Category: transplant

  • Jan ’26

    The holidays have come and gone and once again I was blessed with being with my family another year. I can tell however, that my illness is starting to take a toll on me, physically, emotionally and spiritually. Things that I once used to look forward to and get so much pleasure out of planning for have now become harder to manage and seemed to have lost their joy. I’m sure some of this is just from age and my kids are now all adults and none of them live with us anymore but some of it is because it takes effort. And more than just physical effort. There are days that I’m just “spent” and I feel like I have nothing left to give.

    Jan 8th – my next Cleveland Clinic appointment day. I managed to loose the weight I needed, yes, even over the holidays! I told you they aren’t the same. I’m anticipating Dr. L will be presenting my case to the transplant board this time since I lost the weight but I have been able to function a little bit better at home since starting all of that pulmonary hypertension medication. However, Dr. G also said that she never recommends someone postpone being listed just because the medicine is working so if he says I’m ready I guess it’s a go. BUT, to my surprise, he doesn’t think I’m ready. He seems quite pleased with the difference he sees in me from our August and October visits to today’s visit. Come back in April, try to loose a little more weight because it makes recovery easier and call if anything changes drastically.

    Jan 12 – It has gotten colder so I had retrieved my longer winter coat from our “old home” on the 9th. Luckily for me I found the long-lost pulse oximeter that I wear on my thumb in it’s pocket and had charged it over the weekend. I decided I’m gonna wear it for a few days to see how I’m doing since it’s been so long since I’ve had it available and I know I’ve been coughing a lot just getting to and from my car over the last few months. This particular morning by the time I got to my car the pulse ox was vibrating, I was 79% with my oxygen concentrator at the highest setting. I quickly try to snap a picture of it to show my husband. I’ve been telling him for months that I thought I needed to think about going on a medical leave because I didn’t think I was getting enough oxygen but I also “knew” that Dr. L was gonna put me on the list when I saw him. And that was going to be my excuse to take my leave. Because I was just having a hard time making the decision for myself. Well, I sent that picture to B and his instant response was “time to go on leave”. Thank you. Yes, he finally understood. And don’t get me wrong, I’m not blaming B in any way. I just felt like I needed his backing and now I finally had it. After speaking with my manager that day I put in for my FMLA request that night to start that coming Thursday. I wanted my last day of work to be on Wednesday when my middle one, K, was already off. It was already going to be a difficult day for me and I didn’t want to make it any harder. Wednesday came and honestly I had such a peace about me that day. I think I knew I made the right decision for myself, finally. And I did it just in time. Thursday hit and with it came sub-zero temperatures and they stayed for a couple of weeks. I wouldn’t have been able to go to work in those conditions anyways. So I send up a prayer of thanksgiving every day for a while because I know that wasn’t MY timing.

    But unfortunately because of those cold temperatures I didn’t get over to see my dad that weekend like we had discussed the Sunday prior. We had a good visit on the 11th and that would be my last memory of him, him waving to me as I closed the door. He passed away on the 19th, in his bed, just like my mom. And I know this is going to sound cliche but I knew it was going to happen. I was awakened around 2 am that morning and I knew he was going to pass. I was expecting the phone call around 2:30pm, just enough time for my sister B to get to his house from work. I had forgotten that it was a holiday for schools, MLK day, but that didn’t stop the phone from ringing. It was around 3PM. I remember I even told her that I was expecting her call because God told me today was the day. My world crashed AGAIN. I grieved for my own selfish reasons but my soul was content because he was no longer in pain, he was no longer lonely, he was no longer heart-broken.

