Saturday, June 12, 2004

 

Okay, let's see...where was I?

    Ah, yes. Her PCP and I discussed my handling of this latest health crisis, specifically: That I took her off the lisinopril when I noticed her BP dropping below 100; my judicious use of furosemide; elevating her feet; the other details I've mentioned in previous posts. I am pleased to report that he told me I handled it "exactly right." He explained that it is "not uncommon" for Ancient Ones with health profiles similar to my mother to have periodic, unexplained swelling of the feet and ankles for short periods. Her last swelling occurred in September of 2002, just previous to the unfortunate blood pressure crash brought on by the prescribed administration of Prednisone and furosemide to counteract the swelling. We discussed her prescriptions, how I was handling her medication, he okayed everything I was doing, renewed some prescriptions, put others on hold. The nurse came in to take a few vials of blood for analysis then directed us to the bathroom to fill a urine sample cup. As we were sitting in the hall waiting for her check-out print-out my mother proceeded to vomit up the Gatorade I'd had her drink between the time she lost her breakfast and her appointment. The nurse informed the doctor and suggested that she be immediately administered a "light" emetic shot, the doctor wrote us a prescription for metoclopromide 5 mg and directed me to administer it 1/2 hour before meals for the next few meals according to what I determined to be her need for it. I asked if I should give it to her that evening since she'd had the shot. Both the nurse and the doctor recommended that I should.
    At my query, the nurse recommended the B(ananas and, in my mother's case, broth, specifically chicken broth or chicken noodle soup)-R(ice)-A(pplesauce)-T(oast) diet at least that evening, to be continued if I deemed necessary. The doctor recommended that I continue her medication as usual. As we were entering our car the two clinic nurses came out, waylaid us and cautioned me to stop iron, potassium and furosemide until she could hold food down. "Oh," I responded, "so that's why she upchucked the Gatorade!"
    That evening, after shopping for this very specific diet while my mother napped, she ate at 1815. She was ravenous. I fed her some instant chicken ramen and some unsweetened applesauce. We lounged about, chatted, discussed the impending sale of our Mesa home, watched some TV. Around 2045 she headed into the bathroom to prepare for her nightly foot/leg rub and for bed. I called MPS to let her know how the appointment had gone. Just after I hung up, a few minutes after 2100, with Mom still in the bathroom (she tells me she "cogitates" in there), the police showed up at the door looking for her with the message from our PCP, who had attempted to reach me at 2051 p.m. (according to the voice mail message he left) that she was to proceed to the hospital immediately, she needed a blood transfusion. Although I was shocked, I gathered Mom together, checked voice mail, returned her doctor's call to assure him we were on our way. He told me he had called ahead and that her hemoglobin was "5", dangerously low, requiring an immediate blood transfusion to stave off a fatal anemic episode.
    The ER was prepared for her. The triage nurse told me that, yes, transfusion was a typical treatment for hemoglobin this low, however they would do an immediate blood test to confirm the results, as all my mother's other vital signs were "amazing" and she doubted that my mother was experiencing that severe a level of iron deficiency anemia. "This happens all the time," she said. "Iron deficient anemics are sent here based on the results of one lab test and our lab shows their hemoglobin is quite a bit higher than another lab came up with. Do you know which lab your mother's blood was sent to?" I did, and told her. "Oh," she responded. "We don't usually get bad results from that lab. But don't worry. Usually when someone's hemoglobin is 5 they are comatose and are delivered here on a stretcher. You're mother looks good." My mother, in fact, was protesting that she didn't need to be there and attempting to get up out of her wheelchair and walk out the door. Amazing woman. "Tough," as one of her attending doctors, the doctor I consider to have been sent to us by the gods, described her.
    Her hemoglobin was indeed in transfusion range, 5.6. Between the time that the CBC was done and the transfusion was started, my mother was a feisty, funny patient. Two doctors and two nurses, one of which was well and wonderfully beyond competent, a first class healer, attended her. There was the usual taking of history, declaration that she must surely be bleeding internally, stern recommendations that she be scoped and possibly pierced for a bone marrow biopsy (all of which I refused with equally stern and well informed judgments from her history) and those physicians who had previously consulted on her case throughout the last year and a half, the hematologist and the internist who performed her colonoscopy last July, were notified.
    The transfusion began in the ER and around 0400 June 9, 2004, she was admitted to a private room on the fourth floor to continue the transfusion. Initially it was determined that she would receive two units but by the time she was well into her second unit it was determined that she needed a third.
    She remained in the hospital through the morning of June 10, 2004, for observation and evaluation of the success of the transfusion. During this time a third staff physician, the one to whom I referred earlier as being sent to us by the gods, came on board. After soliciting my version of her anemia history he recommended exactly what I wanted to happen from here on out as far as treating my mother's recurrent anemia is concerned: Standing order blood tests every three weeks to a month for monitoring purposes and transfusions as necessary. For the rest of her life.
