A week ago yesterday I had my total hip replacement. And everything has gone so well. *knock on wood* I’m used to some complication happening so it is definitely a breath of fresh air for everything to go as planned. And this hip is WAY better than the temporary hip (called a spacer) that I had for 6 weeks before my surgery. The spacer was very uncomfortable and often painful. I basically laid around for 6 weeks, relaxed and did a little PT. I’m a little sore from my hip replacement but overall, I don’t have pain. I’ve been working hard on physical therapy exercises & walking. Starting yesterday my dad & I will be walking up and down the driveway everyday. Walking is the best exercise because it strengthens my muscles and increases my endurance. I’m using a walker because it allows me not to walk with a limp and I don’t want to get into a bad habit of walking with a limp. I’ve been having issues with my hip since last March. And they got really bad in October, which is when we decided I, for sure, needed a hip replacement. I was introduced to Dr. Hawken and immediately felt like he was the right guy for the job. He has done an incredible job and is an amazing doctor. So THANK YOU Dr. Hawken!!
I recently officially resigned from Lidl. In the last 2 years I only worked for 5 months, 8-10 hours a week. Then I had the issues with my hip and decided I needed more time off. So, I technically haven’t really worked in 2 years but was technically employed and on payroll. I’ve been doing a lot of thinking recently about what I want to do with my life and I’m not sure if finance is what I want to do anymore. So, I didn’t want to string Lidl along if I wasn’t sure that I wanted to come back and they also wanted a definitive answer of when I would come back, which I did not have. We ended on VERY good terms and I definitely plan to keep in touch with my team. That company is AMAZING and has been so good to me. So if there is a Lidl store near you, SHOP THERE. They deserve to succeed here in the United States. [I recommend their wine, chocolate & cheese.] I also know for sure I want to live a little with my new lungs. I really haven’t been able to because of all the complications I have had. My summer is full of a lot of travel & I am so excited!
If I could do anything with my life it would be motivational speaking and starting a non-profit (if you have any experience in this, I’d love some help). I also plan to volunteer more with the CF Foundation and Donate Life/United Network for Organ Sharing.
Speaking of the CF Foundation, I was selected as an honoree for “DC’s Finest.” “The Cystic Fibrosis (CF) Foundation honors a select group of men and women from cities or regions across the country that are committed to professional growth through a guided fundraising and awareness campaign. These honorees exemplify strong leadership qualities, are active in their community and have excelled in their chosen professions. The honorees will enjoy many benefits throughout the campaign, primarily the knowledge that they are helping to better the lives of children and adults living with cystic fibrosis.” I have pledged to raise at least $2,500 dollars by August 22. If you’d like to contribute to my Finest Campaign please visit: https://metrodc.finestcff.org/jackieprice.
It is also CF Awareness month. So if you head on over to my Instagram page, I am sharing facts about CF every day. 🙂
Have you ever wondered how a lung transplant happens? My transplant surgeon answered some questions about the transplant process from beginning to end. This is a general overview & is not the exact process taken for all transplants. This process may also vary depending on the hospital where the transplant is taking place. He explained this process in an understandable way. Whether you have had a lung transplant or not, I think you will find it interesting.
The transplant pulmonologist and transplant coordinator (who is usually a nurse practitioner or physician assistant) receive a call from the organ procurement organization (an organization that evaluates and procures deceased-donor organs for transplantation) regarding an offer for an organ. They then determine whether or not the donor organs are sufficient for donation. Some organs may be viable, while others may not be. The transplant surgeon then receives a call from the pulmonologist and coordinator with basic information regarding the donor. The surgeon will accept, decline, or ask for additional testing to be done. If they accept, they proceed with the transplant. The procurement surgeon (a transplant surgeon can do procurement and the actual procedure but they never do both for the same patient) drives or flies with two operating room nurses to the other hospital to bring the organ back to the hospital where the surgery will take place. There are four operating room nurses for the recipient and two operating room nurses for the donor. Cardiac perfusion runs the heart/lung machine if it is used during the operation and they help initiate ECMO support post-operatively, if necessary.
