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Well, they've finally figured out what is wrong with me and why I am feeling so poorly. I have a virus known as Cytomegalovirus (CMV).
CMV is a common virus that infects most people at some time during their lives but rarely causes obvious illness. It is a member of the herpes virus family, like chickenpox, infectious mononucleosis, fever blisters and genital herpes. Like other herpes viruses, CMV can remain dormant for a while and then reactivate at a later time. It's possible that this little gift came from my donor, but it's also possible that my sleeping CMV simply woke up. Because I have a suppressed immune system I am prone to these types of infections, and believe me, this one hit me hard. CMV is not uncommon among BMT patients and Hopkins protocol calls for regular blood tests to check for it. Although CMV infections are of concern for people like me, CMV pneumonia and CMV in the intestines are particularly worrisome because they can be fatal! EGAD! I am currently on mega doses of an antibiotic called Valcyte that costs a mere $1706.81! Double EGAD! Any drug that costs that much for a weeks worth ought to have me dancing the jig in no time, right? I will however, remain in IPOP another week so that my progress can be closely monitored and so when I'm released to Outpatient Services I'll be fully recovered. I'll be tested again next week for CMV and probably for weeks to come. I am told that the medication is likely to cause my white blood cells to drop so I'm glad they are now over 7,000. I am so relieved and ready to feel better - this has been going on way too long.
Now the really good news - my donor vs patient results are in and I now have 100% donor marrow. That is the best news ever! I am so excited about his you have no idea. Things are really looking up now!
Thursday, July 30, 2009
Monday, July 27, 2009
Day 62 and Still in Clinic
Today is Day 62 and I still haven't been released from IPOP. And, it doesn't look like things are going to change anytime this week either even though my numbers are looking good.
My skin biopsy from last Thursday was inconclusive - my skin rash could be GVH or it could be a drug reaction. A bone marrow doc will visit me in clinic tomorrow to further evaluate as my rash is not only highly visible now, but is spreading over my entire body. As for my innerds, well that's another story. Nausea and diarrhea have become the bane of my existence. After I see the doc tomorrow it will be determined if I need to have an endoscopy done as GVH can also settle in the gut. If the GVH worsens then I'll be treated with steroids, if it doesn't then it's merely a wait and see situation. GVH must be monitored very carefully as it can seriously effect the major organs of the body. While a mild case of GVH will not be treated and is a good and important step in my recovery, monitoring and taking care of myself are the watchwords. Even a mild case of sunburn can be life-threatening to someone with GVH.
I also had a CT Scan of my sinuses and chest on Friday and they are both clear. My bone marrow biopsy and donor vs patient test results are not back yet, and my stool specimen was clear of any bacteria or infection. So everything points to GVH, but it's just too soon to tell with certainty.
This has been a difficult couple of weeks for me. I feel weak and just plain worn out, especially after doing so well through everything else. But, this too shall pass and when it does, watch out!
My skin biopsy from last Thursday was inconclusive - my skin rash could be GVH or it could be a drug reaction. A bone marrow doc will visit me in clinic tomorrow to further evaluate as my rash is not only highly visible now, but is spreading over my entire body. As for my innerds, well that's another story. Nausea and diarrhea have become the bane of my existence. After I see the doc tomorrow it will be determined if I need to have an endoscopy done as GVH can also settle in the gut. If the GVH worsens then I'll be treated with steroids, if it doesn't then it's merely a wait and see situation. GVH must be monitored very carefully as it can seriously effect the major organs of the body. While a mild case of GVH will not be treated and is a good and important step in my recovery, monitoring and taking care of myself are the watchwords. Even a mild case of sunburn can be life-threatening to someone with GVH.
I also had a CT Scan of my sinuses and chest on Friday and they are both clear. My bone marrow biopsy and donor vs patient test results are not back yet, and my stool specimen was clear of any bacteria or infection. So everything points to GVH, but it's just too soon to tell with certainty.
This has been a difficult couple of weeks for me. I feel weak and just plain worn out, especially after doing so well through everything else. But, this too shall pass and when it does, watch out!
Wednesday, July 22, 2009
Release from IPOP Likely to be Delayed
It is very likely that my discharge from IPOP to Outpatient Services will be delayed by a week due to some recent complications.
The good news first. My echo cardiogram from last Friday shows that there is no fluid around my heart. Apparently CT Scans of the Chest are notorious for showing what looks like fluid and Echos, which give a much clearer picture, either confirm or disprove. The coughing that I have seems to be a simple case of post-nasal drip.
