Eye Doctor Visit

It has been almost one year since I last posted anything.  This is mostly because my life is now one of a person who is bed bound.  So one day is almost identically like the previous.  In fact most of my doctor appointments have been almost identical.  So rather then bore you with posting after posting that basically say the same thing I have decided to not post until I have what I consider major news about how my disease is progressing.  My eye sight has gotten so bad, that I often have to increase the font on my computer in order to read what is printed.  Sometimes I have to use a magnifying glass to read what is on the computer.  I now see double with one image above the original image.

Yesterday July 11 I had an appointment with my Neuro-Ophthalmologist.  Here is what my wife P. wrote to our family and to my siblings.

Let's see if I can summarize what happened.  The girl who does the initial exam kept trying to get results that may sense to her and finally we had to put him in the normal exam chair so she could use the usual machines which still gave her similar results.  Basically, it said that his prescription had hardly changed but he was seeing at 20/80 in spite of seeing 20/30 with the same prescription in January.  Also he was having double vision even when seeing with only one eye.

When Dr. M. came in he said that normally you should only have double vision with 2 eyes and that the prism should have fixed that so that since he now has double vision whether he is using one eye or two he needs to look for a different cause.  He has small cataracts and has had them for some time.  He thought perhaps they had grown but they had not so that was not the answer to why he is experiencing such difficulty seeing.  He has a severe astigmatism which makes correcting his vision difficult.  He doesn't want to do cataract surgery yet because of his health and he isn't sure it would solve the problem.  The cheaper way would be to change his prescription in one of his pairs of glasses and see if that corrected things before we proceeded to change all three sets of glasses.  We discussed that fact that we had to change neurologists and pulmonologists and I asked if the increase in his Lyrica RX could play any part in these changes.

It seems Lyrica can cause blurred vision and since his Rx was increased greatly in late March (from 375 mg. to 700 mg. a day and then lowered to 600 mg. in late June, it is possible that is what is causing the vision issues.  In the end, since we are changing neurologists, he suggested that we don't do anything until either 1. He adjusts to the change of Rx strength or 2. The new neurologist perhaps changes prescription regimen.  We go back to see him in October.

So nothing has changed and we continue to wait.  I like that he is conservative in his approach. He tries not to have us spend money needlessly (like paying for glasses that probably won't solve the problem.)  He did say that he would consider the cataract surgery but would prefer to wait until they were worse.  However, if he thought that it might solve the issues Phil is having, he would do it.  "I'm up for the challenge" were his words.

P.

Birthday Weekend

I wrote this as my morning email that I send to the both the entire I. & G. M. immediate and extended family.  Instead of trying to write a new posting I think the morning email says what I what to say.  The birthday breakfast was not on my birthday but was on the Sunday before my birthday which worked best for my family.

Grandson L. and his two Grandma's drove up at noon on Friday.  After lunch and after L.'s Grandma F. drove on to her home and after L. talked to his mother telling her all about the highlights of his vacation with the grandma's in Indianapolis L. told me that he was a little bored.  So I had him get the oxygen tank which we filled.  Then we put Tippy's walking collar on him and off the three of us went for a walk around the block.  I think this is the first time in 2 years that I’ve been on a walk around the block.  Boy oh boy was I exhausted after that walk.  Then later after supper L.'s parents showed up, boy oh boy was L glad to see his parents.  I think vacationing with Grandmothers is fun, but like any vacation it is always good to return home, even if home/parents come to you, especially for an 8 year old.

On Saturday L. helped his father set up the smoker and he and his dad put the ham on to smoke.  Then L. and his mother ran errands with his Grandmother.  I don't remember much more then that about Saturday.  I think I was still trying to recover from my walk.

