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

My experience with rATG

I'm writing this blog post for two reasons. One, of course, is to update my friends and family, who are not on facebook, about my health. Two, to put my experience with rATG (Thymoglobulin, rabbit Anti-thymocyte Globulin) "out there in the cyber world" for those looking for other patient experiences with the drug. I found, when researching this myself, that there wasn't a whole lot out there.

As most of you know, my lung transplant pulmonologist believes from my recent drop in lung function and my recent xrays that I'm experiencing chronic rejection of my lungs. This is where scar tissue develops in the small airways of the transplanted lungs as a result of white blood cells (lymphocytes) attacking the area. My lungs are not a part of me, and therefore are being attacked by my own lymphocytes.

rATG is a medication that is used to treat chronic rejection. It kills the body's white blood cells in hopes of stopping the attack on the transplanted organs. So, what are the side effects of rATG? Normal reactions or short-term side effects to rATG are flu-like symptoms, like fever/chills, nausea, headache, drop in blood pressure, and increased risk of bleeding (infection and lymphoma can be long-term side effects, so I have to be sure to report any night sweats that might come weeks or months after taking this).

Well I took the short-term side effects a little too far. Even after being given IV Benadryl, IV Zofran, IV solumedrol and oral Tylenol, I had a full inflammatory response to the medication. Thirty minutes into my first infusion, I had complete and total full-body pain!!! I can honestly say that it was the worst pain I have ever experienced. The medication was stopped, and I was given IV Dilaudid and more IV Benadryl. Because this wasn't considered an allergy to rATG, I was once again started on rATG the next day after being pre-medicated with the usual meds plus IV Dilaudid. Other than some pain and itching, I did fine with the next 3 doses.

As a precaution, I am on IV Ceftazadime (antibiotic), oral Cipro (antibiotic), IV Gangcyclovir (anti-viral), and inhaled (via sinus nebulizer) Colistin (antibiotic), to try and prevent any infection since my immune system is so depressed right now. I will be on these medications for 3 weeks. Thankfully, I was able to go home after my last dose of rATG. The hospital is the worst place to be when you are immunocompromised and at risk of infection.

I will go back to Duke in 4 weeks to see my transplant pulmonologist. We are hoping that my lung function will have improved at that point. If not, my doctor will most likely give me Campath, which is similar to rATG, but much stronger and can wipe your immune system out for up to 12 months. We are hoping it doesn't get to that point. I do know of several other recipients who's lung function responded to the rATG, and I'm hoping I am one of them. :)

So, that's a rundown of my week at Duke. I am so thankful for my wonderful doctors and nurses!!! I have been home now for almost a week. I have slept most of the week away, but am feeling much better! I am definitely staying away from crowds for at least another couple of weeks.

Finally a plan!

Well, most of you know I've been an inpatient at Duke since Monday. I came here to get rATG, a medication that basically wipes out your immune system. They are hopeful that my lung function will come back up with that, and the chronic rejection will be stabilized with it.

After talking with one of the lung transplant pulmonologists, she thought that it would be a good idea to desensitize me to an IV antibiotic and keep me on it for several weeks (the duration of time that rATG normally keeps your immune system suppressed). The reason for this is my chronic sinusitis, and the tendency for it to flare up and cause an acute infection in my sinuses, which could potentially go to my lungs. I was desensitized to Ceftazidime on Tuesday.

I was supposed to start the rATG yesterday, but my labs showed that once again my bone marrow was suppressed and not producing the red and white blood cells like it should. My numbers had fallen quite a bit from last week's clinic visit to yesterday morning. Because of the drop, it would mean that my body would have a harder time fighting off infection if I would have gotten the rATG yesterday. They decided to hold off on it, and give me two medications that increase the bone marrow production of both white and red cells. They wanted to wait and check my labs today to make sure my bone marrow responded to these two meds.

My labs this morning DID show a big improvement in just one day from the medications. That means that my bone marrow should keep responding, and that rATG should be safe to give. Therefore, and a BIG YAY FOR THIS, I'll be getting my first dose sometime in the next few hours. Side effects from this medication are basically flu-like symptoms, so I may not be feeling the greatest for awhile. If I do well with it, I should be able to go home Sunday or Monday. I'll be on the IV antibiotic and an oral antibiotic at home for 3 weeks, and another IV anti-viral medication that they give after giving rATG. They will also keep me on the two medications they started yesterday that are helping out my bone marrow.

