Winding down the incredible year

From Martha:
As we are winding down the incredible year of joy, sacrifice and wonder, and anticipate our trip to Virginia for a check up at just over 6 months, I continue to offer thanks to so many wonderful amazing people in our lives. So many times since June 3rd, I have become emotional as I have thought back on the sacrifices my family has made for me and the incredible gift Ashley gave to me. What greater gift can someone... anyone, give to someone else but the gift of a renewed and hopefully more healthy life. And to have our daughter do that is still amazing to me...never once hesitating from the moment she knew I needed a liver transplant. I am ever indebted to her, and to Bryan as well, for the sacrifices he made for both of us this summer and continuing into fall, along with Ed keeping us all strong and being sure everyone was on an even keel while I am sure his stomach was churning. The sacrifices friends did for us..carting us here and there in Charlottesville, and other friends, supporting us with gatherings(some traveling long distances to be there) and everyone with encouraging, kind words. I am continually indebted to my doctors at Piedmont Hospital for giving me and my family the direction we wanted and needed at such a stressful time, and I will be forever thankful for the marvelous surgeons and the support staff at the University of Virginia Transplant center. The skill they use every day, bringing renewed life to those who are very sick is a true gift. As I have said before "ordinary people doing extraordinary things". My blood work continues to be 'normal' and I continue to play tennis (when the weather is not freezing), and yes,I am drinking more water than I ever have in my entire life! My meds are less than before the transplant, for which I am thankful, and I will just continue to keep on keeping on.

On a last note, we hear from time to time stories of "what happens when living donation goes wrong". Yes, it can happen, but the instances of it happening are few. Yes, it is quite sad when things go wrong. No one wants that, and that is why the donor is so thoroughly examined and tested and prepared mentally for what could be ahead. The donors clearly are scrutinized carefully and are cared for in a possibly more careful way because of the sacrifice they have made and because no one wants someone who has given so much to be in any way compromised. I would hope that through my and Ashley's experience, that more people will consider living organ or tissue donation. There are situations where people can be tested for bone marrow donation..a fairly painless way to let yourself be listed for that way of giving life to someone in need. Other living organ donations are very much a personal decision for the donor. Living donation for some organs is still in its "infancy", but as more doctors become skilled at this procedure and as more hospitals consider the options living donation provides for many people, I hope that more people will be able to receive the gift of life so desperately needed without the sacrifice of traveling a long distance to a participating hospital.

Thanks everyone, and we hope you all have as wonderful New Year as we anticipate in 2011!

New meds

Well, here it is November 20th- Ed's birthday by the way - and I got a call from my transplant coordinator yesterday who told me they will be putting me on some additional anti rejection medication(2 1mg. capsules of Celcept) - similar to but different than the Prograf that I am presently taking. It seems they are not ecstatic about my liver enzyme blood levels...and here I thought they were so good! Actually they are not all that bad, but apparently the levels they look at for transplant patients are not the same as for non transplant people. My liver #'s have been some elevated since returning to GA - they really were perfect or close to it in VA. Probably just a time thing...it has been 5 1/2 months since the transplant and I will see the doctors the end of December so maybe things will improve to their liking by then. Nothing is seriously out of whack so I am not worried and they don't seem to be - would just like the numbers to decline a little. My friend Bill Varner is still in ICU and now has pneumonia so that is not good but I am confident that his doctors are treating him with the best possible care. He is continually in our thoughts and prayers as is his family. I have also become in contact with the mom of someone who had a liver transplant just a week ago. The daughter is 24 and also had PSC and found her donor through the Internet. She just got out of ICU a day or so ago and seems to be doing well so I am happy about that and her donor was released from the hospital yesterday.

With Thanksgiving a few days away we realize we have so much to be thankful for! I am confident my health will continue to stay good and I will do everything to keep it going!

157 Days and All is Wonderful

From Martha ~ I regret that it has taken me so long to update the blog and many may not see it or care read it, but never the less, the need is there for me to put some things in writing...the question has been "where do I begin"?? As I look back over the past 157 days many things run together - especially days in the hospital and the days following, at the hotel. I do remember the extraordinary feeling of calm I had the day of the surgery and the day before - AFTER the little hiccup. I never once had any apprehension about having a transplant or even having Ashley donate to me (strange as it may seem)...the confidence the doctors instilled in me (or us as a family) was total and unchanging from the moment we made the decision to make this a "go". Ashley's strong determination and unwavering commitment to this from the beginning and seemingly not being afraid in the least, despite never having had more than a shot, made things for me easier as well. The very worst part was the couple of days before the surgery when we thought possibly I had a recurrence of some sort of cancer. The big "C" word was much more frightening to me and my family than the transplant surgery. Thankfully that was not the case and the surgery went ahead perfectly ! If there is anything above perfect I think the doctors achieved it with Ashley and me! We did find the care in the hospital to be top notch -the blue suits they gave us before surgery that piped warm air into them - pretty interesting(wish we had a picture!) and much better than warm blankets...the nurses were, for the most part, caring and attentive - the food was just terrible - the doctor visits were very quick and early and the longer we stayed the more we wanted to leave - which is the way they all apparently want it to be! There are so many people who contributed to the success of this transplant and one of the most special is Ashley's long time and dear friend, Jenny. What an extraordinary person..taking time away from her family for a week in December of last year to go with Ashley to Charlottesville for her evaluation. Jenny has a loving husband and two beautiful children she was away from but the decision for her seemed easy! Who would do that but a very special and compassionate friend! Then she arrived the day or two before surgery to be there for Ashley once again. Another 10 days or so away from her family so she could be an advocate for Ashley when she especially needed one... and in addition, she was the consoler, the go getter, the dog walker,the photographer, the hair dresser, the food preparer and especially the humorist...all these things and more. When the doctors told Ashley she was ready to go home..Jenny gave her little "no, Ashley is not ready to leave! It is not that she doesn't love it here but she is just not quite ready" speech. We were all quite glad they listened...it just was not quite time. The stay at the hotel was great - except for occasional 'heavy walking' above us ...the maids cleaned when it was a good time for us - or not at all if we so chose..there was a perfect place to walk Chloe ... the shopping center with every store imaginable was within walking distance...the food provided during the week and every morning at the hotel without extra charge was delicious and carefully prepared..and we were able to get Marriott points to boot!! My good friends Bob and Hallie, who live in Charlottesville, visited often while we were in the hospital and then were kind enough to do laundry and have us for lunches and dinners when we felt up to it. Hallie listened to me when I cried and made me laugh when I especially needed it! The visits with them were relaxing and perfect in helping me to gain strength in getting out and about. Bryan and Ed of course were extraordinary with the tasks we asked them to do and their patience unending... never complaining, and always there when we needed them. Our stay at the lake was probably the best decision, for me to heal and relax...my wonderful husband was tolerant of me wanting to stay there despite his sometime boredom. The "germ" thing worried us both a little, so being isolated to a fair degree made us feel better during the first 3 months. The heat (and yes it was HOT there too) was healing to me I think, the water relaxing and the food, prepared quite often by Ed, was always delicious! My Mom was with us as her time permitted and she, at 90, was also able to relax and hopefully refresh! We were happy to have Ashley and Bryan back with us as often as possible(they had returned to Atlanta before we arrived at the lake) and lucky as well to have Megan - Bryan's friend with us as well for the 4th of July and her birthday celebration! Our special new friends from Lynchburg, Bill and Catherine Varner and their two children Julia and Will visited with us as well. (Bill had his living donor transplant in February). We are very distressed that presently Bill is not doing well due to some complications, but are confident his doctors are knowledgeable in providing the best path of treatment for his complete recovery. He and his family continue to be in our thoughts and prayers. We were also happy to have my nephew and his wife Val and their smart, handsome and polite son, Bryan, visit us for several days in August. What a special treat that was!

