Author: Carol

  • 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

  • Winter 2023/24

    With my next transplant evaluation approaching in a couple of weeks I think I am going to change up my writing style/format just a little bit just so I can get caught up a little faster. I’ve had some really strong feelings lately that I need to get my story jotted down and up to date before this appointment. I don’t know why and maybe it’s nothing – your mind can be very cruel to you when your faced with uncertainty. So I think I will try to go by seasons now and see how that goes. Just touching on “highlights” and maybe not so much detail.

    November, I am back on prednisone as my coughing has gotten bad again and my activity tolerance is worse. Although maybe I just need to increase my oxygen liters when I’m on my treadmill. I get up in the middle of the night often because my mind can’t shut off and a run across this while shopping for something for my daughters.

    “She finds herself awake again, all throughout the night – and when evening blurs into the morning sky, and still, peace is not in sight. The room is quiet but her thoughts are loud, her mind lost in the wild of her worries. Struggling in silence, she keeps waiting for the exhale, for her fears to part – but there’s a battle within her mind, there’s a war inside her heart. Taking a moment to pause, she allows herself to rest – regaining her peace and strength with each and every breath. Letting her chest rise and fall, she takes each thought in and slowly lets them go – realizing that grace can still find her, even if steady breathing is all that she can do. In this moment of clarity, she realizes that her anxiety does not define her – her worries do not hold her worth. Being okay does not always mean being alright. It’s okay to come undone, for it’s only in the darkness that she can discover the power of her own light.” I have this save on my phone dated Nov. 12, 2023. I remember many nights, even before I was diagnosed, I would sit up at night and in the quiet room, hear the crackling coming from the breathing. Then the anxiety would hit and the heart and mind start racing and it’s only when I reach out in prayer that I feel peace, a calm that comes over me, and I am able to finally get some rest – at least for that night.

    But November is the month for giving thanks, and so I shall. First, I’m thankful that I’m still HERE and still functioning fairly well. We did our annual family trip to Kraynak’s to see their Christmas tree land and then out to lunch, but I got food stuck in my esophagus and that’s hurts terribly, thought I was in for an ER trip so it was an early exit, we headed to the ER but finally I was able to relax enough that the food went down so the pain went away but that was scary, time to get that checked out! My oldest has Thanksgiving at her home as well as Christmas cookie decorating at the beginning of December. With all of this family time now indoors I decide to get the Covid booster. I’m not thrilled about it as there’s a little part of me that thinks that all of those Covid shots I had to get for work may have played a part but I can’t prove it so I decide, let’s try “one more time”. I get it on a Friday right after our cookie decorating session. The following Tuesday I’m not feeling so hot-well actually I AM feeling hot!, Wednesday I go to work but have to go home sick, I get home, draw a warm bath, light a candle and realize I smell NOTHING! a eucalyptus candle, held directly under my nose and I smell NOTHING! I already know what this means – order covid tests and have them delivered and sure enough, I’m positive. I contact my PCP, he orders Paxlovid only for the pharmacy to not be able to get it to go through my insurance. By evening, I’m getting scared because I can no longer make it to the couch from my bed without difficulty and I’m worried that if I don’t get this Paxlovid soon, I’m gonna end up in the ICU on a vent. I’m finally able to get the insurance issue resolved on Thursday morning. The Paxlovid causes horrible dry mouth and a metallic taste BUT that’s better than a vent- I’ll take it.

    I’m well enough by Christmas to have it at my home, which I’m happy about because I’ve been working on that “12 gifts project” all year, yes, I was able to finish it but there’s no way we can haul all these gifts. I’m also happy, because, again, there’s always this feeling in the back of my mind- that this just might be my last….whatever. (Fill in the blank, depending on the occasion)

    Middle of January I have another PFT/lung dr appointment, PFTs were worse so the Dr wants me to start on an antifibrotic medication but it’s expensive and has to go through insurance and then will have to go through a special program by the pharmaceutical company to help with the cost. He also will be calling the Cleveland Clinic for transplant evaluation. I will have to wait on insurance for both of these. In the meantime, I get to stress over the fact that I AM getting worse, scared out of my mind over the future, but I try to shift my mindset to maybe someday I’ll breath better again. And once again, I have to F.R.O.G. and let it go. But it’s SO hard!