    In the week after my Dad passed I was awakened every night around the same time, between 2-3 am. You see, I was arguing with God. He wanted me to do something and I wasn’t comfortable doing it. I would get up and go sit in the living room and talk, argue and plead, sometimes out loud. And I resisted until about 5 minutes before my father’s funeral began. I prayed to God to give me the strength, courage and words to do His will. You see, my Dad wanted a particular song played at his funeral and God wanted me to make sure people heard and understood my father’s last message. My father had told my SIL, M that he wanted “Far Side Banks of Jordan” played. Not your typical funeral song. And that was the point. Most people wouldn’t know that song and I was to make sure they didn’t just listen and say “oh, that was nice”. NO, there was a message there for someone. Someone needed to know what Dad was telling them. I won’t write the lyrics here but the Jordan is the River Jordan, mentioned in the Bible over 175 times. In this particular song, it’s meant as the entry into the final promised land and Dad wanted us to know that he will be waiting there to greet us when we get there. My Dad spent the last 40 years of his life telling people about the Trinity, he planted seeds in every one he met and he wanted nothing more than to know that his children and grandchildren knew Christ before he died. Well, that didn’t happen and I think this was his last plea.

    I didn’t have a speech planned out, and I’m not a public speaker by any means, just speaking to a small group makes my face turn bright red. All I had was the lyrics to the song in a screenshot on my phone and a quick Biblical description of the symbolism of the River Jordan that I brought up right before going to the microphone. I honestly don’t even know what I said because the words just flowed. They came from God and I was just the vessel. But I do know that He touched every heart in the place. And the strength I had to get through a room full of crying loved ones was beyond anything I could do on my own.

    I know most of this post has nothing to do with my illness but it has everything to do with my faith. This event was a spiritual revival for me. Remember how I had said at the beginning that my illness had started taking a toll on me spiritually, that’s because I wasn’t walking in faith. I haven’t been for the past 30+ years. Sure, I know where to turn when things get hard but what about the other times. And now I’ve lost the two people that were where I went when I had spiritual questions or needed spiritual healing just by sitting in their living room and listening to piano hymns for an hour while I visited. It is time for me to start living the faithful life I’ve pretended to live but where do I start?

  • Nov ’25

    Nov 7th – today’s the day! I saw Dr. L last week and he is basically waiting to see what Dr. G has to say. He seems to be quite a bit more concerned about me, but the last two visits I’ve been more concerned about myself. I think because I usually greet him with I’m ok when he asked how I’m doing and that hasn’t been the case the last two times. But all of the weight I lost earlier in the year I have gained back in just a few week period from the pulmonary hypertension and subsequent mild heart dysfunction so even though he says that I’m in the window for needing a transplant I’m now not a candidate because my BMI is too high. It’s just a vicious circle.

    I have another echocardiogram and unfortunately the results are back when I meet with Dr. G. She seems pleased with the results of the Tyvaso and diuretics so far but without the echo she can’t really give me any real prognosis, just stay the course and she will message me when she has the results.

    My benefit dinner is later that same day. WOW! Can I just say that people are amazing. We had such a great turn out. There wasn’t a parking space or a seat left in the place. People from all aspects of our lives, even a few people we didn’t even know. I can’t even express the amount of love and support I felt that night What I can say that between the GoFundMe and the money raised by this dinner has met almost 2/3 of the amount that the social worker at Cleveland Clinic told us to have on hand for transplant. I think I cried several times that night. Thank you again to anyone reading this that played any role in these at all. (I’ve tried several times to upload pictures from that night and it isn’t working, sorry)

    And the night ended with the best news! Dr G sent me a message that the echocardiogram showed improvement!

  • Summer ’25

    You may have noticed that I skipped Spring ’25, not much happened during those three months so I didn’t feel that making a post just for the sake of making a post was necessary. Although I did get to celebrate another birthday. Just a little side note, I share my birthday with the first born in our family, my brother, G. I was born on his 17th birthday-what a birthday present, right?! In our family we are known as “Alpha and Omega”. The first and last letters of the Greek alphabet but in the Bible, Revelations 22:13 Jesus refers to himself as “I am the Alpha and Omega, the First and the Last, the Beginning and the End”. I guess my parents thought this was a good definition for us as we were the beginning and the end of the nine children God blessed them with.

