We had lunch with my family today for a late Thanksgiving. We had a great time. We didn't get to stay long, because Casey has some projects to work on for tomorrow. Here are a few pics from today...
I am still feeling great, but am not getting a lot of sleep. My prednisone dose starts getting weaned down in a little over a week.. yay!! I think my Prograf (anti-rejection med) level is high. I had my blood drawn last week at the local hospital, and they have to send those labs off to another hospital, because they don't do Prograf levels at the local one. I should have those results tomorrow. One symptom of a high Prograf level is shakiness, and my hands can't stop shaking yesterday and today. My lung transplant doctors have always liked to keep my Prograf levels on the low side for a transplant recipient, because I am very susceptible to different kinds of bacteria/infection, so I am going to have to explain that to my kidney docs on Wednesday and have them consult one another on this. Since I received living-related transplants for both transplants, I am a little less likely to reject the organs than someone who received organs from a deceased, non-related donor, so it's not so imperative that my Prograf be up there with the rest of the post-transplant patients.
My staples are really getting red and irritated now. They are ready to come out. I'll get them out on Wednesday. I'm not sure if they will take my stent out on Wednesday or wait until the following week, but I can feel it moving sometimes. I'm assuming it's in my bladder or my ureter. They will have to catheterize me to remove it, but thankfully they just do that in the clinic. My blood pressure is hovering around the borderline mark, so I'm not sure if they will start me on a b.p. med on Wednesday or not. I was really hoping to avoid that, but will do whatever it takes to take care of this new kidney. My blood sugars are doing better since starting on Lantus, a long-acting insulin I take at night. I was on it years ago. I can probably come off of that and just use my other short-acting insulin after my prednisone is back down to 5 mg.
That's all for now. I hope all of you are having a great weekend.
Sunday, November 30, 2008
We had lunch with my family today for a late Thanksgiving. We had a great time. We didn't get to stay long, because Casey has some projects to work on for tomorrow. Here are a few pics from today...
Here are 7 more things you may (or may not) know about me to add to the "6 quirky things about me" and the other "7 things about me" posts that I have done...
1.) I lived on a farm for 4 years. We had cows, chickens, horses, dogs, and a pet goat. Although I love horses, and the experience was great, I am NOT a farm girl. I love living in the suburbs... with neighbors.
2.) I taught aerobics in high school and was very active. Despite my CF, I did pretty much anything I wanted activity-wise. Most of my high school friends didn't even know I had CF. I was also a cheerleader and the school mascot one year. That was fun!!!!!! I dressed up like an eagle and acted really crazy! Probably the best year in high school!!
3.) I am a procrastinator. I TRY to live by the "delayed gratification" rule, but still find myself putting off what I don't want to do until the end. I always did this in school too. I was the one staying up all night the night before a project was due. I seem to do my best work under pressure though. Casey gets a little bit of this from me, but is much better than I am at getting things done.
4.) I love to cook, but hate to bake. I don't like following recipes to a "t". I like adding my own spices and other ingredients. With baking, you have to follow the recipe almost exactly or it won't turn out right. My husband is the opposite. He absolutely loves to bake!! He is obsessive in nature, so the "following the recipe" thing appeals to him.
5.) I love black. I like wearing it, I like decorating with it, I like buying black things for gifts. I am not a depressed person in any way, but just find it appealing. I actually had someone ask me one time if I wore anything besides black. Since then, I have tried to incorporate some color into my wardrobe, but still go straight to the black clothes at the store. I also love black and white photos. Something about them catches my eye like I cannot explain.
6.) I am a night person! I can easily stay up until 4 am and sleep until 1 or 2 pm. Even when I worked 1st shift as a nurse, and had to get up at 5 am, I didn't turn into a morning person. Thankfully my husband works 2nd shift and doesn't get home until 12:30ish. He and my daughter are also night people. On the weekends, Casey loves to stay up late with us and sleep late in the morning. We all get energy around 9 or 10 at night.
