I do want to clarify, the hope in them was genuine, as was, and is, my gratitude for every single blessing along the way and my faith that God would see us through it. It wasn't the answer I wanted, but God knows more than I do, and I know without a doubt that He will always take care of us.
The Deat Updates
I realized I have readers out there who wanted to know "The rest of the story." If you choose to read these, you'll understand why I'm not kidding when I say "It's a LONG story."
These are the email updates I sent during Deat's illness. If you do decide to read these and have questions, it's okay to ask.
07/25/07
Jerry Update
Hello all,
Many of you are already aware of what has been happening in our family, for those of you who aren't, I apologize for telling you this way. Life has been pretty hectic here in the last week, but thankfully, we are starting into what I hope will be a normal routine for awhile.
To clarify: many of you know my husband as Jerry, but others of you know him as "Deat," a nickname I've called him since we met, so to spare any confusion: Deat/Jerry=same guy.
A brief recap: On Monday July 16, Deat has an appointment in Somerset for blood testing, etc. in preparation for a planned surgery on his eardrum. After he had returned from Somerset and left for work, Dr. Kavanaugh's office called me to say that the surgery was canceled as they had found indications of kidney problems. (BUN level, on average should be around 10, Deat's was 98, Creatinine (sp?) should be at max 1.3, Deat's was 4.8) Since our family doctor here in London was out of his office last week, the lady on the phone said Dr. Kavanaugh wanted to refer his to a Nephrology specialist in Somerset, and she would be calling me back with an appointment time. She called back a few minutes later and said it was for 9 am the next day.
I went with Deat to the appointment the next day to meet with Dr. Clifford Matthews. Dr. Matthews spent quite some time asking us about Deat's health history, and carefully explained to us that Deat was suffering from kidney insufficiency. Serious, but not life threatening, very treatable. He said he wanted to admit Deat to the hospital immediately in hopes that some intensive intravenous steroid therapy might "kick-start" his kidneys into functioning again.
He explained that if they only regained a small amount of function, that we could go ahead and start the process for a kidney transplant and hopefully avoid dialysis. Unfortunately, after a couple days and an ultrasound it was clear that his BUN and Creatinine levels were not improving, they were slowly rising, that dialysis was not only necessary, that he needed it immediately, and that he was going to need a kidney transplant. He had 3 rounds of dialysis while still in the hospital.
He finally was able to come home this past Monday. He went to his first dialysis at the local clinic here in London yesterday, and will go again tomorrow. His schedule with be Tuesdays, Thursdays and Saturdays from around 11:30-12:00 until 3:30 or 4:00. The referral has been sent to UK to start meeting with the transplant team to evaluate his needs and evaluate potential donors, but it can take up to 5 weeks to get in for the first appointment and 4 to 6 months (sometimes longer) to get to the actual transplant stage. Dr. Matthews wants him to be off work for the next 5 or 6 weeks to get settled into dialysis and be ready when the time comes for the initial meetings.
Let me reassure you all, there are many blessings to be found in all this, the first being that we learned of the problem in time to do something before he became CRITICALLY ill. We were also very blessed to have Dr. Matthews to diagnose and start his treatment, we could not have asked for a kinder, smarter or more dedicated doctor. He spent a great of time carefully explaining everything to us, he always let me or the nurses know when he would be back to explain more... I could go on and on about him. I also have to say that the staff caring for him at Lake Cumberland Hospital in Somerset was wonderful as well, very caring, professional and helpful.
Another blessing: Dr. Matthews explained that with the anti-rejection drugs available now, "perfect match" is not as important as it once was. Closer is better, but the field is wider. At this point, we have 10 people on both sides of the family "jockeying" to be the one to donate a kidney. (For those of you outside the family who have offered, if the first round of tests don't offer a strong match, we may call you in for round two!!)
And to me, the biggest blessing: when this is all over, my husband is finally going to FEEL BETTER. After learning more about the indicators of kidney insufficiency, (shortness of breath, elevated blood pressure, anemia) I realized that this has been going on for quite some time. Now we know what's going on, and we have a plan for what to do about it. For me that's a huge relief.
Finally, I also want to thank so many of you for offering so much love and support. For those have you who've said "if there's anything I can do..." be careful! I may take you up on it! Our families have been taking turns staying with us and helping out with the girls, but we are so thankful also for all the calls, e-mails and prayers.
While I'm on prayers, YES, pray for health and healing, but also that God would bring us strength, wisdom, and peace as we go through this, and that God would guide our steps. Prayer is SO powerful.
If you have questions, I haven't answered here, please feel free to call or e-mail me. If I don't answer right away, it may be that several are asking the same questions and I will answer them in one big e-mail to everyone. Most of all, DON'T WORRY. God will see us all through this, and will bring us out better on the other side.
Much love to all,
Kelly
07/31/07
Jerry Update
Hello all!
Had a bit of a rough day today. This morning and afternoon Deat was a bit "addled." He had a bit of a hard time getting his thoughts together to speak when we met with the Peritoneal Dialysis nurse and the dietitian to discuss options and treatment, and again later in the afternoon.
Sometimes, kidney disease can do this, especially when the person is still getting used to dialysis. Today was his first treatment since Saturday, and it was the longest period he had gone without a treatment since this all started, so some of this is normal.
After we got home from his treatment, Deat slept a bit, and was still a little confused when he awoke for supper but (Thankfully!) came back to more of his old self after a 1/2 hour or so. I was most pleased when he tore into his fried potatoes. He can't have them all the time because of watching his potassium, but they are his favorite, so we'll just have to watch it the rest of the week. (Yaaaay! his appetite is coming back!) I have to admit, for a bit we were a little scared, so just to be safe, we are going back to Dr. Matthews in the morning to rule out any other unforeseen complications. Will send an update after our visit.
Still, many blessings to report also:
I also had a call from Dr. Matthews' office this morning to let me know that all the information had been transferred to UK for the transplant referral. Melissa (Dr. Matthew's nurse and a wonderful person!) advised me to be the "squeaky wheel," to call a number she gave me EVERYDAY until they scheduled an appointment for us. Well, any of you who knows me well knows that I can flat SQUEAK! with the best of them. When I don't have SOMETHING to do to make things better, I get antsy, so this job is right up my alley.
