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Specialty Pharmacies

allianceRX

Specialty pharmacies are a joke, at least Walgreens is. For my weekly injection of Enbrel, they call me about a week out (I will have one spare injection in case they screw this up, and well they do), and try to arrange to deliver it. But what they don’t tell you is if you don’t answer one of their three phone call attempts, they will cancel your prescription. In my case I had been dealing with some cardiac issues and I actually ended up in the hospital. Long story short, I called them and they told me that I’m in a “no go”, status, which means they have to have their pharmacist review my prescription, reach out to my doctor and make sure it is medically necessary and then they will ship it, so I’m a while out until I receive my next shipment. This is such a freaking hassle and shouldn’t be this way. I’m not sure why they can’t make this easier for the patient. Why can’t it be shipped to the local store, or why is it such a game every time I call to arrange a shipment. For the first several months, I had to call them which meant not only did I have to deal with all the other issues going on, but I had to call them and jump through their damn hoops just to get a prescription.

Then there is the time, that I called, some guy answered, he asked for my name and date of birth, which I supplied, and then he said “Goodbye” and disconnected me and hung up. I called backed immediately and spoke to a different person who asked me the same questions and she quickly handed me off to someone else which was the wrong department. Go Figure!

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Hospital visit

My most recent visit to the local hospital was very eye opening. So we are in the middle of this “high contagious”, “deadly” pandemic and you wouldn’t know that at the local hospital. So when you come into the ER, the security guard stops you and asks you the standard COVID questions, and then sends you to the correct location in the ER. In my case I have no COVID symptoms and I haven’t been exposed that I know of, I was just having chest pains. Now let me explain the chest pains part so you have a better understanding of what is going on.

As I have alluded to before in other posts, I have Rheumatoid Arthritis and Fibromyalgia which are both autoimmune diseases and I take an weekly injection for the RA that suppresses my immune system, so first I like to avoid places like the ER cesspool of COVID and second, RA can attack the organs in your body, which is what is happening in my case. For the past two months or so, I have been having elevated resting heart rate (like 120) and high BP, plus heart palpitations and chest pressure. I have seen my family practice docs and been referred to a cardiologist, but I’m playing the game of waiting for them to get around to calling me to set up an appointment. In our area, most of the specialists are not seeing new patients.

So here I am at the local ER (we have two hospitals in town). I got past security and I’m now at the little computer to enter in my information. The very first screen states that if you are having chest pains or other heart attack signs, skip the registration and see the nurse. I do just that, only to be told to please continue filling out my information. I do and I’m assuming they will take me back right away, but I’m just standing there waiting. I wait for 4-5 minutes and then they call me back to the triage area. There they check my vitals and then take me back to the fast track to draw some blood and other labs.

The young nurse had a difficult time tapping me for an IV and was just digging around looking for the vein (which I now have a rather gnarly bruise from). She then switches arms and puts it on the underside of my forearm for some reason. Now, I have to have quarterly blood tests for my RA medication so I don’t normally have issues with someone finding a vein, but we move on. I now have the IV on the bottom of my right forearm and I’m off to X-ray. I wait in the X-ray waiting room and then they take the chest X-ray and then kick me back out to the main waiting room.

I just don’t understand their logic and flow here. So let me see if I understand this. Let’s give you an IV and take your vitals and then put you in the “general population” again. It is a little misleading if you are trying to judge wait times, which by the way, are claiming to be 10-15 minutes. So I’m sitting out in the main waiting room with my spouse. We are just waiting, we waited some 3 hours (good thing I wasn’t having a heart attack).

As we are hanging out, I scan the room and I notice that a fair amount of patients have the wrist band and IVs, so they have been triaged, we must be waiting for the main ER. A guy comes out of the restroom, which is right around the corner from us, he is coughing his lungs out and all I could think was, please don’t have COVID, please don’t have COVID. He walks within 4 feet of me and my spouse. I mean he was wearing his mask and we were wearing ours, so I’m sure we are protected from COVID and a nuclear attack at the same time. He goes to the vending machine, which is 15 feet in front of us, still coughing and grabs a Coke and then coughs and talks to the older lady sitting next to the vending machine. He is bitching about the other hospital in town.