7.) I do not like talking on the phone! I love texting, emailing, blogging, chatting online, or talking to you in person, but the phone annoys me. I am partially deaf which probably contributes to it, but I find that people do a lot of small talk on the phone and I'm not a big fan of that. Most of my friends know that an email will serve more purpose in getting in touch with me and conveying a message than a phone call. Thankfully, my daughter is a "texter" and we text all the time when she's at her dad's house. It's so easy and convenient and can be done in a restaurant or store without disturbing others.
Ok.. that's all the things I can think of now. We are getting ready to go pick up Casey and go to my sister's house for my family's Thanksgiving. I will try to remember to take my camera and get some pics of today. I know how much my blog readers love pics. It's my favorite part of other people's blogs too!!
Friday, November 28, 2008
My mania has taken over the past couple of days. Yes, this prednisone is making me totally manic. My mind won't slow down, I am talking too fast, I can't sleep at night. I never knew what people who suffer from Bipolar disorder go through when they have manic episodes.. I probably still don't.. but I do have a clue now. Even though I go down to 25 mg of prednisone on the 10th of December, I probably won't notice much difference until I get to about 15 mg which will be sometime in January.
On the plus side of that, I am on the treadmill everyday and just have tons of energy to get things done. I still cannot push, pull, or lift more than 5 lbs., but am not finding that too hard. Cooking and minor cleaning is easy. I am getting in much needed shape after a lot of muscle wasting over the past year. In about 3 weeks, I can start adding some pilates to my workout, so that will really help.
Casey went shopping today with her cousins. She was really excited. It worked out really good that I went the other night. I was able to avoid the crowds today, which I'm sure were just swarming with colds and other viruses. One of Casey's Christmas presents isn't available online until the middle of January, and the store at the mall isn't putting it on the shelves until Sunday night. Jason is off work on Monday, and he, Casey and I will go to the mall after I pick her up from school. She and Jason can just go do their thing while I do some shopping for her.
As far as Christmas lists go, I know what I'm getting most people. Jason is actually the hardest to shop for. I think men tend to be pickier than women about some things. Anything related to his PS3 though would probably be a hit.
Jason is at work, and I really need to get out of the house. I am not released to drive yet, and it's driving me crazy. We will go somewhere tomorrow.. maybe just run errands, and out to dinner, but at least it will get me out of the house. I am trying to avoid going out to eat too much, because I'm on a low sodium diet and it's very hard to eat low sodium when you are at a restaurant. Sunday, we are having a late lunch with my family to celebrate Thanksgiving since everyone was sick on Thanksgiving day. They are all feeling better!!
I'm off to do the treadmill. I'm really putting some miles on that thing. It's amazing how much more useful it is as a piece of exercise equipment as opposed to a place to hang clothes! :)
Here is what I did with my leftover turkey. It turned out great, but I did make a few changes that I think really added to it.. See them at the bottom.
This is from www.foodnetwork.com...
Turkey Soup with Egg Noodles and Vegetables
2 teaspoons olive or vegetable oil
2 leeks, cleaned and chopped
2 carrots, peeled and chopped
1 clove garlic, minced
1 stalk celery, chopped
3 to 4 cups leftover cooked turkey, shredded or cubed
2 to 3 bay leaves
2 teaspoons dried thyme
1/2 teaspoon salt
1/4 teaspoon ground black pepper
8 cups reduced-sodium chicken broth
6 ounces uncooked egg noodles
1 cup frozen green peas
2 tablespoons chopped fresh parsley leaves
Heat oil in a large stock pot or Dutch oven over medium heat. Add leeks, carrots, garlic, and celery and saute 4 minutes, until soft. Add turkey, bay leaves, thyme, salt, and black pepper and stir to mix well. Add chicken broth and bring mixture to a boil. Reduce heat to medium-low, partially cover and simmer 10 minutes.
