Mom is improving slowly. Her voice doesn't sound like a squeek and her nose isn't running so profusely. Karley recommended Mucinex and that has helped the cough so I expect that in the next few days, Mom will feel much better.
Her INR level (Coumadin measurement) has dropped to 1.8 which is too now thick and I have spoken to our contact at the coumadin clinic. She's upp'd the dosage for today and then we are supposed to go back on Mom's standard regimine and check her blood in a week. Fat chance! I will continue to check until things stabilize. Meantime, we did chicken soup and yogurt for lunch...diahrea again from the antibiotics...and then had a regular dinner. Mom's taste is gone for the moment along with her appetite.
Tomorrow we go to the Boniva clinic for Mom's arthritis med's. Never a dull moment.
Wednesday, December 29, 2010
Monday, December 27, 2010
The day after Christmas
We have spent a week with gastro-intestinal upset that was truly upsetting. Mom suffered from Sunday, Dec. 19 ending Friday Dec. 24. The severe diahrea threw her INR (coumadin) rating to the sky raising it to 7.8. I finally called Dr. Cohen who told me to feed her greens and take her off the coumadin until her blood came down to 2.2 or 2.3. That is now in progress. Meanwhile, Mom now has a cold with laryngitis. So, today, Dec. 27, we are off to Dr. Cantwell, hoping to get some remedy that will prevent this from going further.
Wednesday, December 15, 2010
Dr. McCune Dec 15
We went to see Dr. McCune today. He is the haematologist/oncologist. Mom is doing well. Her white blood count was down a bit from the last time. Her red blood count was also down a bit so he wants her to take an iron suppliment twice a week. This is an over the counter remedy. In the meantime, her complete blood workup will be ready by Friday (maybe) and we will get another reading of other things. This information will also be faxed back to Dr. Myerson so Mom can have her Boniva infusion next week.
Re: Boniva. I asked Dr. Myerson the rhumatologist last week whether there was any questionable interaction or adverse impact on CLL from Boniva. He said no, there was not.
I asked Dr. McCune about Karley saving her cord blood for Mom or any one of us should the need arise. He said he had done two years of cord blood work when he was at Duke Univ. and they were nothing but trouble. It did not produce the results desired, it could only be used on little adults and, at that, it took two transfusions. Apparently the stem cells in the cord do not work as well as other stem cells for the purpose of CLL and perhaps other things. Dr. McCune also said that Mom would not be a candidate for this modality anyhow. He also said it was very expensive to save cord blood, about $100/month and that the cells only stayed viable at the outmost for 2 years, hence, he would not recommend saving it for Mom or any of us. Thank you Karley for thinking about this for all of us!
McCune thinks Mom is doing very well for 92.
We are scheduled to go back in April, 2011.
Re: Boniva. I asked Dr. Myerson the rhumatologist last week whether there was any questionable interaction or adverse impact on CLL from Boniva. He said no, there was not.
I asked Dr. McCune about Karley saving her cord blood for Mom or any one of us should the need arise. He said he had done two years of cord blood work when he was at Duke Univ. and they were nothing but trouble. It did not produce the results desired, it could only be used on little adults and, at that, it took two transfusions. Apparently the stem cells in the cord do not work as well as other stem cells for the purpose of CLL and perhaps other things. Dr. McCune also said that Mom would not be a candidate for this modality anyhow. He also said it was very expensive to save cord blood, about $100/month and that the cells only stayed viable at the outmost for 2 years, hence, he would not recommend saving it for Mom or any of us. Thank you Karley for thinking about this for all of us!
McCune thinks Mom is doing very well for 92.
We are scheduled to go back in April, 2011.
Wednesday, September 22, 2010
sept 21 - blood follow-up
Finally Dr. McCune's office called. Mom is deficient in iron and needs to have a multi-vit with iron in it. Otherwise, her thyroid and vitamin B12 levels are just fine.
Thursday, September 16, 2010
More on Mom's eye condition - sept 16
This article from the national institutes of health does an excellent job describing exactly everything we know and experienced at the doctors office today. http://www.nei.nih.gov/health/maculardegen/armd_facts.asp
Mom had the 3 initial tests listed and then had the fluorescein angiogram test which is the one where they took all the pictures of her macula. On the right eye we could see the drusen with one on the edge of the macula - the doctor did not say what stage Mom's right eye is in but I'm guessing, based on this article that it is intermediate AMD.
