Day +4958: This is just an ordinary day…

“…Wipe the insecurities away…”

I wish things where that way.
Karen’s Thursday Johns Hopkins visit went in many ways like Monday and in some important ways not at all.

The plan is travel, blood draw, doctor visit, and if needed off to the Infusion Center, travel home.

Wrinkle one was, just prior to getting on I-95, she told me she felt like she was going to pass out. That little statement started a mental planning session of Emergency Rooms in route… first priority is to avoid Upper Chesapeake, than comes the span of coverage Franklin Square (95 to the Baltimore Beltway), the 95/895 section is Johns Hopkins Bayview, once on Moravia Road it’s John Hopkins Main Campus. Fortunately, no side treks or ER stops were required after all.

The second wrinkle is once at the hospital, Karen needed a wheelchair to get from the parking garage into the hospital – which is a normally a one floor trip. Probably could have walked but a fall with the current blood counts has a high probability of being fatal. The wheelchair comment fails to emphasize the level of her current stamina and steadiness. Throughout the whole of the 2010 transplant years of treatment after – a wheelchair wasn’t required.

“… I’m that voice you’re hearing in the hall
And the greatest miracle of all …”

We followed the usual procedure COVID screening through Security, then the stand-alone console check and into the common waiting for phlebotomy and doctor visit.
Karen quietly said, “I’m going to pass out.” So, I barged through the sacred doors to the vital sign stations and exam rooms and interrupted the first tech who was treating a patient. Hopkins techs and nurses are super. Karen was quickly collected, BP taken (it sucked) and quickly shuffled off to see Meghan, our CRNP. After a small eternity, Karen bounced back, and we reentered the phlebotomy queue. (Yup, really skipping the details.)

“…Gimme an F! F!..”

The conversations with the doctor, or in Thursday’s case The CRNP, have a very theoretical and/or ethereal quality to them until the blood counts hit the computer screen.

Yup gimme that F.

Platelets 14 (normal 150 – 300). Ok, the equivalent of Dr. ‘hugs and kisses’ and off to the 2nd Floor infusion center ( Megan, our CRNP, is extremely competent and practical at the same time). Our nurse, Heather, took care of all of Karen’s needs during the infusion process, platelets and saline, blankets, BP …crap BP 102 / 50.
Consult Megan. Another BP 107 / 56. So, the clock ticks as the saline drips.

“…I know you’re in there, you’re just out of sight
Time passages…”

The little process from departing from home to “are they going to admit Karen tonight or sent her home” covered seven plus hours. The post infusion blood work showed that her platelets count had only risen to 28 (Monday’s post-infusion count was 68). This was for us a bit alarming as well as disappointing. However, following ‘catch and release’ protocol the decision was to let her go home with the Hopkins Urgent Care numbers in my hand.

End Thursday. Hello Friday. Hello October.

“…What goes up, must come down
Spinning wheel got to go round
Talkin’ ’bout your troubles, it’s a cryin’ sin…”

Unfortunately, the converse can be true as well. During the years of fighting taste issues from the various treatments – we have had our last ditch resort of mixing a concoction of vanilla Ensure High Protein, chocolate Carnation Breakfast drink, chocolate and vanilla ice cream in a blender full of ice. The objective of the ice is chill the mix since cold seems to be less offensive to the taste buds than warm. The contrasting flavor choices is to mute the overall flavor of the mix. Usually all people hear is ice cream for meals; so being me, suffice it to say the color & texture of mixture going down ain’t very different from it coming up.

Karen did manage – much later – to eat almost 1/2 of a muffin with peanut butter and subsequently, a small bowl of elbow macaroni in 1% milk. Pain management and eating are challenges right now complicating the fundamental treatment for the disease.

“…In your head, in your head
They are cryin’…”

So, one of the things I glossed over in the Thursday discussion with the CRNP is that she ordered a CT-Scan. Karen and I always kinda find it funny that when medical personal are looking at the possibility of a stroke they never mention the word. Blurred vision? Headaches? Weakness? Speech? B But to be fair, Meghan is doing due diligence, hence, despite rather intense leg pains, nausea and weakness, Karen went to Hopkins Green Spring Station for the Head and Chest CT. No sign of stroke or lung infection. Virtue of MRI versus CT for diagnostic value to be discussed another time. CT is mercifully quick when your body is subject to a multitude of miseries.

Home again … the waiting.

Song lyrics. Six in the two day blog. Just a reminder that aside from trying to capture the mood of the moment, it was designed for reader to show ..hey Karen thinking of you without trying to find the ‘right thing’ to say. Look them up, if your memory is like mine. All in all just for fun.

Life goes on. To all travelers – best wishes.

Michael

3 Comments:

  1. I’m sorry to hear you are going through this. Get better soon. Prayers Lori

  2. I did recognize one song. Spinning wheel. Don’t know if that is it’s official title. And no idea who sings it. But I do like it. And I probably only know the words you wrote above. :/

    I hope Karen starts feeling improvements soon. I hate that you are both going through this difficult time. I love you both. Prayers continue.

    xoxoxo
    Cathy

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