Category: health

  • 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.

  • 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.

  • Time to repeat tests

    October 2023, I am still off of the prednisone but I’m just getting over an upper respiratory infection. My first test is the echocardiogram to check on the pulmonary hypertension. The cardiologist changed my medication back in May in hopes of avoiding a heart cath right now. This is done on Oct 12th. I’m not very well versed at cardiac stuff and quite honestly I haven’t done a lot of research about it either. Figured I would cross that bridge if I needed to because you can’t really diagnose pulmonary hypertension without the heart cath anyways, the echocardiograms just give estimations. He is mainly looking at the RSVP number as far as I can tell, in April it was 45 which was considered mild PH. Today is was 29!! PTL – prayer number 1 answered!

    Second test came on the 17th, PFTs, the lung function test I have been concerned about since I’ve been sick lately and no longer taking the steroids. And I hate these tests, they are so hard. I don’t think I’m an anxious person but these past few months have become more than I can bear sometimes. I did not take today off of work as I asked for the lung tests to be done at the hospital where I work. On my desk I have the “Jesus Calling” devotional and this is for October 17th and I am reminded that I am not in control and I need to hand my anxiety and worries over.

    I complete the PFTs, I still hate them but my FVC number is stable and my diffusion number is BETTER! PTL, prayer number 2 answered!

    CT of the chest is on the 27th, unfortunately, those results weren’t as impressive as the first two tests, but it only showed slight progression in fibrosis, however, it showed mild bronchiectasis. ??? Again, a term I’ve never really encountered as a nurse, probably should have but you see I’m not your normal “went to college for four years in a nursing program, bachelor’s of science in nursing” kinda nurse. I was an LPN for six years in a nursing home then went to the hospital for two years, studied on my own thru an at-home program before they were a “big thing” and took tests at a testing center to gain credits for an associate degree. In order to sit for an RN license I had to pass a weekend clinical down in Columbus where I had to pass several clinical stations then work with and pass two adult patients and one pediatric patient under the direction of clinical nurse instructors that I had never met. I don’t have the same education most nurses have, mine came more from patient experience in the nursing home/hospital while learning the book stuff on my own. So some of this medical stuff is even greek to me even though I’ve been a nurse for over 25 years. I guess I will have to see what the lung dr says, maybe it’s nothing to be concerned about.

  • Family guilt

    Today’s post will jump around a bit because I did forget to write about something that I find important in my journey, not so much because of how it affects me but because of how it affected my son. I knew that I was going to start forgetting things in the order that they occurred now that I no longer have journal entries to go off of (which I will be remedying as I am going to be starting those again so that I have my true feelings down on paper when I get to the present – we have a ways to get to today). Unfortunately, you my readers may have to be accustomed to my random thoughts as they occur however until we get the next two years covered – sorry. Anyways, the first part of today’s post was triggered because of the second so bear with me.

    August 2023, prior to K’s accident in Sept., my son went to Niagara Falls with his girlfriend at the time and her family – I believe for an over-night stay ? – but NOT the point. Upon their arrival I received a call that some health issues had transpired in her family which prompted my son and his girlfriend to get tested for Covid – low and behold they were positive. My son called and said they were in the middle of gathering up a week’s worth of his clothes and personal items and scrubbing down everything they touched with Clorox wipes – he would go to their home to quarantine for the week – and with that he broke down over the phone. He was so stressed that he may have just brought Covid in to my home but he didn’t know what else to do. He was so scared, you could hear it thru the phone. I tried to reassure him that the few minutes that he spent getting his things would be fine and that they were doing all the right things – wearing gloves and masks, cleaning surfaces – but again it’s that feeling of “what if I’m the ONE”, and my poor family feel it every time they get a sniffle, a scratchy throat, start to feel the slightest bit warm. My husband has slept on the couch numerous nights “just in case” or kisses me now “on the forehead” because intimacy spreads germs. My children wear masks in my home just out of precaution because they have a slight throat tickle. I’ve missed baseball games and soccer games because parents weren’t feeling 100% and it was “for the best” that I not be there. It’s funny how love and consideration for me made me feel so alienated back then. Intentions were in the right place but at the time all it did was remind me that I was sick and just made me feel more alone.

