I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: pelagia on May 30, 2008, 05:01:29 AM
-
It's been a little over two weeks since my husband received his new kidney from our brother-in-law (my sister's husband). He is healing very well and the kidney is doing a fantastic job :yahoo;. My brother-in-law is healing too - said he was 90% back just a few days after the surgery - but now he is home and he is still feeling a little tired and maybe not as strong as he was before the surgery (he's a big strong guy), which probably isn't surprising to those who have been through this. It has been a bit of a whirlwind coming home and getting everything settled (and disinfected :)) and I have not had a chance to catch up with IHD until this morning. As always, I started reading to catch up with what is going on with all of you and now the time has flown by (I need to get ready for work as I have a meeting this morning). I hope to have more time to post some details this weekend.
Linda
-
Great news, keep us up to date.
-
:yahoo; Linda. So glad things are going well. Please keep us posted when you can. :cuddle;
-
We are so happy for all of you. When you get a moment, we will enjoy hearing the whole transplant experience. It is always good to read happy ending stories :2thumbsup; :grouphug;
-
and I have not had a chance to catch up with IHD until this morning.
Linda
I guess we can forgive you just this once. J/K Congratulations to your Husband.
-
:yahoo; so happy for you all.
-
Yahoo for hubby! Glad it went well. Can't wait to hear more.
-
I got all excited just reading the subject line of your post. I'm so glad things have gone well and you're home. :grouphug;
-
Yay!!! I'm so happy for your husband and yourself (of course, you benefit too!) :cuddle; :cuddle; :cuddle;
-
It's been a little over two weeks since my husband received his new kidney from our brother-in-law (my sister's husband). He is healing very well and the kidney is doing a fantastic job :yahoo;. My brother-in-law is healing too - said he was 90% back just a few days after the surgery - but now he is home and he is still feeling a little tired and maybe not as strong as he was before the surgery (he's a big strong guy), which probably isn't surprising to those who have been through this. It has been a bit of a whirlwind coming home and getting everything settled (and disinfected :)) and I have not had a chance to catch up with IHD until this morning. As always, I started reading to catch up with what is going on with all of you and now the time has flown by (I need to get ready for work as I have a meeting this morning). I hope to have more time to post some details this weekend.
Linda
Well, I'm finally back with a little more of an update...
We first learned that my husband has PKD about 25 years ago, when we were in our 20s. His creatinine increased steadily over the years as his kidneys grew larger with cysts. In late 2003 the doctors told him that he would probably need to go on dialysis or have a transplant within a year or two, but in the end, he managed to make it until March 2008. His kidneys were so large that he had to have a double nephrectomy in order to make room for a transplant. He lost 30 lbs following that surgery, reflecting the combined weight of the kidneys and weight loss in the hospital from not eating. He was still in quite a bit of pain and barely eating when I brought him home (incision was vertical through abdominals) and was also dealing with dialysis. The dialysis in particular was very difficult for him in the beginning. He would come home and sleep for hours after each session. At first he had a terrible rash all over (probably a drug reaction) and he actually lost an upper layer of skin from his entire body within a few weeks of the surgery. I discovered IHD late one night while I was searching for anything that would help me to understand what he was going through mentally and physically. The site (and all of you) have been a great resource, full of knowledge, experience, caring and humor. :thx;
So, as I mentioned in my earlier note, he had his transplant on May 14th, which was about seven weeks after the nephrectomies. He's doing really, really well. It's a complete contrast to the first surgery. The transplant team told us it would be this way - that he would start feeling well as soon as the kidney started working. We are so thankful for the incredible gift of this healthy kidney. It started working right away and by the time Stephen left the hospital his creatinine was 0.73 (day 6). Last week it was 0.69! :clap;. His amazing, courageous, generous donor - my brother-in-law Michael - is healing well, too, although he is still feeling a little tired. Michael has a wonderful sense of humor and he kept his nurses thoroughly entertained - but not until after he got through day 1 post-surgery, when he says he felt like "Alpo".
Michael and my sister live in NY, so we are having to keep in touch by phone. Luckily, Michael is going to be able to drive down (with my Mom) for my son's high school graduation in a couple of weeks. We are all looking forward to spending some time together.
As things settle down we are focusing on trying to get back to some sort of routine around the house. I resurrected the "bird clock" from the garage to help Stephen remember what time it is and when to take his pills. Have you ever seen (heard) one of those? A different bird call sounds on every hour. It used to drive me crazy, which is why it was in the garage!!! Now I am enjoying getting those little reminders. I found a website for watches that have multiple alarms for the folks who need to remember to take pills multiple times each day, but I haven't found a watch that has bird calls!
P.S. My husband is a guitar player, so I have to use this to say goodnight... :guitar:
-
I added Stephen to the list - http://ihatedialysis.com/forum/index.php?topic=4927.0 - thank you for the update - hoping for a speedy recovery! :yahoo;
-
I hadn't seen that list yet. Thank you for adding Stephen.