Return mixture to a boil and add egg noodles. Cook 10 minutes, until egg noodles are just tender. Stir in peas and cook until peas are just heated through, about 1 minute.
Remove from heat, discard bay leaves and stir in parsley.
Now for my hints: Let this soup simmer for about 2 hours so that the flavors really get into the soup. The leeks really added to it. If you don't know how to cut up leeks, you chop about 1/2 inch off the white root/bottom part and about 6 inches of the green part, and then use the rest of it chopped up. The leeks are one reason I chose this recipe over others. When cooked, leeks give things a great flavor. I also added more celery, carrots and garlic than the recipe called for.
I used 10 cups of reduced-sodium chicken broth, because 8 made it too thick for me. I used fresh thyme instead of dried. I read where you might want to cut the amount of thyme in half if you use dried, because it can overpower the rest of the soup, but you can use 2 tsps. of chopped fresh thyme and it's great. Make sure you only use the thyme leaves and not the twig. I also added fresh cilantro to this recipe. It really enhanced the flavor. I didn't add it or the fresh thyme until the noodles were cooked though. I used medium egg noodles instead of the wide. The wide seem to soak up all the soup when I use them.
Thursday, November 27, 2008
Asked to write a composition entitled, "What I'm thankful for on Thanksgiving,"
little Timothy wrote, "I am thankful that I'm not a turkey."
That being said... I have SO much to be thankful for today and everyday! My relationship with God, my family, my friends, my church family, my home, my dog, food to eat, and my 3rd chance at life to be here for my daughter as she grows. The list goes on and on!! I am also thankful for adversities in my life that have brought me closer to God and my family. Without those, how could I ever truly appreciate what He has given me?
It's so important to focus on what we do have instead of what we don't. I hope all of you have a great day and can find many things to celebrate!!
Wednesday, November 26, 2008
For you girls who love scarves, I also bought this scarf for Casey's birthday. She wears it with everything. I also bought it at www.delias.com and ordered it online with www.retailmenot.com coupons...
Tuesday, November 25, 2008
We had a successful trip to the mall!! Now I can avoid Friday crowds!!
I am in need of some new skin care. I love my make-up by Sheercover, but am not fond of their skin care, so today I went in search of something new. Here is what I decided upon... let's just hope it works and brings back some youthfulness...
Here are a couple of things Casey bought at Delia's...
You can never have too many scarves..
These jeans fit Casey great...
Casey loves graphic tees, and these are the ones she decided upon tonight...
Casey loves the Beatles...
I have received my first ever blog award, and it comes from my Cyster (CF sister). Here it is...
Somer is an energetic, beautiful, always smiling, kind-hearted girl who just happens to have this dreaded disease called Cystic Fibrosis. She spends a lot of her time raising money for the Cystic Fibrosis Foundation and even sells these great necklaces to raise money for research. You can read about the necklaces and how to purchase one here.
Now, it is my turn to pass this blog award along to 5 deserving people. I am choosing to pass it along to 5 fellow amazing Cysters!!!
I hereby nominate:
Here are the rules girls....
1. Post the award on your blog
2. Link me for giving it to you
3. Link the originating post nominating you here
4. Pass the award on to 5 more deserving people
5. Post these rules for your recipients
Monday, November 24, 2008
We decided to cook our Thanksgiving dinner yesterday since Casey will be at her dad's on Thanksgiving day. We had my friend Angela and her family over. She only lives 15 minutes from me, but we haven't seen each other for a couple of months. It was great seeing them!
We had turkey, stuffing, gravy, potatoes, green bean casserole, deviled eggs, bread, cranberry sauce, hot apple cider with spices, pumpkin pie with homemade whipping cream and coffee. It was really good. Jason and I cooked all day, but it was definitely worth it. Our turkey recipe, stuffing and gravy recipes all turned out really good. It was the first Thanksgiving dinner that Jason and I have cooked together as a couple.