Sunday morning the entire family came and the boys made a birthday breakfast for me.  It was a Great, Good, Fantastic and Tasty breakfast.  My Son In-Law K. made a great sausage gravy with some wonderfully seasoned sausage he picked up at his favorite butcher store.  Son C. made the buttermilk biscuits for the gravy.  Son J. made a fantastic fruit salad using melons son K. got at the farmers market he is at on Saturdays.  Niece A. made a great tomato, basil, mozzarella cheese salad using some of son K.’s home grown tomatoes and basil.  J. set the tables while son K. scrambled duck and chicken eggs.  I think this was the first time I've had duck eggs and I couldn't taste any difference.  I thought there might be a difference but if there is I couldn't find it.

Then right after breakfast the ladies went into the city to go on a Chocolate tasting tour.  The boys stayed home and cleaned up the kitchen and dining room.  Everyone headed home between 1:30 and 2:00 PM.  My Niece A. who stayed with us for 6 weeks this summer giving the lunch ladies a vacation from having to come mid day to help me also headed home.  She rode to Wisconsin with son K. and her father drove down from their home in Wisconsin to pick her up.  I really enjoyed the time my niece and I spent together this summer. 

After everyone left, I and Tippy waited, taking naps, until P. came home. What a Great Way to celebrate a birthday, having your entire family around you.

All Those Tomatoes

When I read Britt-Arnhild's House in the Woods, one of the Blogs I follow, this morning I enjoyed reading about her tomatoes.  Reading about her tomatoes started me thinking about the tomatoes in my past. 

I don’t remember if my Father had a garden when we lived in North Carolina.  I do remember Dad having a garden when we moved from North Carolina to Allison Iowa.  I even have living proof about that garden because I still carry a scar on my finger which I managed to cut when cutting asparagus.  I am certain that Dad had tomatoes in that garden but I don’t remember having anything to do with tomatoes.

However I do remember Dad having tomatoes in the garden he had in the Luctor Christian Reformed Church large back yard.  Boy oh boy did Dad grow tomatoes and just about this time of the year August those of us who were old enough to help harvest would be put to work.  There we would be picking and picking those red ripe tomatoes filling baskets and baskets of the red fruit. 

While we would be outside sweating in the garden picking those tomatoes, our Mother would be in the kitchen filling large pots with water and putting it on the stove to bring to a boil.  Mom would use the boiling water to sterilize what seemed to be a room full of 1 quart canning jars.  Once Mom had sterilized the room full of canning jars, she would again fill the pots placing them on the stove and bringing to a boil. 

When the pots were busy boiling away filling the already hot kitchen with more steam and heat we would lug the baskets of ripe tomatoes into the kitchen.  There the older kids would place the tomatoes the boiling water for a short period of time until the skin would split.  Once that happened Mom would remove all the tomatoes in that pot and once it was back up to a boil would fill it with more tomatoes.  While waiting for the water to come to a boil and the tomatoes beginning to split their skins, we would move on to cutting the tomatoes into quarters and filling the quart jars making them ready for the canner.  There are a couple of things I remember not liking about canning those tomatoes is that when finished, your cuticles would be all red.  Also by this time the kitchen would be HOT and filled with steam.

Once we had skinned enough tomatoes that we could get along with one pot of hot water, Mom would put the canner on the stove, I just don’t remember if Mom used a pressure canner or if she used the water bath method of canning those quart jars filled with tomatoes.  After the canner of quart jars was finished, Mom would remove those quart jars from the canner and place on bath towels that covered the table.  Then we would all listen for the “Pop Pop” as those quart jars sealed their lids.

However when January would come and it was cold and snowy outside, all the discomfort of picking and canning those tomatoes would be forgotten when Mom would use some of those tomatoes.

Getting My Hospital Bed Repaired

A number of weeks ago, my Home Health Aide told me that it looked like one side of my bed was lower than the other side.  Sure enough when I studied my bed one side was lower.  However, I wasn’t able to figure out what was causing this.