    Now, for the second part of the post we will need to switch gears a bit. My last post I wrote about my grandson’s K car accident. At the end of it I wrote about being angry I couldn’t help in a time of crisis but that getting him home allowed me to let go of the anger – did you notice that I also said GUILT? Today, I’ll explain why I had guilt.

    Prior to the accident we had planned to take our middle daughter and our youngest granddaughter, C to Niagara Falls where her uncle had just been. Our middle daughter is a single mom who works part time in a bakery while raising her daughter on her own. Needless to say she doesn’t make a lot of money – not nearly enough to enjoy things like trips, so we planned a small weekend. Well, K’s accident happened on Friday afternoon before said weekend. With his femur surgery performed the night before and not yet realizing the gravity of the bleed in his spleen when had a family discussion, including K’s mom, and with her blessing decided to still go to Niagara Falls but just to make it an even shorter trip. We still got to do a lot, even got C to ride the Maid of the Mist, and I think she enjoyed her first real “trip”, but man did I have some Nana guilt. I felt like I had chosen one grandchild over another – and in a way I did. But I kept trying to tell myself that we went with his mother’s blessing and he had better visitors that night anyways. (see the last photo)

    I’m not really sure why I felt compelled to write about the Niagara Falls trip in my health blog – some will say it has nothing to do with my lung health – but it does have to do with my mental health. I’m also trying to show how my deteriorating physical health impacts every decision I make in my life. So maybe you may not understand the point of this one particular post but keep reading and hopefully each post with eventually come together and everyone will be touched by something I’ve said.

  • Follow ups

    I’ve had follow up appointments with most of the specialists in August. The heart doctor is still saying no heart catheterization yet since I just started treatments, he will repeat an echo in October to check on the pulmonary hypertension and see where we are.

    Lung dr has no real changes, is leaving the prednisone dosages up to the rheumatologist. I’m hoping I can get off of it soon because I have some serious prednisone “moon face” and I’ve gained 10 pounds. Repeat CT scan of lungs and more function tests in October.

    Rheumatology dr has agreed to take me off of the prednisone but I have to come down to 5mg for 3 weeks then off since I have been on it for four months. Still getting blood work every month because of the CellCept but not really having any issues other than the occasional unexplained bruise.

    I probably should take some time to explain what Sjogrens is and how they came about determining that that was the particular autoimmune disease I have. Sjogrens syndrome is a chronic autoimmune disease where your immune system attacks your moisture-producing glands. Usually this is primarily in the eyes and mouth, causing dry, itchy eyes and dry mouth, cavities and mouth sores. Primarily found in women over the age of 40. In systemic Sjogrens it can affect any system, causing a myriad of symptoms so no two cases look the same. In my case, I had slight eye issues which became worse after diagnosis, probably because I paid more attention. My eyes actually are stuck together when I have to wake up at night to use the bathroom, many nights walking to the bathroom either completely blind or alternating which eye I can keep open for a millisecond. Dry mouth – kinda, I just didn’t know it – my mouth wasn’t dry but my saliva apparently isn’t normal saliva, it’s sticky (gross), which causes cavities ( and I’ve had a lot), heartburn and acid reflux (didn’t know it was part of it until later on but it is), difficulty swallowing, food got stuck in my throat, night sweats, Raynaud’s phenomenon (my toes would go white and hurt) and then of course the lung issues. Looking back on them now It’s like wow, how did the dr not know but it takes the right dr to put them all together and it takes the patient to speak up.

    As far as diagnosing, that comes from not only the subjective part (asking the patient about their symptoms) but also the objective part (what do you see) lab/test results/examination-my labs in the hospitals from all that blood work showed the +ANA that I had requested (antinuclear antibody test). The higher the titer number, the more likely you have an autoimmune disease. Mine was 1:640 with a nucleolar pattern. Pretty much greek to me but I know they use this to help determine the type of disease you might have. What really pinpointed to Sjogrens disease was the labs for the antibodies for markers called SSB and SSA Ro 52, these are key for Sjogrens with 60-80% of people testing for at least one. I tested positive for both according to the rheumatologist, and I also had a low rheumatoid factor. ding, ding, ding, we have a winner folks!