Successful Transplant! - One year later!

[okarol]

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! 

[pelagia]

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.

[okarol]

That's great! And I love your avatar photo - you guys look wonderful!

[xtrememoosetrax]

Today is the one month anniversary of my husband's kidney transplant .  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?

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.

[willieandwinnie]

Hi Linda,  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

[spacezombie]

I'm a little late but I just wanted to say CONGRATS! Having a new kidney is the greatest!

[pelagia]

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.

[Sunny]

A very happy story.
I am so glad your husband is doing well.

[pelagia]

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.

[monrein]

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.

[pelagia]

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!

[kitkatz]

Too cool. Isn't is great when the kids grow up and graduate! 

[Sunny]

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.

[lola]

  So happy for ALL of you

[angela515]

Just read this thread, and wanted to say congrats. 

[pelagia]

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.

[pelagia]

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. 

[monrein]

Just makes my heart sing I tell you.

[pelagia]

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!

[MIbarra]

   Great picture!

[monrein]

   It makes my heart sing too and I only know Michael and Stephen through you.     (That's my singin' heart icon)

[Sunny]

They both look so happy and healthy.

[okarol]

I love those photos! They both look great!

[pelagia]

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

[monrein]

So exciting that Stephen will be able to resume touring to play and that things are continuing to go from good to better.