Wednesday, April 28, 2010

Doctor Visit and Decisions to be Made

Today I have an appointment with the infectious disesase doctor(s). They are the ones who decide what tests get done, and what antibiotics I should be taking. They are also the ones to evaluate the tests and determine what is going on. I have a complicated and difficult case. They have never been able to culture the bacteria that has caused my problems.
They know it's there based on the four bouts of pneumonia it has caused, the fevers and they vegetation the test showed on one of my heart valves last November. The problem is there are so many things it could be. Last time the infectious disease doctor came to the decision it was staph and had me on vancomyacin for six weeks intravenously. Since this pneumonia appears to be a relapse of that, they are thinking that was not the drug Ineeded. Problem is, again they have not been able to culture it. In the hospital I was on five different antibiotics for a week. The pneumonia responded quickly to it. I came on on two of them and today they have to decide whether to continue with these, change them or stop to try to get a blood culture showing something. This is not an exact science without the information they need.

My rib and back areas are so painful. About a month of continuous coughing which has not all but stopped. I had to call the doctor and get something for the pain yesterday. I had a better night but hubby was unable to sleep and woke me up a few times. Once I am awake I am aware of the pain and it takes time to drift off again. Good news is he was too tired to go to work and will be available to drive me to the new doctor's. Have not been to the office although I have an idea of the general area. I am hoping for answers, but the reality is the answers may be awhile coming. Sometimes you just have a bad year where you are sick a lot and those illnesses are not related (this was said by the lung doctor.) I know that my body cannot continue to recover my major illnesses just months apart. I am hoping they will find something that they can work on. I want to get back to my friends, my job and seeing family. Oh....and shopping. lol

Monday, April 26, 2010

Another lapse of work

It's official....I am out of work on temporary disability again. Until July 1st. This is so disheartening for me, even though I know it's necessary. I should be building up social security benefits and such, getting my full, not partial salary. When I return to work, I will owe them for all the benefit copays that are not being taken out of my paychecks in the months I am out. I am someone who would much rather be at work than out on disability. Still, I realize that my body just cannot do it today. I was supposed to report this morning for jury duty. My doctor faxed a latter over and I have not been able to get confirmation via phone that they received it. Just another thing to worry about...or not.

My aunt and cousin came to visit my mother over the weekend. I got to visit about an hour with my cousin and sister and a bit less time with my aunt. I am not really up to company right now. After an hour my mind wanders off and it feels like work to try to stay focused enough to participate in a conversation. I fall asleep so easily and when I can, I just want to slip away. My muscles are in a lot of pain from being strained from the coughing bouts. My back hurts also.
Well, time for a brief nap. I did make it to the hospital for a blood test this morning, actually ran into the Walmart across the street for a few minutes, came home gave myself my IV and now I am ready to kick back.

Friday, April 23, 2010

Trying to cope...

At times I feel I simply cannot go down this road again. I am having the horrible spasms of coughing and night sweats that frankly scare me to death. I wake up soaked and freezing. If I lived alone it would not be a problem, but Rob has to get up for work at 5:30 and I cannot throw the lights on and jump in the shower at three a.m. There is also a matter of my PICC line. For those of you who don't know what this is, it's a semi permanent IV in your arm. It's near the elbow which is not a comfortable place to have it. I have two dangling lines that I give myself Ivs through. I am also having to give myself shots in the fat of my belly to thin my blood since the medicine which normally does this is being interfered with by all the antibiotics. The shots themselves don't hurt but the medicine burns like a bee sting a few minutes later. I do this twice a day. The rest of the day I nod off and on. I am so weak and sick and hurting. From all the coughing I did the past few months I pulled a muscle which is very painful. I am using heat and taking tylenol. The only thing that really helps is when I take the codeine cough syrup for the nagging cough. That eases the muscle pain.

My poor Rob. He is frustrated. I had hoped he would get some emotional support from people that has not come. He called his family when I was admitted to the hospital nearly two weeks ago. Noone even called him back to see how he was doing. My family is so overwhelmed with my Dad's care and my sister-in-law's recovery. She just had a knee replacement after several other surgeries on her leg from a car accident about a year ago. My mother's sister and my cousin are coming today to try to help out. It will be the first time Mom and her only sibling will be together since their Mom's funeral and I'm sure with Mother's Day approaching it will be quite emotional. How I miss my grandmother. When I was sick she was always giving me emotional support and making me handmade cards and things like that.
Rob is wonderful. I cannot say how hard he tries to do anything to make it better for me. I am miserable though and nothing helps right now. Food is a huge turnoff once again I have trouble getting anything down or if I do it's such a small amount. I still have weight to spare thankfully because I am down nearly fifty pounds from my highest weight five years ago. I am down about thirty-five since last September.

I wish I could say things are going great. I know they will get better and each night I pray I will wake up without coughing so much or in a sweat. I believe everything in life is to teach us lessons and I have had to repeat this class since last Sept and November and I must be missing something.

Monday, April 19, 2010

Returning Home.......