I continued my hunt for 4 leaf clovers after getting back to the lake following surgery and I was rewarded with many! The search kept me walking and lovely walks they were! We saw deer aplenty, fox and occasionally wild turkeys. The walks helped strengthen me and certainly helped with my endurance level! We were even treated to an outing on the water on the neighbors pontoon boat! That was wonderful since we had not been out on the water for a number of years..no boat and the times there usually were holiday times ...the worst time to rent a boat and be out on the water! I cannot forget that while we were at the lake Ed had the enormous task of moving his Mother to a different retirement community in Spartanburg...no, she would not wait, and we knew she would proceed on her own if he didn't try to handle it! Doing that long distance and with a couple visits was not easy for him...stress- wise he took a beating ..but came through like a champ! My Mom came to stay with me at those times - and we had a delightful time shopping and eating out and reading and resting! My younger brother,Tom, and his wife were also able to visit before we headed home - another special treat for us - to be able to visit..do some additional yard work and repairs(the guys mainly)and do some additional shopping (Barbara and me!) We were also treated to Tom and his son's trip to Australia via photo slide show! Ashley and I had visits from Tom, Barbara and their daughter and son in law as well, while in the hospital but unfortunately neither of us remember those visits due to being 'knocked out' or asleep - sorry guys!!

When we were ready to leave the lake, we were ready, but somewhat reluctant - the peacefulness of the lake is so desirable - but home and friends were calling..literally and figuratively. The number cards and calls I received was extraordinary and so appreciated!(And the flowers in the hospital made our rooms smell wonderful as well!) Thank you USPS and Bell South and the florists! Our trip home included a stop in Spartanburg to visit Ed's Mom and we were able to help her as much as we could to become a little more organized after her move, and had a good visit at the time.

Our arrival to Chimney Rock Drive was met with wonderful welcome home signs created by our good friends here in the Village! They also trimmed our bushes so it looked perfectly manicured and like we had never left! What friends!! I spent the rest of the day visiting those I could and thanking them for all they did... a pretty impossible task! It was great to be home...unfortunately I realized during the night that another trip to the hospital was probably in the very near future. I was getting an intestinal blockage..why, I don't know...but fortunately(?) I have had numerous blockages (no fun) and knew that I needed to go to a hospital. Thankfully we went to the right one at the right time and found NO ONE in the emergency room...what luck! I was in and out after an overnight stay and clearing of the problem.. a hospital visit not expected for sure - but life is unexpected! Fortunately I didn't have to return to UVA - which was talked about by the doctors! The funny thing (if there is a funny thing) is that the xray and scan I had done at the NE Ga Medical Center again showed this perfectly round 'thing' that had been seen in my abdomen previously and caused quite a stir. No one seems to know what it is. They are convinced I swallowed a coin at some point in my life...don't' think so - and the doctors continue to tell me not to worry about it! From that time until now I have been good as new...back to playing tennis from nearly the day I got home -and into all the fun things we had been doing before we left and enjoying all the wonderful people here at Deaton Creek. I have my blood work done once a week at a medical center that is about a 15 minute walk from our house and can follow the results and only take 2 small anti rejection capsules twice a day! I will return to UVA in December and every 3 months until my one year anniversary. So here we are 5+ months since the surgery and 2+ years since beginning to talk about a transplant...it has been and will continue to be an amazing and wonderful(yes wonderful) journey for me and my family. Do I expect things to go perfectly from here on out...well in a word "yes"...but I am always on the lookout for problems.I knowproblems can happen and happen fast, but I have the same positive attitude I have had throughout this whole journey and do truly believe that the rest of the journey will be hiccup free!

One more comment...many people have told me that what has happened to me and the success is a miracle...it has been wonderful for sure...and I do believe in miracles..but I don't think that this was a miracle. I have had excellent advice from my primary doctor at Piedmont Hospital for many, many years and more good advice from my hepatologist at the transplant center at Piedmont Hospital. I was never allowed to get really, really sick and I did everything possible to make sure I was as well as possible with my disease. There are many people who ignore their doctor's advice thinking things will improve on their own or not being realistic about what is happening to them. There are also patients who for whatever reason do not choose to have a living donor transplant and in the process, do become quite sick. I would have had to wait a LONG time to go to the top of the transplant list because my disease doesn't produce the numbers needed to reach there.I was not willing to wait that amount of time or get that sick. The doctors made it quite clear, that yes being a living donor was risky for Ashley, but should things go well, I would have a much easier recovery since I was only mildly sick. Did I ever wonder if I should proceed, of course I did, but we had what we consider the best doctors at The University of Virginia transplant center. Their training and skill is unparalleled. They do what they do with as much perfection as possible but the wonderful thing is they do these amazing surgeries daily to people in great need. I am amazed at the number of people who had never heard of a liver transplant much less a living donor liver transplant. We all need to become medically aware of things and listen to our bodies and our doctors and if you are not happy with your doctor's advice do research and ask questions. Believe me we did the research and asked the questions...and we didn't always like what we heard but we knew the doctors we went with knew what they were doing and were giving us sound advice. They are ordinary people doing extraordinary things every day! So a
miracle...no...wonderful, talented, smart, well educated doctors ...YES! A miracle to me would be me winning Wimbledon!! Or better yet, a person with my disease miraculously getting well without a transplant.

This is a lengthy addition, but I did this more for myself to remember things as the time goes on...there are many more funny stories of nurses, room mates (yes room mates in the transplant unit of the hospital), the adventure Chloe had at the hotel, our first outing from the hotel to get ice cream, Jenny's always funny outlook on hospitals and doctors and nurses, other patients and visitors, and on and on...so the story will continue from time to time. Thank you to our wonderful, compassionate Ashley whose days before the surgery were not easy for reasons unrelated to this story. Your gift to me is and will always be incredible. Thanks everyone for being special to all of us...you have made this journey remarkable on so many levels! We love you all!

Family Friend and Mentor

Bryan here. Please help us in prayer for a family friend, and more importantly a strong mentor to Mom, Bill Varner. A few weeks ago Bill experienced a post liver transplant set back. Details are complicated and a little uncertain to me, but never the less the Varners are in need of some well guided prayers. As i mentioned in this blog months back, Mom met Bill a few months before her transplant. He was a few months post transplant, so as you can imagine was full of knowledge, insight, encouragement, and guidance. Since the day they met he has been an inspiration to her as well as a beacon of hope. We wish Bill the very best in his recovery.

www.billsjournal.com

All is still well...

I cannot wait to see mom and dad! We are headed up there this weekend after work. My bosses suggested that I bring Chloe to work so I don't have to go get her before we make the drive. I just may do that! A little wary about the germs though (on Chloe's fur before I bring her to mom). Will decide on Friday...

Mom is doing SO well. She said that her blood work still looks awesome, and that they lowered the Prograff (anti-rejection medicine.) As I understand it, she will never get off that drug, but it sounds good to me that they are lowering it.

She seems to have as much energy as she should, or more! I can't wait to see her!

I am really missing the lake. I love it there, and look forward to a long weekend getting some last minute sun and relaxation!

I am doing fine. I think I have all my energy back. I am still a little too tired to go to the gym to work out after work, but I get to the park. I have started some push ups and sit ups, and have noticed that I really have lost a ton of muscle. I go to tennis Thursday, so I am hopeful that my body will react well.

At first I lost probably a total of 15 pounds, but that's slowly creeping back up. I'm not sure how I feel about that! I know most of it was muscle, and it's annoying to not fit into my clothes, but I like the -15 pounds!

I feel like I sound like a broken record, but I could not imagine this to have gone any more smoothly! :)

Football season is around the corner. My family and I are huge football fans. We can't wait to watch all of the games this fall! GO DAWGS!!! (GO UVA!)

Stunned.

This weekend, my family heard of the story in Denver in which a brother died from donating a portion of his liver to his brother. We do not know the specific circumstances, other than he appeared to be healthy, and that the hospital is looking into the exact cause of death. Our hearts go out to the family, as well as the surgeons who were involved in this delicate procedure.

There have only been 4 donor deaths out of the 4,126 living liver transplants. (I often wonder if mom and I are included in this data yet.) Maybe it's 4,127? Two deaths have been in 2010. However, this is still remarkable, and I hope that the hospital resumes these types of transplants.

