Sunday Stroke Survival: Update on Cardiologist

 

You know a couple weeks when I did my mini rant on my cardiologist? I thought to fire him. Don't get me wrong, I still may. But doing the heart cath just to placate me. He actually found something. Not one but two blocked arteries.

Maybe he learned something akin to how to listen to patients. Maybe some humility. But I doubt it. Guess he's right by his way of thinking I don't have a heart condition because he's already fixed it. but something wrong and he can't figure out what it. All week long he's been trying to puzzle it out. My blood pressure and heart rates are through the roof. Instead of making things better, they've gotten considerably worse, and my life is an awake H3LL!

After two stents were placed at the carotid arteries, blood flow should flow more freely, right? That the heart caths and stents are designed for, right? I have been home for a week and a day since they performed the cath on the 22nd. I spent the entire weekend after discharge in bed asleep having very lucid dreams. I woke my daughter one night saying I was in labor! I was on the verge of being taken back to the hospital by a very worried daughter, when I awoke Monday. On Monday, the increased dose of my blood pressure medicine and an additional blood thinner was ready for pick up. I went into the bathroom when I heard an all too familiar sound. It was my heartbeat. 

It was like a drum beating in my head and I started getting short of breath. I barely made to my dining room chair. I was wheezing bad. I looked at my desk confused. I couldn't Remember why I'd sat down there. 'Sit there and calm down. The air will come.'

I was still fumbled around with things around my laptop. Inhalers! That's what I was looking for. It's the first time in about ten years that I've had a full-blown asthma attack. It took me by surprise. Y'all know me by now. You know I listen to my body like a mechanics listen to an engine and it whispers speak to me. I know how my body reacts or should not react. Something was definitely off with mine. I remembered the protocol rescue first to open air pathways for the steroids to get into my lungs. It has been drummed into my head. Asthma is the only sign that I was a premature baby and it's been a major factor in my life my whole life. It's only been compounded with all my allergies recently.

Albuterol increases heart rates, so the drumbeat was back in my ears. I grabbed my pulse/O2, O2=93 and flashing 96, P 127. That explain the drumbeat. Whenever my

heart rate goes higher than 100 BPM. It vibrates the tiny bones of my inner ears and eardrum works in reverse echoing bodily sounds instead of outside noises like normal hearing. I'm not really sure how it does it or it does it for anyone else. I just know immediately when it does. I used to use it as a tool when I ran strips of V-Fib and was on medication for it years ago. I only used the pulse/ox monitor for him. I've been using it for to monitor my own low heart rates the past few years.

Maybe, whatever switch the neurosurgeons at Emory hit to reverse my BP and HR into low gear was tripped by the heart cath switched it back on. I'm second guessing here. I just don't know. It'd be nice to know what and where that switch was. Think of the medical implications. Maybe, God just said, "Honeymoon's over, kiddo.  Time to get back to life." Or maybe, I was put on this Earth to be Queen of Abby Normal to baffle medical folks. All hail the queen!

The problems is that the return of my high blood pressure puts more strain on my leaky, damaged heart valves. If I have a resting heart rate (sedentary, lying around with your feet up) of up to 127, can you imagine how fast it beats when I'm up and moving? Yeah, you get the picture. I feel like a pile of dog poo and I can't do much. No, I'm not saying all this for pity mongering nor from the self pity mode. Maybe, I brought another doctor to his knees. By throwing his attitude back in his face demanding, "You were supposed to make it better! What did you do to me??" It's humbling when for a god-complex doctor has to say, "I don't know." But honestly, I secretly take joy that I've made him a better man/woman for their next patient. 

All I want is I want to live this life the best way possible!

                                            Nothing is impossible.

Sunday Stroke Survival: Update

My Botox is in. I'm starting to get some relief of the cramping although actual movement and control haven't kick in yet. It will sometime in the coming days. I'll be calling Monday to set up my therapies again. I can't remember when I've been so excited about going. Imagine, seeing positive gains towards recovery!!

I know it's only temporary at this point, only lasting so long as the Botox is working, but the fact is, I'm meeting goals again other than just maintenance. Last time I managed 2 full minutes of standing, a full weight bearing, without my AFO before the spasticity kicks back in. It might not sound like much, but it's 2 full minutes of freedom after 12 years of my ankle and foot being locked in paralysis and/or spasticity. With support, I can sit, stand, and shift weight from my left and right foot for about 20 minutes without my AFO. It will take time to get new pathways rerouted in my brain and strengthen the muscles to combat the spasticity. 

