The Truth about Lung Transplantation

Most of those who are at end-stage lung disease hear this statement when considering lung transplantation as an option: "You are trading one illness for another". Ok yeah, that's true, but it is not a reason to say no to transplant.

I do have the greatest respect for my friends who decide that transplant isn't right for them though. I recently had a young Cystic Fibrosis friend pass away, because her center turned her down for transplant, and she said she didn't have the means to travel to another center. In my heart, I think she was just scared, and she didn't want to go through the transplant process. That is very understandable, since it is definitely a scary surgery/recovery.

When I was being evaluated for a transplant, and undergoing the treatments necessary to get me as healthy as could be for a lung transplant, I knew no one who had gone through the surgery. Even though we should be thankful for all of the online support groups now, and the forums, and facebook for giving us a pretty good picture of what lung transplant surgery looks like, I still am kind of thankful that I knew nothing about the process at the time. I did meet two young women after I had been evaluated and accepted into Duke's lung transplant program who had been through lung transplantation. One had done extremely well, and the other was struggling, even after almost a year post-transplant. I knew it was the end of my life with my old lungs. There was no question that I would go through the surgery. I went in with a positive attitude and also with faith that no matter the outcome, I would be going home... either to my family or to heaven!!! It got me through, and it was the only reason I was able to have peace through it all.

Fast forward almost 10 years. I see the reality of those who have had lung transplants. The lungs are the single most solid organ that is more likely to be rejected by your body than any other. Even though I do know someone who is 18 years out of double lung transplant, I don't know many who are more than 10 years out. It's a reality. It's definitely not something we obsess over or focus on, but it is reality. Again, that is why I support the Lung Transplant Foundation, who's main goal is to fund research by doctors like Scott Palmer at Duke, who continue to find ways to combat chronic rejection in those who've had lung transplants.

As most of my friends know, I had to have a kidney transplant 7 years after my double lung/living lobar transplant. This will happen to about 15% of those who've had lung transplants due to the damage the anti-rejection meds do to the kidneys. That is only one of the possible complications that come with lung transplantation. The risk of cancer is much greater in those who've had transplants, because the anti-rejection meds decrease your immunity. I've had several friends survive these cancers, several friends who are still fighting, and several friends who unfortunately lost their battle to cancer after successfully coming through a transplant.

I have squamous cell carcinoma on my scalp. It is spreading, and even though I have treated it with topical medication and cryotherapy, I am getting new patches almost every few weeks. If surgery is the only final option, I'm not sure how much scalp I will have left. I'm so thankful that it hasn't gone beyond the superficial layer and that I have a great dermatologist, but this is just a reality of post-transplantation for a lot of folks.

When looking for a center to be transplanted at, I want to remind all of my end-stage lung disease friends to look for a center that cares more about getting you 10 years out than getting you 2!!! I cannot stress this enough. Most transplant centers today can get you off the table and through recovery. MOST centers today cannot or rather will not treat chronic rejection (an eventuality with those who've had lung transplants) aggressively. Ask your center what they do for you if you are suspected of having Bronchiolitis Obliterans (chronic rejection). If they say "we just put you on Azithromycin 3 times a week), leave immediately and find yourself another center. It's unacceptable! Getting you off the table isn't enough. I promise when you get 10 years out, you will want more and more and more. Am I being selfish? Maybe.. since so many don't even get the chance of a second life, but I'm also being realistic and telling you how you will feel!

I am thankful for my 10 years (this November) with my new lobes. I am so beyond thankful to my mom and uncle for their donation (my mom's twice donation). But I want more time. I want to see my daughter grow up and graduate and go to college and get married and have children. I am selfish. I want time. I beg all of you to be as selfish as I am.

Lungapalooza 2011

Why the organization Lung Transplant Foundation means so much to me:

This organization means so much to me for many reasons. The biggest reason is that my doctor, who stepped down from the medical director's position of the lung transplant program at Duke to put his main focus on research, truly does care for his patients. He is pouring everything he has into finding ways to prolong the lives of his "older" transplant patients, i.e. those 5+ years out from transplant.

The Lung Transplant Foundation was started by a fellow Duke lung transplantee, and although the entire board of directors is somehow affiliated with Duke or the area, the organization's goal is to branch out to other medical facilities to fund research there that focuses on extending the lives of lung transplant patients. Research at ANY center can benefit lung transplant recipients from around the world!

Because the lungs are the only transplanted organ that is exposed to our outside environment, they are susceptible to pollutants in the air, and this is just one more reason the lungs tend to reject quicker than any other transplantable solid organ in the body. Eventually, those of us who've had lung transplants will get chronic rejection in our lungs (scarring from our body's defense system attacking the foreign organs). My doctor's research focuses mainly on finding treatments to slow this down, and hopefully one day find a cure for it. This foundation is the only one of its kind, and with the funds the organization hopes to receive through awareness/fundraising, they hope to expand it, so that many research hospitals throughout the states can have grants to further their work.