NFIBer's will appreciate this one: Had a GM and special nom renew (with a 200 percent increase) this morning before noon! What a blessing to have two easy sales this morning and to have a job where I can schedule around, take care of my husband, and still make a decent income for the day!
Deat made it to church Sunday, (I was so proud of him) but it wore him out for the rest of the day. (note to Fr. Charles, shorter masses for awhile, okay? tee hee) Hopefully, next week a bit more of the tiredness will subside and he'll feel like getting out a bit more. For now, Deat's Mom (Vona), my Mom, and my sister (Jeannie) have been taking turns being here around the clock, with Deat's Dad (Granville) and Daddy stepping in some too. It's really been a Godsend. They all like to keep their hands busy, so our trees have been trimmed, brush cleared, the back porch has been power-washed, yard mowed, some flowerbeds cleared, kitchen chair seat covers redone, mirrors hung, the too-small baby clothes sorted and taken to Goodwill, and it goes on and on... Someday (just not yet) I'll make a tacky joke about how we're making out like bandits on this illness. (You're supposed to laugh there, needed to lighten this thing up a bit)
Another BIG blessing: first bill from the hospital arrived this morning, but it said that they fully expected Deat's insurance to pay ALL of it (after discounts, still a bit over $10,000.00) I was so relieved I nearly cried!
Finally, thank you, thank you thank you for all the calls, e-mails and prayers ya'll have been sending our way. We feel so blessed and so loved. We will keep watching for His guidance through this. Please feel free to call my cell, don't feel as though you'd be intruding or anything. Anyone who loves my husband has my love too!. As he starts feeling better, he'll appreciate the calls at home.
I hope this was a good update and finds all of you well.
Love to all,
Kelly
08/01/07
I Thank God for You All!
Hello all,
Tough day today. Lots of decisions to be made, chores to do in the coming days and weeks for Deat's health. To add to that, Deat's brother was hospitalized last night, and is currently in ICU. While I am a bit too tired to go into all of it, the prognosis is not good. Granville and Vona are such wonderful people, it made me question how much our Lord thought that they could take.
I sat down at my computer tonight feeling so disheartened and worried. Then the flood came... not of tears but of encouragement and reminders of the blessings we have in our friends and loved ones. God used you today to bring me back to the faith that will sustain us, right when I needed it. As I read the e-mails, I was also reminded of the blessings today in words of encouragement and advice from others of you in phone conversations and a very special visit throughout the day, today; reminded that God put you in our lives for a reason. It is truly a Great and Compassionate God that we serve, and I am so grateful to Him for you all.
Kelly
P. S. Please pray for Vona and Granville too. They need His peace now more than ever!
08/02/07
Quick Update!
Great news all!
I received a call this morning from Nancy Dawson, Donor Coordinator for the UK Transplant Team. The process to start screening potential donors has begun!
She took some of my preliminary health information over the phone and is mailing a more complete medical questionnaire with a self-addressed stamped envelope to return mail it. I asked her if she could send me additional packets as many of the family-members interested in being screened are here in London with us as much as they are at home! She said that anyone could fill out the questionnaire, but that unless she spoke to an individual personally, their request for screening would not be processed.
I was going to tell any of you to e-mail me if you wanted the phone number, but I decided to put this information in the broad e-mail to say this: being a donor is a very personal decision, one that really requires much thought, prayer, and discussion with loved ones. I do not want anyone to call just because they feel that they "should" or to simply show their love for us. I didn't want to discourage anyone who was interested, so If everyone has the information, we will not know whether any individual made a call or not. If you have prayed on this and want to be included, just leave her a message with your contact information and she will call back. Her contact information is:
Nancy Dawson
Donor Coordinator
859-323-5737
Much love to all,
Kelly
08/04/07
Weekend Update
Gotta be quick here, at Lex. Public Library with 4 minutes left.
The brief version: Deat is in the hospital at UK. We had a Cat scan Wed., Deat had a MILD stroke. The blessing is we're at UK Hospital with a TEAM of specialists checking into EVERYTHING. Will update further when I can.
Call my cell if you want, I get SO bored up here!
Kelly
08/05/07
080507 Deat Update
Hello all!
Deat is out of the hospital, I am writing to you from my parents' house in Paris KY, will be headed back to London tomorrow. Much to tell you, but sticking to the most important tonight. I re-read yesterday's e-mail and realized it may have scared some of you.
Deat is FINE. The neurologist described the damage from the stroke as "subtle," meaning basically, if you aren't a neurologist performing physical and speech tests, you'd probably never guess that he's had one.
His spirits are good, and he's feeling better all the time. Still tons to do, tons of medicine and tons of appointments, but praise God the future looks bright! Will update more fully soon!
Kelly
08/07/08
No Subject
Hello all!
We're home from the hospital and Deat is feeling better than ever! Wanted to address a couple questions sent to me for the group. (If these are getting too long and detailed for anyone, let me know, I do go on a bit)
Kelly,I know you are bombarded with questions, but did the stroke occur in the last few days or something before??....Still Praying for you all,Jim
Good question. I want people to ask questions so I know what to include in the next update. We're not sure when it happened. Deat is a rather quiet reserved person anyway, so when he was only giving me yes/no answers or nodding, I thought it was just his being upset over all that's happened. It was Tuesday (the 31st) that I noticed him trying to talk and having a hard time, so I called Dr. Matthews, Dr. Matthews seemed to think along the same lines as I did, plus sometimes patients who are new to dialysis go through a period where they have difficulty organizing their thoughts. To be safe, we had an appointment with him and he ordered a CAT scan for Wednesday.
When his nurse called me Thursday with the diagnosis, Deat's parents, my sister Jeannie (she was also staying with us to help out) and I discussed our options and decided that UK was the best place for him. We packed all his things while he was in dialysis so when I picked him up we could just take him on. Since my parents live in the next town over from Lexington, Jeannie picked the girls up from childcare and followed me to UK where my parents were waiting. Mom and Dad took the girls home with them while Jeannie stayed with me for moral support.
The funny part was, when I picked Deat up I drove to the gas station to fill up and explained to him that he had had a stroke, and that I was taking him straight to UK hospital, as soon as I paid for the gas. The only thing he said was, "Will you get me a lemonade while you're in there?"
Funny how God gives us humor even in the scariest times, huh?