    At the end of May I was able to see my oldest grandson, K graduate from high school. I remember two years ago just pleading with God that I would get to see that happen and He didn’t let me down. I can’t say that I’m not selfish and hope and pray that I can do the same for my other three grandchildren but I also try to be realistic about it – BUT with God all things are possible! (Matthew 19:26)

    The beginning of June brought K’s open house and I was so happy to be able to “help” as much as I could with my portable oxygen concentrator. That same weekend, we celebrated my oldest brother, G and his wife, M’s 50th wedding anniversary! It was a nice time and I got to spend it with my parents sitting across the table from me. My mom was hilarious that day, joking around and just making me smile and laugh so much. It’s a wonderful memory as my mother died just three days later. I will never forget that day for as long as I live. We had just gotten to the ballpark to watch our granddaughter, M’s softball game. We were getting our chairs set up when my phone rang. Because my hands were full I let it go to voicemail. Once I got settled I checked my phone and saw that it was my Dad calling. I listened to the voicemail and knew I needed to call him back. He was asking for me to come to the house because Mom wasn’t feeling well and he didn’t know what to do. I call him back and he describes what’s been going on, I tell him I’m on my way but it’s going to be 20-30 minutes. He tells my mom that I’m on my way. She got up and went to the bedroom – she died in her bed just before I got there but my Dad didn’t know it. But I knew as soon as I walked in to their home. I could feel it! And a little part of me believes that he knew it too. I went back to check on her and I remember standing at the open door of their bedroom. I knew instantly, and I felt sadness and relief at the same time. Sadness for me, my family but mostly for my dad but relief for my mom. She was no longer a prisoner to her failing mind and she has gone to be with the Lord, she’s in a better place than the rest of us. But nothing prepares you for having to tell your dad that his love is gone. He was getting so frail but he insisted on coming back to the room before I called 911. He gently rocked her, hoping she would wake up – I knew she wasn’t, I had already done it all – and then he sat next to her, hand on her hip and just cried, not loud, not wailing just quiet, deep seeded sorrow because I think he was feeling the same sadness yet relief that I felt.

    About two weeks after I have my next appointments in Cleveland, several days this time as I have my heart catheterization scheduled with this set of testing. If you remember, my echocardiogram back in February showed that the pulmonary hypertension had returned. The heart catheterization confirms this and I’m diagnosed with moderate pulmonary hypertension. Having pulmonary fibrosis and developing pulmonary hypertension is usually serious enough to get you put on the list for transplant but because I seem to be managing fairly the same Dr. L says that he will have me see a pulmonary hypertension specialist first as maybe there are some medications that can help. I’m scheduled to return in September.

    By August, I have gained about 10 pounds despite not changing anything and I’m having more shortness of breath, coughing. I see my local cardiologist, he placed me on Lasix every other day. I see my lung doctor a week later. He doesn’t like that I have to wait until September to see the specialist – he calls Cleveland Clinic transplant center, explains what he sees and they move me up to the end of August. When I return to Cleveland in August, the specialist, Dr. G, explains pulmonary hypertension and states that I’m already starting to have some issues developing in my heart from the additional strain. She places me on two new medications – another water pill, Spironolactone and an inhaler called Tyvaso. I recognize this medication as the original lung dr, Dr. V., mentioned this in his notes back in 2023. The Tyvaso has to have insurance approval so I will have to wait on it. In the meantime, I decide that maybe I should be paying more attention to my oxygen at work as I had become complacent in that area. My first day back to work after this and I can’t even maintain my oxygen levels long enough to get to the first patient room on the nursing unit. Time to discuss this with my manager. We decide that for now the best course of action is to change my assignment, I will work from the office from now on and I will no longer work my Sunday rotations as I can’t work them by myself anymore. I feel horrible that my coworkers are having to pick up my work. I think it’s time I start to think about going on leave.

  • Winter ’24-’25

    The holidays have come and gone, both of my daughters hosted and we did our annual visit to Kraynak’s Christmas tree lane. January was bitter cold and now I have a new symptom – severe chest pain when the sub-zero temps hit. There are several days where all I’ve done is sit with the heating pad on my chest just to get some relief. And it’s not like heart attack pain, it’s like a burning in your lungs that radiates to the outside. The best way I can describe it is if you went outside with freezing wind, turned towards the wind and just kept inhaling as much of it as you could stand, you know the kind that literally makes your lungs burn. Well that’s how I feel just sitting inside my warm home and it doesn’t go away until the temperature rises. I am most comfortable once it gets to at least 20 degrees.

