Author: Carol

  • MAY be a set back

    Well just when I was thriving the middle of May kicked me in the chest. The month started out ok but I was having some small issues at pulmonary rehab. A couple of times I wasn’t able to finish the exercises on my normal 4L and I had to raise it to 6L to be able to finish. I didn’t think much of it, thought maybe I was just going too hard or some days were a little hotter or a little more humid. But then I noticed every day seemed just a little harder than the last and it got to the point where I was getting concerned. I thought maybe I had picked up “a bug” on my outing with my son to Cleveland. We did a quick trip early in May so that he could be a little familiar with the area around the Cleveland Clinic, then visited the Museum of Natural History, went to Cheesecake Factory for lunch and then checked out Trader Joe’s. Well, it was a Saturday and the Trader Joe’s was packed and I didn’t wear a mask.

    By Monday, May 11th I was feeling pretty short of breath and I could hear my own breaths in the evenings, kind of sounds like Rice Krispies – that’s what I sounded like when I was first diagnosed. I had gone to my grandson, E’s baseball game that evening as usual but his mom was very concerned about me, she could see the change in me and I think for the first time I may have actually scared her. She told me later that the area under my eyes was purple and she knew I wasn’t getting enough oxygen. So I made plans with my middle one to get a ride to the ER the next morning with her on her way to work at the hospital. We decided that I would take some of the prednisone I had on hand and use my asthma inhaler but if I got worse we would just go! By morning I seemed to be doing a little bit better, I decided to use pulmonary rehab as my gauge of whether I needed to go to the ER or just call my doctors and manage at home. I was able to do the whole 60 minutes without adjusting the oxygen so I contacted both my primary doctor and my local lung doctor, described what I was feeling by MyChart messages and waited for replies. I continued to take a small dose of prednisone and use my inhaler. My PCP ordered a steroid taper later that evening. On Wednesday, I went and had my 6 month bloodwork done for upcoming tests with my rheumatologist and my PCP. By Thursday morning, the labs were all back and some of the labs were “off”. I went to pulmonary rehab and then messaged my PCP about my elevated white cell count. His nurse practitioner met with me online, we reviewed the past few days. She ordered a chest x-ray and two antibiotics “just in case” since my system doesn’t work like everyone else’s. Got the chest x-ray the next day, it was normal so I decided to NOT take the antibiotics as I knew by this time that it was an exacerbation of my pulmonary fibrosis. I completed the 10 days of prednisone that my PCP had ordered and was feeling somewhat normal. And then two days later, the wheels fell off. I got up to go to pulmonary rehab and my lungs were burning and I could literally feel the inflammation in them. I went in to rehab on my normal oxygen liter flow but I was NOT doing well, they wouldn’t let me even attempt so I knew at this point I needed help. I went back out to my car after resting for a few minutes, they offered to take me to the ER but I’m stubborn and stupid and hate looking weak and needing help so I declined. I call my daughter that works at the hospital and try to explain what’s going on but I’m so out of breath she can’t really tell what I’m saying other than going to ER. She met me in the parking lot with a wheelchair and I’ve never been so grateful for a wheelchair in my life.

    I pretty much get right in (I won’t explain how, I’ll just chalk it up to God working thru people). I didn’t want to go to the hospital because our little hospital is busting at the seams since the other local hospital shut it’s doors last year. And going there, quite frankly, puts me a greater risk of getting something. BUT, I KNEW I NEEDED to be there, I had already tried to manage at home. Well, I bought myself a three day hospital admission with very high doses of IV steroids/antibiotics/respiratory therapy. The antibiotics were stopped as soon as all of my cultures came back negative. BUT the IV steroids have caused my blood sugar levels to go into the upper 300-400 range. The day after the ER they start me on finger stick blood glucose levels and a sliding scale of insulin. The next day I’m put on Lantus insulin every day because the sugar levels just won’t budge. In the meantime, every day the lung doctor decreases the steroid dose as every day my respiratory status is getting clearer and I’m able to do a little more with less shortness of breath. Friday evening they decide to discharge me home. Slow steroid taper to get me through to my next Cleveland Clinic appointment in a couple of weeks. Two insulin pens and check my blood sugar four times a day. Yay! This should be fun!

