Guns and Labs

Duke called about my labs. My kidney function is doing better since lowering the Prograf (anti-rejection med), so they were very pleased about that. My hemoglobin is still pretty low, but that's probably due to the fact that I'm not eating that great because of the nausea. They are switching one of my anti-rejection meds to a different brand that's supposed to be easier on the stomach. I've tried it before, and it didn't help the nausea, but that was when I was in kidney failure, so that could have been the reason. My potassium is still low, but a few days of eating a couple of bananas a day will bring that back up.

Balin is running around like he has nothing wrong with him!! We have stopped all the meds, and he is still acting like he is fine. i guess it wasn't as bad as they said it was. It's so hard to keep him from jumping on things, because he's back to his hyper little self.

We finally made it to the gun range today. Casey's allergies were really bothering her yesterday, so we didn't attempt to go spend hours outside at the range. We went after we picked her up from school today. She is very accurate at shooting and really enjoys it. Here are some pics we took today...










Check this out everyone!! It's a friend of mine, who's a fellow CFer/transplant recipient, who just ran her first 1/2 marathon, AND it was only 8 months and 21 days after her double lung transplant! You will be amazed! What an inspiration you are to all of us Sara!

Sunday night blues

I've always had the Sunday night blues. I still have them, because Casey has to leave me to go to school on Monday. She doesn't have school tomorrow, so I guess this week, I'll have the Monday night blues.

Jason and I had a great time eating out with friends last night. We talked for hours! I actually wore my hearing aid and the restaurant wasn't too noisy, so I could hear pretty well. Casey was able to see her cousins from Pennsylvania. They stopped by for the night on their way to see their grandparents in Florida.

Tomorrow, we are taking Casey to the gun range. She has been shooting for several years now and loves it. I was also taught at a very young age. My dad was a police officer and took me to the range early on.

I hope all of you had a wonderful weekend. I'll leave you with a couple of pictures I took today...

Balin's back

We had to take Balin back to the vet this morning, because he seemed like he was in so much pain. They have determined that he has an inflamed disc in his back. He is on pain medicine and an anti-inflammatory. We cannot let him jump on any furniture for 4 weeks. We gave him pain med about an hour ago, and he's sleeping now. They said it might make him a little loopy. He's always been such a happy puppy, so it's really tough seeing him like this.

Casey is going to her dad's later today to spend some time with her cousins from PA. Jason and I are going to our favorite Italian restaurant with some friends of ours we haven't seen in about a year. They live about an hour away.

Is it rainy where you are? We have had rain for so long, that I can't even remember a sunny day. Don't get me wrong, I love rain, because we are literally begging for it every summer! BUT, I would like a day of sunshine every now and then. :) My sinuses are going crazy!

I need your thoughts and prayers for a friend of ours from church. His name is Clark, and he was diagnosed with bladder cancer about 6 months ago. It has now spread through his pelvis and into his hip. The doctors told him to call in hospice, but he and his wife didn't want to give up, so they are now going to Mexico for treatment in hopes that there is something that can be done. He is younger than I am.. 30 something... He and I used to do drama together at the church. Thanks guys!

Balin

Balin is still in pain, but they said it might take a couple of days for him to feel better. He has an upset tummy, and they told me to give him Pepcid. He is eating and doing all the other bodily functions like he should, but he still doesn't like to move, or jump up on the sofa or bed like he usually does. He doesn't mind us petting his head and ears, but he doesn't want the rest of his body touched. He's so pitiful! The veterinarian doesn't seem to be worried unless he starts vomiting or has diarrhea. He is eating a special food they gave us, so hopefully that will help.

Furious

So I get my disability check yesterday and it's $500 less than it usually is. I called them this morning, and they took out 5 months of premium payments for Medicare part B (the doctor's visits part, not the hospital part which is free). NOW.. I have never even seen them pay anything on my hospital part in the 8 years that I've had it, because my insurance has always been so good. I have had part B since November (because of my kidney transplant), and they haven't paid a cent on any of my medical bills since then either. Now granted, most of the bills have been paid by my insurance, but everything that my insurance doesn't pay is still subject to review by Medicare before they pay anything. Sooooo... when I was talking to the guy this morning, I said "Let me get this straight. I am paying you almost $100 a month in premiums, but yet you haven't paid anything on any of my claims yet?" He said "Yes that's right, but since you've met your deductible, we might pay now, depending on what's submitted and if anything is allowable." What the heck???????????????

