Wednesday update

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.

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.

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.

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.

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.

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.

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.

Sept. 14 Dr. Bhansali - Ear specialist

Doctor Bhansali said that Mom's ears are functioning as they were designed - no physical anomolies in her vestibule which would cause imbalance. Three things go into balance, sight, ears, and feeling. Two of these are compromised. Mom's eyes and her feeling (neuropathy and reduced reflexes in her legs and feet). This contributes to her lack of balance.

As for her dizziness, Dr. BH said that it could be that the atrophy of her cerebral/cerebellar area could contribute to the dizziness and loss of balance and perhaps the high white blood cell count.

He has written a prescription for Mom to go to a physical therapist for an assessment. We will do that after we do the blood doctor tomorrow and the eye doctor on Thursday. If the PT exercises we already have from the first physical therapist are good we should continue them. If the PT recommends medication of some sort or other PT, he will write it the prescrition for us.

Mom has also lost her high end hearing - not completely but it could be improved with hearing-aids. She does not want them although she says her friend Gertrude should also have HA's. So who knows. We should make an appointment to follow up with Dr. Bhansali in one year. The exception is if Mom feels the room spinning and extraordinary dizziness we should call immediately and see him as he likes to see a patient as close to an episode as possible.

Sept 11 follow-up remarks

So I looked up dizziness in the elderly and this article from the Merk manual ( http://www.merck.com/mkgr/mmg/sec2/ch19/ch19a.jsp) describes everything we have been through up to and including the physical therapy. Mom does not have vestibular problems (ie. ear)... we just finished all of those tests. She doesn't appear to have circulatory problems, at least not in her carotids. We do know that she has some cerebral and cerebellar atrophy which could be a contributing factor but who knows. I must remember to ask the ENT. Her eyes are fine except for the macular degeneration. The physical therapy discussed at the end of the paper is just exactly what we did for 6 weeks and I think we should resume at home because it says that in weeks or months it could help the situation. I have all the exercises listed on a sheet of paper - one from the PT and one that I wrote as notations when we did PT. So, my plan now is to start doing the ambulator part of the PT. Mom does the eye and head motion exercises.

Sept. 10 -ENT test

Mom had a complete ENT test for dizziness/balance. This included air in her ears, twisting of the head, pulling her head up from a prone position, following a moving light, hearing sounds and wearing electrodes that measured how her eyes were functioning. The end result was that she has all her faculties and that for her age she is in great shape. That was what the audiologist said who ran these tests. We have a meeting with the ENT specialist on Tuesday and he has all the reports from all the other tests that we have undertaken over the last month.

Sept. 7 - eye test results

We went to the Atlanta Eye Clinic and saw Dr. Thrushwell. He diagnosed Mom with dry macular degeneration in the right eye and wet macular degeneration in the left eye. Also, there is a "blister" at the back of Mom's left eye that has fluid and blood in it. We now have an appointment (Sept 16) with Dr. K at the Kennestone Hospital location of the Atlanta Eye Clinic. He is a surgeon who specializes in such things. A question to ask is whether this could be causing Mom's elevated blood count when we see the hematologist on Wed. Sept. 15.

Sept. 2 - Dr. Bhansali

We met with Dr. Bhansali today and he was very thorough with his questions and assessments. After gettng a medical run-down he put some "glasses" on Mom and looked through them into her eyes. Then, he had her close her eyes and he twisted her head back and forth about a dozen times and then he peered back into Mom's eyes to see what was happening. His initial assessment is that the problem is on the left side not the right side. He also had his audiologist assess Mom's hearing. She has some hearing loss, particularly of the high tones but nothing to be concerned with at this time. He also looked into her ears and her mouth.

He has asked that we get the CT Scan results to him and the other ENT test results to him. On Sept. 10th he is going to re-run the ENT tests that Mom had previously to see what his assessment is. He wants to know if Mom has had an MRI in the last three years and I will call Cantwell tomorrow and see if she's had such a thing. I know for certain that she hasn't had one since she had the pacemaker... can't do MRI's with pacemakers. So, if she did have one it would have had to be in 2007 or early 2008. Anyhow, if she's had an MRI then he wants to see that as well.

Mom and I are going to postpone the Boniva shot until the week following the hematologist appt. We can cancel it if necessary but as I said earlier....better not to impede anything the H man needs with an added dose of something.

BTW Mom's INR for coumadin has gone back down to 2.8. For the past two weeks it has been at 3.1 which is a bit thin although nothing to be alarmed about. I'm glad it is back between 2 and 3 which is where it is supposed to be.

Sept. 1 - blood results

Went to see Dr. Cantwell on or about August 25 regarding the call from Dr. Waldrop and Mom's elevated blood count. Dr. Cantwell wanted to run all the tests again to check out Mom. He ran more Blood tests, took an X-ray and did her urine. Today, we had a call regarding the results.

Sharon, Dr. Cantwell's nurse called to say that Mom's white blood count was still elevated but not quite as high as previously. It was at 16 something with some cells that need further identification. That being the case Sharon had their office set an appointment with a hematologist, Dr. McClune, for Sept. 15...couldn't be sooner for a new patient.

I contacted Mark Cohen for a referal on an ENT at the recommendation of Dr. Waldrop and reiterated by Dr. Cantwell. I also asked if he knew a hematologist in case we didn't like the one provided by Wellstar (Cantwell's system). He gave me the name of his own ENT, Dr. Sanjay Bhansali, over near St. Joseph Hosp. He said that a 2 week wait for a new patient was what to expect no matter who the hematologist was so we are going along with Dr. McCune for the moment.