The process of taking out old lungs is relatively straight-forward but depends on the recipient’s underlying condition. Cystic fibrosis lungs and sarcoidosis lungs are generally very difficult to remove due to chronic infection and inflammation. The lungs are quite literally fused to the walls of the chest cavity and have to be peeled away. (This was the cause for excess bleeding post transplant in my case.) Conversely, COPD, chronic obstructive pulmonary disease, and PPH, primary pulmonary hypertension, are generally quite easy. They dissect out the pulmonary artery (the artery carrying blood from the right ventricle of the heart to the lungs for oxygenation), the pulmonary veins (the veins that transfer oxygenated blood from the lungs to the heart; there are two or three per side) and the bronchus (any of the major air passages of the lungs that diverge from the windpipe). If they are doing a double lung transplant, this process is done for both sides through a clamshell incision (shaped like a curved ‘W”, and is typically cut just below the breasts). If a single lung transplant is being done then it is through a thoracotomy (incision on the side of the chest towards the back).
My surgeon does most of his single lung transplants and all of his double lung transplants on bypass support. There are many reasons for this – his feeling is that it minimizes blood loss, keeps the heart stable while they’re working, and lets him take both lungs out at the same time during a double lung transplant. The alternative is bilateral sequential lung transplant off of bypass but this means that at some point, the new lung and one of the old lungs is in the body at the same time. This leads to potential contamination of the new lung. Not many people do double lung transplants this way in the modern era.
Time is of the essence, in two senses. One, they try to time their explant procedure to coincide with the arrival of the donor lungs. They don’t want a patient sitting on bypass for hours waiting for an organ. Conversely, they also don’t want the donor lungs to arrive before they are ready to put them in…which leads to the second component. In general, the lungs need to be put in the recipient within 6 hours from the time they were removed from the donor. This is why donor organs are allocated on a regional basis. It would not be possible for a recipient in California to receive donor lungs from Virginia. There are centers that push this number up to 7 or 8 hours but the majority of centers look at 6 hours as the maximal tolerable ischemic time (a restriction in blood supply to tissues, causing a shortage of oxygen and glucose needed to keep tissue alive).
The most critical point in the surgery is the airway anastomosis (connection between the recipients airways and the donor lung airways). Blood vessels bleed so if there is a problem its pretty obvious. The bronchial anastomoses do not – if there is a technical error, they don’t know until sometimes weeks later.New lungs are put in by matching the bronchus to bronchus, pulmonary vein to pulmonary vein and pulmonary artery to pulmonary artery. They are all matched up and sewn end-to-end.
A dry run is when it is decided that the donated organ is not viable. This happens 25-30% of the time in lung transplants and less than 10% of the time in heart transplants.
My surgeon’s longest double lung transplant was 8 hours and shortest single lung transplant was less than 2 hours. This is the amount of time he performs the actual transplant with other medical professionals assuming roles in the operating room before and after.
The advances of modern medicine are quite remarkable. To think that one person can donate an organ to another person is just incredible. Seventy-five years ago, no one would believe heart & lung transplants would be happening. So far in 2017, my hospital has performed twenty-some lung transplants.
Let me tell you about “my team” while I’m in the hospital.
Fellows and medical students
Well, of course there’s the transplant pulmonologist who leads the team and monitors my vital numbers related to lung function and orders tests like CT scans and blood work. The transplant pulmonologist works directly with my infectious disease doctor who looks at the buggies that are growing and decides what antibiotics and dosages will best kill those suckers. They order different types of lab work to check for infection that might be in my blood or other places. The pharmacist who I know well isn’t one of those pharmacists you’re thinking of like when you go pick up a prescription at the drug store. He works with the team to determine which course of medications are best for compatibility and avoiding bad drug interactions. The crazy thing is, the doctors ask him questions about compatibility and looking at him, you can tell his mind is running through his pharmacy reference encyclopedia and out pops an answer. Can’t forget about the nephrologist. While all this is going on, he might have a thing or two to say about the impact on my kidneys. He knows the priorities from being on the team and helps monitor when my kidneys have to take a hit. The transplant drugs are hard on the kidneys so he is an important part of my team.
The nurse practitioners are like glue that holds everything together. They are there to answer any questions I might have and to take information back to the team. I can bother them or complain and they always help and encourage me. The dietician makes sure I’m bringing in enough calories to fight off any infections. She reviews with me foods that impact blood sugar, potassium and a bunch more. The social worker makes sure that my spirits are high and manages any paperwork. She’s aways easy to chat with. The fellows and medical students come along with the team and add to our conversations. I always want to know where they went to school and how much longer they have in their training. My team has great camaraderie. It’s easy to tell how well they get along, how much they enjoy their work, and how they are dedicated to each of their specialities. I have a lot of faith in them, fun with them, and am thankful for them!