My premiums for the year would be almost $1200. There is NO WAY they would pay that much in claims for me, since I have a primary insurance.

I remember them calling saying I had Medicare part B now, but no one ever told me I had to pay a premium. Since A has always been free, I had no idea. My stupidity I guess, but I just remember them almost congratulating me now that I qualify for part B!!

I disenrolled! I was furious. I don't get that $500 back, and they are going to take out April's premium too, since it won't go into affect until May. I am NOT saying nice things about our Federal government right now!!!

Sorry for the rant, but I'm really, really mad at the moment!

Amazing or what?

Average wait time for a cadaveric lung transplant at Duke is now 3 weeks!!! Can you believe it? This, of course, is after you get moved to the top of the list. I almost fell over when I found that out today. They aren't doing anymore lobar transplants though. They actually haven't in awhile. With a fairly new medication called Rituximab that lowers anti-human antibodies in your blood (the high anti-body count is the reason I had to have relative's lobes), AND with the short wait time for a cadaveric transplant.. they really don't need to. 

Anyone waiting (or who will be waiting) on a lung transplant should read this quick article.

So, I got to see my favvvvvvv doctor today! I really don't know what I'd do without him. I started going to Duke exactly 8 years ago this month, and he has been my doctor ever since. He's such a patient advocate! I had a doc like that in Charlotte too, but I don't see him anymore except for the occasional "pop in visit" to say hi.

My pfts (pulmonary function tests) are stable. My fev1 was a little up, my fvc was a little down, but overall they were stable which is good. My doc was very pleased with everything, but he did tell me I need to exercise more. :) My labs weren't back yet, so I'll hear about those tomorrow.

Balin, our toy poodle, is acting like he's in pain tonight when I touch his side. I'll most likely be taking him to the vet in the morning. I sure hope he's ok. He's actually sleeping right now, so that's good, but he sure doesn't want me picking him up.

Jason, Casey and I might go to the hockey game in Charlotte tomorrow night. We haven't decided yet. There is also a play at a local high school that's another possibility. Casey's cousins from Pennsylvania are coming through on Saturday on their way to Florida, so she'll go to her dad's on that day to see them. Jason and I have dinner plans with friends Saturday night. Casey is off of school on Monday. I'm so glad! Is it a holiday? I have no clue!!!

For all you girly girls out there, need a Beauty Fix?

I hope all of you have a wonderful weekend!!

Missing church

I'll admit I've not been going to church. At first my excuse was my kidney transplant, then it was because of the high anti-rejection meds and not wanting to be in a crowd and get sick, then it was my sinus surgery... well, now that I don't have an excuse, I really don't want one anymore. I want to go back to church. I have missed it. I'm missing being fed like I am when I go, and "fellowshipping" with other believers. My heart is yearning for God's house, and I'm going this weekend.

There are many reasons that I haven't wanted to go to church... most of which are very personal, so I won't get into them. I've been praying about it, and God is really speaking to me recently in so many ways. I'm sure my post-transplant depression has had something to do with making excuses not to go, but there are other things too, that I've been trying to work past.

Yes, I will go this weekend, and I'm really excited about it. Some of my church friends, I haven't seen since before transplant. I have been to church a few times since then, but our church is so big, with 5 services, that you just can't possibly see everyone.

I'm getting ready to read The Shack again. It's a most wonderful book, and really hits home to a lot I'm struggling with right now. If you haven't read it, maybe you should pick up a copy! I don't think you'll regret it. :)



I'll leave you with a goofy pic of Jason and me. He was talking on the phone, getting ready to leave for work about 30 minutes ago, and I said "Honey, let's get a pic in case we never see each other again." He thinks I'm nutz.

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.

Is this true?

During the presidential elections, I was a Bob Barr supporter. I consider myself a Libertarian.

This article has me a little concerned.

Is our freedom being taken away faster than we know it? I thought America was about being who you want to be and having your own opinion, even if it's different than the mainstream.

Park pics and... Oh yeah, Twilight

Ok, soooo I finally watched Twilight tonight. I have very mixed feelings about this movie. Having read the book first, like most, I found the movie to be a little disappointing. I was not looking forward to Kristen Stewart in the role of Bella, but she did a much better job than I thought she would. She still wouldn't be my first choice though.