I know it sounds confusing that they would want to raise my white blood cells with the medication they started yesterday, only to suppress them today with the rATG, but there are several different kinds of white blood cells, and all of mine have been suppressed with my bone marrow. With the rATG, they basically want to lower the lymphocytes that target b and t cells and therefore can cause rejection. Neutrophils are the white blood cells that kill off viruses and bacteria, and I need those, so that's the reason for bringing all of them all up first. I hope that made sense. :)

I'll keep everyone posted on how this all turns out. They won't know for awhile if the rATG has helped or not. I'm not sure when I will come back to clinic to repeat my chest xray and have pulmonary function tests again. I hope all of you are doing well!!! Love to all!

Things to do before tomorrow

Everyone else going into the hospital tries to get too much done the day before also?? Right? Yeah, that's what I thought.

I'm making my list while I enjoy my coffee. :)

1.) Shower and shave! ha!

2.) Finish laundry

3.) Pack clothes/toiletries

4.) Make sure house is clean

5.) Pack up meds, diabetic supplies, nasal irrigation, OTC's

6.) Fill bird feeder

7.) Bathe doggies

8.) Call necessary people

9.) Pack up laptop and accessories

10.) Pack up camera and accessories

11.) Go to Target for snacks and other items

12.) Go to library

14.) Access port-a-cath

13.) Give TONS of love to Casey and the pups!!!


I am hoping they get started tomorrow on the rATG, but have a feeling it will be Tuesday. I am assuming I will have to have a nurse with me the entire first dose to monitor for reactions, so that requires an extra staff person (just like when I get desensitized to an antibiotic). That means scheduling changes, and that usually takes a day.

I forgot to mention in my last post that not only are they seeing changes with my lung function tests, but they are also seeing changes on my xray. They have noticed that my smaller airways are stretched out a bit, which means that air is getting in there and getting trapped and cannot get out. The reason for that is the scar tissue that develops there when you get chronic rejection. They are hoping this med will help that issue also.

Ok, coffee is done and I have to get busy. I'll be facebooking and blogging this week, and I'm sure for those of you on my FB, you will continue to see goofy pics that Jason feels the need to take. You know.. the sign pictures. LOL!!!!

Have a great week everyone, and please keep me and all of my CF friends in your thoughts and prayers. Many are struggling! Thanks!! Love to all!

Good? No!!! But that's ok....

All righty!!!! I saw my lung transplant pulmonologist today. Before I saw him, I had the normal pulmonary function tests, chest xray and blood work done. First, I'll give you the GOOD news. :)

My blood counts are up, which is a very good thing. My bone marrow seems to be coming out of its depression and producing those red and white blood cells like it's supposed to! Whoo hoo! Go bone marrow!!!

On the other hand........

My lung function tests remain about the same. I was really thinking that little percentage increase was going to make a difference, but my doc informed me that it's still quite a bit lower than it was 2 months ago. Sooooooo of course being the aggressive (thank God.. literally thank God) doc that he is, decided to do something about it!!!!!

Pending a negative CT scan that I had today (meaning there is no infection hiding in my lungs), I will be admitted next week for some good ole rATG!!! It's a medication that pretty much wipes out your immune system to stop any rejection that might be going on. We are hoping and praying that it works. My pulmonologist didn't want to put me on Campath, which is a much stronger med, because I seem to be very "infectious" and get infections very easily. He didn't want to push it unless he has to!!!

So it seems I'll be spending a few days at Duke. At least it will help me catch up on my Photoshop classes, huh? :) I'm not really worried. My doc is so aggressive and catches things early. Chronic rejection is so common for anyone 5 years or more out of lung transplant, and I'm over 8 years out!!!! The lungs are the one organ that seems to reject much easier, because it is exposed to the outside environment, unlike other organs.. sayyyyyy like my new kidney. If this rATG doesn't work, then my doc will just try something else. I have all the confidence in the world with Duke's transplant program. SO, so happy to be a patient there. I feel totally blessed!

OK, so that is really all I have to say. I'll update if my CT looks good and my orders are written for admission next week. Love to all!!!!

A blog post

I really didn't know what to name this post. Sometimes I feel like I have to blog just to say hi to those who don't follow me on facebook, and of course to give a little more detail than I do on facebook... I mean come on... it only allows for so many characters per status message, and you don't want to sit all day and post status updates..... well, most ppl don't.

Just a few things going on in my life...