“Hello” I answered the phone. Recognizing the number as one from Fairfax Hospital. It was the social worker. It was weird that she was calling but I had my one year transplant clinic appointment coming up & I assumed she wanted to prepare me for some things we would discuss. “I have a letter for you from your donor’s mother. Would you like me to email it to you?” I was in shock, I hadn’t sent my letter yet. It’s not often that a recipient receives any response from their donor’s family and it’s even more rare that the donor’s family writes first. The only word that came out of mouth was “Yea.” With shaking hands, I immediately went to my email and started to read.
It is with both sadness and joy that I write you this letter. My daughter, my heart passed way 12 months ago, on June 19, 2016.”
Tears started to run down my face. I continued to read about Samantha. I felt sadness that she had passed away and sadness for the grief her family had endured over the past year. My heart hurt for them. But I was grateful that she left me the gift of life through a new pair of lungs. It was a while before the tears would stop. I immediately called my mom. She thought something bad had happened because I was crying so hard. “I received a letter from my donor’s mom,” I cried into the phone. She came home right away and I read her the letter. She too cried with me. I called my brother, Byron, who lives in Boston. After I read the letter all he could say was, “Wow” and I could hear the tears in his voice. I read that letter many times that day & I still read it often today.
I was planning to hand write my letter to her family and send it after the 4th of July but decided that, since I had received one first, I wanted to send mine out right away. I changed a few things & sent my letter only hours after receiving the letter from Angela. And thankfully I did because the Donate Life Donor Family Advocate was going out of town for the next week & would not have been available to send the letter on to Angela, had I sent it after she left.
One thing Angela & I wrote in our letters was that we wanted to meet each other. I was excited she wrote that she wanted to meet because this is something I always wanted. To meet my donor’s family and thank them in person. From the moment I found out I had a lung transplant, my mind immediately went to my donor and since that day I’ve thought about them every single day. Who were they? What did they like to do? I even wondered what caused their death. I now knew that my donor’s name was Samantha, some things she enjoyed and I would later find out more. I was anxious to plan our meeting. We decided on September 9th because my brother was going to Spain for 3 weeks in August and of course we wanted him to be included in the meeting. We decided not to communicate before then so it was two months before I would get to talk with Angela again.
We pulled up to the complex where the Donate Life office was, our planned meeting spot. Emotions I have never felt before started to flood my body. I was nervous, excited and even scared all at the same time. “What would they think of me?” “Will I say something stupid?” Thoughts similar to those you would have before a first date started to run through my mind. This was WAY more important than a first date, though. Then I started to think, “Am I ready for this?” Immediately followed by, “Of course you’re ready for this.” Butterflies started to go crazy in my stomach.
We waited outside until we got the call to head up the elevator. We walked through the glass doors of the office. There was candy in a small bowl near the coffee counter – I ate two laffy taffy’s as I prepared myself for the meeting. We were told it was time. I walked down the hallway and into the arms of Angela, Samantha’s mom. We both cried into each others shoulders. Neither of us had words for the moment, just tears. Angela had told me that for the first time in a year she felt Samantha’s presence. That meant so much to me, that I could give Angela something so special. I let Angela listen to me breathe…hear Samantha breathe for me. Most importantly, I let Angela talk to me about Samantha. The donor family meeting was so important and special to me. The day was all about Samantha, though, & the great gift she left behind.
After our initial meeting, I invited Angela and the rest of her family back to my parent’s house for some BBQ. I had been really nervous to ask for the fear that they would say no. They accepted the invite! We spent the next 4 hours hanging out. We sat out on the screened-in porch all night. I learned more about Samantha and they learned more about me. We shared photos and stories. Samantha’s youngest sister, Allison, is only 16 years old and at first she was quiet. But as the night went on I felt her becoming increasingly more comfortable and talkative – it was so special for her to open up to me. I also got to meet Samantha’s sweet sweet dog named Benelli Rose. I am usually afraid of bigger dogs, but she was so sweet, gentle & kind!
Towards the end of the evening, I stood in the hallway of my parents house with Sara (Samantha’s younger sister) and she said that she felt so comfortable around me. Like we had know each other for more than just hours. I felt the same way; it was an instant bond. A bond that we will have forever.
The night flew by and some parts are even a blur. There is a saying about not remembering everything that someone says, but you will remember how they made you feel. I don’t remember everything we talked about that night but I do remember how I felt. I was excited and happy. I remember laughing & smiling a lot. I also remember feeling sad & holding back tears at times. But most of all, I remember how comfortable I felt all evening.