  • 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.

  • Pulm fibrosis month

    September is Pulmonary Fibrosis awareness Month and although it’s not September when I’m actually writing this post, it is where I am in documenting my journey thus far so your stuck learning about it today. I’ll give some basic facts about pulmonary fibrosis, talk about the things I miss most, share some of my posts from that month from my online support groups and then challenge you to “breath like me”.

    Pulmonary – lung; fibrosis – scar tissue : so simplest definition is scarring of the lung. More than 250,000 Americans are living with PF and more than 50,000 cases are diagnosed annually. There are five categories of identifiable causes; enviromental, auto-immune, occupation, drug-induced and radiation induced. If a patient’s PF cannot be categorized it is placed in the sixth category-idiopathic.

    THERE IS NO KNOWN CURE but there are treatment options. Those include Oxygen therapy, pulmonary rehabilitation, medications, in some cases lung transplantation and in others, palliative care and/or hospice. It is a progressive disease, which means it worsens over time. As it progresses, everyday activities such as showering, getting dressed, speaking on the phone and even eating can make patient breathless. Showering and getting dressed already does that for me. Eating can if I do it too fast or eat too much.

    Common symptoms are shortness of breath, cough and fatigue. Scar tissue makes your lungs stiff. Stiff lungs are hard to stretch, so your breathing muscles have to work extra hard just to pull air in with each breath. Your brain senses this extra work, and lets you know there’s a problem by triggering a feeling of breathlessness or shortness of breath. The shortness of breath in turn can trigger a cough. Studies estimate that people with PF can cough anywhere from 200-500 times per day. Now imagine all that coughing and all that extra muscle work just to breath – now you understand the fatigue.

    I think the things I miss the most are things most people take for granted, being able to laugh without going in to what feels like a life threatening coughing fit, being able to sing/dance to my favorite songs while cooking/cleaning, being able to sing in my car on the way to work without sounding like I’m falling off a cliff or simply going for a stroll on a beautiful day without a care in the world, not thinking about where I’m going, how far I’m going, can I make it?, is it flat? how hot/humid is it? is it too cold? and for heaven’s sake NOT having to carrying around that oxygen. It’s a real love/hate relationship I have with it at this point.

    Throughout the month of September I weaned off of prednisone and then got my first cold/upper respiratory infection since being diagnosed. I had posted in one of my support groups that my diagnosis is ALL I can think about and it was the truth! Even though I felt about the same as I did prior to knowing what I had, maybe even a little better with the medications, I was totally consumed by it. I wrote “I struggled with some of my daily activities but I feel like knowing what I have and the prognosis has actually crippled me in a sense”. I went on to post when I got the upper respiratory infection that “being sick with this chronic illness is a whole different experience…kinda scary. Oxygen sats are still ok but I get to coughing so hard I get short of breath. And sometimes I cough up huge amounts of mucous all over myself, it’s disgusting! I’ve been doing pretty good, I just came off of prednisone after four months, I hope this doesn’t set me back”. A simple cold, and I was afraid! I was concerned that it was going to set me back and all of my upcoming tests in October were going to be affected.

    Now, my challenge to you. During Pulmonary Fibrosis awareness month the Canadian PFF came up with the Pucker Up Challenge.

    1. grab a drinking straw
    2. pucker up
    3. breath

    But don’t stop there. Now grab your laundry basket and try to do your laundry while breathing through that straw. Or grab your mop and try to do your floors. Or simple go for your daily walk. Lucky for you, you can take the straw out when it gets hard. The only thing I get is a 10 pound oxygen concentrator to strap to my back to carry around. The breathing doesn’t get any easier. And please, don’t get me wrong, I’m not looking for pity, maybe just understanding and a small amount of empathy of what life is like for me EVERY DAY! ALL DAY!

