Tuesday, September 25, 2007

How to Save a Life

About 8 years ago I started getting sick. It started out with really weird joint pain and progressed on to abscesses, not being able to keep any food down and other odd symptoms. We had just switched insurance carriers and luckily had a PPO, that allowed me to switch doctors as often as Leonard changed the oil in our car. At first, it was determined (by Dr. A 'as in a$$) that it was "all in my head" and I needed to "stress out less". My life, at the time was about as stressful as a Sunday spent reading a book on the couch...but I went along with him and took my prescription Celexa (for depression that I didn't have except for the depression over my health). I was still not keeping things down, but I felt better about it. I still had joint pain and abscesses, but I felt better about them too. Enter Dr's B,C,D,E. Dr. E finally sent me to a gastroenterologist, a rheumatologist, and a cardiologist. I was diagnosed with Rheumatoid Arthritis and the cardiologist said my tachycardia and arrhythmia was due to a nerve on my heart which goes off every once in awhile. The stomach problems were due to the paralysis of my esophagus...so they basically made me a new closey offy thing by wrapping part of my stomach around my esophagus (this is called a Nissen Fundoplication). I started treatment for the RA and began a course of ever changing pills for my heart. Through it all, my husband pushed me to continue going to my appointments, held my hand in countless "pre-op" rooms and advocated for me. At first, I balked against his always questioning the doctors. I was raised to not question the authority of the man/woman in the white coat. My husband was always watching the monitors, looking at the I.V., picking up my chart...and I would beg him to stop. As if we would get into some kind of trouble.

Two and a half years ago, my husband's interest in all things going on medically with me would literally save my life. Three years ago, I started not being able to keep things down again, my weight started dropping, causing the joint pain to worsen and my hair to fall out. It was decided that they would do another Nissen. Which they did. Only the recovery was a lot different. This procedure had been open, while the other had been laparascopic, they removed the NG tube the day of the surgery, where before they had removed it three days later. And, most importantly, I felt exhausted. I couldn't move my limbs to walk, I glared at my husband every time he suggested it, and I began to have difficulty breathing. When Leonard told the nurses this, they would bring bottle after bottle of saline nasal spray to me. That wasn't the problem. The problem was that I felt like I was no longer getting oxygen out of the air that I breathed. I felt like a pillow was being held over my face. Finally a resident came in and took a pulse ox. It was 71, causing them to put me on oxygen. But it still felt like not enough. They moved me from my nice, single room to a shared room and told my husband to go home. Only he wouldn't because he was worried. My heart rate had gone to 165, and I was soooo hot. I remember very little of this, only looking at Leonard and not wanting him to leave me....being afraid it would be the last time I would see him, being afraid that I wouldn't never see my children's faces again. Scared that it seemed like no one cared. They came in and said they were going to shut the monitors off for the evening because they would bother my room mate. My husband, who had spent (what seemed like) hours washing me with cold wash cloths said, "Wait! I really think something's wrong...she feels like she has a really bad fever. Please, for the love of God, help her." So they called for the residents who stood around looking at me. My husband continued to wash me and lifted the sleeve of my gown up, thus exposing the fact that my I.V. had gone sub-cutaneous (out of the vein) and that all of the fluids they had given me had, in fact, just gone into my muscle. No fluid in my body, no antibiotics to fight the infections that my RA weakened immune system couldn't fight off on their own...nothing. With that, they put me in ICU...again my husband refusing to leave me...on a ventilator and started pumping in the fluids. Without boring you to tears anymore, I got better. It was a staph infection that had gone to my lungs and collapsed them. They believe I got it in the OR. If my husband had not done the things that he always had done (the ones I told him not to) I wouldn't be here to miss him so much. I owe him my life. The moral of this story is never leave a loved one alone in a hospital if you can help it, and always ask questions...no matter how much a doctor/nurse doesn't appear to want to answer. If you don't advocate for yourselves or your loved ones, you could pay for it with your life. I thank my husband for teaching me this.

Only now, a lot of the time, I do wish he hadn't done that. I have a really hard time thinking of living without him. Most days it is because of the children that I even move. Last night I stood in the shower and sobbed until the water went cold, and then I cried some more. Today, one of his life insurance checks came in the mail and I so wish I could give it back x two just to have him back. I am aching for him today. I am hurting for him.