-
How awesome is your family! Be well, and heal well. Thanks for sharing your wonderful news. Now go enjoy your "new" husband! :guitar: :2thumbsup;
-
:yahoo; Linda,
Awesome news! Glad hubby did good!!! And your brother-in-law!!!!!
:bandance; :bandance; Lori/Indiana
-
Oh Linda, how exciting, congrats to you and Stephen :)
-
Thanks for all the update details Linda. What a wonderful gift and I'm so glad that both Stephen and Michael are both doing well. My sister-in-law is one of my potential donors and we do the first bit of blood testing tomorrow morning. I hope things go as well for me as it has for Stephen and I wish you all continued kidney success. :clap;
-
Thanks for all the update details Linda. What a wonderful gift and I'm so glad that both Stephen and Michael are both doing well. My sister-in-law is one of my potential donors and we do the first bit of blood testing tomorrow morning. I hope things go as well for me as it has for Stephen and I wish you all continued kidney success. :clap;
You have a wonderful positive attitude Monrein. Every day we learn how important that is for well-being, so keep it up :cuddle;! I will be keeping you in my thoughts.
-
What a wonderful story. I'm so glad your husband and brother in law are both dong so well!
-
Week 3 - yahoo :bandance; Today I take my husband to the hospital for his last zenapax transfusion.
-
:yahoo; :bandance; :clap; :bandance; :yahoo;
-
Week 3 - yahoo :bandance; Today I take my husband to the hospital for his last zenapax transfusion.
Hi Linda,
I had to look up Zenapax because I wasn't sure what it was. Does he do this just once? I don't know anyone else that received this transfusion after transplant, is it routine at your center?
I hope Stephen is doing great! Best wishes! :2thumbsup;
-
Everything went well with the infusion today. It was done at the hospital, which is a 3+ hour round trip, but we're home now. I never thought to ask about the Zenapax and I don't know how commonly they use it. It's on the clinic's general list of antirejection meds that was included in Stephen's notebook. He also takes Prograf, Cellcept and prednisone.. He had three infusions of zenapax, one on the day he was transplanted, one on day 7 (actually was 6 since they let him out early) and the last today, at three weeks.
I always worry a bit about using wikipedia as a source of information, but find it always so readable. The entry there states the following:
"Daclizumab (Zenapax) is a therapeutic humanized monoclonal antibody to the alpha subunit of the IL-2 receptor of T cells. It is used to prevent rejection in organ transplantation, especially in kidney transplants."
"Daclizumab usage may also be indicated in place of a calcineurin-inhibitor (ciclosporin or tacrolimus) during the early phase after kidney transplantation, when the kidney is recovering and vulnerable to calcineurin-inhibitor toxicity. This has been shown to be beneficial in non-heart beating donor kidney transplantation."
I will try to learn more when I have an opportunity to talk to the folks at the clinic.
-
:bandance; Congratulations on your husband's successful transplant! :bandance;
-
Today is the one month anniversary of my husband's kidney transplant :bandance; :bandance; :bandance; :bandance; :bandance; :bandance;. It's a great joy to see him puttering around the house and generally feeling good. He plays acoustic guitar for a living and is starting to book concert tours again. Looks like he'll be traveling to the midwest at least twice in September. This would be a lot more complicated if he had to be on dialysis, so we are incredibly grateful for the gift of the kidney. Any acoustic guitar fans out there? :guitar:
-
I loved reading your posts!!! Congrats to you and your husband on such a successfull transplant!!!!!! :yahoo;
-
Great update _ I am happy he's doing well!
Jenna's brother plays acoustic guitar, been playing since he was 13, now he's 20. Best of luck with the concerts! :2thumbsup;
-
My mother and Michael arrived at about 7:30 tonight. They are here for the weekend because my son is graduating from high school. It's the first time we've seen Michael, my husband's donor, in 3 weeks since the transplant. He looks wonderful and says he feels 99%. He says he is to the point now that he sometimes forgets completely about the kidney donation! We can never forget and have been thinking of him every day. What a joy it is to have him here with us now. It is going to be an amazing weekend. :bandance; :bandance; :bandance; :bandance; :bandance;
-
That's great! And I love your avatar photo - you guys look wonderful!
-
Today is the one month anniversary of my husband's kidney transplant :bandance; :bandance; :bandance; :bandance; :bandance; :bandance;. It's a great joy to see him puttering around the house and generally feeling good. He plays acoustic guitar for a living and is starting to book concert tours again. Looks like he'll be traveling to the midwest at least twice in September. This would be a lot more complicated if he had to be on dialysis, so we are incredibly grateful for the gift of the kidney. Any acoustic guitar fans out there? :guitar:
Hey, is your husband SB, the fabulous multi-guitarist? Sure looks like him in your avatar photo. Wow, I saw him in concert 5-6 years ago in Albuquerque, and he was GREAT!! How cool! And how wonderful that he got a new kidney so he can keep on doing what he does so well. Regards from a fan. :clap;
-
Hi Linda, :cuddle; I'm so happy things are going well. Here is another thread on Zenapax. Our transplant hospital also uses it. My husband did have a reaction to it the last time he had it.
http://ihatedialysis.com/forum/index.php?topic=6008.0
-
I'm a little late but I just wanted to say CONGRATS! Having a new kidney is the greatest!