Angela, Ray, Sara & Allison & I have kept in touch. We met in Richmond last weekend and it was so nice to see them again. I hope to find my way down to Wilmington, NC one day to meet the rest of Samantha’s family (especially her grandmother) and her friends. I want to see where she grew up and enjoy some of the same places Samantha enjoyed.
Meeting Samantha’s family has been the greatest experience of my life. I encourage all recipients to write a letter to their donor’s family. Even if you don’t receive a response, letting them know how thankful you are is so important. And it could just mean the world to your donor’s family. If your the donor’s family, I encourage you to be open about writing a letter to the recipient and the possibility of meeting them. Angela has told me that she felt angry about Samantha’s death and when she received my letter she felt peace. Knowing that I gave her that, was so so special to me. My decision to write her and meet was definitely the right one.
If you’d like to read my letter to Samantha’s family, click here. To read Angela’s full letter to me, click here.
A few weekends ago some friends & I spent a weekend in Old Fields, West Virginia. It was a weekend of completely disconnecting and having some good old fashioned F-U-N. There was no internet and absolutely no cell service. It is important to have weekends like this where we don’t bother with our phones and we connect with those around us in a different way. We arrived at the mountain house around 11:30am on Saturday morning after a beautiful drive through small towns and a lot of windy mountain roads. Some people had already arrived Friday night, so we were greeted by friends.
The goal of the weekend was also to raise money for charity. We auctioned off the beds on the property. If you didn’t win a bed, you had to camp out in a tent. We had “beer bitches”…Shawn’s younger sister and her friend would get beers (or anything you wanted), at a price. We played drinking games & for each person who participated, the McDonough’s would donate $5. I’m thankful to them for hosting the weekend!
We started the day shooting bow & arrows and an assortment of guns. One of the rules of the mountain house is that you cannot shoot anything after any drinking which is why this took place first. Let me tell you, shooting a bow & arrow is a lot harder than it looks. I couldn’t get the arrow anywhere close to the target! There was a bb gun, shotgun and handgun. The shotgun & handgun were so loud, ear protection was extra necessary! I was surprisingly good at shooting the handgun and hit the target both times I fired, pow pow.
The day continued as the ladies hung around the picnic area, chatting and listening to music. We gossiped about the ins & outs of our lives and caught up with each other. It is not every weekend that we are all together so we really cherish these times. The guys played games in the yard and goofed around, what guys do. We had hot dogs and chips with helluva good dip for lunch, food I have craved a lot after my transplant.
We played dizzy bat…you chug a beer and then spin around for ten seconds with your head on the top of bat, while the other end of the bat is on the ground. You’re extremely dizzy after and try to find enough coordination to hit a ball. Most people fall straight to the ground! With my hip problems, I had an excuse to watch and laugh at everyone’s tries.
We brought out the bier stick…It is filled with beer and while you press the end of the stick against the wall, beer is shot into your mouth. A friend, Kevin, challenged people to use the bier stick and he would specify a donation amount for each time. We sang karaoke, ate hamburgers for dinner, danced and laughed some more. We ended the evening with a bon fire. Because of my transplant I cannot be near burning wood but I wanted to be able to enjoy the bonfire & guitar sing-a-longs. So I sat up wind and wore a mask. I didn’t spend too much time by the fire.
The sky was so clear, it felt like you could see every star in the galaxy. I laid with my back on a bail of hay and looked up. The weekend was coming to an end but it had been such a fun time. My mind immediately went to my donor, Samantha. How grateful I was to her for giving me a second chance and for my ability to spend this weekend in the mountains with great friends. I thought how amazing and how precious life truly is. At that moment, I knew she was looking down on me, smiling. And I was looking to her, smiling back.
We ended up raising $1,066! Here is a video I made from the weekend, enjoy!
On Monday I shared with you the letter I received from my donor, Samantha’s, mom. Today, I share the letter I wrote to her. I had wanted to hand write my letter (I had already typed it up) and was planning to snail mail it after the 4th of July holiday when I received Angela’s. I decided to reply that same day via e-mail because I was so anxious to get the letter to her. Next week I will share with you my personal experience meeting Samantha’s family for the first time. My letter to Angela:
I’ve imagined writing this letter to you ever since I woke up and found out I had been transplanted. I’ve been curious about who my donor was, the type of person they were and their interests. I’ve thought of what I would say and the words I would use to thank them and their family because a simple “Thank You” is not enough. I’ve had my letter drafted, prepared to send after the 4th of July holiday, when I received yours. I had always wondered if I would hear back from my donors family. One of my biggest fears about writing is that I wouldn’t receive a reply but decided I had to write because they needed to know how their loved one saved me and how grateful I am.
