did the last IV last night and am going to just maintain my line until we make a decision about next steps.
On the way home, my mom called with that sad news that my cousin's baby had passed away unexpectedly. He was just over three months old. So, some of the things planned for this week got shuffled so we can help out my cousin and his wife who live close to us. This is a great example of living close to your support system. A number of friends have agreed to help cook over the coming weeks so they have dinner. I think food and prayer are two of the best ways to help people when you just really don't know what else to do. I know Grant's family appreciates it very much.
Blessings,
Cindy
Saturday, February 4, 2012
Share your Mom
A few weeks ago, my mom and my friend's mom got talking about how I wanted to reorganize my kitchen. I had a few other things going on but my mom gave my number to my friend's mom who has excellent organizational gifts. It is funny how my messy kitchen didn't bother me at all until I was home a lot more often and had to face it every day.
Last Sunday, my husband and daughter loaded up to go visit my mom and my daughter's kitty, Spot, who lives at the farm with Grandma. Apparently, Spot's friend, Macy, got married in the night but didn't invite Grandma. I asked my daughter who Macy married and she looked at me like it was so obvious and replied, "Scaredy Cat."
Then, my friend's mom arrived and the kitchen purge was under way. It is entertaining to me how I think it is fine to mix my office supplies with my extra serving dishes. Apparently, that isn't how you are supposed to do things. Well, my friend's mom has it looking so good that it is kind of hard to believe that it is the same kitchen.
I have been very fortunate to have a lot of good help lately. My mom fed my family lunch so they would be busy during our kitchen project. My friend reassured me today that I really could miss a volunteer commitment and it would work out fine. She also offered to help me with my upcoming princess party. Another friend showed up for lunch with a pumpkin roll. It is delicious and must be full of calories. I think that I was supposed to share it with my family but I have managed to eat most of it myself.
Yesterday, the U called to check in on me. It is never a good sign when they are calling you rather than the other way around. My culture came back with another antibiotic choice which is good from a germ perspective. It is not as exciting if you are hoping to be liberated of IVs as the count starts over when you make a change so we woulld be looking at three more weeks. In the end, we decided to go do PFTs next week after I visit the Diabetes doctor and made a decision based on the numbers.
On another fun note, I was all excited about having all the balls in the air on my last doctor visit. My doctor advised me that I should be working out five times a week for thirty minutes. I thought twenty minutes was great. I should also be mixing it up which is easy in the summer but more difficult in the winter and with a picc line. So, this week, the treadmills were full at my second gym. I took that as a sign to try the recumbent bike. It only took me five minutes to check if it was time to pick my daughter up yet. Apparently, I have more work to do.
Blessings,
Cindy
Last Sunday, my husband and daughter loaded up to go visit my mom and my daughter's kitty, Spot, who lives at the farm with Grandma. Apparently, Spot's friend, Macy, got married in the night but didn't invite Grandma. I asked my daughter who Macy married and she looked at me like it was so obvious and replied, "Scaredy Cat."
Then, my friend's mom arrived and the kitchen purge was under way. It is entertaining to me how I think it is fine to mix my office supplies with my extra serving dishes. Apparently, that isn't how you are supposed to do things. Well, my friend's mom has it looking so good that it is kind of hard to believe that it is the same kitchen.
I have been very fortunate to have a lot of good help lately. My mom fed my family lunch so they would be busy during our kitchen project. My friend reassured me today that I really could miss a volunteer commitment and it would work out fine. She also offered to help me with my upcoming princess party. Another friend showed up for lunch with a pumpkin roll. It is delicious and must be full of calories. I think that I was supposed to share it with my family but I have managed to eat most of it myself.
Yesterday, the U called to check in on me. It is never a good sign when they are calling you rather than the other way around. My culture came back with another antibiotic choice which is good from a germ perspective. It is not as exciting if you are hoping to be liberated of IVs as the count starts over when you make a change so we woulld be looking at three more weeks. In the end, we decided to go do PFTs next week after I visit the Diabetes doctor and made a decision based on the numbers.
On another fun note, I was all excited about having all the balls in the air on my last doctor visit. My doctor advised me that I should be working out five times a week for thirty minutes. I thought twenty minutes was great. I should also be mixing it up which is easy in the summer but more difficult in the winter and with a picc line. So, this week, the treadmills were full at my second gym. I took that as a sign to try the recumbent bike. It only took me five minutes to check if it was time to pick my daughter up yet. Apparently, I have more work to do.
Blessings,
Cindy
Wednesday, February 1, 2012
Breaking News
As a kid, I grew up on a farm next door to my grandparents. My Grandpa was fond of listening to Paul Harvey tell "the rest of the story" while he waited for lunch. Well, this is the rest of the story tied in with a little breaking news.