Then last week I noticed that the head area of my bed was not rising as high as it use to and that the bed was making a lot of creaking noise.  On Sunday June, 16 our daughter and son in-law came over to celebrate Fathers Day, I asked my son in-law to check to see if my bed frame was OK.  After he checked he told me that the bed frame had a huge break in the tubing that went from one side to the other side.  He told me that this tube was connected to the motor which raised and lowered the head of the bed.

The next day I called the company who supplied not only my bed but also my two ventilators and many other expensive pieces of durable medical equipment.  I think the company makes a lot of money from me by either selling or renting me the equipment.  Because of this I didn’t expect any problems getting a repairman out to repair my bed.

When I called the person I talked to told me that someone from their Dispatch would be calling me back either that same or the next day.  When I didn’t receive any phone call I called the company back and spoke to the same person who took my information when I first called.  I was put on hold and after a short wait, the person came back on the line to tell me that “Yes Dispatch had my information on their desk but they were away from their desk at the moment.”  I was assured that I would be receiving a call back from Dispatch.

However when that didn’t happen, I sent the following email to the branch manager.

D,

On Monday 6/17/2013 at 9:00 AM, I called and talked to A about my Hospital bed that I received from you.  I told her that the tubing/bar that is connected to the motor that raises and lowers the front of the bed has a crack that goes almost the entire way around tube.  I asked that someone be sent out to either inspect or repair my bed.  She said that she would forward my information and request to your Dispatch and that they would be calling me.  I have yet to hear from your dispatch.

Because I hadn't heard from you dispatch telling me the status of my request, I called A back on Tuesday 6/18/2013 at 10:45 AM asking if Dispatch would be calling me.  A offered to go and ask your Dispatch and when she came back to the phone she told me that the Dispatch was away from his desk but that all of my information was on his desk.

I've checked on the bed manufacture’s website and my bed frame should be covered by their warranty.  So I don't think this delay can be caused by any request about insurance payment.  Would you look into the status of my request to have my hospital bed repaired? 

I must say that once again I am disappointed by the people who work for you.

Looking forward to hearing from you about the status of my bed repair.

PM

Later the same morning I sent my email to the branch manager, their Dispatch called me back.  He was not a pleasant person to talk to but I didn’t care.  I basically told him that either he sent a repair man with the correct parts or his branch manager would be receiving a second email from me.  So the Dispatcher asked me a number of questions about the nature of my problem and after I explained what I had done to come to the conclusion that the bed frame needed repair he promised to send a repairman out the next morning.

So yesterday morning a van pulled up and I finally have a repaired bed.  It dawned on me that this coming Tuesday the company would be here filling my two oxygen tanks.  I think that the Dispatch wanted to wait on my request and have the person who filled the oxygen tanks examine my bed and then at a later date send a repairman.  It is my feeling that the tubing would have  broken completely through leaving me in a broken bed over the weekend.

Unfortunately this company is the only one in the area who will accept me as their patient.  My wife P. has called around and asked the other Durable Medical Supply companies and non would accept me as a patient.  So I think that I will have to continue to write emails when I am in need of a repair man from this company.

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The Disease Continues

Lately, I have been experiencing increased times of feeling completely exhausted and no matter what I do I fall asleep.  I’ve also have been experiencing some memory loss and I seem to have trouble following explanations.  Often my brothers and I will email each other discussing things we've read or heard, and the other day I had to tell my younger brother that I couldn't follow nor could I understand what he was telling me.  When I told my Neurologist this, she ordered a MRI of the brain.  When that came back normal, she sent me to my Pulmonologist to have some CO2 tests done.

So this past Friday, April 19, after lunch, a friend brought me to the hospital.  I was scheduled to have a 24 to 48 hour test to see if I was retaining CO2.  The test showed that my CO2 level was elevated.  On Saturday Dr. L. made some changes to my ventilator settings which actually seem to make things worse.  Then on Sunday morning Dr. L, tried a number of different changes to the ventilator setting.

Here is what P. sent to our family last night.  I think she has explained what the Doctor determined far better than I ever could.

