Sunday April 25, 2009

Our book is almost done, letters of attestation pending. I did it. It feels like I climbed a large mountain and I'm standing at the top, all bent over and breathless, hands on my knees. Tachypneic (short of breath), breathless, and scared about how long I should be up here, and when I should start going back down to the lower resting area down below. But no. I have to stay here, because I made it this far. I have to revel in the taste of bodily success, take that pushy mind that I can now lay to rest. Sit and bask in the newness of my condition, using great caution at every turn in the road ahead.

My PICC line has been out for about 10 days, and I have been off the continuous infusion of sugar and salt water for about 40 days, I think. I'm too tired to write it down to maintain track of the days. All I know is that it is another day that the Lord has made, and I will be glad and rejoice in it.

I tried on clothes for traveling to Phoenix, AZ. I hope to meet with my cousin's family, attend parts of an anesthesiology pain medicine meeting, where my husband will be finishing his last stent as President of a national organization. I will see some people that I have not seen in years, and I will see people who I have seen before at these meetings. It will be a reunion of sorts, and I will revel in whatever I can do. I can sit for the car drive, but my neurogenic bladder has an 'all' or 'nothing' phenomenon, and I don't want to be caught losing it 'all'. So I will do what hundreds and thousands of 80 year olds do, and I will wear briefs in the car. Embarrassingly, I have had urine drip from my bladder while in an elevator, while in a plane, and in the car. Full bladder loss of control. Egads.

That is the thought for the day. I'm happy to be lying in bed making sure I do not get too tired. Yesterday, I slept through most of the day, because I had a migraine headache and my head felt like it was size of a huge balloon. Off to nap, I just have no more energy for today.

About 6 days off PICC

It is like being human again, not having to confront dead batteries that stop the CADD pump from pouring sugar water into my heart area. Make sure the refrigerator is stocked with supplies. Blood clot? Activase to fix. Catheter pulled out accidentally. Catheter stuck on a chair, pulling me back like the boing of backfire. Stand up and find my bag and my tubing. Not there? Check the other side....but I turn around now, and there is n o   b   a   g  . It is only an empty spot behind me know, and I inwardly smile at being able to live without being tied to an iv.

I see struggles, strangulations, gossip, and ill-feelings that were directed toward me, and there are a handful of people who would probably like to have heard that I died from the car accident years ago. Seriously. I can not help what I think about, but I can write down my thoughts.

I used to think I had a dark cloud above me, like adversity and immoral activities followed me wherever I went. As if I was constantly being tested, constantly failing, and constantly asking for forgiveness. But now I know that God is using me to give hope to others. People with arthritis, with hypertension, cholesterol or a cancer such as breast or prostate. Girls that get pregnant and decide not to abort the baby. Adoption and love for little children who can be a blessing from God. 

First I was left to be Mother to my siblings. While still in my early teens, I made 35 sandwiches a weekend so that everyone would have a lunch sandwich ready to eat when it thawed out at school. When I was 16, stupidly I ran away virtually every weekend. Got married at 18, had a baby by 19, and tried to be pre-med in college. Tried to cry through my tears, tired so that I would go to the library to study and instead, I slept there. Had a miscarriage wherein I lost a lot of blood and my ex-husband had disavowed to care for or support the baby, anyway. Divorced in medical school, devastated and lost after being abandoned in medical school, assaulted by a patient in Internship, and just did the best that I could. Good thing that my Dad taught me how to see the roses. And many thanks to the people who helped me along the way. You know who you are. 

Very very much fatigue over the last few days. Did I do too much? Did I do too little? God is in charge of my life and with the Holy Spirit as my guide, I have recovered from a cluster of rare syndromes such that I am no longer bed  bound and on an iv 24/7. We do orthostatics now, to tabulate the autonomic nervous system and whether there has been any neuroplasticity. I still feel extreme thirst and dry mouth, and am deciding on balancing efforts for one good: to figure out my fluid retention/production balance is daily. I think that is all this boils down to. Keep drinking X amount of fluid; urinate XXX amount of urine, and I'm up all night drinking the rest of the water. Now is time to sleep. May God bless you and lead you to do something with us. Tomorrow, I will tell you more. Goodnight.

Gotta sleep. Praise to the Lord, the Almighty, the King of Creation.

April 6, 2009 Day Off the PICC Line

Monday, April 6, 2009

Today is the happiest day in my life, after my child births and wedding day. My left peripherally-inserted central catheter (PICC) line was pulled out by two nurses less than an hour ago.  I am in the biggest shock of my life. 

I can move my left arm and there is no pinching on my skin, no puckering of the Tagaderm, and a simple gauze dressing over a hole in my arm. I can sit up without pulling a pump and iv tubing from behind me.....I can put on a shirt without figuring out which way the iv bag and tubing are pointing. I can move to the right and to the left and not worry about whether or not my iv line is going to get stuck on the doorknob and make me fall flat on my face.

I can move! I am free! All the work, the upkeep, and the panic levels are now decreased significantly. I can live a normal life without an iv, even though I still suffer from orthostatic hypotension and the dysautonomia. And a list of other complaints that are now in the back of my mind. I can move...and I don't have to worry about PICC line infections, accidental PICC line removal, and....I can move. 