He then goes and sits in the general population of those that don’t have COVID. He then starts to very loudly talk to a lady a few chairs away who is bitching about the wait times. She claims she has been waiting some 5 hours now. He then very loudly exclaims to the entire waiting room that we should not go to the other hospital as they wouldn’t see him. He said that he is COVID positive and they refused him, he nearly passed out so he got into his car and drove to this hospital and proceeded to lie about his COVID status and made it to the main waiting room. Ugh, so here he is spreading his germs around, thank you for being that asshole.

The one thing that I noticed is that I’m not seeing any COVID protocols being followed. There is no one cleaning anything, the three plus hours we sat there, I never saw one person from house keeping, not one thing wiped down, hell the dust and trash under the chairs is from weeks, maybe months of not being cleaned. But at work, we have someone cleaning door handles and common flat surfaces every few hours. Go figure.

They finally call me back and take me to a cardiac room and then it is like I’m about to die, they get the Nitro going, they get the aspirin going, all that stuff that they didn’t care about for the past three hours. They took my temperature for the first time as well as they skipped that when I entered the ER for the first time. They had problems getting an accurate temperature, which they blamed on the old temp probes. But often patients with RA run a lower body temperature, my normal is about 95.6 instead of 98.6.

I saw the ED doctor, who wanted to make sure that I knew he was smarter than I am and didn’t want to hear me talk, he just wanted to impart his knowledge. Which BTW, was not anything new to me, I have studied this before, but he is a PHd, so I must be smart. Explaining to me that I’m not having a heart attack and so on. Now, let me state that I didn’t go in stating I was having a heart attack. The button said chest pains and I’m having chest pains. The button said rapid heart rate and I’m laying in the bed and have been for an hour and my HR is 117. The button said uncontrolled high blood pressure, and I was, it was 157/117 while again resting for the past hour plus. But by all means, please explain to me what I’m not feeling.

He was so arrogant that it started to piss me off. He’d ask a question and then when I got to answer it, he would cut me off and start speaking again. I’m sorry that is not a very good bedside manner doc, but whatever. BTW, if you want to challenge me to a quiz off, about a wide variety of topics, I’d be happy to educate you on the real world. But I move on as that is not the topic here.

So I’m then told that they want to admit me and I’m fine with that, I was already prepared for that actually. I’m really dreading this entire visit of hurrying up and waiting Olympics.

So they admitted me for the night for observation and then tests in the morning. I was very shocked at how nice the rest of the staff is at the hospital. Now I totally understand all the BS the ED staff has to put up with, but you can’t treat everyone the same, that is just not fair to them and to you as the provider.

I got to the observation wing and they got me settled very quickly. My nurse for the night was a total train wreck, but she was very sweet and friendly. By train wreck, I mean that everything she tried to do failed and she needed assistance. But I didn’t get upset, I just figured she must have been new to this game (later I found out that wasn’t the case, she is just a train wreck).

I was too late to order dinner and of course the hospital never thinks about that, they just don’t care. But when I asked, I was told that they can get me some sandwiches and juice, and that worked perfectly well. I was told nothing after midnight, so that wasn’t a problem either.

That night was fairly sleepless with constant interruptions for vitals and blood drawls to check my Troponin levels. I’m talking 11:22, 12:38, 1:09, then 4:44 and 7:10, so not terrible, but rather annoying. But I’m not one to complain, they are just doing their job. At the 7:10 “wake-up” I met my nurse for that shift, and he was really cool and down to earth. I like that in a nurse, he is straight up, period.

At 8:20 I was given my first injection of Cardiolite or Technetium (99mTc) sestamibi which is the tracer agent they use for nuclear medicine imaging (Nuclear stress test).

By 10:00, I’m in the nuclear lab, laying on the table as the Nuclear SPECT (single-photon emission computerized tomography) camera travels across my chest to obtain the images of my heart at rest. After that, I’m taken to the stress test lab for my stress test. You can learn more about a nuclear stress test here (https://my.clevelandclinic.org/health/diagnostics/17364-pharmacological-nuclear-stress-test)

Since I had surgery in my knee in 2020 and it was not 100% successful, and has been very painful lately, I made the mistake of opting for the Lexiscan injection instead of the treadmill stress test. While I’m waiting for this test to be administered, I’m having a nice chat with the nurse who is connecting up the monitors and telling me what to expect. I find out that she was once married to a Marine, who sadly (but not shockingly) screwed her over and cheated on her. I let her know that not all of us Marines are the same, many of us are good guys. It was refreshing to have a chat with someone as most everyone I had run into at the hospital was quick to do their job and move on. She took the time to talk with me, while she was doing her setup.