Two more things that are contributing to my general feeling of lousiness are Oral Thrush and the beginning of Graft vs Host. Oral thrush produces creamy white lesions on the tongue and inner cheeks and is common among people with compromised immune systems that are on a constant diet of antibiotics. If left untreated it can grow down the esophagus. The lesions can become painful -mine are not. To treat I was given a oral rinse and a "wait and see".
Graft versus Host Disease (GVHD) is a common complication following an allogeneic stem cell transplant. Twenty to 50% of patients undergoing a stem cell transplant with a related donor develop it. It is triggered by cells called T-cells which are a type of white blood cell that can recognize which cells belong in an individual's body and which cells do not. When a donor's T-cells are transplanted into a patient, they perceive the patient's organs and tissues as foreign cells and orchestrate an immune system attack to destroy them. Fortunately, most patients transplanted with stem cells from a related donor experience only a mild or moderate case of GVHD that resolves itself over time with treatment. Although GVHD can be very serious for some, it is too soon to write about all the "what ifs".
My GVHD seems to be in the first acute stages - skin redness, a rash and just generally not feeling well. I am unsure what my long-term treatment will be, but I am scheduled for a skin biopsy tomorrow which will confirm or deny the presence of GVHD.
On Friday, which is Day #59, I will receive a bone marrow biopsy. From the biopsy they will examine the marrow to be sure that everything is as it should be. I will also have a blood test done to determine how much donor and how much patient marrow is in my body. I've been told that in the near future I will have to get another series of Lumbar Punctures and intrathecal chemotherapy treatments in my spine. All normal precautions for the type of leukemia I had. God I'm tired!
The good news first. My echo cardiogram from last Friday shows that there is no fluid around my heart. Apparently CT Scans of the Chest are notorious for showing what looks like fluid and Echos, which give a much clearer picture, either confirm or disprove. The coughing that I have seems to be a simple case of post-nasal drip.
Two more things that are contributing to my general feeling of lousiness are Oral Thrush and the beginning of Graft vs Host. Oral thrush produces creamy white lesions on the tongue and inner cheeks and is common among people with compromised immune systems that are on a constant diet of antibiotics. If left untreated it can grow down the esophagus. The lesions can become painful -mine are not. To treat I was given a oral rinse and a "wait and see".
Graft versus Host Disease (GVHD) is a common complication following an allogeneic stem cell transplant. Twenty to 50% of patients undergoing a stem cell transplant with a related donor develop it. It is triggered by cells called T-cells which are a type of white blood cell that can recognize which cells belong in an individual's body and which cells do not. When a donor's T-cells are transplanted into a patient, they perceive the patient's organs and tissues as foreign cells and orchestrate an immune system attack to destroy them. Fortunately, most patients transplanted with stem cells from a related donor experience only a mild or moderate case of GVHD that resolves itself over time with treatment. Although GVHD can be very serious for some, it is too soon to write about all the "what ifs".
My GVHD seems to be in the first acute stages - skin redness, a rash and just generally not feeling well. I am unsure what my long-term treatment will be, but I am scheduled for a skin biopsy tomorrow which will confirm or deny the presence of GVHD.
On Friday, which is Day #59, I will receive a bone marrow biopsy. From the biopsy they will examine the marrow to be sure that everything is as it should be. I will also have a blood test done to determine how much donor and how much patient marrow is in my body. I've been told that in the near future I will have to get another series of Lumbar Punctures and intrathecal chemotherapy treatments in my spine. All normal precautions for the type of leukemia I had. God I'm tired!
Friday, July 17, 2009
Fluid Around My Heart
As it turns out, I wasn't able to attend my Discharge or GVH Class yesterday as scheduled. I haven't been feeling very well the last few days so after a battery of tests and scans it was found that I have some fluid around my heart. Today I'll get an Echo-cardiogram to determine what the next step(s) will be. It's likely that Gleevec is the culprit since one of it's side effects is congestive heart failure. Congestive Heart Failure (CHF) is when the heart can't pump enough blood to the other organs in the body. As blood flow out of the heart slows, blood returning to the heart through the veins backs up, causing congestion in the tissues. Often swelling (edema) results. Most often there's swelling in the legs and ankles, but it can happen in other parts of the body, too. Sometimes fluid collects in the lungs and interferes with breathing, causing shortness of breath, especially when a person is lying down. Heart failure also affects the kidneys' ability to dispose of sodium and water. The retained water increases the edema. An Echo-cardiogram will determine if any of my heart valves have been damaged and to what extent the fluid is present. Maybe Gleevec isn't so "smart" after all.
