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!
Saturday, November 20, 2010
Sunday, November 7, 2010
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!
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!
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!
Tuesday, November 2, 2010
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
www.billsjournal.com
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