The Return

On Wednesday we returned to our safety net, the Duke post transplant group. Aaron is being monitored by many people but first & foremost are the nephrology group at Duke. Our main contact group however are the post transplant coordinators and they are wonderful. After 2 1/2 years of talking with Erynn (coordinator) on the phone we finally put a name & face together in clinic and she was even more caring & personable than on the phone if that is possible. To know that this group of transplant RN's is within contact 24/7 is a comforting thought. They encourage us to call about anything going on particularly since this is a new experience for both of us. We have nothing to gauge these symptoms with now having a new kidney & pancreas. Something may be totally normal and expected or it could be a life threatening problem or a risk of losing an organ.

Aaron is trying to do everything they ask him to do and even though he doesn't feel his best due to surgery he is really pushing himself some. He can't drive, can only pick up five pounds, must stay away from crowds, etc. so that limits him to home at this point. He has to like my driving & not be too grumpy about it. He's making great progress and has done well but Duke is particular about their patients & will monitor him very closely for a year or more. At that time it becomes less frequent but we still have that lifeline available.

Clinic went well this week although his Prograf levels were low (main anti-rejection med) and they have increased the amount he takes but they did reduce his prednisone (also anti-rejection) by one pill per day. His pill box absolutely looks like a small pharmacy but soooo worth it. We tease him that his two snacks per day are taking the pills morning & night.

We are also grateful for his caregivers at the VA who have been in contact this week and continue to care for him even from a distance. I think they are all excited for him to have improved health as they have seen him at the worst point of health problems. We give a special thanks to Kanni and Pam who are so reachable and never seem to think a question is too small to ask. They also try to make our lives easier. And thank you Kanni for checking on Aaron at Duke several times with your busy schedule. Also we thank our special VA doctors who have continued to follow Aaron's progress at Duke. All Aaron's doctors (Duke & VA) have been the epitome of caregivers with the emphasis on "care". A special thanks also to his surgeon, Dr. Collins, for the special "extra" care you provided. We cannot say enough about how you cared for us both. You will certainly have a special place in our hearts always. We now have labs scheduled in Hickory this week and of course wintry mix is in the forecast. Then we will return to Durham the following week so I can't wait to see the forecast for that week. Remind me next summer to not complain about the heat.

Until then....

Barbara

Ultimate Thanks

Throughout our health ventures we have tried to thank the many people who have been so kind and helped us in many ways. Today we want to thank those closest to us, those who have seen the worst and the best with us, our family. From the bottom of our hearts we thank each of the members of our family for all they have done. Many times Robert, Michael, Dana & Samantha were there to help when I could not handle the sugar lows or just needed advice on health problems. Thank God that He placed my two daughter-in-laws in health care fields. So many times Michael & Robert have come to my aid to either help with health issues or to help us with cutting wood and other things around the house. And the entire family has had to adjust our gatherings on numerous occasions and I know that was difficult at times. We also thank Christopher (Aaron's son in Kentucky) for all the calls & prayers. Even though he is far away we know he is always with us in thought and prayer. And we thank our wonderful grandchildren who have been real troopers all the way. I know they have had a real education in diabetes especially high & low sugar levels. I'm sure they were a little nervous at times but always hung in there with me. And even though Charlie didn't know it at the time, Aaron was in one hospital when he was born in another so I would travel from one to another - always showering in between. Rachel, Gracen & Emma have been so helpful to remind Aaron to check sugars (or at least ask me if he needed to do so) while Charlie, Mason and Sadie have just shown him their caring ways as they played with us. We heard from all of you almost daily during the hospital stay and loved it and you made us laugh. We love spending time with all of you and hope to get back to that soon. So to all of you from the youngest to the oldest: Mason, Sadie, Charlie, Emma, Gracen, Rachel, Christopher, Michael & Samantha, Robert & Dana - we love you all and pray for you daily. And we can't thank you enough but this is a stab at that thanks.

Love ya,

Grandma (Mom) and Aaron

A New Week

Here we are on Monday two weeks removed from that 5 hour snowy, icy trip to Durham for surgery. After a good trip home Friday and a Saturday that was not too bad, Sunday was not so good. Aaron is having more pain than he's had the entire time so he "finally" took a pain pill last night. Yes, he's quite hardheaded when it comes to taking medicine unless he just has to do it. He still has quite a bit of discomfort this morning and no, hasn't taken another pill. To be honest, with all the pills he's taking following transplant, I can't blame him. His pill regiment is like an extra snack morning and night. Hopefully he won't have too many months with this many pills but we know that some will be with him a lifetime. Thank the Lord research has discovered how the body rejects foreign organs and how to stop that rejection. We encourage all transplant patients to continue taking your medicine as prescribed after hearing that so many stop taking it & lose the organs after about ten years. You are worth the effort and have invested alot in this adventure. Thank you to all for the prayers, cards, visits & gifts. A special thanks to Kenny Mull who dropped by yesterday for a short visit and to Donna Wiles who has checked up on us so many times. We love you both. Today is filled with laundry & cleaning before returning to Durham. Pray for NO SNOW!!

