Or maybe my rocker is loose. Could it be I’m off my screw?. Should I screw my rocker? I know, I bet my rocker screw is loose. Or even worse I have a loose screw rocker. My screwer rocks and I’m sure I rock my screwer. It’s all very confusing.
I got my answer from Barrow Neurological [...]
As I might have mentioned in recent posts, I’ve been having a situation with my lower back. Well, we still don’t have a satisfactory resolution, but we might have discovered what is actually causing the problem. The shot series was a failure, although I really enjoyed all the attention and the fact that I was ordered to “take [...]
As part of the ongoing campaign to break my spirit, the spine doctor has prescribed six weeks of PHYSICAL THERAPY. (PT) On the day of the first session, I marched (actually limped) into the facility with tons of confidence and a very positive attitude. The first order of business was filling out reams of required forms [...]
I must begin with an apology. It seems like an inordinate number of my recent posts have dealt with grotesque procedures being perpetrated upon my body. But you must understand. If one truly strives to be bionic, one must be willing to constantly “have stuff done.” These atrocities are simply stepping stones which must be [...]
Why haven’t I posted since June 26th? I don’t even have an excuse this time. How about: (1) My hand was mangled trying to dig cow pies out of a corn picker. (2) I was released only yesterday from a, shall we say, “reprogramming facility,” after being found in a cart in the HYVEE parking lot eating a [...]
The Big Irishman and I spent two days in Tucson last week for my annual pick, prod and poke. As many of you have been able to read between the lines - I have suspected for months that there might be something wrong with Perpetua. I can’t put my finger on the reasons for this suspicion. Something just didn’t feel right. Well, I’m pleased to announce ….. Perpetua is doing just fine and, aside from my paranoia, I guess I’m okay too. For those who are interested in all the gory details, I’ll walk you through the PPP process.
We got up at 4:15 am on Tuesday, May 22nd. I had to shower and shave my legs. God knows that one must always have freshly shaved legs if one is going to be knocked unconscious and be skewered like a kabob. Tom drove to Tucson while I dozed and complained about everything I could think of to complain about. (The man is a saint.)
We parked and immediately went to the lab. The head vampire sucked out 11 vials of my blood in order to perform at least 106,000 tests. There was a STAT order placed on my labs. I think STAT stands for “Shanlee’s Tough and Terrific.” From the lab, we went directly to out-patient surgery where I was greeted by my favorite nurse, Chuck. He took care of me during my two rejections - post transplant. He has since moved to the cath. lab. We chatted, and as usual, he gave me tons of great information.
He said that the second year after transplant is the toughest. The emotional high is gone, and reality rears its ugly head. You start to realize that the meds have really nasty side effects, and that you have to work hard to maintain good health. You also start to feel like this whole situation is just too good to be true. You begin to wait for a crisis that will end your wonderful new life. I am also constantly aware, to the point of obsession, of the huge responsibility I have to Perpetua. I often wonder if I’m doing enough to protect her and honor her memory. Please don’t misunderstand. These are just small bumps in the road - a tiny little price to pay for my wonderful second chance. That said, it was still nice to have Chuck validate my feelings and explain that these thoughts are all part of the transplant process - all recipients walk a similar road.
I also talked to him about the fact that I’ve been sick 9,763,211 times in the past year. I’ve missed lots of fum stuff and I’m tired of taking antibiotics. Chuck assured me that this is “Standard Operating Procedure,” and that the second year is also the worst in terms of frequency of illness. Soooooooo, I’m looking ahead to a much better third year with my beautiful Perpetua.
A quick run-down of my results:
The heart cath. showed that I have great pressures in both ventricles and my pumping sequence is perfect. There is absolutely no sign of enlargement or rejection. ALL of my arteries are totally open - with no sign of even a beginning blockage.
The abdominal ultrasound revealed that my pancreas, liver and kidneys are normal. One of my liver ducts is slightly enlarged - probably because I have had my gall bladder removed. There are 2 tiny cysts on my right kidney, but that is perfectly normal for someone my age. I guess all old ladies have acne on their kidneys.
