this is turning into a medical blog and it's got to stop

My friend Angel has a blog where she talks about pretty much everything. Occasionally she expresses how "medical" it's getting and how that needs to stop. Her medical situation is complex, scary, and for the most part undiagnosed. Or maybe I should say not fully diagnosed.

Mine is not so complex. Maybe as scary. But it's mostly self-created. I'm fat, over sixty and spend decades not going to a doctor because I lacked health care insurance. But that's another subject entirely. We won't go there.

I thought walking would help me lose weight and solve all my problems. But of course it didn't. And honestly, the last two years I haven't done too much at all. Not since we walked the entire D&L. Maybe I need to do that again? Or Maybe something equally as challenging. This whole "walking for fitness" started with a diagnosis of high blood pressure in 2009. To get my ass out there I signed up for the Koman 3-Day. Nothing like three days of walking 60 miles to get you motivated.

My plan for the summer was to get back on the wagon. I was going to exercise every day -- or at least most days -- and I was going to be back in shape by the time school started. Especially with a doctor's appointment mid-August. That will be it's own slice of hell since I've gained 15 pounds, lost an inch, and am eating sugar like vegetables. Plus AFib. That's always leering in the background like the monster under the bed. Just as insidious.

Let's take the medical issues one at a time:

Eyes: Surgery is rescheduled for 7/24. Hopefully the ghosted vision will go away and I can read, drive, and work again without having to concentrate so hard. I am spending a lot of time with my eyes closed just thinking ... and making up stories in my head. And daydreaming. Being as lazy as humanly possible. But I have gotten all my work done. But if I was a writer ...

New Meds: Since I've been taking the new meds I'm always tired. And I just don't feel like doing anything. My knees always hurt, I see knee replacements in my future. But now they really hurt. 24/7. Especially the right one. It's painful to stand up so then I don't feel like going further. And I have a nagging cough. It's a real PIA. My back hurts. My torso hurts. Everything hurts. And I can take no painrelievers. Everything is off the table because of AFib. Not that I would anyway. ..often

AFib: My heart is in AFib again. Not as bad as before. Hopefully it's because I took my medicine wrong this week. (So many f-ing pills. I'm an old lady. I had to buy one of those plastic trays! Soon I'll have the little plastic crate for all my bottles. Egads.) I found a way to know that I'm in AFib without the blood pressure monitors. If I wear my fitness band to bed, the sleep data comes up differently. When it first happened, I thought it was a software update. Then after the new meds it went back to the old way. I was puzzled. On the 26th it went wonky again. This time I am not puzzled. This change in format is telling me something. "The tracker couldn't get a consistent heart rate reading while you slept." Bazinga. It sucks but I can now say conclusively that this all started on or about June 5, about five days before I had that first wacky blood pressure at home, then at Patient First, and well you know the rest of that story. June 20 was my first day back at having the "normal" sleep app. 

The cardiologist wants me to take my BP every day. I have the CVS cuff monitor on the right. The BP was fine, but the pulse has been whackadoodle. My fitness tracker say 70. This say 93. So I mentioned this to Pam yesterday after yoga and she said, I have a machine. See what mine says. Her's is on the left. These readings were taken within a minute of each other. Something is very wrong, but which reading is right? Pam suggested I take my pulse old school with my finger and a watch. I did that and guess what? It matched the fitness tracker. Both BPs are acceptable so I guess I shouldn't worry.

I redid the test this morning with the BP reading very similar with the readings on the two machines to last night. The pulse rates, however, were thru the roof. One said 70, the other 114. I can see them being different--two different machines, but nearly 50 points? Shouldn't they be similar? And how do they match up with the doctor's office. I have half a mind to call Bonnie and invite her and her BP cuff to take it old school. Because something is very wrong with the technology. My fitness tracker said 68 if I remember correctly. I'm seriously thinking about buying one of those pulse meters that goes on your finger. Or an Apple watch. The price difference is at least a grand.

The cardiologist said I need to eat better and exercise 30 minutes a day. 

I've started weaning myself off of caffeine. The headaches are constant. Giving up caffeine will help me give up some sugar too. It's a win-win. 