-
How small the world is! I am so happy to hear that you (xtrememoosetrax) enjoy my husband's music. I'm not sure when he'll be performing in the southwest again. He's just getting started booking jobs for the fall and winter and so far it looks like he'll be going to upper Midwest and maybe NY and Canada. I don't think he'll travel as much as he used to, but he is sure looking forward to getting out there again. I wish he would focus on getting jobs in warmer places in the winter. Then I would be happy to go with him. Toronto in January is not all that appealing to me.
-
A very happy story.
I am so glad your husband is doing well.
-
We're just about to the five week mark on my husband's transplant. He is feeling well, has lots of energy and totally enjoyed my son's graduation celebration (more on that below). Except for a little tightness around the kidney, Stephen says that he feels pretty much healed from the surgery. He and Michael (his donor) had the chance to spend more time together last week. They went for walks everyday during Michael's visit. Michael says he is feeling 100% now, which I think is amazing, but he is a big, strong guy who has never had any major health issues. He is hoping to come back again later this summer and to bring my niece with him.
It was a wonderful weekend of celebration at our house. My son graduated from high school on Saturday. My mother was here from California and Michael was here from NY. My husband's mother and brother live about an hour away and they were here too, as well as a few very close friends. All together just 10 of us, but all people who have been important family and friends in my son's life. My husband was given permission to go to the graduation ceremony wearing a mask. We sat in the handicap section, which was right up front and had the most amazing view of everything, including my son getting his diploma :). One of the benefits of wearing a mask is that folks seemed to think Stephen was infectious and kept their distance! And, Stephen has finally learned how to not shake hands.
My biggest goal this weekend was to find ways to make it special for my son, Will, who is my one and only child. With my husband's health failing since last fall, his nephrectomies in March, recuperation and dialysis and then kidney transplant in May, I wasn't able to spend nearly as much time doing "Mom" things for my son this past winter and spring.
With the help of my energetic mom, and Michael and Stephen's wittiness (well after midnight on Friday, when I was still pulling things together), we pulled off a great celebration. Will picked the menu -- pulled pork barbecue, barbecued chicken, Grandma's mac and cheese and apple pie. I added coleslaw and fruit salad to the menu for a little balance. We decorated the house with mementos of Will's childhood and school days. My "too cool for that kind of stuff" 17 year old was noticeably elated all weekend. He sat down and read everything in his first grade scrapbook and the journal I have kept about him (writing only every year or so in recent later years). He hugged me more than once. He told my mother that he loves her. Despite being 6'3" tall and nearly 200 lbs now, he tried on the Pokemon sweater he wore when he was 10. It was very tight and a very funny sight. He was surprised that we still have his baby teeth. We also discovered that we still have a first birthday card sent by my husband's dad (he passed away when Will was 3).
Even though "a transplant is a treatment, not a cure," this transplant is making a huge difference in our lives and is a gift for which I am very thankful.
-
What a wonderful celebration for your family and I'm glad to hear that the transplant is helping Stephen to feel noticeably better. I love it when cool cool teens "forget" all that and reveal the tenderness that we know lives inside them. Your joy and relief at this fortunate turn of events is palpable in your post and you certainly deserve a break from the worry and stress that any chronic illness introduces to our lives.
BTW, even though Toronto is not the most hospitable place in January, or any winter month for that matter, if ever you are up this way, please get in touch and we can do lunch, dinner or even high tea. I saw Stephen on Youtube playing his harp guitar and I'm glad also for the sake of his talent that he's feeling better.
-
What a wonderful celebration for your family and I'm glad to hear that the transplant is helping Stephen to feel noticeably better. I love it when cool cool teens "forget" all that and reveal the tenderness that we know lives inside them. Your joy and relief at this fortunate turn of events is palpable in your post and you certainly deserve a break from the worry and stress that any chronic illness introduces to our lives.
BTW, even though Toronto is not the most hospitable place in January, or any winter month for that matter, if ever you are up this way, please get in touch and we can do lunch, dinner or even high tea. I saw Stephen on Youtube playing his harp guitar and I'm glad also for the sake of his talent that he's feeling better.
If I end up heading to Toronto with Stephen, I will definitely let you know that we are coming your way!
-
Too cool. Isn't is great when the kids grow up and graduate!
-
Your son sounds wonderful. I wish him well in his future endeavors. I have a 19 yr old 6'4'' 180 pound son myself who graduated from High School last June, so I know
how proud you must be feeling. (I also have a 17 yr old daughter). Fortunately with your husband's transplant, your family should have many more wonderful years of
joy together.