The last 2 years have been us planning for if the worst thing happened to me. Getting life insurance to cover the cost of a nanny for our son (our daughter is old enough to care for herself) and pay off the house so that he would not have to worry about bills in the event of my death. Today I talked with a lawyer about changing my will (me, just me all alone) so that if that happens, transitions will be smoother than they would be if I didn't. I am scared today. I am lonely today. And I didn't think my heart could break anymore than it already has. He took care of me/us. Not the other way around. He did these things, not me.

This is a picture of us on my son's third birthday...


Laurie said...

Hi, I just stopped by to see how you are doing and am glad I did. I am so sorry that you are feeling scared and lonely today. I am thankful that Leonard intervened for you during this scarey and life threatening time. My husband is the same and I can so relate to feeling like he will get us in trouble, but they know us better than the doctors. I laughed at your description of "a new closey offy thing". Your sense of humor is still in there, just a bit crushed under a heavy weight right now and I will pray hard for you to feel the Lords arms holding you tight tonight and the days ahead. I will pray that the "realness" of all the things that come to you are gentle and not crushing for you. And the Lord hold you tenderly in your aching and hurting for Leonard. I think of you often throughout the day and ask the Lord to help you along with all that you must take care of, I will pray extra hard for you. Crying is good for the soul even though it puffs up our face and leaves us exhausted and drained. It needs to be released in order to just breathe. And how is your RA doing these days? I hope it is under control for you.
Loving Hugs and Gentle Prayers for you tonight sweet lady.
Laurie in Ca.

Jess said...

I don't quite know what to say today except that I think of you very often, pray for you often and I hope tomorrow is not as hard.

Also, I am so thankful that your husband was such an advocate for your health. I love to read about him- he was truly an incredible man and husband.

Shari said...

He's still taking care of you and your family. He's your guardian angel. He always was your guardian angel. That hasn't changed.

Doctors and nurses don't like to answer to anyone but the patient. It's part of the privacy/confidentiality law. When I was pregnant with my youngest, my hubby attended a few of my pre-natal checkups. He'd ask the doctor about this or that. The doc would say, "I am not at liberty to discuss this with you." Even with me right there. Sort of like a patient/doctor privilege.

The girl left behind said...

I did a lot of crying in the shower when my sweetie passed unexpectedly 14 months ago. Sometimes I physically had to hold myself up. It's so hard. And I'm so sorry.

Jess said...

Grant unto us, Almighty God, in all time of sore distress,
the comfort of the forgiveness of our sins.
In time of darkness give us blessed hope,
in time of sickness of body give us quiet courage;
and when the heart is bowed down, and the soul is very heavy,
and life is a burden, and pleasure a weariness,
and the sun is too bright, and life too mirthful,
then may that Spirit, the Spirit of the Comforter, come upon us,
and after our darkness may there be the clear shining of the heavenly light;
that so, being uplifted again by Thy mercy,
we may pass on through this our mortal life
with quiet courage, patient hope, and unshaken trust,
hoping through Thy loving-kindness and tender mercy
to be delivered from death into the large life of the eternal years.
Hear us of Thy mercy, through Jesus Christ our Lord - Amen.
--George Dawson

rachd said...

Again I'm touched by how amazingly strong you are. You have endured so much physically and now emotionally, and yet, you're still hanging in there--even though you often don't want to. I know that feeling all too well. But, like you, I've got Miss Lil to be there for and so, I do it.

My prayers continue to be with you. I *ache* for you this evening.

P.S. Thank God for Leonard! What an amazing man who loved you so deeply!

rachd said...

That's beautiful, Jessie.

Swistle said...

I'm so glad he saved you. It's awful to be without him, but your children have you.

Shelly said...

He sounds like a truly wonderful man.

Tessie said...

It may not SEEM like you are taking care of things, but you ARE. Keep on keepin on.

Jess T said...

So wonderful! That is what marriage is about, man. He certainly was a guardian for you and your children and will continue to be.

Thinking of you today!

Thanks for sharing your stories. It keeps me in perspective! :)

Gina said...

He sounds like such a beautiful man.

I hope today was better for you, but I think there will be good days and bad days. Eventually, there will be more good than bad. I promise.