In a message dated 08/07/07 06:51:17 Eastern Daylight Time, janetcdeaton@yahoo.com writes:
Hi Kelly,
I'm so glad Jerry is not too effected by the light stroke.
I HOPE that you are doing well. Care givers often get the short end of the stick and I hope you are seeing to it that you get what you need during this stressful time. What do you need? Can I help?
thanks,
Janet
I am FINE! The Lord has truly walked with me and held my hand every step of the way. (I don't expect He plans to let go anytime soon!) Every time I've started to get down, He's put SOMETHING in front of me to bring my spirits right back up, and blessed me with the ability to see each time that it was His Love that brought me each of those gifts. He has truly been amazing. I wish I could give everyone the gifts that come with faith, life is so much easier!
Some examples: Family!. Vona, Granville, Momma, Daddy, and my sister Jeannie have been taking turns staying with us, so all the bases between errands and the girls have been covered. Some of the times it's been simple things like a stranger coming up and praying with me at the hospital.. more than once, and out of nowhere! Sometimes, it's been things like the e-mails from different people... It goes on and on. Overall, it has to be all the prayers from every direction. I don't know if I could begin to count all the church prayer lists we're on, not to mention the prayers from those who know and love us.
Thank you so much for your kind offer, as you can see, the main thing I ask everyone (as before) is to keep the prayers coming, especially for strength and wisdom. Obviously, those prayers are being heard and answered! (Ask and you shall receive, seek and ye shall find..) I want everyone to know that His Glory truly shines!
Finally, believe it or not, this whole experience has been a blessing. Before we discovered the problem, I was watching my husband get more and more ill, and felt powerless to do anything. He was getting more and more fatigued, his BP was going haywire, he started coughing a lot (lack of kidney function was affecting his lungs) and frankly, since he didn't feel good, he was testy all the time. I brought up doctor visits several times, and it only caused more friction between us. I believe Deat was struggling with trying to decide whether he was afraid of what was happening to him, or perhaps even more afraid to FIND OUT.
Now we know what is wrong, we're treating it, and he's feeling stronger everyday. He's less averse to doctors and following the prescribed course of treatment. He feels better, I'm seeing more and more of the kind, fun-loving, humorous Deat everyday. I'm finally getting my husband, the man I married, BACK! PRAISE GOD!
Again, if anyone is feeling a bit overwhelmed my all these e-mails, please let me know, I won't be offended in the least. By the same token, if you know someone I've left out, let me know so I can add them to the list.
Much love and thankfulness to all,
Kelly
08/08/07
Donor Evaluation
Hello everyone!
I hope all my e-mails aren't aggravating anyone, so here's the disclaimer for this one: This e-mail doesn't really have an update, it's just to provide information for anyone who may have called about donating or is thinking of doing so.
I still had not received my follow-up Medical Questionnaire for Kidney Donor Evaluation today, so I called Mike Pelphrey and he explained that although each questionnaire is mailed within 24 hours of speaking to a donor candidate, they had discovered that several of their mailings had taken up to 2 1/2 weeks to arrive.
So, I asked Mike if he could e-mail the form to me and I've attached it to this e-mail. You can either print it, and fill it out to mail, or fill it out at your computer and e-mail it back to Mike.
Nancy Dawson is in her office today, but will be out for the next 2 weeks, so there's not a huge hurry if you choose to wait for the form to arrive in the mail.
If you want to go ahead use this form, to mail it, the address is;
Nancy Dawson
Kidney Transplant Donor Coordinator
800 Rose St. Room C419
Lexington KY 40536
If you want to e-mail the form, Mike's e-mail address is:
mpelf2@email.uky.edu
If you have questions, or for those of you still thinking about calling, you can call Mike at 859-323-1715 and Mike can advise you from there. As I mentioned before, if you send in this form but haven't personally spoken to Nancy Dawson, it will not be processed.
If you choose to e-mail, you may want to change the name of the file before you send it. You DO NOT need to identify Jerry in any way. For confidentiality reasons it's better if you don't. Your name and social-security number on the form is all that's needed to identify that it pertains to Deat.
Thanks to all of you for your love and support!
Kelly
08/11/07
Deat Update 081107
Hello all!
Sorry I haven't written in awhile! Deat is doing well, we're just adjusting to the changes in our lives. P.D. started school (1st grade) Wednesday, but there was some mix-up with the school buses, all straightened up now. I hope to return to work next week. I think it will be nice to have some face-to-face conversations with people who are neither a. related to us or b. wearing scrubs! (just kidding, very thankful for both!)
Also, some big blessings this week:
We were blessed to have Wilma come and pray with us. Deat says if anyone gets to heaven, she will.
I was feeling down Thursday night, (I was paying bills!) and I pulled out the one for Deat's CAT scan, then realized, I had MIS-READ it the day before! I thought we were going to have to pay $408 and realized that the bill said that they WROTE OFF $408 after insurance, that we owed NOTHING! Also, learned that I was a bit ahead on the car insurance, so I had to pay this month but won't have to pay next month. I think God holds back these surprises for me for when I need them!
I spoke with the insurance agent for Laurel County Detention Center (Deat's work) and learned that HE HAS NO DEDUCTIBLE (i.e. 100% coverage!) as long as we are in-network, and almost every health-care provider in the state is in-network! What a load off our minds! (Praise God and the Laurel County Fiscal Court!)
THEN on Friday I talked with Todd at the LCDC and learned that he and some of our dear friends there are planning a "Corn Hole Tournament" to help us with our child-care and gas expenses for the trips to Lexington. I have to say I nearly bawled. We are so so blessed with love here. When I have dates and times I'll let you all know. THANK YOU ALL SO MUCH!
Answers to some questions:
1. Deat's brother is recovering! He's still in the hospital but has been moved from ICU to the regular floor.
2. I realize now that I didn't explain the situation fully. Some of you know, but many didn't, that Deat has Lupus. Lupus (the very very simplified, short version) is an auto-immune disorder. During a flare-up, your immune system starts to see one or more of your regular organs as a disease that it needs to attack.
It was first diagnosed when he was 17. The initial flare-up affected his blood in that it clots far too easily, so he's been taking a blood thinner for about 15 years. The doctors believe that his kidney problems come from another flare-up. (15 year remission, that's something to be thankful for in itself!)