When I read the article, I was stunned.
So many similarities.
* They were informed of the risks.
* The donor was healthy (I believe he was 34).
* The donor complained of shoulder pain post-op.
* The donor was a blood relative.
* The brothers seemed to have an extremely supportive family system.
* The donor donated just over 60% of his liver.
* Chad said, "I tried to talk him out of it, but he wouldn't hear of it."
* Chad had PSC too.

Did it stun me? Yes. For a few days.
Did I question my decision for one second? Absolutely not.

Our thoughts and prayers are with the family and the CU staff during this trying time. Chad, we wish you a speedy recovery.

Keep on keepin' on...

Mom is doing great! She emailed me her recent blood work results, but I must have deleted them by accident. All her liver levels were perfect. Her nurse said that they were, "awesome!" So, we are so pleased. She told me today that she walked for 45 minutes today, which is even more awesome.

Among other things, Mom also has a knack for finding four leaf clovers. She has found probably 30 or more since we arrived in Virginia in late May. I found one. Typical. I think I could have found more if I were a little more patient...

I plan on going up to see Mom and Dad in a few weeks if I can handle the drive after work. I can't wait!

I am back to work, and enjoying it. The summer was a perfect time to recover. I have been walking at the park for over a month now, but it is too hot to walk after work. I am itching to get back into heavy working out, but it's just not time yet.

Last night, I tried to do some leg lifts. You know, the easy kind where you lay on your side and...lift your leg. I used to do them with weights. Like hundreds. I tried 30, and about died. This is when I realized, "abdominal surgery is no joke." I actually think I said that out loud...to which my dog just stared at me like, "Duh. this is why was having all my panic attacks!" Then, I chatted with a good friend about it, and we had a good laugh at my realization of this...ten weeks post-op. Again, typical Ashley. So, I guess for having my abs ripped open, I'm doing very well, thankyouverymuch.

We couldn't be more pleased with the results thus far. Every now and then, I stop to reflect on the summer. I wish I had kept more of a daily diary, but in hind sight, I know I was way too tired and impatient for all of that. We are blessed.

Thank you everyone for your continued thoughts and prayers as mom has her 3 month check up and finally comes back home! We are a little (translation: a lot) nervous about germs!

-ashley

Virginia IS for Livers

Happy 8 week anniversary!

Today marks 8 weeks to the day of surgery! Happy Anniversary to mom's "new" liver!

Mom's blood work continues to come back just great! She is gaining more and more energy each day, and has been walking everyday as well. By walking, I mean that she is apparently walking the hills (read: mountains) at the lake. She is on day 3.

I am also doing well. Looking forward to getting back to work. I know it will be tiring at first, but it won't be exhausting for long. I'm back to my normal routines of staying busy. I walk at the park many days, and need to get back into the gym to gain back muscle I've lost.

Ashley's MRI and Lab Work

On Tuesday, I had an MRI and blood work at UVA. Here are the results.

Blood work:

* All levels have returned to normal except for the alkaline phosphatase (liver function test). Currently it is 183. Normal is 40-150. It was 400 in June. I believe it was 400 due to the bout of pancreatitis.

MRI:

* The MRI does show some fluid in my right side. My wonderful surgeon thinks that this is normal post surgery fluid, but he wants to rescan me in January. So, I'll take a trip up to UVA for another round of labs and and MRI (or CT scan) then. Until that time, I'm free!

Liver Stats:

The volume of my liver today is 1140 cc. Before donation, my whole liver was 1416.8 cc and the Right lobe was 936.2. I have regenerated all but 276 cc of my liver! According to these numbers, mom has 66.08% of my liver.

So, we are continuing to do very well! I do not have exact stats on mom's blood work, but she continues to have it drawn every Monday and Thursday. She usually calls on Thursdays to get the numbers for all the many different things that they check. As far as I know, her labs have been trending how they should be. I do know that her alkaline phosphatase level was (about) 64...so she is within NORMAL range for that particular liver function. Of course, they monitor much more with her, and have to carefully balance her medication to go along with her stats. She is gradually easing off the Prednisone.

I will continue to update as we hear news. Mom and Dad are still in Virginia. They are enjoying time at the lake house until her appointment at UVA in September. She also wants to stay there because the first three months are the most critical, and she wants to avoid germs as much as possible while her body is recovering.

Surgery Pictures

If you don't like to see blood or organs, just don't look any further!








Above is mom's liver. Note the discoloration, bumps, and general lack of smoothness.



My part of the liver that went to mom. You can see where it had been cut off the other part of the liver (right side).



This is my liver going to mom. I think this is mom's empty spot for the healthy liver.


This is my liver being sewn into mom.

Thankful

Ashley here...

We continue to be thankful everyday for mom's excellent health! When Bryan and I got to the lake last week, we found her looking awesome! She had gained some weight, and really looks about ten years (or more) younger. Her blood work continues to remain stable, and she is getting back to normal. No tennis yet...but I rarely saw her sit down this weekend!

We were blessed to have a visit from another transplant patient, Bill, and his wonderful family. They came up to the lake house for lunch this weekend. We had a great time with his two sweet children! We ate, played in the water, lounged on rafts, and did some fishing. Bill and mom talked about the transplant experience, and we are thrilled both are doing so well.

I had my last appointment at UVA (hopefully) yesterday. From the initial look at the MRI, our surgeon says that my liver appears to have grown back completely. He did say it grew back in a different shape. I wish I could see pictures of the MRI. I have some fluid build up somewhere in my abdomen, so the radiologist will look at that today, and let us know what s/he thinks. The doctor seems to think it is just left over from surgery. Since I'm not running a fever or feeling badly, he didn't seem concerned. I will know about the blood work later today.

Otherwise, we are just going on with life as usual! Two more weeks until I go back to work. I am looking forward to meeting my class, but a little nervous about the long days. I am considering myself fully recovered (minus heavy lifting and tennis), but my energy level isn't totally 100%. I feel myself gaining energy every day, so maybe in two weeks I'll be 100%.

Oh, the best part! We have pictures of the livers during surgery! As soon as I can reduce the size of the files, I will post!

We are so thankful that this process went smoothly!! :)

-ashley

Almost 6 weeks...

It's already been almost six weeks since surgery date. Everything is going so well!

Mom and Dad are still at the lake house. Mom says she is feeling great! Before I left, she was working on getting all her medicines ordered and regulated. All of that is going relatively smoothly, and from what I understand, her blood work continues to improve, so she hasn't had to adjust her medications. She is on Prednisone, but that is gradually being decreased. I'm sure she will be glad to be off that drug.

Mom has another appointment at UVA the first part of September, and then she will be back in Georgia. She will continue having blood drawn twice a week. It will be great to have them back here!

I'm doing great as well. I am walking at the park, trying to build back up endurance. They said I had clearance to exercise July 15th, and tennis September 3rd. I am not sure how ready I am for lots of exercise, but my days have pretty much gotten back to normal. The back pain is just minimal.

Bryan and I head back up to the lake later this week. We are looking forward to a last vacation of the summer! I have an appointment next week at UVA for an MRI (yuck), and hopefully my last doctors visit.

So, again...no news is good news! :)
Thank you to everyone for your continued thoughts and prayers.

Ashley is home!

** Dad did not want to pose. But, I'm sure mom has several on her camera of him!

I got back home last night, and it feels great to be back! However, I already miss mom and dad, as well as the lake. I am sure I overdid it today, but it really felt good to be productive. I'm sure my stomach will be sore tomorrow, but as long as I'm not lifting anything too heavy, it doesn't really matter.

Bryan was a huge help because he drove up to Virginia over the weekend to come get me! On the drive home, I got to drive for the first time in over a month, and it felt good. It's amazing how quickly I'm recovering. It seems like this past week I've made leaps and bounds. The back pain (hopefully) is over, and only minor stomach "pain," if you'd call it that.

