Ups and downs and all arounds

Hi blogger world! Another lengthy break between posts. I thought I would give everyone an update on the happenings in our lives.

I'll start with my health and get that out of the way. :) Most of you know they found skin cancer on my toe of all places. Yeah, that's what you get for being immunosuppressed. To make a long story short.. thought I was going to have to have it surgically removed, and a skin graft done. Saw a surgeon at Duke yesterday and he seems to think "that would be like putting a campfire out with a fire truck". Hehe. He said it would do the job, but he thought that was way overdoing it. Squamous Cell Carcinoma or SCC can become invasive and in rare cases metastasize, but he doesn't seem to think that I have reason to worry about either of those. For right now, I'm just going to be using a chemotherapy-like cream on it called Aldara. I use it on my face also for some places I have there that look suspicious. I see my dermatologist pretty regularly at Duke, so she will keep a watchful eye on it.

I have been having some swelling for the past month or so. I saw my nephrologist yesterday, and he doesn't think it's my kidney causing it. He ran a few extra tests to make sure, but if I continue to have it, I will need to have some studies done on my heart and liver to rule them out as the cause.

Let's talk about hair loss.. ughh!!! So, you all know I lost most of my hair after my lung transplant, a lot of my hair after my kidney transplant, and that the rATG treatment I had for my chronic rejection back in March was beginning to thin it too. Well, these past 2 weeks have been awful as far as hair loss goes. I'm not so sure why I'm so prone to hair loss when I'm given meds to knock out my immune system. I have friends who have been given much stronger meds, and it didn't affect their hair in any way. I'm frustrated!!!! I really am. This is the 3rd time, and I know if I ever have to get another treatment for my chronic rejection again, it will happen a 4th. I am taking Biotin and using men's rogaine (per my dermatologist's suggestion), but so far, I'm not seeing any difference.

So on to more exciting things... Casey has had a very busy summer. She has been to the beach twice, to Sint Maarten, will be going to visit her cousins in Pennsylvania for a long weekend, and will go with my family to the mountains in several weeks. She is currently in the middle of her driver's ed classes. One week down after today, and one week to go. She gets her learner's permit in November.. YIKES!!!!

She wants to start tutoring this coming school year to raise money for her Spain trip that she is taking next spring. Her father and I have told her that we want her to raise $1000 for the trip, so she has already been saving her allowance. We'll see how that goes. LOL.

Jason is working a crazy shift now.. 11 am to 8 pm. It's really not so bad, because he gets up early and gets things done, and since we eat dinner late anyway, he is home for dinner. Of course it's not the ideal work schedule, but much better than the night shift. We aren't sure how long he will stay on this shift.

We FINALLY, yes FINALLY have our house up for sale. We've had one interested buyer, but haven't heard back again from her. We haven't really advertised yet other than sticking a for sale sign in the front yard, so I'll be getting on that this coming week. We are looking to move about 20 minutes from here, which will be closer to Jason's work, and closer to the school that Casey's current school will be moving to in 2011. Plus, it will get us out of city taxes which will be nice.

My birthday party is coming up as most of you know. We still have a lot of planning to do.. most of all... meeting with our caterer about the menu. I'm super excited about seeing all of my family, old friends, new friends, friends I've only known from the net, etc. What a great time it's going to be. I have to admit I'm a little anxious though, because of my hearing loss. I don't do well in social situations that are noisy because of that. Of course I'll have my hearing aid on, but I'll still struggle with it.

The rest of my family is doing well. My nephew goes to kindergarten this year.. just super unbelievable. The pups are good, and in general.. life is good. I hope it is for all of you as well. XOXO

Random photos:

Mish Mash

Hey everyone!!! Wow, it's been forever and a day since my last post. Sorry about that, especially to my Virginia friends. :)

Things have been going well since the rATG infusions. I have been in rehab with a physical therapist who is amazing!!! She has helped me build up my core, and strengthen my arms and legs. It was much-needed... trust me. I still have a ways to go, but we are well on our way to getting me back in great physical condition. Yay!

I had my first follow-up yesterday with my pulmonologist since the rATG. Of course, this included pulmonary function tests to see if the rATG helped improve my numbers. Unfortunately it didn't. :( That's the not-so-good news. The good news is that even though my numbers were down a few percentages, it was still in the "same range", so therefore, I'm not worse. What my doc thinks is that the scar tissue already in my small airways is "damage done". What my doc hopes is that the rATG has stabilized my chronic rejection, and will prevent me from scarring further. Remember, the scarring is due to my own white blood cells attacking the foreign lungs (lobes) in my body, and he hopes the rATG has stopped that. Basically, we won't know until my next appointment in 2 months. He hopes to see that I'm holding steady, or that my lung function has even improved a bit because of continued exercise. He did say that sometimes when someone starts chronic rejection, they start a downward trend and it continues pretty fast. He's not seeing that with me, so that is awesome!!!

