Archive | May, 2013

Phones…Electricity…Frustration

30 May

Good Evening Everyone.  Well we are finally up and running after a frustrating week with our phone/cable/internet company, Grande Communications.  Most of you have probably heard about the rain storms we had here last Friday and Saturday.  Well, thankfully we didn’t float away and we also didn’t have any flooding (the window repair in the bedroom held nicely.)   We did however have a  phone issue.  As a result of the rain our phone went out on Friday, no dial tone so no calls, coming in or going out.  I called Grande and they had me unplug the phones from the wall and plug them all back in and then check the dial tone.  Still nothing.  I then explained that the phone number to the house phone is what is listed with the Transplant people.  The tech said he understood and scheduled an appointment for someone to come check the phone.  I asked why, every time it rains we lose the phone or the TV.  He wasn’t sure.  So we waited for someone to show up.  Instead they called us to say the problem was on their end, they had a power outage that they were not aware of.  Situation was fixed and all was well.

Saturday came and the rains came with it.  I thought we were all going to have to build arks to get through the storm. We lost power once and then it flickered.  Our patio filled up to the door with water, when the water receded all of the new mulch that had recently been put in the flower bed was on the patio.  Well, it was rain and therefore we lost the  phone again.  This time we didn’t know until my son called us and said that he had seen the news and all of the flooding in San Antonio.  He said they had been calling the house phone all day and it rang and rang.  He was afraid we had flooded and were in a shelter.  We had been able to call out just fine so we didn’t know there was anything wrong. I called Grande and went through the exact same thing we did on Friday. (You would think they could have looked at the notes and seen we had the same issue the day before but no….)  I again told the tech about how we lose the phone or TV every time it rains….he also was surprised.  I told him about that phone being the one listed with the Transplant people and he then said they could schedule a tech to come out….ON TUESDAY.  This was Saturday….I again explained the kidney issue and the fact that if they call and can’t get  you they move on to the next person on the list.  He then said that he could send it to the supervisors and see if they could get someone out sooner.  I said fine.  He said they would call the next day and let us know if someone could come out.  So on Sunday we got the call that they were on their way.  The tech came, looked at our phone then went out side for about an hour or so, came back and said there was nothing he could do, it was a maintenance issue on their end and someone would be coming out to look at the main panel.  He also said that he had another tech with him at the office (someone who had a little more experience).  I asked who could tell me how much longer we would be without a phone and he said call customer service.  He left and I picked up the phone to call Grande customer service and there was NO DIAL TONE.  While they were trying to fix the phone they broke it again!  I called customer service again and explained everything AGAIN.  The tech support person was great as he understood the emergent situation (needing the phone for transplant call) and he bumped it up to his bosses.  In less than 15 minutes the problem was found and the phone got fixed.  Amazing how you just have to find the right person so that they can do what should have been done in the first place.

I love the fact that we got rain and everything is so green and fresh looking.  The smell of the wet dirt makes me feel spring in a whole different way. The only thing I hate is that the Grande Communication company can’t handle the rain!  It’s totally frustrating.  They are the only cable company that is in the apartment complex (they have a monopoly here), so we don’t have any choices….if we did I would change in a heart beat.

So now we have phone, TV and internet (at least until it rains again) and life is good.  Sherrie has been feeling under the weather but is doing a little bit better.  The foot is doing okay, we know what the problem is and now the doctor has signed the prescription for new shoes so we should be on the way to resolving the issue.  We are still waiting on a decision with the “PARKING/ACCESS FEE for Charlie’s school. I am hoping they see how wrong that would be for the blind students who don’t use the parking facilities, parking lots or roads at the school.

Please pray for the following:  Charlie’s health, Charlie’s foot, Finances, Fundraising.

Blessings to all,

Charlie & Sherrie

Parking Fees for A Blind Person????