Jason is out getting Casey from school now, since I can't drive yet. Tomorrow, my friend and her daughter are picking Casey up from school and then coming to get me. We are going to the Christmas parade and then Casey's friend is spending the night. Wednesday, we are heading to the mall after I go to the local hospital for some blood work. I have to avoid the mall on Friday because of the crowds, and Casey won't be with me anyway, so we are going Wednesday instead with her friend Michele and her mother Carol.
Casey has a project to work on tonight... yes, another one. Then we will just hang out here at home since I can't drive yet. It's no fun waiting on others to drive you places, but it's a small sacrifice for a new kidney!
I slept until 3:00 today...haha. I did get up and get Casey ready for school, but I went back to bed. It was almost 4 am before I fell asleep last night. Again, I'm assuming that's the prednisone. I drink decaf coffee and decaf sodas (when I have them), so I know it isn't that.
My staples are starting to get very irritated. I remember this happening after my lung transplant. I will get them out a week from Wednesday. My incision is still hurting some, but its mostly itching, which is a sign of healing. I did find that I tired out easily yesterday in the kitchen, but am still feeling so much better than I thought I would at this point. I was just so weak prior to this transplant, and had a lot of muscle wasting that I think it's going to take some time to build all of that back up.
On another note.. my sister, her husband, my dad and my mom are all fighting this cold/virus going around. Yes, my mom did wind up getting it, but she says she doesn't feel so bad today, so she's hoping that it doesn't get worse. My sister and her husband went to work today. I think they rested all weekend. I won't be seeing any of them on Thanksgiving day because I can't take the chance of getting sick right now. We are going to spend it with Jason's parents and grandmother. When I get Casey back, we will get together for a late Thanksgiving dinner with my family.
That's all for now! I hope all of you have a wonderful Thanksgiving and can all find many things to be thankful for... I know I can!
Sunday, November 23, 2008
Well, YouTube was not very clear in their advertisements and announcements. There is not yet a third installment of Charlie The Unicorn. The website for FilmCow.com, the producers of Charlie, only has a 1 minute promo posted.
Here's the story, last night YouTube.com Live launched. It's YouTube, but in real-time. YouTube was exploiting Charlie's popularity among his fan-base to promote their new web-based service. So there is nothing new from Charlie. YouTube's announcement, I feel, was misleading.
However, here is the 1 minute 14 second short that YouTube put out before a live audience last night when they launched their live website. You'll get a chuckle, especially if you remember who Rick Astley is.
Saturday, November 22, 2008
Hey folks. I've been on pins and needles all week about the next Charlie the Unicorn. It would appear that there has been a misunderstanding on my part. Episode 3 is out, but YouTube is only showing it on YouTube Live at the moment. It might be a day or two before I can get my hands on it and post it here. YouTube Live just launched tonight, I think, and it's like watching live TV. They're doing a rebroadcast at the moment of some concert and it'll be a while before Charlie comes back around. Hopefully it will be more available tomorrow.
Now, to compensate for such a disappointment, I must drink myself into the deepest drunken stupor imaginable. The sadness and horror. I don't know how I'll make it through the night. :P
Anyhoo, we're all doing great here. I hope you are too. Check back tomorrow.
Jason will be posting the 3rd "Charlie the Unicorn" tonight. It's funny how the little things get him so excited. LOL.
Today is a slow day. Casey is working on a project, Jason is doing things around the house and I'm resting at the moment. My pain is much better today, so I see no ER visit in the near future. :)
Casey had a great time at her Twilight party. She got home around 11 this morning. She will have her book club meeting tonight, and then tomorrow, she, Jason and I are going to have Thanksgiving dinner here. Casey's cousins are coming in from Pennsylvania, so she will be at her dad's house with them on Thanksgiving. I can't have any of my family over tomorrow. My sister and her husband are both sick and now my dad is getting sick. I sure hope my mom doesn't get it. I know her body isn't as strong as it could be yet.