    Up until the morning of her release all the hospital personnel tending to my mother were vague about when she might be released. I got estimates of anywhere from days to weeks, "for observation and testing". All the tests which were mentioned were tests that The Doctor From the Gods (whom I shall henceforth refer to as "Dr. Gold" since, as I told his nurse who checked up on us yesterday on his behalf after we'd arrived home to Prescott, he is truly gold in a bed of iron pyrite) and I had already decided against. After observing several problems with her hospital care (all of which I will review in detail in later posts), despite the high quality of the nurses, CNAs and breathing technicians tending to her and after I got a good six hours of sleep, the first real sleep I'd had since before dawn Tuesday morning, I walked into the hospital Thursday morning determined to break her out. I advertised my determination to everyone on the floor involved in my mother's care and a few who weren't. I sought out Dr. Gold, who showed up a little after 1000. He told me that the typical drop in hemoglobin 24 hours after its raise through blood transfusion had not happened to my mother. Her hemoglobin had stabilized at the 9.+ to which it had been boosted the previous morning. While still a bit more than a point below normal, this was an excellent sign.
    Despite the six hours sleep under my belt I was still exhausted. Trying to be calm but beginning to leak tears, I explained to Dr. Gold, "I need to take her home and take care of her now. Look how dehydrated she is. This would not have happened at home under my care. Her blood sugar is out of control. This would not have happened under my care. The skin tears from the saline drip would not have happened under my care. I need to take her home so I can take care of her. Now. Not a day from now. Not a week from now. Now."
    He agreed.
    It was the fastest hospital release I've ever witnessed. A little after noon, after having gotten verbal follow-up instructions from Dr. Gold and complete, written follow up instructions from the discharge nurse including prescriptions and copies of all blood tests and comparisons performed on her during her stay, we were out the door and on our way to what my mother decided she needed before we fled the Valley, "a hearty lunch".
    My mother's blood sugar is back under control. Her skin tears are on their way to healing. I've relearned how to gauge her hydration level which is thankfully not at all troublesome as it was before the transfusion. She is well hydrated, well fed, high spirited (although still experiencing a few nicks from the bronchitis, which is fast coming under control), alert, comfortable and she looks like peaches-hold-the-cream, which is excellent. After a very slow day yesterday she is regaining her previous energy and gaining on that. Because of her bronchitis I've been successful at convincing her that she needs to be on oxygen a lot so she's had so very few cigarettes over the past few days with very little complaint. I'm thinking she might be close to quitting. Each time she "remembers" that she smokes, I remind her that she needs to give her bronchiated lungs a rest and, as well, create optimum body conditions to allow the transfusion to "do its work". She accepts these arguments each time she hears them with an equanimity that is startling. I guess it's true; the better you feel, the more likely you are to do those things that allow you to feel better. She is still awake at this moment, having been up since 0830. It's still taking me a good half hour to convince her to get out of bed but I'm not complaining.
    After her bath and breakfast we headed outside with her new walker, a boon from a dear friend whose wife, the user of the walker, died a while back. We experimented with its proper adjustment, how to secure her portable oxygen to it and how to walk with it. She likes it. She tired quickly, which I expected, but is enthusiastic about using it, which thrills me. She watched a movie, Passionada, had the bowel accident I've been expecting and subtly encouraging with lots of fiber and liquids since she was released from the hospital. She did not defecate at the hospital. Although she did yesterday, it wasn't much and it was difficult for her. So she's completely cleaned out. She's been doing crossword puzzles and reading her gossip tabloids with renewed enthusiasm. Crossword puzzling pretty much fell by the wayside over a year ago. She lost interest in her tabloids a couple of months ago. I've fed her lunch, administered her antibiotic, and now she is at the table in the dinette musing about a variety of things: The cat on the cable box; today's wind; what we need to "do about the yard". She's working herself into a nap, during which I'll be going to Costco to pick up some much needed supplies. I asked her if she might want to go, we could use the wheel chair, but she declined. Considering the busy-ness of her day today over yesterday, I didn't push. We have a full evening ahead getting ready for a short, impromptu visit from MPS and her daughter tomorrow and doing her hair. I fully expect she'll be up until late tonight, as is her usual habit, and we'll have an animated evening together. I'm happy and grateful and almost completely rested.
    I will be discussing, separately and in detail, several aspects of our experience over the last few days including:    She's down, with a cat poised to usher her through a healing sleep (cats are wonderfully suited to this purpose). I'm out the door.
    Later.