25 May

So yesterday we went to San Antonio College to meet with Charlie’s counselor and get registered for the Fall Semester.  We went from her office to the Bursar’s office to turn in his voucher for payment for his classes.  We were informed at that time that there was an additional new “fee” that everyone will be required to pay.  I asked what the $25 fee was for and was told it was a PARKING FEE.  I looked at the man in the window and said “I can’t justify paying a parking fee when we don’t even drive, or own a car.”  He said, “Sorry, but it’s a mandatory new fee that was  just voted on by the board on Tuesday.”  I then looked at him and said, “My husband, who is the student, is BLIND, therefore he does not drive.  How can you charge someone a parking fee if they don’t ever park here?”  The young man sent me upstairs to see the President of the college.  So we went to the third floor to talk to the President.  Well, the President wasn’t in, neither were any of the Vice Presidents….apparently it was a 4 day weekend instead of a 3 day one for all of them.  The office staff listened and told us that we could fill out a complaint form and someone would get back to us.   Then one of the staff people followed us out of the office and told us that she understands.. She advised us that she too has to pay and so does her son who goes to the college.  We then went to another office when they took all of our information and advised us that they had no answers to our concerns because this was a new fee and they din’t have any information on it.  The they told us they had had a complaint similar to ours on Tuesday and when they contacted the powers that be they were told to tell the woman not to worry about it because it hadn’t been voted on yet so it wasn’t  being enforced yet.  So, does that mean  if we had registered earlier in the week we wouldn’t have had to pay it????  I don’t think that was a very helpful story. This office also advised us that this FEE is a parking/access fee for the campus. It just made me more frustrated.  No one at the college had any information about this new “FEE”.  IF you are going to charge a fee you should be able to deal with questions.  We contacted the Director of Disability Services to see if she had any information and she also was totally unaware of the new FEE.  She started researching and is trying to contact Disability and Rehabilitative Services to see if the FEE can be included with all of the other fees that are included in tuition.  The young man at the Bursar’s office told us it is not able to be included in the voucher.   She is also trying to contact the people who do the rules to discuss the whole “Blind person having to pay a parking/access fee to the campus.   I thought it was bad when we heard that they will be charging people  $200 for a parking pass to the garage, and that doesn’t guarantee you a space!  So now they have the  $200 garage pass and a $25 fee on top of it.  They say they are going to use the money to fix the parking lots and access to campus.  Well the parking lots are getting destroyed by all of the construction traffic and equipment being hauled in and out to do all of the upgrades on the campus!  So have the construction people take care of  IT!  So, that was our excitement for yesterday.  We will keep you posted on how it turns out.

Today’s excitement has been the rain.  Poor Charlie got stuck at dialysis this morning because there was so much flooding in San Antonio.  They had to shut down the bus system and the flooding caused major delays and back up with VIA Trans (the people that transport Charlie to and from dialysis).  He wound up finally getting home around 1:00pm.  His normal pick up time is 11.   So this has been a long day for him.  He came home, ate and went to bed.  He’s pretty wiped out.  We are so looking forward to the KIDNEY and not having to do dialysis anymore.  It will be a wonderful change for Charlie.  No more having to get up at 4 or 5 and leave by 5:50, spend 3 hours on the machine and then come home wiped out.  That is his dream!

So please keep the following in prayer:  1. Charlie’s health.  2. Charlie’s foot.  3. KIDNEY.  4. Finances.  5. Fundraising.    If anyone would like to help with putting together a fundraiser or assisting with one, please contact us so that we can give you information on what to do.  We need all the help we can get with this as we have to raise upwards of $50,000.  This will cover the surgery, his after care visits, and the immunosuppresant drugs he will have to go on after he gets his kidney.  If anyone would like to donate please go to helphopelive.org   Once there you go to the box on the upper right side of the page, that says “Find a Patient.  Put in Robert Shivley and it will take you to his page.  On his page there is a secure link that will allow you to donate directly to his account.  There is also an address there that you can mail donations to. Donations made to the account are tax deductible.   Help Hope Live maintains an account for Charlie that will be used only for Transplant/Kidney related expenses.

Blessings to each of you.

Charlie & Sherrie

Where we Are Now….

