Month: September 2018

MS medicine and the Grip

I don’t know how much better or worse my really bad cold would be with or without my Multiple Sclerosis medicine – Gilenya. It has helped me in many ways. (A subject for another post.). It does affect the immune system, but I doubt that it affects colds one way or the other.  An allergist once tried to explain the different ways Gilenya works on the immune system, and I wish I understood it better.  I think scientists are still trying to figure out how it does what it does.  The FDA looks to whether the drug is safe and effective with less emphasis on how it got there.

Coughing and more

Anyway, the grip (a bad cold) is no fun.  It has caused a coughing spree which has made it very difficult to do much of anything.  I’m writing this post to help people through this and because I suppose that misery loves company.  The cold does get better after a few days, but does not go away.  It seems to just linger on for awhile.  It spreads its misery throughout my system as it travels from my chest to my head to my nose to my ears.

Weakness

This weakens me, and simple things become much more difficult. Simple things like eating and taking my medicine, become a chore.

Other health issues

It would be bad enough if I just had the grip, but I am recovering from the baclofen pump operation, and oral surgery.  Frankly, I usually have great motivation and I still do, otherwise I would probably not be writing this post.  This is just one more annoying thing to deal with in life.

I will survive

I am determined to make it though all of this, as well as MS fatigue (which will be a topic for another post), and so can you.

So will you

If you are unlucky enough to also have the grip, we can make it though this together.  I’ve been taking a little Tylenol to make it through the rough spots.

Be determined, and we will survive this cold.

Surgery

I recently had surgery changing the pump – when they change the battery, they change the pump, too.  I have the standard (40 ml) Medtronic Sychromed II pump installed in me.  It’s a little like being the bionic man.

An oil change for the pump

Typically, the pump is refilled with new medicine every three or for months.  It’s more like an oil change.  The bad (old) medicine is taken out and good (new) medicine is put in the pump.

I have a service that comes to my home and will change the medicine while I am in bed.

Surgeon’s office says new medicine

The service called me on Saturday to tell me that they would come on Monday for the pump refill.  I said that I was told at the surgeon’s office that when the surgeon changed the battery and pump, they put in new medicine.  Accordingly, on Monday someone would come, but only to check out the pump.  This is called interrogating the pump.  Thereafter, I realized that Monday would not be good for me.  I spent all weekend trying to get in touch with them to change th day to Tuesday, to no avail.

The nurse and the medicine plan to arrive

Monday came and the nurse who would change the medicine called to tell me new medication would arrive at the house and so would he.  Still trying to change the day, I explained that the surgeon’s office had told me that new medicine was put into the pump when the surgery was performed and the medicine had not arrived at the house.  He assured me that the medicine would arrive shortly and so would he.

The nurse calls the surgeon’s office and is told of the new medicine

Apparently, the medicine and he arrived in the afternoon, negating my reason to change the day to Tuesday.  When he arrived, I again told him that I was told at the surgeon’s office when I had the staples removed, that new medicine was put in the pump at the time of the surgery.  He decided to call the surgeon’s office.  He was told that new medicine was put in the pump at the time of the surgery.  He came back to the pump, interrogated the pump, and he noticed that I had a fair amount of medicine in the pump.

The nurse calls the surgeon’s office a second time and is told they are uncertain about the medicine

He again called the surgeon’s office, but this time they were uncertain whether new medicine was put in the pump at the time of the surgery.  He said that they usually put in new medicine, but might not have because I was getting such a low dose that the medicine was diluted, and they may not have had diluted Medicine  available at the time of surgery.

The nurse decides to change the medicine

In view of this uncertainty, he decided to change the medicine in the pump.  Usually, this does not hurt.  The pump has no port.  A needle is inserted into the middle of the pump.  The area of insertion is found by feeling for the depression in the pump, and with the help of a template that shows the area of insertion.  This time the needle hurt.   This was so probably, because the whole area was sensitive as a result of the recent surgery.  Anyway, he took the possibly old medicine out and put in new medicine.  I was relived when the procedure was concluded.

Bandage

Usually, no bandage was used, but this time a small bandage was used.  I removed the bandage two days later.

The appointment

I made an appointment with the oral surgeon.  I confirmed that they take my insurance, which they do.  I made sure that the driver would be available.  The night before the day of the appointment, the driver calls to say that he cannot make it.  He has no explanation.  This one of life’s problems when you are a paraplegic with multiple sclerosis.  You rely on other people and sometimes they come through for you, and sometimes they don’t.  Fortunately, I was able to get another driver.