 

Blood out, blood in

    Jumping right to the end, on June 9, 2004, over several hours commencing at about 0200, my mother received a blood transfusion of three units in an attempt to bring what had advanced to severe iron deficiency anemia under control and reverse it. Medical science's experience is that this often works. In my mother's case it is certainly beginning to work. It will be necessary for me to cover the entire experience, factually and impressionistically, over a series of posts because she is awake much more of the time now, thank the gods and our species' peculiar habit of, generally, not waiting for divine intervention to solve problems. She is becoming more aware (with reservations, not sure if this is temporary), becoming more active (with temporary reservations; she's battling a case of hospital contracted bronchitis at the moment and the antibiotic tends to make her woozy) and certainly appears more robust than I've seen her since sometime in 2002. I have about 15 minutes before I awaken her. She's already roused herself once this morning but looked at the clock, noticed it was just past 0600 and decided that was an ungodly hour to arise (sick or well, she's never been a morning person). I agreed to give her until 8:30.
    The specifics are thus: On our way down the mountain to her appointment she vomited up her breakfast three hours after consuming it, as she had her dinner the night before after retiring and, as well, her dinner the night before that. Her feet were back to what I considered normal. We arrived early for our 1400 appointment with her PCP in Mesa. She was very weak but very determined. She wanted to walk into her appointment but I overruled her despite her griping. Her systolic blood pressure was above 110 (can't remember the exact number). Her diastolic was in the 50's. Although I was concerned, both her nurse and doctor pointed out that readings in these areas have been normal for her for at least the past four years. Blood was drawn for a CBC, CMP, Iron & TIBC and Thyroid Analysis. I presented her physician with list of her blood glucose readings from early April and the last 20 of her blood pressure readings (having found out, to my disappointment, the day before, that the wrist BP monitor I use only records the most recent 20 readings) and reviewed how I'd been handling her and what my concerns were about her most recent health problems including her temporary feet swelling, her extreme fatigue, her vomiting and her blood pressure drops below Systolic 100 and Diastolic 60.
    Ah, reconnaissance coughing, right on time. I'll continue...
    ...later.

Tuesday, June 8, 2004

 

We have an appointment...

...with my mother's Mesa PCP today at 1400. Coincidentally (or not, I think it may be something like the dentist phenomenon), the persistent swelling of her feet and ankles subsided nicely yesterday afternoon and has yet to return. Her blood pressure was still quite low last night and she is still weak and unsure in movement. Her feet remain pink and without swelling today as I view her still in bed. I don't know whether it was the actual prayer or the constant prayer that is my consistent and intense caretaking that helped the most. I have lots of questions for her doctor. I hope he helps me answer them. Of course, I'll report on the results of the appointment and where we're going, health-treatment wise, from here.
    Later.

Monday, June 7, 2004

 

I was finally able to complete my research, today...