Thank you for telling me about Samantha, I can only imagine how lovely of a girl she was.
Samantha saved my life on June 21, 2016. I received both of her lungs.
I’m 25 years old and was born with a genetic disease called Cystic Fibrosis that causes sticky mucus to build up in the lungs, causing frequent lung infections. These infections scar the lungs and cause a decline in lung function. I have lived my life as normal as possible despite my disease…attending college, having fun with friends and starting a career. There have been plenty of large speed bumps along the way but I just moved over them and kept going. I knew transplant was going to be in my future but was not expecting it for a few more years.
My lungs took a rapid and unexpected turn for the worse in June 2016. I was placed in a medically induced coma on June 13, 2016 with the hope my lungs could rest and work again on their own. I made the doctor promise me that I would wake up again. My lungs completely failed me days later and I was placed on an external heart and lung machine (ECMO), doing all the work for my lungs. My doctors decided the only hope that I would ever wake up again was a transplant. And so, with the help of my parents and older brother, they listed me for a double lung transplant. Without Samantha’s lungs, multiple nurses told me, I would not have made it another night. I was very very sick.
I won’t say this last year has been perfect, I was in the hospital for 4.5 months after my transplant and I had to build the strength to do everyday life things again like walk and hold a fork to eat. But I have made such great strides and am going to the gym regularly, something I despised before transplant because I would become out of breath. I am back at work part time after 11 months off – it is such a great feeling to be contributing to something. I am hanging out with my family & friends who mean so much to me. I have travel plans for this year to visit my brother, Byron, in Boston and my aunt in Colorado. I enjoy doing art and have a new found interest in taking pictures/videos on my GoPro and creating movies. I have Samantha to thank for this. I want you to know that my body is accepting Samantha’s lungs and I have not had any signs of rejection. Her lungs continue to breathe for me.
A day hasn’t gone by where I haven’t thought about my donor and their family. Now, I finally have a name. I know every day I have here is because of Samantha. I will know that for the rest of my days. I call her my angel looking over me everyday.
I want you to know the type of person I am. I could sit here and write what I think of myself but I wanted you to know from an outside perspective. So I’ve asked a couple of my closest friends to write honestly about me. Here is what they said:
“Jackie makes LOVING life look effortless – because for her it really is. She’s a person who has a true lust for life and all the adventures it brings. She’s the person who won’t give up when there are obstacles in her way or the odds are against her. She’s the person who will, despite everything, find something, some-reason to love life and honestly, she’s contagious in that way.”
“Jackie’s thirst for life is far greater than anyone I’ve ever known. In the midst of her constant hardships with CF, her optimism shines through as she continues to feel immensely grateful for all of life’s gifts. Having had the experience to attend a best friend reunion vacation with Jackie recently brought an insane surprise amount of joy to all of us. The miracle that she is with us today is one we are forever thankful for. I can’t wait to see what life accomplishments are in store for Jackie. She is an absolute warrior, and her strength is inspiring to all. The quote ‘keep on keeping on’ is one she lives by. And she does so with a huge heart, and a smile on her face.”
“I met Jackie when I was 12 years old when she was randomly assigned to my soccer team. At first I thought who is this wild child. She had so much energy it was almost annoying. I remember the day we became friends. We were hosting a soccer party at my house and all he girls on the team were downstairs while the parents were upstairs, with the exception of Jackie. It felt wrong so I went upstairs to talk to her and started a friendship that grew into family. Jackie is my only friend brave enough to tell me like it is and kind enough to want the best for me the same way my parents do. She will tell me if a boyfriend is no good, demand I ask for a raise at work because she knows my worth and refuses to ever let me settle. People like Jackie help the ordinary see all the extra out there in the world. She has taught me to value myself and live everyday to the fullest. She may be a control freak, but its only because she knows exactly what she wants out of life and isn’t afraid to go after it.”
I am happy that you wrote you would like to meet, because I also would like to meet you and your family. I want to hear more stories about Samantha and what she liked to do. More about her big heart and what seemed like amazingly kind soul. I am going to ask that they release my personal email address to you so we can continue to communicate that way. Thank you so much for writing Angela.