    February 19th, I return to Cleveland Clinic for my next round of tests. Since it has been a year since my first evaluations I have another echocardiogram done and I meet with the cardiothoracic surgeon this time. The cardiothoracic surgeon reviews the surgical procedure with me and states that my weight is somewhat of an issue, not so much to get listed but will make recovery longer. He would like me to loose weight – yeah, I know, I’ve heard it before. When I meet with Dr. L he reviews the echo, I have developed pulmonary hypertension again despite being on a first line medication for it by my local heart doctor. And my numbers are higher than my first echo back in April 2023. Time to schedule the right and left heart catheterization that they have been delaying. I will have it done when I return in a few months. Otherwise everything else looks stable.

    I meet with my local lung dr the day after Cleveland Clinic, we reviewed the plan and he states that he wants me to wear oxygen at night now as well as with activity. He thinks maybe I am breathing to shallow at night and my oxygen levels may be too low. I have a wearable pulse oximeter that fits on my thumb. I have worn it a few times at night and have never really noticed any issues but I will do what the dr suggests.

    Somewhere in the last few days my Christian Pandora song has played Strong by Anne Wilson and it has become my new song obsession especially now with this new uncertainty and the realizations that I am really getting worse and could potentially be listed by the end of the year. I really wish I could figure out how to place links for this music but maybe “you can’t teach an old dog new tricks” so you’re stuck just reading the lyrics unless you look the songs up for yourselves.

    Strong by Anne Wilson

    Strong, try to make ’em all think I’m strong. Yeah the face I keep putting on says I ain’t tired but these tear stained eyes ain’t lying.

    Cause hard, nobody told me life could be so hard, a weary soul with a worn out hear that’s barely beating but every time I get that feeling

    I hit my knees with my hands held high saying, dear Lord Jesus, you know I can’t do this on my own, I can’t do this on my own.

    Lord know I’ve tried, but I’m good at falling down, Thank God You’re good at picking me up off the ground. The world’s gonna try to break me but I know the One who makes me strong.

    Strong, like my daddy always told me so. There’s a place you can always go when you’ve got nothing and then he handed me the one thing that’s strong, doesn’t matter how old it gets, there’s power in the words in red in this old Bible and when I’m despeate for revival

    I hit my knees with my hands held high saying, dear Lord Jesus, you know I can’t do this on my own, I can’t do this on my own. Lord knows I’ve tried but I’m good at falling down, thank God You’re good at picking me up off the ground. The world’s gonna try to break me but I know the one who makes me strong, oh strong.

    I’m strong when I’ve got nothing

    I’m strong even when I’m weak

    Cause the strong arms of my Savior

    Are holding on to me.

    I hit my knees with my hands held high, saying dear Lord Jesus, You know I can’t do this on my own, I can’t do this on my own. Lord knowns I’ve tried but I’m good at falling down, thank God you’re good at picking me up off the ground. The world’s gonna try to break me but I know the One who makes me strong.

  • Fall ’24

    My oldest grandson, K, started his Sr. year at the end of August. I’m praying that I get to see him graduate. Deep down I’m not so sure I will get the same with the other three but I try not to dwell on that. I’ve been very fortunate in my life, so people never get to experience any of this so I shouldn’t be saddened by that idea, I should just learn to be more thankful for what I do have.

    I’ve also met with the new lung dr., Dr. B. I know him from working at St. E’s hospital prior to me changing jobs/hospitals back in 2017. He’s very knowledgeable and I believe may be the head of the lung department. He gives me his personal cell phone and says to reach out with anything I need and then apologizes for me having such a serious diagnosis through no fault of my own. He says that giving a diagnosis to someone who has smoked all their life is kind of an expected thing and it doesn’t really affect him but it’s when someone’s body has turned against itself and knowing that the prognosis is bad unless you can get a lung transplant is a tough pill for a dr to swallow.