Since I saw her, I think I've done exercise every day. I've done Milly (45 min), chair yoga (60 min), and ridden Sharon's Cubii (20-30 min). I have not really walked outside. I'm paralyzed with fear. I fall so much and they have me on Eliquis. Falls equal trips to ER and blood clots. You've seen the sidewalks around here. But I have to get over that. My goal right now is to get my ass back out there and walk or do some sort of exercise for a minimum of 30 minutes a day during July AND blog about it. You're in for a lot of boring posts.

finally good news

Today I had the follow up appointment with a cardiologist. It was not the one I saw at the hospital. I would have had to wait until mid-July to see him. Instead I went to Cedar Crest and had a delightful young, African doctor with a beautiful British accent. Who also happens to be a woman. She reminded me of Belinda.

I've been taking my BP/heart rate  twice a day. Sunday I noticed my heart rate numbers were going down. Yesterday they were downright normal. And then again this morning. I was feeling pretty good when I got to the doctor.

This was a different experience than any I've had at a doctor. I had my phone on my lap with the app open. The nurse took my BP and turned to me and said are you recording this? I said yes and she told me. When the doctor arrived, she looked at the numbers and sent the nurse for the EKG machine. She looked at the info and notes I sent to Dr. #1! and asked me if I changed the medication. I confessed I did not. I told her I remember a doctor telling me early on in this adventure that any Atenolol over 100 mg was really bad for you. I decided to wait. Clearly I didn't need it. (Pshew.) The EKG was perfect and I am out of AFib.

I was there nearly 45 minutes. The only thing that I disagreed with her on was doing a sleep study. I was frank. If the study said I had sleep apnea I would not use that machine. And I am way too lackadaisical to keep the thing clean. I can barely remember to clean the toilet. I promised to exercise 30 minutes everyday and eat better. I can do that. I just need to find that Gayle again. She's somewhere. Although walking on city streets does scare me. With the Eliquis I cannot fall.

Best news I can have my eye surgery. I will have to stop the Eliquis for it. She said no more than three days. If they want more they need to contact her. I don't need to go back until January.

 

 

When I returned home I asked Pat if she wanted to do Milly. They tape it every week now so you get a link to the tape. We missed Monday because Sharon and I both had doctor's appointments. Pat was a little bummed out. (Wait till fall term when I'll be at Warren every morning and NCC every afternoon and evening!)

Schools out so her side-kick was helping. She's now as tall as Milly. I'm guessing she'll soon reach the age where hanging with Grammy isn't cool any more. I love that she's got her own t-shirt.

the hits keep coming.

On Saturday my PACE card arrived in the mail. (Thanks Barb.) I was excited. The surgery eye drops were about $400. The PACE card brought them down to $15, $8, $8. Cha-ching.

Tuesday I left the house at 8 am to go to the dermatologist by Elin's old house on New Street. Everything went well. Nothing had to be removed. I was in a positive mood. From there I planned to go to Patient First on Schoenersville Road to have my pre eye surgery physical. My family doctor is on a 4-month leave so I figured if I had to have a stranger, this would be easier. And that's where things took a turn for the worse.

I checked in at Patient First. The nurse told me I was 5'7 (excuse me? In October at the Dr. Office I was 5'8''!), took my BP which was fine, but my heart rate was 122 or something like that. She sent me back to an exam room and I was waiting for the doctor. The doctor asked her to take my heart rate and BP again. The BP went down. Heart rate went up.

The doctor comes in, does the whole physical and things were going fine. Then she hit cardio vascular section. She whips out the manual BP and looks at her watch for the pulse. She didn't tell me the numbers and ordered an ekg. At that point I knew I was screwed. Congratulations. You have AFib. Being positive, the doctor says no problem. St. Lukes or LVH? I said LVH. She logs into the computer while talking. We'll make you an appointment with a cardiologist. They'll give you meds, and in a couple days you come back and I sign off on the physical. You can still have the surgery. She pauses dramatically. Oh wait. Maybe not.

LVH requires an initial diagnoses of AFib in the ER. I say, I do not want to sit there for five hours just to get in. She says, no problem. We'll call and tell them you are coming and you'll get right in. I leave with an envelope with the ekg and other stuff. However, I didn't go straight across the street to the ER. I drove back to the derm to pick up my phone. Then I called Pat and said I wouldn't be home till dinner time. I had 32% charge on the phone. This is not good when you're stuck in an ER that long. Had I known they had a charging station. But everything I've read says that public charging stations are easily hacked. Probably better that I didn't.

