As most of you readers know I created a private journal and for those of you who read that you already know what I am about to share here.
Since July I have blogged about the constant sickness I have endured. When I think back it all began in July following a dental cleaning. It started out with a rash on my leg which I was given cream for. Thing is, the rash was warm to touch and quite large. Hindsight is 20/20. I was diagnosed shortly afterwards with pneumonia and given antibiotics which were appropriate for that ailment. This was confirmed by xray as well as my later diagnoses. Since July I have been fatigued and short of breath. About two weeks ago Tuesday my internist requested another CT scan with contrast to see what my lungs looked like since I was not getting better and now a low grade fever and nightsweats had been added to my ailments. The CT scan showed a new pneumonia and plural effusion. I made an appointment with a lung doctor I saw the following Friday. He told me to go to an ER and get admitted that I needed intravenous antibiotics and that it was not normal to have pnemonia and breathing issues so frequently that something else was going on. I went to the ER and was admitted. They did more xrays and blood work and saw that my white count (indicating infection) was up again. The lung doctor was called back in and this time they added an infection disease doctor, a wonderful woman Dr. D. She immediately began to research the past and explore possibilities. The lung doctors were also helpful in ordering more tests and suggesting things. They did an echo on my heart and the results were nothing special but at that time they called in my cardiologist of five years Dr. Jack. You have to love this man. Dr. D had talked about an ETT where they basically go down your throat and use a sonogram type device to see the heart much better. Since I have an artificial valve they felt this should be done although none of them felt the odds were great that this was the problem. Dr. Jack said since several of them had thought this was something that should be done and I had the artificial valve he suggested we do it. The following morning I was taken for the test and although another doctor performed it, Dr. Jack was there and observing for himself. They found what the problem was. Irony of ironies, it was NOT the artificial valve that was infected but another valve, the mitral valve. Yes clearly there was something growing on it. That had been spilling into my blood and lungs causing problems. The few weeks I was on antibiotics got me a bit better until the last four weeks when things became even worse. I was relieved, yet scared, to know the diagnosis. What this meant was the following morning I had to have a PICC line inserted as I would need intravenous antibiotics for the next six weeks. I was given options. I could go to the hospital twice a day to their infusion clinic (visits had to be twelve hours apart) and spend a few hours there each visit OR I could have some nurses come to my house and teach me how to care for the line and do the infusions myself. Moment of panic set in but then I remembered that when my son was on chemo I had cared for his line, flushed it and this would be similar. I had the nurse come and the supplies were delivered shortly after I arrived home Friday in the afternoon with my new line in my arm. A hole in one's arm causes quite a bit of soreness. Kathy, the nurse showed me how, sat with me for the hour and a half it took for the infusion, showed me how to do the final flushes and close the line back up. Saturday and today I did all the treatments on my own, although a nurse did come to change the dressing on Saturday. That I am not permitted to do.
I am hoping/praying/meditating that these antibiotics will take care of this.
If not, I will have some serious decisions to make. Periocarditis is not something one can ignore. It's too soon to be feeling better but I can breathe easier. The fluid that was in my lung is gone now. I can walk upstairs without nearly passing out. I feel I am on the road to recovery. At times I become overwhelmed thinking about my grandmother who is no longer here to offer me her support and unconditional love. The thoughts of what could be are a dark place I don't want to visit. I've had open heart surgery and a valve replacement.
Positive vibes, caring thoughts and prayers are welcome. I will keep you updated as I can. I have to go back to the hospital tomorrow for bloodwork and will need that twice a week for the next six weeks.
Mostly, I am so grateful that the team of doctors found what was wrong and hopefully in time for the antibiotics to work and fix this problem once and for all. Either way I know this: I am one tough cookie. I will do whatever it takes because I love life and I'm not going to leave it without one hell of a fight. That you can count on.
5 comments:
Wow. Know that we are thinking of you with all our fingers and toes crossed. A diagnosis is a good thing as it opens the door for resolution. You certainly have been going through a really rough time. I am sending you healing throughts.
Virginia
OMG! Thank goodness they found out the problem! Keeping you in my prayers.
You are number one right now. Focus on getting better. Hang tough and don't let this get the better of you. You will be in my thoughts.
You are in my thoughts and prayers. Please know I will be praying for you.
Hugs,
Pat
As Terry says, please do focus on yourself and your health. You are always so focused on others. It's your turn now.
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