    I’m not really sure about the timing of the next event, I believe it may have been August, possibly September but I remember the day like it happened yesterday. The event itself doesn’t have anything to do with my diagnosis but my ability to respond to it and the emotions that it provoked does have a bearing on my story. My siblings had planned a “sibling vacation” earlier in the year but I just didn’t feel that I could go at the time that they were planning it. Well, I think that maybe that was a God-driven decision too as on the very first night that they had all gathered in Branson, MI my mom went missing. Or at least that’s what we thought. My dad called me and said that he couldn’t find my mom, he had fallen asleep and when he woke up he couldn’t find her. She has dementia but she doesn’t normally wander off, well I say that, but my sister-in-law has found her in the abandoned barn on their property before. Luckily, I only live about 10 minutes from my parents’ house, so my son and I head over to help my dad look for her. In the meantime, their neighbor was also out looking for her and located her just as I pulled in the driveway. But on the way there I was in pure panic because I didn’t know how I was going to be of any use because of my inability to do ANYTHING! At least that’s how I felt at the time. My parents needed me and I felt worthless. My mother was fine, but it was just another reminder that life was never going to be “normal” for me.

    At the beginning of September my husband and I finally take a day trip-I don’t think we’ve done anything all summer. One of the places we visit is Punderson State Park. We walk down to the boardwalk but the climb back up is extremely difficult. I think my days of doing any kind of walking that isn’t flat is over. We stop at the bike trail on the way home and use our scooters for the first time. It was a nice way to go more than a few hundred feet. I hate that everything I do, even when I’m having a good time, is always marred by my illness. I had a great afternoon but all I can concentrate on is my limitations.

    In October, another round of evaluation tests in Cleveland. I also meet with an infectious disease dr (routine) and with a GI specialist. She reviews all of the tests from my last visit. She states that while the manometry test shows that I do have some impaired swallowing it will not require me to need a feeding tube after my transplant. I am grateful for that. I will, however, need surgery several months after transplant to correct my GERD, called a fundoplication. And she is going to order me a MedCline pillow so that I am sleeping more upright now to reduce the aspiration of stomach contents at night. Otherwise, all tests are fairly stable, come back in another 3-4 months. The MedCline pillow shows up about a week after my visit. I think it’s huge and takes up my whole half of the bed. I feel like I’m sleeping on a mountain and B is in the valley – apparently no more cuddling to fall asleep. It’s takes a little while to get used to it but I do notice that I’m not coughing in the mornings as much anymore.

  • Summer ’24

    I’m due to go back to Cleveland Clinic at the end of June, in the meantime, I’ve done all of my homework. I saw a gastroenterologist and had my colonoscopy but I also had an upper endoscopy and a stretching done as we discussed my issues with food sticking. During the endoscopy they found esophagitis with esophageal stricture – biopsy results came back with tissue consistent with Barrett’s esophagus. Both have been caused by severe chronic gastro-esophageal reflux disease (GERD). Because of this I have several tests related to GI issues scheduled this time around to see if I will need a feeding tube whenever I need my transplant, because if you remember my lung biopsy results, I’m aspirating – most likely at night from severe GERD. All of this is related to my auto-immune disorder – the one that I learned in school was basically dry eyes/dry mouth – yeah, maybe more teaching/research needs to be done on that!

    I have a follow up with my lung dr in April. I forgot to mention that in my last post. I’ve been having issues with the antifibrotic medicine, OFEV. I vomit almost every day with it, even if I take the protein they recommend, so we decrease the dose to half. We also trialed coming off of Prednisone since I have been on the CellCept and prednisone now for a year. The lung dr and I agree to try to eliminate the steroid. Then he tells me that in July he will be leaving the practice. My world seems to be crashing….the Dr. I’ve come to trust with my life is leaving the practice but he asks me which dr in the practice I would like and makes arrangements for that physician to take over my case. As much as I hate to see him leave, he’s young, intelligent and caring and the nurse tells me that he has a wonderful opportunity set before him – I don’t ask what that is but I know he well do great things for the next patient he cares for

