Monday, January 31, 2011

Sleeping Sickness?

For the first ten days home from the hospital I was unable to sleep more than two hours at a time. Coughing kept waking me up and laying down seemed nearly impossible. For the past three days I have slept about eighteen hours each day. I did wake up this morning at four with a coughing attack that actually got my chest aching. You can still here congestion in my lungs and I cough up so much stuff on an hourly basis. I must be continueing to make it. Lat night I also woke up drenched from head to toe, even the sheets. This concerns me as it kept happening when I had the infected heart valve. I see the pulmonologist on Thursday. She has me scheduled to return to work March 7th. Right now that feels so close. Of course, if necessary, that date can be pushed back. I find that each bout of this illness leaves me weaker and the recovery slower and more difficult. I have learned that I have small lungs, that they no longer yield a normal x ray even when I am doing well. When I was in the hospital I was in "serious" condition. I wish there were a magic pill I could take to guarantee I not have to go through this again. Not being able to breathe is miserable. Coughing until you gag is miserable.
I feel isolated here but I am not up to going anywhere or visiting people. Tonight a neighbor showed up with a few bags of fresh produce and fruit and cheese. I so appreciated that gesture of thoughtfulness.
Today is my sister's birthday. Thursday is Rob's. I sent my sister a card and check last week. I am trying to think of something for Rob. My brain seems disconnected. I know, this too shall pass.

Sunday, January 23, 2011

Home Again but still sick

I was released from the hospital on the 20th I believe. I begged my pulmomologist to let me leave, and she did, without full support from the ID doctor. I have paid for that and in hindsight, I should have stayed a few more days. Rob is wonderful but he has taken off so much time already to help me and I insist he go to work. I have visiting nurses but they see many patients each day and don't spend a lot of time, although I am encouraged to call them with any questions or if I want them to come at any time. This is old school for me. Thing is, the other two times I came home with a PIC line I just had to give myself two ivs of vanco twelve hours a part and one shot a day of Lovenox. (This is a blood thinner that is injected into belly fat. For some reason at times it is very painful and minutes later feels like the sting of a wasp.) My stomach looks like I took quite a beating. Still, as of Friday my blood was not thin enough which poses a danger to the heart valve, so I continue getting two painful shots a day. The ivs are two that are twelve hours a part but the other must be given four times a day, every six hours. This is a new antibiotic they have me on. The antibiotics that worked in the past failed this time. What I did have going for me was that I went to the doctor early on Monday and was on oral antibiotics until Thursday when they sent me to the ER to be admitted. At that time my fever was steadily going up. The chest x ray showed a very minor pneumonia in one lung but the CT scan showed it was in both lungs as well as a lot of fluid.
On my home regimen I am also received three breathing treatments each day. To be honest, they reduce the wheeze but I still cough, a lot.

One thing I value is that I am always open and honest. I am very discouraged right now. Firstly, this is my fifth bout of pneumonia in just under 18 months. FIFTH! This was my fourth hospitalization. This time I had fluid around the heart which I have not had before. It takes me longer to recover and it's hard to motivate myself right now. My lung doctor is wonderful. She understands and spent extra time talking to me, trying to encourage me. She shares my concerns though. One night she had them bring me a small bottle of wine with my dinner as a reward for fighting so hard. I consider her and Rob my support team. In this world good, dedicated and caring doctors are not easily found. I let her know constantly how much I appreciate her.

I am still waiting for forms from my company that were being overnighted to me on Thursday. Until then, I cannot file my short term disability papers and that means at least a month until I get a check once they are filed. Thank goodness we have an emergency account we can hit. Since it was the new year insurance wise, I had to pay several hundred up front for meds and such.
Well, I had only a few hours sleep last night. I couldn't sleep laying down and I sat up in a chair for the sleep I got. Sometimes I wish I had a hospital bed here so I could raise the head when having breathing issues. I never gave it a thought until I had the lung issues how difficult it makes your life. Walking short distances leaves me gasping or coughing. It is my fervent hope and prayer that my lungs will improve. I just hope I can be patient enough until that happens.

Monday, January 17, 2011

Nelle Update

Hello all, Rob here.
Nelle was admitted to Robert Wood Hospital on Thursday with Bilateral Pneumonia, and fluid in both lungs. Also some fluid around her heart. She has been receiving IV antibiotics and some breathing treatments.
Her Pulmonologist is happy with her progress and she may be sent home soon with a PICline so she can receive IV Anti-biotics at home.
She has no computer in her room but can receive emails on her Blackberry via her addy.

Sunday, January 09, 2011

Saturday Snow and Sunday Sunshine

Yesterday I had so much to do. Jumped out of bed bright and early and we began taking down the Christmas tree. When we finished with that we made a trip to the mall where we picked up a few gifts and had lunch. My childhood best friend's daughter just had a baby herself. It seems like not so long ago I got the call from her mother's delivery room telling me she just gave birth to a baby girl. She had a son and was so thrilled to be having a daughter. Her daughter had the most beautiful pictures taken and a video done. What a treasure that will be for years to come. Yesterday I was able to purchase some really cute clothing for her baby and it was fun. The snow began really falling and sticking and we cut our shopping short and came home. We continued putting away so many little decorations. Each year I receive more as gifts and at times I find it overwhelming what to keep and what to get rid of. I have many ornaments from friends and family members over the years that each inspire a memory. My favorites are the ones my grandmother made for me. They contain a silver coin from our birth year and she pained our names on the plastic cases. It was so hard not to have her this year. I still miss her terribly and feel the void left by her passing. Ironically, in my garage, I found the tiny pinafore apron she had made for me which matched hers. It had Santa coming out of the chimney.

I have struggled with my breathing this week. Most mornings I am coughing up blood when I initially wake up. I have an appointment to see my regular lung doctor on Thursday. I saw her associate ten days ago and the antibiotics he gave me did nothing. I am still coughing and feeling tired. I have also learned that the heart infection I had in my vitral valve last year has damaged it, causing a thickening which is causing valve regurgitation. I see the cardiologist later in the month and we will discuss this further. Apparently the problem with the heart not pumping well is causing the lungs to remain wet and vulnerable to illness. It's like a puzzle, with so many people trying to assemble the pieces and see the overall picture.

Well, I need to go grocery shopping. I am thinking a bit pot of chicken soup might be in order. It's really cold out the but sun is shining brightly. My New Years Resolution is to try to see the good, even on the cloudy days.