Friday, June 15, 2012
As the time goes by I am sure my memories will fade, but I will never forget the wonderful care we received, the terrible food, the one or two nurses who were not the best but certainly the others who went over and above to be sure we were comfortable.Funny, but I remember the special way the nurses would say "you're welcome" and I knew they really meant it! I am thankful for the quiet strength of my family..never showing worry and always on call as we recovered to our full strength.I have thanked so many in previous parts of the blog and again I think of them. We celebrated this year as we did last with family and a couple special people who helped hold up Bryan and Ashley during this time having dinner at the same restaurant as last year. Maybe it will become a tradition.We reminisced about the event and how well things went and each person's memories of that time...a very special time in my life.
Now that we are a couple weeks past the 'anniversary' day, I have continued to have good blood work over the months, save one thing...my sodium seems to have been running low, only 5 pts. below normal, but enough to cause some worry to my transplant coordinator at Piedmont Hospital. She thinks that possibly I have been drinking too much water (go figure since I have never been a water drinker). I was instructed to drink other things - no water - so that is what I am doing. I will have the blood work done again in a week or so and then we will see what is going on. Because I have been so fortunate to have no problems, I continue to believe that all is or will be fine. If it is not, and it would not be a liver problem, rather a kidney problem, I will see a kidney doctor go from there. I am not concerned and know that whatever is the issue will right itself. I feel good and do all the things I did before the surgery, thankful everyday for not only my health, but Ashley's good health and for the support we have received over the years of this adventure.
Sunday, May 29, 2011
In retrospect I wish there were many more stories of successful living donor transplants out there and maybe other hospitals would find the funds and courage to step up and be a part of this wonderful experience. We all know things can go wrong, but in our case things went perfectly right.There are so many more cases like it I am sure! I could go on and on but THANKS TO ALL will have to do!
We have laughed allot and shed a few tears but more laughing than not! The story will continue ... all in a good way I feel sure.
Saturday, March 5, 2011
I had great news the first of March from my transplant coordinator who said (after asking) that I didn't have to go to VA for my 9 month, 15 minute (or less) visit for them to ask me how I was doing and see that I was doing great! What good news - especially with rising gas prices! We will return in June (14th to be exact) for my 1year anniversary visit! What a pleasure that will be! We plan to stay at the lake for a couple weeks or so renewing our spirit and enjoying some family time.
Ashley is doing great as well...will undergo another surgery - sinus - the end of March. She has chronic sinus trouble that only surgery will help and hopefully cure! She has been on heavy duty antibiotics from time to time and they have caused little if any relief. She was able to smell shortly after the surgery for a short while and we figure it was due to the really heavy duty antibiotics during surgery. But, alas, her not being able to smell and taste to any degree has returned and she will be very happy to have this in her past.
Bryan happily just got a 'new' car and is quite happy with the rugged Nissan Exterra. He, as well as Ashley will join us at the lake for a bit of family time.
Ed is well and his Mom is finally settled in a lovely memory care facility.
We continue to have much to be thankful for!
Saturday, January 15, 2011
Friday, December 24, 2010
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!
Saturday, November 20, 2010
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!
Sunday, November 7, 2010
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
Tuesday, August 31, 2010
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!)
Wednesday, August 18, 2010
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.
Thursday, August 12, 2010
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!