Mom is continuing to do very well. Her blood work has come back "excellent" each time she's asked. As I said before, they will call her if there is a problem. She continues to look better and better each day!! Her skin is not jaundiced, her eyes are white, and she generally looks younger.

Dad is doing well too! He has been great taking mom back and forth to the blood work visits. He also runs all of the errands as well. I also know that he is making sure that mom is not lifting too much! However, I'm sure he can't keep her still...she is as busy as ever.

I just cannot thank the staff and surgeons at UVA enough for the wonderful experience we have had. One important note: We were the ONLY living liver transplant of 2010 so far. We didn't ask if there were any in 2009.... :)

So, I'm home and just getting myself reorganized. We go back to Virginia later this month for a little while for my doctors' visit and MRI.

So, again...no news is good news!

Thank you, everyone, for all your continued thoughts and prayers!

-ashley

No news is good news!

We are all still at the lake house enjoying the wonderful view! It's really a great place to recover.

Mom is continuing to do well. I keep telling her to take naps, but I don't think she is! She is looking great, eating well, and doing odds and ends to stay "active." She gets her blood work every Monday and Thursday, and we were told that no news is good news. So far, everything has gone well!

I have less energy than I expected at this point, but that is OK. The pain in the back and shoulder is still there, but other than that, I'd say there was no real pain.

My recent blood work was trending well too. On June 9th, one of my pancreas enzymes was 350 (normal is 7-78, I think), and now it is 89...so that's good news too! The liver enzymes of course are not normal yet, but are headed that way. I have an MRI here at UVA on July 20th, so I guess they will tell us how much has grown back!

Bryan will hopefully be able to come up to the lake to celebrate the 4th with us. He has been such a wonderful help to all of us!

Chloe seems to love me again, which is good news.

Not much to report! We look forward to being out on the tennis court again (September 3 for me...) soon!

-ashley

Smith Mountain Lake Bound!

Great doctors appointments today!! We are so thrilled with all of the UVA doctors, nurses, and transplant team members. Everyone is so thoughtful and caring. I want to give an extra special thank you to my own transplant coordinator, who I won't name on this blog, but she has gone above and beyond both pre and post-op.

So far, all of mom's blood work looks as it was to be expected, and her medicines seem to be regulated. She even was able to stop taking the slew of pills she had to take pre-transplant. She got all of her staples out today, I think there were 31 in there. She will have blood drawn in Bedford twice a week while we are there.

As for me, the blood work that has come back looks good. The pain in the side, could possibly be some sort of internal torn muscle. The doctor described the mechanism they put me in for surgery, and he described it as a "Chinese torture device." So, unless my fever gets worse, or the rest of the blood work comes back funky, it's nothing to worry about.

Both of us feel great, and are ready to get to the lake!

Mom's next appointment with UVA will be in three months. Mine will be July 20th for an MRI and a last visit with the wonderful doctors. I will probably come home before then, then drive myself back up for the appointment! I am no longer taking pain medicine, so she said once I feel safe driving, I can drive.

That's all for now! Lake Bound!

Things to keep in thoughts and prayers: healthy eating, SUNSCREEN for mom, no virus, good blood work, and continued incision healing.

-Ashley

One more day here!

Hopefully we will be lake bound tomorrow! Although the hotel has made me a little stir crazy, it's been a great place to relax. I highly recommend the Marriott Residence Inn. Our room had 2 bedrooms, a family area, and kitchen with full stove, fridge, etc. It also has a pool, workout room, and a free HUGE breakfast buffet. The other really nice perk is that they offer free dinner Monday-Wednesday nights.

Chloe still hates me, but she seems to be coming around a little bit.

Mom and I were pretty tired yesterday, hopefully some energy will be back today! I also had a slight fever yesterday, which was mysterious. I let the nurse know, but this morning it is back down to slightly above my "normal." My normal is 96.8...see, I really AM weird.

Today, mom is going to get a hair cut, and I will most likely get a pedicure. I also hope to go to Whole Foods before heading off to the lake tomorrow.

The doctor for me will be getting labs, looking at the scar, and seeing the doctors. Mom's will be labs, seeing the doctors, hopefully getting her staples out, and then we aren't exactly sure if she will have any scans or not.

After tomorrow, I'll probably have a more clear picture as to when I'll be able to come back to Georgia.

Last few days in Charlottesville...we hope!

Ashley here...

Things are continuing to go very well! Mom still looks great, eyes are white, skin looks good, and she is eating very well. Foods that used to upset her stomach are now doing just fine, which is an even better sign!

Yesterday was spent resting, and also going down to the nearby outside shopping center. Dad dropped us off, and we walked around for about an hour and a half. It was good to get out, although shopping is not my favorite. :) After that, we rested some more, then went over to the Garland's for dinner. It was really nice to see everyone, and the food was awesome!

My back is continuing to hurt at night, so I'm not sleeping much. I can't really complain too much though because nothing else hurts other than being a little sore. I think I said it before, but my former personal trainer had me more sore than this on a weekly basis. I am wondering when the back issues will go away though. Once I'm up and out of bed, it sort of fades.

As far as pain medicine goes, I stopped the Vicodin sometime last week. It is really not necessary. I am taking one Valium (smallest dose they offer) at night for my back, but it's really not helping, so we will see what the Dr. says on Tuesday. I'm pretty sure mom is not taking any at all, and if she is it's only occasionally.

The rash on my stomach is mysterious, but looks better today. It's so itchy though.

My dog is having some adjustment issues. Bryan left, so she is depressed or something. She also ignores me, which is sad because she used to be at my feet or by me all the time. I have to retrain her to sleep in my room again, as she had been spending all her time with Bryan. Finally at 1:30 last night I got her up on the bed and she is still here, but no where near me. At the lake, I took her down to the water, and usually she pulls and pulls on the leash to get down there. This time, I said, "careful, careful", and she would stop at every step and wait for me to take my step. So, I know she's not totally just being mean. :)

Today, I hope to get a pedicure! Maybe mom will come, but she is worried about infection. She has to be very careful since she cannot risk sickness or infection!

That's all for now! Thank you to everyone for all the well wishes for my family!

Back in Charlottesville

Bryan left this morning. It was sad to see him go, as he has been such a big help. He took my car, and will come back up to get me when it's time to go home. Chloe is having major withdrawals already. She followed him around everywhere he went for the past three weeks.

So, now it is just mom, dad, Chloe, and me. We will be at the hotel (yawn) until Tuesday. Tuesday we have our doctors appointments at UVA. If all goes as expected, we will head to the late after that.

When Bryan and I got back to the hotel last night, we could not believe how awesome mom looked! Her eyes are white, and her skin looks so much more healthy! We can't wait to hear what the doctor has to say.

The lake was nice...it's such a beautiful place. I know I over did it the past two days. The walk down to the dock is long. The walk to the mailbox is long. The ladder into the water is something I should not have done (The water just PULLED me in...just to my waist. I really couldn't help it.) :) I just didn't rest as much as I should have. But, overall, I'm just a little sore. I figure that can't be bad.

As far as pain goes, the back pain is still there at night, but other than that I tell people that my trainer has made me about 1,000% more sore than I am after this. The swelling and bloating is still there, which is...gross. The belly ring is gone forever since I've been so swollen.

When I had my trainer, I used to do these calf exercises with 30 pound weights. That was horrible. It's interesting that walking up and down the steps will give me that same feeling of soreness! I plan on walking more, to save muscle.

The Ultimate Taskmaster

How do you thank someone for taking so much time to do so much for others...in this case there is no real way but to say thanks Bryan! You have seen me at my worst and always said I looked great, heard me speak of unspeakable things without so much as an 'ugh'! You, for the past 3 weeks have been the ultimate taskmaster...creating the blog and keeping everyone updated,running errands, listening, walking the dog, giving massages, preparing food, running more errands, being at the hospital whenever possible and staying with Chloe when necessary, retrieving mail, walking with me down the halls,prodding me to do the breathing exercises, sprinting between my room and Ashley's room,keeping the nurse's station numbers at hand in case you needed to check on things,traveling back and forth to the lake, keeping Dad on an even keel,and I am sure much more that I am not even aware of and hardly having a moment to do what you may have wanted to do. We thank you for taking taking the time from your work to be here for us and appreciate your superior at Morgan Stanley for being so gracious in allowing you the time you needed and we needed you..you will have much to catch up on! I thank you for each and every minute you have been such an invaluable help...we are so proud of you, your maturity and thoughtfulness, compassion and love. We could not ask for a better son or brother to Ashley...we feel ultimately blessed! Love Mom and Dad

Tuesday Update

Ashley here...