I want to share with you my experience meeting my donor, Samantha’s, family. But first I want to share with you the letter I received from Samantha’s mom & later in the week I will share with you the letter I wrote back to Angela. With Angela’s permission, below is the letter I received on June 30, 2017, 1 year and 9 days after my double lung transplant.
It is with both sadness and joy that I write you this letter. My daughter, my heart passed away 12 months ago, on June 19, 2016. She was pronounced and went home to be with God. 12 months ago you were given the chance to live again, and for that I am so very proud of my daughter Samantha.
Samantha grew up in Wilmington, NC. She was 20 years old when she died. She was a bright girl, and loved everyone. She met no stranger, even though I always taught her “stranger danger” LOL, she didn’t listen. She didn’t care if you were rich or poor, in her eyes everyone was the same. In those short 20 years of Samantha’s life she grew up surrounded by friends, family and her beautiful and sweet dog Benelli Rose (now my Grand Dog). Samantha loved the beach and that is where she spent a lot of her free time.
Samantha was a daughter, Granddaughter, sister, friend, and soon to be Aunt to my beautiful Grandson Brayden. She couldn’t wait for him to be born. Samantha was not a shy girl. She knew her faults and she accepted her imperfections. She laughed at herself and took advantage of opportunities to grow every day. She was not perfect and she was the first to admit it.
The day my daughter died a piece of me went with her. I have spent every second, minute and hour thinking of her. I think about how she will never have the chance to marry, or be a mother herself. I wonder how her life would have turned out, would she have been a doctor, veterinarian, teacher, or a stay at home mom. As parents we expect to die before our children, so when you have to bury one of them it’s like your burying yourself. I have somewhat come to grips that it’s time for me to move on, although it will be easier said than done, but I have two other girls, my Grandson and my husband to live for.
Since Samantha’s passing you have crossed my mind a lot. Samantha was always such a giving person, and her desire to be an organ donor was but one example of her selflessness attitude towards life. I guess I have some peace knowing a piece of her still lives on in five people that I hope she was able to save. The thought of my daughter’s heart continuing to pump and her lungs continuing to breathe is so heartwarming to me.
I guess I am going to end with the hope that you will allow me and my family to meet with you. I would like to tell you more about her and how big her heart was. Maybe it’s too much to ask, but I hope you will allow me this last chance to hear her breathe for someone else, for you.
My first health update on my blog. Where do I even begin? A lot has been going on!
Let me start with my lungs. My last pulmonary function test was 60%, my highest since transplant and my highest since before college! My x-ray and CT scans have all looked clear in recent months which means there aren’t any spots of pneumonia (bacteria causing mucus to stay trapped) which is also a really good sign. I’m hoping I can get my lung function above 65% with some good old fashioned exercise. I haven’t been doing a ton of exercise recently because of my hip…but my aunt and my friend Gabby’s mom have graciously donated me an elliptical and seated bike (both low impact and not hard on the joints). They will be put to good use and I am oh so grateful!! If I had to give my lungs a grade, I’d give them a B. The reason is there is always room for improvement & for the fact that I have been coughing up some nasty looking stuff every now and then recently. We believe this sputum has been coming as drainage from my sinuses and not necessarily my lungs. Which is actually a good thing, even though it’s not great.
This leads me to an update about my sinuses. A recent nasal swab showed that my sinus boogies are growing a couple bacterias and fungus. Bleh!! My sinuses have been a huge issue my entire life. It comes with CF. A little anatomy…The sinuses are considered part of the upper respiratory track which leads to the lower respiratory track…aka the lungs. This makes it especially important to keep them free from bacteria to avoid any possible drainage infecting my new air bags. To try to clear out the bacteria & fungus I will start IV antibiotics, change up the anti-fungal I am on, and have a sinus surgery next week to give them a good old fashioned “power washing”. We’re hoping this will get rid of all those bad buggies! This is usually an outpatient surgery but because of my lung transplant, I will spend one night in the hospital for monitoring.
