Tag Archives: Diagnosis

What an Exciting Day!

13 Jan

So look what came to Charlie in email.

Dear Mr. Shively,

The American Kidney Fund appreciates your interest in our Fifth Annual Kidney Action Day on Capitol Hill. We would like to invite you to join us March 2014 in Washington, DC.

We hope you will accept our invitation. Please email Nina DiPadova to accept your invitation by January 13, 2014. Once we hear from you, we will begin to discuss travel and lodging information. Please note, we will coordinate your travel for you to arrive into Washington, DC the morning of March 4, 2014 and begin advocacy training that afternoon.

Because of your advocacy efforts, we continue to create awareness and help make a difference for individuals and families with, or at risk of developing kidney disease.

Sincerely,

Nikia Okoye

Director of Government Relations

SO WHAT DO YOU THINK CHARLIE’S ANSWER WAS???   YES!!!!!!!!!!  He is so excited. He’s never been to the capital before.  He keeps saying “we’re going to Washington”  Such excitement!  It’s going to be a fun trip as well as  a learning trip. He is looking forward to getting to know other advocates and hopefully having the opportunity to meet with some of the members of congress and let them know about the things that are a problem for kidney patients and their families. I am very proud of Charlie. He has been given several opportunities to speak with in the last few months and has done very well each time.  What better person to be an advocate than someone who has first hand knowledge of the disease and what it can do to you and to those you love.  Please keep him in prayer as this time draws closer.  We actually also got a phone call from the American Kidney Fund as we were on the way to go get Charlie’s books for the new semester which will start next week.  

We did make it to the school and were able to get the books and all of the supplies he should need (at least everything I could think of) to the tune of $446.  Books are SO EXPENSIVE.  I sure hope we use them ALOT this semester.  One of the books was $167.  I looked for the gold leaf or the engraved pages or something, but nope, it’s just a paperback text book. We are both looking forward to the adventures that this semester will bring.  We know there is going to be a ton of writing in the English Comp class but Charlie  made it through Comp 1 with an A so hopefully he will do well this semester too.  He also has a speech class, that one should be interesting. He does well with public speaking so we aren’t real worried about that one.  The third class he has is Humanities, now that one may be a bit challenging, but I think we are both ready for it.  I am seeing LOTS of note taking this semester and perhaps we will record the lectures too, we’ll see.

As usual we are still waiting and praying for the kidney to come.  God is in control and we are patiently waiting for HIS timing with this. We are ready any time that he is.  Each day we awaken with the question “will today be the day?”  Who knows.  It’s been a long 9 years but Charlie has taken it all in stride. He is more than ready to vacate his dialysis chair and live a more fulfilling life. It would be good to be able to plan a vacation without having to schedule dialysis treatments during it, but if that’ s what’s got to be done then we do it. Look at all of the new people we can meet at a new dialysis unit.  Each of them has a story, a personal walk and each of their stories brings them closer together.

We are trying to put together a cookbook to be used as a fundraiser. We are asking if anyone has any healthy recipes that they would like to contribute please email them to Sherrie at gsservant @gmail.com  she will compile them and we will let people know when the book is put together.

Thanks again for prayers and notes. We love each of you and wish you a prosperous and blessed new year~

Charlie & Sherrie

Confusing Week…

16 Sep

Well, we made it through Monday. Charlie had a Theatre quiz this morning which I think he did pretty well on.  The Music Appreciation listening quiz, not so well.  It’s difficult to change a pattern.  When most people sit down to listen to music they listen to the words.  The thought of listening to the instruments and the style of the music don’t really cross the mind.  The Music Appreciation class is designed to teach students how to listen to music.  Charlie is starting to get it.  He was watching something last night and started naming the instruments in it.  Good sign, guess that means he must be learning something from the class!  Please keep it in prayer though because he has a long way to go with this one.  English class is still writing.  The next thing he has to write is regarding a moment when something became clear to him (an aha moment).  That should be an interesting essay.