Left eye: She has a drusen on the macula with the leak and 3 blood spots in her left wet AMD eye. That means she has advanced AMD on that side.
From this article I have the impression that Mom could lose her sight in the left eye at anytime which doesn't mean we shouldn't monitor it. Mom can check her "wiggly lines" every day as we have the eye chart seen in the article on the kitchen pantry door.
We already have the vitamins - the doctor gave her a sample (I took an extra when no one was looking ) and this evening I went and bought a jar of them which I'll give Mom in the morning. These vitamins are from Bauch and Lomb PreserVision for AREDS. She will take two a day.
Lucentis is the drug that was going to be injected in to Mom's eye.
Visudyne therapy was a secondary drug but not as effective that could be used...also injected.
This doctor recommended lucentis and then does lazer as a follow-up for the wet AMD. We told him we would get back to him if Mom changes her mind.
This article from the national institutes of health does an excellent job describing exactly everything we know and experienced at the doctors office today. http://www.nei.nih.gov/health/maculardegen/armd_facts.asp
Mom had the 3 initial tests listed and then had the fluorescein angiogram test which is the one where they took all the pictures of her macula. On the right eye we could see the drusen with one on the edge of the macula - the doctor did not say what stage Mom's right eye is in but I'm guessing, based on this article that it is intermediate AMD.
Left eye: She has a drusen on the macula with the leak and 3 blood spots in her left wet AMD eye. That means she has advanced AMD on that side.
From this article I have the impression that Mom could lose her sight in the left eye at anytime which doesn't mean we shouldn't monitor it. Mom can check her "wiggly lines" every day as we have the eye chart seen in the article on the kitchen pantry door.
We already have the vitamins - the doctor gave her a sample (I took an extra when no one was looking ) and this evening I went and bought a jar of them which I'll give Mom in the morning. These vitamins are from Bauch and Lomb PreserVision for AREDS. She will take two a day.
Lucentis is the drug that was going to be injected in to Mom's eye.
Visudyne therapy was a secondary drug but not as effective that could be used...also injected.
This doctor recommended lucentis and then does lazer as a follow-up for the wet AMD. We told him we would get back to him if Mom changes her mind.This article from the national institutes of health does an excellent job describing exactly everything we know and experienced at the doctors office today. http://www.nei.nih.gov/health/maculardegen/armd_facts.asp
Mom had the 3 initial tests listed and then had the fluorescein angiogram test which is the one where they took all the pictures of her macula. On the right eye we could see the drusen with one on the edge of the macula - the doctor did not say what stage Mom's right eye is in but I'm guessing, based on this article that it is intermediate AMD.
Left eye: She has a drusen on the macula with the leak and 3 blood spots in her left wet AMD eye. That means she has advanced AMD on that side.
From this article I have the impression that Mom could lose her sight in the left eye at anytime which doesn't mean we shouldn't monitor it. Mom can check her "wiggly lines" every day as we have the eye chart seen in the article on the kitchen pantry door.
We already have the vitamins - the doctor gave her a sample (I took an extra when no one was looking ) and this evening I went and bought a jar of them which I'll give Mom in the morning. These vitamins are from Bauch and Lomb PreserVision for AREDS. She will take two a day.
Lucentis is the drug that was going to be injected in to Mom's eye.
Visudyne therapy was a secondary drug but not as effective that could be used...also injected.
This doctor recommended lucentis and then does lazer as a follow-up for the wet AMD. We told him we would get back to him if Mom changes her mind.
This article from the national institutes of health does an excellent job describing exactly everything we know and experienced at the doctors office today. http://www.nei.nih.gov/health/maculardegen/armd_facts.asp
Mom had the 3 initial tests listed and then had the fluorescein angiogram test which is the one where they took all the pictures of her macula. On the right eye we could see the drusen with one on the edge of the macula - the doctor did not say what stage Mom's right eye is in but I'm guessing, based on this article that it is intermediate AMD.
Left eye: She has a drusen on the macula with the leak and 3 blood spots in her left wet AMD eye. That means she has advanced AMD on that side.
From this article I have the impression that Mom could lose her sight in the left eye at anytime which doesn't mean we shouldn't monitor it. Mom can check her "wiggly lines" every day as we have the eye chart seen in the article on the kitchen pantry door.
We already have the vitamins - the doctor gave her a sample (I took an extra when no one was looking ) and this evening I went and bought a jar of them which I'll give Mom in the morning. These vitamins are from Bauch and Lomb PreserVision for AREDS. She will take two a day.