Friday, November 21, 2008
I am having some pain today that I haven't had. It's more than incision/surgical pain, so if it persists, I'll be calling the nurse this weekend. I did get out some today to run some errands and take Casey where she needed to go. My mother-in-law drove us around. I still have a lot of energy from the prednisone, but am also seeing more side effects. I definitely have the "moon face" now and am manic a lot of the times. It is hard to concentrate on a tv show or anything for a long period of time. I also had a hard time sleeping last night. I know that prednisone is helping me heal, and is helping my body accept this new organ, so I'm thankful for it. You just have to take the good with the bad. :)
We aren't going to Virginia tomorrow. I feel like I should spend the day with Jason and Casey. We three haven't had time together in awhile. Plus, my doctors don't want me in crowds right now, and there are going to be a lot of people at my grandparent's house. I will really miss seeing them, but also know that I need to stay well.
Casey is at her "Twilight" party tonight. She went to see the movie and has an after party. Jason and I will pick her up tomorrow morning. We will then spend the day together, and Casey has a book club meeting tomorrow night. Her social life is quite busy these days. haha.
I had dinner delivered to me last night and tonight. People from my church have been so generous to help out. I think we are set now for the weekend as far as meals go.
I hope all of you have a great weekend!!!
UPDATE: I talked with the nurse coordinator about my pain, and she seems to think that my stent may have moved and is irritating my bladder. She said that's not uncommon. I am supposed to increase my fluid intake, and will have to go to the local ER tomorrow for a urine culture to rule out infection if the pain gets worse. I'm so happy she didn't want me to come to the ER tonight. I would hate to go sit 4 hours in a waiting room and pick up the flu or something worse, and then this turn out to be just my stent moving around and nothing more.
Casey called and said the movie was awesome. She said of course it wasn't as good as the book, but would see it probably 100 times. haha.
Thursday, November 20, 2008
My mom had her follow-up appointment at Duke today. The doc's exact words were... "You have some kick-a** kidneys". haha! She said apparently several of the doctors had been discussing our case and came up with that conclusion. She is doing great and is released. She doesn't have to go back.
I got tons of sleep last night. I really needed it I think. I didn't slow down at all yesterday. I haven't had pain med in over 24 hours now. I guess the prednisone is keeping the inflammation down. My blood pressure is creeping up, so I'll have to keep an eye on it and maybe start on a med for it if it continues this trend. I have a prescription for it already. The nephrologist just told me to start it if it chronically stays up.
Brenda was here with me last night and drove Casey and me around. We have some errands to run today after we pick Casey up from school and then we will just chill at home. I think I'm trying to do way more than I should. The prednisone is giving me so much energy (and probably the fact that I have a functioning kidney now), that I have to make myself sit down. They do want me walking a lot, but I can't even vacuum or sweep for a month. (darn, no housework..haha) When you have felt so bad for so long and all of a sudden you have energy, you don't want people telling you to sit and take it easy... :).
Wednesday, November 19, 2008
I got to Duke about 7:45 this morning. My lab appointment and transplant nephrology appointment went pretty quick. I'm not used to that with Duke..haha.
The doctor was amazed at how well I'm doing. The only issue that we really had to address is my blood sugars. Because of the prednisone, the insulin I am taking isn't doing the trick, so they have added another long acting insulin to my nighttime regimine. They will start tapering my prednisone dose on December 10th. By 4 to 6 months, I'll be back down to 5 mg/day, so my facial edema, sleep issues and blood sugar issues will definitely get better.
My blood pressure is great, and I'm not on any b.p. meds now. My hemoglobin is coming up, and my kidney function labs are looking great. I have a ureteral stent that was placed during transplant. I will have to have it removed in about 3 weeks, but they just do it during my regular clinic visit. The stent is a thin hollow tube which is placed inside the ureter to keep it open and allow the connection to your bladder to heal after transplant.
I finish my IV meds today. It will be great getting rid of that. My doc did tell me this morning that I take more meds than any of his patients, but I don't mind the pills as much.