The day of the appointment

The driver finally shows up but he is late.  There is traffic on the expressway, and we arrive late.  I give the receptionist, the x-rays which are on my smartphone, and I email the x-rays to the receptionist.  Apparently, I don’t fit in the oral surgeon’s x-ray machine in my power wheelchair.

Seeing the Oral Surgeon

I waited an hour and finally the oral surgeon sees me.  I explain that I am there for one extraction.  He explained that someday the other two would need to be extracted because they really cannot be saved.  I was considering anaethesia, but since this was not my regular driver, and he no idea how the van door and ramp work, and no idea how to get home, I decided to have an injection.   The oral surgeon gave me two injections.  He said that the tooth was being held together by a cap that was over the tooth.  The tooth came out in pieces.  He said this was a difficult extraction, because the bone underneath was strong but the tooth was cracked in pieces.  It was being held together by the cap and in place by the strong bone.  I left the office with instructions to bite down for at least 20 minutes.

Leaving the Oral Surgeon

Of course, I had to ask the driver for the key, so that the door would open and the ramp come out, which it did flawlessly.  This is particularly difficult to say when you must bite down for 20 minutes.  Then I directed him on the way home.  We stopped off at Autospa which finally had the dip stick in stock.  The big job was getting the old broken dip stick out of the van.  This was finally accomplished, at no cost to me since an Autospa employee broke the dip stick while doing an oil change.

Arriving Home

We left Autospa and went home.  Now I had to continue recovering from the pump (battery) replacement surgery, and the oral surgery.

Finding a dentist

I did not want to pay $5,000 to the dentist that saw me at home.  I have dental insurance and I knew I could get dental work done for a lot less.  I called my old dentists who I had seen 3 years ago, and to my surprise, they were willing to work on me while I was in the wheelchair.  I made an appointment and on the day of the appointment, I was off to see the dentist.

Getting into the van

I was dressed and I was patient lifted into the wheelchair.  I took the wheelchair to the van.  As sometimes happens the van door which is supposed to open electronically by remote control did not open.   I had my driver manually open and close the door and then the van door electronically opened.  The old used van has a finicky electronic door and ramp, but with a little work, it functions.

Dentist Office

I got to the dentist office and had the usual one hour wait. Then they took me.  I provided them with the x-rays that the dentist that came to my house provided.  Therefore, I did not need new x-rays.  I had a cleaning, and after the cleaning, I heard the dental hygienist complaining to one of the dentists how hard it was to work on a patient in a wheelchair.  The dentist told the hygienist this is part of dentistry.

Seeing the Dentist

The dentist looked at the x-rays and looked in my mouth, and told me that I had three broken teeth that needed to be extracted.  Then he left to see another patient.  An assistant came into the room to say that I’m all done for today.  I said I wanted to see the dentist again.  I waited for the dentist to return.  When he finally returned, he said the teeth would have to be extracted by an oral surgeon.  I asked why he could not do the extraction?  After all, he had performed extractions on me in the past.   He said that although they had done extractions in the past, my bone was strong but the teeth were cracked and these teeth would come out in pieces, so it was best to have an oral surgeon do the extraction.  I advised him that I was not in pain and I wanted to keep as many teeth as possible.  He then said that one really needed to come out and that the other two could be done later.

Check out

I went to the front desk and made another appointment.  Since I have insurance and these dentists are on my plan, there was no co-payment and no charge.  Of course, upkeep of the van and the driver cost, but the dentist is free.

The trip home

This time the van door and ramp worked, and I was on my way home.  We stopped off for some gas and we stopped off at AutoSpa to see whether they received the new dip stick.  They hadn’t and we continued home.

Doctor Recommended

I have a general practice doctor that comes to the house.  I have not seen a dentist in three years.  It was really time to see a dentist.  The doctor recommended a dentist who could come to the house.   I called the dentist and he came to the house.

Dental X-rays

The dentist began by taking x-rays of my teeth while I was in bed.  He looked in my mouth and saw that I needed two new crowns.  He said that this would cost $5,000.  I told him that I have dental insurance.  He told me that he does not take that insurance and that he was very sorry for people who had that insurance company.  He apparently did not think highly of that insurance company.

He left my house while reminding me that I would need the new crowns. We talked a little about Star Trek.  We parted amicably.

Oil Change

I own a handicap van.  It is not a new van.  It is on old used handicap van.  It is a 2006 Chrysler Town & Country.  Of course, it cost much less than a new van.  However, an old used van is going to have many more problems than a new van.  It will cost a lot of money to fix an old used van, but then I knew this when I bought it.