Anyway, his stroke (reminder, very mild!) was not a "traditional" stroke in that there was no blood clot. The Lupus was causing his blood vessels to contract. Yes, one teeny part of his brain was damaged, but most of the confusion was because the blood flow was down a bit. Yes, he makes sense when you talk to him, so go ahead and start calling, I'll be going back to work this week, I'm sure he'd love to hear from you.
3. Kidney transplant is quite a process and it will be some time before we actually go for the transplant. We have a donor coordinator (Nancy, I mentioned before) who is taking calls from those who want to donate. She does a brief phone interview, then sends a bit more in-depth medical questionnaire to those who called. From those questionnaires, she and the doctors will select the best 3 candidates for medical testing. If none of those 3 come close enough, they move on the next 3, until a good strong match is found.
On the other side, we have a recipient coordinator, who makes sure that Deat is a good candidate to receive a transplant. He will undergo several tests as well, (heart, lungs, etc.) to make sure his body can handle it. Some examples: a. Deat has to go to the dentist to make sure there's he as no infection in his mouth (we'll be there soon Dr. Petrie!), b. He had to have an echo-cardiogram (sp?) to make sure his heart was in good shape... and many more tests. We will begin the process of scheduling those tests at UK next week.
4. We have to make sure his Lupus is back in remission so a new flare won't hurt the kidney. The good news is SOMETIMES when a Lupus flare burns out the kidneys, it also burns out the Lupus, so it usually doesn't attack the kidneys again. The chance is still there that he may need another kidney later... but for now we will pray that whichever kidney he gets will take and will last a long time.
5. The girls are adjusting well, and I am a bit stressed lately, but overall okay so far. I've been very busy playing advocate, but I'm not a good at "the waiting game" so pray for me for PATIENCE please, not to mention that everybody and their brother will want to join NFIB (ha ha!) Also, as many of you have reminded me, God may see fit to heal Deat completely, so it's okay to pray for that, too.
6. Again, don't be afraid to ask questions. If you're thinking them, I may need to update the others too!
Finally, THANK YOU ALL for your love and support. God has used so many of you to hold us up, without you I don't know where we'd be.
Much love,
Kelly
08/23/07
Deat Update 082307
Hello Family and Friends!
Neat stuff going on over here. Lots to do in coming days....
Mon 8/27 AT UK Our first face-to-face meeting with the UK Transplant Team! We'll be in testing all morning, then we have to go meet with Anesthesia at UK for an upcoming lesser surgery
Fri 8/31 AT UK Meeting with Dr. Rachel Chase, she is Deat's Rhuematologist. (The Lupus Doctor). She is wonderful. Anytime we've called with a question she's gotten back to us in the same day and is also consulting a great deal with Dr Lohe, Deat's Nephrologist here in London, (The Kidney Doctor) about medications, etc.
Wed 9/5 AT UK Fistula Surgery with Dr. Sorial (Vascular Surgeon) A fistula is a procedure where the doctors "join" a vein and an artery in Deat's wrist to make a better access-site for dialysis. Right now, Deat has a catheter attached through the wall of his chest. (tubes sticking out) While it works well, it has much higher chance for infection than a fistula site would. After surgery, it takes 8-12 weeks for the fistula to heal, but afterward, they will be able to "stick" the fistula site for dialysis rather than have open tubes.
Thu 9/6 AT Marymount Hosptial in London Kidney Biopsy. The biopsy will provide better information for Dr. Lohe and Dr. Chase as to what "type" of Lupus Deat has, and how it attacked his kidneys. This will help them chart the best course of treatment and medications) to get the Lupus under control and help get Deat's body ready for transplant.
I have to say, I became very spoiled to Dr. Matthews easy accessibility and his "sit and chat" style. Dr. Lohe is much busier (he has offices in 4 towns) and has a much more terse and direct style, but he has proved himself to be a very sharp and dedicated doctor in his own right. Dr. Chase told me she was very impressed with Dr. Lohe's knowledge of Lupus and input, and with how dedicated he is to giving Deat the best treatment. He took some getting used to, but I highly respect him.
Sat, 9/15 or 9/22 Location TBA Cornhole Tournament! This is going to be a lot of fun! Thank you, thank you to Jack, Wilma, Todd, Tammy, Phillip Janet, Frank, Roger, (please forgive me, there are some names I don't know well) and everyone at the LCDC for volunteering your time and energy to this, your prayers, your visits and encouragement, and for SO MANY other things you all have done to help us. I didn't realize how much love could be flowing through a jail! (I guess it's another example of how God is EVERYWHERE) Rest assured Deat and I send the love back to you!
AND (drum roll please)
Mon 9/17 LCDC Deat comes back to work! (Barring and unforeseen circumstance of course) Let me tell you, he is chomping at the bit! He would rather come back sooner, but with the 2 surgeries in the first week of September, we decided to give him one more week at home to make sure he's good and strong to come back. WARNING LCDC employees! My 3-pound box of rubber bands is missing... get ready!
I have more blessings to share, but I will save them for tomorrow, this is getting really long!
Thanks to everyone for the prayers and support...
Much love,
Kelly
08/28/07
Deat Update 082807
Hello all!
Who knew little ole kidneys could be so much work?
We met with the transplant team at UK on Monday, his surgeon will be Dr. Johnston. (Of course he's good, he does transplants!) He said that since we have several people willing to be tested for live donation, it's conceivable that it could happen in a couple months! WHOA! However, it will all depend on getting the Lupus back into remission or "burned out." Get your prayer fires going, please!
He also told me that getting test results back and forth between UK and local labs can be a bit of a hassle, so the best route is to get the results of every test and fax them or hand deliver them myself, both directions. Did you know that under HIPPA regulations, while doctors and labs may mail or fax test results, they can't e-mail them? Seems strange to me, but when did ANYTHING the government does make sense?
As I mentioned last time, next week will be REALLY busy, with surgeries on both the 5th and 6th. I wouldn't be truthful if I said that I'm not a wee bit stressed by it. If you get a chance, remind me that the Lord will take care of us and pray for Him to calm me down a bit. I'm afraid I'm slipping into focusing on all the things I have to get done, and not enough on what GOD CAN DO. (Hmm, just typing that, I feel better already!)