    As far as the prednisone, Let me tell you, the withdrawal from that if awful. I was only on a small maintenance dose so we don’t wean off – I just stopped taking it. Three days without it and I’m already aching all over, weak, nauseated. By day 10, I’m an emotional mess, I’m crying at work, I’m crying at home, I feel very emotionally unstable. By the end of the second week, I’m also starting to have issues with my oxygen saturations and my ability to function without oxygen is declining. I’m finding myself needing it for things I haven’t needed it for in almost a year. I get in touch with my lung dr and he puts me back on the steroids, within a day I’m starting to feel more “normal”.

    My Cleveland Clinic appointments goes fairly well. The worst part was the GI tests, June 24th. There are two of them, an esophageal manometry test and a GI probe. The manometry test measures muscle pressure and coordination of the esophagus. A GI nurse placed a thin catheter thru my nose into my esophagus and then gives directions on when to swallow sips of water, not bad until she gets to the part of the test where I can’t swallow for like 15 or 30 seconds, I can’t remember the exact length of time now. You would think that isn’t hard to do, just don’t swallow for 15 – 30 seconds right – wrong, not so easy for someone who coughs like 200 times a day and it’s an automatic reflex for me when I feel a cough coming on. The nurse gets extremely upset with me and says “It’s just a mind over matter kind of test”! No kidding! I’m seriously trying lady. It isn’t until I throw up all over myself and almost on her that I get any sympathy from her. That’s when she realized I really was trying and she aborts trying any more “episodes” and says she will just send what she has. Next comes the pH probe, this will monitor the acid levels in my esophagus for the next 18 hours or so. Again, the nurse placed another thin catheter in my nose and down my esophagus. This one will stay in until the morning when I remove it myself. The probe is attached to a monitor and I am given instructions to press a button every time I have reflux symptoms and I am to write down when/what I eat and drink. All of this information will be turned in to the GI department in the morning. This part isn’t too awful except for when I eat. I think that the end of the probe is either IN my stomach or very close because every time I eat it feels like my stomach is pulling the tube further in – it’s quite annoying and I keep pulling the tube back a little bit all night.

    The next morning, I return everything to the GI department and complete my normal transplant eval tests that I will complete every time I come, lab work, chest xray, blood gases, lung functions test, walk test and meet with the dr and nurse coordinator. Dr. L reviews the manometry test, I do have SOME issues with swallowing but he says it shouldn’t be a contraindication to getting a transplant but could affect post-op management, especially feeding strategy. Overall, I am stable and not reading for listing. I will come back in about 4 months and I will see a GI specialist (to discuss post op feeding needs) and an infectious disease dr then (this is just routine).

    July 20th, my family and I go to Pittsburg for the Pulmonary Fibrosis Foundation walk. I have been able to walk the distance so I am able to participate (I think my last post I wrote that it was 2 miles, it was only one – there was a 2 mile option but I wasn’t sure I could do that distance, it takes me half an hour just to do one! Having my family with me is just incredible, their love and support make me speechless. I would love to be able to do this again next year. There are many families there, some have lost loved ones to PF already, some are there because they had PF and now they have new lungs, some are like me and currently have PF. One lady sought me out though and asked me about my situation. She had just lost her husband to idiopathic PF a few months before the walk, she was there with her granddaughters and walking in his honor. She was such a sweet lady – she showed me such compassion all while expressing her own grief. Some humans just amaze me, and she doesn’t know it, but she left such a mark on my heart, I will never forget her.

  • Feb ’24 – transplant eval days

    Well it took until the beginning of February to get the antifibrotic medication and I’m scheduled at the end of the month for my lung transplant evaluation. In the meantime my middle one interviewed and accepted a position in my office – I think it was a God-send for both of us. Her for more money without needing to decrease her time away from her daughter and me because I won’t feel quite so bad asking for help. Not that my co-workers wouldn’t help me, I just feel weird asking them. (It’s a “me” problem).