My kidneys are stable. I am currently listed for a kidney transplant but the process is much different than a lung transplant and takes much much longer. The average wait time for a kidney is about 4 years!! It’s very complicated but I’ll try to explain the best I can…My current kidneys are working just enough to prevent fluid build up and remove any extra minerals, like potassium (too much in your body can actually cause dangerous heart rhythms) and phosphorus, from my body. If I stay very well hydrated my creatinine level (a reliable indicator of kidney function) will stay around 1.8-2 (normal level is between 0.5-1.1). I regularly see a team of nephrologists (kidney doctors) who work together with my lung transplant team to ensure my kidneys do not endure any additional damage and to try to keep them functioning for as long as possible. That is what I love about INOVA Fairfax Hospital, teams of all different types of doctors work together for their patients. And they are all friends, you can tell from the way they interact with each other.
Moving down to my hip. To be blunt, it’s not good. This was probably the toughest pill for me to swallow when I found out how bad it actually is. I have avascular necrosis (AVN) in both my hips but far worse in my left. AVN is essentially the death of bone caused by a lack of blood supply and is a possible side effect of prednisone. It causes a lot of pain at times & a limp when I walk. I have transplant friends who are 5+ years out and have never gotten this…So how did it happen? My doctors believe that the extremely high doses of prednisone I had last year (to save my life) combined with not being able to move for months caused the AVN to develop quickly. Unfortunately, there is no cure for this and my hip will need to be replaced. Timing is crucial though. The orthopedic surgeon wants me to be as far out from transplant as possible. But if I we wait too long there is a chance the ball of my hip will collapse in on itself which causes a lot of problems with the muscles and makes the replacement more difficult. Not to mention a lot more pain! So, my doctors & I decided we would aim for January. This will allow me enough recovery time to be able to enjoy my summer with friends but also far enough out from transplant. And time to zap the bugs in my nose! We do not want any type of infection having any opportunity to make it’s way into my new hip.
I think that about covers it. This all may sound a lot worse than it is but to me, if my lungs are healthy and I am breathing, then I am one happy girl!! Yesterday I spent the day in DC with my friend Amber. We had such a fun time finding amazing wall murals and eating some great food. We decided to try out a new shared biking system called MoBike. The nice thing about these bikes is that they can be parked anywhere, you don’t have to find a station to dock it once you’re done. Highly recommend. According to the MoBike app we rode for about 2 hours and covered about 13 miles. I was breathing pretty hard up the inclines and had to walk my bike some, but I made it! That should give you an idea as to how my lungs are doing and my energy level. Both good!!
I hope everyone reading this has an amazing rest of their week! Stay healthy & happy, my friends. 🙂
Looking back now, I realize how much I pushed myself. “I am doing well!” was always the answer I gave people when they asked how I was, as if to convince myself. My lung function was 28% and in reality, every day was a struggle.
I had breathing techniques just to help me get through putting away my laundry. Making my bed was a chore that took well over the normal time that should be taken to make a bed because of the breaks I took at each corner. I was the person everyone hated in the elevator because I took it up only one level…I became very accustomed to the dirty looks after pressing 2 from level 1. I would call an Uber to take me two blocks to the next restaurant after my friends & I had brunched in Washington, D.C. “I have a lung disease,” I would tell drivers so they didn’t think I was just lazy. My friends would give me piggy back rides up the stairs to a D.C. rooftop. Walking anywhere was not an option. I would see my friends briskly walk in front of me and wonder how nice it must be to walk so fast, so easily. I tried to keep up but I was falling further and further behind. I never wanted to miss a wedding, country concert, or brunch. So I went and I had an amazing time. I wanted to work, so I pushed myself. I loved my job (still at the same job working part time!). To me, living life was the only option and I would give everything I had to do just that.
As June approached, my mom was coming over at least twice a week to bring groceries and help clean up. I didn’t have the energy to go to work every day, hang out with my friends, and do adult things like cook and clean. So I chose work and my friends to focus my energy on…those were the fun things, right? And all of my energy, it took.
My transplant journey may have been unplanned at the time and may not have been like others with cystic fibrosis. I wasn’t ever on oxygen and I never wondered each day if I’d get a call for lungs, I wasn’t awake to do that. But I know what it’s like not to be able to breathe. To have to spend hours a day doing treatments just to function. What it’s like to watch friends participate in kickball or pick up soccer leagues and wish to do the same. I know what it’s like to experience that cough attack in a public place while people watch & wonder what is wrong. To miss birthdays and get togethers from being in the hospital with a lung infection. I’ve experienced that person who says, “I’ve got that too,” after a cough spell and the only thing to do is smile and awkwardly laugh. I know what it’s like to try to catch your breath, I tried for 24 years.