The rest of this week is going to be kind of confusing.  Tomorrow will be dialysis and then again on Wednesday. He had to do it that way so that he can be with me for the Social Security Disability hearing on Thursday.  Our daughter is going to come and get us for that.  Charlie and Kim will not be able to join me.  It will be just me, the judge, the lawyer, a physician and a vocational expert.  Apparently the room is not big enough for Charlie and Kim to come along for moral support.  Please pray that this hearing goes well.  We have been waiting for this for a year now (filed in May 2011, rejected twice, hearing filed for in September 2012).  Glad it is finally here and that it will be over soon.  Both of us are praying that I get it because then things will be a little easier and we can finally start paying off the bills we are behind on.  The other thing we are looking forward to is for me to be able to go and see a doctor without having to use the Emergency Room.  I have not had a regular doctor since 2011, it’s been a real pain when I need to see someone or get a prescription refilled.  The social security will allow us a little breathing room and it will definitely make Charlie feel a little better about financial things.  We should know the decision withing no more than 2 months.

Saturday is Movie night.  Those of you who don’t know, Charlie started a movie ministry at Oak Ridge Baptist Church about a year and a half ago. He shows family friendly movies on the third Saturday of every month.  Doors open at 6pm and the movie starts at 7pm.  Admission, popcorn and lemonade are free. We have pizza available for $1.00 per slice. We also have door prize giveaways at the end of the movie.  It’s a great time of fellowship and entertainment.  If you would like more information you can email us at oakridgeafterdark12@gmail.com or call Charlie or myself at (210)859-8085.  The movie night  day is always a busy one.  Charlie does dialysis, then comes home and naps for a bit and then it’s off to the movies!   It is a lot of work but it’s well worth it in the end.

Our weeks are usually pretty booked, and usually they are pretty consistent as far as days and times go, but this week will be a little mixed up.  We are going to have to miss another day of school (Wednesday) so that we can make the change for the hearing.

Oh and then we have the foot.  Charlie has been walking a bit and on Friday night he had said his foot was hurting.  He felt what he thought was blood on his sock and asked me to look at it.  No blood but it was really wet.  I took the sock and the dressing off and low and behold, the foot had a huge spot that had blistered.  The blister was around and under the old callus.  I cleaned the area and then debrided it..  I think we are going to have to make a trip to wound care as the stuff the was coming out was from under the callus.  I am hoping that does not mean that there is a new wound developing at that site.  I redressed the wound and then checked it yesterday, so far it looks okay, but I think we are going to schedule the appointment to make sure.

Never a dull moment here that’s for sure.  We are both looking forward to the Kidney Action Day walk on October 6th. That’s a Sunday.  It will be at the AT&T Center.  Lots going on there.   (This information is from the American Kidney Fund flyer) Kidney Action Day is all about YOU and YOUR health. Join us at the AT&T Center for free kidney health screenings*, healthy cooking demos and healthy food samples, interactive fitness demos, local entertainment, children’s activities, and our Kidney Action Day Walk. Charlie was contacted by the American Kidney Fund regarding using his story, we will let y’all know what happens with that when we know more.

Okay, it’s almost midnight and I still have to do the dishes (I fell asleep after dinner), but I wanted to get this off to y’all so you could be in prayer for this week.  I know I have said it before, and I will say it again,  y’all are wonderful.  Your prayers and words of encouragement are what keep us going on this walk and wait for that kidney.  We believe that God already has it waiting for Charlie, and that in His time he will reveal who has it and where.  We are waiting for that to happen but we know that we need to be preparing for it.  We are trying to brainstorm ideas for fundraising and need some help.  I used to be able to do all of that kind of thing on my own, it just doesn’t seem to be a possibility right now.  I spend my time trying to make sure Charlie’s health is okay (and mine too) and make sure that homework gets taken care of.  Those two things in themselves have become full time work.  Anyone that has any ideas or who would like to put together a fund raiser please contact me so that I can put you in touch with the non-profit that is working with us.  If anyone would like to donate to the account for Charlie’s kidney transplant you can do so by going to helphopelive.org.  When you get to the page there is a box in the upper right corner.  Type in Charlie Shivley and it will take you to Charlie’s page.  There is a button that says donate now, if you click there you can make a secure donation.  All donations are tax deductible.

Now I really am going to sign off.  Y’all have a great night and a bless week.