...regarding from what my mother is suffering, now. It appears that she probably has developed acute mitral valve regurgitation. We've known that she has had mild mitral valve regurgitation since 2000. It has appeared to cause no problems and her doctors through the Mesa clinic have kept an eye on it with regular ultra sound exams, mentioned it in passing and considered it not worthy of treatment; so unworthy of treatment that I never bothered to research the variety of prognoses. At any rate, taking into consideration the sudden swelling of her feet and ankles, her alarmingly low blood pressure of late, her fatigue and weakness, I think her condition has become acute.
    I'll be calling her Mesa physician tomorrow, explaining what is going on and obtaining an appointment, hopefully within a day or two. I have all the tools to "control" where she's at with it, now, and have been doing a fair job of it. Unfortunately, my mother does not respond well to diuretics, as we know, and the last few days of me judiciously administering furosemide, well, as she puts it, "I've had better days." And, she has.
    I'm not completely positive that this is what is happening because when these same things happened in August/September of 2000 she was tested up and down and in and out at the hospital and no mention was made of the possibility of acute mitral valve regurgitation. Of course, they never figured out what she had. I attributed her episode to a blood pressure crash (which was, in fact, what she experienced, and I'm trying hard to keep the same thing from happening, now). Now I'm wondering if perhaps she is having episodic occurrences of acute mitral valve regurgitation. This time, though, I think I can prevent a blood pressure crash, simply because I am aware, now, of the dehydration factor, and very aware of how my mother responds to diuretization. It's been tricky. Her diastolic numbers have been running in the 40's and 50's. Her highest systolic number has been 112; she's been averaging around 100. I've been pumping her with sodium and potassium through diet as I've been administering the furosemide. Her appetite remains healthy. Since she's been feeling so bad, though, she only seems to respond to really delicious foods so I've been making treats for her, including blueberry cobbler for lunch today. Tonight I fixed a spicy tomato marina with sausage and lots of vegetables. It may have been too rich for her, though. She threw it up soon after going to bed. She usually only has problems with throwing up when she's being heavily medicated or is in severe pain. I know she's not experiencing pain so I guess this time it's the medication.
    We had planned on a routine visit to the doctor anyway. I had called Friday but I guess the office took an unscheduled day off. No one answered. I'm not worried about her ability to withstand the trip down or back up for that matter. I am concerned that her PCP might want to hospitalize her for observation. There is also the possibility that he'll want to see her more than once within the next few days. I'm trying to decide whether it would be best to go down and up or move back down there for a few days if hospitalization or multiple closely scheduled appointments occur. I'm leaning toward going down and up. We have almost nothing with which to live at the house in Mesa anymore and I'm in the process of trying to get rid of it. There's also the matter of the cats. Our financial situation is also quite tight, now, while we continue to own the mobile home. Firing it up for a week or two at this time is not a good idea. Very tricky circumstances all the way around.
    I'm also leery of having her "observed" in the hospital. Her last hospital experience at Banner Health's Mesa Hospital was not good. For that matter, her experience in the emergency room at Yavapai County Medical Center when I took her in for her back was not good. If she is admitted to the hospital, if I cannot convince her doctor to allow me to treat her at home for this (or, if it is impossible to treat her at home for this) I'm going to insist that I stay with her and will most definitely be keeping a close eye on both the procedures and medications prescribed for her as well as her general her treatment.
    I'm prepared for the possibility that this could be something else. I am prepared for anything. And I'm thinking like an attorney and feeling like a loyal junk yard dog.
    I just heard her coughing and checked on her. Although she's been down since a little after 2300 and it's been over an hour since she vomited, she's awake. She says she hasn't slept although I know she has. I've been checking on her every 5 to 10 minutes since I began putting the house to bed and writing here. She says she "feels fine". Sometimes, I swear, I wish she was more of a hypochondriac. At least she'd be familiar enough with her body to be able to describe symptoms to me whether or not they existed.
    I'm scared, too. She isn't. She has no reason to be scared. She believes she's immortal. I know better, though. It's not that I'm afraid of her dying. It's that I'm afraid of the possibility that conventional medicine will not treat her adequately and thoughtfully and leave me to pick up the pieces, which has often been the case. I don't know if I'm capable of picking up these pieces this time. This is what scares me.
    Touch her mitral valve. Calm it. Allow her body to reenliven itself. Take her by surprise, rather than letting her dwindle in the distracted care of the current medical establishment in the U.S. This isn't her style. It doesn't suit her. Let her be wearing and feeling her Sunday Best when she heads out this door. That's how she lives. Let it be how she dies.

All material copyright at time of posting by Gail Rae Hudson

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