My chest x-ray showed normal lungs. It also showed that my breast bone never fused. This is probably because my chest has been cracked so many times. It makes a “clicking” noise when I move a certain way. Dr. Copeland isn’t quite sure what we are going to do about this. I’ll keep you posted.
Probably the greated news off all: My echo cardiogram showed that my ejection fraction has increased from 60 a year ago to 63 - probably because of my exercise. F.Y.I. - normal is 65 and the ejection fraction of my old heart on the morning of my transplant was 13.
My labs were great - kidney and liver panels all within the range of normal. This means that the drugs aren’t slowly destroying my organs.
The most fun part of our Tucson adventure was staying with our friends, Jon and Colette. We enjoyed a fabulous dinner cooked by Jon and lots of super conversation. The low point was having my kootchie-foo shaved by the best looking guy in the cath. lab.
This a a very distorted picture of my right foot, but it will serve the purpose for which it is intended. Several years ago, when I had my first heart surgery something went terribly wrong in the operating room. I ended up losing most of my heart. I won’t bore you with all the gory details. I’m not even sure how to describe all the things that went wrong. But during the drama in surgery, an assist pump was placed into the femoral artery in my groin and threaded up into my heart to help it pump. Because my situation was very unstable, this pump was allowed to remain in my artery for far too long. As a result, the circulation in my right hip was destroyed and this led to an eventual total hip replacement. Another, more immediate, consequence of the pump was that a whole bunch of micro-emboli (tiny blood clots) were forced down into my feet. These caused my feet to swell and turn black. At one point - so I’m told - all the doctors were worried that I would need a double amputation. At the time, my primary concern was that all my beautifully pedicured toenails were falling off one-by-one.
I suspect that I was being given some fairly hardcore drugs to keep my level of hysteria under control, because I don’t remember being very worried about my feet. But losing my toenails began to symbolize all that was wrong in my world. I know I should have been worrying about much larger issues, but all I could grasp was that without toenails I was now considered a freak. I can remember waking the Big Irishman in the middle of the night to tell him that yet another nail had hit the deck.
As you all know, I survived and my feet survived . And I’m happy to say that 8 of my toenails returned to their former glory. For the past several years, I have been applying huge globs of polish to the skin on my pinky toe and the one next to it. I soooo wanted the world to see me as a complete toe-nailed woman. About 7 months ago, during a pedicure, Ellie (my nail lady) shrieked and announced that there appeared to be a small, hard smidge growing on my little toe. Then she yelled again when she discovered a similar small, hard smidge growing on the big guy next to my pinky. Praise the Lord - at long last the moment I have been waiting for. I felt like I had won the lottery.
For the past several months we have had great fun watching these toenails grow. Dr. Copeland explained this wonderful life-changing event with two simple words, “increased circulation.” Those of you in the toe-nailed world will never understand how much this means to me. Seriously, because toenails had become a symbol of my whole ordeal, now I finally feel whole and healthy. THANK YOU PERPETUA.
I think I need a great big kick in the butt. I just hope Perpetua doesn’t decide to give me a great big kick in the chest - if you know what I mean. I’m having a compliance crisis. In all the months before my transplant, all I heard from my team was compliance, compliance, compliance. This concept involves taking my meds on time, getting my labs done monthly, watching my diet, exercising and taking my vital signs first thing in the morning. I have no problem with the meds, probably because I know I will only live about 2 days without them. I’m more than willing to do my monthly labs because I’m forever hopeful that based on my blood levels, my team will lower dosages or do away with some meds. Diet and exercise are rough, but I do okay most of the time. It’s this vital sign thing that I’m having such a problem with.
Each morning for the rest of my life I am supposed to chart my weight, blood glucose level, temperature, blood pressure and pulse and check my feet and hands for swelling. The whole process takes less than 5 minutes. Each of these measurements can indicate a problem with Perpetua, and taken together they present a fairly clear picture of overall health. Until March I had never missed a day. I forgot one morning while I was visiting Meghann and Scott in Salt Lake City. When nothing bad happened as a result of my lapse, I guess I just got very casual about the process. Now I’m lucky if I check vitals twice a week. BUT WHY?