Today Bryan and I are headed to the lake house at Smith Mountain Lake. We are very excited, but I am SO wary about the beds there. Ouch. Still in considerable back pain, that is minimal during the day, but terrible at night. The lake is our favorite place to me, and I know my dog will love being there too.

Mom is doing SO WELL. She had her first blood work yesterday, and the levels were "about the same" (slightly elevated), but it wasn't enough for them to adjust her medicines. She looks really, really great too! I just hope she rests and takes it easy!

Some have asked about recovery for me:

1. 6-8 weeks
2. Do not lift anything more than 5 pounds for 4 weeks. I know I've broken this rule, but it's almost impossible. On the flip side, I do not open heavy doors or pick up things heavier than my laptop. The problem is the use of the ab muscles. I never realized how much they are used for everything.
3. Do not swim or take a bath, showers are fine.
4. Do not drive.
5. Rest and relax!
6 There are no food restrictions, other than probably sushi.

Mom and I go back to UVA on Tuesday for blood work, and a check up. I am not sure what they will do for the check up part, but the blood work will be to make sure that her levels are all appropriate for the amount of medicine she has to take. My blood work will be to make sure my pancreatitus (sp) is gone (still not sure what that is), and all body functions are back to normal.

As for how I am feeling, I really feel great! I am quite (extremely) sore at night, but other than that, I just move slowly. I really am resting, despite what some may think. :)

I also can't figure out if I have a huge appetite, or if I'm just eating so much less at meals, that I feel hungry more often. I am not a snacker, so this is new to me. I also wonder if growing a liver back burns extra calories.

So, Bryan and I are off in a few hours. First stops: Michael's (we are getting a picture Bryan wants framed for him), Bodo's (some for the road), and somewhere that sells comfy chairs for the screen porch.

That's all for now! I don't think I knew what to expect post surgery, but our improvements surpass my expectations! :)

Things I've learned...

Most of you know me (Ashley) well, and most of you know how random I am. So, here it goes.

1. I was hoping that they would put the mask on me and say, "We'll see you on the other side." I don't think that happened.
2. I have never spent the night in a hospital until June 3, 2010, other than when I was born.
3. Once when my mom was in the hospital a few years ago, I got SO mad that she was not in a private room. I demanded that this change. Well, I spent 7 days with a roommate last week. Karma.
4. Hospital food is terrible. So bad, that I ate a total of probably 6 bites in 7 days.
5. I do not think that someone with a hacking cough who just got out of major abdominal surgery of some sort, had such low blood pressure that they had to check it every 10 minutes, and who didn't respond to the doctors for about 10 hours should say, "Can I go out for a smoke?" as their first words after waking up. (one of my roommates)
6. I do not think that any nurse or doctor believed the lady who said, "I don't know why you are giving me this blood pressure medicine. It's always been normal in the past." I mean, lady, you said this like 35 times in 2 days. I'm sure they caught on. And, if you are going to say your blood pressure is normal, please say 120/80 and not 98/99. Additionally, they told you about 35 times that it is typical for your blood pressure to go up some post-op. (one of my roommates)
7. All my nurses were awesome. All but the one who said, (Friday morning), "Sleep?? You ain't gonna sleep today! You got PT, OT, doctors, surgeons, and blood work!" She didn't know that I would easily win this little disagreement. Luckily, the PT and OT guys, came in and said, "You don't need it. Go to sleep."
8. I'm so bloated right now from surgery, I look 4 months pregnant. It's not comfortable.
9. The good news is, I used to eat like a pig. Now, 5 bites will do it for me.
10. It takes a lot of energy to just tag along on a quick errand.
11. My belly ring may never go back now. Last time I took it out, it closed up in 48 hours.
12. The pain is not what I expected. I had tremendous back pain (due to the bed I think, at first. Now I'm just generally sore, but I would not call the incision site (9 inches or so) painful.
13. The first thing I said when I woke up was, "Why did you do surgery on my shoulder. I didn't need it." The pain I had in my shoulder was about 1,000 times more intense than anything else I have felt since. They said it was because they bent back my ribs so awkwardly. That coupled with a tennis injury, didn't help.
14. I hallucinated with one kind of pain medicine. I saw: Chloe 5 times, writing on walls, violent things, weird doctors, and pictures would change. None of this bothered me, but it bothered the doctors.
15. I itched so badly with another pain medicine. They finally decided on Vicoden. I wasn't a fan of this either due to violent dreams. The other night I gave in, and have decided they do their job pretty well. Bad dreams are gone too.
16. They made me rate my pain on a 1-10 scale. I still don't know how to do this. The lady next to me always said 9. I always said 2. I think the highest I got was a 6.

Thank you!

It's Ashley--

First of all, I want to thank everyone for their kind words, thoughts, and prayers. We are overwhelmed with all of the positive well wishes!! It really is so nice to go back and read what everyone has posted. I have already thanked Jenny for coming up to help care for us. I just cannot repay her, and words do not do justice. For those of you who do not know, Jenny has been a friend since 1988. We grew up in the same neighborhood, and is one of those friends who if you don't talk to them for a while, you can pick up right where you left off in no time.

Another person whom I would like to thank is my brother, Bryan. He is a little over 5 years younger than me, but has shown more maturity than I could during this time. He has been at everyone's beck and call with no complaints whatsoever. When I got out of the hospital, he would get up in the middle of the night to rub my back or get anything I needed. He is extremely considerate, caring, and compassionate. He has played the role of caretaker, mother, father, brother, friend, dog-sitter, errand runner, chef, and everything else with grace. Thank you, Bryan! I love you!

I could not imagine having to have been in my dad's shoes. He had both of his girls under the knife at the same time. I said before I went under, "I'm glad I'm on this end and not the one who has to wait..." That had to be the hardest part! He did this with patience and calmness. He has spent his time running back and forth between hospital rooms visiting with both, errand running, dog-sitting, and making sure that everything was ready when we got home. Thank you, Dad! I love you!

As for my dog, I think she hates me. But, that will change with time. :)

I'm getting stronger and stronger as the days go by, and having mom here is awesome! We pray that her blood work comes back great tomorrow!

My Dear Ed

I am sure all of you who are reading this know my loving husband, and I want to tell everyone what a trouper he has been through all of this journey to this point. Knowing your wife has to have a liver transplant and knowing as well, that your daughter is not only willing but determined to be the donor can creat a great amount of stress, I am quite sure (since I have theoretically only 1/2 that amount). Ed has never once questioned the decision I made that we should go ahead with the transplant in this way, nor has he ever complained about all the doctor visits to Piedmont Hospital and other local places for shots or tests and 'listing'. We also had to travel several times to UVA for visits of various sorts and never a thought about .."do we really need to do this - can't we do it here" sort of thing....he knew how important each step was and was always there to do whatever necessary to make it happen. He did wonder from time to time if I was spending too much time researching things on the computer but knew it was in my best interest and would make me feel more comfortable about it all. As "the day" came closer I could tell he was becoming more anxious and just wanted to be able to DO something to make the transplant work out just perfectly...and the only thing he could do was figure logistics which was not really possible since no one could anticipate what sort of outcomes there would be for either Ashley or myself.He became a little frustrated with that but realized that was the way it was. Two days out with the little glitch we were all a little on edge not knowing if all the plans would change but we got through that evening with his suggestion of playing our family card game of "Push" and had some good laughs and tried to relax. With the all clear and the preop day at hand everyone was feeling good! On "THE DAY" Ed was as calm as a cucumber...to possibly his surprise! MY brother Tom and his wife Barbara as well as their daughter Meredith and her husband Kyle were here to give Ed any needed support. I am sure their being here made the time pass more quickly and that he enjoyed the visit with them and all the support, love and caring they provided. (Unfortunately I didn't get to see them and if I had, I would not have remembered!)As the days passed, Ed revealed that his calmness was in part due to his complete confidence in the team of doctors who performed each surgery. With the minor setbacks, he was of course attentive and concerned but knew the wonderful nurses on 5 West were equally attentive and both he and they wanted nothing more than to be sure I was completely on track. Now that some of the worst is over (well, we hope that is the case), his body is showing so by his feeling like he is coming down with a cold so he headed off to the lake this AM to be away from us (to his regret) which he knows is best. He will return when that has passed and the kids will head over for a few days of sun and rest in another location! I am so lucky to have such a loving, caring, thoughtful and devoted husband..I could not ask for more! ~Martha

Everyone has busted out!

