Friday, January 12, 2018

Bronchoscopy

I had the bronchoscopy Wednesday and it went smoothly.  I was awake but there was about 3 minutes that I can't really remember.  Weird kind of conscious sedation but it works.  It was the few minutes it took to pass the camera through my nose and down my throat that I have no memory of.  I was aware of everything else.  

The doctor showed me what he cleaned out of my lungs but it didn't look shocking or anything like what I cough up.  It was just white in color.  He told us he didn't see anything "scary" like cancer.  He didn't do a biopsy because he didn't see anything to biopsy.  Everything was sent to the pathologist.  Afterward I was told to expect to be coughing a lot and I didn't cough even once.  I felt fine. 

Thursday I didn't cough or wheeze when I got up but by night time I was wheezing pretty bad and coughing.  Today I haven't coughed much or wheezed.  My doctor called me today and said he was ordering another antibiotic.  He said he didn't find anything that would require IV antibiotics.  He found what I thought he said was oily bacteria.... or at least some kind of bacteria.  He is still waiting for additional reports.  I take the antibiotic 7 days and go see him again on the 16th.

So my hopes that they would just identify something and then give me the cure are kind of deflated.  I'm not sure where we go from here.

Saturday, January 6, 2018

Update

I saw the doctor the last Monday after running a fever and having chills on Sunday night.  He just looked puzzled and told me he can't give me anymore oral antibiotics as an outpatient.  He then ordered the bronchoscopy for yesterday but it was canceled because my doctor got sick.  Now it is scheduled for next Wednesday.  He will also be doing a lung washing.  Then it goes to pathology and he won't get the results for two weeks.  In the meantime I'm still running a temp of about 102.  I'm now taking Tylenol every 6 hours just to keep from running a temp.

So that's where I stand with all this.  Tomorrow my daughters are coming over to learn how to prepare Mike's meals.  Just in case I'm not up to it next week.  

Yesterday Ron and I went to a little town just South of us where a new business has opened.  It is called Peaceful Portions.  They are a meal delivery service and specialize in healthy meals.  They even calculate the Weight Watcher Points on all their meals.  When I was reading their website I noticed that they accommodate special diets.  Soooo I went there to see if they could accommodate Mike's dietary needs and they said YES!  They will prepare 5 days of meals AND deliver!  Almost too good to be true.  Now they haven't seen the list of his food allergies yet but I told them about his chicken phobia and they said they could substitute another meat.  So it sounds promising.  I brought home one of their breakfasts (the spinach tortilla egg wrap) and one dinner (eggplant parmesan) and they were both delicious.  I'm going to share my (no tomato) tomato sauce recipe with them.  Anyway it gives me an option to try.  And the pricing was very reasonable as well.  In fact it's cheaper than what I spend a week at the grocery store.

By the time we got back home from our outing I had fever and chills.  Not the best way to end a really good day!

Today I have kept my temp down by taking Tylenol every 6 hours.  I'm scared if I'm running a temp on Wednesday they might not do the procedure. I also went over to Mike's and cleaned his condo.  Then I came home and made about 8 servings of his spaghetti sauce to put in the freezer.  It's been a busy day!  I also sent 4 huge boxes of clothes to Goodwill.  They were all 5 sizes too big and I finally have enough confidence in myself to let them go.  I went from a size 22 to a 12.  I can't believe it!  I still have another 11 pounds to lose so I don't know where I'll end up on clothing size but I'm determined I'll never be a size 22 again.  I actually weight less than my daughters!  I gave my size 14 clothes to my daughters but they are both doing Weight Watchers now and I'm sure they will pass me very soon.

Oh Ron also saw the neurologist this week.  Ron tried his best to get him to say he could drive but nope....it's a state law.  Can't drive for 6 months following a seizure as long as you don't have another one.  The doctor did tell him (wish he hadn't) that his office doesn't report patients to the state but just let's them be on the honor system.  In other words drive at your own risk.  Now it will be twice as hard for me to keep Ron from behind the wheel!  He also changed Ron's seizure med to one that isn't supposed to cause agitation.  

So that's it in a nutshell!  We are still plodding along!  I thank everyone for their insight and best wishes.  It really helps keep the spirits up!  So thank you!
 

Saturday, December 30, 2017

Keep the faith

Hope everyone had a wonderful Christmas.  Although I was sick I did manage to make it to my daughter's house Christmas Eve and spent it with my favorite two-year old!  She had a great time.  She played elf and passed out all the gifts.  She was trying to distinguish the difference in the two Mikes.  (My son-in-law and my brother)  She finally came up with her own method.........son-in-law was "that" Mike and my brother was "old Mike".  It was funny how she came up with that on her own.

