Sunday Stroke Survival:Quick Update

Not mine!Mine's not so pretty.

I had my cardiac stress test last week. This was the final hoop for me to jump through before my rhizotomy. I got my results on Thursday. Yes, I still have three out of four bad, leaky valves in my heart, and heart damage from my heart attack. But, nothing has escalated since my last stress test a year ago. Wohoo!

There was a lot of concern because I was still having angina. Sometimes, bad enough to take a hit of nitroglycerin. But not bad enough to have to take a second hit and go to the hospital. I know what a heart attack feels like. I'll go to the hospital when I need to. This hasn't changed in six years. But yet, the cardiologist wanted to do a heart cath to be sure. I talked him out of it. My ventricular fib is moderately under control with medication. In other words, I'm as healthy as I'm going to be right now. I may change my mind about the heart cath after my rhizotomy. Where I'm concerned, better safe than sorry. But I'm in my status quo and not being foolish.

My hypoglycemia, rather than my diabetes is a mute issue after six years, is a concern but easily fixed with a glucose drip piggy backed to my regular normal saline drip during surgery. Just as high blood sugar presents complications for surgery and recovery, low blood sugar is equally as dangerous. The slightest stress will drop my blood levels dangerously low. Like when I had my first stroke, my blood sugar level was 40. Even though I'd taken my morning dose of insulin, it should have dropped that low. Eating a high carb dinner (pizza with a 16 oz glass of orange juice) barely raised my blood sugar level to normal. By my normal standards, the orange juice alone should have brought my blood sugar to high normal, but it didn't.

This is what my rhythm is like

My ventricular fib also raises my risk factors during surgery. My last major surgery was the removal of five tumors from my abdomen and a total hysterectomy. The whole procedure should have lasted an hour tops, but my heart had other ideas. It fibrillated and stopped twice. Three hours later, my frazzled surgeon told me the tale. I was in the intensive care unit instead of the regular post surgical unit. But still, I'm gladly going ahead with this surgery. A little wary, but that desperate to be out of pain.

What really concerns me is being off my blood thinner. My stroke risk increases 70% of having another stroke. This time I may not be as lucky as the previous six. The stroke could happen any where in my brain. Not that it couldn't have done this already.

If I had another stroke in my right hemisphere of my brain or brain stem, I'd really be in trouble. I'd lose function in both sides of my body instead of just one.

If I have had stroke while currently on blood thinners how greatly does that standard 70% risk increase by being totally off the blood thinner? That's a scary proposition. It's even scarier than the possibility of death. I talked at length with my cardiologist about this but he isn't overly concerned. Considering the clots are forming in my heart and going to my brain, I thought he'd be the one with the most concern. Maybe, my neurologist is the better person to talk to.

I'm not borrowing trouble. I'm just trying to be prepared. Is there such a thing as preparing for a stroke? I know that F.A.S.T. doesn't work for me. By the time facial droop is evident hours have passed. My blood pressure isn't a good indicator either. The same goes for the arm and speech. So the T for time is skewed. So much for being the Queen of Abby Normal.

Well, that's my update.

Nothing is impossible.

Sunday Stroke Survival: Durable Power of Attorney for Health Care

Do you have a designated person for Power of Attorney for Health Care? You should. I'll tell you why this is important. Who to choose as ideal candidate? I'll give you a few pointers that I used in choosing mine and why I ruled out certain people in my life.

Now a Durable Power of Attorney for Health Care (DPOAHC), although the person selected can do both, it is different than a General Power of Attorney which mainly deals with financial matters and property. This concerns decisions about how you are taken care of if you are unable to make the decisions yourself due to mental status, illness, or near death situations. Without someone to speak to medical personnel are legally obligated to do the best in their power to keep you alive. Many court cases have been filed to end a life long after all hopes of a quality of life is extinguished. Even the state or country has a say in keeping you alive without a DPOAHC.

To date, I have been the DPOAHC for five people. It isn't an easy thing to do when it's your loved one and easier to do the more distant they are from you. I am level headed in all situations. I can look at the whole picture given the facts, and can put another person's desire above my own.

Who to choose...

When you are married. Most likely this is your choice for a DPOAHC. Some reasons you might not want your spouse to decide. If you can't trust your spouse to follow through with your desires. Their emotional state is in question. Going against your desire to keep you alive and with them overrides your wishes to pull the plug so to speak.