All of us who get transplants want those few extra years to spend with our families and live our lives. We are told from the beginning that a transplant isn't a cure, it's just an extension of life. We all think at the beginning that getting another 5 years to live will be satisfactory. Although, it is wonderful to have those extra years, after you get there, you want more. Of course I am to the point of one day hoping to see my grandchildren born. I hope with the LTF's fundraising, and with doctors like Scott Palmer, Scientific Director at Duke, I and so many others like me, can look forward to a normal life expectancy after lung transplant.

Please sponsor me in the Lungapalooza 2011: A Walk for Breath which benefits Lung Transplant Foundation. You can go here to sponsor me in the walk, and you can read all about Lung Transplant Foundation here.

Thank you for helping save the lives of me and of many of my closest friends! XO

Lungapalooza: A Walk For Breath

On September 19th, 2010, the inaugural Lungapalooza: A Walk for Breath was held at Duke University Medical Center. The Lungapalooza is an event to raise money for the Lung Transplant Foundation, a non-profit organization who's mission is "to promote and advance research in order to improve long-term outcomes among lung transplant recipients".

Below is a slide show put together by Amber, a dear friend who has had two double lung transplants, and who was a major facilitator in making the Lungapalooza happen. The photographs were mostly taken by me and by another amateur photographer who works for Duke University's Center for Living.

Enjoy!!!

Lungapalooza from Amber Wesemann on Vimeo.

Thankfulness

As my friend Lori and I sat down at a half-cleaned table in the Duke South cafeteria at Duke University Medical Center, we reflected on the two people sitting at the table behind us. We talked about how weird, amazing, and awesome it was. We talked about the rarity of it, and how there are only a handful of people in the world who could be sitting where we were and thinking about what we were thinking.

Here's the thing.... Lori's mom Sheryl gave her part of her lung when Lori was on the verge of death. Her dad was the other donor. Lori was the 2nd living-lobar transplant done at Duke University Medical Center (I was the 4th), a transplant center known for it's cutting edge medical care. Here I come a year later... dying to see someone who has had a transplant... there were no transplant chat rooms at that time, and I had never talked with anyone who had a lung transplant. A nurse introduces me to Lori, another transplant recipient who received the same type transplant I was about to receive. I was amazed.

Not only at her strength, beauty and courage, but at her nonchalant attitude about it all. I was so happy to meet her and later her sister Shannon, who was waiting on lungs the same time I was. Yes... two sisters with Cystic Fibrosis, one who was post-transplant, one who was pre.

So back to today. Lori and I sitting at one table so we could have "young" girl talk. Our moms, our donors, our life savers, sitting at the next to have adult conversation and talk about the difficulties of having children with chronic illnesses. Lori and I talked about it. We were in awe for just a minute that "we" had part of "them" inside of us.

Life is not only about giving, but also about appreciating the gifts you have been given. Thank you Mom. Thank you Uncle Joey (my other donor). Thank you Sheryl. Thank you Dave (Lori's dad). You are Lori's and my heroes. We love you!!!!

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!

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...

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...

She got the call!

UPDATE SATURDAY AFTERNOON: This was posted by Jeri's step-daughter Kristen today. "I just saw Jeri, she was doing good. Bekkie & I got to see her walk down the hall, it was pretty amazing considering she did it WITHOUT oxygen. We almost cried. But the doctors came in & said she was a "paper tiger", all her liver numbers are perfect & her lungs are awesome. She's doing really well, just in pain, but we just left because the pain service was in there trying to take the edge off. So, all is excellent. She looks amazing." I'm so happy for and proud of Jeri. Is this awesome news or what? Keep those thoughts and prayers coming!

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UPDATE SATURDAY MORNING: Again, I'm going to copy and paste from Jeri's caringbridge site. The last entry was written by her hubby at 7:30 pacific time last night. It sounds really good!!! Keep the prayers coming. Here is what Doug had to say..."She sat in a chair for over an hour earlier, next step walking around ICU after she rests for a couple of hours. She is still in tons of pain, mostly back pain caused by drain tubes. Dr Hoops says he would like to pull them tommorow. Also doing another bronch in the morning. All the staff in ICU are amazed how well Jeri looks and her recovery up to this point. She has a slight fever, hoping just post op fever.Nurse says probably just secreations in lungs, from not being fully inflated yet. Told Jeri to do her breathing exercise every half hour."

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UPDATE FRIDAY AFTERNOON: Here is the update from Jeri's caringbridge site... Doug wrote "Came back from ICU again, talked to two Lung Docs they said jeri's vitals are strong and stable. ICU nurse said they hope they can get her up and start walking this evening, all I can say is " WOW" so soon.I am so excited for her, her first steps without yukylngs in a very long time. She was a little more alert this time around." I'm SO stoked!