I also saw my nephrologist yesterday (kidney doc), and he seemed pleased with most things. He ordered some extra tests to check on a few things he's concerned about, but nothing big. Basically, my kidney function is holding steady, so that's great news. :)

My nephew's 5th birthday is tomorrow. I just can't believe he is 5 now. We are going to Jason's parent's house for lunch, and then on to my sister's house for the birthday party later on. I asked my nephew what he wanted for his birthday, and he said "just a little teddy bear". Trust me, he doesn't need another teddy bear, but it was just so cute how he put it. Casey and I are going today to get him a gift, although I might have to pick up just a tiny teddy bear, just because he asked for it.

Casey has tons of plans for the summer!!! She is going to the beach with her two best friends, going to her cousin's house in Pennsylvania, going on vacation with her dad and step-mom, going on vacation with my family, and then possibly going to a camp with her friends. It's going to be a crazy-busy summer for her, but she's going to have a blast!

Very exciting news... Casey gets her braces off this coming Monday. I will have to post pictures of before and after! She can't wait. It will be just a couple of weeks shy of 12 months since she got them put on, but the orthodontist had said she wouldn't have to have them on a long time.

Jason is well, but not liking 1st shift as much as I like it! I love having him home for dinner, and getting in bed at a decent time. I'm hoping he will get used to it though. :) He's been doing some landscaping, and trying to perfect this house to get it ready to sell... yes, I know I have been talking about this for over a year now, but I think we are finally close. There is just so much competition right now, and very little buying going on, so I really want it to appeal to the buyer. Lots of things with my health have set us back, but I'm not planning on anything stopping us from getting it on the market this time.

I hope all of you are enjoying Spring, and enjoying the little things in life. I know I am! Love to all! XO

Birthday parties, Anniversaries and Bronchs

First of all a very Happy Veteran's Day to all of you who have served or are still serving in the Armed Forces. This includes my husband who served in the Marines for 4 years. :)

It was a great weekend celebrating Casey's birthday. I can't believe she is 14!! That means that one year from now she can get her learner's permit provided she takes driver's ed in the summer (which of course she can't wait to do). How scary is that??? Casey also got her report card on Friday, and made straight A's. I'm so proud of her for working so hard in her new and challenging school. It's been a rough 9 weeks, but her homework seems to have eased up a bit in the past few weeks thanks to the school's principal stepping in and asking the teachers to tame it down a bit. :)

Jason and I leave for Duke in the morning. I have a dermatology appointment and a lung transplant appointment tomorrow. We are going to stay the night, because I have a bronchoscopy on Friday. This bronch is to make sure that my acute rejection is gone. I am now back down to 5 mg of prednisone. The IV steroid and prednisone taper were not so bad. Of course I had to watch my blood sugars, but other than that, there weren't many side effects.

Yesterday was my one year kidney transplant anniversary. It's hard to believe it has been a year now. There have been very few bumps in the road regarding my new kidney. Praise God for that!

Tomorrow is my 8 year double lung transplant anniversary!!! If you would like to read about my lung transplant, you can go here.

A big humungous thank you to my mom and Uncle Joey. Without them, I would not be here now. For those of you new to my blog, my mom and uncle each donated a lobe of their lung to me, and my mom donated her kidney to me. They are my heroes and I love them both so much.

I'll leave you with a few pics from Casey's party and some pictures of her "new" room. I made the banner and decorated her bulletin board as a surprise for her last week...

I Acknowledge...

That...

I have not been doing a good job of keeping up with my blogger friends lately.

I am behind on my photography classes.

My floors need mopping.

Closed minded people make me hysterical sometimes.

I am only on page 64 of the book I'm reading for the online book club.

I went back to bed after taking Casey to school and slept until 2:20 this afternoon.

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News...

My friend Jeri, who had a double lung transplant and liver transplant last Thursday, is doing GREAT! She might be getting out of the hospital tomorrow!!! Is that unbelievable or what? I'm so happy for her. What a fighter she is.

My friend Clark, who has cancer and was told to call in hospice, is doing better. He is still in Mexico receiving treatment, and he is sitting up eating and feeling stronger. Yay!!! Definitely an answer to prayer! He still needs your thoughts and prayers though. He isn't out of the woods by any means, but it's just great to hear that he's feeling better and actually able to eat instead of having to rely on parenteral nutrition.

My kidney transplant appointment was very uneventful yesterday! That's a great thing. :) When the doc came in, I was eating chocolate because my sugar was low. For all of you diabetics, you know how sometimes you get a little delirious when your sugar gets low? Well, he must have thought I was a little off my rocker. I acted a little bit like I was drunk. Thankfully, Casey was in there to correct anything I said that was off. haha. I was fine after about 10 minutes. Anyway, my labs look great!!