1.) Jason is snoring.. I mean right now he is snoring beside me. It doesn't help my insomnia at all, but at least my loving husband is going to get a sleep study this Friday. We are thinking he may have some sleep apnea and might need a C Pap machine. I just want something to fix it, and so does he, because he wakes up so tired. We are definitely enjoying him on first shift though, and haven't noticed a big change in his paycheck yet. It will catch up with us, I'm sure. LOL.

2.) I don't like to be one of those bragging moms, but I do have to do a tad bit about Casey. She tells me last week, the night before report cards are supposed to be issued, that she might be getting a B... OH MY!!! She was SO worried. I promised her that a B in 8th grade was not going to hurt her when it comes to college admission. She so wants to go to Duke and is afraid that she will hurt that chance if she slacks at all right now. Well of course she had straight A's in all 8 classes. Most of them were 100s, one a 99, one a 98 and one a 97. I'm so proud of her!!!! She is also in several clubs, including the Beta club at her school. She works hard, and I'm so proud of her for it. She will start back her piano lessons soon.

3.) This weekend is Jason's and my 4th year anniversary, AND my parent's 47th (?) anniversary.... wow! It feels longer than 4 years for Jason and me, but maybe that's because I was married almost 10 years the first time. That makes me sound really old, huh? We are meeting some friends at a Japanese steakhouse nearby. Casey is also taking a friend. We were thinking The Melting Pot, but we did that last year, and wanted something different. I'm so happy to be with a loving, thoughtful man, who also loves my daughter and takes care of both of us. :)

4.) I'm working out like a crazy person!!! I hope it lasts. haha. I'm doing several DVD's, one of which is the Biggest Loser Bootcamp. I love it!!!!!!!! Of course it's hard right now to stand up from a sitting position, because I am so sore, but I'm sure that will get better.

5.) I go see my pulmonologist on the 18th. We will see how my pulmonary function tests look and he will decide whether or not I need to be treated for chronic rejection. I'm praying that my small airways are better. I haven't had to use an inhaler the past few times I've exercised, so that's good!!!! I'm also meeting a dear friend of mine for lunch on that day. Her name is Tiffany, and I have heard her speak before to medical professionals about their relationship with their patients... she was awesome... and I met her briefly, but other than that, we have only had correspondence on facebook. She has CF and has had TWO double lung transplants... what an inspiration.

6.) The Charlotte Observer is doing an article on my Mom and me for Mother's Day. What a great way to bring recognition to my mom for giving me life 3 times, to bring awareness to Cystic Fibrosis, and organ donation. They are going to come interview my mom, Casey and me in a couple of weeks.

7.) My hair is growing... FAST! I'm so happy about that. It straightens out a bit as it grows longer and is much easier to manage. I can get a small ponytail now. :)

8.) My photoshop class is coming along. The last class took me 5 hours to complete, because of all the work involved and the assignments afterward, but at least I'm learning. I still have about 3 classes to catch up on.

9.) I ordered new glasses today. The cutest Coach glasses called Hilary. They fit my face perfectly. I will get them in 5 to 7 days. My prescription hasn't changed that much, only slightly, but I still need new frames.

10.) Jason and I start a new Lifegroup on Thursday. It's a small group of Christian people who get together and connect. We do have lessons to do and reading to do that we discuss, but it's mostly about fellowship. It's been awhile since we've been in a lifegroup, so we are excited... this 1st shift is giving us much more flexibility with our schedule!!! :)

I do want you all to keep my dear friend Lori in your thoughts and prayers. She is experiencing some chronic rejection that is a rare kind, and treatments are not the same as with the most common chronic rejection. Her center is in touch with Duke to figure out the best treatment plan.

I wish all of you a Happy Valentine's Day!!! Lots of love and hearts. :)

Bronchoscopy results

I just realized I hadn't posted my bronch results on my blog. They were negative for infection or rejection, which is good, but still doesn't rule out chronic rejection. I continue to have some wheezing with exercise which indicates something going on in my small airways, but other than that, I feel great. My pulmonologist wants me back in 4 weeks to repeat my pulmonary function tests again and see if my numbers have come back up. If not, he is thinking of starting me on a medication called Rituximab, hoping that it would reduce my high antibody count and therefore stabilize any rejection I might have going on. There are many other medications out there to try, so if one doesn't work, we can try another.

I was able to meet one of my CF friends on Monday. We knew each other through the internet, but had never met in person. Her name is Amy, and she had her double lung transplant at Duke 4 months after me. It was so exciting to meet her!!! We hope to meet her hubby Roger soon!