21 May

So yes, we have another open wound on the foot.  Here’s hoping that when I do wound care today it will be looking better.  It’s not real deep so we are hoping that the collagen will take care of it quickly.  The “shoe guy” finally came and the decision was made to do new shoes and new inserts.  Looking at the inserts that Charlie currently has it is painfully obvious that they are not right.  Very frustrating for sure after all that we went through to get the shoes last time.  Hard to believe it has only been 9 months since we got them and they have done this much damage to the foot.  The inserts that Charlie currently has are a wee bit shy of the width of his foot.  Just enough to cause the pressure ulcers that he has on the side of the foot.  So, it looks like once we get the right fit we should be able to finally get the foot healed.  That would be great!!!  So please pray that this will be the answer.

On another note, we had a friend from church come forward who is trying to plan a banquet/fundraiser for Charlie.  This is just awesome.  As many of you know we need to raise upwards of $50,000 for Charlie’s operation/aftercare/immunosupressant meds.  That is just a base number, there will be expenses that I am sure we have not covered or we just simply weren’t aware of.  Anyway,  we will keep you posted when more information becomes available.  I thank God for the person who has offered to do this.  I had just finished telling our pastor how frustrated I was and how I felt like I should be doing more but just don’t have the energy right now….and what did God do, he sent our friend to let me know that it’s all okay.  That was my gentle reminder that He has it all under control and I need to wait on Him.  Thank you Amy and thank you God.

Many of you also know that we have created a Facebook page for Charlie.  Took a while to convince Charlie to do this but now that we have done it he seems happy that we have. The intent is to put out his plea for a kidney on at the very least a weekly basis.  I am also sending out information on Kidney Transplants and Live Donor information.  We are hoping that people will pass along the information to their friends and family.  If everyone I know would do that we would have a huge number of people introduced to Charlie and his needs as well as people knowing about Live Donor programs and what they are.  It would be wonderful if we could get a bunch of people to do the testing and it would be spectacular if we could find the KIDNEY through this means.  All of a sudden I am finding all kinds of websites for Kidney donations.  We are registering Charlie everywhere I can find to do it.  I am on a mission….to find this KIDNEY!!!  Please pray with me that it will come soon.

Just another quick thought…. thanks for hanging in there with us as we walk this walk.  I know that the posts have been kind of spotty this last week or so, that is because I have not been feeling well.  Please forgive me.  I am feeling better so they should be more consistent now.

Once again we ask that you pass this blog and Charlie’s story on to your friends and family.  You never know when something they read may inspire them to get tested for donation…it is through that testing that we are going to find the KIDNEY for Charlie.  Your participation could save his life.

I think that’s it for now y’all.  Please pray for:  1. Charlie’s foot.  2. Charlie’s health.  3. Finances.  4. Fundraising.  5. THE KIDNEY.

Blessings to all,

Charlie & Sherrie

Frustration…

15 May

Today we went to Wound Care to see the doctor for Charlie’s foot.  Well, the area that was being treated is just about healed BUT……now there is a new area that last week looked like a small bruise.  Apparently it wasn’t a bruise, it was a blood blister.  It has burst and now we have another area to be treated.  It’s just a small area so it shouldn’t take long for it to heal.  Needless to say we are both frustrated.   Today’s appointment was scheduled early in the morning so that we could see the person that does the shoes for diabetics.  Last week when we made the appointment we asked (several times) if they were sure the person would be there.  We were assured that if he had a scheduled appointment he would be there.  Well….guess what….YEP….he never showed.  They called the company and they were told that he should be at the clinic (which he wasn’t) so the nurse called the person’s cell phone and he never picked up.  That was at about 9:30 and then they called again at 11:00, still no answer.  First of all I hope he is okay and that nothing happened to him, that being said, I really think they should let us know what is going on and why he was a no show.  We scheduled the appointment specifically for them to look at Charlie’s shoes and inserts to see if they think that might be the problem.  If it is it needs to be fixed now so that he can get healed and be able to walk again.

Anyway, please pray for healing for the foot.  Fundraising, a kidney.

Blessings to all.

Charlie & Sherrie

What More?