I got to see 2 transplant friends yesterday. I had met one of the girls right before my transplant. She was about a year out of her transplant when I first met her, but was still on oxygen. She had a really rough time after her transplant, but she's been doing great ever since. She looked awesome yesterday, and we had a great lunch together. Then I got to see another friend, who I only knew online. She was speaking to healthcare workers at Duke about patient advocacy, so Mom, Casey and I went to hear her speak. What a great speaker she is... and so funny! I got to meet her briefly afterward. It's so much fun meeting online friends for the first time in person. I have NEVER been disappointed!

I hope all of you are having a great week! Casey went back to school today. Their spring break was cut short, because of make-up snow days. We did have a good week though!!

Casey just sent me this picture. She took it on her phone yesterday. It's of me and Dana, my friend I met for lunch yesterday...

Is it Wednesday already?

Time is flying. Where has the week gone? Tomorrow I'm headed back to Duke for an appointment with my favorite doctor... my lung transplant pulmonologist. He'll be looking at my Prograf level to make sure we are on track with the lower dose that I'm on, and also my kidney function. Of course, he will also be looking at my pulmonary function tests like always. My numbers were down a little bit last time, so we are hoping they are back up.

I think I'm over-diuresing (if that's even a word). I've been on a diuretic since about a month post-kidney-transplant. I was getting swelling around my ankles and in my fingers, so they started me on that. It's very common for someone who's just had a kidney tx to be on a diuretic. The past few days, I've been very dizzy when I stand up, my skin is starting to dry out, and my weight is down below 100 again. I know that part of that could be my decreased appetite because of the nausea, but I'm also thinking that I'm dehydrating myself. We'll discuss that as well tomorrow. My blood pressure was the lowest it has been in months last night, which of course could be a sign of dehydration, and thus, the cause of my dizziness.

Please pray for a friend of mine... A. A's kitchen caught on fire Monday night, and did right much damage to the kitchen and some smoke damage in other parts of the house. A's family has been through a lot in the past couple of years. It seems like it's one thing after another. We were just talking about going to the Cayman Islands with them this summer. I'm not sure if that will still be on or not.

Here is just one more reason I am thankful for my Mac! :)

I hope all of you are having a great hump day. I'll update after my appointment tomorrow.

Results

My kidney transplant coordinator called this morning. The results show Prograf toxicity. This is better news than rejection of course. Prograf is the anti-rejection medication that I have been on since my lung transplant in 2001. They think that it is part of the reason my native kidneys failed in the first place. It's definitely hard on the kidneys! So, now that they see it is affecting my new kidney, they are going to first start by lowering my dose.

Prograf is monitored according to its level in your blood stream. They usually keep my level around 7-9. With a kidney transplant, you can keep it much lower than that, but with lungs, it gets trickier, because they are much more likely to reject than a kidney. Since I did receive relative's organs, and am a little less likely to reject than someone who received organs from a non-relative, my lung transplant pulmonologist has agreed that my Prograf level can be kept at around 5 or 6, but he doesn't want it any lower than that. If for some reason that doesn't help my kidney function, then they will have to think about switching my Prograf to another anti-rejection medication. I see my lung doc next Thursday, so they will do labs then and look at my kidney function and my Prograf level.

For all you Twilighters out there, I'm sure you know the movie comes out at 12:01 tonight. Casey and several of her friends are having a Twilight party tonight (yeah, another one) and going to the store at midnight. We had it pre-ordered from Amazon and it will be here Monday. I didn't go to the theater to see it because of my hearing loss, so I am very eager to see it at home with closed captioning. :)

Jason is feeling better, but still having a lot of dizziness when he stands. He's getting rehydrated though.

Thanks again for ALL of your many thoughts and prayers. You guys are the best!! I hope all of you have a wonderful, sunshiny weekend!!

Awaiting results...

That was absolutely the quickest hospital stay I've ever had! My creatinine was the same, so because it hadn't decreased, they went ahead and did a biopsy yesterday. Ok, not to be a wimp, but I REALLY didn't like having that biopsy done. Having gone through tons and tons of medical procedures, I wasn't at all nervous going in there, but when they actually started talking about sticking that long needle into my brand new kidney, I got a little anxious. It was a little painful, but the worst part was the clicking of the biopsy needle. Those of you who have had a biopsy know what I'm talking about. Even though I knew it was getting ready to happen, I still jumped about a foot off the table... haha! Then, the doc said, "Oh, we need to take one more biopsy just to be on the safe side". And here I thought everything was over and done with...

I had to lay on my back for 6 hours after the biopsy, even having to use the dreaded bedpan. Ughh! On the (very) bright side, my nephrologist let me go this morning, even though the biopsy results weren't back. Most of the biopsy results will be back tonight, but he thinks it's most likely going to be toxicity from my medication, so it's nothing that I would need to be in the hospital for. If by some small chance it is rejection that requires IV steroids, they will just have me come back to the hospital for a few days.