Charlie & Sherrie

Sensory Detail

12 Sep

This week in Charlie’s English Composition class he turned in one Essay Quiz which was on Micheal Montaigne, the person who created the Essay.  Now we know where essays came from and what they are supposed to be used for.  The assignment yesterday was to write using sensory detail.  He has to write two paragraphs, one describing a food he HATES and the other describing a food he LOVES.  I thought it would be fun to share one of the paragraphs today.  The idea is to describe the food using the five senses: Sight, Sound, Smell, Touch and Taste.  Here is the paragraph on the food he hates.  Let me know what you think of the description.  🙂

I hate okra.  The solid pods boil in the pot and look all  green and slimy, reminding me of nasty green boogers. It’s nearly impossible to pick it up as the gooey mess slithers out of your fingers and you hear it plop on the plate like a frog flopping on a lily pad.  The smell reminds me of vomit. It tastes like snot running down the back of your throat.  I really hate okra!

Okay, there is the sensory detail paragraph on the food Charlie hates.  We had a good time writing that paragraph.  Does it create a picture of the food he hates most?  I think we used all 5 senses.  Now we are working on the food he loves – rib eye.  We are stuck at what it smells like.  I’ll post that one when we finish it.

The whole exercise is to get everyone ready to write a narrative essay on “a moment when you truly learned something”.  That one should be interesting too.  There are so many moments that he can choose from.  It has to be 3 to 5 pages long.  It should be an interesting assignment.  The English Professor is the same one that Charlie had last Spring when he had to withdraw from the class because he had been ill and missed too much school.  He loves her and has a great deal of respect for her as she is pushing forward against a second bout of cancer, but she is still teaching and moving on.  She is determined not to let it get her.

This week Charlie also had his first graded assignment in Music Appreciation.  He did well.  He is having a problem with the concepts and definition and listening (okay, no comments from the peanut gallery).  Listening to music for music is not an easy thing if you have never done it before.  He is having to listen to the musical pieces and try to pick out instruments, styles, and textures. I didn’t realize how much I already knew until we started doing homework and I could answer the questions as they printed.  I guess that’s because I started singing in choir when I was in second grade.  I don’t know how to read musical notes as far as their tone but I do know what they are and what the beats are and I do understand the styles and stuff so I feel comfortable trying to help Charlie through this challenge.  He has been able to recognize a few instruments while listening, it’s just going to take some practice.  His Professor for this class is wonderful.  He’s a priest and it was great to talk to him on yesterday and have him use an analogy using God to make a point to Charlie about music.

His first quiz in his introduction to theatre class is next Monday.  This class is his favorite, it is also one from the Spring Semester.  His Professor is amazing.  He takes time with the student and really cares about how they are doing and takes the time to listen to them.  It is impossible to get bored in this class.  The professor is always up and always funny, perhaps it is the actor in him but  the compassion for his students is very real. The class will be doing a project, which I believe that it begins next week.  They have to come up with an idea for a Broadway show and present it to the class.  It will be a group project so we shall see how it goes.  Charlie is the oldest one in the class, we could be parents to everyone in this class.

Charlie has also been in touch with the school newspaper and has a meeting with the Disability counselor next Monday.  I believe I wrote about the giant hill that they want us to climb to get him into the handicapped entrance to the building the Music Appreciation class is in when I last posted.  This has definitely been a challenge.  The first week of school there were tables set up with representatives from different programs and departments at the school.  One of them was the school newspaper.  We talked for about an hour and a half with one of the new editors about all of the access problems we had encountered on just the first day of school.  The issue about the access to that building, the problem with the handicapped doors not working, non-working elevators, cracks and missing bricks from the sidewalks….all of these are real issues to people who are visually impaired and/or in wheel chairs.  The newspaper came to the building and took pictures of me pulling the wheel chair up the 12 stairs to get to the cat walk and then the 5 stairs to get to the classroom.  They wanted people to see what Charlie goes through to get to class.  It really is not right.  There is talk (there has been for several years) of building some kind of ramp but it hasn’t happened yet.  We did see them repairing one of the door openers yesterday and we were told that it would be working when we get there on Friday.  He is meeting with the counselor to discuss creating some kind of a Disability Advocacy group for the campus.  He wants to hold a rally at the flag pole for anyone who would be interested in getting a group together.