Finally, I just wanted to share a really neat thing that happened to me last week. You may remember a story (it made national news) a couple of years ago about a guy they let out of jail so he could donate a kidney to his son, then when they freed him he just took off? I met the boy in the story. His name is Destin Perkins (if you don't know the story, type his name into Google or Ask Jeeves).
Anyway, it was totally by accident. I was out doing my job in Jamestown Ky, and it turned out that he dates the niece of the business-owner I was meeting with and happened to come in. He just turned 18 and is the neatest kid. He did get a transplant from a donor in California a year ago, and he looks great. The really sweet thing is, after all this kid has been through, he kept offering to meet with Deat and tell him what is like to go through transplant. He's started college, hoping to major in either Law Enforcement or Corrections. He said his inspiration was that he wanted to keep guys like his dad off the streets! We have been e-mailing back and forth, I hope I can get them together the week after all the surgeries.
Hope this finds all of you well, and with God's help, by the end of this year you'll be finding all of us well, too!
Much love,
Kelly
09/06/07
Deat Update 090607
Hello Dear Friends and Family,
1. Hope this finds you all well. We had a bit of a trying time this past week but with a little faith and a lot of help we came through it! Deat came down with a cold late last week. We mentioned it to Dr. Chase on our Friday visit, and she left us instructions that if Deat's temp got above 101, to come to the ER and have her paged.
On Sunday, you guessed it, (trying to be brave and have a "by-ourselves" weekend) we had to make the trip to UK. I learned that I can take a shower and pack suitcases for all of us in less than an hour. We called Mom and Dad and they met us at UK to take the girls. I was concerned that B.B. would fuss about leaving "Momma and Daddy" but when P.D. started heading out with Pap, that was all she needed to see. Some girls are Momma's Babies, some Daddy's Girls, B.B. is definitely "Sissy's Girl."
Luckily, after the token YOU HAVE TO BE THERE AT LEAST 7 HOURS... (it's not written down anywhere, but in my experience, it IS a unbreakable rule) we got a diagnosis (the beginnings of pneumonia, he is feeling MUCH BETTER) and didn't have to be admitted! We got a prescription for some high-powered antibiotics and we got to go out to eat and headed for Mom & Dad's for the night, which was really nice. Since it was a holiday weekend, all my siblings showed up (including the one I never get to see) and we had a cookout and really got to enjoy our visit. P.D. had a blast with her cousins, Abigail got plenty of chances to show off all the words she's learning, so it was a good trip after all.
Unfortunately, because of the infection, Dr. Sorial (UK Fistula Doc) canceled the Fistula placement that had been scheduled for Wednesday. They will call Monday to reschedule. Dr. Lohe did perform the Kidney biopsy today (in Barbourville, he wanted a certain tech to work with him) Dr. Lohe is VERY PICKY about everything, and I like that trait. The biopsy went very well. Deat came through with flying colors and a decent attitude. Dr. Lohe said by tomorrow night he shouldn't even be sore.
I'm learning that Deat and I both tend to deal with nervous situations with humor. We were cracking ourselves up all the way to the hospital. I plan to take a tape recorder when we finally get to go for the transplant, we may need to take this show on the road, or at least sell comedy tapes. As funny as we thought we were today, we'll be a RIOT for that trip.
ON a serous note, I believe oftentimes God puts us in struggles so we can take what we've learned from them and help others. With that in mind, I have another important lesson I've learned from this I'd really like to share in case it can help any of you later: DON'T DEPEND on doctors, nurses or medical facilities keep track of and to share information. HUMAN ERROR is as big an enemy as any disease. SPEAK UP if you have questions or concerns, and keep your docs informed! If I have to make a decision, I want all the facts, and it's no different for a doctor. One fact can change the diagnosis or the course of treatment completely.
So, I've started requesting and keeping copies of every bit of lab work results I can get my hands on, and I keep a database for all the medicines that Deat is on where I can record the changes and print out new lists with no trouble (some meds get discontinued for awhile, some are new or temporary). I started doing this stuff for myself (Just another way to feel I'm DOING SOMETHING to have a little control) but I got to thinking: if a doc is going to be making decisions about the most important thing in my life, I want give him or her every fact he or she needs to make the best ones!
Example 1: When we went to UK, and they asked us to list his medications, all I had to do was reach into my folder and pull out my list, no having to try to remember during a stressful time. This kept the doctor from prescribing a medication that would not have been appropriate. When the doctor came in with his ER lab work, he said "Boy, I wish I knew a little more history on how this has been running..." No problem, I had all the labs from the past month right there with me. The doc said he wished all patients came that prepared.
Example 2: Even though Deat had been seen at UK, I knew I couldn't assume that Dr. Sorial had all the information from over the weekend. When the nurse called to confirm the time on the fistula surgery, I asked if Dr. Sorial had seen the labs from the weekend (he hadn't). He reviewed them and called back to cancel. (no taking chances with active infection) He may have found those labs beforehand If we hadn't spoken up, but why leave that to chance?
Example 3: It may not have made a difference today, but the med list that Dr. Lohe's Barbourville office sent to the Operating Room today was incorrect. I had left an updated med list at the Clinic here in London on Thursday, but it hadn't been send to the Barbourville office yet. Also, while the labs we had taken on Tuesday WERE there, the nurse said the copy I had was clearer.
This isn't incompetence, this is the way things are. Medical people are HUMAN and anytime you've got humans, you'll find errors. UK even has a poster in the ER encouraging patients to intervene if something doesn't seem right. It makes a difference!
Finally some GOOD News, some "HOW SWEET" news, and some FUN news. We have another meeting with the UK Transplant team for more tests on Wednesday, September 19. (One step closer, YAAAAY!) The other day we got a card from Providence Baptist Church here in London letting us know they are praying for us. It was full of slips of paper from each family praying at the Wednesday night service,and with little notes of encouragement. I'll treasure those. AND! the "CORN HOLE TOURNAMENT" has been scheduled for Saturday, September 22 at the Laurel County Fire Department (out 4th Street, near Bingo Zone). As I have more details about the tournament, I'll let you all know.
Thank you, thank you all for your love, support and encouragement. Please, don't be afraid to e-mail me with questions, and don't be afraid that "they have too much going on" and let that keep you from calling. If we're busy at that moment, we'll tell you, but even if we are busy, just knowing you were thinking of us helps! Looking forward to hearing from you!