I finish my steroids tomorrow.  I finished the antibiotic Friday.   I am still wheezing and coughing so we will be seeing the doctor on the 4th or 8th.  I am anxious to see what comes next.  I guess the bronchoscopy and maybe the lung washing.  I'm just ready to get to the bottom of the problem whatever it is.

My older brother has not spoken to me in about a year.  I just gave up.  I haven't tried to contact him either but I sent a Christmas card.  I guess that was sort of an olive branch although I never did anything to deserve the way he has acted toward me.  I'm too afraid to make much of an effort because I have no idea how he or his wife would react.  I'll just focus my energy on taking care of Mike.

The other night Ron was talking to me about what he would do if something happened to me.  He said he would probably move to the condo with Mike and take care of him.  If possible he'd sell the one bedroom and get a two bedroom.  He would take care of him until Mike went to a nursing home. That's the first time he's ever said anything like that but it definitely would be cheaper to keep just one residence.
Ron's income would drop significantly without my retirement.  I don't know if he was telling me that so that I might stop worrying about what happens to Mike if I'm not here but it was a very selfless thing to consider.

It is almost the New Year and I wish I felt more hopeful for the country.  I've been donating to any congressional campaign running against the current congress.  Especially the democrat running against Paul Ryan.  I'm hoping to get back to the democratic headquarters here to continue volunteering.  They have been closed during the holidays and of course I was sick.

I'd also love to attend the Women's march January 20th but I know I can't be out in the cold air.  Speaking of cold air.....we are in the single digits right now.  We got the arctic blast from the North.  I don't know how they handle this cold all the time.  We are lucky right now because the wind has been mild.

Well, here is wishing everyone a healthy, prosperous and happy New Year!

 

Thursday, December 21, 2017

When it rains!

As the old saying goes, "When it rains it pours".  Over the weekend I got really sick with bronchitis again.  I was too sick to drive to the city to see the doctor and of course Ron isn't allowed to drive so fortunately my daughters are on school break and came to our rescue.  My son-in-law came down with the flu and I didn't know if I had the flu or what because this time I have been so much sicker than before.  Fortunately I didn't test positive for the flu.  

The doctor put me on yet another round of steroids and antibiotics.  I've been in bed since Saturday.   The doctor called me on Tuesday and said if not better in 24 hours he wanted me to be admitted to the hospital.  I've just stayed low since desperately trying to avoid being in the hospital.  

Today I actually got dressed.  Still feel pretty bad but just making myself do as much as I can.  I know I'll be going to the hospital after January 8th because the doctor wants to put the camera down my lungs to see what is going on.  Sounds like a boat load of fun.  My only goal right now is take care of Mike (my daughter is going to help me make his meals for next week) and be home for Christmas. 

Mike just called me and wanted me to go to the store and get him potato chips.  I had to tell him that he is capable of doing that.  He goes to Walmart all the time.  He's testing me to see if I'm still here for him.  

Normally I like to believe I'm in control of everything but this time at the doctor visit I broke down and cried.  My voice is almost gone so it was hard for him to hear me.  I asked him if stress could be keeping me from getting well and then I proceeded to tell him my husband has fought cancer for the past 9 years, I take care of my brother with schizophrenia oh and my husband was just hospitalized the week before because of two grand mal seizures.  Once I heard myself saying it I just started to cry.  He didn't really answer the question he just stared at me and said "That's a lot of stress."

I keep being reminded that I HAVE to come up with a plan for my brother if something happens to me but I'll be damned what that could possibly be especially now with all the uncertainties is this country.  Then I just added this administration to my list of stress.  I've worried so much about it all, called legislators who don't give a crap and have just felt sick over it for the past year.

But, life just goes on and all we can do is try to roll with whatever life throws at us.

Saturday, December 16, 2017

I remember when it was only me!

I was alone for 37 years and did everything for myself.  I have installed thermostats, changed oil in my car, done minor car maintenance and pretty much took care of everything myself.  I've only been married 6 years and somehow became dependent overnight.

I knew I was spoiled by Ron but now I am very aware of that fact.  I got so used to being able to ask him to run to the store for me and he always took my car to fill it with gas.  That doesn't even touch the tip of the iceberg on things he has done for me.  Now that I am the only driver in the family I can really see how much he did for me. 

Yesterday we took Mike to his doctor's appointment.  This requires driving on highway 9 which I've never been comfortable on but now it is really nerve wracking because I can't see that well.  I wish now I had gotten the cataract surgery back in September.  I wouldn't be in such a mess now.  I really can't see well enough to drive after dark and it's getting harder and harder in the daylight. 