A prime example, I was my mother's DPOAHC. When her time was neared, she went into severe respiratory distress at her doctor's office. She was transported to the ER. I made sure they had a copy of her DNR and my DPOAHC long before she reached this point. It didn't hurt that they had previously worked with all of them also. In the ER, my father, with tears in his eyes, begged me to let them do something. The ER staff looked to me for directions not my father. I shook my head no. She didn't want that. I held firm. Care and comfort only. I'd seen the x-ray of her chest done before I arrived. She had quarter sized pieces of lung tissue not affected by her cancer. Oxygen and an IV was all I would allow knowing it would be only a day or two at best that she would live. But, still my father begged me to let them do more. It's all she wanted. My father, even though he was her spouse, would not have been a good DPOAHC for her.

Keep in mind that inmost states in the US, the husband has this decision to make for you unless you designate someone else. Even if you are estranged, separated, or divorced. The same goes for your next of kin in case your spouse is deceased. While I'm thinking about it, who is your emergency contact in your wallet? Insurance policy(auto, home, bank, medical, life)? This may be the person contacted if immediate decisions are needed.

You should check and/or change this periodically. I recently did this after my husband died. I even found some spots where I listed my father as an emergency contact. My father is imfirmed and suffers from rapid onset Alzheimer. There's no way he could make any decisions for me.

You sure don't want an enemy to make these decisions for you. Don't have any trusted friends or family? Choose your attorney. If your attorney goes out of business or retires, hire a new one pronto.

When choosing mine, I had a few choices. I weighed the pros and cons of each closest family members. I mean I've known them in good times and in bad all theirs or my life, right? I also have a very large pool to pick from (4 generations) It was a good place to start. I decided on two. You can have more than one. If one isn't available, the other can step in. My choices are my one of my adopted sisters and my #2 daughter.

The reasons for my choice are many, but most important is both understand and will do want I want. Both are medically trained and have Hospice experience. They have the ability to step outside the  situation (family) and make logical choices. They weigh options and outcomes. It doesn't matter if we are at odds, they will still abide by my wishes no matter what.

The fact of the matter is, right now, I have the time and energy to devote to this decision. Now, is the best time to make this decision without pressure. I can think logically and sort through the pros and cons of candidates. Nobody likes planning for their own death. I'm really not planning it by doing this now. I'm choosing my quality of life. I've got the time to hash out exactly how I want to continue living.

Even though my DPOAHC know my wishes, it is also spelled out on the legally binding form that was witnessed and notarized. I actually  had four copies notarized: one for each DPOAHC designee and two for me. One of the copies I carry with me always, and the other sits in a file folder with all my important papers. I want to make sure my wishes are known.

Have back-ups to your back-ups.

Depending on your state, you can define how you exit this earth. You've got some decisions to make also. A Do Not Resuscitate (DNR) means no CPR. Whether or not you want fluids and/or nutrition is another consideration. Whether you want mechanical life support or what is known as care and comfort only. If placed on a ventilator under what conditions should it be turned off? All these are  decisions that need to be addressed in your DPOAHC document and discussed at length with your designee(s). Georgia is not a right to die state. This is the closest I can come to it legally.

Hopefully, you will never need this document, but if you do...better to take the time to do it now. But living post stroke with aphasia. it just makes sense. Plus, I'm looking at hours under the knife in the near future. If I hadn't made these decisions years ago, I'd make it now.

Nothing is impossible.

Sunday Stroke Survival: Coping with Emergencies and Hindsight

In the aftermath of the medical emergency at the Big Red Apple Festival a couple of weeks ago, I've been evaluating and searching for alternatives. Hindsight is always 20/20, but by looking back and looking at alternatives to any situation makes you better prepared for the next time it happens or something similar happens.

With the hindsight bias, you can look at the situation clearly in calmer times.  You can play devil's advocate and what if games til the cows come home. What could I have done differently in this particular situation? Absolutely nothing. I did the right thing.

Yes, I could have jump in when I realized the woman was seizing. We would have both ended up on
the ground. I could have been injured too making two patients rather than one. I could have jumped in, both fallen, but it could have saved the woman from the gashing head wound...possibly. I chose the best choice in milliseconds. I'm kind of proud of myself that I still have this ability. I chose to get the attention of someone who could act and help. Pat yourself on the back, Jo. Ya done good. You deserve it.