I went into the ER after parking a half mile away, and signed in. There were a lot of sick and hurt people there including a 7-8-9 year old girl glued to mommy with-- I'm assuming--ice on her face. She had crocodile tears. I, however, am perfectly fine wasting space and resources. So we wait.

I get in in under an hour. (The little girl went in right before me.) They take me back and everyone keeps asking me how my pain is. I'm not in pain! I'm perfectly fine and thrust the EKG at them. They hook me up to machines. They take a gallon of blood. (It's my blog and I can exaggerate if I want to.) The ER doc comes in and asks me about my pain. I'm not in pain! He tells me they'll probably keep me overnight and then tomorrow zap my heart. (No thank you. If I'm spending that much money I'm going somewhere fun.) He leaves noting a cardiologist would be by "soon". They take an EKG and send me for a chest x-ray. The waiting begins. At about 11:30 I'm bored to tears and text Bonnie. Are you home? I need you to translate. She was in Bath. On her way.

Meanwhile my LVH app starts to bing. Bonnie has arrived so I log in and pass her the phone. She reads everything. All was okay. The cardiologist -- Pat's cardiologist -- comes in and tells us they are going to try and fix it with meds before trying the zapping. I tell him no zapping. I'm spending that money on a real trip not two days in a hospital. Orders an echo cardiogram. It's now 2:30. Bonnie has to leave. The dr. still hasn't come back. She gives him till 3. He arrives. Then the bad news starts to roll in.

No eye surgery until at least fall. He doesn't think zapping will help and they will try meds first. What is Plan B? I have no idea. There are new meds including Eliquis (the blood thinner) ... and even he knows it's expensive. And Cardizem, a calcium blocker that works by relaxing the blood vessels so the heart does not have to pump as hard. It also increases the supply of blood and oxygen to the heart. They took away the AmLodipine. My heart is pumping fine but the top is enlarged because of the BP medicine. That concerns him. No salt, caffeine, processed or canned foods, lunch meat, bacon, sausage, and CHEESE. Okay most of that list I can live without, but you'll be prying cheese from my cold dead hands. He says I can go home after they give me meds. Bonnie leaves. Phone dies.

They disconnect me. I get dressed and wait nearly another hour before the meds arrive. I head to Target to pick them up. I give them my PACE card and they need to rerun everything thru the computer and relabel it. I need to kill about 15 minutes and treat myself to a dragon fruit lemonade at Starbucks. Retail Eliquis is $600. The one surgery eye drop was $350. With PACE they were only $15 each. The other two were $8. My total bill was $56 instead of over $1000. And that's before my eyedrops. I've been spending $600 a month on them alone with the discount plans. I need to go play the lottery to thank them.

I left at 8 am and returned home about 5:45 pm. Fun day.

I need to postpone my eye surgery until fall. So much for being pro-active this time. I have to have stable Afib before I can do it. The drops are good till 2025. I put them in the fridge.

more bad news -- second doctor's appointment.

 

 

Creepy picture. Right? There was no way I was posting a photo of my eye without serious Photoshop. Honestly, it's better than the real thing. At least it's artistic. Sort-of.

Anywho. Today I went to see the very pregnant glaucoma specialist. The first hour I was there was tests. I did the field of vision test which seemed to take forever. That's the test I call Pac-Man. It's like playing a video game. Then they took pictures. They also took this thing that was like a utility knife with a fat needle shape at the end and poked my eyes. I got yelled at for closing my eyes. Hell's bells. There was a needle shape coming toward me. I'm ducking blinking.

Finally the doctor arrived with her assistant. She was wearing the same scrubs as the staff. I would have never known she was a doctor. The doctor Monday was wearing street clothes and a lab coat. Doctor clothes.

They didn't dilate my eyes. She examined both. Confirmed that the one was gone. I need minor glaucoma surgery that can be done with the cataract removal. Risks don't go up. Thankfully it is not the major one. 

 

I have chosen to approach this as positively as possible. Maybe less drops. Maybe no glasses for near vision. Those are great things to look forward to and embrace. Mostly because the alternative would be hell.

