Successful Transplant! - One year later!

[pelagia]

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!

[monrein]

Absolutely, that would be fun.

[pelagia]

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.

[monrein]

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.

[pelagia]

Today is Stephen's 3 month anniversary with his new kidney. 

[Sunny]

Congratulations. He must be so happy.

[okarol]

Today is Stephen's 3 month anniversary with his new kidney. 

  Yay kidney! 

I hope he feels good!

[monrein]

 

[paris]

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.

[pelagia]

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. 

[okarol]

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.

[pelagia]

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!

[okarol]

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.

[pelagia]

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.

 

[monrein]

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.   

[okarol]

That sounds like a great experience - thank you for telling it so well!  

[willieandwinnie]

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. 

[American Airman]

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!

[pelagia]

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. 

 

[monrein]

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.   

[xtrememoosetrax]

 Beautiful.  So glad to hear that things are going well.

[MIbarra]

 

[pelagia]

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.    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.

[willieandwinnie]

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.  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? 

[okarol]

Best wishes to many more good reports on Stephen! 

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.