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Showing posts with the label systemic mastocytosis

Another Hospital Visit

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I had another visit to Oncology at the University of Vermont Medical Center last week.  I had been up there a couple of weeks prior for some labwork which we discussed in this most recent appointment.   In the photo at right, it appears as though the hospital is empty but we found that the hallways being seemingly dark and empty was a bit misleading.  It was about 8am and my appointment was one of the first of the day so we expected the hospital to be rather quiet.  Most of the people we saw in the hallways were hospital employees.  I'm not much of a fan of waiting in lines so seeing the hospital being so quiet was good news.  I like being able to show up, check in immediately, and then quickly get called into the examining room. When we stepped into Oncology from the quiet and empty hallway, the waiting room was filled with patients waiting to be called in for their morning chemo. On the positive side, even though my health has been miserable this year, seeing all these chemo pati

Nausea and Everything That Goes With It

F or most of this calendar year, my primary health problem has been related to breathing.  For better or worse, that seems to be changing a bit lately. Throughout this calendar year, it seemed like my mast cells were not all that active in most of my organs (which had been typical for a couple of decades) but were now active/over-active in my lungs.   In some ways, it seemed like I traded nausea, gastro-intestinal problems, abdominal pain and even kidney and liver pain for the consistent breathing difficulties I had been experiencing this year.   This change was not necessarily a good change nor a bad change.  It was just something different.   Healthy people tend to take breathing for granted but, as one might expect, even the slightest breathing difficulties affect everything .  My breathing problems this year have landed me in the hospital and I've had O2 levels in the low 80s far too often (below 95 is a problem).   All those other problems that I explained above (organ involv

Trade Offs in Health

I am about due for another visit with my primary care doctor.  I saw her last month for my ongoing breathing problems that started with an ambulance ride to the hospital back in January.  My breathing was still terrible in August so she started me on a new drug and I'll be checking in with her again next week to follow-up on the effectiveness of this new drug.  When I saw her about three weeks ago, I was telling her that the worst of my horrendous gastro-intestinal problems seemed to have been traded for the breathing problems.  I was still occasionally experiencing the debilitating gastro problems about once or twice a week but the severity had lessened and the frequency had significantly lessened.  However, my breathing had become unmanageable and, if you can't breathe, you can't do anything.  I haven't been able to do much this calendar year as a result.  Far too often, I feel like a fish out of water gasping for air. On the rare day when I feel halfway decent, I at

Health Update

I had a medical appointment today to discuss my medications as well as some of my more bothersome current health problems especially my ongoing breathing issues.  The appointment went well, I suppose, and we added a new medication in an attempt to get my breathing issues under control.  I have another follow-up appointment in a month to see if there has been any improvement in my breathing. So, the main thing today was about my continued breathing issues.  Since my last bout of COVID, my breathing has been terrible.  I seem to be slowly...  very slowly...  improving but this has been a significant and debilitating problem for the past eight months. Consequently, I have been using my rescue inhaler two to three times every day.  My doctor would like to get this use down to no more than twice each week so I'll be starting on a corticosteroid inhaler, taken twice a day, as soon as my pharmacy can fill the prescription.   The general consensus is that my last bout of COVID has affected

Oncology TeleVisit

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I had my post bone marrow biopsy follow-up appointment with my oncologist today.  We discussed the biopsy procedure, my lingering pain at the site of the biopsy, my lab results and my current condition in a Zoom TeleVisit (seen in photo, at right) which meant we didn't need to drive to the hospital.  The appointment was in our living room.   First we discussed how I have been feeling over the past few months.   My oncologist seemed to be a little surprised that I am still feeling quite lousy since my ambulance ride to the hospital in January and that I am still having great difficulty in doing just small things for a couple of hours.  In order for me to do something for just a couple of hours (ie, grocery shopping, dinner with the grandkids, Kenzie's figure skating, Lukey's hockey, etc) requires planning and closely managing energy.  In order to do any small thing, I need to get extra sleep beforehand and taking extra medications for a day leading up to when we want to do

A Health Update

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I figured I would add a short health update here this evening.   I'm still waiting on some of the results from the bone marrow biopsy to come back but I think most of the results have come back at this point.  One pathology report is actually hidden from me and has been hidden from me for the past week which likely means there is something in that particular report that needs to be discussed (ie, not the best of news).  I meet with my oncologist again in three weeks, I think...  maybe in two weeks.  For some reason, the 18th of April is standing out in my mind though so it is probably in three weeks.  Naturally, until I meet with my oncologist, I will have no definitive answers.  Actually, I still may not get any definitive answers when I meet with her since we're (well, really our health professionals) still learning about this crappy illness.   That being said, there are some concerning test results that have come back since my biopsy.  Some of my numbers are worse than when