    I was very fortunate to have family and co-workers visit while I was there. My three youngest grandchildren came to see me and drew me pictures. My sister brought me in snacks because I stayed longer than I was prepared for- and this worked out good because when I went home I was so concerned about my blood sugars dropping in the middle of the night so I use her snacks at night and THRU the night to get me until morning.

    The prednisone is NO joke either. My eyesight has become very blurry and then when the blood sugar spike happens at noon it gets even worse. My blood sugars continue to be in the 300 range until about 8-10 pm and then they slowly come down to ALMOST a normal fasting level by morning. AND now I have insomnia most of the night. By 4 AM, I am so jittery I can’t lay still. I think I’ve slept maybe two nights since May 25th.

    I went to see my primary care doctor today (this was a scheduled visit from December, how fortunate). He reviews everything and says “well, Carol, I know the prednisone is making your blood sugars very high but unfortunately your lab work before the prednisone taper I gave you in the middle of May shows that you are type II diabetic. The good news is you now qualify for the GLP-1 that the transplant team wanted you on so if that’s what you want to try I think we can get it approved now and maybe you can loose a little more weight and get these sugars at a more manageable place.” I don’t know whether to be grateful, sad, frustrated, I kind of feel them all right now. Just another downward slope on this roller coaster ride I’m on. Physically I’m getting back to where I was and I will restart pulmonary rehab on Tuesday and that will be a better defining activity for me to see just how much of a set back May may have been for me (hence the title of the post “May be a set back” as in ‘maybe a set back” and yet “MAY” was a set back.) Hopefully some of you get my weird word usage. I’ll write again after my Cleveland Clinic appointment. Not sure what all of this will do with my criteria.

  • Adjusting

    It’s been a while since I posted last as I’m really not sure what to post next and I’m still not sure where this post is going as I write this, so hopefully there will at least be some direction to it and not just random thoughts. After my father passed away I felt a HUGE void. My life changed so much in just a week’s time between leaving my career and loosing my father that I was seriously struggling, mentally and spiritually, which led to some physical decline as well. There were days in early February where I was just “sick and tired” of being “sick and tired”. I had lost purpose in my life. Then God began to intervene, I started having gut feelings to start this blog as a way to “help other people” (or so I thought, it’s only now after doing it for two months that I think it was really meant to help Me!) I didn’t do it right away as I was also starting pulmonary rehab around the same time. But I prayed about it occasionally just to make sure it wasn’t my idea. Around the end of February I also started getting gut feelings that I needed to get back to church AND some dark thoughts as well. I think I’ve mentioned those already, about having compelling feelings about getting my story down. Well, that’s because I was having recurring thoughts that I wasn’t going to pull through this much longer, (Having a serious health condition is brutal to your mind and spirit sometimes). I also didn’t want to ignore the thoughts (just in case).

    I began listening to a local pastor on YouTube the first week of March. The sermon was about “the faith of a mustard seed”. Matthew 17:14-23. I won’t get in to the message but it spoke to me. That first week of March I also applied for social security disability because I know it takes months to get approved, IF you even get approved the first time. I remember the day because it was my mother’s birthday, March 2nd. Well, after I finished applying, I needed to print the packet along with some of the medical records so that I could get it mailed. Well, this was the first time I’ve had to use the printer with the new laptop that I have . It didn’t go smoothly as the laptop wasn’t communicating with the printer. I tried several things and was just getting more and more frustrated because I just wanted to GET THIS DONE! Somehow, in my goggle searching I came across a website where I could download some programs to link them together. I have absolutely NO IDEA what I’m doing and At one point, I yelled out, “OK God, If you will get this to work I will go to church on Sunday!” The programs needed to download and reboot and by this time I was completely frustrated so I decided it was a good time to just walk away and I believe we went grocery shopping. I don’t really remember but I know we actually left the apartment. When we returned my middle one was home by this time and I figured maybe if what I did didn’t work maybe she would be able to help me figure it out. But low and behold it worked! The laptop synced up to the printer and I was able to print everything I needed. I threw up a ‘thank you’ prayer and remembered the last words I had said, “OK God, if you get this to work I will go to church on Sunday. And I did!