I started my online Photoshop class last week. I haven't learned a whole lot yet, but I know that it is going to be very helpful. I'm hoping to really enhance my photos with it. I know it takes years to master Photoshop though, and my old brain isn't what it used to be. LOL.

Jason and Casey are doing well. Jason is adjusting to first shift with his job! It's nice to have him home for dinner and home at night. Casey gets report cards today. She's pretty sure she has all A's. I'm so proud of her for working so hard. She is thinking now that she might want to work for the FBI instead of becoming a doctor. I don't know about you, but when I was her age, I changed my mind about my future every week or so. I never dreamed at that age that I would ever want to become a nurse. Casey's step-mom has a sister and brother-in-law who work for the FBI, so if she becomes serious about this, she has people who can tell her all about how it is in REAL life, instead of how it's portrayed on TV. :)

I'll leave you with some random photos. I hope all of you are doing well and having a great winter....

Bronchoscopy number 486

...Ok, not really, but sometimes it feels like it. I have had many of them since my lung transplant over 8 years ago, but not quite that many (I don't think).

I went to Duke yesterday for another bronchoscopy (biopsy of lungs) and a visit with my lung transplant pulmonologist. I had some acute rejection back in October and did some IV steroids and a prednisone taper for it. I went for a follow-up bronch in November, and everything came back clear. No rejection or infection. This was to be my last follow-up bronch due to the rejection, and then I would just go back to my yearly bronch like normal.

Before my bronch yesterday, I had blood work, pulmonary function tests (pfts), and an xray done. My pulmonary function tests were down quite a bit since my last visit. My total lung capacity was only down about 4%, but the number that indicates how your smaller airways are working was down 17%. I had my bronch, and just like last time, had an allergic reaction to something. I believe they have switched the medication that numbs the back of your throat, because the meds they use to sedate me are still the same. Anyway, on top of the sedating medications, I had to get 50 ml of IV benadryl. The rest of the day is a little blurry, because of all of that.

After the bronch, I saw my pulmonologist, and he explains to me that my blood work shows that I have bone marrow suppression. This means that my blood cell counts are really low... both red and white. I'm even more anemic than I was at my nephrology appointment last week, and my white cells are down even lower too. My pulmonologist believes that the combination of two of my medications are doing this, so he has discontinued one of them. It is the medicine that prevents me from getting CMV or cytomegalovirus. Because I was CMV negative at the time of my lung transplant and my mom was CMV positive (in other words, she had the virus sometime in her life, and I hadn't), it put me at risk of developing the virus. For someone healthy, this doesn't mean much, but for someone immunosuppressed, it can cause a lot of problems if you get this virus in your lungs or intestines. I have had it in my blood twice since transplant, but it was treated with an IV medication. Now that I won't be on the medication to prevent it, there will be a chance of me getting it again, but that's the chance my doctor is willing to take, because bone marrow suppression can be much worse and can keep me from fighting off ANY infection. The other med that was aiding to this suppression is one of my anti-rejection medications called Cellcept, and especially because of my recent rejection, he did not want to discontinue that one. He is hoping that my counts will be up in a few weeks.

Now concerning my smaller airways and my lower pfts, he is thinking we might see some rejection or infection on this bronchoscopy. The results will not be back until Monday unfortunately. If it is a negative bronchoscopy (in other words, nothing shows up), then he thinks this is probably just continuation of my chronic rejection, which started back in 2007. Chronic rejection can progress at different rates, and differs from acute rejection in that acute rejection is usually taken care of with a round of steroids, whereas chronic rejection is very unpredictable and can be slowed down, but not really stopped for good. You can have a sudden drop in your lung function and then stabilize for years, or it can be fast and you can lose all lung function over a period of months. My chronic rejection has previously been treated with Cellcept and Azithromycin. That seemed to stabilize everything. Now that my lung function is dropping again, if the doctor suspects it's the chronic rejection doing it, he will decide on a course of treatment. I asked him yesterday what that might be, and he said he won't make that decision until my bronch results come back.

This is just going to be a waiting game to see if my blood counts come back up, and to see what my lung function does. I recently started exercising again, and it seems that every time I start to get in shape again, something sets me back. I'm going to attribute that to being allergic to exercise!!! :) Just kidding... I won't let any of this stop me from continuing my exercise regimen. I will post again on Monday after I get the results. Love to all!

If I have any readers left at all...

then maybe this post won't be for nothing. :)

Facebook is my go-to place now for info on my friends and to keep everyone updated on me. I'll try to catch up my blogger readers now.