The tests this weekend showed that I have respiratory acidosis.  Because I do not breath deep enough, my body is retaining CO2 leading to a high blood Ph.  For some reason my kidneys are not compensating for it like they should.  Dr. L. tried decreasing my volume and increasing my breaths per minute (BPM) but I was unable to tolerate that.  She increased the volume again and decreased the BPM to 18 from 20 (I went in at 14).  That still wasn't solving the problem.  She increased the volume again back to 700 but then I was having high pressure and she was afraid his lungs would explode.  I came home at 16 BPM and 700 pressure, a slight increase but it really needs to be adjusted further to bring his CO2 levels in line with where they should be.  She has the results faxed to my doctor and Dr. L.’s partner Dr. S. who may have the company who supplies my ventilator asking them to come to my home.  If they come maybe they will be able to come up with ventilator settings that I can tolerate and which bring my CO2 down.  Sometimes it is a matter of adjusting to the changes.

Respiratory acidosis can be the result of my pain killers as well as not being able to breathe deeply enough to clear out all the Co2.  However in the end the doctor indicated that basically, this may be a progression of my disease and there may not be much they can do about it.

The Restaurant Came Here

Today is my wife P. birthday.  This being one of those special birthday’s I wanted to take her to a nice restaurant.  Only my Spinalcerebellar Ataxia Disease has progressed to the point where I no longer have the strength and/or stamina to go out to a restaurant.  After discussing the idea, I decided to bring the restaurant to us at home.

Next I contacted all of the children asking them to help me make this a wonderful birthday meal for their mother.  Our second son J. agreed that he and his fiancée J. would order the food from the restaurant and pick it up and bring here to the house.  I asked our youngest, our daughter K. to be in charge of things here at the house which she agreed to do for me.  She also went birthday card shopping and bought a wonderful card I could give P my wife.

However, her husband’s great grandmother passed away and the funeral was to be in the early afternoon the Saturday of the birthday meal.  There were some questions that she and her husband would be able to be here in time to do all that needed to be done around here, so I asked out oldest son C. if he would be in charge of the things here at the house.  Now with that part of the meal taken care of all that remained was the menu.

I suggested that our son J. to talk to his mother asking her what food she would like on her birthday meal.  So J. and P. worked on menu suggestions and then I came up with the meal of P.’s choice.  At least I thought that was what I was doing.  My original menu looked like this;

Salad:
1 - Large Maggiano's Salad:  
We need to decide if a small (feeds 8) salad would be enough or if we need a large (feeds 16) salad.

Main meal: (All Small feeds 8):
Chicken & Spinach Manicotti:  
Our Famous Rigatoni "D":         
Chicken Saltimbocca:                 
Two sides:                                    

Dessert:

Tres Leches Cake: Jonathan would make.                

Apple Crostada: From the restaurant

However, when J. saw my menu, he told me that what the restaurant considered serving size and what our family considered a serving size were very different.  He said I was ordering way too much food.  So after talking to him the final menu was:

Salad:
Salad:  J. and his fiancée would make a salad.

Main meal: (All Small feeds 8):
Our Famous Rigatoni "D":         
Chicken Saltimbocca:                 
Asparagus: C. would buy locally and grill on our grill.                                    

Dessert:

Tres Leches Cake: J. would make this.                

Apple Crostada: From the restaurant.

With this smaller menu, the portion sizes were more to the size we would be able to enjoy and not feel like we would have to eat and eat until we all would be uncomfortable.  However, we still have a refrigerator full of left over’s from the restaurant.  So this birthday meal will continue for a couple more days.

The one sad note was that earlier in the week our youngest son told us that both he and his wife were fighting the flu and weren’t certain that they would be able to come for the birthday celebration.  Then on Saturday April 13 our youngest son told us that they both were still fighting the flu and would not be able to come and celebrate with us.  We were sorry they couldn’t come, but understand that they wouldn’t want to infect us with the flu.