Let’s see, what else has been happening here?  Oh, there is another important thing.  Charlie is an advocate for the American Kidney Fund.  Last month he got an email because they were looking for people willing to share their story for the Annual Kidney Walk, which will be held at the AT&T Center here in San Antonio, on October 6th.  We wrote back to them saying he was willing to help out. I also included a little of his bio and then the address to the blog.  Well, on Monday morning we got a call from the American Kidney Fund in Washington, DC.  They would like to have Charlie share his story.  She said they will send the information to the media and they will be in touch with Charlie.  Could this be a start of his public speaking??  Could this be the time when someone will hear and have that long awaited kidney?  Who knows.  We shall see.

The other thing that is coming up is my Social Security hearing.  Charlie and I will be going on September 19th.  Hopefully this will be it and I will be awarded my Social Security Disability.  The lawyer is very positive and said that we have a nice judge.  We had a meeting with the lawyer last week.  He said that my age, my inability to do a whole lot anymore, and my work history are all pretty positive indicators that I should get it.  We are praying and covet your prayers that this does happen as it will make things much easier, financially.  We have a very hard time right now but God has seen us through these last two years and I know that as long as we remain faithful He will be there for us.

Well folks, I guess that’s about it for now.  As usual, thanks so much for your support and your wonderful words of encouragement.  You all mean a great deal to us.  Please continue to pray for:  Charlie and school (two quizzes on Monday). Charlie’s tooth (still have not been able to get the one that broke fixed.). A Kidney. The success of the Kidney Walk (there are so many people who benefit from it). Finances. Fundraising. Social Security hearing.

Blessings to each and every one of you,

Charlie & Sherrie

Second Week of School – Challenges

5 Sep

Well, last week was interesting.  First it was Charlie’s tooth. It had cracked and the filling fell out.  We went to the dentist and they want $3000 to do work.  He needs to have a deep cleaning of his gums  done and needs a root canal.  They can’t do the root canal until after they do the gums and to do just the gums is $977.  They tried to run a credit check under both of our names but could not get anything to come up, therefore they want $300 for a deposit and then they will be able to work on payments with us.  That all happened on Tuesday so we missed Music Appreciation class on Wednesday.   We left the house at 6:30am that morning and got home at around 7:45pm. It was a very long day.

On Friday we woke up early (me at 4 and Charlie at 4:20).  I noticed a problem hearing but went about making a sour cream coffee cake for Charlie’s Theatre class.  As the morning went on I noticed the hearing was getting worse.  At 5:40 we decided to take me to the Emergency clinic down the street.  They looked in the ears and did a CT Scan. The brain looked good and they didn’t have the equipment to do anything else.  I was told I needed to go to an ENT doctor.  I have an audiologist and called the clinic.  I was referred to the ER at University Hospital and told to ask them for the on call ENT doctor. We did that and they got the doctor.  He checked both ears (the left one is already deaf- I lost hearing in it about 4 years ago – went to bed one night and was fine, then got up and was deaf on the left side.) and then decided to do an MRI.  We did the MRI and then we went to the Audiologist’s office which was across the street.  They did the hearing test and confirmed that there was substantial sudden hearing loss in the right ear.  They set up and appointment with the ENT doctor for Tuesday (Monday was a holiday) where the plan was to inject the ear with steroids.  The injection would either make the ear better, do nothing and it would stay the same, or it could make it worse.  Not exactly what either Charlie or myself wanted to hear.  On an up note, Charlie walked most of that day and did well.  His foot looked great after that.

We got up on Tuesday and I went to Dialysis with Charlie.  We left the house at 5:50am.  We were picked up from dialysis at 11:15am and they took us to to the clinic. Now any other time they would have other pick ups and drop offs but we went directly to the clinic.  The paper that was given to us at the ER said the appointment was for 1:30, we got there at about 11:45.  When I registered at the clinic they told me that the ER scheduled the appointment without calling to see if there was an opening and that the actual appointment was scheduled for 2:30 but they would see us as soon as they could. We went to the cafe and got a sandwich then back to the clinic.  At 1:00 they took me back, Charlie decided to stay in the waiting room (after about 20 minutes he changed his mind and he was escorted to the room I was in).  We were in that room from 1- 2:30.  At 2:30 they took us to the Ear room.  Kind of a scary looking place with all the surgical stuff in it. We waited until 3 and then I went out to the front office and asked if anyone knew how much longer it was going to be.  The nurse was surprised I hadn’t had the injection done yet. Charlie and I were really tired of waiting – Charlie especially as he had had dialysis and had not been able to rest yet. The nurse came in and said the doctor would be in in about 20 minutes and that the procedure would last about an hour, including the recovery time.  That didn’t make either of us happy.  We then asked for the clinic director.  She came in and then low and behold, so did the doctor.  She told us what was going to happen then she disappeared for another 10 minutes.  We lodged the complaint with the director who is following up with the ER and the clinic to see where the problem started.  I did have the procedure and we finally got out of the clinic at 5:30 with a prescription that was to have prevented blood from crusting at the injection site. I called the pharmacy to find out how much the prescription was and was told $164.00. Needless to say that wasn’t going to happen.  The pharmacy said they would contact the doctor int he morning to see if there is anything else I could use.  We left the clinic and then we called for the ride and were on hold for about 15 minutes.  The ride showed up and we were on the way home when the cab company called (the Via Trans people called them) and said they were waiting for us at the clinic.  Was a VERY LONG day!!!!   Both of us were exhausted by the time we made it home (7:15pm).