Jason didn't go with me. He was home with gastroenteritis (a stomach virus in case you don't know what that is). He is feeling better, but still has some nausea and well... you know the other part that comes with it. As Jason puts it, "One end has been in full reverse, and the other end has been in hyper-overdrive." Poor thing. I'm hoping I don't get it. We have some major anti-viral, anti-bacterial, anti-basically-everything wipes that we swiped from the hospital awhile back, so I'm going to go over every surface in the house with them that Jason has touched. Just some trivia for you... a friend of mine took a microbiology class and they found that Clorox/Lysol wipes don't kill the bugs, so they are a waste of money. I don't bother with those since she told me that... hence the swiping of these other ones. :)

I have soooo missed everyone's blogs. I will try to catch up on them later. I took my computer to the hospital, but left it in the car since I didn't think I'd be there too long. I hope all of you are doing well!

Biopsy next week

My kidney transplant appointment and possible biopsy have been moved from the 25th to the 18th. I'll most likely see the nephrologist in clinic, and then he will determine whether or not I need to stay in the hospital for the biopsy. My nurse called again today to tell me of the new date and to also tell me to come prepared to stay. I'm assuming that I will wait around in clinic for my labs to come back, and if they haven't improved, they will send me over to the hospital for at least an overnight stay. How long I stay will of course be determined by what the biopsy shows.

During the biopsy, they numb the area over the kidney, and insert a needle, like the one above, through the skin until they reach the kidney. They then take a small piece of the kidney to be sent to pathology for testing. They will test it for infections, rejection, medication toxicity, and probably other things I don't know about. I should know pretty quickly what it shows, but say if it's an infection, we might not know exactly what "bug" we are dealing with for a couple of days. My nurse does expect it to be prograf toxicity or rejection. I'm a tough case because of my lung transplant, and any increase or decrease in anti-rejection meds can affect my lungs, so they will have to work very closely with my lung team before making any changes to my medication.

My nausea is better today, so maybe my body is preparing itself for The Cheesecake Factory tomorrow. ☺

Creeping Creatinine

I'm sorry I've been MIA the past couple of days. I've so missed out on my fellow blogger's lives. It's been a tough couple of days emotionally and physically, but I'm feeling better today. :)

Ok, so I went to the kidney transplant clinic on Wednesday. It seems that my creatinine is slowly creeping upward. I'll be honest, I'm not really sure what this means, other than my kidney isn't functioning as well as it was in December. It has gone from 0.5 to 1.2. I'm also not sure what the docs are going to do about it, if anything. My transplant coordinator called me today to tell me about it, and said that she has yet to talk to a doctor about it. She has several of them paged, but hasn't heard back from them yet. I've done the dangerous thing and read on the internet that a "creeping creatinine" can mean chronic rejection, but I personally don't think that's what is going on, so I'll just wait to hear back from my nurse.

I am also back to having the nausea that I had prior to kidney transplant. I am convinced now that this is due to the anti-rejection med called Cellcept that I'm taking. I believe that the high doses of prednisone (that make you so hungry you would eat the kitchen sink if there were nothing else in site) were masking this nausea. Now that I'm down to a low dose, it has come back. I'm still eating, but find it a struggle. Yesterday, I had to break down and take a phenergan, which always knocks me out. I see my lung transplant pulmonologist in late March. He is the one who would lower the dose of Cellcept if that's possible. I was put on it, because he thought I was having some chronic rejection of my lungs almost 2 years ago. It did bring my lung function back up, so I know it's working. I would hate to stop it, or lower the dose and have my numbers drop again.

On a different note... I finished my photography class. I take the final exam today after I do some much needed reviewing. I finally got my photoshop/Creative Suite 4 activated yesterday and started playing around with it last night. I have a ton of tutorials to watch. I also start my next photography class on the 18th. I'm really starting to love all of this. I just can't get enough!!

Casey is at her dad's this weekend. I'm not really sure what Jason and I are going to be doing except make a trip to the health food store. It is only about 20 minutes away from here, but we just can't seem to make time to go there. I have a whole shopping list, so we can try to stock up this weekend. They have a lot of low sodium, or sodium-free foods that I just can't find anywhere else.

I'll keep you updated on my kidney :), and I hope all of you have a great weekend.

Hot Chocolate, Strep Throat, and Answers

My baby has Strep Throat. She started getting a sore throat last night, and she had red dots (petechiae) on her palate in front of her tonsils. This is a SURE sign of Strep Throat for Casey. This morning, she woke up with a fever, headache, sore throat and a stomach ache... all sure signs of Strep for her. I called the doc's office which was closed, but talked to an on-call nurse, and thankfully, her doctor called in an antibiotic for her. I'm so thankful for doctor's who trust a mom's judgement. 