My Third Bone Marrow Biopsy

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W hat I realized very quickly yesterday during my third bone marrow biopsy is that the brain does a great job at blocking out most of our most painful experiences.  I thought   I was accurately remembering my two previous bone marrow biopsies quite well but I was sort of fooled by my brain doing what it does best...  adapting and protecting us.   As the doctor was digging deeper and deeper into my pelvis yesterday and the pain was getting unbelievably unbearable, a lot of my memories that I had completely forgotten from my previous bone marrow biopsies came flooding back in vivid detail. Apparently, the brain adapts to pain.  I've noticed this with my extensive spinal injuries as well as my everyday bone pain caused by my primary illness.  Honestly, for the most part, I don't really notice this constant chronic pain anymore.  It just sort of simmers there in the background.  I don't even remember what it is like to be pain-free.  I'm in significant pain everyday but my

A Terrible Start to 2023

The start to 2023 has been absolutely horrible and the next few months, at the very least, already promise to be just as stressful and rather miserable. Sheila's mom, known as Nan in many other blog entries here, has been struggling with Alzheimer's Disease for about four years now.  Over the past few months...  hmmm, I think it has been since summer...  she had dipped into end-stage Alzheimer's and is now in the hospital with a fractured spine and in the worst condition she has ever been in to date.   I'm not going to go into specifics here but this has been incredibly stressful for the rest of her family as one would expect.  She has been hospitalized for a couple of weeks at this point and I'd say she is just "surviving" now or "holding on"...  not "living" like we all try to do but just surviving one moment to the next. This is sort of like the body being on autopilot.  So, the past couple of months have been terribly rough for Shei

Weekend Plans Cancelled Yet Again

W e had plans to head out of town to Saratoga this coming weekend...  actually, tomorrow through Monday.  Lukey has a hockey tournament in Saratoga so that was our primary reason for this trip.  We also enjoy trips to the Adirondack Mountains anyway and there is a nice inn in Saratoga that we like so we immediately made reservations when we learned of the hockey tournament.   Actually, back in October, we made reservations at this inn within minutes of learning of the hockey tournament! Unfortunately, earlier in the week, I had a lousy night as well as a pretty lousy following day.  I was having great difficulty breathing again.  This was followed by some time spent in the bathroom.  The good news is that my health didn't spiral down into anaphylaxis this time but my health was lousy enough to make me want/need to stick close to home. Needless to say, I simply do not trust my health to head out of town.  The three hour car ride would likely trigger dangerous health problems.  Then

Breathing Easy Didn't Last Long

I awoke again this morning having difficulty breathing.  Yesterday was a pretty good day but the "good health" didn't last long...  only around 47 hours.   This morning's difficulty breathing wasn't what I would call a dire emergency nor did any other symptom(s) develop.  If one additional symptom had appeared, then it would have become an emergency.  My rescue inhaler seemed to help this morning so that is good.  I then took my usual morning medications and added an extra H1 Blocker into the mix.  So, that is two mornings approximately 48 hours apart that I awoke this way.  It is not the most pleasant way to be awoken.  I think this might be due to the long period of time through the night putting more time between doses of medications.  This would also be a sign that my mast cells aren't getting enough medications to stabilize them for longer periods.  Or, maybe a generic medication isn't strong enough compared to a brand-name medication.  Of course, my

Another Cancelled Event

W e had planned to go to Kenzie's figure skating dress rehearsal yesterday.  I had been feeling fairly well on Friday and Saturday so it was looking like I would be able to attend this event.   I packed up my camera gear so I could take some photos, dressed appropriately for a cold ice rink, and then we headed out to the car.  Within about five minutes of our drive, I started having breathing difficulties again.  I waited another five minutes to see if my health would settle down and then I told Sheila we should turn around and head home.  I waited until just before we got on the highway.  There is a roundabout there at the highway overpass so we just turned around at the roundabout and headed back home.  I wasn't feeling so lousy that I would need help so I felt I could stay home alone this time.  I told Sheila that she should go to Kenzie's figure skating event without me so she just dropped me off at the house and then hit the road again.  When I got inside the house, I

Two Steps Backward

O verall, I have felt like I was recovering fairly steadily over the past two and a half weeks since my emergency hospital visit.  There was a bit of seesawing back and forth but I took a couple of significant steps backward last night.  Today, I'm actually feeling as though I am back at square one which would be the day after coming home from the hospital. At dinnertime last night, Sheila and I headed to Shaw's to do our weekly food shopping.  I hadn't done this since before my ambulance ride to the hospital a few weeks ago so this would be the first big test of my current health and recovery.   Although the store is only about seven minutes away, I started feeling health problems coming on about halfway there.  It started with some relatively minor difficulty breathing.  I used my inhaler in an attempt to stay ahead of the problem.  Also, I "just didn't feel right".  I couldn't put my finger on what exactly wasn't right but I knew I didn't feel r