My biceps and my calves feel like sponges, so my heart must need some conditioning. I have to figure out the things that are going to hurt me, the close calls to stay away from, and how to plug through life in a wholly new manner. I tell myself to forget about all of that for now, and revel in being free! Moving my arms up and down without feeling a twang of iv pulling my arm back. Everyone says I am a medical miracle. I am humbled and grateful, especially for all your prayers. If it had not been for all the prayers that were said on my behalf, I am certain that I would not have been touched by the feathery touch of a healing angel. 

I want to plant new plants, but I get short of breath from performing even the smallest tasks. I break out into sweats that are independent of my estrogen/progesterone levels, and I keep drinking mineral water. The iv, the bag of D5NS, the CADD pump, the batteries, and keeping one cold bag out for thawing before it enters my heart area directly. All of these are no more. I am so blessed by God to receive this miracle at this time. Perhaps God is leaving me with unfinished work, for giving my Testimony, and for blessing the name of Jesus. God Bless You while I sleep. I am sure that when I wake up, I will not remember that I am in a hospital bed. It will take a couple minutes of realization, then my place of residence and my absent PICC line will suddenly strike the memories in my brain. I will be in a confused daze of realizations, and I give God all the glory.

   

Day #17 off iv Infusion

I think my dysautonomia is 'coming out' as each day passes. It has resurfaced. When I stand up, my heart rate goes to 100 beats per minute, and I feel chest palpitations, light-headedness, and fatigue. This is perhaps the most fatigue that I have felt in years. Just t-i-r-e-d...and sleepy, and a little voice speaks inside my head. "You're getting sick again", or "You have to sit down". I do not believe that there are voices coming out of my teeth, nor am I having visions or hallucinations.

I have to listen to my body, otherwise it will become weak and frail. Having been bed-ridden for ?3 years, my body will bring me down to the ground one way or another. So far, no fainting for me. Although I've been close and seen the world spin around me. If I just squat (reminds me of 'blue baby syndrome' or Tetrology of Fallot), increased cerebral perfusion is 'felt' by me.

What does it feel like to be on the verge of passing out with changes in my body's position? Like I'd better know what is going on with my body, and that it gives me pre-warnings, warnings, and then warnings that I listen to. "Sit down" I say to myself. Buying planting flowers from my favorite nursery has given me incentive to garden again. 

Alas, my brain is ahead of my body and my body is severely limited. I am constantly "on guard" for a feeling of blood draining out of my face. People say my face is the door to my body. As my eyes get black underneath, invariably I am so, so, so tired and apparently my face looks pale, with blackness under my eyes and a desperate need to sit down or lay down now. Before I find myself with scintillating scotomata as I pick my head up off the floor. We do not like this feeling, and we do our best to avoid it entirely. 

It is kind of eerie that if I feel fine, my face turns pink. It's just like being see-through or having a constant thermometer on my forehead. You know how I feel by the pallor of my face.

Since I take a nap every day, and have done so my doctors started asking me questions today. Some of my doctors think it is a good idea to perhaps 'wake me up' with a pill in the afternoon. Cardiac side effects are similar to drinking too much caffeine, and it really bothers me to go on another pill. What should I do? The proper thing to do is to listen to my cardiologist, since he has been a literal life-saver for me. I'll see him in a handful of days. I am hoping that he will decide that my PICC line can come out. I have to wait until Monday, so that my cardiologist's opinion will determine my outcome. He knows that I am a fighter, so perhaps God will bestow another blessing and allow my condition to accelerate its repair.

My son is more like my son now, when it seems ironic to all of a sudden miss being with him. I look at his sister every day, and I remember being so broke in medical school that I drove an ice cream truck, and I cleaned toilets for a law office. We have been through our own special struggles and our own unique pains, and I am grateful that he has a good, good heart.

Go out and dance, if you can. Travel. Run with the smell of the morning's fresh dew on the grass. If you are healthy, use your body. Think of me and how I can not stay out of bed for one whole regular day of my life. My energy is sapped, and now I will sleep what seems to be an unending void of sleeplessness.

I thank the Lord for all His goodness. If this is the best physical condition I can attain, then I will be happy for small trips, for remembering my music of the 70's, and I will even get my beauty rest daily. I can live like this, if this is the 'best' that the doctors can do. I am so grateful to be alive, to have lived on the pump and iv catheter for years. And, hopefully, to get this PICC line taken out of my arm and my chest. First thing I'm going to do? Jump in our pool, and start using the lap lane we created for the pool.

BTW, my sun poisoning condition is much better. My lips and surrounding skin folds are no longer turning tingly and red, peeling after two days. My lips feel like normal, except when I get thirsty and my mouth is dry. Glory to God in the highest, who has bestowed a medical miracle upon me, and who has allowed my children to get to know me. 

I wish you all of God's speed in turning to Him for a relationship of love and acceptance. Do I care what any of you think about how my writing is? I am too old for that, and too wise besides. My role is to have fun telling you about our daily lives here, so you can appreciate your ability to drive, to take the bus, or to go for a walk. Of course I miss walks in the mountains, silly. Anybody would. But I take that energy, close my eyes, and play it safe. I would not want to be guilty of sitting in the garage with mound after mounds of popcorn on my shirt. I need to give people help, and if I am boxed in a corner, I will strive for one thing: survival.

Highest Personal Regards,

Margaret A. Ferrante, M.D.

Board Certified Anesthesiology

Board Certified, Subspecialty Critical Care

Board Certified, Forensic Medicine