-
:yahoo; So happy for ALL of you
-
Just read this thread, and wanted to say congrats. :grouphug;
-
Here's a little update on my husband's post-transplant progress. Seems that late last week and this week the kidney is really starting to do its job on the blood pressure (5th week post transplant). This past weekend my husband's diastolic reading was in the low 60s, with systolic in the low 100s. After 30 years of high blood pressure, low is nice, but not being dizzy, which is what I thought when he stood up too quickly and looked like he would faint. With doc's approval he was able to cut out one of the blood pressure meds altogether and is dropping back on a second. He is still taking a lot more now than he was a few years ago, so he is hoping the trend will continue. 8)
-
6 weeks! Stephen had to remind me again that it's 6 weeks since the transplant. He came in from hanging a new screen door on the porch. Aside from the non-stop snacking and the scheduled meds, there are days that I can almost forget that he had a transplant.
-
Just makes my heart sing I tell you. :cuddle;
-
There's joy in giving and joy in receiving - the donor is on the right and the recipient is on the left. These photos makes my heart sing!
-
:thumbup; Great picture!
-
:clap; It makes my heart sing too and I only know Michael and Stephen through you. :guitar: (That's my singin' heart icon)
-
They both look so happy and healthy.
-
I love those photos! They both look great!
-
This is week 7 -
All is well. Stephen had a appointment today with his nephrologist. His creatinine has fluctuated between .7 and .9 since the transplant. Doesn't seem to be a pattern. His phosphorus is now within range and magnesium is climbing, but still a little low. His blood pressure continues to drop and, as a result, he has been dropping blood pressure meds. The doc said that he wants the blood pressure above 120/70 to ensure that the kidney is properly perfused. The prograf dose was lowered this week based on lab results and he is on a new prednisone taper. The lab report indicates that the tacrolimus (prograf) should be between 3.0 and 8.0 ng/mL at two weeks or more after transplant. His concentration was 10.5 this past week. He remains a bit anemic, as he has been since dialysis started. Blood sugar is fine. He gained about 13 pounds since the transplant, but so far that's fine because he lost quite a bit of weight after the nephrectomies (March) and while he was on dialysis.
I don't think I ever listed his starting med dosages, so I'll give them now for the record:
immediately after transplant (end of week 1):
prograf - 5 mg am, 5 mg pm
cellcept - 1000 mg am, 1000 mg pm
prednisone - 30 mg am, 20 mg pm (tapered to 20 mg by 6/8)
bactrim - 1 pill M,W,F
Nystatin - swish and swallow 4x a day
Valcyte - 2x 450 mg in am
baby aspiring - 1x day
pepcid - 1 pill am, 1 pill pm
amlodipine (Norvasc) - 10 mg am, 10 mg pm
trandate (Labetolol) 400 mg am, 400 mg noon, 400 mg pm
doxazosin (Cardura) 4 mg am, 4 mg pm
Mag-Ox 800 mg am, 800 mg pm
K Phos Neutral 3 pills am, 3 pills pm
Here's where he is at the end of week 7:
prograf - 4 mg am, 4 mg pm
cellcept - 1000 mg am, 1000 mg pm
prednisone - 17.5 mg am (will taper to 10 mg by 8/1)
bactrim - 1 pill M,W,F until November
Nystatin - finished up 6/5
Valcyte - 2x 450 mg in am (continues until 8/21)
baby aspirin - 1x day
pepcid - 1 pill am, 1 pill pm
amlodipine (Norvasc) - dropped end of June
trandate (Labetolol) 200 mg am, 200 mg pm
doxazosin (Cardura) dropped mid-June
Mag-Ox 800 mg am, 800 mg pm
K Phos Neutral 3 pills am, 3 pills pm
-
So exciting that Stephen will be able to resume touring to play and that things are continuing :guitar: to go from good to better.
-
Yes, and now I am hoping that he will book a job in Toronto, even in the winter, so that I can find you and have tea!
-
Absolutely, that would be fun.
-
A future without blood pressure meds? Stephen is contemplating this possibility in week 11 following his transplant. He's been cutting back for weeks now. His blood pressure has still been falling too low and as a result he is sometimes feeling faint when he gets up too fast from sitting. He's had 3 days with no bp meds at all and his numbers look good. If this holds, it will be the first time in over 25 years that he is not taking blood pressure meds.
-
It's a great feeling to get RID of meds instead of constantly adding them. Since starting dialysis again I've dropped four of five BP meds and may have to lose or cut the final one two. It's quite incredible to me the things that can become causes for celebration, depending on one's circumstances. I send Stephen a victorious high-five.
-
Today is Stephen's 3 month anniversary with his new kidney. :flower;
-
Congratulations. He must be so happy.
-
Today is Stephen's 3 month anniversary with his new kidney. :flower;
:cheer: Yay kidney! :cheer:
I hope he feels good!
-
:2thumbsup; :clap; :2thumbsup;
-
It is great to hear he is doing so well. It gives great hope to others who are waiting. Sounds like you all have been enjoying summer and the new kidney. The pictures of the guys are wonderful! What great smiles they have. I have been enjoying reading your posts of the transplant journey.
-
I passed on the well wishes and they brought a big smile to his face. Thank you!
