Monday, November 18

Life challenges

This has a challenging year for me to say the least.

My dad was diagnosed with lung cancer in the fall of 2012. He was hospitalized shortly after that diagnosis with some other serious health problems. We came close to losing him. He recovered and began cancer treatments through late winter. Options were limited because of his other health issues. When he went back for a scan in May, it showed that the lung cancer was growing and had spread to his bones. The oncologist said 3-4 months. That's a very hard diagnosis to hear.

My dad decided to try "mild" chemo treatments. I don't know how mild they were as after only two treatments he was very sick. He discontinued treatment. It was about a month before he felt better. My parents called in Hospice for assistance.

He remained at home and kept to his usual routines. He lost a lot of weight but seemed fairly healthy. Three months and then four came and went. Five months and things still seemed ok. I talked to him almost every day if I didn't see him.

On October 28, hubby and I headed out of town for a work conference. While we were out of town I started having an itchy rash on my leg. A local pharmacist recommended I try a hydrocortisone cream. After a couple of applications, the cream burnt my leg. I called my dr and set up an appointment for when I was back in town.

Wednesday evening we returned home. It was too late to call my parents. Just before 6 am the next morning (Halloween) the phone rang. My mom said to come that my dad was dying. I jumped into my clothes and made the drive to their home with tears running down my face the entire way. Good thing there wasn't much traffic at that hour of the morning.

My dad was in bad shape. He did not pass that day. My mom told me he was confused on Monday. Tuesday she found him sitting in the living room in the middle of the night. He had managed to get out of bed and walk to the living room without the aid of his walker. He had no idea why he was out of bed. By Wednesday he was so shaky that he couldn't get out of bed.

I stayed for hours until my mom sent me off with orders to go to doctor. She was concerned about the look of my leg. My appointment was for the following day but given what was going on I didn't know if I would be able to make it. I stopped at my doctor's office. She wasn't working but they would work me in with another doctor. When the treatment room door finally opened it was my doctor who stepped into the room. I was surprised.

She wanted to know the history of the injury. I told her that I had originally injured that leg in September. I walked into a stake in the garden and bruised and skinned my leg. It didn't bleed. My tetanus shot was up to date. I cleaned the area and applied antibiotic cream for several days to be safe. My leg was sore for awhile because of the bruising. It healed. Then it broke out in a rash and I applied the hydrocortisone cream. (I had a previous reaction to a hydrocortisone cream that I had forgotten about.) I told her the cream had burnt my leg. I tried washing it off but there is no way to remove it once it is on your skin.

She was concerned because it looked so angry. She brought in another doctor and they started tossing around words like MIRSA, Lyme disease and cellulitis. All of these are serious and I began to get worried. Though I did remind them that I thought this was a simple burn or allergic skin reaction. They weren't listening. They put me on antibiotics (which since I am allergic to a bunch of them was not going to be fun for me) and sent me off to get a Lyme disease test.

After 3 days of antibiotics, the pinkness was spreading. It was the weekend so I called the on call dr. She told me to go to the ER. At 7 am on Nov 3, hubby and I went to the ER. The hospital dr agreed that I had cellulitis. Everyone kept asking me if I was diabetic because of where the injury was but I am not. Hubby went to get some lunch and my SIL arrived. Thank God she was there. My phone rang. It was my brother telling me to come as my dad wanted all his kids there and was ready to pass. I told them I couldn't come because I was in the ER. They had me talk to my dad. I was in tears and almost hysterical by the time I got off the phone.

It was about 3 pm before they finally moved me to a room. The hospital was full. They ran about every blood test known on me as well as an ultrasound of the circulation in my left leg. All tests came back normal. My temp was normal. I didn't have Lyme disease. I felt fine except for the red leg. I was beginning to wonder what was going on.

Cue the IV antibiotic treatment. Shortly after the antibiotics entered my system I developed what they call redman syndrome. My face and ears turned red and burned and I broke out in irregularly shaped blotches. They assured me it was a common side effect. A couple hours later they gave me a different IV antibiotic. As I remember, the redness on my leg wasn't getting better. So on to treatment #3, #4, and #5. They put me on Benadryl. That didn't seem to help much. I asked when they were going to stop the antibiotics and they said they didn't know. There was at least one more scheduled when I finally called a halt. My skin was on fire and felt like it was humming. They wanted to put a topical antibiotic on my leg as they were still convinced I had cellulitis. Since I was already reacting so badly to all these meds I asked that if they had to do it to only do a very small patch.

The on call dr talked to me after I refused the meds. I asked her if I did have cellulitis was it a bacterial infection and was it staph or strep? There was a long pause and then she admitted that my dr wasn't sure what was going on. WTF?! They were guessing at worse case scenario.

They kept me overnight to make sure I would be ok. I was so uncomfortable by Tuesday morning from the scratchy bleached sheets and everything else that when my dr walked in my room and saw what I looked like that it didn't take much convincing that I would be safer at home. They checked me out in record time. The nurses felt so badly that I was leaving worse off than when I checked in. My dr scheduled me for appointments with a dermatologist and an allergist. I have had allergies for years though my dr didn't think they were serious enough to send me to a specialist. It's one thing to tell them about it, it is another thing when they see it with their own eyes.