Now, let's discuss Edward, who as all of you Twilight fans know, is supposed to be hunky gorgeous and irresistible. I'll agree that Robert Pattinson does have quite the charm, but (and this is a big but...LOL), he is one horrible actor. I put him on the same level as Ben Affleck, who in my opinion, is one of the worst actors in Hollywood. I did like all of the other actors in the movie. The girl who played Rosalie wouldn't be my first pick looks-wise, but she's a really good actress and seems to play the part well. Seriously though, what's up with Victoria's hair? It's supposed to be fire-red, isn't it? It was very muted in the movie.

Now, on to my absolute favorite thing about the movie... the cinematography! It blew me away! There were parts of the movie where I couldn't even pay attention to what the actors were saying, because of the brilliant shots. All I can say is WOW!

Ok, enough about Twilight, but if you haven't read the book yet, I really encourage you to do so.

We had my parents over for dinner last night. It was a great time. Today, Casey and I took some pics at the park. I hope you enjoy!!

This is one of Casey's nature shots. I keep telling her to add these to her blog. She has taken some really good ones over the past couple of months...

HUH?

That's what you'll hear me say a lot if you ever talk to me in person or on the phone. In response to Somer's comment on my last post, I thought I would tell you a little about my hearing loss.

Prior to my lung transplant, I was diagnosed with a very virulent infection called Mycobacterium Abscessus. In order to treat this, they had to put me on long-term IV antibiotics. The type of antibiotic I was treated with was called an aminoglycoside. I was on Tobramycin for one year, and Amikacin for about 18 months... a total of 2 1/2 years on IV antibiotics. This wouldn't have been so bad, had they not been damaging to my ears (ototoxic).

Because of this long-term treatment (that mainly kept my fevers at bay, but did not stop the mycobacterium from ruining my old lungs), I am now mostly deaf. I am functionally deaf in my left ear and have very little hearing in my right. I can use the phone with my right ear, but the other party has to speak very clearly in order for me to understand them. I find that speaking with other CFers is very difficult, because we all have that raspy "CF voice". Because I have mostly high frequency hearing loss, I can hear men a lot better than women.

Living with someone who has hearing loss can be very frustrating. I am so thankful that Jason and Casey have such patience with me. They are my interpreters. Whenever we are out somewhere and someone mumbles a question to me (and believe me, there are a lot of mumblers out there), I don't even have to ask Jason and Casey what they said, they automatically look at me and tell me. I don't understand Casey's friends either. I think it's a teenager thing to look down and mumble, or to talk fast. Casey articulates her words very well, because she knows she has to with me. She interprets everything her friends say to me. When Jason and Casey aren't with me, I find it very difficult to function in the outside world. Hearing loss isolates you. I am no longer outgoing, and I shy away from just about all social situations. If there is music in the background, I will just sit in the corner away from everyone, because I will not be able to hear anything.

I do have a hearing aid for my right ear. A nice digital one that cost an arm and a leg. It helps in some situations, like church, but when there is background noise like in restaurants, it doesn't really help that much. It has a setting that is for "noisy situations", but I don't find it that helpful. I'll be honest, half the time I don't even wear it.

This past hospitalization at Duke was very difficult. Jason wasn't with me to interpret what the nurses said, so I found myself just saying yeah to about everything they said. I read lips pretty well, but still have a difficult time with women who don't speak up. The male nurses and docs... I can hear pretty good.

They told me after I had my lung transplant (and was able to stop the IV antibiotics) that some of my hearing might come back. It didn't. It's actually gotten a little worse over the years for whatever reason. I also find that when I'm lacking sleep or dehydrated, the buzzing in my ear is a lot worse. This makes it very difficult to hear anyone unless they are close to me, looking at me, and speaking very loud and clear. I'm just so thankful for closed caption, because otherwise, the tv would just sound like a foreign language to me.

Funny story... when Casey first met my friend Lori (who unfortunately, also has hearing loss), she said "Mom, she has the same dumb look that you do". Lori and I thought that was hilarious. If you are one of the many CFers with hearing loss, you know just what she's talking about. It's that look that you give people when you have no idea what they just said, but you don't want to say "Could you speak up, because I can't hear you". LOL.