For this type of stress test, you are on a bed connected to monitors (Blood pressure, EKG, PulseOx, and I’m injected with the Lexiscan® (regadenoson) injection. This injection will basically simulate the heart as if it was being exercised. I was told that I might feel warm, flush and have difficult breathing and that I need to communicate what I’m feeling. The test will last four minutes and half way through they will inject another round of Cardiolite into my IV for scans later. The PA told me that the reversal is caffeine and that once I drink the Coke (I got to choose my caffeine source of choice) the effects would reverse in 10 seconds. Yeah right, but ok, I’ll play.

I’m kind of dreading this, but let’s pull the trigger and get the show on the road. I get the injection of Lexiscan® and I immediately feel my chest getting very warm, in fact it gets rather hot. I then start to feel flush and I’m having to breathe deeper as well. They then inject the second round of Cardiolite and I immediately feel so much worse, hotter, very faint like I’m about to pass out. The sounds in the room are getting muffled and I thought for sure I was going to pass out. I’m then told the test is over and I’m sat up and given the Coke. I take a sip and bingo, I start to slowly feel better. I finished the baby 7.5 ounce can and I feel like I did prior to the test.

I’m disconnected and wheeled back to my room. I’m told I can order lunch and eat and then I will be taken to the Nuclear lab again for the last set of scans. I got back to my room and sure enough, I was able to order food. I found the food to be ok, but very much lacking. I don’t mean lacking in taste, that was ok, I mean in portions. I ordered pancakes (two of them), scrambled eggs, a blueberry muffin, 2% milk and Cheerios. What I got was everything but the pancakes. But when the food arrived it was time to go for round number two. I had enough time to call and request that my pancakes please be sent up. They assured me that they were on the tray. So I guess I’m blind now too.

Off to the lab for the next set of scans and the tech had major problems with my monitor leads. She had to stop the test about eight minutes into the nine minute test to fix the leads. According to the monitor my heart was either beating 75, 44, 29 or 0 beats per minute. I even joked with the tech, saying “great you killed me”. This is not the first time that they had problems with the leads, in fact, the ER put a set on, and then they put another set on. When I go to the observation ward, they put another set on (leaving the previous two sets on). They had problems throughout the night so they put one or two on here and there, right next to the other set. Back in the nuclear lab and she put on two more leads and we reran the test.

Back in my room and I see another tray of food, sweet my pancakes have arrived. Open the lid and well, scratch that my mini pancake has arrived. Are they serious, this is a pancake, for a two-year old?

Alright I finally start to eat and my doctor comes in, this is the first doctor I have seen since I left the ER. This is my cardiologist that I have been trying to schedule an appointment with. He is so apologetic about this and told me that he has had a talk with the new patient coordinator about this. This just happens to be the cardiologist that I saw in 2017 when I was in the other hospital when I thought I was having a heart attack and so did the ER. I clicked with him so I’m glad to see him as my doctor. He spends 25 minutes in my room talking to me, sharing and he is very knowledgeable about RA and Fibro and how it interacts with the heart. I was very impressed and even confirmed the scarring on my lungs and said he can see it on the x-ray and hear it as well.

He tells me that the palpations I’m feeling are PVCs, where the lower chamber beats before the upper and there is no treatment, but can be related to those with RA, Fibro and other autoimmune diseases. The tests all look good and he thinks that the high HR and BP are POTS (Postural orthostatic tachycardia syndrome), which is again related to autoimmune diseases and he prescribed me something that should help. He couldn’t apologize enough for them not getting me in soon, and has an appointment for me this week. He apologized about the guy in the waiting room and talked with the hospital admin about it and recommended that my spouse and I get tested later this week (we already scheduled PCR tests).