I took it to an AutoSpa for an oil change and air conditioning service.  I finally realized that it needed help with the air conditioning when (a) the air conditioning did not work and (b) I hear this really bad grinding sound from time to time.  It was still summertime, but it was the end of summer.  I don’t use the van as much as I had expected originally.  At first, I drove the van, but now I let another driver handle the driving for me.

It was time for an oil change and Autospa is usually empty, or almost empty, and can do a 10 minute oil change.  There are probably less expensive places for an oil change but most places take much longer to do an oil change, not because the are slow at doing oil changes, but because they are so busy that there is a long line.   Of course, the driver costs money and that is a factor too.

While doing the oil change, an Autospa employee broke the dipstick, and Autospa agreed to provide me with a new dipstick at no cost, which they later did.  I put in regular oil since the van is not used much anyway.

Air Conditioning Service

Then came air conditioning service which did not go well.  I was told that they could not do air conditioning service, because the compressor was broken.  I was directed to take the van to two different places.  The first place was closed.  The second place was way too busy to do the job, but that place directed me to a third place that could do the job.

MS Patients Need Air Conditioning

At the third place, I was told that I needed a new compressor and an air filter, and that it would cost $900.  Frankly, I have MS, and I really did not have much of a choice.  Many people with MS can not tolerate the heat.  We lose function.  We can hardly move in the heat.  It is not a matter of leaving the car window open, because the hot air blowing does not help much.  For someone with MS, air conditioning is not a luxury, it is a medical necessity.

Waiting for Air Conditioning

It took about three hours to get the parts and install the new parts.  They also put in new freon.  I waited for the repair.  Finally, the air conditioning was working and I felt much better in the van.  We went home.

Who will remove the staples?

I am home with 12 staples in me holding the surgical site in place.  I can have a nurse come to my house to remove the staples or I can go to the surgeon’s office to remove the staples.  I decide to have the staples removed by the surgeon so he can see how the surgery went.  I make an appointment with the surgeon only to confirm the appointment, to find that the surgeon has decided to schedule a surgery at the same time as my follow up visit.

If not the doctor, then maybe his nurse

I suppose the surgeon makes more money from surgeries than he does from follow up visits.  I tried to reschedule the appointment for the next week, but the doctor was off that week.  However, his nurse could see me.

The surgeon’s nurse removes the staples

I had the nurse remove the staples.  It was 12 days after the operation.  Generally, the staples were removed 12 to 14 days after my operations.  She said the staples were about to come out themselves.  That is how ready I was to have the staples removed.  Although there were a dozen staples, it was essentially painless to have the staples removed. There were no further follow up visits with the surgeon.

I have been recovering from the surgery and so I have not been able to update the blog.  In the interim, I have added a recommended product and services page.  I would very much appreciate it if you took a look at the new page.

The trip to the hospital

The day before the operation I received a call from th hospital and I was told that I would be the first person to be scheduled for surgery with my surgeon.  I would need to get to the hospital by 6 am.  I am generally an early riser, but not that early.  I would need to get up about 4:30 am in order to arrive at the hospital by 6 am.  I did this.  I had my aide dress me, put me in the patient lift, and put me into the wheelchair.  I own the wheelchair.  I do not have a wheelchair rental.  The van has a wheelchair ramp.  The wheelchair ramp comes out electronically when I double press a button on the key.  It is remote controlled.  Into the van I went and we went to the hospital.  I needed ID which I had.  The hospital already had the insurance information.  I waited in the emergency room and since I was the first surgery, I did not have to wait long.

Surgery

I was transferred from the wheelchair to a hospital bed and dressed for surgery.  I saw my surgeon, anesthesiologist, and the rest of the surgical team.   Shortly thereafter I was brought to the operating room, I was slide over to where the surgery would be performed.  The mask was put on my face and I was out almost immediately.  The next thing I remember was the mask coming off me.  I was told that the operation was over and I felt as though I could go right home.  However, they took me to recovery, and I would have to wait to be picked up.  This took hours – probably longer than the operation.  I had a tuna fish sandwich for lunch.  I have to admit I had no pain from the operation.  I had 12 stapes in me, which I counted after I went home.

Lack of pain, and the trip home

Although I had no pain, they gave me a prescription for oxy contone.  The prescription was filled, but I never took the medicine.  In fact, I did not even take Tylenol.  I had no pain throughout the recovery.  The medicine was discarded.  The operation was performed as an outpatient.  I was put in my street clothes and transferred to the wheelchair.  The transfer was performed by only one person.  Usually, it takes three people to transfer me.  I left the hospital and went into the van for the ride home.

Home

When I got home it was the usual routine of being transferred to the bed.  I was happy to be home and eating regular food.  The evening before the operation I was not allowed to eat at all.