Friday, August 31, 2012
Update
I was discharged on Tuesday and instructed to monitor everything closely and if fever should reappear, back to the ER. I had blood work done on Wed. and the scores were great. While in the hospital for 8 days ,I had IV antibiotics, 3 neupogen shots to stimulate the production of stem cells, and 4 IV's of immunoglobulin over 4 days to shore up the antibodies. The net result, the infection seems to be gone, and no temperature for several days. I lost upwards to 23 lbs and the appetite is still not back. They have included an antidepressant to help cope with mood and a sleep aid to get rest and physical therapy for rehab and we will seek out a support group to help me get over this. It is quite a wake up call. We will keep you posted and thanks for all the support and prayers.
Tuesday, August 28, 2012
I Got Knocked Down
It seems like it should be different. It should look a whole lot rosier, but it is not. I have totally lost my appetite. I have lost 20 pounds in the last 3 weeks.There is just no hunger. I also cannot sleep. I have used sleep aids for 3 nights now. One night it never phased me . Last night they switched to another brand and I did get some deep sleep for about 3 hours. I have been having headaches and at 4 this morning I had to take something for it, it was so bad. I am scheduled for my last of 4 immunoglobuulin infusions today. I have no temperature, but still have a runny nose and a cough. The neutrophil count is still low despite 3 neupogen shots. They hope it is all headed towards my system handling it with all these boosters. I got to tell you it doesn't feel that way. The doctors have assured me the stem cell transplant is doing well. So why am I so down? I should be celebrating new life. As I thought about all of this the other day I began to think of Josh. Remember his line?
It was his mantra. The gift of life should have been his and not mine. I thought I had cone to terms with this survivors guilt, and yet it all seems to fit that I don't deserve this chance. And it all gets pretty raw. Rationally I know I do not need to feel this way. I also am not a totally rational being and it is amazing how deep the feelings and emotions can control behavior. Weight lose, appetite lose, insomnia, an infection, despondence ,severe headaches - it's time to get some emotional support. Isaac has been pushing for that for some time and Lynne agrees that I get some help in this area. If I were to look at myself as though it were a case study, it's a no-brainer. I tend to want to handle it myself. So Josh's mantra has a lot to commend itself to me, to get up, to keep going .
This blog has been several days in the making. I came into the hospital on Aug. 21st. Today is the 28th. Maybe today. Maybe tomorrow. It has been a long haul. "It's time to get up again". Lynne has spent her birthday here at MD Anderson the last 3 years, once with Josh and now 2 years with me. It's time to change this.
I get knocked down, but I get up again
You're never gonna keep me down
It was his mantra. The gift of life should have been his and not mine. I thought I had cone to terms with this survivors guilt, and yet it all seems to fit that I don't deserve this chance. And it all gets pretty raw. Rationally I know I do not need to feel this way. I also am not a totally rational being and it is amazing how deep the feelings and emotions can control behavior. Weight lose, appetite lose, insomnia, an infection, despondence ,severe headaches - it's time to get some emotional support. Isaac has been pushing for that for some time and Lynne agrees that I get some help in this area. If I were to look at myself as though it were a case study, it's a no-brainer. I tend to want to handle it myself. So Josh's mantra has a lot to commend itself to me, to get up, to keep going .
This blog has been several days in the making. I came into the hospital on Aug. 21st. Today is the 28th. Maybe today. Maybe tomorrow. It has been a long haul. "It's time to get up again". Lynne has spent her birthday here at MD Anderson the last 3 years, once with Josh and now 2 years with me. It's time to change this.
Wednesday, August 22, 2012
Bad News - Good News - Bad News
In the last blog I wrote that was struggling to fight off this cold or flu. Well, Tuesday the temp began to go up and about noon and one o'clock it hit the 100.5. So I called Isaac and I started packing. I am again a patient at MD Anderson. The lungs are clear. Tests have been taken. Blood samples drawn and the neutrophil count is extremely low, they are those first responders in there to defend when an infection sets in. There is not enough of 'em, just not enough. So here I am in the hospital, IV pole is crowded, and "Mash" is on TV.
I had so hoped for better. Maybe this will be the last time.
Tuesday, August 21, 2012
Bad News - Good News
It's the bad news - good news story. Let me explain.
It started about 10 days ago, a little sniffle, a slight runny nose, nothing more, no elevated temps, probably allergies, take some Claritin. It didn't help and persisted for 4 to 5 days and I had an appointment so they ran all the tests and put me on Tamaflu and Levaquin and see you in a week. After that I had some reactions to the Levaquin and got that settled. Then I began to have some temperature rises. The last thing Dr. Khouri said to me in the office was, "If you get a temp. Go to the ER"! For me that is 100.5. I am still immune suppressed and it is always a question of "How much can I handle?" For the last 6 days I have been taking my temp frequently, watching it go up and down. I has been at 100 on at least 2 occasions. Yesterday it was 98.7, last night 99 and this morning back to 98.6. Isaac has been listening to the lungs and they have stayed clear. Pneumonia is one of my biggest threats. Isaac put it into perspective. "Any other time you would have been in the hospital and this is a big step that you have held your own." I DO SO NOT WANT TO GO TO THE HOSPITAL I have another appointment tomorrow and will get an infusion of Pentamidine to prevent pneumonia. Sometimes I have forgotten how vulnerable I am because I have done so well. This is a reality check and with flu season coming I have had to renew my diligence to caution and not become careless. In Sept. I will have the 6 month post transplant tests and should reveal how the transplant is functioning and being able to produce the cells to fight infections and all the assaults to which we are all subject. You have an immune system, mine is still compromised and getting stronger. To have handled this seems to indicate it is getting stronger. I guess since the temps have gone down I am starting to exhale and celebrating Isaac's assessment that it is all working like it was planned. The bad news - I am sick. The good news - I'm handling it so far.
It started about 10 days ago, a little sniffle, a slight runny nose, nothing more, no elevated temps, probably allergies, take some Claritin. It didn't help and persisted for 4 to 5 days and I had an appointment so they ran all the tests and put me on Tamaflu and Levaquin and see you in a week. After that I had some reactions to the Levaquin and got that settled. Then I began to have some temperature rises. The last thing Dr. Khouri said to me in the office was, "If you get a temp. Go to the ER"! For me that is 100.5. I am still immune suppressed and it is always a question of "How much can I handle?" For the last 6 days I have been taking my temp frequently, watching it go up and down. I has been at 100 on at least 2 occasions. Yesterday it was 98.7, last night 99 and this morning back to 98.6. Isaac has been listening to the lungs and they have stayed clear. Pneumonia is one of my biggest threats. Isaac put it into perspective. "Any other time you would have been in the hospital and this is a big step that you have held your own." I DO SO NOT WANT TO GO TO THE HOSPITAL I have another appointment tomorrow and will get an infusion of Pentamidine to prevent pneumonia. Sometimes I have forgotten how vulnerable I am because I have done so well. This is a reality check and with flu season coming I have had to renew my diligence to caution and not become careless. In Sept. I will have the 6 month post transplant tests and should reveal how the transplant is functioning and being able to produce the cells to fight infections and all the assaults to which we are all subject. You have an immune system, mine is still compromised and getting stronger. To have handled this seems to indicate it is getting stronger. I guess since the temps have gone down I am starting to exhale and celebrating Isaac's assessment that it is all working like it was planned. The bad news - I am sick. The good news - I'm handling it so far.
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