    Let me know what you felt, I would love to hear your experience

  • 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.

  • Nana’s broken heart

    Tragedy has struck (Sept 15, 2023) one of my greatest fears came to life today when my oldest called – thru her tears and controlled panic I was able to understand that our oldest grandson, K, had been in a terrible car accident and she was asking for us to come sit with the two youngest grandchildren so that she could join our SIL and be with their son. Honestly, this whole night is pretty much a blur. I don’t remember too many specifics, I just remember trying to keep two young kids distracted while praying diligently inside for their brother and their parents. Trying desperately to maintain a calmness on the outside while on the inside your heart is breaking.

    K had sustained an open left femur fracture which need surgery and had some bleeding in his spleen that they would monitor. He had a titanium rod inserted into the marrow portion of the femur along with plates and screws to hold the femur together. In the coming days however, he would need a procedure to stop the bleeding in his spleen. I think if you ever were to ask him he would say that was the worst part as he woke up during the procedure and says he could feel it all. How horrible

    I included this story in my own health blog for two reasons – 1) obviously because K is a special person in my life, he is the one who made me Nana but, 2) because I wanted to show the effect that this illness had on my ability to help my daughter and her family in a time of crisis. Because I’m at risk for infection I have to weigh the pros/cons of everything I do so I didn’t go to the hospital – my daughter said K wouldn’t have wanted me to see him that way anyhow but if I was healthy there would have been no question, Nana would have been there, at least ONCE. Because I get fatigued easily I didn’t have energy to sit with the younger ones after work, make meals, take care of their dog, Jett – NOTHING. I did absolutely NOTHING to help them out in their time of need. I felt WORTHLESS. And THAT made me ANGRY.

    Anger has reared it’s head from time to time before this because of this whole situation because I’ve done nothing to bring this on. I just happen to have an autoimmune disease. My OWN body is trying to kill me. But I also know that anger isn’t going to help so I HAVE to let it go because if I let it consume me then I let it win.

    Getting K home from the hospital allows me to let it go, to let the anger and guilt go. When I saw his smiling face my heart was no longer breaking, now it was mending just like him and I was no longer WORTHLESS – I was simply NANA.

  • 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!

  • Summer Adventures 23

    One of the things I’ve always liked to do is explore and it was one of the things I remember bringing up to the lung and heart doctors at my appointments that I was afraid I would have to give up – but they actually both encouraged me to continue to do as much of it as I could tolerate. The first time we went hiking – well, our version of “hiking” was July 22nd. B took me to Hinkley Reservation just south of Cleveland. Hiking now looked a little different; now I was equipped with a ring pulse oximeter, an oxygen concentrator in a backpack, a neck fan and a portable stool in case I needed to sit to rest and there wasn’t a convenient place to sit (that’s what B is carrying in those star bags {see pic2}, cuz this girl would NOT be getting up from the ground easily!) It was just under a half mile loop but the first half was ALL UPHILL, about 70 ft in elevation, and with this horrible lung disease inclines are the worst! I had to stop twice because my heart rate was in the 140-150 range and I just felt like that was too risky because my lungs can’t keep up with the demand anymore, even with oxygen assistance.

    In August, we went to McConnells Mill State Park in Portersville, PA. It was pretty hot and humid from what I can remember and once again a huge incline, this time it was on the way back to the car so B walked back by himself and brought the car down to me. They had handicapped parking down close to the mill but I don’t remember now if it was full or if we didn’t know about it until we got down to the mill. Not that it matters, what matters is we are still getting out and enjoying the things we did before, we are just learning to make adjustments. And if all goes to plan I want to walk in the PFF walk in Pittsburgh next July. I read about it on the Pulmonary Fibrosis Foundation website while doing research but I wasn’t in the physical shape to do it this year and I want to WALK it if possible.