I got an appointment with Dr. Bhansali on Sept. 2, and re-organized Mom's eye appointment for next Tuesday along with her blood work for the Boniva shot. I am thinking that the blood work just received from Dr. Cantwell should work just fine for Dr. Meyerson. I'll check on that tomorrow. Boniva is scheduled for Sept. 15 so I need to see if it conflicts with Dr. McClune. Actually, I think I will reschedule the Boniva...until we've met with Dr. McCune..

August 26, 2010 - Blood results

Dr. Waldrop's office called to say that Mom's sodium is low. There were some other figures she gave me but she had already sent them over to Ryan Cantwell as well as called him. Most concerning is her white count which is elevated to 17.2. The upper normal is 10. So I have already called Cantwell to find out what to do next. They could simply call in a prescription for an antibiotic or they could make an appointment. All the other doctor reports from this week and the previous week will be in Cantwell's office by Tuesday latest. Tuesday we are meeting with Waldrop (neurologist) to get a summary of Mom's head and carotids.

Aug. 24 - no breast cancer

We had the fancy mammogram on Mom's left breast today and Mom does not have breast cancer. She has small benign calcium formations.

August 23rd, 2010 - CT Scan etc.

Today we went to have Mom's head CT scanned, an ultra-sound of carotids and an electro-something on her ears to determine the cause of her "light-headedness". We won't know the outcomes of the CT or the ultra until next Tuesday. The audiologist, who did the electro thing said that Mom has a problem with her right ear. It could be viral or it could be having to do with her circulation....we should know next Tues. I hope when we visit with Dr. Waldrop the neurologist.

August 7th, 2010

Mom said her head feels "other wordly" and thinks an appointment with the brain doctor would be a good idea. I'll call Dr. Waldrop on Monday (he's the neurologist) and make an appointment for diagnosis.

July 24 - Face swollen again - Droopy returns

Mom's face swelled up again like Droopy. She had gone to lunch with the Sunday School group and had eggs benedict. I called the place to find out what was in the eggs and there was nothing with MSG or out of the ordinary. She had birdseye veg/pasta combo for dinner, I checked the contents of that but there was nothing that sounded MSGish or otherwise. So this is the third iteration. The first we thought was dental, the second we though was chinese food, and now this. She always swells up the same way. Lower face and lips.

Mom's balance issues

This page http://www.americangeriatrics.org/education/forum/falling.shtml does a wonderful job describing Mom's balance issues.

In part, her med's cause the dizziness in addition to the fact that her blood pressure drops when she stands up (I measured this repeatedly last week with Mom walking around, standing up, sitting down etc.) and the Physical therapist said that it can be offset by increasing her fluid intake).

Also, Mom has lost some of her physical strength and this is probably because she isn't doing her weight bearing exercises as regularly as she used to.

Also, Mom's eye's do not adjust quickly to changes in motion like turning your head, lifting your head etc. ( a function of age) which is why we do the eye exercises.. I would compare that to spinning around, stopping and wondering why the room still spins.

The good news is that most of this is treatable which is why we have spent the last 6 weeks in therapy. Mom has responded well and has improved but needs to keep up the good work and practice what she has been taught. It would be helpful if she would add some strength building exercises to her regimine so that her legs would hold her up. Too, bicycling or treadmilling would be great for increasing her stamina. And then there is the issue of fluids... Mom needs to drink more during the day to keep her blood pressure from dropping when she stands up and moves.

I'll copy this onto the blog for long term keeping. If more comes up on Thursday, which could be our last day in PT, I'll let you know.

Visit to Neurologist for nerve conductivity

We visited Dr. Waldrop today and had Mom's feet/leg nerves tested and her left hand. The outcome is that she has severe polyneuropathy. ( I failed to ask what "poly" meant but I'm guessing it includes her hands -- I'll check on that tomorrow).

Given that the neuropathy progressed very slowly he says that it is most probably genetic in origin. I asked him about us and he said we could end up having it as well.

To rule out other causal factors, he tested Mom for diabetes and heavy metals which are also causes of neuropathy. Mom's tests came out good. He also checked her B12 levels and they too are good. So, in his mind, this confirms his diagnosis of genetic polyneuropathy.

His recommendation was for Mom to take a B complex vitamin daily as it should make her more comfortable and possibly slow further progress. As for us, he recommends adding B complex to our daily regime as well as it could delay neuropathy in us.

Long and short of it, this is a contributing factor to Mom's balance problems in addition to her eyes. Physical therapy should help and we are seeing him in 6 weeks, at which point the therapy is finished and we can see how much progress has been made.

Neurology doctor

Today we went to see Dr. Waldrop at Kennesaw Neurological associates. Mom wanted to see if she had positional vertigo per a guess from Dr. Cantwell. Dr. Waldrop reviewed Mom's CT scan and ran through several balance tests; tested Mom's senses and her reflexes. She has no feeling in her feet and no reflex in her feet. She has cerebral atrophy - most probably a result of the stroke and that affects balance. More than likely she is suffering from multi-functional balance issues which is consistant with a person her age. The semi-circular canals start to deteriorate, vision becomes challenged (Mom cannot shift from indoor light to outdoor light with easy anymore), and balance is challenged. Given the brains neuroplastic quality, he is sending her to physical therapy which should help and on March 10, he is going to run some electro???? tests to see if her nerves are sending impulses. Today she had blood drawn and is doing a 24 hour urine test to see if there are any underlying problems that are contributing to her situation. Otherwise, he thinks she is in great shape for her age.