Free at last!! Mom and Ashley are both resting wonderfully at the hotel and extremely glad to be out of the hospital! For the first time in 10 days, we were able to be together as a family on our own terms, doing what we wanted to do. Its a great feeling. And frankly, I am looking forward to eating breakfast together tomorrow....even if it is the free Continental breakfast served at the Residence Inn with probably 20 other individuals spending time in Charlottesville, VA.

Dad and I went to the hospital this morning to pick up Mom, and after spending about 30 minutes with the discharge nurse going over medication, lab work schedules, vital signs, and many other things we should be mindful of from now on, we were able to leave. On our own. Normally a nurse or an orderly escorts you out, but we got special treatment. Carrying Mom's belongings, flowers, and box of meds, we gave our thanks to the wonderful team on 5West and continued on our way!

We will all spend the weekend together here and sometime next week I plan to take Ashley to the lake for a few days to enjoy some sun, more rest, and much deserved relaxation. Mom and Dad will follow shortly after to join us!

Our mission is near completion here, but the journey is far from over. Mom will have to get used to a new regimen of medications, regular blood work, and a tweaked diet, but I don't think she will have any problems adjusting :)

More to come...as always!

Mom Comes Home!

After 9 days in the hospital, we have received clearance to bring Mom home today! Her liver numbers continue to improve, and frankly have never been an issue after surgery. Yesterday afternoon she began drinking more fluids and eating more solid foods. From the time I left the hospital yesterday morning to the time I returned after lunch, her energy level had dramatically increased. When I returned after dinner to take her for a walk outside I was amazed at how well she looks. I think I could have snuck her out the back door last night and no one would have objected.

We are going back to the hospital shortly to pick her up. Before she can leave I am sure her transplant coordinator will need to go over mountains of information with her. I am sure it will be hard for her to stay focused during that time....that's why we will be there! And I wont be surprised if many of the wonderful surgeons and RNs come by to wish her well. Might be a good picture opportunity!

More to come later.

8 Days after surgery

Well, here we are 8 days after surgery and for the most part everyone continues to get better. Ashley has been home for 2 days now. Her first day home was probably her most challenging day yet. Her body got used to being in a mechanical bed for 6 days that would allow you to lay somewhat sitting up. Moving to a flat hotel bed (as well as much more walking around then she was used to) was hard on her back. She has been suffering from severe back pain in her middle and lower back. The "ropes" down either side of the spine have been really tight making any position (laying down or sitting up) very uncomfortable. And to make it worse, she can only lay on her back! I got up and massaged her back a few times in the night to help ease the pain. The next morning we went on a hunt to find a good back massager, heat pads, icy-hot.....what ever we thought would do the trick. The back massager provided temporary relief, but i think its just one of those things that can only heal with time. Today it seems to be a little better with the aid of a muscle relaxer prescription called in by her transplant coordinator.

Mom's liver and lab work numbers drawn from her blood continue to show great improvement. She was taken off 1 of her 3 immune suppressant, or anti-rejection, medications yesterday which is a great sign the liver is working well. She continues to have a hard time eating, leaving her severely malnourished and a little dehydrated which is causing her to be very weak. Today she has been drinking much more fluids and has been drinking Ensure which is packed with the calories, protein, vitamins and minerals her body needs. This is nothing to be alarmed by, it is rather normal for someone who has not eaten much solid foods in 8 days. She is just ready to get her strength back so she cane come home! But her pain has been almost non existent (so she says), which is great. Her bowels have started to wake up so as soon as she starts to eat and get that energy back we think she can come home....we hope tomorrow!

Jenny left VA today to go back to August where she can be with her family. We can not thank her enough for the time and energy she has put in to helping our family.

Hope everyone is doing well as you continue to pay for speedy recoveries for Mom and Ashley!

More to come.

Bryan

Ashley is home!

Today brings good news....Ashley was able to come home from the hospital today!! She was discharged this morning and is resting in the hotel room. From one bed to another! Its too bad the hotel bed is not adjustable... makes getting in and out a little difficult! All in all she is doing great. A little more sore today, but I think that is just because she has been moving around a lot more, and has been sitting/laying in positions she has not been in while at the hospital. She is very excited to be back with Chloe (her dog) and in the hotel. A change of scenery certainly can raise the spirits and help the body heal faster.

Mom is still doing great. She had a CT Scan yesterday to check on her liver and other organs, and everything checked out perfect! Her blood work continues to show progress every day, proving her new liver is getting stronger. She still remains in a little discomfort, but that can be expected. As we sit here almost a week out of surgery, I am amazed at how well she is doing. While it is taking a bit of time for some of her other organs to wake up and start working at 100%, her liver has been functioning wonderfully. And that of course is of the utmost importance.

One home, one to go!

Mom has shown great interest in making a post on the blog very soon, so stay tuned for that!

Special Thanks

We would like to give a special thanks Jenny Wright. Jenny is Ashley's long time friend (BFF if you will) dating back to grade school. She has been there for Ashley through thick and thin over the years and for her to be here during this time shows her true love for the friendship they share. It takes a special person to pick up everything and be miles away from her family for 7-10 days, and for that the Hunt family is grateful. She brings a women's balance into care taking that Dad and I can not provide. Thanks, Jenny. From all of us.

Monday Update - Day 4

Mom and Ashley continue to do great and are still on a clear road to recovery. The weekend came and went before we knew it. Much progress was made, but with each hurdle passed brings on new challenges.

Ashley's pain has subsided considerably the last 36 hours, which is a great sign that everything is healing nicely. She has been in some discomfort, but nothing out of the ordinary for mid section surgery. I feel if she can just get over this one hump, she will feel like a million bucks and be on her way out of here. The Dr actually said she could go home as early as tonight, but I think she (and we) would feel better if she could stay another day just to make sure she does everything she needs to do before she is discharged.

Mom has continued to progress wonderfully. Yesterday she was taken off all her IVs and was free of her "walking pole." Late last night we had a slight set back. Mom got sick in the middle of the night and again early this morning. This was just simply do to the bowels not quiet working yet. Everyone has said that often times the first day or two after surgery goes so smoothly, but because some some of the organs haven't quite "woken up" yet, it can be uncomfortable a few days later. Albeit a set back, the Doctors said it was normal and is nothing to worry about. Mom is still in high spirits, which is always good. We were told there would be many steps forward and a few steps back in the journey to recovery, and we are lucky this has been our only step back so far.

Yesterday, Jenny washed Mom and Ashley's hair in the shower and it instantly made them feel better. Recovery is not only physically challenging, but also mentally challenging. Sometimes its just the littlest things that can bring on a whole new feeling and emotion.

Monday at the hospital is certainly much busier then the weekend. Many more nurses and Doctors coming in and out of the rooms, and a lot of student RNs running around, but they are all very nice and helpful. While weekdays on the recovery floor are a little noisier, you certainly get faster service.