    I posted on FaceBook from the parking lot of the church March 8th and made some kind of statement about I’m here to receive whatever message you have for me – because apparently God is on FaceBook, haha. But the message I was expecting was not what I got. That day the sermon was titled “Death and Taxes” – yeah, like the famous quote by Ben Franklin about “in this world nothing can be said to be certain, except death and taxes.” I had already started my blog at this point but I had not made it “viewable to the public” yet. Because I was having those dark thoughts about dying and then after going to church for the first time in about 20 years and the sermon being about death I knew I needed to just do it. Still I hesitated for two days and you can go back and read what finally prompted me to do so. Little did I know then that God would take that post and use it to get me back! I won’t go in to detail as it is very personal and God’s work in progress but He used what I thought was meant for “helping others” to “help me”. He truly does work in mysterious ways and now I believe that my feelings of my death weren’t my physical death but my spiritual death. I was asking for healing but NOT living a life for Him. I was searching but not really opening my eyes to what He was showing me. I was talking a good talk but that was it, I was spiritually dying and was in need of new life! I have gone to church now every Sunday except for one. I have bought myself a new study Bible and I read it daily, sometimes 2-3 times a day. I’ve pulled out my keyboard and am re-learning all the hymns my mom and I used to sing together. I’m texting and sharing verses with my family because He just keeps showing up now – EVERYWHERE!

    As far as physically, I’m also doing much better. I returned to the Cleveland Clinic on April 15th. My echocardiogram showed stability in my pulmonary hypertension so the medications are working, my lung function tests were the same and my yearly CT scan of my lungs showed NO PROGRESSION (OFF of the anti-fibrotic medication, yeah, no additional fibrosis growth WITHOUT medication, that’s a miracle in itself). And the pulmonary rehab that I’ve been doing since mid-February has made me much more conditioned. I walked the FARTHEST I have EVER walked during the 6 minute walk test. Yes, the farthest distance in the 26 months I’ve been going to the Cleveland Clinic. And not by a mere few feet – 120 feet! That week I also got my approval letter from the social security administration APPROVING my disability claim. Not 5 months like normal but 5 weeks from mailing it in! And two weeks later I celebrated my 55th birthday, my third since my diagnosis. Three years ago I wasn’t sure I would even still be alive but I am, I’ve just learned to adjust – time and time and time again.

  • 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!