We went to school yesterday.  I got up at 4 again and made the cake and we took it to the Theatre class where it was eaten up.  It did come out good if I say so myself!  Made it through all of our classes and were heading out to the pick up area when we realized that we didn’t cancel the Transportation people when the Wound Care clinic cancelled Charlie’s foot appointment.  They never come on time when they come so Charlie called them as I was walking him to the pick up spot.  We had arranged with a person from Church to pick us up so we could go get my hearing aid from the Via Trans lost and found.  He was going to call us at 2 so we could give him directions.  The van was already there to pick us up and they said they would take us over to get the hearing aid and then take us to church.  Charlie had the phone and was on hold with the transportation company and the friend from church called.  Charlie felt so bad about him coming our  way because the van was there.  He explained what was happening and thought it would be easier to take the van because we had the wheelchair and he thought the friend didn’t know how to get to us.  He is concerned that the friend is now upset with him.  It wasn’t his intent to do that.  Sometimes life is kind of hard and it’s hard to know what to do in situations like this.  God blessed us with this friend and his wonderful wife.  They have both been a great blessing to us.  We sincerely hope and pray that the friendship has not been damaged by this.

So now we are waiting until next week for another appointment at the Audiologist and then with the ENT doctor. I have already decided Charlie will not be going with me.  He will go to dialysis and I will go to the doctor.  Just got to find a ride there now.  I think the plan is for them to make the appointment for Thursday so that I only have to go to one building.  We will update when we have more hearing information.

Today was dialysis again Charlie had a good session and then went in for a nap.  I, for one, am very glad that this week is almost over, it’s been a very long one.  School tomorrow and then on Sunday Charlie and I are responsible for the donut social at church.  We are not having donuts as it is less expensive for me to bake a couple of sour cream coffee cakes and some Kolaches.  It will be different but it will be good.  🙂 Charlie will start choir again this Sunday and has a Deacon’s meeting so Sunday morning will be busy.

All I can say is thank God for being there with us through all of life’s challenges.  He is the only way we both keep going. He gives us challenges so that we can overcome them and use them as a testimony for Him and all He can do for us.  Thank you God.

Praying a good weekend for all of you.  Thanks for the prayers and words of encouragement, please keep them coming.

Pray for the following:  1. Charlie at school. 2. Charlie’s walking.  3. A Kidney.  4. Finances.  5. Fundraising.

Blessings to all.

Charlie and Sherrie

Really???

27 Aug

So, we made it through the first day of school.  It hasn’t rained all summer but yesterday we had to have an umbrella to start the day off with!  I have really gotten good at driving the wheel chair one handed.  I was able to maneuver it with one hand as I held the umbrella trying to keep myself and Charlie dry.  Worked okay until we got onto the sidewalk.  You would think with all the money they are collecting from the new parking fee at the school that they would have enough money to replace the cement and the bricks at the handicapped drop off but apparently not because we made a complaint about it back in May and it still hasn’t been fixed.  It’s probably going to take one of the blind students to trip, fall and get hurt before something will be done.  So sad.