A lot of Mom and Ashley's neighbors on the "west wing" recover floor are transplant patients, most of whom seem to be recipients. We can all be so grateful they were given the opportunity to receive a donated organ that very well could have saved their life. I have learned over the months that the organ transplant recipients/donor community is a very close group. Everyone shares the same bond of being given a second chance at life, and I can only imagine how that feels. The transplant recipient community is very small, but we can do our part to help make it as big as it deserves to be by being an organ donor.

Movin' Right Along

Jenny here. What an adventure this has been. As I've told many of you, these have been some of the most raw, emotional and miraculous few days I've ever experienced. These two ladies are pretty amazing and I'm so proud to know them. They have always been close, but the power of the bond they now share is immeasurable. Martha looks better than she's looked in quite some time. The yellow tint that comes with liver disease is all but gone, which is clearly indicative of Ashley's liver at work. Amazing.

Many have asked for an update. Everything is going according to schedule. Anyone who has had surgery knows that the process includes good and bad days. While times have been mostly good, there have been some (albeit normal) rough patches. Any prayers for strength during these times would be greatly appreciated. Both Ash and Martha are getting up a walking a ton and neither complain. Ashley totally hates the constant naps, as we all know she doesn't really ever even sit still! We have reassured her that re-growing a liver is hard work, and napping in this case is probably a good idea!

As the adrenaline of the past couple of days wears away, the soreness and exhaustion becomes more apparent but is, for Ash and Martha, manageable, and they're doing it with grace. Many of us would be lucky to have half of their strength and ease in this situation.

Everyone here is wonderful . The team of doctors, nurses and assistants are patient, kind and willing to answer many, many questions (trust me, I'm doing a lot of the asking). They have said time and time again that both Martha and Ashley are doing amazingly well and they couldn't be more pleased. I've even heard it said that this case is near perfection. Would we expect any less from the Hunt ladies?

The picture above was taken yesterday on one of the many visits between the two hospital rooms. Sorry for the poor quality. They don't install proper studio lighting in the hospital rooms these days!

One last thing. Many of you have inquired about where to send flowers, cards and gifts. Martha and Ashley each have roommates, so space is very limited. University Hospital has a great eCard service. If you follow the link, you can choose a card, send it and the nurses will get them to us. Both of them would love that! If you're interested, here's the link: http://www.healthsystem.virginia.edu/internet/e-cards/choose/home.cfm
Once everyone is at the lake, we'll post that address here, and they'll be able to receive care packages of all sizes.

Thanks so much for all of the thoughts and prayers. They are appreciated and don't go unnoticed.

Much love from Virgina!

The Day After

Well, we are just over 24 hours post operation and both Mom and Ashley are doing wonderful. Much better then expected, actually! Surgery was completed around 12:30pm yesterday for Ashley, and was quickly followed up with mom's completion about an hour after.

Dr. Schmitt and team immediately began seeing benefits of Ashley's liver working its magic in Mom. Dr. Schmitt actually told us that this was the "most successful live liver transplant surgery that had ever done here at UVA." They have never had a liver be so responsive so quickly and fit so perfectly with zero complication's. I wondered if they told everyone that, but i honestly believe him. Mom looks so good, its really remarkable. Some of her jaundice coloring has started to deteriorate and her eyes have started to clear up. I was told her MELD score was 18 before surgery. This morning it was at 13, which is a dramatic drop in 24 hours, and we can only expect it to drop further as her new liver continues to adapt to her body. They have started removing some of her tubes and IV lines, slowly working her way off some of the monitors so they can get her out of ICU and into a room. They hope to move her tonight, if not first thing tomorrow morning! She is very alert and talkative today. She is a pro at surgery, so I expected nothing less.

Ashley has been doing wonderful and has been incredibly strong through out the entire procedure. As expected she is tired. Sleep is hard to come by with Drs coming in every 30 minutes to check on things. Not to mention the cleaning crew cleaning the bed space next to us. I don’t think they could be any louder. But i guess it comes with the territory. This morning Ashley had the chance to walk over and see Mom for the first time since they were separated yesterday morning before surgery. That was a warm and loving embrace. They were both very excited and relieved to see each other. After the visit she got some short periods of sleep then got up and walked again. All very good signs. Couple that with being able to drink liquids and eat some jello, I would say she is well on her way to a speedy recovery!

I have to say, I didn’t know what to expect going into this surgery. I had faith the procedure would be nothing but a total success, but I didn’t know what to expect as far as recovery. I mean, an every day human being and his team of surgeons took a perfectly good organ from a perfectly healthy young adult and placed it into the strongest person i have ever met and made it work instantly! That to me is just completely unimaginable. It is amazing what these surgeons can do. They really are miracle workers. And what makes it great is if you tell them that their response is always "well, its just all in a days work". They do what they do because they love to save lives. I was surprised to see how often the team come around to check up on Ash and Mom, but i have figure those moments are what they work for. I cant imagine there is a better feeling then to see and talk to the families they perform these miracle for. What a rewarding profession.

My rant for the day: I had the opportunity to see the annual salary our head surgeon made for 2009. I wasn’t being nosy looking for it, but I came across it as I was looking up his medical profession history (an amazing list of accomplishments for such a young Dr). Now, I am an avid sports fan, and understand the economics behind professional sports that allow teams to pay their prized athletes the multi-million dollar contracts the receive. But when a bench warmer who often times doesn’t get to see the playing field makes 3 times as much as our Drs do, it just strikes a nerve. Here is a man who has assembled a team of life savors who perform their jobs perfectly every time they "take to the operating table." While they still make a comfortable living that I would like to experience one day, to me, if anyone should be making top dollar, it should be these people. They bat for 1.000, they score 100 points each game, they throw 5 TDs and complete 40 out of 40 passes, and they pitch perfect games every time they take the field.

To read a quick Bio on our head surgeon, Dr Timothy Schmitt, click the link below.
http://uvahealth.com/doctors/physicians/541

Success!!!

Mom's surgery is now complete and was a complete success! Dr Schmitt (head surgeon) said the surgery went flawless with no complications what so ever. Her body is taking to the new liver very well and Dr Schmitt can already see the benefits of the new liver working. What an amazing surgery and an even amazing team of Dr's. We can not say enough about UVA Medical.

Mom will be taken to ICU soon where she will spend the next 24 to 48 hours having her vitals closely monitored while her body adapts to the new liver. She will also be on a heavy dose of immune suppressant drugs to help keep the body from rejecting the new organ, so the time in ICU will be important.

Thanks everyone for the continued prayers and support. What an amazing time for Mom and Ashley, two extremely amazing human beings.

1 Down, 1 To Go

We just got word that Ashley's surgery has been completed successfully! What a relief. The Surgeon said she did great, her liver looked great, and the surgery went perfectly. She is now in ICU and will be there for a few hours so the Dr's can closely monitor her vitals as she comes out of anaesthesia. We expect her to be in her private room in the next 2 to 3 hours.

They are now working on getting Ashley's liver into Mom. Again, the next few hours will be extremely critical but we have confidence in our surgeons. We expect to hear more good news in a few more hours!

4am Start

The day came early with a 4am wake up call to get us up and moving. No breakfast for anyone in the room, wouldn't seem fair to eat in front of Mom and Ashley. No coffee either. That was hard. We got to the hospital about 5:20am, checked in and just as we got settled in the waiting room they were taking mom and Ashley away. Our "usher" took Mom and Ashley (as well as myself and Dad) up to the surgery pre op floor where they got Mom and Ash all dressed up and hooked up to IVs. The gowns they wore we pumped full of hot air to keep them warm. Mom loved this. We sat around for about an hour before they were taken away to surgery. During that time we just talked and tried to make light of the situation by joking about the Drs and nurses who would walk by. Don't worry, nothing bad was said....wouldn't want to have anyone over hear us and "get revenge" on the operating table. Karma is not always kind! In all seriousness, we could not have asked for more caring, loving Drs and nurses. For the past 3 days they have been nothing but accommodating. Our team of surgeons have really made us feel at home with the personal and attentive care they have given our family. We can only expect the treatment on the operating table will be nothing short of top notch.