I wanted to add info on his meds, but had to check with him for the details:
Here's where he is with meds at the 3 month anniversary:
immunosuppressives: prograf - 4 mg 2x day; cellcept - 1000 mg 2x day; prednisone - 10 mg daily
antibacterial, antiviral: bactrim - 1 pill M,W,F until November; Valcyte - stops on 8/21
blood pressure meds: discontinued
other stuff: baby aspirin - 1x day; pepcid - 2x day; Mag-Ox 800 mg 3x day or more; K Phos Neutral 6x day, plus the liquid
His most recent tacrolimus trough value was 6.6 ng/mL
I worry about him going off the Valcyte, especially since he has about 2 weeks of traveling and performing in September. I'll be with him for one of those weeks, so I can quietly keep my eye on him. 8)
-
Maybe I am confused but I thought Valcyte was used to prevent the recipient from getting CMV from the donor. Even though Jenna and her donor tested negative for CMV the transplant team prescribed the Valcyte as a precautionary protocol. Here's what I have read:
Valcyte is indicated for the prevention of cytomegalovirus (CMV) disease in kidney, heart, and kidney-pancreas transplant patients at high risk (Donor CMV seropositive/Recipient CMV seronegative
[D+/R-]).
How is CMV spread?
* Person to person contact (such as, kissing, sexual contact, and getting saliva or urine on your hands and then touching your eyes, or the inside of your nose or mouth)
* Through the breast milk of an infected woman who is breast feeding
* Infected pregnant women can pass the virus to their unborn babies
* Blood transfusions and organ transplantations
CMV is sometimes found in body fluids, including urine, saliva (spit), breast milk, blood, tears, semen, and vaginal fluids. A person can become infected with CMV when they come in contact with infected body fluids. However, people who are CMV-positive (have been infected with CMV sometime in the past) usually do not have virus in these fluids, so the chance of getting a CMV infection from casual contact is very small.
That's from Centers for Disease Control and Prevention. The risk is small, but I know you may still worry. I guess unless he is swapping body fluids, he should do fine.
-
Here's my thinking -- My husband is at risk for CMV because he was negative but his donor was positive. I'm pretty sure I read someplace (here or elsewhere on the web) that the most likely time for CMV to rear it's ugly head, so to speak, is within the first few months after discontinuing the Valcyte. Then I started reading in a few different places that there might be an elevated chance of CMV infections in those having monoclonal antibody therapy, which he had. So, I have it in my head that he might be at a little higher risk for CMV infection over the next few months. The fact that he is going to start traveling and might chose to ignore symptoms if it means canceling a show is no comfort!
-
Yes, I didn't realize his donor was positive, so I can understand your concern. I hope he doesn't have any problems.
CMV is one of the viral infections that occur most frequently in transplant patients. The risk of CMV is highest in the first months after transplantation. Signs include fatigue, high temperature, aching joints, headaches, visual disturbances, and pneumonia. Treatment may include hospitalization.
-
With a little prodding from one of you (you know who you are!), I am delivering a report on Stephen's first concert tour since his transplant. We arrived home in the middle of the night last night after a long drive home from Memphis, and I can assure you that I am more tired right now than my husband. Now, how's that for a change?
We started out road trip early last week with a house concert in Knoxville, TN, followed by a music festival in Kansas and finally a concert in Memphis, TN. The house concert was hosted by fans in Knoxville. While you may never have heard of them before, house concerts are a great concept. Folks are essentially acting as "grassroots" patrons of the arts by getting together to bring performers to their homes. Typically someone offers to open their home and then twenty to maybe forty people split the cost of hiring the performer on an "off" travel night (actually it's a "suggested donation" type thing). Everyone brings food for a potluck dinner and the hosts also provide lodging (like a B&B) for the performer (and in this case, his wife, too). Stephen's Knoxville concert was given by the light of the full moon on our host's back deck. The food was great and the accommodations were very comfortable.
Then we headed for the festival through the foothills of the Ozarks, stopping for some excellent barbecue and a little roadside fossil hunting (one of my passions) along the way. We first went to the Walnut Valley Festival in Winfield Kansas in 1984 so that Stephen could compete in the National Flatpicking Championship. Flatpicking is a style of guitar playing - using a pick and playing fast (think bluegrass style). He came in second that year, which was a total shock and then won first in 1987. He took third place in the International Fingerstyle Guitar Championship a few years later, and is still the only person to ever place in the top three in both championsips. As you might imagine, we feel a certain bond with this festival.
They started hiring Stephen as a performer in the late 80s and he has been invited back many years since then. It's a big festival that features many of the finest acoustic instrumentalists, especially guitarists, as well as folk singers and some great bands - blue grass, new grass, and more. Something like 15,000 people show up in this little town every year for a long weekend of music and camaraderie. The festival goers camp around the outskirts of the festival and come into the central fairgrounds for the shows which take place on four different stages. We've made a lot of friends over the years.