Lucentis is the drug that was going to be injected in to Mom's eye.
Visudyne therapy was a secondary drug but not as effective that could be used...also injected.
This doctor recommended lucentis and then does lazer as a follow-up for the wet AMD. We told him we would get back to him if Mom changes her mind.
Mom had the 3 initial tests listed and then had the fluorescein angiogram test which is the one where they took all the pictures of her macula. On the right eye we could see the drusen with one on the edge of the macula - the doctor did not say what stage Mom's right eye is in but I'm guessing, based on this article that it is intermediate AMD.
Left eye: She has a drusen on the macula with the leak and 3 blood spots in her left wet AMD eye. That means she has advanced AMD on that side.
From this article I have the impression that Mom could lose her sight in the left eye at anytime which doesn't mean we shouldn't monitor it. Mom can check her "wiggly lines" every day as we have the eye chart seen in the article on the kitchen pantry door.
We already have the vitamins - the doctor gave her a sample (I took an extra when no one was looking ) and this evening I went and bought a jar of them which I'll give Mom in the morning. These vitamins are from Bauch and Lomb PreserVision for AREDS. She will take two a day.
Lucentis is the drug that was going to be injected in to Mom's eye.
Visudyne therapy was a secondary drug but not as effective that could be used...also injected.
This doctor recommended lucentis and then does lazer as a follow-up for the wet AMD. We told him we would get back to him if Mom changes her mind.
This article from the national institutes of health does an excellent job describing exactly everything we know and experienced at the doctors office today. http://www.nei.nih.gov/health/maculardegen/armd_facts.asp
Mom had the 3 initial tests listed and then had the fluorescein angiogram test which is the one where they took all the pictures of her macula. On the right eye we could see the drusen with one on the edge of the macula - the doctor did not say what stage Mom's right eye is in but I'm guessing, based on this article that it is intermediate AMD.
Left eye: She has a drusen on the macula with the leak and 3 blood spots in her left wet AMD eye. That means she has advanced AMD on that side.
From this article I have the impression that Mom could lose her sight in the left eye at anytime which doesn't mean we shouldn't monitor it. Mom can check her "wiggly lines" every day as we have the eye chart seen in the article on the kitchen pantry door.
We already have the vitamins - the doctor gave her a sample (I took an extra when no one was looking ) and this evening I went and bought a jar of them which I'll give Mom in the morning. These vitamins are from Bauch and Lomb PreserVision for AREDS. She will take two a day.
Lucentis is the drug that was going to be injected in to Mom's eye.
Visudyne therapy was a secondary drug but not as effective that could be used...also injected.
This doctor recommended lucentis and then does lazer as a follow-up for the wet AMD. We told him we would get back to him if Mom changes her mind.This article from the national institutes of health does an excellent job describing exactly everything we know and experienced at the doctors office today. http://www.nei.nih.gov/health/maculardegen/armd_facts.asp
Mom had the 3 initial tests listed and then had the fluorescein angiogram test which is the one where they took all the pictures of her macula. On the right eye we could see the drusen with one on the edge of the macula - the doctor did not say what stage Mom's right eye is in but I'm guessing, based on this article that it is intermediate AMD.
Left eye: She has a drusen on the macula with the leak and 3 blood spots in her left wet AMD eye. That means she has advanced AMD on that side.
From this article I have the impression that Mom could lose her sight in the left eye at anytime which doesn't mean we shouldn't monitor it. Mom can check her "wiggly lines" every day as we have the eye chart seen in the article on the kitchen pantry door.
We already have the vitamins - the doctor gave her a sample (I took an extra when no one was looking ) and this evening I went and bought a jar of them which I'll give Mom in the morning. These vitamins are from Bauch and Lomb PreserVision for AREDS. She will take two a day.
Lucentis is the drug that was going to be injected in to Mom's eye.
Visudyne therapy was a secondary drug but not as effective that could be used...also injected.
This doctor recommended lucentis and then does lazer as a follow-up for the wet AMD. We told him we would get back to him if Mom changes her mind.
This article from the national institutes of health does an excellent job describing exactly everything we know and experienced at the doctors office today. http://www.nei.nih.gov/health/maculardegen/armd_facts.asp
Mom had the 3 initial tests listed and then had the fluorescein angiogram test which is the one where they took all the pictures of her macula. On the right eye we could see the drusen with one on the edge of the macula - the doctor did not say what stage Mom's right eye is in but I'm guessing, based on this article that it is intermediate AMD.