It is now 8:45 and Mom and Ashley are currently in surgery. We were told we would get updates about every 2 hours which is comforting.

Until then....

Here We Go

After a wonderful dinner at my VBF's home, we are back at the hotel (which is great by the way) getting ready to get up at 4 to do the lovely antiseptic shower that we have to do again in the AM and then I am sure they will do it all again in the hospital! Oh well - don't want any of those pesky little germs! We are good to go and just don't want to wake up in the middle and tell them it hurts...am sure the nurses will get enough of that down the road!

Thanks to everyone for all the love and prayers..we feel surrounded by it all! I feel like the luckiest person in the world at this point and so proud to have such a "giving" daughter and loving and caring husband and son.

1st Drama over

Ashley said it all except that I had an EGD not ERCP..minor difference to a non doctor...ERCP goes into the bile ducts and liver - the EGD goes other "interesting" places.The interesting place was not so interesting after all thank goodness,no biopsy needed either, so we are NOW good to go again after the little hick - up. I was confident that all would be fine except for moments of thinking I would have to be deciding whether to have a different unplanned surgery here or in Atlanta forcing all this planning to be put in some sort of holding pattern...fortunately that decision didn't have to be made and the rest of the day holds dinner (lite for Ashley and me) with VBF and family with lots of laughs. Ashley seems relaxed - "seems" being the key word, but she and Bryan (and Chloe) have enjoyed exploring Charlottesville together and I am sure talking about the upcoming event. Thinking of everyone and feeling the love and prayers! Thanks for those! And thanks to Bryan for keeping everyone updated...sure saves Ed some added stress!

Less than 24 hours!

It's Ashley...

Whew, the last 24 hours have been crazy. Mom had to have a routine CT scan, and they mentioned while looking around that she may have swallowed a quarter at some point in her life. Something was showing up, and they were sure it was metal! So, she left wondering what it could possibly be...a quarter? A tool from a previous surgery? Um...weird.

Later in the evening, the nurse called and wanted to do an ERCP to take a look. An ERCP is where they basically stick a camera down your throat to look around down there. Apparently it was not metal, it was some sort of "thickening" on the small intestine. (The nervousness began now...) About an hour later, the doctor called and wanted to do an ERCP and a biopsy. They also said that just because her blood work had come back normal, that didn't really mean anything. You can find out your tumor marker levels via blood work, and hers have been normal. (More nervousness...)

So, after a tense night and lots of prayers, we headed to the hospital for the ERCP. She went back, they put her in twilight, and we waited. (A plus for going under the knife tomorrow will be that I don't have to wait around...waiting...now THAT takes courage!!) About an hour or so later, our transplant surgeon came around the corner and said, "It's fine. It's totally normal. Everything is regular." Those were the best words I'd ever heard! So, I proceeded to burst into tears...I didn't hear much of what he told dad and Bryan. I think he said that it was totally normal considering her gallbladder cancer history, etc.....it appeared to be some sort of fold in her small intestine.

So, here we are...relieved. I don't feel like I have to worry anymore.
Onward and upward!

Mom is groggy, but eating a good meal at Ruby Tuesday. Tonight will be spent at dinner with her best friend from childhood and her family. Jenny also gets in town to be my "personal assistant."

We will find out the surgery times later today. Right now we think it will be early.

Thank you all for your continued thoughts and prayers!

-ashley

The glitch has been resolved, everything came back normal and we are back on track for surgery tomorrow morning. Thanks for the continued prayers and loving support. More to come later.

Always a Glitch

Seems I will have to have another unexpected test tomorrow...ERCP in the AM with biopsy ... see what happens with that and go from there..."the best laid plans" as they say...keep us in your prayers!

Less than 48 hours...

It's Ashley this time.

Today we had our pre-op appointments. We went to the transplant clinic and met again with the doctors, nurses and transplant coordinators. They are all so nice and helpful. My transplant coordinator gave me final details, and informed me that a man by the name of Walter will call me tomorrow for a report time for surgery. It seems awfully secretive!

I had bloodwork, vitals, paperwork, and meetings...it looks like everything is good to go! We will probably have to report to UVA at 6 am on Thursday. According to my (overly) optimistic surgeon, I can go home in two to three days. According to my wonderful transplant nurse we will shoot for Tuesday or Wednesday for me to get out of the hospital.

Two fairly exciting things happened today:

1. We were leaving the transplant offices, and a lady stopped me and said, "Are you getting ready for a transplant?" So, I told her, and she said, "Oh, you will love it here. My husband is three months post liver transplant and is doing very well!" We talked to them for a few minutes, and she raved about the team of doctors at UVA. She said, "I could tell by your eyes that you were about to undergo the procedure. We looked that same way about three months ago." (This just made me wonder if my eyes were extra wide today...)

2. After the appointments, Bryan and I went over to Mellow to get some pizza. As we were waiting, our entire surgical team walked by and sat down near us. I guess they need to eat as well. I'm glad neither one of us were drinking a beer. In that same hour, we also saw the RN, and a girl who went to High School with Bryan.

Now the wait begins! Thursday will be here before we know it! See you all on the other side!

Thoughts from Mom: "Passions, Stress, and Friday Dinner"

Passions:
"If you asked me what my passions are, I would easily say my family and tennis...

Ed and I have been married for 41 years and he and out 2 children are the loves of my life. Like most families, we celebrate holidays, birthdays, and as many other occasions together as we can. We almost always spend at least 1 week together at the lake house on Smith Mountain Lake in Virginia. What wonderful memories we have made there over the years - swimming, boating, rafting, playing cards, relaxing, reading, working, and always laughing. Oh, and i cant forget....finding 4 leaf clovers! (I have found 11 over the past two days, a good sign i am sure!)

As for tennis, I played with my very best friend, Hallie, when we were young, even winning a trophy from a city park competition. I picked it up again when we moved to PA and introduced Ashley to it. Upon moving back to Atlanta, the whole family played with tennis friends becoming best friends - In Neely Farm and then at Deaton Creek, as well as Ashley's neighborhood tennis team. How lucky can I be to play tennis with our daughter even though she is much better then I am. BUT, she never gets mad at me....well, at least she doesn't verbalize it! LOL! Her friends are my friends, and I feel lucky to know them. I hope my passion for tennis will help pull me through the recovery. That will be awesome to play again, I am certain of that! and I look forward to it in the future. Will Ashley's liver portion make me a better tennis player?? Time will tell. "

Stress:
"I can not even begin to realize the stress Ed will be going through having a daughter and a wife in long surgeries at the same time. I do not feel stressed as we sit here 3 days away. Ashley says she is not stressed about the surgery, and i don't believe she is. But maybe any stress that may be weighing on her about the surgery is small compared to the other things that have occurred during the year. Through out everything, she has remained steadfast in wanting to continue with "The Plan", though i have repeatedly said she could back out at any time and things would be fine. We would just take a different path. As we move forward to June 3rd, I feel like we are prepared.

Friday Dinner:
Friday, May 28th, Ed and I had dinner with Bill Varner, his lovely wife Catherine, Alison Baker, and her delightfully funny husband Kurt. I first met Bill - a liver transplant recipient - through his journal [ http://www.billsjournal.com/ ]. I was intrigued because he had the same disease that i have (PSC). I became fascinated with every aspect of his story - How Alison became his donor; his live before surgery, and now after. Even more interesting is that he lives in Lynchburg, VA just an hour from the lake house! What a golden opportunity for us to meet he and his wife (who incidentally grew up in Atlanta) and his beautiful donor and her husband! Bill was transplanted in late February 2010 and both he and Alison are doing wonderfully. They shared with us their experiences and were so positive about how well Ashley and I would do. Both Ed and I appreciate and cherish out time with them, sharing experiences both before and after surgeries. We will always consider them very special friends and I know we can call upon them at any time and they will be there for us, just as i hope we can do for others down the road. Many thanks Bill, Catherine, Alison, and Kurt!

Thank you to everyone for your thoughts and prayers in the coming days and weeks. We can all feel so loved! "