Much Love,
Kelly
P.S. Next time you say a prayer for Deat (thanks for those!) please include a little extra prayer for his cousins, Jared and Joey. They were in a car accident over the weekend. They will recover, but they'll have several challenges getting there. Their Mom and Dad (Jayne and Greg) have been very good to us in our struggle. Your prayers have done wonders helping us meet our challenges, so please join us in praying for theirs
09/17/07
Deat Update 091707
Dear Friends, Family, In-laws and Outlaws....
Sorry I have taken so long to write another update. Things here are busy as always. I told the "Patient Coordinator" (Rhonda) for the UK Transplant Team today that Deat actually has 2 coordinators: the one who schedules the meetings and tests (her) and the one who schedules everything else... ya'll know who that one is.
On Tuesday of last week we had another stay at UK. Dr. Chase (Lupus Doc) called with concerns that his white blood cell count was getting too low and said after consulting with Dr. Lohe (Kidney Doc) they wanted him to come to UK and test for something called Heparin Induced Thrombosis. Basically, they were afraid that Deat was "allergic" to a particular type of blood thinner, and wanted to admit him for testing but needed a 24 hour drip of a different blood thinner to make sure he wouldn't clot in the meantime.
I told her I didn't want to commit to coming without Deat's agreement, (he was in dialysis at the time she called) but that I knew we'd be there. I bribed Deat to go by promising him a trip to Penn Station Subs on Nicholasville Rd. before check-in. (He still would have gone, but it made him feel better about it) I don't know how I'll get him back up there if they ever put a Penn Station here in London. The tests came back negative, so we got to go home after only one day. (Yaaay!)
We had one blood pressure scare on Thursday (had to get the meds upped) and honestly, the rest of the week is blur. The days run together. I know Vona (Deat's Mom) and I got all my cabinets re-organized, all B.B.'s too-small stuff taken to Good Will, and that's about all I know. Oh, we also got my kitchen decorated, and for that I am tickled.
The really good news is that Deat went back to work today and made it all day long.(Yaaay!) It wore him out, but he looked happier when he came home than I've seen him since this started.
I go back to work tomorrow (wish me luck, I am WAY rusty). We have a trip to UK for transplant tests this Wednesday (the 19th) and another trip for the Fistula surgery we had to reschedule the next Wednesday (the 28th) Hopefully, Deat's Lupus will go into remission soon and then I can be telling you more about TRANSPLANT PROGRESS!
Oh, and don't forget the CORNHOLE TOURNAMENT on Saturday (the 22nd, 10 am, at the fire department out 4th St) LET'S FINALLY have some FUN!
I just want to say thank you again to everyone for your love, your prayers and support. God has been so good to us throughout this trial, and I pray for each of you each night as well.
Finally, if you have a few extra prayers in you, please add one for Lindsey (a dear friend's daughter who is also enduring some Lupus struggles of her own),
for a not-to-be named tough guy (he wouldn't want me to tell) who's mother has been hospitalized,
and for Lori, who unexpectedly lost her 23 year old son (the worst loss I can imagine) on Sunday.
Please ask God to hold them up as He's held us up... I only wish I could do for these dear friends as they have done for us.
Love to all,
Kelly
P.S. I searched the net for a kidney transplant joke and couldn't find one, so this one will have to do...
A new arrival, about to enter hospital, saw two white coated doctors searching through the flower beds.
"Excuse me," he said, "have you lost something?"
"No," replied one of the doctors. "We're doing a heart transplant for an income-tax inspector and want to find a suitable stone.”
09/26/07
Deat update 092607
Dear Everybody!
Lots of good things happening here!
We were getting concerned about running out of Deat's Family Medical Leave time, but luckily, a new girl started dialysis at our clinic on the morning (6am - 10am) shift on the Tues. Thurs. Sat. schedule, and she wanted to be on afternoons, so Deat was able to trade. For us, that means that in the weeks we wont have to go to Lexington, Deat will be able to get enough hours to be full-time and we hopefully won't use up all his FMLA too quickly. Once again, we (all, our family and all of you) prayed for help and the Lord came through!
We had to be at UK at 5:30 am this morning for Deat's fistula surgery (gee, I hope I told you all what a fistula was in an earlier e-mail, if I didn't, somebody tell me and I'll explain.) We have a day full of appointments and tests on Friday, but hopefully things will be something like NORMAL for awhile. (well, hopefully, unless the tests say they can do the transplant REALLY soon!)
I learned a great lesson today: if you need to go from London KY, to UK in Lexington KY, leave at 4 in the morning. The only things on I-75 at that hour are semis, and there aren't many of those, plus getting across Lexington to UK is a snap! A trip that usually takes about an hour and 45 minutes is cut down to about 1:20!
I will admit, yesterday I was anxious all day... but Deat came through with flying colors. He didn't even have to be put to sleep, so by noon we were leaving UK. Plus as of right now, he feels well enough to go back to work tomorrow after dialysis. Needless to say, he is very pleased!
I have to digress a bit here and brag, especially since she doesn't get these updates: my little sister Jeannie is AWESOME! She got up and met me at UK this morning (after having to backtrack to get around street construction) and stayed with me the whole time... not to mention being with me when we had to take Deat to UK for the stroke, staying here with us here in London as much as she can to help out...(did I also mention my awesome brother-in-law, Curt, who never complained?).
And while I'm telling about awesome things, she was here all day Saturday to help during another REALLY awesome event: the CORNHOLE TOURNAMENT! She even jumped behind the counter and helped sweep at the end.
If you couldn't go, you would NOT BELIEVE all the trouble everyone went to for us. When I walked in and saw all the teams practicing and how hard everyone was working setting up chairs, tables and the food concessions, I just cried. I am not allowed to say who coordinated the whole thing, but he (and everyone really) worked his/their tails off making sure everything went smoothly.
Besides the games and concessions, Little Miss Kentucky Presley Morgan came and sang several songs for the crowd. She is a charming young lady who also devotes time to singing at nursing homes. Her mother was also a very sweet lady, and she asked me to include her on the updates group. Unfortunately, I lost her name and e-mail address, so I can't send this to her. If any of you know her, please tell her again how much we appreciated Presley's singing.