I’m relieved to know that I’m not having a heart attack and though serious, when treated POTS is not life threatening. So I need to get my prescription filled ASAP. I also have an appointment to see him in his office later this week.

The rest of the visit was fairly uneventful. They gave me a dose of the medication that the doctor prescribed for me and it seemed to be working, it kept my vitals at 120/81 and 72 bps, so it seemed to be working and I’m happy about that. We will see what happens next.

One of my other observations was that though everyone was wearing a mask, I wasn’t required to be in my room and I only noticed the cleaning staff cleans the restroom once a day, which again, I found odd during a pandemic.

I got released just after dinner, which was an interesting experience. I was told that I was on a cardiac diet, which meant that I could only have items with the red heart after them. Much of the menu actually had the red hearts after each item, but when I called, I wasn’t allowed much of what was on the menu. No milk, no salad dressing, no soda, no pudding, I was shocked and a little upset as I had done the right thing and planned out my meal before I called, only to be told that each item I wanted wasn’t available to me, even though it has the red heart after it. Oh well, no big deal, I got a small grilled chicken sandwich, corn and mashed potatoes (even though I order a different type of potatoes), the only dessert that I could order was red Jell-O and the only drink was lemonade.

I got released shortly after I ate and I found it odd that once they handed me my discharge papers, I was allowed to walk out of the hospital, that must be a COVID policy, as I have never heard of that before.

Getting changed to leave the hospital, we removed 15 of the monitor stickies, several were stuck to my gown as well.

I’m happy to be home!
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Another diagnosis

Diagnosis

And the hits just keep on coming. In 2019, I was diagnosed with Fibromyalgia and my neurologist was convinced that there is more buried under the surface. In 2020 my Rheumatologist added to my list and diagnosed me with rheumatoid arthritis. I started a treatment right away that didn’t agree with me so I switched to a weekly injection. That is working well for me and I’m happy with the progress.

Several months ago, I started to get concerned about some cardiac issues that I had been feeling. I saw a ‘doc in the box’ and they ran some tests, the results of the EKG were concerning to them, so they referred me to a cardiologist. In this area of Virginia, it is very difficult at times to get into a specialist and this was one of those cases.

The referral got messed up somewhere and they got me in for an Echo and that was all. Several days later, I had enough and  tucked my tail in between my legs and went to the ER.

After some tests in the ER, they kept me for observation and gave me a nuclear stress test in the morning. When I saw the cardiologist, I was pleased to learn that I had seen him in 2017, when I thought I was having a heart attack (turned out to be a reaction to a new medication I was on).

He first apologized for the mix up in his office and promised me an appointment this week. Then he got a good feel of what I’m experiencing and then he told me his diagnosis. He said the “palpitations” I’m feeling are not actually palpitations and are actually Premature Ventricular Contractions (PVCs) which are extra heartbeats that begin in one of your heart’s two lower pumping chambers (ventricles). These extra beats disrupt your regular heart rhythm, sometimes causing you to feel a fluttering or a skipped beat in your chest. He explained that they are not life threatening and are more of an annoyance than anything else. He explained that they can’t treat them, but they can help lessen the annoyance. For me, they really interrupt my sleep, keeping me up at night as I often feel like my heart is dancing around in my chest.

He then explained that I likely have Postural tachycardia syndrome (PoTS), which  is an abnormal increase in heart rate that occurs after sitting up or standing. Some typical symptoms include dizziness and fainting. It’s sometimes known as postural orthostatic tachycardia syndrome. He explained that it is directly related to my RA and that they can treat the symptoms, but not the disease. He explained that it is an autoimmune disease (Yes, I’m so excited, another autoimmune disease).

The good thing is that I have to see a cardiologist and I have an appointment this week as well to see him in his office.

Wish me luck. I posted more details about my visit on my personal blog (AverageJoeWeekly.com).

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National Suicide Prevention Week

National Suicide Prevention Week

Suicidal thoughts, much like mental health conditions, can affect anyone regardless of age, gender or background. In fact, suicide is often the result of an untreated mental health condition. Suicidal thoughts, although common, should not be considered normal and often indicate more serious issues.

Every year thousands of individuals die by suicide, leaving behind their friends and family members to navigate the tragedy of loss. In many cases, friends and families affected by a suicide loss (often called “suicide loss survivors”) are left in the dark. Too often the feelings of shame and stigma prevent them from talking openly.