6 May

Good Afternoon Everyone,

Did you ever feel like you just needed to do more? There are days that I really feel like I just am not doing enough in this search for a kidney for Charlie.  I try to find venues where I can share his information with others and also get the word out about organ donation and live donor programs. I like talking to people about it and I love sharing Charlie’s story.  His is an inspiring tale.  He has done so much in his life time, now he sits and only thinks about it all.  He can’t go do the white water rapids, he would love to go fishing, but has no one to take him and no where to go.  It’s hard.  He thinks about his grandchildren and tries to imagine what they look like. Not a day goes by where he doesn’t talk about his daughters and how he would love to be able to see them.  He recants stories of when they were little and the things they did.  He remembers a video tape that he has of them when they were little but that is it. He says it’s getting hard to remember what they look like and that is very hard for him.  He will never see the grandchildren, he has a memory of what the oldest looked like when she was little but that is it.   He also thinks about his days as a firefighter/paramedic.  He remembers the accidents he went to, the fires he was at.  When he has trouble with his feet at night it wakes him and he can’t go back to sleep and these are some of the things that run through his mind.  His ears perk right up when he hears the sirens outside, it’s in his blood and you can’t get rid of that. My heart breaks for him when he starts roaming through his mind and talking about all of these things. I suppose that is because there is nothing that I can do to fix it.  I can listen and I can try to tell him what things look like now but I know that’s not quite the same.

We have contacted the American Diabetes Association and they are interested in talking with him about joining with them as a volunteer who can speak to people who are diabetic, with an emphasis on those that are newly diagnosed.  He wants them to know it’s not the end of their lives, unless they make it that way.  He wants them to know that if they take care of themselves they can live long and productive lives.  He wants them to see what the disease can and has done to him so that they will take it seriously.  So this week I intend to contact the local office (that’s what the national office asked us to do) and see what we have to do to get this going.  He needs to share, he needs to get out with people.

So, right now I am asking for prayer for the following:  1. Charlie’s health.  2. Charlie’s kidney. 3. Finances.  4. Fundraising. 5. Public speaking.

We love each of you and appreciate all of the comments, encouraging words and most importantly the prayers.  Thanks for your support.

We are looking for a kidney – are you our HERO? Please pass on this URL and information to family and friends.  Someone out there has the kidney we are looking for and the only way we are going to find it is to get the word out to people that we are looking.  Charlie is registered with the Texas Transplant Institute at Methodist Specialty and Transplant Hospital in San Antonio, TX.  To contact them call the Live Donor Program and let them know that you are interested in being tested to donate a kidney for Charlie Shivley.  They will talk to you about testing and about coming in for an “interview”.  You can also do that over the phone.  There is no charge to the person donating the organ.  You won’t have to pay for testing, surgery, hospital stay it’s all paid for.  IF you live outside of San Antonio or Texas for that matter you can do the preliminary testing where you live.  At one point you would have to come here, and there is assistance for transportation if –there is a financial need.  If you are interested contact the Living Kidney Donor Clinic at Texas Transplant Institute (210)575-4483.

Blessings to all.

Charlie & Sherrie

Busy Day

4 May

Good Morning Everyone,

Well, here it is, Saturday again.  Seems like it was just Saturday a minute ago.  Where does the time go, sometimes it just breezes right by, days just seem to all blend together.  Last weekend we had a great time at the South Texas Gospel Music Association convention, this week we are going to do the Youth Yard Sale at the church.  I am doing a Donor Awareness table there, going to get the word out about living donations and also Charlie’s need for a kidney, maybe today will be the day that our mystery donor will hear about it and get tested??  Who knows.  I figure that the more people I tell just increases the odds, right?  I sure hope so.  In the meantime the word will get out to more people about organ donation and live donor programs.  Sometimes I just don’t feel that I am doing enough to look for the kidney.  I know we are doing all that we can do but still, there are days when I am just searching for more.

Charlie has dialysis today, hopefully he will have a good session. Then it will be home to rest.  Tomorrow he has a Deacon’s meeting and it will be the donut social, the first Sunday of the month is always so busy!!  It will be a good day.

Well, I need to go help Charlie get ready for dialysis.  Have to coat his access site with lidocane so that he isn’t in pain when they stick him with those needles!  Then we wrap his arm in saran wrap so it doesn’t all rub off on his shirt sleeve.  The things we have to do!

So my friends, thanks for hanging in with us as we journey down the “road to a kidney”.  Praying each of you has a blessed weekend.  Keep on praying for us please and keep those words of encouragement coming, we need them now more than ever.

Blessings to all.

Charlie & Sherrie

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