But I'm not being stupid. I have to be prepared if I cannot work. I've applied for PaceNet. I tried to apply for Social Security and got locked out. (Bonnie is screaming it's about ducking time. Can you hear her?) What else do I need to do? I'm sure there is an app for that.

One part of me wants to sell everything and move into a tiny studio apartment that I could navigate blind. Another part is shouting don't be ridiculous. But seriously what would happen with the twins if I go blind?  That's the scariest part of all.

moving with milly

 

 

My office was full yesterday.

Mondya I had an eye doctor's appoint to see if they could fix my shadowed vision with surgery. I arranged to pick up Sharon after my appointment to take her to the bank. But I was very late picking her up. My appointment ran late, even though it was at 7:30 in the morning and scheduled for two hours.  Of course she wanted to go more places than the bank. And actually did the bank inside and out.

Monday is Milly day. Pat looks forward to it all week. I told her I'd take her, but we had to head home first. I had to start Moving With Milly for Pat. She wanted to stay and do it as well. I ran around getting chairs, cans and stretchy bands for her.

I started the Zoom and went to my chair which was almost in the hall. I wish I had a video camera for the two of them in action.

Sharon then bought us a pizza for lunch and we never started part two of her errands till nearly 2.

Wednesday she called and told me she was coming next week. She was going to walk the three blocks uphill to the bus stop, and the two blocks uphill to my house BEFORE exercising. This I have to see. She has not riden a bus in three to four years.

bad news. the eye doctor appointment

The first part of this story is here, if you need background.

I went to the eye surgeon this morning. The practice is large and I arrived for my 7:30 appointment at 7:15. I did pre-appointment online check-in. I did the forms.  Yet they handed me more when I arrived. They did not take me back until 7:50.

They did a bunch of tests. Most I had never had before. Then they dilated my eyes with three different drops and put me in the small waiting room. It was a child's space with child books and toys. Yes, I did read children's books while waiting. The one that fascinated me the most was a "find the hidden object" book. It was like someone had a copy of Photoshop and merged every picture they had onto each page. There was an animal spread, toys, glasses, everything was green. OMG it kept me occupied at least a half hour. And no, I did not find everything on each spread. It did give me an idea for a Photoshop assignment though.

Finally they called me back and the doctor came in. She looked at the test result, and then looked at my eyes while calling out letters and numbers. The tech was sitting at the computer writing everything down. Then she looked in my good eye. Not dilated yet. More drops. While we're waiting we should talk. I began to wish Bonnie was with me. However, there is a sign on the front door that said no guests. Patient only unless medically mandated. (Also one that said no audio, video, or still photos in the building.) Very friendly. Right?

So she told me my right eye was dead. No big surprise there. It's glaucoma. No surprise there either. She said I also had pseudoexfoliation glaucoma; an accumulation of protein-like flakes forms in the eye. And they are running away and headed straight for my other eye. This is not good news. It basically complicate things.

She checked the dilation and did it the third time. I had to sit with my eyes closed for 5 minutes. Finally she could look into my eyes. Confirmed that there is pseudoexfoliation glaucoma present. So now I need to have to take care of that BEFORE we can deal with the cataract that's causing my ghosting vision. Wednesday I'm going back to see the glaucoma specialist. Then the two will confer and figure out a plan. The probability is that the two surgeries will be done at one time. One to stop the glaucoma from spreading, and then the removal of the cataract.

Bottom line things will continue to get worse. That is a given. It's my decision to try and save my sight or let nature take it's course. Best case scenario—everything is fixed, including my nearsightedness and life goes on. 

But she also listed some bad and worse case complications. 

One would leave me blind for about three weeks. She even asked if I had someone at home to help me out. Basically during the process of the surgery the lens moves to the back of the eyeball. They have to call in a retina doctor to fish it out, and then they can ad the artificial lens. The two-three weeks would be healing time before the retina doctor can get in there.

The worse case is it doesn't work and I go blind. Permanently. But then not doing anything will have the same effect. It's a Catch-22.

So my family will be delighted that I will apply for social security before all this goes down. If I'm blind, I cannot work. I'm also forced to find a Medicare Supplement plan that I cannot afford. And I'm applying for PACE-Net. I have to dig out my tax forms. They encourage you also to have Part D, but that needs to wait for enrollment in November.

More news Wednesday after the next appointment.