We got to school and went to the student center.  Charlie loves the Mexican hot chocolate so we got some of that and a breakfast taco and waited for the bookstore to open so he could get his books.  It was due to open at 7:45 so we got on the elevator at 7:40 and went down stairs.  Well, 7:45 came and went….and so did 8:00 and 8:10.  Apparently the manager was stuck in traffic (People here haven’t seen rain in so long that they just forgot how to drive in it) and there was no one else with a key.   They finally opened and I went to the office to pick up the books.  We had placed the order online so it would be ready for us to pick up when we got there, of course no one could find his books and they weren’t in the alphabetical notebook of all of the orders pending pick-up.  Someone finally arrived and was able to find them in a pile on the counter.

Once we were done there we went over to Disability Services to see them and pick up the paperwork that had to be signed by each instructor so that they knew I was officially Charlie’s note taker.  We had a good visit and then we looked at Charlie’s schedule again before leaving.  It was then that we realized that the Music Appreciation class was not in the same building as the Theatre class.  I wasn’t sure how to get to the other building.  I knew that there was a catwalk between them but wasn’t sure how to get the wheelchair over it.  I asked about an elevator and was then told there was only one way to get to the handicapped ramp for that building.  I would have to walk down a street and up a steep hill (pushing the wheelchair).  I thought about it and talked to Charlie about it and we decided that we didn’t want me in the hospital on the first day of school.  So, Charlie walked up 12 stairs and God provided two absolutely wonderful people who took the time to carry the wheelchair up.  We got to the top and put Charlie back in the wheelchair to walk across the catwalk, got in the door and there were 5 MORE stairs.  Charlie walked those also and those wonderful people carried the chair up them too.  Luckily the class was right there.  So we got into the class and all was well.  Then we had to get back over the catwalk.  This time Charlie walked down the 5 stairs and I rolled the wheelchair down them, put him in it and walked across the catwalk and then…….Charlie did the 12 stairs and I SLOWLY wheeled the chair down them.  Narrow stairs, not easy to do a wheelchair on, but MUCH BETTER than the down the street and up the hill thing.

So we also encountered an elevator closed for PREVENTIVE MAINTENANCE (seriously…on the first day of school?????), and every Handicapped automatic door that we had to use did not work.  Between that and the poor condition of the sidewalks I definitely got my cardio workout for the day.  My feet were really tender this morning but it was okay.  I am very pleased to announce that Charlie wasn’t hurting at all after his exercise!!!  Maybe that will be his PT.  🙂

The classes seem like they are going to be fun.  The only one he is really concerned about is his English class.  LOTS of reading and writing in this class.  Drama will be fun, he has a great professor.  Music Appreciation seems like it will be interesting. His Professor is a priest.  He told the class they could call him Father or Brother or Professor.

All in all things went pretty well.  Today he had dialysis, no bleeding, thank goodness.  They decreased his heprin and that seems to have stopped the bleeding problem  He bled for  full hour last week and they decided perhaps his blood was too thin.  Hopefully this will be a permanent fix.  Other than that no real excitement today.  He is napping right now and we will do homework after dinner.

Praying that all have a blessed week.

Please pray for:  School.  Charlie’s tooth (it cracked and the filling is falling out.  He is going to the dentist tomorrow). Kidney.  Finances.  Fundraising. Movie Ministry.

Blessings to all.

Charlie & Sherrie

Here We Go!!

24 Aug

So in the last week or so we have had a lot happen.  Charlie’s foot has FINALLY healed!  He got his new shoes and we have an appointment with the podiatrist to start talking about physical therapy to learn how to walk again.  Charlie starts school again on Monday.  Please pray for a successful semester.  He is a little worried right now but all will go well.

I only have about 7 minutes before I have to get off of the computer here so this is just a short note.  I will be back on early next week to make sure and update everyone on what’s happening here.

Blessings to all.

Sherrie

 

 

Moving Right Along….

14 Aug

Good Morning to all.  Hope each of you are having a great day!  Been a while so let me try and bring everyone up to speed.  Let’s see, the last time I wrote I believe we had just gotten home from the Pacemaker surgery.  Charlie is doing well things seem to be in order.  He did have one mishap yesterday at dialysis when he was walked into a corner of a counter, as a result of that the pacemaker area seems a bit swollen.  He had a visit with a nurse yesterday and they checked the pacemaker.  It is functioning well and the wires are all still attached.  So things are okay in that realm.