Days before my 35th birthday, I went for a second opinion about my current lung infection. I was 7 weeks into a rough run of IVs after a nasty blood clot and my doctor thought his colleague might have some ideas. When I was working at the U, news broke of a new drug, VX-770, that could cure the underlying problem of CF for a small set of patients. Most people, like me, have the Delta 508 version of the gene mutation which needs another drug in development, VX-809. The point is that upon hearing about VX-770 for the first time, I believed that there really might be a magic cure waiting in the wings. Well, my 2nd opinion led me down a road that I was not prepared for at all. It was suggested that I should start to think about a lung transplant since the drugs, if approved, would likely help people with much less lung damage than me. I wasn't too worried about it and thought maybe he was just overprotective but agreed to another meeting to learn more about my options.
So, another week passed and I went to see my doctor who I fully expected to tell me that I didn't really need to worry about a transplant, at least not right now. When he agreed, well, I just cried. I couldn't really ask any questions or formulate any actual thoughts. My friends at the U tried to tell me that my reaction was typical. I tried to just bite my lip and get through Thanksgiving and my husband's 40th birthday. I didn't get a lot of sleep in December but did manage to schedule a meeting with the transplant doctor that my husband and I could both attend. As it turned out, it was two days before Christmas.
I eventually told three of my friends via email who see me on a day to day basis because I was not managing so well and it was a little obvious. Another friend caught on and little by little, other people figured it out. I wasn't really able to talk about it in person so I didn't really "tell" anyone. I still won't talk about it if my daughter's ears are listening. I also didn't want anyone else's opinion to influence my decision.
In the end, we decided to go ahead and do all of the tests required for a transplant as a back up plan so to speak. I will likely have a transplant at some point but I am in no hurry. The tests typically take a full week so it is better to do them when you are feeling good and can qualify than wait until you are really sick.
My doctor thought it was best for me to spread out all the tests so I wouldn't end up on IVs when it was all done. So, after lots of visits to the U in February and March last year, I was officially done. Then, the transplant team gets together and presents you and all your test scores. You get assigned a score out of 100 points which determines what number you are on the transplant list for your blood type. I got approved and had the option to go active although I would be lower on the list at this point. I choose to hold off for now and try to maintain as much lung function as possible for as long as possible.
My friend just celebrated her two year transplant anniversary and she gave me some good advice on the whole matter. She also knows me well enough and vice versa that I can ask her anything that I want and she will give it to me straight. A number of people have wondered out loud why I don't just go ahead and do it now. Well, there are a number of reasons besides the three month recovery period. Also, if you ever sit in a meeting with the surgeon explaining what they will do, you will find you have no desire to be in any rush. Of course, you also don't want to wait too long so it is complicated.
In today's paper, the headline reads, "FDA OKs a Vertex drug to treat cystic fibrosis." Can I just say that is totally amazing? It is for VX-770 and will help about 4% of patients with cystic fibrosis but puts the other drugs that much closer in the pipeline. So, today, I am asking everyone to make a donation in whatever amount you can afford to the Cystic Fibrosis Foundation. They had the vision for this day and the work isn't done just yet. I promise to host the party when the work is done.
Blessings,
Cindy
Days before my 35th birthday, I went for a second opinion about my current lung infection. I was 7 weeks into a rough run of IVs after a nasty blood clot and my doctor thought his colleague might have some ideas. When I was working at the U, news broke of a new drug, VX-770, that could cure the underlying problem of CF for a small set of patients. Most people, like me, have the Delta 508 version of the gene mutation which needs another drug in development, VX-809. The point is that upon hearing about VX-770 for the first time, I believed that there really might be a magic cure waiting in the wings. Well, my 2nd opinion led me down a road that I was not prepared for at all. It was suggested that I should start to think about a lung transplant since the drugs, if approved, would likely help people with much less lung damage than me. I wasn't too worried about it and thought maybe he was just overprotective but agreed to another meeting to learn more about my options.
So, another week passed and I went to see my doctor who I fully expected to tell me that I didn't really need to worry about a transplant, at least not right now. When he agreed, well, I just cried. I couldn't really ask any questions or formulate any actual thoughts. My friends at the U tried to tell me that my reaction was typical. I tried to just bite my lip and get through Thanksgiving and my husband's 40th birthday. I didn't get a lot of sleep in December but did manage to schedule a meeting with the transplant doctor that my husband and I could both attend. As it turned out, it was two days before Christmas.
I eventually told three of my friends via email who see me on a day to day basis because I was not managing so well and it was a little obvious. Another friend caught on and little by little, other people figured it out. I wasn't really able to talk about it in person so I didn't really "tell" anyone. I still won't talk about it if my daughter's ears are listening. I also didn't want anyone else's opinion to influence my decision.