Left eye: She has a drusen on the macula with the leak and 3 blood spots in her left wet AMD eye. That means she has advanced AMD on that side.
From this article I have the impression that Mom could lose her sight in the left eye at anytime which doesn't mean we shouldn't monitor it. Mom can check her "wiggly lines" every day as we have the eye chart seen in the article on the kitchen pantry door.
We already have the vitamins - the doctor gave her a sample (I took an extra when no one was looking ) and this evening I went and bought a jar of them which I'll give Mom in the morning. These vitamins are from Bauch and Lomb PreserVision for AREDS. She will take two a day.
Lucentis is the drug that was going to be injected in to Mom's eye.
Visudyne therapy was a secondary drug but not as effective that could be used...also injected.
This doctor recommended lucentis and then does lazer as a follow-up for the wet AMD. We told him we would get back to him if Mom changes her mind.
September 16, Dr. Kooragayala - eyes
Mom visited Dr. K today re: her dry and wet macular degeneration. The doctor shows that she has "leaky" type wet AMD (age-related MD). He was going to give her a shot in the eye which in 95% of the cases stops the leak and in 50% of of those 95% improves vision. There are some potential side effects none of which bothered Mom until the word Stroke came up. We were going to have this shot and were prepared but called the doctor back. We asked how often does this stroke thing happen. He said that research on the drug (name will come later) does not bear it out that stroke happens as a result of this medice HOWEVER, given mother's age you can't rule it out. Well, that was enough so Mom and I were going to call a family gathering to discuss the subject. NOT
Mom has made up her mind. Here I paraphrase: She has made it to 92 and didn't think she had an eye problem until she went in to see the eye doctor for new glasses. She prefers blind to stroke and its unpleasant possibilities. Presently her right eye - unbeknownst to her has taken over for the sight limitations of her left eye.
I am going to check up to see if blind means blackness or only light coming in the periphery or what "blind" means. Also, I will check to see if this situation can be monitored every quarter with new photo's of the macula to see how things are going. Also, I will check to see if one goes blind instantly or gradually.
There are two other treatments: another kind of shot which is less effective - the shots go into the eye.... and laser which is used with the shot. Without the shot it isn't as effective or effective at all without the shot.
Mom has made up her mind. Here I paraphrase: She has made it to 92 and didn't think she had an eye problem until she went in to see the eye doctor for new glasses. She prefers blind to stroke and its unpleasant possibilities. Presently her right eye - unbeknownst to her has taken over for the sight limitations of her left eye.
I am going to check up to see if blind means blackness or only light coming in the periphery or what "blind" means. Also, I will check to see if this situation can be monitored every quarter with new photo's of the macula to see how things are going. Also, I will check to see if one goes blind instantly or gradually.
There are two other treatments: another kind of shot which is less effective - the shots go into the eye.... and laser which is used with the shot. Without the shot it isn't as effective or effective at all without the shot.
Wednesday, September 15, 2010
Sept. 15 Dr. McCune - hemotology/oncology
A blood specimen was taken and immediately taken to Dr. McCune's lab where the results were that Mom has CLL - Chronic Leukemia. This is nothing to be disturbed over as it turns out. She has probably had it for at least the past 2 years. I asked why they didn't tell me back when she had the stroke and he said she had multiple things going on so the elevated white cells could have been attributed to that. McCune said that this doesn't cause Mom's fatigue or her dizziness.. apparently it doesn't do anything at all if I understood him correctly. After the blood test he went and looked at the slide that had been prepared of Mom's white cells...they were broken up which is a clear indicator of CLL. The white blood cells are "fragile" with CLL. I asked if it would kill her. He said no. I asked if it was hereditary. He said not. He said if she had enlarged lymph nodes or something more symptomatic he could give her medicine but he said presently there is no need. I asked if this was no-med's was age - related and he said no. "So if she was 30 you still wouldn't prescribe meds". Again he said no.
Finally he asked if anyone had done a thyroid or B12 test yet. I said no. He said this could also be a contributor to fatigue or dizzy. So he drew more blood and we will know tomorrow if everything else is Okay.
Finally he asked if anyone had done a thyroid or B12 test yet. I said no. He said this could also be a contributor to fatigue or dizzy. So he drew more blood and we will know tomorrow if everything else is Okay.
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