What could I have done differently to circumvent my aphasia. In reality...nothing. My adrenaline was already coursing through my veins when I realized this woman was seizing. I knew she would fall and my body would not/could not respond, thereby causing added stress. Anyone with aphasia will tell you that stress is the enemy in outward communication. The stress could be simply tired from too much input into the brain, or in this case, an emergency situation. I still tried to make sure everything was done right, even though my words (and body) failed me. I knew what was the best way even though I couldn't express it.

My choice left me with feelings of helplessness, frustration, and anger because of my stroke. This was to be expected. The reality of what I really can't do anymore struck me in the face like a physical blow.  Not too many situations do that to me after living six years post first stroke. I live a very controlled life. I may run across a few things I can't do yet, but with time, I figure out a way around my inadequacies or impairments. In an emergency situation, time is a luxury you don't have.

So the luxury of  hindsight bias becomes a learning tool. To prepare me for the next time it happens. Honestly, there may never be a next time, but I always remember my mamma's sage advice, "There will always be an again." It may not be exactly like the last time, but there always is an again. So being prepared, I may not be so overwhelmed by these feelings so harshly the next time. I have the luxury of time to analyze the situation from afar. I can look at all the pieces of the puzzle and put them together properly and prepare. This cannot be stressed enough. It's also comforting. I can give myself a pat on the back. This too is important aspect of self esteem. It's too easy to hammer your self worth into the ground after surviving a stroke. Been there. Done that. Still doing that.

I realized in hindsight of the given event, I did exactly the right thing. Have I said it too often? I'm hammering in the self worth.  It conquers my feelings of frustration, helplessness, and anger I was feeling. See how it works? I'm no longer kicking myself for doing nothing. I was mentally supervising the woman's care even though I wasn't physically in action doing it. It was all I was capable of doing. It could have just making lemonade out of the lemons the stroke took from me, but I'm also coping. Sure, I'd have rather be doing it, wouldn't everyone? This was an emergency and I would be in the way hampering rescue efforts.

So now, I'm mentally playing the what if game. What if something like this happened to Mel on our homestead and it was just me there. Days can go by before we see another soul. Cats, dogs, rabbits, and chickens can do nothing to help. What would/could I do? How can I be prepared?

Well for starters, I will do whatever is necessary. That goes without saying. But, there are other things I can resolve to do. I'll begin to carry my cell phone in my pocket all the time. That way I can reach out and call for help. Sounds simply, right? When working in the garden or orchard, it's not always convenient to have that bulky thing in the pocket, but I'll make the sacrifice. I'll just have to make it a habit. Hopefully, we won't be in a "no service" part of the property.

I'll stick a bandana or handkerchief in my back pocket. It may not be large enough, as in the case of the woman, but it's better than nothing. I usually carry a hand towel in my basket or cinch it to my gardening belt. It's sweaty work in the Georgia sun too.

Two little things to make a habit of to prepare for medical emergencies here. Yes there are probably more things I can add, but I'm trying to address the ABCs of first aid (airway, breathing, circulation). For me, It's airway, bleeding, and calling for help. While I can perform CPR one handed, I'd rather not or as little as necessary, so calling for help is essential. And, depending on where I'm at, I may not be able to get myself up.

It's the little things like these two changes can mean the most in an emergency situation.  Hindsight is a very useful tool used this way.  By taking the time to figure out what to do in a given situation gives me an action plan. That is power and control.

Nothing is impossible.

Sunday Stroke Survival: An Incontence Nightmare

Today it's raining. That's not a bad thing normally. We needed the rain for our orchard and garden areas. But today it has been horrible!

My first stroke deadened the sensory nerves to my peritoneal area. It some of the only sensory nerves that were damaged. Other than the right side of my face and a spot on my outer thigh, all of my other sensory nerves are in tact. Thus, the normal sensation of having to go to the bathroom is dulled. I actually rely on a tug around my belly button area to tell me I have to go if I'm not going by the clock. This creates a gotta go, gotta go, gotta go right now situation. I'll start dribbling within a couple of minutes.

Going by the clock isn't always convenient. I could be anywhere on our cleared half acre property when this occurs. If I'm down on the lower tier of the orchard, it means getting on the yard tractor, riding up the terraces, getting off the tractor, climbing four steps, making my way through the house, and then getting my pants/shorts and underwear down before I can sit on the commode. I often don't make it before soaking my underwear and bottoms. This is even with wearing  a pad. You can't do a lot of these actions with your legs crossed to help contain the flow.

Oh no! Not math!