Thank you thank you thank you to EVERYONE who helped, played, and stopped by. The money you raised will help our family tremendously, but it's so much more than that. (How often do you get to see that much love directed at you and your family?) While Deat only got to stay for a little while, (he was still on the old dialysis schedule) I don't believe I've seen him that happy since this whole challenge started. The love in that fire house was just overwhelming. We are truly blessed with our friends at the LCDC and here in London in general. God Bless you all.
(Sidenote: The girls had a BALL. B.B. hammed it up and made buddies with Jack, (the jailer here in Laurel County) whom she has now dubbed "Papaw 2!")
Finally, thanks to EVERYONE reading this for being people who have cared and prayed for us. Your prayers do wonders. We feel so blessed and grateful to know each and every one of you. I'll update you again to let you know how Deat's stress test goes on Friday, and then MAYBE we can all go back to our routines for awhile... but as new things develop I'll keep ya'll posted!
Much love,
Kelly
01/02/08
Deat Update 010208
Hello Dear Friends and Family,
A belated Merry Christmas and Happy New Year to all of you! It's ABOUT TIME I sent another update, huh?
I kept telling myself, "well, we'll just get through THIS thing, then I'll update... and then we'd get some open-ended answer, and I'd put it off again... Plus, I'll admit, I've been kinda frustrated and didn't want to send something gloomy.
After 3 more tries, Deat finally had fistula-placement surgery November 16. Wait a minute, since it's been so long since an update, a refresher course: the fistula surgery joined an artery and a vein in his right arm. Once healed,(about 8 weeks) they can remove the chest-catheter they've been using for dialysis, and instead of hooking him up through the catheter, they can stick the fistula. (It reduces the risk of infection to use a fistula.)
Since Deat is a southpaw, they put it in his right arm because that is the side he uses the least. Par for the course, we had a little hitch: Deat's arm swelled up and his hand started turning blue! SO, after a couple more trips to UK, Dr. Sorial said that Deat's current catheter (also on the right side) was blocking the main vein that sends blood back out of Deat's arm, basically causing a blood traffic jam! Deat had surgery Friday, December 21 to move the catheter to his left side, then we have another follow-up with Dr. Sorial on Monday (Jan 7, Happy Birthday Jeannie!)
The good part was we got to take B.B. and P.D. and spend a couple of nights (Thursday and Friday) with my family (he had to be at UK at 5:30 am that morning). Then on Saturday, with Deat, the girls, and I in our car, and my parents in theirs, we all headed to Jackson to have our Christmas with Vona and Granville (my in-laws for those of you new to the update list) where we had the most wonderful time. (Have I mentioned before that I have the greatest parents and in-laws anywhere?) Since I had admired hers, one of Mom's presents to me was a Swiffer Sweeper... reckon she's throwing out any hints?
We had a very nice Christmas, with one more little hitch. On Christmas Eve, I couldn't find the girls' stockings, so I was running all around the house when I met my own Achilles' Heel. It seems when B.B. (age 2 now!) was "putting away" her toys earlier in the day, she decided that underneath a rug at the bottom of the stairs looked like as good a place as any for one of them. I hit that toy at full-tilt, and my left foot went one way while I went the other. I was so afraid that Santa would think that we weren't home, I was too scared to leave!
I finally went to the ER the next afternoon, (Christmas) where they put me in a brace and referred me to a specialist. The specialist (ha ha! I know all of Deat's doc's by name, rank and serial number and my doc's name escapes me!) has put me in an "air cast" for what he believes is a slightly torn ligament. As long as I wear the cast, it barely hurts, but if I try to walk very much without it, my foot gets pretty sore. I go back for my follow-up on the 17th. Ya know, I've always preferred to drive a standard, but trying to clutch with this thing on my foot makes me appreciate an automatic more by the day!
On to more important news: the most important goal of the last six months, Kidney Transplant!
The good news is Deat has completed all the tests to confirm that he is a good candidate for transplant. However, we need one more tiny thing before the transplant team will start testing donor candidates: we still need Dr. Chase (the Rhuematologist/Lupus Doc) to say REMISSION. At our December 7 appointment, she said she can't say remission until Deat is weaned off his Prednisone, and that we have to wean him very slowly or risk another flare-up. Barring any unforeseen complications (and nothing surprises me at this point) the tentative schedule went/goes: at that meeting he went from 60 mg a day to 40. On the 7th of this month he'll go to 30, then on the 7th of next month to 20, 2 weeks later to 15, then we go see Dr. Chase again.
A dear friend of mine (Buffy) and I often talk about our walks with the Lord, and she said something to me I am now completely advocating: NEVER pray for patience. When you pray for patience, God gives you the trials in your life that will teach you patience. I am going to be the most patient chick around when this is all over, so I'm not EVER asking God to teach me patience again! (that was supposed to make you laugh... I worry about my comedic timing these days)
The girls are doing well, P.D. is reading up a storm and doing very well in first grade. The biggest challenge (besides patience) right now is that B.B. is well into the throes of the terrible twos. When Deat came in the other day and asked me how she had behaved, I said "well, she's been meaner than a little stripey snake all day" to which B.B. answered "I NOT 'NAKE! I JUS' MEAN!" Truer words were never spoken. If you can get past the tantrums, she really is a lot of fun.
I still feel blessed. God is still right here with us, and all kidding aside, despite everything, we have so many more things to be thankful for than things to lament... I would not trade places with anyone. I just needed to remind myself of that for awhile!
Hope this finds all of you well! As always, please, if you have questions, don't be afraid to ask. We still appreciate your prayers and encouragement so much...
And remember: if you want to learn patience, don't pray and get the trials, just come baby-sit for me! (ha ha!)
Much love to all,
Kelly
01/07/08
Deat Update 010708
Hello all,
A quick note: Deat has a staph infection. They'll be doing a test tomorrow morning to make sure it hasn't attacked his heart, but the odds are good that it hasn't. If all goes well, he'll get out on Wednesday and will only need IV antibotics for 2 weeks... So, in all likelyhood, this is just another little bump in the road (in the grand scheme of things)
God has held our hands this far... I sure don't see Him letting go any time soon.
Why, oh why did I ever pray for patience? (smile)
Love,
Kelly
01/21/08
Deat Update 012108
Dear Friends and Family,
Whoo! That bump was a little bigger than I expected! No worries, (well not many) though, we'll get through this one too.