Casey wasn't able to play in the snow today. I did let her go out for about 15 minutes, but she was ready to come back in and enjoy a nice cup of hot chocolate after that! She was also craving fried chicken, so I sent Jason to the store for chicken, and we made fried chicken, mashed potatoes, gravy and biscuits. Casey is feeling much better now! Since they are out of school tomorrow again because of the snow, she won't have any make-up work to do. Yay! She and Jason are playing "Little Big Planet" now.

Thanks to my friends who asked questions on my Q&A. I would love to see all my blogger friends do this. It gives me a chance to be nosey! LOL.

Here are my answers:

I've noticed that you have met up with some post-tx'ers w/ CF and CF'ers.. What has your doc told you about contact precautions? I haven't really asked my doc, but do you know if it's less of a concern post tx?

I cannot remember what my doctor told me about this Sara. I think since we are immunosuppressed, we are still as susceptible to any bug that a pre-transplant CFer has. When I met one of my friends who has Cepacia, we stayed outside when we could, I didn’t touch things that he touched, I washed my hands a lot, and other than a hug, everyone in our group obeyed the 3 foot rule with him. I wouldn’t be hesitant to meet anyone with CF as long as these precautions are taken.

Is Jason EVER serious?!?! Do you have to do what I do and tell him it's a serious conversation so he won't start with the joking? :)

Is Jason ever serious? Honestly Laryssa, not very often!! Casey and I are always saying “Jason, I’m serious.” And sometimes I don’t get his jokes. He’s way over my head a lot. Haha. I think this is one reason he handles my illness so well. Whether I’m laid up in the hospital or feeling great, he’s ejecting humor into the conversation.

How often do you have to renew your license and if you aren't ever going to go back to the medical field why do you renew it?

Somer, you have to renew every 2 years. Actually, my license is in an “inactive” status right now (hopefully for just a short time). As of this past renewal, you have to show that you have had continuing education. I haven’t, unless you count all the nursing care I do on myself. ☺ This is a new thing for licenses in NC. I am looking into that right now, and plan on doing that soon. As long as I do it within 5 years, my license can be put back on active status. The reason I have kept it up for all these years?? Up until the past 3 years, I kept thinking I might work in nursing again. Then after that, we had a flu clinic at my church 2 years in a row that I helped out with. If I ever do anymore volunteer work like that again (that requires me to use my nursing skills), I’ll need to have a license.

How much (if at all) is your CF team still involved in your care? I know that post-tx you have a tx pulmonologist, but are you still seen in the regular CF clinic?

Piper, I don’t see a CF doc at all. For several years after my transplant, my transplant pulmonologist handled pretty much everything like a primary care doctor would. I’ve never had too many CF stomach issues, and have adjusted my pancrealipase as needed. I have noticed recently that my tx pulmo doesn’t want to handle the small things though that aren’t related to my transplant, so I probably should find a primary care doc. I would recommend NOT leaving your CF doc if you really like them. My tx pulmo would probably prefer that I had one, as long as he was still in charge of most of my medications.

I received these questions via email from my friend Amanda…

Just thought I'd ask if that kidney settled in. Do you go to the bathroom normal now? How has this last transplant affected your Mom?

No, my kidney hasn’t settled in. I still have a bulge, and I think I always will. My frame is so small and the kidney is very large. It has lots of filtering ability though. ☺

I go to the bathroom like I did before kidney disease. I have never been one to go that much, even now that I’m drinking 2 liters of fluids a day and taking a diuretic. My creatinine is fine though and my kidney seems to be healthy, so I guess it’s just my body. I do however, have a lot more volume when I do go.

My mom is doing great. She doesn’t have the appetite that she had pre-transplant, but I don’t think she minds that too much. Some of her tastes have changed too, but that has also happened to me. We don’t know why that’s happened. She is exercising, keeping my nephew, and looking and feeling great!

One more from Mandy...

I noticed your profile says that you weren't diagnosed with CF until age 4? What were the signs/symptoms?

My only symptom as a baby/toddler/pre-schooler was malabsorption. I think I did get colds easily, but I didn't have any lung infections. When the doctors tested me for CF at 16 months and it was negative, they had my parents start me on a gluten free diet thinking I might have Celiac disease. That didn't help obviously, so finally they sent me to a hospital about 4 hours away from my hometown when I was 4 to try to figure out a diagnosis. They again did a sweat test which turned out to be positive.

Oh and by the way.. the reason there are no makeover pictures is because none of us got up in time on Saturday to make the appointment, plus they charged $30. My friend Carol and I both agreed that if the girls were going to a dance or party, it might be worth it, but not just for a random makeover. We did however make it to Ulta and to the mall. As per the usual, Casey and her friend Michele got new clothes, and the moms didn't. LOL. Carol and I are planning on going shopping soon though just for us!! :) 

Say Whaaaaaaaat?

Check this out! That's NOT the way they removed my mom's kidney.