In the end, we decided to go ahead and do all of the tests required for a transplant as a back up plan so to speak. I will likely have a transplant at some point but I am in no hurry. The tests typically take a full week so it is better to do them when you are feeling good and can qualify than wait until you are really sick.
My doctor thought it was best for me to spread out all the tests so I wouldn't end up on IVs when it was all done. So, after lots of visits to the U in February and March last year, I was officially done. Then, the transplant team gets together and presents you and all your test scores. You get assigned a score out of 100 points which determines what number you are on the transplant list for your blood type. I got approved and had the option to go active although I would be lower on the list at this point. I choose to hold off for now and try to maintain as much lung function as possible for as long as possible.
My friend just celebrated her two year transplant anniversary and she gave me some good advice on the whole matter. She also knows me well enough and vice versa that I can ask her anything that I want and she will give it to me straight. A number of people have wondered out loud why I don't just go ahead and do it now. Well, there are a number of reasons besides the three month recovery period. Also, if you ever sit in a meeting with the surgeon explaining what they will do, you will find you have no desire to be in any rush. Of course, you also don't want to wait too long so it is complicated.
In today's paper, the headline reads, "FDA OKs a Vertex drug to treat cystic fibrosis." Can I just say that is totally amazing? It is for VX-770 and will help about 4% of patients with cystic fibrosis but puts the other drugs that much closer in the pipeline. So, today, I am asking everyone to make a donation in whatever amount you can afford to the Cystic Fibrosis Foundation. They had the vision for this day and the work isn't done just yet. I promise to host the party when the work is done.
Blessings,
Cindy
Friday, January 27, 2012
Doctor Day
Well, we made it through Kindergarten round up with no tears. I am really quite proud of this fact. Now, we are on to our next adventure of the week to celebrate Chinese New Year tomorrow. My daughter has her first speaking role on stage so it should be very interesting.
My mom asked me earlier this week if I had been to the doctor this week. I confirmed that I had not and had not last week either. I didn't offer up that I was going there today as it only adds to my anxiety about the whole situation. People are really good about asking me to call them after the doctor but the truth is that I just want to go home and strap my vest back on. When it is a bad day, the last thing I want to do is repeat all the details. The call to my husband is enough for me. On the rare day that we have good news, I like to just relish in it for a little while.
My friend who has taken over watching my daughter since my other two friends moved is living the good life in FL today. She realized that she would be out of town and arranged for our other friend to cover for her. Before I knew about it, they had all the details worked out and I had a day at the U on my own which is a little easier for me. I have been having some sinus problems this week so we took the day off from school on Wednesday and laid low. My nurse told me yesterday not to get my hopes up which didn't seem like a really good sign.
Well, the good news of the day is that the graph is back at the numbers when I got out of the big house but still has to keep going up. So, we have two more weeks of IVs. We are going to decrease the Tobi a little since my blood tests are coming back a little high and my kidneys are getting a little tired of it. My last culture showed three kinds of pseudomonas and two of them should be handled by the combo of IVs that I am using now. The third one is resistant so we just have to will it away.
The bad news of the day is that I lost three pounds in the past two weeks for no apparent reason. So, we are back to the food diary and the eat all the time plan. I am also going to learn to use my bullet and add morning shakes to the routine. I think that is the only way possible to get in the number of calories that I need to get my weight to cooperate. I also met with my dietician today who found that both my vitamin A and D levels are low despite high doses of vitamins. So, we are going to add some more vitamins and reinstate my inhaler that was put on hold at the big house. My potassium level is still on the low side but getting better so we will continue with the ugly potassium pills.
By the end of my visit, I was ready to go home. I had to get some blood drawn for my research study. (I really think they keep it in a vault in the basement or something.) I went by the cafeteria to grab some lunch and ran into an old colleauge. I have been around the U for most of my 36 years so it isn't uncommon to run into someone that I know. I just prefer not to run into them with my IV connected and carrying around various medical deliveries.
So, today, I am thankful for the very busy valet that brought me my car so I didn't have to go out in the sleet. I am also thankful to my sister who helped me find the way to my daughter's play date when I made a wrong turn and was very lost. I am especially grateful to my fabulous friends who are so helpful and make a long day go a lot smoother for me. Please feel free to send your favorite recipes as we have a fun new project underway...more to come.
Blessings,
Cindy
My mom asked me earlier this week if I had been to the doctor this week. I confirmed that I had not and had not last week either. I didn't offer up that I was going there today as it only adds to my anxiety about the whole situation. People are really good about asking me to call them after the doctor but the truth is that I just want to go home and strap my vest back on. When it is a bad day, the last thing I want to do is repeat all the details. The call to my husband is enough for me. On the rare day that we have good news, I like to just relish in it for a little while.