I'm taking Ron over to Mike's to watch basketball but since the games aren't over until after dark my son-in-law has kindly offered to pick Ron up and drive him home.  In the meantime I have to get groceries so I can start preparing Mike's meals for the week. 

Being together every minute is both a blessing and a curse.  Ron's sudden lack of independence (being able to drive) has made him a little cranky.  I understand it but that doesn't make me immune to his sting.  I'm supposed to watch for any reaction to his seizure med.  How can I tell if it is the medicine or just a normal reaction to sudden loss of independence.  He keeps hinting that he isn't going to wait the 6 months to drive.  I told him if he doesn't he will risk losing his driver's license all together and that if he had an accident and killed someone he wouldn't be able to live with himself.   I have a feeling this is going to be an ongoing conversation.

To sum things up.  It's only been a week since Ron got released from the hospital and I'm still standing.  There is a lot to be grateful for including the fact I had all my Christmas shopping done before he had the seizures.  All the gifts were wrapped and under the tree and so far there have been no more seizures.  Mike didn't flip out and we are adjusting!

Saturday, December 9, 2017

Home

We are home now.  Finally got checked out of the hospital about 3:30 this afternoon.  Sent home with a lot of instructions.  Ron has to make a follow-up appointment with the neurologist, they also want him to get a sleep study done (possible sleep apnea) and he is to follow-up with his primary care physician within a week.

We got his prescriptions filled and he is taking Kepra 2 x day. An antibiotic 4 x day plus his regular medications.  I know he is tired but he sure has been cranky.  Mike kept calling over and over after we got home and it was just making Ron irritable.  I shielded all the calls but just the fact that Mike was calling was irritating Ron.  I can see I'm in for a rough ride for awhile.

I sure hope we don't have any more seizures but I guess I'm prepared if we do.  If there is a next time I am to call the doctor immediately if it lasts more than 5 minutes.  (Oh Lord I don't know if I'll last if it's more than 5 minutes.  I hope I'm not afraid to go to sleep tonight.  I'll be on alert for the slightest noise.  I felt safe while he was in the hospital because I knew there were people to handle it and it wasn't all on my shoulders.  

Somehow I managed to get all Mike's meals prepared today and I'll take them to him tomorrow.  I need to spend some time with him so I can reassure him that I'm still going to take care of him.  In fact I have to take him to a doctor's appointment Friday.

I hope that I can sneak over to see little Piper this week.  I miss the little stink pot.  Nothing like a two year old to make you feel better.

Friday, December 8, 2017

Day 4

Well we didn't get to go home today.  Although Ron's fever was back to normal they wanted to give him IV antibiotics today and maybe home tomorrow.  Tonight he had blood in his urine so I am guessing he has a UTI brought on by the straight cath they did in the ER Tuesday.  This may have been the cause of the temp.  Anyway, they did a urine culture so I'm sure they will get something for that as well.  He did say he felt a lot better today and he was disappointed he didn't get to come home.

They have him on two seizure medications, Kepra and something else.  Side effect is fatigue.  If it gets too bad we are to let the doctor know.  Another side effect is aggression.  Again if it gets bad notify physician.  Sometimes I think drugs cause more problems than they cure.

I left the patient sleeping this afternoon and went to get a haircut.  After wards I ran to the grocery store to get what I need to make Mike's meals tomorrow.  While I was in the store I was fretting that my hair was cut too short when a very nice lady about my age stopped me and said, "I love your haircut...where do you get it cut?"  I gave her my hairdresser's name and thanked her for the compliment telling her I had just been fretting about it being too short.  I told her my husband would prefer I had hair cascading  down my back but the only thing cascading I me is the loose skin on my neck.  We ended up chatting a little while and then exchanged phone numbers with a promise to meet for coffee after my life settles down.  So fun.........never know when or where you will make a new friend.

I have a feeling my life is about to get really busy.  With Ron unable to drive he won't be able to help me as much with Mike.  Mike has really done great the past 4 days but his anxiety is starting to build.  When he gets focused on himself and worried about how HE is going to be affected by all this it kind of gets under my skin.  I realize it is his illness but it sure is irritating.  He wants me to bring Ron to his condo on Saturday to watch football with him.  I told him he has to be patient with Ron and give him time to get back on his feet.  I'm also concerned about how all these meds may impact Ron's disposition and whether he will continue to have enough patience to deal with Mike.  It was hard before all this happened.

Anyway, it's just another chapter we have yet to write.