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.