On Friday we are supposed to go and get the new shoes.  Hopefully this visit will work out better than the last.  I called and asked them to please check the shoes, to make sure they were not defective, BEFORE we came down to get them.  They were to have done that last Friday and then call us to set up the appointment to go get them.  As usual they didn’t call so I had to call them on Monday.  When I called I asked to make sure the shoes had been checked….low and behold, NO ONE had checked them yet.  They put me on hold and checked the shoes, assured me that they were okay and then they scheduled our appointment for Friday.  This morning I got a call from the Shoe place asking us to call and rescheduled our MISSED APPOINTMENT?????????  I called back and all I could get was a recording saying they couldn’t take the call and to leave a message.  I left a message and they didn’t call back in 30 minutes so I called again.  I spoke with the young lady who left the message and she said she was confused too because she remembered rescheduling the appointment with me but no one had it any where!  Grrrrrr.   Are all orthotic places like this??  The last company we dealt with was just as frustrating, that’s the whole reason we switched.  This one is just as bad.  Guess  I need to really research for a new one for the next time we have to get new shoes for Charlie.  Anyone know a good company?  One that really takes the time to care about the customers?  The last two were EXTREMELY lacking in customer service!!!

So we are also preparing for school for this semester.  August 26th will be the first day for Charlie.  We thought we were only going to have to purchase one book this semester but nope….the English class that he started last semester changed books so there are two.  The books are so outrageously priced.  He has a Music Appreciation class and the text for it (actually it’s 5 CDs) is $190.  Crazy huh??  The English text is $81.  You could go broke just on the textbooks alone!! Sad thing is we now have all of the texts from last semester and they can’t even be bought back.  If anyone knows any good book places please let us know.  Thanks in advance for the info!!!

Well, I think that’s pretty much it for now.  Please pray for the following: Charlie’s health.  Our finances. The shoes.  The new semester. A Kidney.

Thanks for sharing this with friends and family.  The more people that know about Charlie the better.  Eventually we will get the kidney he is looking for.

Blessings to all.

Charlie & Sherrie

 

Finally Home..with New Hardware!

3 Aug

So Charlie went for the electrophyisology study (study of the electric workings of the heart) and he definitely did need a pacemaker.  The doctor tried to put one in on Wednesday, while he was already on the table, but was not able to access the veins necessary.  They wound up doing a venogram (sounds like a new kind of message huh?) and they found that the veins that they needed to use were blocked.  They sewed and glued the incision made in his chest and sent him back to the room.  We wound up staying Thursday so that they could insert the pacemaker in his groin.

Charlie started early Thursday morning with breakfast and then went to dialysis.  He was on his back there for 4 hours and then went back to the room.  No lunch because he was going in to have the pacemaker put in at 3.  They came to get him at 2:30 and I didn’t hear anything until 4:55.  Long wait.  The tech that had come to take him said it would only be about an hour and a half at most.  The surgery was successful and now Charlie is the proud owner of a shiny new pacemaker.  He was kind of blue when he found out he wasn’t going to be able to go home on Thursday night, but I think that he was thankful after the pain meds started wearing off.

So the pacemaker in the groin is not the usual.  It is usually placed in the chest.  the pacemaker tech told Charlie that they do put them in that spot for children as their veins are not mature enough to handle the leads.  He also told Charlie that they do maybe 1 or 2 a year that way in adults.  Charlie, of course had to be one of them.   🙂

We are home now, and the pain is still rather intense for him.  If it had been in the chest it probably wouldn’t be as bad.  He is taking pain meds which are allowing him to sleep and relax a bit.

I read the owners manual to him….lots of dos and don’ts.  He’s not real keen on the no bath or shower for 10 days rule.  (They don’t want the glue to come off too early.)  No more carrying the cell phone in his pocket (guess we need to find pocketed shirts). Stay away from the stereo speakers….the magnets can interrupt the pacemaker. (Who knew).  You can be near microwave ovens, but not convection ovens.  No MRIs, have to be careful even if in the room and it’s not on.  Then there is the airport.  There is a chance the case to it will set off the alarm!  So now he is a card carrying (literally) member of the pacemaker club!  One more ID to keep on his person.  Need to get him one of those card holders.

Hopefully, now that the heart is beating as it should and the blood is circulating correctly he will begin to feel better.  Perhaps this is part of the reason for him being so very tired so often.  We shall see!