September is National Suicide Prevention Awareness Month—a time to share resources and stories in an effort to shed light on this highly taboo and stigmatized topic. We use this month to reach out to those affected by suicide, raise awareness and connect individuals with suicidal ideation to treatment services. It is also important to ensure that individuals, friends and families have access to the resources they need to discuss suicide prevention.

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Specialty Pharmacy

Walgreens Alliance RX

Time to reorder and this time around the Specialty Pharmacy called me, up until now, I had to call them and place the order, which well that sucks if you have brain fog going on and you space out and forget. Of course I wasn’t home to receive the call, so I called them back and I got to speak to Brian @ Walgreen’s Specialty Pharmacy and let me tell you this, Brian is not only great at his job, but he is funny on top of that. He basically did the whole phone call like a game show or infomercial  and it was a riot. And at the very end he read the disclaimer of about 45 seconds, all in one breath and at about 1 and half times the normal speed. And right before he was finished, he added the obligatory, “but wait there’s more…” Thanks Brian for that, I needed a laugh today.

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Road Trip

Welcome to Florida

I recently took a road trip to Florida (I reside in Northern Virginia). The first day I drove to the Georgia/Florida line and I was very stiff and sore that night. Let me tell you that 9 hours behind the wheel even with hourly stops is just too much for someone with RA and Fibro. A good night’s rest, some meds and I was off in the morning to drive the last 5 hours to my mom’s house.

I had a great time visiting Mom and my step-dad, and their little dog, got to see some of Florida before it was time to head back and make the long painful drive again.

The very last day was just a few hours behind the wheel, but it was the most painful yet. I was exhausted and my knees, hips, hands, elbows and shoulders along with my neck were in so much pain.

The worst part was the last day, I started to notice that I had an upper respiratory thing going on and in a world of COVID, that is not something you take lightly. I had a doctor’s appointment and it was “:stop the Enbrel and take these antibiotics and steroids for a week.  I appreciate the thoroughness of this, but I so miss my Enbrel. It is actually working for me and now I’m going to be so sore again until I can get it back into my system.

Here are a few pics from my trip.

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Nervous About This Weeks Injection

Enbrel Injections

I’m so nervous about this weeks injections. I have felt like crap all week and started to feel decent today and I have to take this weeks injection tonight. I’m thinking, but hoping I’m wrong, that the injections are what is making me feel so rough lately. I guess time will tell.

 

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What a Year This Week Has Been

Enbrel Injections
What a year this week has beenSo let me state this couldn’t be any more of a truer statement this week. I have had every intention of going onsite to work this week, but so far I have racked up telework hours. I’m sure it won’t be long until they tell me to come in or I will lose my job.
 
It seems like the Enbrel injections are working for the RA side of the house, but either the weather, the Enbrel or something else is causing a massive flare on the Fibromyalgia side of the house and then it looks like my Diverticulitis might jealous that the RA and the Fibro are getting all the attention. I can’t say for a fact that it is the Diverticulitis, it could be a side effect from the medications, just not sure yet. Everything I eat makes me super nauseated and upsets my stomach.
But it has been a very trying week. I’m just so thankful that I can currently telework, but I have to be on-site next week, no excuses.
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Men’s Health Month

Men’s Health Month

The purpose of Men’s Health Month is to heighten the awareness of preventable health problems and encourage early detection and treatment of disease among men and boys. This month gives health care providers, public policymakers, the media, and individuals an opportunity to encourage men and boys to seek regular medical advice and early treatment for disease and injury. The response has been overwhelming with thousands of awareness activities in the USA and around the globe.

Links
http://www.menshealthmonth.org/

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World MS Day

World MS Day unites individuals and organizations from around the world to raise awareness and move us closer to a world free of MS.
In 2009, the Multiple Sclerosis International Federation (MSIF) and its members initiated the first World MS Day. Together we have reached hundreds of thousands of people around the world, with a campaign focusing on a different theme each year.
MSIF provides a toolkit of free resources to help everyone to take part in World MS Day. Anyone can use these tools, or make their own, to create positive change in the lives of more than 2.3 million people around the world.
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