Until recently, I’ve had a rather simple time.
Until recently, I’ve had a rather simple time. Then about 4 weeks ago I began to have more breathing issues. I gradually had to increase my O2 intake, and then 2 ½ weeks ago it got so bad that I had to be admitted into the hospital, (11/1). I just got discharged from UMASS Hospital Tuesday, (11/13).
I was admitted with bacterial infections (a type of pneumonia) AND a major flair-up of alveolitis. I was treated for 10 days with heavy doses of antibiotics, to fight the infection... then they saw that my red cell count had fallen very low. They did a bone marrow biopsy and the results are that this condition is "Anemia of Chronic Disease". I received 2 units of blood and that got the count up to a better level, although it is still lower than it should be. The Hematologist / Oncologist that treated me was concerned that my bone marrow might have been damaged by the Cytoxan during the SCT. Thankfully, it seems that that is not so. I am on 4-6 liters of O2, 24 hrs / day. My oxygenation has been up and down but the oxygen is needed because I just don't get enough volume into my lungs. A couple of times they had to put the mask on me and pump in 10 liters a minute. I can't walk to my bathroom without needing 15 minutes to recover - and that's with O2 running.They sent me home because there isn't anything they can do for me in the hospital. Robbi got a hospital bed delivered and I'm just glad to be back in the house.
We have been working out the logistics so that I have sufficient O2 to get out of bed and walk to the bathroom. Sometimes I use the urinal bottle, in bed, so that I don’t have to struggle to catch my breath with high volume (10 ltr/min) O2.
I am officially retired from my business, as I can't keep even simple appointments. This is a difficult decision for me but it will allow me to focus on my family’s needs. My business was more than a job – it was an extension of who I am. I loved helping people with their technology issues, and we developed lasting relationships. I know their children and pets… we talked about our lives… many of them would feed me while I worked away on their computers. When Robbi and I asked for help to raise funds for the SCT, many of them not only contributed – they took active rolls as fund raisers. I am grateful for my family, friends, and community.
I'll be starting up on Cellcept in a few days. The liver counts are slightly elevated so my doctors wants to stabilize them before I begin the chemo. The dosage will be higher than I had last time I took it – last year. If all the alveolitis turns to fibrosis, it will be real bad. I can hardly talk for a few minutes without coughing away. After all my concerns about the bone marrow biopsy, I was fortunate to have a very simple procedure with very little pain. For most people it is painful. I was so anxious that I had them give me a double dose of sedative. I am a baby after all. Now that I’m home I spend the whole day in bed. I get up to go to the bathroom.
Last nite, I ate dinner with Robbi, Jayme and Emily, at the table. My stamina was so low that I had to go right back to bed and I coughed for about 15-20 minutes until the O2 settled me down. It was the first time we were all together in the last few weeks, so it was worth it.
We have a visiting nurse each day, for a week or two, to monitor my vitals, (BP, pulse, fluid retention, oxygenation level, etc.). I also have an aide who comes in to help me take a shower - it's just too exhausting to do it myself.
I'm trying to gain some strength so that I can do more and Robbi will need to do less. It's really important for her to have some independence. She also has work to do! She is the only earner in this house now.
Once I begin to get the chemo, it will take 4-8 weeks before we can expect to see any results. Even then, the results are unpredictable. The last time I took Cellcept the Pulmonologist saw slight improvement in my breathing. It didn't clear up any of the fibrotic tissue, but it seems to have eased the swelling (alveolitis) in the lungs. If we get that kind of result again, it would ease a lot of the problems I have had this week.
Stay tuned... lots of work ahead...
I was admitted with bacterial infections (a type of pneumonia) AND a major flair-up of alveolitis. I was treated for 10 days with heavy doses of antibiotics, to fight the infection... then they saw that my red cell count had fallen very low. They did a bone marrow biopsy and the results are that this condition is "Anemia of Chronic Disease". I received 2 units of blood and that got the count up to a better level, although it is still lower than it should be. The Hematologist / Oncologist that treated me was concerned that my bone marrow might have been damaged by the Cytoxan during the SCT. Thankfully, it seems that that is not so. I am on 4-6 liters of O2, 24 hrs / day. My oxygenation has been up and down but the oxygen is needed because I just don't get enough volume into my lungs. A couple of times they had to put the mask on me and pump in 10 liters a minute. I can't walk to my bathroom without needing 15 minutes to recover - and that's with O2 running.They sent me home because there isn't anything they can do for me in the hospital. Robbi got a hospital bed delivered and I'm just glad to be back in the house.
We have been working out the logistics so that I have sufficient O2 to get out of bed and walk to the bathroom. Sometimes I use the urinal bottle, in bed, so that I don’t have to struggle to catch my breath with high volume (10 ltr/min) O2.
I am officially retired from my business, as I can't keep even simple appointments. This is a difficult decision for me but it will allow me to focus on my family’s needs. My business was more than a job – it was an extension of who I am. I loved helping people with their technology issues, and we developed lasting relationships. I know their children and pets… we talked about our lives… many of them would feed me while I worked away on their computers. When Robbi and I asked for help to raise funds for the SCT, many of them not only contributed – they took active rolls as fund raisers. I am grateful for my family, friends, and community.
I'll be starting up on Cellcept in a few days. The liver counts are slightly elevated so my doctors wants to stabilize them before I begin the chemo. The dosage will be higher than I had last time I took it – last year. If all the alveolitis turns to fibrosis, it will be real bad. I can hardly talk for a few minutes without coughing away. After all my concerns about the bone marrow biopsy, I was fortunate to have a very simple procedure with very little pain. For most people it is painful. I was so anxious that I had them give me a double dose of sedative. I am a baby after all. Now that I’m home I spend the whole day in bed. I get up to go to the bathroom.
Last nite, I ate dinner with Robbi, Jayme and Emily, at the table. My stamina was so low that I had to go right back to bed and I coughed for about 15-20 minutes until the O2 settled me down. It was the first time we were all together in the last few weeks, so it was worth it.
We have a visiting nurse each day, for a week or two, to monitor my vitals, (BP, pulse, fluid retention, oxygenation level, etc.). I also have an aide who comes in to help me take a shower - it's just too exhausting to do it myself.
I'm trying to gain some strength so that I can do more and Robbi will need to do less. It's really important for her to have some independence. She also has work to do! She is the only earner in this house now.
Once I begin to get the chemo, it will take 4-8 weeks before we can expect to see any results. Even then, the results are unpredictable. The last time I took Cellcept the Pulmonologist saw slight improvement in my breathing. It didn't clear up any of the fibrotic tissue, but it seems to have eased the swelling (alveolitis) in the lungs. If we get that kind of result again, it would ease a lot of the problems I have had this week.
Stay tuned... lots of work ahead...
posted by DesktopDavid at 5:03 PM
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