If you are overwhelmed.....

If you are like me, you get overwhelmed sometimes trying to keep up with everyone in the blog community. I find myself during times of prayer, praying for the wrong child, or saying the wrong name, etc. At least God knows who I'm supposed to be praying for. Whew.. it gets overwhelming sometimes. I don't think as clearly as I used to, and I blame a lot of it on the transplant medications. They affect memory, and I just don't feel as sharp. So, to all of my fellow bloggers, if I ever call you the wrong name, or call your child the wrong name, please forgive me. I do mean well.

Now, for all of my new readers, and for those who are overwhelmed like me, I am going to "catch you up". Here is a quick "about me":

My name is Christy.. as if you didn't know.

I was diagnosed with Cystic Fibrosis at 4 years old.

I am an RN, but retired in 1998 because of my health. I do keep up my license though.

I had a living related lobar transplant in 2001 at Duke University Medical Center. In other words, they removed both of my lungs and replaced them with a lobe from my mom and a lobe from my uncle. They are both doing great!

I do not have CF in my new lungs (and never will), but still have CF in the rest of my body.

I have diabetes, fibromyalgia, osteoporosis, gallstones, irritable bowel syndrome, and chronic sinusitis.

I had the nissen fundoplication surgery (stomach wrap) to treat reflux 3 weeks after my lung transplant.

I started having kidney problems about 4 years after my lung transplant. This was caused by the anti-rejection meds, diabetes, and high blood pressure (due to the meds).

I had a kidney transplant donated by my mom this past November. She is doing great!

My kidney is functioning beautifully.

I started showing signs of chronic rejection of my lungs almost 2 years ago. They started me on some new medications that seem to have helped that. 

My lung function averages around 75%. Some post-transplanters can get above 100% after receiving new lungs, but I only got lobes, so I'll never get that high. 

I have had 4 sinus surgeries, the most recent being a week ago.

I still have a port-a-cath, because I have to receive IV antibiotics for my chronic sinusitis once or twice a year.

I average about 42 pills a day (yes, they are all legal).. give or take a few depending on my condition(s).

My husband's name is Jason.

We just celebrated our 3rd anniversary on Valentine's Day. You can read about how we met here.

I have a 13 year old daughter named Casey. You can read more about her here.

She does not have CF, but she does have asthma and allergies.

My parents and sister live very close to me. They moved here to be with me before my lung transplant, because I was so sick. They loved it and stayed. :)


I encourage all of my fellow bloggers to do a quick "about me" (ok, maybe mine wasn't so quick). That way, for those of us who are overwhelmed, we can quickly catch up. :)

Why I almost ate a whole pound of M&M's

When I was younger, probably 10 or so, I was told that sitting down with a carton of ice cream and eating the WHOLE thing will cure depression. I tried it once.. it does help.

I knew it would come. I was expecting it. I was prepared for it. But that doesn't mean I have to like it. I'm having some post-transplant depression. Not the "I can't go on living", "my life has no meaning", "I'm so miserable I can't get out of bed" depression. I just have the flat affect, blah depression. It happened after my lung transplant too. As a nurse in the post cardiac surgery unit years ago, I would talk to my patients about the possibility of depression after they got home and were feeling better. Everyone always wondered why the depression came AFTER they were better instead of before. I'm still not sure of the reasons, but it's a reality for a lot of folks.

I know I'll get better. I am not hopeless by any means, and I don't think I need an anti-depressant to get through this. It's just going to take some time to get back to feeling like myself again. I have everything in the world to be thankful for. I do know that, and that makes me feel a little guilty for having these feelings.

So.... that's why I almost ate a whole pound of M&M's, and took a whole lot of insulin to go with it. :)

Nap time

Well, I just got back from ultrasound. My kidney function numbers are a little off today and I'm having some swelling around my new kidney, so they wanted to ultrasound me and make sure everything looks good. They want to rule out a lymphocele around the kidney. If the ultrasound looks abnormal then I'll have to have a consult with the kidney docs before being discharged. If it's normal, I may get to go home today.

The pain is much better today! I'm only needing oral pain meds every 6 or so hours. I keep thinking I have food stuck up under my lip, but it's just my stitches. They feel very weird to me. The ENT docs and lung docs have seen me today and both agree that things look good in those areas.

I'm thinking it's nap time since I didn't get but about 2 1/2 hours of sleep last night. Hopefully when I wake up, the ultrasound results will be back.

Thanks so much again for your thoughts and prayers. You guys are absolute best!!!

Update and prayers

I'm sorry I haven't updated on Jenn, but I haven't heard any news at all. I keep checking my CF forums for updates, but so far there are none. I am praying that no news is good news! I will update as soon as I hear/read something.

I've been having some edema (swelling) that I normally don't have, so I am headed out to get blood work to make sure my kidney function is stable. I still haven't heard back from the ENT on a surgery date, so I guess I'll be calling them again in the next day or 2 to see if it's scheduled.

