Now Playing: "I Wanna Feel Where Love Is"
Topic: Milestones Along the Journey
It seems that, at least on my journey, things happen out of nowhere. The latest "event" was precisely one of those things.
Here's how it happened.
Having no internet access, I was in the habit of walking to (20 blocks) and from (20 blocks) the local Public Library to have 2 hours online. Mid-March brought some surprise as I began having difficulty making the trip. I would have to stop several times on the way to the library, and arrive so tired I had to rest before I could begin my online activities. On the way home, I would have to stop even more to rest. More times, and for a longer period each time. I just thought I was out of shape! I AM out of shape! And, yes, round IS a shape.
Later March saw me unable to safely make the trip some 12 blocks each way to my favorite market. Then, even 2 blocks to the local convenience store became impossible. I put it down to a lousy physical condition. To my mind, exercise was the solution. The more I exercised, the worse it got. I should have known. I didn't.
On March 31st, I woke up in severe pain in my groin and legs. I could not make my legs work. It took an hour to simply get from my bed to my living room--a distance of some 12 feet. I finally drug myself to my front door, where some friends were out in the hallway talking. I got one of them to come to me, and help me back into the house.
They went directly to the phone, and dialed my friends at the West Frankfort Fire Department...a limo with lights! Off to a new and strange hospital I was agoing, like it or not. My blood sugar was way up, I couldn't breathe without oxygen, and the pain was simply incredible. My legs wouldn't work--at all.
In the next ten days, I would learn that blood clots had developed rather instantaneously at the junction of the descending arteries (femoral) and ascending veins (saphenous) of my legs. There was no (zero) blood flow going to, or from my legs. An emergency trip was planned to Barnes Jewish Hospital in Saint Louis for a bi-lateral amputation of the legs, but was quickly called off as the surgeons there would not even attempt the surgery given my medical condition. I had blood clots by the hundreds, it seemed, running around my body, clogging off everything they could find. This also included the complete blockage of the Greenfield filters that had been installed to prevent blood clots from travelling to my lungs, heart, and brain. Collateral circulation was my only hope.
When a major passageway gets cut off, the body attempts to build a "bridge" around the blockage. This is called collateral circulation. If it is effective, the collateral circulation will produce about 10% efficiency of the vessel it replaces. That's the good news. The bad news is that any vessel "collateralized" is done. If a major vein, that's just bad luck. Going around the filter designed to keep me from "stroking out" is generally considered a poor medical alternative. Furthermore, the much smaller created vessels are much easier to block with even a small clot.
My clots "organize" extremely quickly; that is to say they become leathery, and completely unavailable to the newest "clot busters" therapies you hear about all the time.
It took some ten days to get my medical condition organized to the point that the Doctor's only alternative became viable: discharge the patient to home with total bedrest for at least six months to see if the condition improves. If not, other more drastic measures must be employed to attempt to save the patient's life. Blood thinners in lethal doses are presecribed, and the patient MUST keep their (meaning, MY) legs higher than their heart at all times.
I came home with no one to assist me--at all. Neighbors helped until I could get qualified for home care, which happened in early May. My walking these days is done with a wheelchair outside the house, and a walker inside the house. That's pretty much the way it will be for as long as I can sustaing the activity. The diabetes does not like this condition, and diabetic neuropathy has taken over. My legs are basically numb from the waist down. I watch for venous ulcers (2 at the moment), further discoloration of the feet and legs, pain, and diet. Rest is an interesting phenomenon.
While I was in Herrin Hospital, it was determined that I slept poorly. I had a sleep study done, and failed it miserably. One event left me breathless for 37 seconds, with over 80 dyspneic or apneic events per hour, on average. Who knew? Not me. But, it did answer the never-ending fatigue questions. I now am the proud renter of a Bi-Pap machine that is on the highest possibe pressure--both inhalation and exhalation. It's like being on a ventilator without the tube. The machine forces air into my damaged lungs, them pulls the air out--whether I want to or not. I wear a mask whenever I sleep.
The things you must get used to, huh?
I also changed my Primary Care Physician as a result of my Herrin visit. He is really good, and has gotten me set up with four (4) specialists who will now become directly involved in my healthcare. A cardiovascular surgeon, a pulmonologist, a diabetes endocrinologist, and a dentist will, in addition to my oncological surgeon, treat me at his direction. Things are getting more and more interesting.
As of this date, I have a home care worker who visits four or five hours each day. I see the "Dracs" weekly, and they take 7 tubes of blood on average. I see my doctor about every two weeks. I take 27 different prescriptions daily. I am on total bedrest (Uh huh, yeah. Sure.) I have a new Healthcare Advocate who travels from Columbia, Tennessee two weeks per month. She is an old friend, and an RN who seems to think my health is much more important to her than to myself. As if. She coordinates my healthcare with all the players, gets and explains my bloodwork results to me, and helps me with the ongoing--and ever increasing memory loss issues I am experiencing.
Get the picture?
I wish I could say I had no idea. I did. I just did not pay attention to the symptoms as I should have. The docs told me it wouldn't have made any difference if I had come in earlier. I'll accept that, but I really don't believe it. My legs are sort of an important part of my body, my life and happiness, ya know? I intend to leave with everything I came into this world with.
Getting there may be a bit of a slower journey now. The one up-side is that now I have internet access, and a brand new computer in the house. At least I can prop my feet up on a chair and type.
I'd really rather be walking to the library.