I weighed 103# today!! I can't believe it. My appetite is really good and I am actually enjoying food again. I think my new kidney weighs about 5 lbs though..hahaha. I did ask the nephrologist about my kidney "bulging" out. LOL. He did say that my mom's kidney is huge.. just like the surgeon had said. The good thing about that is that it has a lot of filtering ability because it's so large. It really is a blessing. He said I will notice it for probably 4 to 6 months and then it should settle in and be less noticeable.
I am waiting on the rheumatologist now. My appointment isn't until 2:30, but hopefully they will take me early. I am so ready to go home. He is going to address my fibromyalgia today. The prednisone has made it better, but once I taper back down, the pain will all come back, so we need to find a different med to take care of it. For a lot of fibro patients, it bothers them more in the winter, but for me, the spring and summer are the worst. I tend to think it's because of the air conditioning inside. I have been more of an "inside" girl b/c of health issues lately, and do better when the heat is on than when the air conditioning is. I kind of feel like this is a wasted appointment since I'm not currently having fibro pain, but it takes about 6 months to get in to see this doc, and I'll be hurting again before I can see him again.
That's it for now. I'll update about my rheumatology appt later today. I hope you all are doing well.
UPDATE: I am home now. The rheumatologist said that since I'm on so much prednisone now, and my pain tends to ease in the winter (unlike most people with fibro), that all he wants me to do now is get in a rehab program for exercise. I will start that next week. If I start having the amount of pain I had this past spring and summer, he is going to start me on an anti-depressant. They seem to work for some fibro patients. Also, I don't have to go back to see the kidney doc again for two weeks. I was supposed to go back next week, but since I'm doing so well and they can't remove my staples until the following week, he said to just wait.
When I got home, I had so many cards from people. I am so thankful for all of you. It really touched me. Some people from my church are bringing dinner tonight too, so I don't have to worry about cooking. *Yay*. It was great to see Mom and Casey. I think I held Casey for 5 full minutes. I feel like it's been a month since I've seen her. Here we are with Balin, who was also very happy to see me!
Tuesday, November 18, 2008
Jason left about 3:00 today. I'm really missing him. I have the most awesome husband in the world. He has done so much for me, and this past week, I don't think I could have gotten through it without him. He was stressed about leaving me. I think he needed to get home.. being away from home wears on you, but he also didn't want to leave me here. I know that our dog Balin will be so happy to see him. Jason is his favorite person!! I will be so happy to be home tomorrow to see Casey and to see Jason after he gets home from work.
My pastor and associate pastor called me today and prayed with me. I have such an awesome church family. They have been so good to me and my family.
For all you Twilight fans out there, I thought I'd post a pic of my vampire bite since the movie is coming out this Friday...hahaha! Just kidding.. it's where one of my arterial lines was, and it looks like I got bit by Edward... we can only dream, right. :)
I just saw where they are calling all die-hard Twilight fans "Twi-hards". I guess Casey and I can be considered one of those for sure. She is going to see the movie Friday night with her friends and then going to a Twilight after party. It's a big deal.. if you couldn't tell. LOL.
My dad arrived here in Durham around 11:30 this morning. Jason is out getting some things at the pharmacy for me, and then he'll be heading back home. I don't have any appointments today, so I think I'll just take it easy. My incision is really hurting today. I think it's the combination of the swelling going down and pulling on the staples and all of the activity I did yesterday. I just took a pain pill, so hopefully that will be kicking in soon. I haven't been taking that many, because they really affect my appetite. I'm only averaging about 2 a day, which I think is pretty good.
My transplant coordinator called today and said my labs from yesterday look awesome! My creatinine is 0.5, which is the lowest it's been since lung transplant. I never thought I would see that number again. Whoo hoo! My other labs look great too. I'm not sure why I was having decreased urine output yesterday, but my labs sure don't reflect anything wrong.