The festival organizers are really great and we always feel like part of a family. This year they put us up in a wonderful (quiet) bed and breakfast so that we didn't have to stay in the hotel with a gazillion other people. The house is on a hill overlooking farmland and prairie. We had fantastic gourmet breakfasts every day, wine and cheese one evening, hot chocolate and homemade cookies one night, and s'mores another night. But the best of all was the last night, when our Italian guitar player friend cooked dinner at the B&B for a small group of friends. We feasted on delicious cheeses, wonderful bruschetta and pasta with porcini mushroom sauce. Did I mention that there was wine? The next morning when we left the B&B, the sun was rising golden red over the prairie. It was beautiful.
Stephen had seven shows (1 hour each) at the festival and was in peak performance shape for this very special "come back" tour. Of course, he's had months of practice since the transplant! This was his first road trip since last October, and by all measures it was a huge success. I earned my keep by selling CDs after the shows :) and that gave me a chance to speak with many of his fans. They have been an incredibly supportive group over the last year and continue to show their support by buying cds, helping to make venue contacts or by hosting house concerts in their areas. It really is a very special community. Backstage at the festival I also had a chance to meet some of the younger musicians who are destined for big things in their careers.
Stephen had phenomenal energy for someone only four months post-transplant. Although he is finding that he is not getting his expected adrenaline rush just before going on stage, that is about the only negative. Otherwise he is full of energy and stamina and feeling much better than he has for years. The organizers scheduled all of his shows for daytime and early evening and that let us get to bed early most nights. Everyone was really careful about asking for permission to give him a hug. Folks who were sick knew that they needed to keep their distance. We washed our hands a lot. We were invited to rest in the air conditioned trailer (for the head honchos) between shows. I am hoping that the good karma coming from being at the festival with so many friends and supporters far outweighed any risks of contact with so many different people.
It also turned out that one of the festival goers and a longtime fan of Stephen's had a kidney transplant 5 years ago. We had a chance to talk with George and his wife Paula about their experiences and it sounded like George is doing very well. Paula was his donor and his deep love and admiration for her was readily apparent.
We finished up the trip with a concert in Germantown, TN which is near Memphis. It was Stephen's first concert in the Memphis area and we will definitely go back. We had great hosts there too.
In an wonderful week full of great memories, one of the highlights of the trip for me was meeting Anna. I had tears in my eyes the moment I saw her and the joy of meeting her and learning that she is as wonderful as I expected will stay in my heart. I hope that traveling with Stephen or for my job will give me many more opportunities to visit with my IHD family in the coming years.
:guitar:
-
Thanks so much for a great update. I particularly liked the idea of the house concert on the back deck with the moon. Well of course I liked the description of the food too. So glad it all went well and that Stephen is back doing his thing. :guitar:
-
That sounds like a great experience - thank you for telling it so well! :2thumbsup;
-
pelagia, Thank you for the experience. I worried about Stephen while you were gone (call it mother hen). I'm so happy to hear that your lives are getting more back to normal. Now, if we could just get that house done for you. I truly look forward to our paths crossing. :cuddle;
-
When my wife had our child, it was by c-section. She's always said that she didn't have her "birth experience" like she wanted.
My kidney was from a cadaver flown from GA to VA, so it was a little show to start to function. I was swollen for almost 2 weeks.
I told her I didn't have the "transplant experience" I wanted... but I'm glad yours worked out so well!
-
On this evening six months ago my sister and I were having dinner after leaving our husbands at the hospital the night before my husband's transplant. My sister's husband Michael gave my husband the incredible gift of a kidney.
Tonight my husband is on his way to Michigan where he will perform a couple of guitar concerts and teach a workshop this weekend.
All is well! He has had no significant complications related to the transplant. He has a little moon face and had a lowish WBC count for a couple of weeks last month, but they lowered his prograf and the WBC came back into range. Other than that, he's going strong. He's still off the blood pressure meds, but had to add a statin because his cholesterol was creeping up a bit. I continue to worry about CMV, but now that he's made it to 3 months with no Valcyte, maybe I should worry less. He doesn't spend any time worrying!
Oh, and his creatinine is holding at around 0.9 these days.
Here's his med list at the 6 month anniversary:
immunosuppressives: prograf - 3 mg 2x day; cellcept - 750 mg 2x day; prednisone - 10 mg daily (he's hoping they will cut this to 5 mg/day next week and that maybe the moon face will go away, and of course it would lower his risk for any of those nasty side effects)
antibacterial: bactrim - finished this week
antiviral: Valcyte - finished on 8/21
blood pressure meds: discontinued before the 3 month mark
pravastatin: 20 mg daily
other stuff: baby aspirin - 1x day; pepcid - 2x day; Mag-Ox 400 mg 4x day; K Phos Neutral 6 tabs a day
So, celebrate a little with us this weekend if you have a chance. :beer1;
:guitar:
-
I'll definitely drink a toast (might be tea LOL) to Stephen's successful transplant this weekend. There's nothing like the relief that comes from time passing and the transplant hanging in. :flower; :wine; :flower;
-
Beautiful. :thumbup; So glad to hear that things are going well. :clap;
-
:2thumbsup;
-
I just finally talked to Michael and it looks like he is going to be able to come to Virginia (from NY) for a visit during the Christmas break. :yahoo; He said he feels great, no problems at all relating to the kidney donation. :)
The sad news is that he and my sister are probably going through with their divorce. They have been separated for quite some time (more than a year now). I don't think I've ever mentioned that before here at IHD because it's always been very up and down with them and it's difficult for me to think about. They've been together since they were 16, which makes it over 25 years. They have a wonderful daughter who will soon be 11. They just don't seem to be able to make it work even though they still love each other. He is an independent contractor and is now thinking he will need to find something else so that he will have access to reasonably priced health insurance after the divorce (my sister is a school administrator and has the health insurance). Thank goodness we took out the Medicare supplemental insurance (part B?) that covers him for anything related to the kidney donation. It would be too much to deal with if he faced any medical bills that he couldn't cover because of his generosity to our family.