Until later.....

Barbara

HOME

After receiving the ok from the transplant coordinator, we left Durham Friday morning for a long, tiring trip home. It seemed much longer than the 3 hours plus a grocery store stop that it included. We were so happy to be home & glad when Michael came by to visit as soon as we returned. We have missed everyone so much being in Durham but it was a necessary thing. We settled in with me doing laundry, cleaning, cooking (and yes, a birthday cake for Aaron finally). Aaron needed a nap and took no time in getting one while I met Emma at the bus stop. About 7pm Samantha, Emma & Mason came by for a little visit and cake. Emma & Mason looked like they had grown and we were all excited to see each other and catch up on the happenings. Thank you to everyone for the calls, texts, cards and especially for the prayers. Aaron's labs show he is doing well and his eating shows it too. He seems to be enjoying food after many years of struggling with little or no appetite due to kidney failure & diabetes.

We encourage a call before coming to visit during this first while and please delay your visit if there is any chance of passing a germ of any kind. His immune system is low due to the anti-rejection drugs & will be until they're able to get them to a lower level. They begin with massive doses & tweak them often. Also, we will be traveling back to Durham each week for awhile for a clinic appointment. We look forward to visitors whenever possible. Again, we give God the praise and glory for making this all possible and a huge thanks to the family of the donor for their gift to others in a devastating time in their lives. Please continue to pray for them and us that Aaron will have these organs a long time.

Until later.....

Barbara

Happy Birthday Aaron

I'm slightly late writing this due to busy days getting Aaron from the hospital to the hotel. Although they discharged him on his birthday (Jan. 18) our wonderful doctors continue to hold on to Aaron. His lab levels have to be checked & meds adjusted to be exactly what he needs at the time and this early post surgery time is sensitive. He saw the doctor in clinic yesterday which totally wiped him out. I don't think he even realized how weak he would be since all went so smoothly in the hospital. Today he returns to the clinic for more labs & they will let us know later today about returning home. We are quite ready to be back in Catawba County but also want things to be right being that far from Duke. Labs will be done at home & results sent to Duke immediately but we also return to Duke weekly during the first month as adjustments are made. The first year after a transplant is critical so they will monitor Aaron closely during that time reducing the visits after that. We talked to several people at clinic that had transplants in the fall & the excitement in each one was a tremendous boost for us. All had such great stories to tell with the gift they had received. It truely is a gift for all that are blessed with it. Many have asked us if we know anything about the donor. No, not at this time but may have the chance in the future. We will be able to write to them but as each family grieves in different ways it will be their choice to share information with us. We pray for that family during this difficult time and continue to thank God that they so unselfishly shared with other families. We ask that you also keep Marie Mull and family in your prayers at the loss of her son Corey who passed away this week in China. They truly need all our prayers and love.

Until later.....

Barbara

The "Plan"

Aaron has cabin fever bad and rightfully so. He has found how difficult it is to get any rest in a hospital and the better he feels, the more he is ready to leave the hospital. The plan at this point is for him to leave the hospital tomorrow but stay at the hotel a few days. He will see the doctors in the transplant clinic and then have labs drawn later in the week. Also during this time we are being educated in many areas. We have met with the pharmacist to learn about his meds and today met with the post transplant coordinator. These ladies are the first line of defense if anything goes wrong or if we simply have a question concerning his health. If they can't answer our questions, then they will talk with doctors who can answer them. And thank goodness they are available 24-7.

All of our health care providers have been wonderful and taken such good care of Aaron. One can easily tell that Duke holds their healthcare providers to very high standards. No wonder they are ranked 6th in the nation. God really provided when He brought us to Durham VA ten years ago to their nephrology department. That was our connection to the transplant here at Duke ten years later. How could we have ever known the future of Aaron's health issues and many times we were ready to throw in the crowd. We have alot ahead as all is not clear sailing but much is now behind us too. Thank you again for all the prayers, texts, cards, phone calls.

Until later....