Saturday a week ago (April 10) I had to go to the emergency room of the local university hospital. To say I was sick would not begin to describe the condition I was in. I was coughing up blood, gasping for breath and quickly after arriving to the ER (where they whisked me right in, no waiting) I learned I had pneumonia completely in the right lung and seven huge areas of pneumonia in the left lung as well. I had a temp of about 103 and I was told by hospital personell that I looked horrible. At this time they called in a new team of pulmonologists and infectious disease doctors. I was just released this afternoon. I had another PICC line put in on Saturday. I will be on home IVs again for several weeks as well as some very potent oral antibiotics. I learned today that I am on the best one for lungs and that the cost was over a thousand dollars for the rx. Thank goodness for health insurance.
I am still coughing and will be for awhile. I am weak but at least aware of where I am. Last week I have no real memories of my first days of hospitalization although I had many procedures done to determine that the infection was not in my heart valve. They believe it is not there but are treating the infection as aggressive which it has been. This time they are going to do their best to completely knock it out.
I will write more later in the week. I'm still fuzzy.

Friday, April 09, 2010

And the fourth time in ten months................

Yesterday I went down fast and hard. Previous days had me feeling semi alright until about dinner time. My fever began about eight, broke during the night and the daytimes were better. Until yesterday. Yesterday I woke up feeling poorly and called and left a message for my doctor who has seen me twice in the past ten days. My fever started by 1 p.m. and was rising rapidly and I felt horrible. After waiting for hours and not receiving a call back, when Rob arrived home I told him I needed to go the ER. (I never am willing to go to the ER unless I fell I am in real jeopardy so Rob knew I was not good. We arrived there at six p.m. and they made me wear a mask. Hard enough to breathe without the mask but I am usually an easy patient. I got back into the room within an hour and they were drawing blood (cultures as well) and sending me for another chest xray. The doctor saw me coughing up stuff and took a sample of that as well. It turns out that once again I have a pneumonia. This one is in my right lung where all the trouble started to begin with. In the same spot. The blood counts showed an infection and the number had increased a few thousand since earlier in the week. That's not terrible. I was given a prescription for antibiotics and sent on my way. My doctor had returned my call about SEVEN p.m. leaving a number where I could call her. I think I need a new doctor. I am going to start looking. She knew that I was really sick and I have a big problem with her waiting six hours to return the call. Am I being too hard on her?
When I spoke to the girl at her office I explained that I needed to speak with the doctor. Could it be the person relaying the message didn't do it clearly or promptly? When I was there on Tuesday, the doctor told me someone would come to take my blood work in a few minutes. About half an hour later I left the room and tried to find someone. The office was nearly empty and they had no idea I was waiting in that room. (Mind you, after the blood work was taken I was going to the hospital for a chest x ray.) The doctor had left for the day. If I were not so sick, it wouldn't be a big deal but I feel I am seeing a pattern of inconsideration and/or disorganization. Please tell me, am I over reacting?
Thank you all for your good wishes. I am hoping that once I get this knocked out it will be an easy Spring.
One thing that looms is the possibility that the heart valve infection is still there and causing yet another sickness. It will take time and patience to find out.
Rob went yesterday and picked up our tax forms. I am getting a refund. That will compensate me for the three and a half sick days I just took which will be unpaid.

Wednesday, April 07, 2010

Surprise Surprise

I know this will come as a great shock but I have been sick again. OMG I am so sick of being sick that the word sick makes me angry. For the past ten days I have coughed literally hundreds of times. I have been given dirty looks by people and have explained at length that I have bronchitis which my doctor assured me was not contagious. I have come home from work for the past week, eaten a light dinner and headed off to bed. Even sleeping ten hours a night didn't seem to help. I finished the antibiotics and yesterday afternoon I just had to go back to the doctor, leaving work early. The doctor heard noises in my lung again. She sent me to the hospital for a chest x ray which thankfully showed NO pneumonia. The blood tests did show another infection. I am tapering off steroids and now on yet another antibiotic.
Last night I was so sick I actually felt like it might be the end. Sicker than I felt in the hospital with pneumonia and the heart infection. My temp was rising and I guess it broke in the middle of the night. I awoke to a pool of sweat and my entire body and pajamas were as wet as if I had just climbed out of a pool. I am running a low grade fever and I am waiting for results of the blood cultures. Hopefully they will show nothing.

I have told Rob many times that I have a different take on life and leaving it. When I was just 23 years old I learned I had cancer. At that time the treatment was massive radiation. I now deal with the damage of that radiation and the loss of my spleen at that time. It has been a constant battle with dealing with health issues and determining that I would have a quality to my life. I have enjoyed my life despite the health battles. To survive cancer and have 32 extra years is no small fete. I have undergone surgeries and had to have a heart valve replacement. That was catastrophic in many ways. I am still forging on and I will for as long as I can. Having said that, I have enjoyed so much in my life, never taking one day for granted. I will never cry because it's over but I will smile because it was. I hope that when I am gone people won't remember the surgeries and the illness but they will remember my smile and laughter. What a long, strange trip it's been and I wouldn't have wanted to miss any of it.