  • Fall ’25

    The Tyvaso came towards the beginning of the month and I had to have a nurse come show me how to use it, apparently it’s mandatory. It came the week before my siblings and I went to Tennessee. I was bound and determined that if they went again, I would join this time. I’m a little concerned that I won’t be able to do a lot of things and getting ready for a trip with all of my medications and oxygen now requires a lot of additional planning. My siblings and their spouses were so considerate of my limitations. They pretty much did whatever it was I felt I could do. Our first day was in Pigeon Forge, we went with no plans or expectations. We played putt-putt golf, which ate up a lot of our time when you think about 12 people playing. We ate at Margaritaville. I really wanted to do the Alcatraz crime museum but between the putt-putt and the walking I had enough for one day. I have several days ahead of me and don’t want to be a party pooper by exhausting myself the first day. The second day was Gatlinburg, we started at Skypark, they have a Skybridge that I wanted to mark off of my bucket list. It’s 680 ft across (the longest bridge of it’s type in North America) and 140 ft off the ground. We took the walkway to the one side and walked the Skybridge back. I did ok until about the last 200 ft or so when it becomes an incline. Inclines are almost impossible for me now and my concentrator just didn’t keep up with my needs. By the time I got to the other side I was so out of breath that it took a long time to recoup. It didn’t help that I had a mental breakdown. I was feeling so many emotions, I was proud of myself for doing it but also sad that I just can’t be “normal”. I was trying to regain my breath when my brother, G (Alpha) came to my side, he didn’t say anything, he didn’t have to, just his presence and support was all it took and I began to cry like a baby. Then others joined in to let me know that I wasn’t alone and I want to believe that they felt what I was feeling. I finally regain my composure after making a fool out of myself in public but Hey, I got a t-shirt out of it from G to remind me that “I did it”. As hard as it was, “I did it”. We have lunch at Dick’s Last Resort and I think we all had a great time. I would not suggest you go there unless you have a good sense of humor as the service is intentionally rude for entertainment purposes. By this time I am ready to return to our AirBandB but most of the others stayed and tried some Tennessee whiskey and did a haunted house. It’s a good thing I did return when I did because by evening my leg muscles were angry with me. I think I actually may have gone into a small case of rhabdomylosis because this wasn’t normal muscle aches, my leg muscles were rock hard and I could barely move them. Luckily the room that B and I got was the only one with a jet hot-tub. B helped me get in and out of it and it seemed to help some and then I downed 800 mg of Motrin. By morning I felt better but today is a day of rest. We do visit a small local store that sells Amish goods, did the Smoky Mountain Alpine coaster (secretly, I may have enjoyed this the most), ate at Boss Hogg’s BBQ shack and then went to a small antique shop. Most evenings are spent playing games or sitting on the porch. I don’t know about anyone else but I’m having a good time. Our last day we make the long trip to Cade’s Cove Scenic Loop, it’s part of the Great Smoky Mountains National Park. I have to say I was quite disappointed in my choice to do this. There was really only one part of it where I could actually get out a view more than one building of the old settlements but at least the driving views were cool, AND I got to see a bear down in the creek just as we were living thanks to B’s quick eyes or I would have missed it. We ate a Mexican food truck called Taqueria Macho Taco on the way back to our place. The evening brought a heart to heart with my big sis, B. She lives in Washington state and she’s the one that also has autoimmune disorders. I remember during our conversation I told her that “I’m not afraid of dying, it’s living my family behind. I don’t want to be the reason they feel grief and pain”. And it’s the truth. Dying doesn’t scare me, I know where I’m going. But when I think about them living life without me, that’s what brings the emotions.

    When we return it’s not long and my father needs to be admitted to the hospital. He’s very anemic and needs blood. They keep him for several days, do several tests and give him blood a few times. They really don’t have many answers and the only way to make a final diagnosis would require a bone marrow biopsy to see if his body isn’t producing any blood cells. He declines the test. The only other thing they are thinking is that his mechanical heart valves are basically shredding the cells when the blood goes thru them. The only treatment for that is surgery and he states he won’t do that either. Our family’s annual FallFest is coming up and we (the family) don’t want Dad to miss it as we know this will be his last. Luckily, things get arranged in time for him to be discharged and he is able to go. Another blessing from above.

    The next weekend brings about a change that I have been putting off for two years. Back when I was diagnosed B wanted to move me into a smaller place because our home and yard are just too much and getting me moved “in to town”, will get me closer to my girls and closer to the Cleveland Clinic. Well, I didn’t want to give up my home, so our son stayed behind and we rented a lower level apartment in the same building as my middle daughter, K. This was also a blessing in timing as K’s building stays pretty full as it only has 12 apartments and they go fast. Well right after my appointments in August she said that the bottom apartment was going to be available. This apartment just happens to be the closest one to the laundry area too! I’m telling you, I can’t make this stuff up. I believe this is the hand of God. Always moving things in to path just when I need them. On October 4th, I said goodbye to my home, tears streamed down my eyes. Looking back at it, that was silly because we still own it. I can still go sit on my back patio any time I want, but that day it felt like I was closing a large chapter of my life. But, I’m happy to say that B was right. The apartment is much more manageable for me, so now I don’t feel overwhelmed, I feel accomplished!