Casey was out of school yesterday because of the tiny amount of snow we had. By 9:00, it was mostly melted.. LOL, but it was really nice having her home all day.

I'm almost caught up on my photography class. I have a few small assignments to do today, and I should be caught up. I have learned a little, and hope to learn a lot more in the next class that I'm taking in March.

Please keep my dear friend (and living-related lobar sister) Lori in your prayers. She was the first transplant recipient I ever met. She had the 2nd living-related lobar transplant at Duke, and I had the 4th. What a great friend she's been to me. It has been almost 9 years since her transplant and she is experiencing some chronic rejection. She also has something else going on with her lungs that the docs can't put their finger on. She'll be getting a bronchoscopy (biopsy of the lobes) in about 2 weeks to hopefully get a diagnosis. Please pray that her numbers come back up and that she's feeling back to normal soon.

Party Room!!

We arrived at Duke about 6:00 and I was in my room by 7:00. We actually got one of the "party rooms" that has a sofa, frig, table and chairs, and tons more room than the other rooms. I have been coming to Duke for 8 years now and have only gotten a party room 3 or 4 times. Anyway, it's really for those who have a lot of guests, and well... I won't be having any (other than my hubby), but it's still nice to have extra room.

As I've blogged before, I have been having night sweats for several weeks now. They have gotten so bad now, that I have to change my clothes sometimes twice in a night and have to move from bed to bed because my sheets are so wet. Because of that, and because the Cipro doesn't seem to be taking care of my sinusitis, they have brought me in for some IV antibiotics. I was supposed to come in last Thursday, but they had no beds on the floor I need to be on, so they said to wait until today. Nurses on this floor are trained to do desensitizations, because this floor (the pulmonary floor) is also a step-down unit.

The last time I had night sweats this bad was when I had a mycobacterium in my lungs. They do not think that I have any mycobacteriums in my lungs, but they are going to do a blood culture and a sinus culture to make sure there isn't one in either of those places. These sweats could be coming from the pseudomonas that they know is in my sinuses already. It's just strange that it has never given me night sweats this bad. My body has changed a lot.. in a lot of different ways.. since kidney transplant, so it's possible this is just something else that has changed.

So... Jason and I are settled in. Casey is at her dad's. It was his birthday today, so it worked out well that she got to go be with him. I talked to her earlier and she was baking her dad a carrot cake. She was whispering on the phone and she said..."Mom, what do you do if you don't have any vegetable oil and the recipe calls for that?" I told her to use olive oil, and she had no idea that one could be substituted for the other. She later called and said it turned out great. :)

Jason is on his playstation.. no, he doesn't go anywhere without it.. haha. I have been going through admission paperwork with the nurse and intern. We have good interns this time around (the nurses have confirmed). When you are in a teaching hospital, you just never know what your gonna get.

They are supposed to come in later tonight and get blood cultures and sinus cultures. Who knows how late I'll be up for that, but that's ok, as long as they can start the desensitization tomorrow. If all goes well, I should be out by Wednesday, and will be on the IV's for a month. I see the ENT next week to discuss surgery options.

Thanks everyone for your thoughts, prayers, comments, phone calls, emails, etc... They mean so much to me!

You're Christy? Hmmm....

This dialogue took place between the fellow who saw me in clinic yesterday and myself...

Fellow (looking back and forth between me and my chart): Christy?

Me: Yes

Fellow: You're Christy?

Me: Yes

Fellow: Wow. Ok.

Silence as he looks at me and my chart several more times.

I smile.

He looks puzzled.

Fellow: You have quite the history.

I smile.

Fellow: I heard about your story a month or so ago.

Me: I keep hearing that.

He looks at chart again. Has puzzled look on his face.



Most of you CFers have heard the line before from others.. "Well, you don't LOOK sick." I guess the fellow was expecting me to look half dead. I wanted to say.. "Do you see anyone else in here with a moon face and a "manstache" from prednisone?", but of course there was no one else in the room.

Girl's weekend continued

Casey definitely had a full long weekend. She had a blast on Sunday skiing at Appalachian Ski Mountain with her best friend Megan. Casey hasn't been skiing since she was 9 years old. I am not "allowed" to do any sports that may cause injury, because of my osteoporosis. It's been almost 3 years now since I broke my arm from a fall while I was ice skating, soooo I'm glad Casey was able to go with a friend. She said she did pretty good and only fell once.

On Monday, we went to see Bride Wars. What a cute movie!!! We loved it. It didn't get very good reviews, but I don't see why. Marley and Me got better reviews and this movie was MUCH better. I think the critics sometimes don't even watch the movies that they critique. We also went out to eat with Casey's best friend on Monday. Casey was exhausted from her ski trip, so Monday night, she slept 13 1/2 hours.