I did get some sleep last night with the help of one extra sleep medicine. The extra med is probably why I'm so tired today. I'll be sure to get plenty of rest today for a full day of doc appts tomorrow. I have to be there for labs at 8 am, and then I'll see the transplant surgeon. After lunch, I'll have to see the rheumatologist, and then dad and I will head home. I can't wait to see Casey. She called me last night really missing me. It's been a really long week because she hasn't been with me.
My mom will be coming to Durham on Thursday for her follow-up appointment. My dad will have to bring her back here then. He has a lot of driving to do in the next several days. Dad says she's still moving pretty slow, but won't let anyone wait on her. That's just mom.. always doing things for others. Her friend Brenda is in town helping out with my nephew and driving my mom where she needs to go. Brenda will be staying with me on Thursday after Jason leaves for work.
On Saturday, if I'm feeling up to it, we are going to be going to my grandparent's house in Virginia for an early Thanksgiving celebration. I have to make sure that no one is sick before I go. Since I am so immunosuppressed right now, I have to make sure I avoid anyone with viruses or bacterial infections.
Thanks so much for your continued prayers. I hear through the grapevine of so many of you checking my blog and praying for me. It mean so much to know I have all of your support.
Monday, November 17, 2008
To have so many wonderful friends and family... I honestly think I have the best parents ever on the face of the earth, and my husband and daughter.. well, let's just say I could never deserve what they give me. God is so good to me.
Jason and I went to the mall to do some shopping and then had dinner with some friends tonight. Amanda and I went to college together, and she and I both have 13 year old girls. I hated that Casey wasn't there tonight to visit with Tabitha, but we will be coming to Durham next Wednesday for another follow-up appointment, and they will get to see each other then. They email, but haven't seen each other in 3 years.
Here are a few pics from dinner. Jason and I are going to watch a movie, then I'll do my IV meds and hopefully get some sleep tonight. I didn't sleep at all last night, but did take a long nap today. This prednisone is really keeping me awake. I am also having a lot of incision pain today. I think the swelling is decreasing and pulling on the staples. I'll get those out in 2 weeks. Thanks so much for all the comments and prayers. I love you guys!
Sunday, November 16, 2008
Well, I actually fell asleep Saturday night back at the hotel at 6:30 am. I was up all night tossing and turning. I am going to attribute that to the 30 mg of prednisone they have me on per day. My body is used to only 5 mg/day since 6 months post-lung transplant (with the exception of 10 mg/day for a few months during that time). Not only does prednisone keep you awake, give you a “moon face” and make you hungry (which for me is a good thing), it also makes you very irritable. I think I can deal with all of them except the irritability. My family also has a hard time around me when I’m on this much pred. Talk about “roid rage”.. it is a very true statement. Thankfully, they will start weaning down my dose in about a month, and I again should be on 5 mg/day in about 4 months. If everyone can just put up with me until then, things will be good. J
There really is no comparison when it comes to this transplant as compared to my double lung. This is like a splinter in my foot compared to the first one. I would truthfully say that I would go through 10 kidney transplants again before ever having to go through the lung transplant again. Not only does the double lung transplant really traumatize your body, the recovery just takes so long. It also comes with many more complications than the kidney transplant does. The recovery is about 5 or more times as long, and the first time, I had to stay in Durham for 3 months post-op for rehab. I think one thing that made it so bad for me was the fundoplication (or stomach wrap) surgery I had to get 3 weeks after my lung transplant to stop me from having reflux. That was a really tough surgery and it just really set me back a few notches in recovery.