As I mentioned before Jerry had surgery 12/21/07 at UK Med. Center with Dr. Sorial to move his dialysis catheter from the right side of his chest to the left. It seemed to go off without a hitch.
On Friday, 01/04/08, Jerry complained that he wasn't feeling well and stayed home from work. We didn't make a doctor's appointment because he would be seeing the nurses while at dialysis the following morning, and sometimes Dr. Lohe (his nephrologist as well as general physician) stops in on Saturdays to make rounds. The dialysis nurses informed Dr. Lohe of Jerry's condition and drew blood for labs.
Sunday morning, around 6:30, (01/06/08) Jerry's new catheter completely FELL OUT. It was a bit of a scary event, to say the least, but I had to get tickled when P.D. was disappointed because I didn't wake her up to see the ambulance! ("Aw, Mom, that would have been so cool!") Our dear friend Marjorie came to the house at 7 to take care of the girls until Vona and Granville could get here from Jackson.
Labs from the (Marymount, now St. Joseph's London) ER found a blood infection and Deat was admitted to the hospital. Luckily, his fistula was finally ready for use, so there was no need to implant a new one to continue dialysis, and as Dr. Lohe said, finding the infection would have meant that the catheter would have need to be removed immediately... so it was kind of good that it fell out... (Hmmm, okay, yeah, at this point I decided that Dr. Lohe was as bad as I am in finding a bright side in EVERYTHING.)
Deat kept getting high fevers so what we thought might be a week-long became 12-day stay in the hospital. (Momma, Vona, and Granville came and stayed some to help during that time) As I mentioned in the last note, Deat had a test Tuesday, 01/08, and unfortunately, it revealed that the infection had moved to a valve of Jerry's heart. The infection in his heart was between 1 and 2 cm in size. The good news is that it wasn't over 2 cm. If it had been that large the heart doctor would have recommended a valve replacement. While that option remains on the table, if the treatment he's undergoing now is successful, it won't be needed. He was finally released to come home this past Friday, 01/18/08.
Deat now has an a grushong IV catheter in his neck, an infusion pump, and is receiving IV antibiotics 24/7. He'll need it for 30 days. (Drat it! He was looking foward to getting the fistula working so he could take a regular shower and not have to keep SOMETHING dry! Oh, well, that's minor) We are receiving help from home health as we make this adjustment, but soon he or I will be changing the IV bag. Luckily, the pump means we won't be tied to one of those hanging IV things all day, he has a "fanny pack" with the IV bag and the pump in it. We've got new drugs, stopped old drugs... it gets confusing! (A reminder, a database to keep track of meds is a girl's best friend!)
Partially because he's still pretty weak, partially because of the pump, and partially because different doctors say different things, we're not sure when/if he'll get back to work in the next 30 days. We're going to try to do our best get everythng that we'll need to do done without having family come stay with us, but we'll just have to see how things go.
Here is where faith comes in. You just have to KNOW (like we do) that God will take care of us. And thank you, thank you for all the prayers... I'm sure those prayers are the reason we're still sane! While you're praying, you might add that everybody I talk to will want to join NFIB or renew their NFIB membership in my territory in the next 30 days! (You can laugh at that, but it wouldn't hurt to pray for it just the same!) I'm getting I's dotted and T's crossed today but I hope to return to work tomorrow.
As for the girls, P.D. is just glad Daddy is home. She's been very, very helpful through everything. B.B. was a bit stand-offish at first, but since he's been hiding the tubes in his shirt, she's much better now. Now we have to undo all the spoiling Mama (me) did because it's been easier to go along with Little Miss Meanie than fight with her. Deat said this morning that God made her so beautiful when she's sleeping to help us forget what a booger she is when she's awake. (Don't forget, we will still rent her out for a small fee to teach you patience so you don't have to pray for it!)
Deat was pretty down in the last several days at the hospital, but his since he's been home his outlook is much improved. He'll be home most of the time, so I'm sure he'd welcome phone-calls and visits. After Momma's fussing at me last week (not to mention a serious talking-to from Daddy for stressing Momma out) over my messy house, I am becoming a much better homemaker! (Yep, I can find the blessings everywhere) So, the house should be clean enough for anyone who wants to come by!
Hope this finds all of you well, and I thank God for each of you!
Much love to you all,
Kelly
02/22/08
Deat Update 022208
Hello all,
Sorry this one is short, but the latest is this: unfortunately, the infection DID damage his heart, Deat is in the hospital having tests to get ready for open-heart surgery in the coming week or so. His spirits are good, and God, prayers and family are holding me up well. Keep the prayer fires burning,
Feel free to call my cell, it won't bother me. If I am busy and can't talk, I just won't answer! I will update further as I can.
Kelly
02/24/08
Deat Update - Arrangements
For those of you who aren't already aware, let me apologize for telling you this way.
Deat passed away yesterday.
The visitation will be tomorrow, Monday February 25, from 6 until 9 pm
The funeral will be Tuesday, February 26, at 1 pm.
3/22/08
If you'd like to share of memory of Deat for our girls, his memorial website is: http://jerry-deaton.virtual-memorials.com/ Please go to the "Guest Book"page and share a memory. It will mean so much to the girls later to read from his friends what their Daddy was like.
3/22/08
If you'd like to share of memory of Deat for our girls, his memorial website is: http://jerry-deaton.virtual-memorials.com/ Please go to the "Guest Book"page and share a memory. It will mean so much to the girls later to read from his friends what their Daddy was like.
05/18/08
Just wanted to share this with you all
Dear Everyone,
I just wanted to share this with you all...
So many of you prayed and prayed for Deat, the girls and I throughout his illness. I want you all to know, your prayers WERE answered.
Yes, my husband is gone, but we prayed together that morning before he died, so I feel confident that he finally has the peace and JOY he so longed for in the final days when he was so sick. He's happy, well, and at peace.
Since that time, our Lord hasn't stopped blessing our little family. I could go on for pages and pages about the blessings God brought us before, during and after Deat's illness. (And someday, I will. The blessings are too many for me to even venture a guess right now, but one day I will start trying to put them all down. Please know that a huge part of those is just having people care enough TO PRAY for us.)
I just wanted to tell everyone for the record, those prayers DID work, they WERE heard, God has used them to be so good to us. The girls and I get stronger every day... and I know that's due in large part to your prayers. Thank you all.