All during the period I was in the hospital my dad was sliding downhill. I was frustrated because I couldn't be there and help. My mom told me to take care of myself.

By this time, my entire body was broken out. Not in hives but in about any other type of rash, bump, and blister that you could think of. My ears were swollen to twice their size. I was so uncomfortable and itchy. My skin could barely tolerate loose cotton. I was afraid to take anything. My usual lotion was making things worse. Some scented fabric softener scent set me off. I was hyper reactive. I couldn't wear my wool socks or shawls as even merino felt like steel wool to my skin. I tried to knit to soothe myself and my hands broke out from the cotton I was using.

The next day I went to the dermatologist. Getting dressed in street clothes wasn't fun. My skin was burning up. He wanted to put me on cortisone for the drug reaction. I refused and he said he totally understood after what I had been through. He looked at me and had me go through the story from the original garden injury to the present. He told me that we would never know if I did have an infection. Here is what he speculates happened: The Bacitracin I had used on the original injury triggered a delayed allergic response probably due to all the stress I was under. That's what caused the rash while I was out of town. Then I had a reaction probably to a preservative in the hydrocortisone cream for the itching which caused a skin burn. Yes, the skin would be red, irritated, and itchy after suffering two different allergic reactions. Then add oral antibiotics to the mix which caused even more irritation to my leg capped off by 5 IVs of two powerful antibiotics that basically fried my left leg from knee to toes and triggered a systemic drug reaction. The more they treated it the worse it looked. Everything began to make sense.

I really can't fault the drs and hospital. They did what they thought best given what it looked like. It could have been a serious infection. If they had all listened closer to what I told them about the skin burn, things might have ended a lot differently. (My husband and two different doctors said it was the perfect storm. If any one thing had happened differently, the result would have been different.) We also wouldn't have a lot of medical bills to pay that our insurance won't cover.

In the meantime, I have been trying to nurse my skin back to health. I have never itched so much in my entire life! Both of my arms put off heat for days like they had been badly sunburnt. My ears were swollen to twice their size and hot. Other parts of me were covered with blotches and blisters. My scalp itched. My hands broke out like I had poison ivy.

I digress. While all this was going on my dad was getting worse. On Nov. 6, Hospice offered to take my dad to Hospice House for 5 days. Too late. It would be too painful to move him. Some other help was finally set up to help with my dad's care. My mom, brother, and SIL were worn out. Key in more guilt for me as I was unable to help.

Sadly, at 7:30 pm on Nov. 7th, my dad passed from this life. The funeral was on Nov. 9. I did manage to be there. Everyone was appalled at how I looked. My hands swelled up from shaking hands and touching people. I was hyper reacting to everything! I took my rings off while I could. (Today, Nov. 18, my hands are almost back to normal and I was able to put my wedding rings back on.)

I have to say I have never been so miserable in my entire life from both a physical and emotional standpoint! I was finally able to start taking antihistamines a few days ago. That has really helped speed up my skin healing. It's still going to be awhile before it is back to normal, especially my left leg. I remain very itchy. My skin is peeling. The rash comes and goes. My skin has smelled like drugs for 2 weeks now. It seems to be coming out every pore in my body.

I have to go back to the dermatologist for skin patch tests. In a couple of weeks I will see an allergist for testing. Both of these are probably long over due for me.

I was finally able to knit yesterday for the first time in weeks. I am 3 weeks behind on everything. Two test knits closed while I've been out of touch. There are new patterns I haven't blogged about. My design mojo has abandoned me at the moment. I'm trying to help my mom with details that need to be taken care of and catch up with the loose threads of my life. I've been able to leave the house for short periods the last couple of days. I don't have much energy right now.

I have talked and texted a lot with friends and family throughout this whole ordeal. They have kept me sane. People who know me online have sent well wishes and prayers for my recovery and sympathy for my dad. It has helped me get through this. Much love and many thanks for your concern. 


Anonymous said...

After reading your post all I can think of is "O my Goodness." What a terrible set of circumstances for you to have endured. I hope that your recovery from the physical part is soon over, obviously you have been beyond miserable. I send you thoughts of sympathy about your dad, I am so sorry for your loss.

Cindy/KS said...

I am just now reading this and I feel for you! I have lots of allergies myself and this summer I had a repeat of 1 from a few years ago where I was breathing dust after plaster was taken off walls - wheezing, etc. from it. Thought I was recovering and then the grass near my job was being mowed as I went to work 1 day. Within minutes the right side of my face turned red, my right eye started watering & burning,etc. I almost couldn't drive home afterwards. Had to take the next day off from work to recover. Good part of it was my boss went from being hard to get along with to being much kinder after seeing that I continued to try to work with all this happening. I now believe that I will never feel like I can enter the house that our daughter bought & is remodeling without fear of this happening again. I also feel for you in the loss of your father - I have lost 2, but thank goodness I didn't have a flair-up of my allergies to deal with while dealing with it!