Whew! It's been years since I've had any positive reinforcement to keep at it and hope alive for recovery. As I end every post with "Nothing is impossible," it is pretty tiring and almost trite to keep hope alive and stay positive. For now, 2 minutes of pre-stroke(s) normalcy is enough.

I had a mini nosebleed this week. In the wee hours I went to the little necessary room and noticed two small drops of blood on the floor. I reached for the toilet tissue to apply it to my nose. I also checked that a hand towel was in easy reach. The wad of toilet paper conveniently stuck in the blood to plaster it to my face as I applied pressure to the right sinus near the bridge of my nose. I was in the bathroom between my daughter and son in law's bedroom and mine, so I was within hollerin' distance of them. I kept waiting for the flow to either pour down the back of my throat or out of my nose. The seconds turned to minutes, it didn't. I gingerly remove the pressure from my nose and waited. Nothing. It had stopped on its own just that quick.

Needless to say, I didn't go back to bed. I sat at my computer for about three hours just in case it started again. I was terrified it would. Finally, as the birds outside began chirping and the skies lightened, I went back to bed. In the following days, no reoccurrence of the nosebleed. All I can do is raise my hand to heaven and say, "Thank you, Jesus!" It's nuts to have to live this way, but at least I know what the cause is not that really helps.

I had my visit with the vascular surgeon and the ultrasound showed a little more progression (ballooning) of my triple A (Abdominal Aortic Aneurysm). But it's still in the "wait and monitor" category. We talked about the swelling in my legs. He didn't think it was a vascular origin problem because diabetes was no longer in my mixed-up medical history. With my Hashimoto's diagnosis though, he thought it was more a lymphedema problem. A blood test was needed to confirm. They also scheduled me for an ultrasound of my carotid arteries. It's been a year since it's been done. 

My heart cath was done Friday. Nothing unusual was found or at least nothing stent worthy. He did have a look at my three leaky valves. Yes, he confirmed they were leaking. (Hurrah!) Maybe he's not that bad at cardiology. He talked to me about valve replacement to which I refused. I'm still looking for a new one.

Nothing is impossible.

Sunday Stroke Survival: Dangerous Abscess

On Thursday, I awoke and got out of bed as usual. Except I couldn't bear weight on my AFO clad foot without a knife stabbing like pain in my ankle. Where it bulged out a bit, I couldn't visualize it. My daughter was off from work because of catching COVID-O. She's been fever free for 5 days, so she wasn't contagious anymore. She was going to take me for my ultrasound of my triple A at the hospital.

There was no help for it, I was wheeled everywhere in the transport chair. When my daughter had looked at it and barely touched it with a yelp from me, she said it looked like cellulitis to her. I scoffed at her but still had her to draw around the margins with a Sharpie to monitor size of it. If it wasn't better by Friday, I'd ask my neurologist before my Botox.

By Friday morning it was worse. Definite heat poured from the area. The redness reached down to my toes and to about three inches above the ankle into the calf, but the abscess was still the same size. By my appointment time, the pinkness and swelling areas reaching my mid-calf. I couldn't fasten two straps on my AFO on my old AFO. Remember, it's 3" too big. There was so much swelling that I couldn't put my shoe on.

Anyhow, the neurologist came in and looked at it. Ignoring my yelps of pain from me as he pressed and prodded it. He said it wouldn't interfere with the Botox, so he proceeded. He recommended going to an urgent care or hospital ER to have it drained and be put on antibiotics. Rather than waiting for hours in the ER, we opted for a soc in the box. It would be faster. There was one less than a mile away. It was also sponsored by my hospital of choice.

The nurse practioner came in and examined me. She wanted to drain it and start me on antibiotics. She didn't think she'd get much out because while raised, it didn't feel too liquidity, but she'd try. We discussed a *caine drug first, or to go ahead and just do it. I opted for just doing it and getting it over with. Cold spray and a bit of pressure as the scalpel sliced the skin. It was done before a yelp could form on my lips. Then came the painful part, the squeezing to get the pus out.

