Chapter 9: New Twist.

On Mon, Dec 9, 2019 at 10:28 AM robn wrote:

Two Forty Five Thursday morning, December 5th, Dave awoke with a feeling of pressure in/on his chest. It was not painful. It would not have seemed worrisome except that any and all new symptoms are not to be taken lightly when dealing with Leukemia and Chemo – plus, of course, there are constant messages warning that anything of the nature, regardless of other issues, warrants a trip to the ER.

Nevertheless, we called the clinic and were, indeed, directed to go to the ER. He got up to do so, and found the past week’s lethargy and shortness of breath greatly reduced. He felt better than at any time during the past week! Shades of his first trip to the ER when he walked in feeling good and with no fever but with the white blood cell count in the stratosphere. So, despite feeling good, we dutifully took a Lyft to the ER or rather the ED as they call it now.

None of television’s dramatic promptness. Explain symptoms to admit clerk, show ID, sign papers, have a seat. Bounced off the seats as his name was called. Got vitals taken, answered questions, walked to the back of the department to room 14. ER doctor came in and repeated the questions. The head doctor came in and repeated them again. Other specialists came during the ensuing hours to ask yet again.

An EKG was ordered and yet another CT scan and I wish I had been taking notes because I sure don’t remember all the different things they did. There were a lot. Blood test for residual heart attack telltales – negative. Another CT 4 hours after the first for comparison’s sake. Etc.

Unfortunately, they found lung clots. Pulmonary embolisms. Several. And more clots in the leg – the leg clot was presumably where the lung clots had come from. Hematology, Oncology, Cardiology, Neurosurgery, Pulmonology, (and I think some others) were all kibitzing with the ER doctors. Lung clots are normally treated with blood thinners. Period. Simple. Out, finish. At least in cases that are not more severe. The blood thinners do not actually do anything to break down existing clots but work, instead, to ensure they don’t get bigger nor joined by new ones.

But not so simple in his case. Blood thinners increase the risk of the hematoma bleeding again. However, the clots are far more threatening to life than the bleeds, and there was evidence that the heart was being strained by the back pressure, adding to the risk. And the hematoma was still healing nicely. The question was not whether to treat the embolisms, but how.

So for the forth time in two months he was admitted back into 8SA – into a fifth room since he occupied two different rooms before and after the craniotomy.

As usual, they had no empty beds at the time the decision was made to admit, so he stayed in the ER until one became available. In the meantime I took the shuttle back to Pete Gross House to pack and clean and dump the compost, check mail, pay the rent, etc. My packing produced 6 containers of stuff –more than I wanted to deal with by Lyft, let alone shuttle! Dave still did not have a bed and I didn’t want to take everything to the ER, so I waited at PGH until my brother, Seaton, could once again play moving van at 6:15 PM and Dave had, by then, been assigned to 8SA room 8430.

Dr. Dan Martin, hematologist, came to see us, saying that he had spent half an hour looking over Dave’s chart and wanted to be sure his summary of the history was correct. He had a basically good grasp but we filled in some gaps – like the fact that he was feeling sooo much better after the chest pressure incident.

Dave’s theory is that a clot or clots was/were robbing him of a great deal of oxygen during that week but that at the time of the pressure, they moved to a less compromising position, freeing up access to oxygenate the blood. They all seem to agree that this is a plausible explanation.

But, just because he feels so much better does not mean that the danger is over. They started him on a low dose of IV heparin keeping a sharp eye, through frequent blood tests, to be sure that the level did not go higher than necessary in order to reduce the risk of a new bleed in the hematoma, while still being therapeutic. But, IV heparin is an in patient treatment. What to do when outside? After spending an hour or so discussing options and symptoms and risks, etc., he said he would sleep on it, do more research, and cogitate as well as consult. He would probably be back around 11 the next morning.

We didn’t see him until around 3:30. He again commented that Dave’s was a tough case, a tight rope walking challenge. But he had decided to recommend a relatively new drug, Eloquis (Apixiban). He felt the risk of a bleed would be acceptable – as low or lower than the alternatives. But since it is taken twice a day 12 hours apart, 9 AM and 9 PM seemed a good time. So he is staying on the heparin until 9PM and then switching to the Eloquis. We will then wait a while to see if there are any negative repercussions, before heading home for the last few days before round three of Chemo.

In the meantime we have been continuing to tackle bits and pieces of the mountain of research we want to do. And walking laps. 1 1/3 miles Friday, over 3 miles on Saturday. Sunday, he wanted to do a mile but we got interrupted after 3 laps and then again after another 4. Then made it – a full uninterrupted mile. Total 6 1/3 miles in 3 days. Sure is good to have him feeling so well! High time to have that at home! I went down to radiology records for a dvd of his test results. They didn’t fit on one, so they gave me two plus all the write ups. Since I didn’t bring the DVD player, viewing will have to wait, but I’ve been attempting to read the write ups in the meantime. Then one of the Doctors showed us the most recent CT head scan (when we asked) and it sure does look a lot better than the pre and post surgery scans.

Coming up in those next few days we have an appointment with Dr. Levitt to revisit the option of an artificial embolism in the brain bleeder. We were thinking that perhaps we should not have been so quick to celebrate not needing it. After seeing how well the hematoma has improved, (assuming we are understanding what we are looking at), and despite the headaches, we are not regretting the decision. But given the clots and the blood thinner, we are open to rethinking it.

Discharge planned for Sunday afternoon. Since the pressure that brought us in, the headaches had been very negligible, and the fatigue and shortness of breath gone. There was an appointment with Integrative medicine to talk about what is available among other disciplines – like acupuncture, meditation, etc.- on Monday that we wanted to keep. This appointment is only available out patient and we have been spending so little time out that it has not yet happened.

Well it turned out that it had been cancelled when he was readmitted so that reason for discharge was gone. And then – another headache. And a very minor rash. They both failed to become a cause for concern, but we were glad they occurred before we were home alone. A nurse who used to work in neurology and has much more familiarity with CT scans was asked to show us more and gave us a great tour through the scans. Her tour was very convincing regarding how well he is doing and explaining that recurring headaches should be expected for weeks but will probably end eventually. Nothing to worry about unless they become too strong or frequent – which, of course, is always the unknown qualifier. How strong, how frequent is too much? Still, it was very reassuring.

We did postpone discharge for a day due to the headache and rash but Monday morning, with no new developments, the paperwork has been put back into motion and we plan to leave this afternoon for a brief stay outside before Chemo round three on Friday.
We met a fellow patient doing laps. A young woman of 27 airlifted from the tri-cities due to a leukemia related emergency with her lungs. Her husband did almost all the talking as she spoke only Spanish. I don’t know how much she understood, and maybe she was only too shy to try English. There was something about her expression that made me ask if she was neutropenic. No. In that case, would it be okay to offer a hug? He said yes. I held out my arms and she sank tearfully into them. We were doing laps in opposite directions and every half lap as we passed we would hug again. That’s a big part of what’s wrong with this world – not enough hugging.

Virtual hugs to all of you.



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