Please continue to keep him in prayer for:  1. Healing from this surgery.  2. A kidney.  3. Finances.  4. Fundraising for the kidney (anyone with ideas please contact me so that I can connect you with the coordinator at Help Hope Live.)  5. School is to start at the end of this month.

Thanks for all of the prayers and well wishes.  Y’all are wonderful.  Please keep them coming, right now both Charlie and I are in need of encouragement.

Blessings to all.

Charlie & Sherrie

Shoe Frustration

30 Jul

Well, we went today to get the new shoes and inserts.  Got there, got right in, they took the shoes out and had them on Charlie before I got in.  Good thing I came in.  The shoes did not MATCH.  One was rounded and the other was more narrow at the top.  Same color, same material but different shape.  The tech tried really hard to convince me they were the same.  I was going to offer him my glasses so he could see the very OBVIOUS difference when he admitted they were not the same.  I had to actually place Charlie’s old shoe next to it to prove it to him.  Then he was going to put the new insert into Charlie’s old shoes.  He was sure they would be fine.  After he did it I looked and there was about a 1/4 inch space between the shoe and the insert at the heel.  Last thing we need is something like that to create another ulcer on the heal.  I hate when people won’t admit there is a mistake.  He kept saying over and over that they were going to have to order new shoes.  Then he had the office manager look at them to verify they were defective.  She saw it immediately.  I just don’t get it.

So, now we wait again for new shoes and then we have to see if the inserts will fit the new ones.  Maybe the end of August?????? Who knows.

Please be in prayer for Charlie as he goes in for his electrophysiology study tomorrow.  They said the actual study of the heart lasts about an hour.  They will then be approximately another hour for insertion of the pacemaker or loop recorder.  After that he has to lay still for up to 6 hours.  Not sure exactly what the up to 6 hours is but that’s what they said.  Today his blood pressure was really high at dialysis.  They wound up increasing one of his medications until they finish with tomorrow, at that point they will decide whether to continue with it at the new strength or to lessen it or discontinue it completely.

So many changes….we are going through some difficult financial things right now too.  Praying that September 19th gets here quickly and that we will finally have some relief.

Well, that’s pretty much it for now.  Please pray for the following:  1. Charlie’s procedure tomorrow.  2. The shoe situation to be resolved.  3. Finances.  4. A kidney.  5. Fundraising.

Thanks to all who have been praying, and for the encouragement.

Blessings to all,

Charlie & Sherrie

Where to Begin (Part 2)

23 Jul

Well, we did wait for word from the doctors so that we would know what the next step would be.  We finally heard from the Cardiologist on Tuesday.  I explained (again) what happened.  He listened and then said there were two ways to handle it:  1. we could go to the hospital and do a direct admission OR 2. we could come to the office and see him.  Bet you can’t guess which one Charlie chose!  Yep, we went to the doctor’s office on Wednesday afternoon.  We arrived at 12:30 and we were finally seen about 4.  The doctor came in, we discussed what did and did not happen at the hospital (everyone was under the impression that the electric doctor saw Charlie at the hospital.  He did see him, but he didn’t evaluate or examine him).  They then called a new electrophysiologist who was up the street from the Cardiologist and one of the nurses from the clinic drove us up there.  The doctor there asked that he be put on a 24 hour monitor to see if they could detect any changes.  We got the monitor, then left and went to church.  

The next day was another dialysis day so Charlie wore the monitor as requested for 24 hours.  We took it back at 4pm that afternoon, I also scheduled a doctor’s appointment for him so that we could discuss the results and everything else with this doctor.  Charlie will see him this Thursday.  Hopefully he will have some answers for us.

Hopefully we will be able to resolve all of this and we will hear about Charlie’s shoes before the end of this month.  All I can say is I am glad that Charlie and I both have strong faith, without it I just don’t have any idea how we would be able to make it through all of this junk.  

I know I have said often how much we appreciate your prayers and words of encouragement.  Right now we need both more than ever.  Thank you for sticking around even when the posts have been so sporadic.  I will be trying to get online every other day until we can get internet back at the house.  I come to the apartment business office and do research and hopefully can keep y’all up to date with any new happenings.  

Until next time we pray blessings for each of you and thank you again for your prayers and words of encouragement.

Blessings,

Charlie & Sherrie

 

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