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!

Things...

We will be leaving for Duke in the morning about 6:30. I should know by noon if I'll be admitted tomorrow or not. Of course, I'm packed to be on the safe side. I'm praying my creatinine looks better tomorrow and I don't have to stay.

We had a great time at The Cheesecake Factory on Saturday, but seriously, they need to build another one of those in the Charlotte area. It was SO packed. We also went to a teen consignment store for Casey and her friend. Casey found some cute shirts there.

I hope all of you had a great SPD today. I'll leave you with some cute pics of my nephew Cole...

Happy St. Patrick's Day

I'll be posting more later, but just wanted to wish all of you a Happy St. Patty's Day!! Years ago, I threw a party for Casey on SPD and everyone wore green, we had green cupcakes, plates, punch, streamers, etc. It was fabulous!!!

Here is a four-leaf clover that I found while taking pictures of Casey and Michele last week. I always find them. All I have to do is look down. It's like they jump out at me for some reason. Maybe I'm lucky!!

Have a fun day wearing green everyone!

Pi Day

It's officially 3/14 or Pi day! As most of you know Pi is an infinite decimal and is pretty amazing. Casey is completely fascinated by Pi and after listening to this (you must go there and check it out, but I'll warn you, the tune will stay in your head all day... wait for the ad, then it will start), she can recite the decimal to 23 places. She's working on it and hopes to be up to 50 soon. There are middle school and high school students learning in the 100's or even 1000's. Talk about math enthusiasts.

Every year on Pi day, there are contests held to see just how many numbers people can recite. There is a man who can recite Pi to 100,000 decimal places. You can read about that here. Can you even imagine?

See Pi to 1,000,000 decimal places.

So to celebrate this fascinating, amazing number, I'm dedicating an entire post to Pi and encouraging all of you to eat some pie on Pi day!

Does cheesecake count? (According to wikipedia it does!!) :)

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. ☺

Not a Dummy for too much longer

We just received these 2 books in the mail. Yes, we are dummies now, but hopefully that's going to change. The flash is for Jason. The photoshop is for me.

My ENT appointment went well on Tuesday. I haven't heard back from Duke about my lab work though. I know it usually takes a couple of days for some of these viral tests to come back. I've been extremely tired and nauseous the past week. Me thinks it might be the medications, but we'll see.

Casey has a friend coming home with her tomorrow from school. They are going to a youth function at our church tomorrow night, and then on Saturday, we are going to The Cheesecake Factory for lunch and then to some vintage stores in Charlotte. Casey and her friends are all into the vintage look now. We are dragging Jason along. At least he will enjoy the lunch. :) I'm hoping my nausea doesn't rear it's ugly head on Saturday. I would hate to miss out on that meal.

In other news... my sis and her hubby just bought a new house. It's in the same neighborhood as the one they have now, but it's larger. I would love to move in their neighborhood. Hopefully, if Jason and I can sell our house this spring, we can look there. Just not really sure if that's going to happen in this market.

Casey has a consult with the orthodontist soon. She'll be getting the dreaded braces within the next month or so. I am hoping she won't have to have them on long. I only had mine for 18 months.

My new photography class starts next week. I'm really excited about it. This class is going to focus a lot on lighting. Something I'm still having trouble with. There is just so much to learn.

Ok that's all the randomness I can think of now. I hope all of you are having a wonderful week!

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UPDATE: Well, Duke just called. I tested negative for the viruses, but my creatinine is still going up, which is not a good sign. I have an appt. to go see the kidney transplant doc on the 25th, and they said I should plan on staying in the hospital for some tests and a biopsy of the kidney. Two things that she mentioned it could be are Prograf (an anti-rejection med) toxicity or rejection. The biopsy will most likely give them the answer. Please pray that whatever they find can be easily treated.

Yummy Italian

I just got home from meeting Jason at this wonderful Italian Restaurant called Pelligrino's that Jason and I love! Having been to Italy, we are very picky about our Italian food. Most "Americanized" Italian just doesn't cut it for us. It usually has heavy sauces and not a lot of fresh ingredients. Pelligrino's, however, is very authentic.

I was only able to enjoy about 10 bites before the nausea set in, but I did bring my wonderful "California Pasta" home to enjoy on a not-so-nauseous-day.