Wednesday, July 15, 2009
Day +50 and Counting
Today is day 50 - I can hardly believe it. My counts are fantastic yet I struggle with bouts of nausea and fatigue on a daily basis. I'm told that my body needs time to adjust to being on the Gleevec again - this is my 3rd week and I say enough is enough. My appetite is non-existent a
nd food is my enemy. We are saving a fortune in groceries. Nothing seems to please my palette and I worry constantly about vomiting (which I've done 5 or 6 times in the past 3 weeks). Gosh, I don't remember being this bad in the hospital - well, maybe I was and have chosen to forget. I'm told the nausea and fatigue are the last two things to go away, that I need to practice patience and by November I'll be feeling much better! Huh!!!
My white count is over 6,000 and my ANC number is 3990. Since being released from the hospital I have not had to receive one blood product - I got me some good bone marrow didn't I? Brad continues to feel fine. The blood test that was taken on Day 30 to determine how much donor and how much patient marrow I have indicated that I am 85% donor and 15% patient. That is good news. The test will be taken again on Day 60 with a hope of 100% donor.
I am now on Dapsone (antibiotic) instead of Bactrim because I broke out in an itchy rash (not uncommom). While the itching almost drove me crazy at times, I adapted well to the smell of the medicated anti-itch cream. You can still find me scratching about and I often wonder if my skin will ever return to normal if there is such a thing. Speaking of which, I have quite the chemo tan - I look like I have been spending my days laying in the sun - NOT! I find it quite amazing that all of these things are happening now - almost 2 months after transplant - I wonder what is yet to come. That chemotherapy is potent stuff, that's for sure and takes a while to leave the body.
As of Day 60 (which is July 25th) I will be released from the IPOP Clinic and will visit Outpatient Services instead. I'm not sure what to expect at this point, but I think my visits will be less than 3 days a week. Tomorrow I have to attend a Discharge Class and a GVH (Graft vs Host) Class. I'll write about GVH as I learn more. I do know it has to do with the rejection process and that it can happen around the 3rd month after transplant. Just another hurdle, right?
As you can see by the picture I posted of my 60th birthday I have hair! That is my wig and while I get all sorts of compliments, I prefer to go au natural or wear a scarf. The good news is I do get to go out whenever I feel up to it and there are fewer restrictions. I try to avoid huge crowds though and have become quite the germaphobe, but hey, worse things can happen. Ray and I have been able to spend a lot of time on our boat which I find most relaxing. And this weather - I love it! The cool breezes and the lapping of the water are quite conducive to napping.
nd food is my enemy. We are saving a fortune in groceries. Nothing seems to please my palette and I worry constantly about vomiting (which I've done 5 or 6 times in the past 3 weeks). Gosh, I don't remember being this bad in the hospital - well, maybe I was and have chosen to forget. I'm told the nausea and fatigue are the last two things to go away, that I need to practice patience and by November I'll be feeling much better! Huh!!!My white count is over 6,000 and my ANC number is 3990. Since being released from the hospital I have not had to receive one blood product - I got me some good bone marrow didn't I? Brad continues to feel fine. The blood test that was taken on Day 30 to determine how much donor and how much patient marrow I have indicated that I am 85% donor and 15% patient. That is good news. The test will be taken again on Day 60 with a hope of 100% donor.
I am now on Dapsone (antibiotic) instead of Bactrim because I broke out in an itchy rash (not uncommom). While the itching almost drove me crazy at times, I adapted well to the smell of the medicated anti-itch cream. You can still find me scratching about and I often wonder if my skin will ever return to normal if there is such a thing. Speaking of which, I have quite the chemo tan - I look like I have been spending my days laying in the sun - NOT! I find it quite amazing that all of these things are happening now - almost 2 months after transplant - I wonder what is yet to come. That chemotherapy is potent stuff, that's for sure and takes a while to leave the body.
As of Day 60 (which is July 25th) I will be released from the IPOP Clinic and will visit Outpatient Services instead. I'm not sure what to expect at this point, but I think my visits will be less than 3 days a week. Tomorrow I have to attend a Discharge Class and a GVH (Graft vs Host) Class. I'll write about GVH as I learn more. I do know it has to do with the rejection process and that it can happen around the 3rd month after transplant. Just another hurdle, right?
As you can see by the picture I posted of my 60th birthday I have hair! That is my wig and while I get all sorts of compliments, I prefer to go au natural or wear a scarf. The good news is I do get to go out whenever I feel up to it and there are fewer restrictions. I try to avoid huge crowds though and have become quite the germaphobe, but hey, worse things can happen. Ray and I have been able to spend a lot of time on our boat which I find most relaxing. And this weather - I love it! The cool breezes and the lapping of the water are quite conducive to napping.
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