    The lung transplant evaluation itself is a two day process after an initial phone interview and a Zoom introductory class with a social worker for the program. My first day is Feb 26th. First up is lab work – and LOTS of it – I’m pretty sure it was like 23 tubes, not exaggerating, I wish I would have taken a picture. I think I was more nervous about this than any other part. Luckily, the lady was very good and only had to stick me twice because my vein “dried up” with about six vials to go.

    Next was a battery of imaging studies – ultrasound of the liver, chest x-ray, high resolution CT scan of my chest, echocardiogram and vascular studies of my neck and both lower legs. I think we went to three different building at the Cleveland Clinic on day one and I’m exhausted and ready for a bed! We booked a night at the InterContinental Cleveland since neither of us were familiar with the area and it’s currently winter in Ohio – this hotel is connected to the hospital campus by the SkyWalk – a raised, indoor tunnel system between the buildings. As convenient as it was, it was expensive and wasn’t the best experience. Our first room key didn’t work so B went to the lobby to get it resolved but in the meantime my portable oxygen concentrator battery is just about dead. I’m tired, I’m sore, I’m hungry – and now this – all I can do is sit on the hotel floor outside the room and wait, because at least sitting my oxygen needs aren’t as high. Finally we get to a new room and try to order room service and the room phone doesn’t work, luckily there’s a phone in the bathroom. I get our meals ordered and take a long hot bath to try to unwind from the long, grueling day. While in the tub I bring up the picture of the “Jesus Calling” devotional pictures I had taken the night before as I had not read them and I just wept.

    Room service arrives a little while later, the food was excellent and the set up made me feel quite posh. Yes, it doesn’t take much for a simple girl like me. Haha! Now to get some much needed rest to tackle day two.

    Day 2 consists of a FULL set of PFTs – I absolutely HATE the full sets, they are so difficult. Along with my first official 6 minute walk test – basically you walk as fast as you can for 6 minutes and they measure the distance. These are all for baseline information. The rest of the day is basically meeting different members/departments of the team – social worker, pharmacist, nurse transplant coordinator and finally the dr. The social worker goes over a lot of personal/family interviews, provides a lot of information and informs us that we should have approx $35K set aside for expenses. My head is spinning already!

    The nurse transplant coordinator does most of the history taking for the physician and also provides some information. Then the pharmacist comes in, goes over the medications that I’m currently taking and what I will be taking after transplant. Luckily, I’m already on many of them. Finally we meet with Dr. L, he will be my transplant evaluation dr. He doesn’t actually perform the transplant but he oversees all of my testing and he is one of the ICU physicians. After reviewing everything from the last two days it looks like I will be an ideal candidate whenever the time comes that I NEED new lungs. But best to keep your own lungs for as long as possible because getting someone else’s lungs is not an easy process and there are no guarantees. And the rejection/failure rates for lungs are much higher than other organ because they are the only transplanted organ that come in contact with the outside environment. The first year is the most critical but the Cleveland Clinic is known to be one of the best in the nation. He states that 80% live at 1 year out, about 50% at 5 years and 30% at 10 years. He then says but keep in mind that the Cleveland Clinic also performs transplants on patients that other programs turn away so those numbers include patients that otherwise would have no alternatives. He also informs us that getting a second lung transplant is an option should I go into rejection/transplant failure and qualify. This does help relieve some of the anxiety because right now all I’m hearing is “yeah, you can go thru all of this but your lifetime is still limited”. Which I know, I know, there are no guarantees for any of us but hearing it makes it reality.

    Should I choose to pursue transplant I am to return in about 3 months for more testing and will need a mammogram and colonoscopy completed back home. I will also need to loose about 15 pounds – oh OK – and how am I supposed to do that when I can’t exercise but I have a zoom appointment with a dietician in a few days. OK – well, that was A LOT to digest and now I have homework – reading all of the materials, completing my healthcare power of attorney paperwork, asking family members to consider being caregivers for when B needs to return to work and making more appointments. To say I’m overwhelmed is an understatement