Since my last post, Casey has started a new school, and she really loves it. It is A LOT of work and very challenging, but the environment is more of an academic environment instead of a regular public school environment, so it's just what she needed. Her goal is still to go to Duke University and go to med school. She still has her sites set on becoming a surgeon, so we will see how that goes.

She has also been running cross country this year. She is doing so well with it. I was worried at first, because Casey is and probably always will be a toe-walker, so I was concerned about her running, but her doctor gave her approval, so that's all I needed to hear. I wouldn't say Casey is enjoying it, but she's dedicated. I really hope that she continues to run after the season is over next week.

Jason is doing well. He is still working 3rd shift, which is pretty tough, but we are just so thankful he has a job in this economy. He does sleep well during the day, so that's a big plus. As long as I can keep the pups quiet, Jason will sleep a good 8 hours during the day. I never did that when I worked 3rd. LOL.

As for me, I had a birthday since my last post. I'm now 39 and so thankful to have made it beyond the age my doctors ever thought I would. Every year is a blessing! Well, minus the wrinkles and saggy stuff. :)

I am currently experiencing some mild acute rejection of my lungs. Well, since my lobes are from 2 different donors, I'm really only experiencing rejection of one of them, but they didn't tell me which one, so I am not sure whether to blame my mom or my uncle. haha. I am finishing up my 3rd day of IV Medrol (a steroid), and will start on a taper of prednisone tomorrow and decrease each day until I reach my baseline of 5 mg/day. I will then have another bronchoscopy (where they take a biopsy of both of my lobes) in November to make sure the rejection is gone.

I am also dealing with the same hair loss that I had after my first transplant. I finally got an answer at my last lung transplant appointment as to why I am losing it. All of the proteins I take in have been going to my kidney transplant site to heal it. Therefore, my hair hasn't been getting the proteins it needs. I was told that typically if a transplant recipient is affected by this, the hair will start to fall out about 3 to 6 months post-transplant and continue for about 9 months. So, as soon as your hair starts falling out, new hair is replacing it. I have strands about 2 to 3 inches long from where it started falling out and coming back in about 6 months ago, and I still have long strands that are falling out. I will have to end up cutting a lot of my hair off again, but I don't think I'll have to cut it as short as I did after my first transplant. I'm also back to (or close to) my natural color again, which is brown. I'm mostly wearing hats or wearing my hair up now, since it's crazy with fly away pieces and very thin long pieces. Thankfully, my hair does grow pretty fast. :)

I am very happy that fall is finally here! I love fall and winter! We are planning on heading to the mountains in a couple of weeks to see the beautiful leaves before they all fall away.

I am still loving photography and got a new lens from my hubby for my birthday. I'm having fun with it, but of course have at least 3 other lenses I want to add to my camera bag. It certainly isn't the camera that costs so much in photography. But the lenses DO make all the difference. Casey is enjoying photography too, even though she has very little time for it right now with her schedule.

The pups are doing good. Balin has had some stomach problems, but they have now attributed that to stress. He still hasn't adjusted to Mia, and I don't know that he ever will. I keep them apart the best I can. I am loving Mia so much though. She is the cuddliest little dog I've ever had. She's now a whopping 3.5 lbs. She looks huge to me.. haha.

The rest of my family is doing great. Dad is still antiquing and Mom is still babysitting my nephew, who is now 4. He will go to kindergarten next year, which is amazing to me. Time flies. My niece Caroline is going to the same school as Casey and loves it as well. My sis and her family are all settled in their new home and are loving it.

As for our house, it's still not up for sale. I guess it will be one day. Now, I'm saying to Jason.. let's just wait until spring, but he says put a for sale sign in the front yard now. We are going to try to sell it ourselves first, and will then go to a realtor if it doesn't sell. The last house I sold on my own was bought by the first couple who looked at it, so I really hope we are that lucky again. With this economy though, I'm not so sure.

My friend Trenda recently had her 4th child, a little boy named Levi. I am so happy for them. She lives in my hometown in Virginia. I really need to get up to Virginia soon and visit my grandparents and other family members, and my many, many friends, some of whom I haven't seen in years. Now that I've gotten in touch with a lot of them again on facebook, I want to see them!!!! There was a reunion of sorts this past August, but I wasn't able to go, because of the side effects I was having from some IV meds I was on, so I'm hoping to at least make the next one... whenever that may be.

Here are a few pictures taken this fall. If you are a facebook friend, you've most likely seen them. If not, enjoy...