I’ve agonized over this and still don’t understand why I’m doing it or I should say not doing it, but I know it’s not fair to the woman whose heart I carry in my body. (Have I mentioned that I found out some things about my donor. Now I know that Perpetua came from a 29 year-old woman.) Am I just trying to feel normal? Am I tempting fate? Is this a way I can be non-compliant with no immediate threat to my life? I’ll continue trying to figure this out while at the same time attempting to clean up my act. If you see me - please give me a swift kick. PERPETUA DESERVES BETTER.
I’m breathin’ easy and lovin’ life - no I’m not on pain pills. Molarius, the saint of all things dental, and Toesium, the patron saint of toes, conspired in the middle of the night to save my sorry bum from that torturous surgery I described yesterday. Several weeks ago I tripped over a file drawer that I was sorting through. I jammed two toes on my right foot, and ripped the bottom off my pinky neighbor toe. I’ve been trying for days to get this sucker to heal. I’ve soaked, poked, Neosporined, bandaged and threatened to amputate - all to no avail. Did you know that soaking your toe in bourbon can actually quite pleasant?
Anyway, I awakened this morning with a throbbing, swollen foot and my toe was oozing that telltale green slime. All my attempts at self healing had obviously failed. Off to the Doctor. Three hundred and sixty dollars later I have a handful of prescriptions and an order for a toe xray. Get this - the Dr. wants to make sure that the infection (staph) hasn’t infiltrated the bone. If you know of anyone who has an immune system for sale, please let me know immediately. I could sure use one. The good Doctor assured me that I will probably dance again - with all ten of my piggies. The biggest bummer - I still must have the dental surgery. The transplant team just wants my toe to be completely healed before Dr. Painpounder opens up another hole on my head.
I’ve been watching CNN most of the day. It’s been a real lesson in why we need a change in Congressional leadership. At first it was reported that Foley had entered rehab - liquor was used as an excuse for his “inappropriate behavior.” Then at an afternoon news conference his attorney explained that poor Mr. Foley had himself been the victim of sexual abuse. Oh - that explains and excuses everything. There doesn’t seem to be a Republican in the world who can say the word, “PERVERT.” I got a big kick out of junkie Rush comparing Foley to Bill Clinton. That’s digging pretty deep for a rationale. How about that Hastert. First he didn’t know about the e-mails. Then he knew about the e-mails , but not the text messages. Then he couldn’t remember what he knew and when he knew it. The only thing he seems sure of is Bushie’s support. Does George own the FBI in addition to the CIA and the NSA? The FBI had this information in July and decided not to investigate. Have we had enough yet?
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Tomorrow I’m going to be an unwilling participant in a dental drama. In fact I’m the star. Keep in mind I’ve had a heart transplant and given birth to three children without the benefit of painkillers. ( They did put me to sleep for the transplant and gave me a little something to take the edge off - post transplant, but the baby birthing was natural all the way.) I suppose I should begin this story at the beginning. Several years ago I had a root canal on my back right molar. For some reason, the endodontist was unable to open one of the canals in the tooth. I can remember being really outraged that I didn’t get a price reduction. Little did I know that this unplumbed canal would come back to bite me.
About three weeks ago I was awakened in the middle of the night - sure that Tom had been beating me with a large sledge hammer. My jaw, in fact the whole side of my head, throbbed to the point that I was starting to question if I could maintain my sanity. The next day I had consultations with my regular dentist, my endodontist. and my transplant coordinator. It was decided (without my input) to clear up the infection with antibiotics, control the pain with pain pills and schedule surgery. I briefly suggested pulling all my teeth. After all, teeth in a Tupperware container rarely cause pain or infection.
It wasn’t until I actually scheduled the surgery that I fully understood what this illustrious group has planned. Apparently Dr. Poundingpain is going to make an incision in my gum, drill through my jaw bone, and access the nerve canal from THE BOTTOM OF THE ROOT. Like hell he is! I will keep the appointment because I don’t want to pay the cancellation fee. But I plan on screaming the moment I’m inside the office that I’m sure terrorists are following me and I will secretly leave for every one’s protection. I will fake a wild-eyed look and maybe pant a little. My plan should work.
How many big wheels in the Republican leadership knew all about Rep. Mark Foley’s dirty e-mails, but chose to cover it up. Scum bags all.