    Next up is my next round of appointments and a benefit dinner for me and my family to help alleviate some of the expenses we are about to incur. My middle daughter had already started a GoFundMe and her best friend is organizing the dinner. The dinner is planned for the evening of Nov. 7th, I will see the pulmonary hypertension specialist that morning. I hope I don’t get any bad news to damper the evening. Guess you will have to read the next post to find out.

  • 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.

  • Spring ’24

    Spring is both a time of sadness yet a new found appreciation for God and his creation for me. After my initial evaluation for transplant I slip into a depression, morning drives to work are the worst because I am alone and it is silent, a deafening silent where all I can here are my negative thoughts and many drives are spent filled with tears from the moment I leave my driveway. I notice that I have to change my mindset or I am going to go to a very dark place, one from which I may not return so I start a Christian music station on my Pandora. I don’t listen to much Christian music other than at my parents’ home. I grew up with gospels and hymns in church but I haven’t been to church in over 15 years but there are a few artists I know about so I plug them in just for a start. Well, the more I listen, the more grateful I become, in spite of my situation. The more grateful I become the more I notice things to be grateful for. One particular morning as I’m driving to work I notice the trees are beginning to bud/bloom but I’ve never noticed the colors before, the pink and white blossoms were vibrant, almost glowing and the ground is speckled with purple and yellow from the early spring flowers, the sun is shining and this song begins to play and the lyrics just go through my soul (Good Day by Forrest Frank)

    “I’m ’bout to have a good day, no matter what they say, Sun is shining down on me, birds are singing praise. I’m ’bout to have a good day, in every single way. The God who made the universe knows me by my name so it’s a good day.”

    This is when I decide that I AM going to have a good day – despite my troubles and sadness – and I was going to find reasons to have more “good days” from here on out. And God didn’t disappoint – He gave me a solar eclipse in April and the northern lights in May. Once-in-a-lifetime events and He provided them for ME (and yes, that is how I felt then, I was a little self-centered). He was giving me opportunities to acknowledge and experience His creation. I don’t know the statistics on experiencing either of these events in a lifetime but I’m sure it’s rare – and I just got to experience them BOTH from my own yard in a two months span. If someone could crunch the numbers on the probability of that happening I would be very interested to know what it is.

    The rest of the spring is spent attending as much of my grandkids events as possible and signing up for the PFF walk in Pittsburg set for July with my family, so I start walking more and more because I want to WALK not just go. I need to be able to do 2 miles (I haven’t done more than 1 since last August). Friends and family have been so supportive and generous and have donated over $1000 to the PFF for ongoing research on behalf of my family team. As far as my grandkids’ events, there’s dance, softball and flag football. I just wanted to enjoy being a Nana – I may not be able to be the active Nana I wish I could be but that doesn’t take away my desire to be with them, encourage them, support them, love them. As a parent I was always too busy managing it all that I wasn’t enjoying it. God gave me a second chance through my grandkids so I’m going to sit back and enjoy this time around.

    I also celebrated another anniversary, another birthday and another Mother’s day. I remember how scared I was at this time last year that I wasn’t sure how many more of these I would get. I can’t say that I’m still not scared but it’s no longer at the forefront of my mind – now it’s more of a gentle reminder to enjoy each day and when I’m struggling to find something to enjoy to sit and REMEMBER. Remember the fear, the anxiety and how far I’ve come. Remember each struggle and how we adapted to overcome. Remember how family and friends supported and loved and cared for me. Remember to count my blessings for I already have so much to enjoy. (I will post the lyrics to another favorite of mine under the Faith tab, unless I can figure out how to post the actual song – which I doubt). I also tried to upload a video of the solar eclipse but it was too long and I don’t know what I’m doing,