Yesterday, we went to the mall with some friends of ours. Casey got 2 pairs of shoes, 2 shirts, and some jewelry. We then went to Ruby Tuesday to eat. What a mistake! I used to love that place, but their entire menu has changed, and basically it's just horrible food loaded with spices and salt to cover up how bad it is. It was also expensive for what you get. I will never go back. I'm getting really tired of those cookie cutter restaurants anyway. We went back to the mall after we ate and Casey and her friend Michele tried on prom dresses. It's great entertainment for them, and it's free!! LOL. They had so much fun trying on dresses. Here are a few pictures, but please excuse the blurriness. My hands shake from the medications I'm on, and Casey's camera doesn't have an image stabilizer, so this is what you get...





We went to Duke today for my kidney transplant appointment. I've been having some tenderness around my kidney incision, but the surgeon didn't think there was anything to be concerned about. He said he would wait until my labs come back, and if they didn't look as good as they have been, he would schedule an ultrasound. I also left a message for my lung transplant coordinator about my sinus issues. I don't think the Cipro is helping, and my pulmonologist wanted me to let him know if it wasn't. I think my sinuses are getting worse. My appointment with the ENT isn't for 2 more weeks, so I may have to go on IV's before then. They will call me back tomorrow probably.

After we left Duke, my mom, Casey and I ate at this wonderful Italian restaurant. Here is a picture of Casey outside the restaurant. As you can see, Durham got a little snow yesterday. Most of it has already melted though...



I dropped Casey off at her youth group meeting at our church a little while ago. She got her homework done today while she waited for me to see the doctor, so she's all set to go back to school tomorrow. :( She goes to her dad's house tonight.

Jason has been working everyday for a week now. He will be off Friday, Saturday and Sunday. If I don't have to go in the hospital for IV's, we are going to do some work around the house on Saturday, and go to his nephew's baptism on Sunday.

I'm getting ready to start my online photography class. I'll let you know how it goes. I'm also going to get on the treadmill tonight. It's been 4 days since I've been on it.

Quick update

I'm on my way to Duke for a kidney transplant appointment. It's the first time Casey is going with me to an appointment in years because of her school schedule, and because she's with her dad on Thursdays, which is the day I have my lung transplant appointments. It will be so nice to have her along!

I'll update on our awesome long weekend tonight. Casey goes to her dad's house tonight and back to school tomorrow. I'm not ready for our little vacation to end. She takes the SAT's on Saturday! I'm so nervous for her, even though they won't count for anything except to see where she stands as a 7th grader compared to the highschoolers.

Oh, and my photography class starts today! I'm nervous and excited!!!

Have a great day everyone. Check back later for updates.

Duke appointment

I saw my transplant pulmonologist (lung transplant doc) today at Duke. It's the first time I've seen him since before my kidney transplant. My lung function studies were a little lower than they were last time, and he is thinking it's because of my sinuses. For post-lung transplant patients who have chronic pseudomonas in their sinuses, it is crucial that we keep it from draining to our lungs. Obviously, if your sinuses are draining, you can't help but get some of that gunk in your lungs, but they want us to do the best we can at keeping it from flaring up and draining. We do this several different ways... irrigating the sinuses, using sinus nebulizers, going on antibiotics when you have a flare-up, and/or having sinus surgery. I have been taking oral Cipro, an antibiotic used to treat pseudomonas for a week now. I see some difference, but my doc isn't convinced it's going to do the trick. My ENT and pulmonologist discussed me having another sinus surgery last year, but chose to get me through kidney transplant first. My doc today told me that he is thinking I'm going to need it done soon. My ENT (who I see on Feb 3) doesn't like to do sinus surgeries in the winter time. He prefers to wait until springtime when the humidity level is up. My doc today told me that if he opts to wait that long, I will probably have to go on IV antibiotics before then to take care of this flare-up. The problem with me going on IV antibiotics of course, is that I have to be desensitized to ALL IV antibiotics, since I am allergic to them all. That requires an allergist consult, a hospitalization, and of course the risk that I will have an anaphylactic reaction to it. I am going to stay on the Cipro until I see my ENT, and we will decide the next course of action then. Again, this next sinus surgery will not be an easy one. They will cut up under my upper lip and go into my sinuses that way. It's a very painful surgery.

My labs looked good today, and so did my chest xray. My doc told me that the EBV test I had done 2 weeks ago showed a low level, but not a level to be concerned about. He also said the "knot" on my arm indicated some kind of trauma/hematoma, so again, nothing to worry about.

Because of my sinuses flaring up, my pulmonologist is all in favor of me lowering my prednisone quickly. I am going to call the nephrologist tomorrow and see about lowering my dose again. He says the quicker I get to 5 mg/day, the better.

Jason is working this weekend, so Casey and I are going to have a "girl's weekend". I'm sure it will involve shopping, movies, and cooking, but not sure what else. :)