"So much is coming out," she exclaimed. She'd changed position of her hands to squeeze more out. Then, "Oh!" My daughter who was helping hold my foot from jerking, "It got you."

The nurse practioner laughed, "It sure did, but we got it."  

I was thinking the whole time she was talking that she was talking about pus (infection) was coming out, so I asked my daughter when the nurse practioner left the room to find a bandage, "How much pus did she pull from it?"

"About an 1/8th of a teaspoon onto her scrubs," my daughter answered. "It looked like the core came with it too."

"Then what was she talking about so much is coming out?"

"That was bloody tinged fluid."

The nurse practioner came back in. Keflex or Bactrim?

Most definitely Bactrim. Keflex gives me a nasty vaginitis as a side effect. It was called into my pharmacy. I was told to come back for a recheck in 3 days which we'll do.

I was sore and bruising, but none the worse for wear.

Saturday was a strange day of the feverish type. I went from hot to freezing in my 76℉ room still unable to bear weight on the leg. My old AFO held in place by my swollen leg even without straps. Now, it's evening and my temperature is 100℉ by my digital thermometer. I knew I hit 100 even before the thermometer reading because it felt like my eyeballs were boiling in their sockets. My daughter asked what I did in these cases because I'm allergic to analgesics. I sit in a tepid bath. I couldn't do that here because we have no bathtubs in this house. The shower it was. It brought my temperature down to 99℉ so I felt better and got out.

The redness was back to my mid-calf too. My daughter's diagnosis may have been right, after all. Cellulitis. Well, the Bactrim should take care of it. Sulfur was used quite effectively during WWII as an antibiotic. Unless the cellulitis is MRSA based. The next twenty-four hours will tell me a lot since the pus wasn't sent to a lab.

If the redness and swelling do not go down some, I'll be hitting the ER for a stronger antibiotic. The site of the incision is still oozing a little bit but trying to heal. I imagine there can be some fluid caught on a swab to be sent to the lab with little trouble. Especially since there is no new cyst like raising to be had. In the mean time, it's back to bed for me.

Nothing is impossible.

Sunday Stroke Survival: What's Ahead

 I'm beginning to have doubts about my cardiologist choice of doctors, I had an inkling at our first meeting and now after my last appointment, that inkling has started to rattle inside. It's like you suspect there is something wrong with your car, nothing really major at first. It's just a suspicion until a rattling or vibration starts. Then you really know something is up. That's how I now feel about him now.

I moved up my appointment from the 15th to last week. I was that concerned about my fluid retention and the heart twinges I'd been feeling. Not really chest pain like angina, just little twinges that last maybe 2 seconds. These had the duration of 20 minutes to an hour. They occurred while I was not active or exerting myself in any way. I was concerned enough to move up my appointment.  I was puzzled and couldn't figure out. I needed to pick his brain as I had done in the past with my other specialists.

When I mentioned a possible link to my heart condition. He was like what heart condition. I reminded him of my status post MI. the stent placement, and three bad valves in my heart thinking he hadn't reviewed my chart before coming in. Unbelievable but understandable in a busy practice. Tech did run a 12-lead EKG after I was put in the room. He said, the stent fixed my heart from the MI, right? I nodded. What about my valves, I asked? Oh no need to be concerned over them. The nuclear study and echo showed only minimal leakage. The edema in my waist and legs? Oh, that isn't coming from your heart. As we age, he began. I halfway tuned him out at this point. He was speaking to me as if I were a child.

This irritates me to no end! I can understand trying to be helpful, but he was borderline of being condescending. He was basically telling me that I had no heart condition. That this visit was a waste of my time and his. All my other cardiologists were wrong and just stringing me along for the past fifteen years! Who would you believe?

He did placate me by scheduling me a heart cath on the 22nd to check on my heart twinges. He doubted whether he'd find anything. I was wondering if he'd be surprised like Dr Bolch was when he had to place a very large stent in my heart in 2005? He didn't think he'd find anything either. He was just placating my regular cardiologist who had seen me through four years of heart concerns. Not that I'm wishing for this mind you. I'm just saying. I know this isn't a Munchausen Syndrome type thing or anything like that. I know my body and listen to it. It may be time to interview a new cardiologist.