Barbara

A Brighter Day

Today has been a progressive day with Aaron getting food (broth) for the first time since Monday evening. He has also been disconnected from some things although he's now getting 2 units of blood. The surgeon said he didn't lose much blood but needed a little boost, thus the "red" juice. Today we met with the pharmacist to begin learning his medicine regiment. That will definitely take some learning on our part. Tomorrow should be another step in the right direction with solid foods hopefully. That will make life so much easier. His creatine is 1.2 and got to that point very quickly after surgery. His sugar level has been 80-100 and absolutely no insulin. He is still pinching himself that they are checking glucose once per day as he would stick those fingers 4-5 times per day. We feel so very blessed to have even had this opportunity. Thanks to all again for all the prayers and phone calls. We especially thank our family for their caring & the many phone calls plus texts from them. And we also are grateful for our six grandchildren for their love and calls. Mostly we are grateful to the Lord and the family who donated their loved ones organs for this to be possible. We pray for comfort for them.

Until later...

Barbara

Bump In The Road

Aaron has done great since surgery with the exception of some serious nausea. Wednesday night & most of Thursday morning were spent with a container in his hand. And of course this was not a pretty sight or a wonderful feeling with abdominal surgery but goes with the territory. Dr. Collins is trying hard to get the nausea under control thus changing Aaron's pain meds plus trying all kinds of meds for the stomach. Late Thursday was an improvement and Aaron walked another lap & today looks a little brighter. If they can get this to pass then they will begin removing all his connections. Right now he has a mainline access in his neck, 2 accesses in his arm, an NG tube to the stomach & catheter still connected so walking is not the easiest thing to do as you can imagine. Tomorrow we meet the pharmacist to learn this great regiment of drugs that he will be taking and hopefully he might leave the hospital mid week but remain in Durham a few extra days. With transplants there are so many possibilities of returning to the hospital, some more serious than others, that they want us to be close by for a period of time. Hopefully none of those occur but better safe than sorry. The good news is his creatine (kidney function) is 1.2 (5.2 prior to surgery) and his sugars were 89 this morning & no insulin since surgery. We appreciate all the phone calls, texts but most importantly the prayers. They have literally carried us safely through the storm and will continue to do so. Thanks also to my cousin, John (a kidney transplant) who lives in Durham for helping us both and to Camille & family for visiting and helping. Our family has been wonderful taking care of things at home and we appreciate them so much and we hope to Skype with family from the hospital soon. And a special thanks to Carolyn Miller for all the "many" things she has done to help us. Also, thank you, Donna Wiles, for taking the load off me at church by having a "plan" for my absence. And thank you to all who have prayed. God is good and His blessings are countless.

Until later.....

Barbara

1-11-11

After 6 calls to Duke for a transplant we have a go and January 11, 2011 will always be a memorable and blessed day for us. We thank God and all those who have prayed so much and been such a support system for us. On Monday the snow fell faster and deeper and we knew it was getting worse with every hour so of course I was praying that we didn't get a Duke call until after the winter storm but we did. Does that go with the scripture "O Ye of little faith". Who was I to think the Lord couldn't bring us through the storm safely. We were first put on standby at 10:30am. There was a person in need of a liver/kidney transplant who would come before Aaron if there was a match (and that was ok with us as the need was obviously great). We went through the day convincing ourselves that it was going to be that way but no, it wasn't to work that way. About 4:30pm, the coordinator called again to say that the liver transplant did not match but Aaron matched all crossmatches that they do. Still the surgeon did not want us on the road as he had to fly to get the organs. Within 10 minutes she called again to tell Aaron to eat & get on the road. We hurriedly changed to our 4wheel drive as we now had about 8 inches & we knew we were headed with the weather going eastward. If driving in that weather doesn't increase your prayer life, nothing will. Yet, there was a peace about us both as we drove 40/hr on I40 for 5 hours to get to Durham. It normally takes us 2 1/2 hours and Greensboro had icy roads along with freezing rain falling. The coordinator had still not called again as we pulled into the hotel parking to get settled so Aaron talked with her after unloading all our things and again she said wait, the surgeon has not called back yet.

The "little faith group" began to doubt that the organs could be procured & get back through the weather to Duke but alas, again this was not to be the case. Ten minutes after that phone call (and me getting ready for some much needed rest) the coordinator wanted us at the hospital and by 4am Aaron was going into the operating room. By 11:30am, he was being moved into ICU & the new day began with kidney functioning well & sugar levels normal (and no insulin). You can imagine how that is to Aaron after 24 years of insulin shots (over 25,000 shots) and 10 years of kidney failure. We still cannot believe that this has happened, realization hasn't set in yet.

As most post-surgical patients, he is encountering pain and nausea but the doctors & nurses at Duke are wonderful & keep telling him how well he is doing. He is presently being moved to a step down room (2311) from ICU after having walked a lap around the 2nd floor at noon today. Yes, that is 24 hours after surgery. Of course, he had a walker dragging all his attachments and 2 women (the nurse & his wonderful wife) helping him as he walked.

Please keep praying for his recovery that all those little things that are stumbling blocks will just be removed. And also pray for the family of the donor who is now a part of Aaron.

Until later.....

Barbara