Saturday, November 23, 2024

119.8 - and Justice is 11.2, about 3/4 of a pound overweight. DH is such a softie with him. My bulk order arrived yesterday. Packaged very differently than my previous stuff because it came from a different pharmacy which I knew would be the case. It had all the stuff but not in the fancy box that Hallandale uses and the vials are different. I now have a year before I have to figure out what to do alternatively. I think I could use LillyDirect which would be $399 a month at my dose but I paid less than that for my purchase.

The cardiology appointment was somewhat less than satisfying and we aren't totally sure how worried we should be. The cardiologist is away so he saw the nurse practitioner who we have seen before and do not like. We really need to tell the cardiologist that we don't want to see her again. Last year when we saw her she blew into the room all frazzled, didn't introduce herself or state her role, couldn't find the pacemaker reports so didn't even give an update. This time she did say who she was and had the reports printed on paper but clearly didn't know how to read the data. She has this negative attitude and getting her to give information is like pulling teeth. She kept arguing about when the incident occurred which she said was at 2:00 am the night after DH felt it (at 5:15 pm). I even asked if that was the time that the monitor sent it and she kept saying that it was when it occurred but then suddenly said, oh did it happen just after 5 pm? And then she looked randomly through the papers and found some other similar instances. So at this point we don't really know how often it occurs because she was struggling with the papers. Bottom-line is that he is having episodes of tachycardia (NSVT). The one he almost passed out with was at 237 for 33 seconds. So she moved up his echocardiogram which was due in February and scheduled a stress test - both within the next 2 weeks. He also has to start taking a beta blocker. All the proper way to handle it but boy she is awful as she did not explain any of the reasons why. Hopefully we see the actual cardiologist next time and can communicate our frustrations with her. After reading up on the issue since she didn't explain any of it, it appears that it isn't terribly serious as long as there is no structural heart disease and stress doesn't aggravate it (hence the 2 tests). He passed both with flying colors a year ago so hopefully that is still the case.

Anyway, speaking of stress, our friends are getting ready to leave at 8 am (it is 7:30 right now). The 3 family members coming today arrive at the local airport at 11:30. So we have a few hours to get the bed and towels changed, swab the decks, then pick them up.

It is 48 this morning (it was 45 yesterday). It looks like a warmup starts tomorrow so by the time the others arrive in Florida on Monday we should be back to a sunny 80 degrees, much more pleasant for their visit this time of year.

Time to start getting our act together. Have a smart Saturday!

133.8

Liz, your dissatisfaction with the nurse practitioner sounds absolutely justified! Both DH and I see the same NP as our PC giver, which is just fine; she is everything a care giver should be. Now, when we need to see a specialist, then the Specialist is who we expect to see- not their assistant or janitor or whoever. On top of that I need to feel comfortable with them and trust their judgment and competence- most of all feel like I am the most important issue on their agenda at that moment. IMO that NP failed on every single aspect. Totally reasonable to ask that someone else be assigned!

Absence due to, well, I just don't know....I wake up in the morning and the next thing I know...the day is gone. Lots of things done, but nothing that amounts to much. Now that I think of it, isn't that the definition of daily living...hmmmmmm. Anyways, my best intentions (to post) tend to fall by the wayside. So much cool stuff going on round here. ****ly, I just love that totem! I cannot imagine just what it will take to mount such a structure. Quite amazing to think of the engineering experience needed to erecting such a piece.

Enjoy the day!

Liz, NSVT is the arrhythmia I have the most. Feel free to ask me any questions you or DH might have. 30 years of working in Cardiac rehab and having personally experienced heart arrhythmias since I was in my 30's and having a defibrillator since I was 42 makes me pretty well versed in the topic!

If the NP inspired confidence I would have been asking things like why does he have bradycardia requiring a pacemaker but also these episodes of tachycardia- are these electrical issues in a heart related?

My recommendation would be for DH to be seen by an Electrophysiologist, which is a Cardiologist that specializes in heart rhythm disorders. Not knowing DH's health history I couldn't really guess why he is having heart arrhythmias (slow or fast) but some common causes would be heart disease, heart valve problems, or cardiomyopathy (enlarged heart). Sometimes (like with me) there is not an identifiable cause. The echo he is scheduled for is a good start. That will show things like cardiomyopathy or valve problems if they are there. They might want to do a cardiac cath if the Echo is normal. Getting on the beta blocker is also good. I've been on one since my 30's when my heart arrhythmias started. They will help keep the heart rates lower and also lower blood pressure and can cause fatigue, especially in the beginning.

Thank you, thank you!

Very frustrating with the medical visit. Just reading what she said made me feel frustrated, and leaves a feeling of uncertainty. My 1st oncologist didn't inspire confidence, I never knew what was going on. I switched to a different practice, and I loved that doctor. Sadly, she left for a different system. They also said they were transferring my case to a physicians assistant, but I insisted I wanted to be assigned to an Oncologist. If I needed an Oncologist in June, I still need one in December. If they told me after x number of years, you switch, okay. But no one has advised that. The treatment plan was see an Oncologist every 6 months for 5 years. Getting close to being done!

Back from coffee and thrift store. Time to start cleaning, and I'm stalling. :) 2 weeks ago I thought about getting a cleaning service to deep clean, but it's so expensive here, and it's been hit or miss with quality. So with great optimism and ambition, I made the we'll clean it ourselves and we'll do a great job plan. I'm over it now, but we are not done. But the show must go on!

Having confidence in your medical team and being able to have a meaningful conversation with them is so important.

Agree! You have to consistently be your own advocate! I picked my Electrophysiologist for a reason so when they started having me see a Physician?s Assistant instead, I told them no, even though the PA seemed very competent and I?m a pretty easy case to care for. No shame in asking for the care you want!

148.4. Up a little. Still feeling a bit dehydrated. Woke up with a headache the last two mornings. Tomorrow night will be split dose injection day again. So far I think I'm liking it. Seem to have more even appetite suppression (I don't have days that I physically can only eat 600 calories) and food noise is consistently quieted without me feeling food repulsion.

Had the pizza birthday party today. I ate 2 smallish pieces of thin crust pizza and had one bite of DH's serving of birthday cake. Drinking a Fairlife for dinner as we had a later lunch and have to leave for the comedy club by 5:30. Might get a snack there if I feel hungry. They require a 2 drink and/or snack minimum anyway!