  • End of June

    The end of June brought about some change and yet the return to normalcy at the same time. The lung dr reviewed my lung tests and showed that there was improvement in my FVC (forced vital capacity) to 2.11 from 1.70 back on 5/2/23, the day after my bronchoscopy. Forced vital capacity measures the total amount of air exhaled forcefully and quickly after taking in the deepest breath possible. A normal adult’s FVC measures between 3-5. But the improvement shows that I don’t need antifibrotics added to my treatment plan so that’s a plus!

    I saw a new PCP (primary care provider) and was released to return to work. This was such strange timing or was it God’s timing? You see, I had made arrangements to meet with this new PCP back at the beginning of April, BEFORE all of this went down, because deep down I knew I had something going on and my PCP at the time was “out of network” with my insurance. Little did I know then however that the timing of this appointment was going to line up perfectly with allowing everything else to fall into place – I was able to get up to the full dose of CellCept, get my needed portable oxygen concentrator because I couldn’t return to work on oxygen tanks, have the repeat lung test done and reviewed by the lung dr ALL before seeing this new PCP so that he could review it all and give me the release to return to work. But now I was also petrified to actually do it. I would be returning to the hospital immuno-suppressed now. I’m on a gazillion new meds. I have no idea if my body can tolerate 40+ hours of being away from home, I’ve been able to rest whenever I needed for the last 8 weeks…but you know what, I won’t know if I don’t try!

    The end of June also brought silence into my home. With my new immuno-suppressed state we as a family made the decision to move our middle daughter and her daughter to their own apartment. I know this is for the best and I’m happy for them too! I know they will love it. I can’t do much to help as it’s up three flights of stairs, but I still try, the family doesn’t let me do much. They are smarter about this then I am.

    Our youngest grandchild, C is more of a Papa’s girl because he got to stay home with her every day during the height of Covid so she’s all about Papa but she’s a bright light to my day and a distraction for me. And not to mention my daughter’s empathetic ear. The countless days she has just let me ramble. I remember the first night, they spent in their apartment, B and I looked at each other and said, “It’s too quiet”. And let me tell you when the house is quiet, your mind isn’t.

    The gazillion meds I was talking about!

  • June 8, 2023

    I can’t believe it’s been almost two weeks since I last jotted anything down. Let me see if I can rewind and sum up the days.

    The CellCept has been doubled and I added two more a day this past Monday to reach my final dose of 3 pills each morning and each evening, no real side effects and so far my blood counts have not been affected. PTL!!!:)

    I had my follow up lung function test on the 6th but Dr V is out of the country so won’t really know the results until next week. Some numbers were slightly better while others appear to be worse. Got my portable oxygen concentrator yesterday, this should give me more freedom than the tanks. Still have the larger one for home but honestly I can’t tell you when I last had it on. I’ve learned to just pay attention and stop and rest if I’m getting short of breath. I’ve been able to bathe/shower, do laundry, cook, vacuum and sweep/mop without it! So the medications have to be doing something!

    There are only two things that are still issues, my cough seems to be back but, we are also having air quality issues here d/t wildfires in Canada and I’ve been having some chest pain/insomnia the last few nights – I’m wondering if I’m low o oxygen in the night – I’m considering investing in a ring pulse oximeter that can track me at night.

    On a more personal note all of my living siblings were home this past weekend. I am the baby of eight, two of our siblings have already passed. They were home to celebrate our Dad’s 90th birthday and our parents 70th anniversary!! It was a good time but again it just highlights the things I can no longer do. I couldn’t even blow out a candle 🙁 I’m also hoping that the gathering doesn’t make me sick, I should have worn a mask. But I also found a side of me that has never surfaced before – a “me” that is starting to not care what people think. I had purchased a beautiful sun dress for our SC/Georgia trip but didn’t wear it because it was “too much”, “too fancy for me”, “would attract attention”. But for the party I wanted to wear it because I didn’t know when OR IF I will every get the appropriate opportunity to wear it again so I told myself even if it is “too much”, “too fancy” or “attracts attention” if you want to wear it then do it – WEAR the DAMN DRESS!