My friend who has taken over watching my daughter since my other two friends moved is living the good life in FL today. She realized that she would be out of town and arranged for our other friend to cover for her. Before I knew about it, they had all the details worked out and I had a day at the U on my own which is a little easier for me. I have been having some sinus problems this week so we took the day off from school on Wednesday and laid low. My nurse told me yesterday not to get my hopes up which didn't seem like a really good sign.
Well, the good news of the day is that the graph is back at the numbers when I got out of the big house but still has to keep going up. So, we have two more weeks of IVs. We are going to decrease the Tobi a little since my blood tests are coming back a little high and my kidneys are getting a little tired of it. My last culture showed three kinds of pseudomonas and two of them should be handled by the combo of IVs that I am using now. The third one is resistant so we just have to will it away.
The bad news of the day is that I lost three pounds in the past two weeks for no apparent reason. So, we are back to the food diary and the eat all the time plan. I am also going to learn to use my bullet and add morning shakes to the routine. I think that is the only way possible to get in the number of calories that I need to get my weight to cooperate. I also met with my dietician today who found that both my vitamin A and D levels are low despite high doses of vitamins. So, we are going to add some more vitamins and reinstate my inhaler that was put on hold at the big house. My potassium level is still on the low side but getting better so we will continue with the ugly potassium pills.
By the end of my visit, I was ready to go home. I had to get some blood drawn for my research study. (I really think they keep it in a vault in the basement or something.) I went by the cafeteria to grab some lunch and ran into an old colleauge. I have been around the U for most of my 36 years so it isn't uncommon to run into someone that I know. I just prefer not to run into them with my IV connected and carrying around various medical deliveries.
So, today, I am thankful for the very busy valet that brought me my car so I didn't have to go out in the sleet. I am also thankful to my sister who helped me find the way to my daughter's play date when I made a wrong turn and was very lost. I am especially grateful to my fabulous friends who are so helpful and make a long day go a lot smoother for me. Please feel free to send your favorite recipes as we have a fun new project underway...more to come.
Blessings,
Cindy
Wednesday, January 25, 2012
Care Packages
One of my favorite parts about college was getting care packages in the mail. Of course, I really made it clear to everyone that I liked to get mail. I have gotten a lot of fun things in the mail, for example, a homemade cake, a foot stool, carmel popcorn, and the list goes on. Well, at the end of last week, a package arrived from Kohl's. I am not much of an online shopper so I was curious about it. My friend had a bunch of coloring books and a stamp set sent to us. It was a really fun idea and my daughter thought it was great!
So, the next day, my husband comes in with another package. He wanted to know what I had ordered this time. (Disclaimer: I am partial to ordering books online.) Again, I claimed innocence. My same friend had another package sent with this really great poncho sweater with an attached scarf. Can I just say that it is darling? I wore it on both my mystery date and my advenure with friends to see a Chinese dance show. I like to plan mystery dates which usually include tickets to some cultural event that my husband would never agree to on his own accord. This time, it worked out really well for us except our daughter fell asleep during the second half of the concert. I am still hearing about our mystery date to the ballet years ago. I have to admit he was right on that one.
It doesn't take a lot to send a care package. It can be anything really. I have two packages sitting on my desk waiting for a trip to the post office. I just think it is fun to send mail and fun to get mail. I can't recall if I mentioned my friend's package of gingerbread cookies. They came from Seattle with a note that simply read, "Some calories for you!"
Tomorrow, we are heading to kindergarten round up so you might avoid calling me. I didn't handle preschool so well and I imagine this will be worse. Feel free to pray for us.
Blessings,
Cindy
So, the next day, my husband comes in with another package. He wanted to know what I had ordered this time. (Disclaimer: I am partial to ordering books online.) Again, I claimed innocence. My same friend had another package sent with this really great poncho sweater with an attached scarf. Can I just say that it is darling? I wore it on both my mystery date and my advenure with friends to see a Chinese dance show. I like to plan mystery dates which usually include tickets to some cultural event that my husband would never agree to on his own accord. This time, it worked out really well for us except our daughter fell asleep during the second half of the concert. I am still hearing about our mystery date to the ballet years ago. I have to admit he was right on that one.
It doesn't take a lot to send a care package. It can be anything really. I have two packages sitting on my desk waiting for a trip to the post office. I just think it is fun to send mail and fun to get mail. I can't recall if I mentioned my friend's package of gingerbread cookies. They came from Seattle with a note that simply read, "Some calories for you!"
Tomorrow, we are heading to kindergarten round up so you might avoid calling me. I didn't handle preschool so well and I imagine this will be worse. Feel free to pray for us.
Blessings,
Cindy
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