Today I can breathe because of organ donation. Because of my donor, Samantha. My lungs no longer have cystic fibrosis (the rest of my body still does…I will do another post to explain this). I can do things without worrying if I’ll be able to catch my breath. Avoiding walking a block is in my rear view and I’m not looking back. I no longer constantly cough (while I do miss my 6 pack!) and taking the stairs is possible. I can exercise for more than mere minutes without feeling completely out of breath. I’ve walked the streets of new cities, visiting family and friends. I enjoy the outdoors now and plan to more spend more time there, biking & walking & exploring. There is so much I can do and so much I have done and so much that I plan to do. The possibilities are endless. My life has changed because of organ donation. Living is still the only option I give myself today. But living is a lot easier when breathing is easy too.
I lay in my hospital bed in room 224 in the CVICU at Fairfax Hospital. I turn my head to the left and see a young blonde woman pass my room. “She must have cystic fibrosis,” I think. There are not many people under 50 in the cardiovascular ICU, or any pulmonary floor for that matter. And when there are, my first thought is always CF. She has a trac in her neck with a tube tracing back to a ventilator pushed by a respiratory therapist. My next thought, “She must also have had a lung transplant.” Then she walks around again, and again, and again. Each time she passes, before I knew it, she is back again. I look to my mom & tears start to run down the side of my face. “I want to be her. I want to be able to walk the halls with my ventilator,” I mouth, unable to speak because of intubation. I want to be walking so badly. I want to be able to move so badly. At that moment, I want to be anywhere except where I am. “You will be, Jackie. I promise, you will be,” my mom responds, holding back tears herself. Anya passes my room day after day, multiple times a day. Dr. Brown comes in during her usual rounds and I write to her in a notebook, “I want to be her. The blonde woman who walks past my room.” Unable to say much, Dr. Brown simply replies, “She is on a different journey than you.” But she takes note.
Later that afternoon, a woman from the hallway hands my mom a note. The corner has been ripped from a sheet of paper, on it said www.anyasstory.com. Curious, I immediately ask my mom to get my phone. With hands barely strong enough to hold it, I go to the web address. I read Anya’s story. I find out that she had a transplant in 2008. That she had won 2nd place at the transplant olympic games in the 100m dash. She had an amazing husband and an extremely supportive family. All of this she shares with us, people she doesn’t even know. I also find out that her body rejected the first set of lungs she received and she went through a second transplant in 2014. So I am right, she did have a transplant, but that’s not why she is in the hospital this time. Her body is also rejecting the 2nd set of lungs and she has developed an infection. Some people would feel defeated. But from what I witness, not Anya. I’d never met her and I could tell she was more determined than ever just by the way she passes my hospital room every day. One day, on the ventilator, she walks a mile around the CVICU. That is over 15 laps. Amazing.
Anya’s mom comes by my room just to check in and see how I am doing. This becomes a regular occurrence along with Anya’s walks around the CVICU & past my room. Except now Anya smiles & waves. We are friends. We could never actually meet in person because of cystic fibrosis and because of the bugs we each might cary. But we are friends. People with CF, they just get each other. It’s almost like an immediate bond is made when you find out someone has CF.
That summer I learned a lot watching Anya walk past my room. I learned that everyone is on their own journey. No two people are the same. I learned that it wouldn’t be easy, but I could be walking the halls on my ventilator. And I would be soon. I learned that someone could have the worst possible thing happen to them post transplant, but still have sheer determination. She inspired me before I ever even said “Hi” to her. I wanted to work hard and get through my tough time because I saw Anya walk past my hospital room, fighting CF and fighting rejection. In my mind that’s what inspiration is, someone making you want to be better or do something more. Anya did just that.
Anya lost her battle with CF on September 7, 2017. Anya reminded me of something important. You don’t know what someone is experiencing just from watching them walk the halls past your room. They may appear the strongest of person, but are fighting a battle of their own. Anya also gave me hope. Hope that I would make it through and hope that I would be walking the halls, just like her. Anya and I may not have been close friends, but one thing I know is that I will never forget watching her walk past my room every day.
People with CF, they should never be forgotten for they are some of the strongest and hardest fighters. We know how precious every breath truly is. The ones who lost their lives fighting to breathe should be a reminder that a cure needs to be found. That people with CF & lung transplant shouldn’t be fearful of the word “rejection” because that word shouldn’t even exist in our world. The CF Foundation is leading the fight against CF and recently, CF transplants and rejection. To find out more and donate in honor of Anya Crum Huie please visit http://www.cff.org.