-
pelagia, so happy to hear that Stephen is doing so well. I hope by reducing some of the medications he is on, things will continue to improve. :flower; I'm sorry to hear about your sister and Michael not being able to work things out. Who knows, maybe they will make better friends then spouse's. How's your house coming? :cuddle;
-
Best wishes to many more good reports on Stephen! :clap;
Sorry about the divorce. My sister is in the same situation, long term marriage, just no way to continue being married but she and my BIL will always have love for each other. And he will always be my bro. Michael is a very special guy and I imagine this is tough for all of you. :cuddle;
-
Stephen just headed out the door for Texas. He'll be performing guitar concerts in Tomball on January 10 and San Antonio on January 11. Tomorrow he is giving a workshop in Houston for high school kids in the district's music program. This marks the beginning of an incredibly busy year for him. I am afraid to count the days on the calendar, but I know from what I've looked at so far that he will be on the road for more than a third of 2009, including some trips that are 3-4 weeks long. This is how life once was for us, and he can only do it again because he is so healthy after the transplant. For that I am forever grateful. Still, I have certainly grown accustomed to having him around the house this past year and a half :guitar:
Stephen recently wrote a piece for the Walnut Valley Music Festival (Winfield Kansas) newsletter, which was published in December. If you've been reading this thread, you may remember that it was his first venture back "on the road" as a guitar player following the transplant. The festival almost didn't go off because of a hurricane that flooded the midwest. The festival folks have posted the entire piece on their website :) as well, so I thought I would post a little bit of it here. I've excerpted mostly the part about his experiences the after effects of transplantation. Those who know Stephen know that he deals with most trials in life with humor. I think part of that comes through below.
"Winfield 2008:
I suppose many things can be said about this year’s Festival, the 37th annual occasion of this event that has become a tradition for so many of us. Though it could be said that there are thousands of different perceptions in any given year (because there are thousands of us that descend upon the place) – there is certainly enough about the Festival that makes it a richly shared experience.
The Festival is something that binds us together, and in an ever more rapidly paced and too often fragmented world, wouldn’t you agree that those things that bind us together just a little bit more - are precious indeed? Good, I thought so…
I have been to most of the Festivals since 1983, when I first attended. Not all of them, but most. When my son was born in August of 1990, I couldn’t very well take off for Kansas a month later. And I’ve missed a couple of other years here and there. I almost missed 2001, but finally made it to Stage I just about midnight on Friday, a moment I will never forget. As I write this, a memory just popped into my head of the flight out of Norfolk that morning. There were just a couple of passengers on the plane, as I recall, and we were moved into first class. And I remember the flight attendant saying something like “home of the brave – yeah, right”.
I wasn’t in attendance last year, so 2008 was a return year for me.
A lot had happened to me since I was last in this place. In March of this year my kidneys were removed as the result of a degenerative disease. I went on dialysis for a couple of months and in May I received a kidney transplant. In case you’re thinking this sounds like fun, I don’t recommend any of this for recreational purposes. It’s not nearly as much fun as you might think, so you really just want to do these things if they are necessary, trust me…
In my case, they were necessary. And as un-fun as it all was, the end result is that I am a healthier person that I have been in a long time, something for which I am profoundly grateful. November 14 marked six months since my transplant.
Let me also say a heartfelt thanks to all of you out there (and there were many) that sent good healing wishes in my direction during that time. Thank you very, very much!
Returning to Winfield after all of this had other layers of meaning for me as well. I really didn’t play guitar for a few months during the height of these medical adventures. It took me a while to get my chops back to where I could actually play with some degree of finesse again. I played some shows with Tommy Emmanuel 3 weeks after my transplant (don’t tell my doctors) and while I made it through reasonably well, it was clear to me that my body’s chemistry had changed. While that was a really good thing for my physical health, there were other, somewhat worrisome implications for my musical well-being. For one thing, I realized that I wasn’t getting adrenalin into my system. Whatever the reason, my usual pre-show nervous energy wasn’t getting converted into useful stage performance energy as I was used to. Though I would be apparently well warmed up backstage before I would go on, once I started to play, it was as if my hands had somehow turned into claws. This was what I was dealing with all summer as I started to play a few gigs again locally in Virginia - and what I was worrying about as I headed west to Winfield. I played a show in Knoxville, Tennessee on my way and that went great. Of course, I played a 4 hour show and was truly warmed up by the time I stopped.