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UPDATE FRIDAY MORNING: Well, I didn't go to sleep until 4:00 am, and I've had my phone by my bed all night. I heard from Doug at 6:30 (eastern time) this morning and again just a few minutes ago. Everything seems to have gone well. Early this morning, he told me that the lungs were in, liver was in, and all they had to do was reconnect the bile duct and artery to the liver, and then close up incisions. Just now he told me that he is getting ready to go up to post-op to see what's going on, because he hasn't heard from the docs in awhile. The last he talked to the surgeons, they said that the organs were working beautifully!! YAY! I'll update when I know more!! Praise God!!!!!!

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UPDATE: The organs were good, so Jeri went into surgery about 4:00 pm pacific time. The surgery will probably take 10 to 15 hours! I'll update as I know more. Please keep those prayers coming.

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My dear friend Jeri just got the call! Yep, she's going in for a double lung and liver transplant!!! She was just listed on Monday!!!!! For those of you on CF2chat, you may remember her.

I am so excited. I had the wonderful privilege of meeting Jeri a couple of years ago when she and her husband Doug came to North Carolina to visit the race shops. They are big Nascar fans! This will be the first double lung/liver transplant that her center has done. Her lung transplant surgeon, who is now the head surgeon at her hospital in California, assisted my transplant surgeon at Duke during my surgery over 7 years ago. He is a really great surgeon, so I know she is in great hands!

Please keep Jeri in your thoughts and prayers today. Pray that the lungs and liver will be viable and in perfect shape to be transplanted, and pray for the wisdom of her surgeons. I will update as I hear more.

YAY Jeri!!!!

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!!

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!! :) 

Lori

Thank you to everyone who is praying for my friend Lori. For those of you who haven't read my previous posts about her, she is a 28 year old CFer, who had a lung transplant 9 years ago. She and I met a few months before my lung transplant at Duke.

Lori was diagnosed with chronic rejection last year. Despite being treated for it, her lung function continued to fall and fell pretty quickly from about November until January. They finally did a bronchoscopy (biopsy of the lungs) last week and found out that she has aspergillus pneumonia. Aspergillus is a fungus that a lot of CFers get. Getting it after a lung transplant though, proves to be harder to treat, because of our weakened immune system. When it actually turns into a pneumonia, it is very serious.

Lori started on an IV anti-fungal, but it doesn't seem to be helping yet. They did another bronchoscopy today. They will not find out the results of that bronch until Monday. I just received a text from her husband Jason saying that the bronch is over with and Lori is sleeping.

Please pray that whatever they find in the bronch, they will be able to treat. Pray that the anti-fungal will start working and she will be feeling a lot better soon. Also pray that her lung function comes back up to her normal range.

Lori is such an awesome girl. She loves life and embraces it! I cannot say enough good things about her. Her sister Shannon also has CF and had a lung transplant several months after me. Their parents both donated lobes to Lori. That family has been through a lot. Thanks so much for the prayers!

Living-related lobar transplant

In case you don't know what happens in this type of lung transplant, I'll explain it here, or you can go here for diagrams and a more medical explanation.

Everyone has 3 parts or lobes to their right lung and 2 lobes on the left. When a person receives a lobar transplant, both of their lungs are removed and replaced with lobes from 2 different donors. In my case, it was my mom and my uncle. They removed both of my lungs, and replaced them with my uncle's right lower lobe, and my mom's left lower lobe. Now, my uncle has only 2 lobes on his right side, and my mom has only 1 lobe on her left.

The surgeons turned the lobes sideways in order for them to fit into my chest cavity. So, I have only 2 lobes.. one on the right side and one on the left side. At first, they looked small on the chest xray, but it didn't take them long to expand (think of blowing up a balloon) and fill the space where my old lungs were. They don't grow, like a liver does, they just expand.

Because I received only lobes, I will never have a lung capacity like someone who received full lungs does, but I have 100% (or close to it) oxygen saturation.

The reason I had to receive lobes from a relative is because I developed anti-human antibodies when I was pregnant with Casey. Everyone has a small amount of these antibodies in their blood, but I had so many that it made me incompatible with 96% of the general population. Finding that 4% would have taken a long time, and at the time, I didn't have that long to live, so they started testing family members and friends too (just in case they might be a match), to see if I was compatible with them. My mom's brother Joel was a match, and my sister Renee was a match. After doing some testing on my sister, they found out she had mild asthma and couldn't be a donor. They didn't test my mom right away because she is 3" shorter than me. They prefer your donor to be at least the same height so that their lobe will be of adequate size. When I got so sick that they knew it wouldn't be long before I died, they decided to go ahead and test my mom. She was not only a match, but her lungs were large for her size (just like her kidney, which is huge.. haha).

My friends Lori and Katey both had lobar transplants too. If you would like to read my lung transplant story (I'll warn you, it's very long), you can go here.

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. :)