Add Lasix, a powerful diuretic, to the mix and you've got compound interest added. I take this diuretic to keep fluid away from compressing my heart. Without it, my body will hold over 13 pounds of fluid. It will back up in my lungs and squeeze my heart in a very unloving embrace throwing me into congestive heart failure. My cardiologist recently increased my daily dose of this drug because it wasn't pulling enough fluids out of my body. To give you an idea of how much fluid extra fluid I was carrying around, I lost 26 lbs in the first 48 hours! A gallon of fluid weighs about 8.3 lbs or 3.7 kg for my non US readers. You do the calculations for 26 lbs to kg. Any way you look at it, it's a lot of fluid via peeing. I was rarely more than ten steps away from the bathroom for hours. Any distance over ten steps requires bathing and a lower wardrobe change.

The increased Lasix did such a good job of keeping me out of heart failure, my cardiologist decided to keep me on the higher dose. I should be thankful, I could have been hospitalized. But the increased dosage of Lasix also puts additional strain on my poorly functioning kidneys too.

Now everyone knows that the sound running water will make you have to urinate. I'm no exception. Half an hour after I take my morning meds, which includes my Lasix, I'm sitting here around the corner from a bathroom awaiting my day at the races. It's raining outside and I'm making a hobbling sprints to the bathroom. Two hours later, after my fifth trip and one lower wardrobe change, it's still raining and my roommate decides to do a load of laundry. Now, I'm off again. I am sure to empty my bladder each time I go.

Everything gets put on hold. On today's chore list is making and canning tomato sauce. Just what I need...more running water. This time from the kitchen sink. I feel that familiar tug near my belly button. Dropping the two-gallon bag of frozen tomatoes on the counter and I'm off. I've got a choice of  because I'm between two bathrooms. I just make into Mel's master bathroom. Because of a Pavlov's dog type of conditioning, now just seeing the toilet starts a slow release of urine. I have to time the removal of my panties and be seated on the toilet, or be cleaning up the dribbled mess afterwards.

Drat, my poor damaged brain!

I wash my hand and reach for the hand towel. It wasn't hanging on the rack. Doh! Mel was doing her laundry. The idea of sticking my wet hand in the towel closet to retrieve a new one just didn't seem right. Besides, I would disturb her "pet" spider that lived there. He  is only four inches across. I have this relationship with nonpoisonous spiders, I don't bother

them unless they bother me. If Mel wanted to keep a spider in her bathroom linen closet, then she'd have to deal with the cobwebs. Then, I remembered I was going to stick my hand in water any way. I just shook the excess water from my hand and returned to the kitchen.

I grabbed the bag of frozen tomatoes and dumped them in the sink half full of water and grabbed another bag from the freezer. After dumping them into the basin, I swished them around with my hand. Mistake, a tug at my navel again. It had been less than twenty minutes since my last sojourn to the porcelain throne. This time I went to my bathroom. It was only a few steps more. My bladder couldn't be full again.

Once again, I'm hit with the dribbling stream at the sight of the toilet. I'd definitely have to change pads. My bladder was full. I returned to the kitchen. The tomatoes were slipping their skins and I placed them in a colander and refilled the sink with two more  two-gallon bags of tomatoes. I had twelve bags to do in total. I was then squeezing the tomatoes out of their skins and into my 16-qt stock pot to cook down.

My garden has been very productive this year. All of them had to be sauced today because of a half split of lamb was going into the freezer in two days. I didn't want to wait until the last minute to do the tomatoes because sauce takes time to make it good. I usually do this during winter when the heat and humidity are appreciated more. Better to do them before something else came up besides running to the bathroom.

Prime cuts of lamb

About the lamb,  a local, no chemical, pastured raised sheep operation cut me a deal on a split for less than $4 a lb. I may look crazy, but I ain't totally bonkers. I jumped at it.  With the lamb, I had no choice about doing the tomatoes. Plus, I'll get all the off cut like the pancreas, brains, kidneys, tongue, and intestines. When cooked right, these off cuts are a high dollar food in restaurants and I know how. The intestines will be washed, cleaned, and frozen in brine for breakfast sausage casings. The long bones will make excellent bone broth and dog bones later. I'll get them for almost free considering he discounted the lamb by $2 a pound for me. It sure beats the $6 or more a lb store prices. Fall lambs are not as tender as spring lambs, but to me there's little difference.

So for now, I'm weathering the storm literally and figuratively.

Nothing is impossible.