I know that Jason had posted earlier about them keeping me sedated and intubated longer than expected this time around. I was supposed to be off the ventilator completely by the time I got to ICU, but they had to keep me intubated and sedated for 24 hours. When I got my mom’s lobe of her lung, it was large for her size, which was the only reason I was able to get it in the first place. When an adult gets a living lobar transplant (where both lungs are removed and replaced with only 2 lobes from 2 different donors), the lobes have to be rather large so that the recipient’s oxygen requirements can be satisfied. They knew that my uncle’s lobes would be large enough because he is over 6” tall. My mom is 3” shorter than me, so they hadn’t even tested her. I was quickly running out of time, and so they decided they would go ahead and test her anyway, It was a blessing that her lungs were large for her body,
Well, this time around… it almost wasn’t a blessing. I have a very small frame and therefore, when they went in to insert the 3rd kidney they almost didn’t think it would fit. It was almost too large to use. They kept me sedated and intubated so that I would stay still and not move for 24 hours so that the kidney would have time to anchor itself in there properly. That’s the main reason why I was in ICU for so long. They are saying I could quite possibly always have a little “bulge” there where the new kidney is, because of it’s size and my small frame.
Well, our day really didn’t begin today until about 4:00pm b/c we slept in and had meds to do and got a semi shower. We then went to the bar/restaurant area here in the hotel which isn’t that good. I was really looking forward to a crabcake sandwich, but it greatly disappointed. I did my IV’s while we sat and ate, and chatted with my kidney transplant coordinator. She had to bring me some paperwork and instructions for this week. We then ran some errands, and came back to the hotel for some more yucky food.
Tomorrow, we have to be a Duke at 9 am for blood work and then we have the rest of the day to goof off between IV’s until we meet some friends tomorrow night at a local Asian restaurant which has quickly become our favorite Japanese, Thai, Chinese, Sushi rest. Downtown Durham has some really great restaurants. On Tuesday, I have a rheumatologist appointment to get my fibromyalgia checked out and hopefully start on a new med for that. My dad will be here Tuesday afternoon, and Jason will head home. He has to be back to work on Wednesday. I will have a clinic appointment Wed. morning with the transplant surgeon, more blood work, and then I should be able to go home. Talk about a short stay in Durham. How awesome is that.
God has blessed us with so much, and He continues to amaze me each day. I am so thankful for my mom for once again saving my life, for my awesome husband who is literally at my beck and call with no complaining in doing so, for my dad, who is always there for us and gives the best advice always, for my sis and her family who come running whenever I need them, for my sweet baby girl who couldn’t possibly comprehend how much I am missing her right now. I can’t wait to see her on Wednesday.
Thanks so much for all my family and friends for your phone calls, emails, comments, and especially your prayers. They mean so much!!
Below are some pics that I have taken throughout the week. Christy saw them on the computer and she wanted to share them.
This was taken Tuesday morning just before lunch. Again, this was in the ICU. Casey had to leave later that day. I saw the moment and had to capture it. It wasn't posed. Casey REALLY wanted to talk to her mother before she had to leave. Instead, Casey got a lot of incoherent babbling and some very clearly understood comments that no one should hear, especially a 13 year old! They were funny, but very embarrassing.
This is was on the third floor waiting room outside Momma Gail's room. Casey and I just got kicked out of the ICU due to visiting hours being over. Renee was getting ready to leave to go home, and Casey to go with her.
Saturday, November 15, 2008
The doctors came in this morning and took the line out of Christy's neck. Two hours later they announced that they're are giving us our walking papers. So we're pretty much out of here when her existing I.V.'s are done; which will be between 2:30 and 3:30.
Friday, November 14, 2008
Can someone tell me what a "Sport Bed" is? It doesn't look any different from other beds other than this sticker. I don't see a larger manifold anywhere, or racing springs, or improved suspension. It's a hospital bed. How "Sporty" can you be?
Christy just finished her second "outing" for the day. A little after 6 pm she walked one lap on the floor with the nurse. She completed another two laps about 30 minutes ago. We had to crack the whip both times to get her out of the bed, but she proved herself a real trooper. We are at one end of the hall in this shot. The floor is laid out in a triangle pattern. One lap is, of course, 3x this distance. When your side is in stitches and you've been under for almost four days, this is doing great!