Conversely, I love my new endocrinologist! He took the time to read up on Hashimoto's before my appointment with me. To me, that's a sign of a good doctor. He wasn't afraid to say I don't know. We actually had a good chat and exam. He took time examining my thyroid and goiter. He even had me do a swallow test while he examined me. When I mentioned changes in my nails and hair, weight gain, he countered with questions about exhaustion levels and insomnia. He ran another complete thyroid panel and said I should have one done every three months instead of biannually to catch charges before the levels drop off severely. I agreed. He could fine tune it to monthly if needed. I read a NIH study that recommended this approach. This way we might head off the devastating effects of the spontaneous nosebleed symptom of this disease before it happens again and better sleep patterns. Proactive thinking, I love it.  

I was offered a way to live with this disease and not crimp my style too much. He gave me hope. It may not cure me, but at least it's a way out of my doom and gloom box.

What a difference a good doctor makes. I didn't bother my cardiologist with a referral to a vascular surgeon, I left that up to my PCP who I saw later in the day when I got the referral to an orthopedist for my shoulder. Of course, I got that referral too. As I said before, when I say refer me to a good doctor, I mean a doctor you would send your mother to. I'm looking forward to my Botox and getting back into therapies again. Onward we go to more positive gains. 

Nothing is impossible.

Sunday Stroke Survival: A Whirlwind of Doctors

 The last two weeks has been a whirlwind (think tornado) of doctor visits and tests. 

First up was my new Endocrinologist (finally!). He's the old, country doctor sort, and handpicked by me. While he didn't really know that much about Hashimoto's disease, he welcomed the challenge. I imagine he'll be doing a whole lot of research between this appointment and my next one. Yes, he's that type of doctor. Meanwhile he listened intently to what I knew and symptoms I was experienced. He reviewed my blood work and scans. He ordered more like a scan of my lymph nodes which were enlarged also. He basically followed my other endocrinologist's recommendations and treatment plan until he could find out more. He wrote down the information about from the specialist in CA. At this point, I knew I had chosen this doctor well. No god-complex in this doctor at all. I left the office feeling good about my choice.

Next up was my neurologist for Botox. Another finally. The Botox was all but gone from my arm and leg, but unlike before I actually made positive gains in therapy unlike the past four years. I can now, so long as the Botox is working, almost straighten my elbow voluntarily, and I can stand up without my AFO so long as I place my foot in proper alignment fist. It's the first time since 2016 I've been able to do this. Unfortunately, it doesn't work this way when the spasticity is at full force yet. We discussed changing my blood thinner to something "weaker." He said that there wasn't any. But since I was still having small strokes in spite of the Plavix, he was more inclined to increase it rather than decrease it. I had the neurologist's office call in a prescription for PT and OT to start again in around in a week. This is the first outpatient therapy center that takes a month to get into.

Next up was my cardiologist.  After reading the EKG, he determined that the fluid retention was indeed caused by my heart. He wants to schedule another nuclear study to confirm. I scheduled it for two weeks. I posed the same question to him about my Plavix. He agreed with my neurologist. 

Okay, that's two votes against my changing blood thinners. Now both specialists said if I could take aspirin... but I'm allergic to aspirin. I also know if the nuclear study shows what I suspect, then the subject of valve replacement surgery or heart transplant will come up again. Then I'll have to go through my reasoning as to why I won't have either with this doctor. What I don't understand is why the valves could have gotten worse. I have no high blood pressure nor rapid heart rates to aggravate my condition. I guess time has finally caught up with me. It's only 6-15 years past normal outcome predictions. In hindsight, not too shoddy but I'm the Queen of Abby Normal. All hail the queen!

Lastly, my PCP. I asked my PCP at his "interview" appointment did he love his mother? He said he did. Okay then, when I say a "good doctor" I mean a doctor that will listen and treat me as if I was his mother. I've actually seen him more than my "ologists" because the insurance gods require a follow up after a hospital stay or visit. I need a referral to a good orthopedist. With the renewed movement of my shoulder after Botox, my old Rotator cuff tear or maybe a new one is acting up and is quite painful in OT and at home. Considering my PCP was a roll of the dice, I like him.

Well, I guess my PCP wasn't the last and then there's all the testing. So, it begins or it continues. Sigh!

Nothing is impossible.