I experienced some minor issues at the Festival, which made the beginnings of some of my sets a little stiff. But fortunately, my fingers always gradually came alive and though even if I had the ability to go back and re-do some of my performances, there are some I wouldn’t change a note of. My Saturday night set on Stage 2 was a particular blast...."
If you want to read the entire piece or learn more about this amazingly fun festival, link to:
http://www.wvfest.com/
You have to use the link "Stephen Bennett's view from the stage" under the photo to get to the newsletter piece.
:guitar:
-
That's great, thanks for posting it! I'd love to hear him play someday! :beer1;
-
Wouldn't it be nice if we could find a way to link to his guitar playing so we could hear it.
I'm so glad to know he is doing well.
-
http://www.youtube.com/watch?v=GWCHGxHiwrc
Here he is, playing and singing "What a wonderful World".
-
Makes me think of our Susie. :cuddle;
-
Thats awesome best wishes :clap;
-
I kind of like this one too. This was shot during his last overseas trip (to Germany) before dialysis and transplant.
http://www.youtube.com/watch?v=pHnxBODb-C8&feature=related
-
:clap; :guitar: :clap;
-
Congratulations!!!! :guitar: :bestwishes; :bandance;
-
:guitar: Love it!
-
Nice. Thank you.
-
Okay, here's one more fun one - a piece he wrote for our cats. It's filmed at a place called Kulak's Woodshed in North Hollywood, CA. It was kind of cool because they streamed the show live over the web and folks from all around the country were watching and sending in requests. This is also filmed during Stephen's long hair phase. It was kind of a down time in life for him as he began to realize that he was on the way to parting with his kidneys for real. Luckily I got him to pull the hair back. There are some pieces up on youtube where he is looking pretty ragged.
http://www.youtube.com/watch?v=1KQKeWa-XNE
Generally, I would have to say that it's more fun to be at a show then it is to watch one of these clips. During the shows he is witty and engaging (I sound objective, don't I? :rofl;), but the clips mostly catch him while he is playing and concentrating! :guitar:
-
:secret; It was 9 months on Valentines Day! Stephen leaves on a three week trip tomorrow. He's going to British Columbia, Washington, Oregon and California. Just like the good ole days... (thank you Michael, thank you kidney donors everywhere!) :guitar:
-
Kidneyversaries are the best!!!
-
We went to dinner tonight to celebrate Stephen's one year kidneyversary. It's an incredible feeling to be at this point. Humbling. We remain forever grateful to Michael for giving us this gift.
Stephen has had few problems since the transplant. The only real incident has been this week. He just returned home on Monday night from a 3 week trip to Europe. He was very tired and a bit ragged looking when I picked him up at the airport. I think that even he will admit that it took a bit out of him (four countries and more than a dozen concerts in 3 weeks). He managed to catch a cold, had a little eye infection and then a bit of a fever. The fever or the eye would be enough to worry me, but not him (he never worries). I was on IHD right away searching "cold" and "infection". Reading W&W's post about Len's first cold and fever on his one year kidneyversary and his course of antibiotics and Karol's post about Jenna having a cold and a slight fever, and knowing that they both got better quickly :) eased my worries... Stephen's been on Bactrim for a couple of days, his eye has cleared, the fever has subsided and he's feeling fine.
He spoke to Michael this morning and they were laughing up a storm about something, as always. Michael says he's feeling no effects of the donation at all.
I guess we never know what life has in store for us. For now my husband is focusing on doing what the transplant clinic told him is #1 when you get a transplant - live your life! Next month we're going to southern Utah and the Grand Canyon for a week. It's something we've always wanted to do and I am really looking forward to it.
I really appreciate my IHD friends for being with us on the journey this past year. You understand in a way that few others can. :cuddle;
******
I haven't been that good about keeping track of Stephen's creatinine and meds, except here on IHD, so just for the record:
creatinine - 1.0
prograf - 3 mg am, 3 mg pm
cellcept - 750 mg am, 750 mg pm
prednisone - 10 mg am/7.5 mg am; on alternate days
baby aspirin - 1x day
pepcid - 1 am, 1 pm
Labetalol - 200 mg am, 200 mg pm
Mag-Ox 4x a day
K Phos Neutral 4x a day
Zetia 5 mg am
Pravastatin 20 mg pm
-
:yahoo; Great report! I am so happy to hear Stephen is doing better. That's quite an accomplishment to travel and do so many concerts! Best wishes to Stephen and Michael on the kidneyversary - and to you too pelagia - caregiver extraordinaire!
:bandance;
-
:flower; :flower; :flower;
Terrific that Stephen's doing so well. And that he has you to worry about the things he doesn't fret over.
-
:clap;
-
:2thumbsup; Glad to hear he's doing well.
-
:flower; Yay!
-
Happy Kidneyversary...and many, many more! :cheer:
-
:beer1;
-
:bandance; :bandance; :bandance; :flower;
-
:bandance; :bandance; :bandance; :bandance; :bandance;
-
thank you all :guitar:
-
:flower;