Back in the swing

[McKay]

Hi all!  6 weeks ago, in late Feb., when hub was 6 weeks post-LDNR-transplant, my wonderful 90 yr old mom passed away.  She was fully independent until two days before she died.  I believe in my heart she stayed strong for us until she knew we were going to be OK.  She was SO concerned about Bill and me,  and SO uplifted by seeing ten people step up for him, and by the ONE who donated!  What a beautiful thing for a 90 year old to experience before she left this earth.  Losing her was so hard as we were so close, but she was tired and ready.  And losing her after the worst year of our lives wasn't easy either - I was tired but NOT ready.   But we are coping, have already traveled 800 miles away to have her service, got the house ready, and sold it immediately.  This was Bill's first long road trip and he did fine.  Now we are back, recovering, and trying to focus on this second chance we have been given, which Mom was so happy about!

Bill has had more 'little' issues - but overall doing well.  NO rejection,  but some increased pain in the incision area.  He was told that was likely due to his previous hernia surgery/mesh 5 yrs ago.  We, and the surgeon believe nerves are coming alive in the area, therefore he's feeling more discomfort - things aren't so numb anymore.  But that is getting better, too.  Mainly, the side effects of the Prograf and Myfortic are the bigger problems.  He'll have a few good days,  then a lousy one.  Tremors, jitters, nausea, and some anxiety.  Prograf levels seem OK but will be anxious for next labs/visit.  We think they'll release him to his old neph soon.  Will labs stay monthly for a year?  Any tips on the side-effects?  He is down to 5mg of Prednisone now, thankfully.  He has increased his activity level a lot since the pain is better - walking 3+ miles at a time.  Having to increase hydration as a result, living at 8000 ft.  Trying to drink 3+ liters H2O daily.  So grateful, yet still trying to figure out this new life on new meds.  Unfortunately Dear Donor had an issue with hives post-nephrectomy, but they decided it was due to narcotics in hospital, and have now treated aggressively with success.....after 2 months of dealing with it!  Otherwise life is great for her as she approaches her wedding!  So, a wedding and a funeral, for two people dearest to us, within a very short time.  Best wishes all, and thanks for being here.  McKay

[MooseMom]

The first year post tx are the hardest when it comes to getting doses right.  Do not be alarmed if prograf trough numbers go all over the place.  Mine sure did!

Tremors/jitters/anxiety are extremely common.  I still have those effects, and I'm almost 3 years out.  I notice they are worse if I'm tired or hungry, especially hungry!!  The thing that helps me the most is activity that requires lots of movement.  I walk every day, too, and that is the once thing that helps me the most.  Anything, actually, that gets me outdoors is a huge help!  Sometimes I feel anxious for no reason, and then I think, "Oh, it's just the tac," and I cease thinking about it.  I'd rather have some jitters than have to be on dialysis.  I'm too grateful to let a few jitters bother me.

Monthly labs will continue for the rest of the life of the new kidney.

I'm sorry to hear about your mother but am very happy that she left this earth with the knowledge that her family is safer. 

[jeannea]

Every center seems to be different for labs. Mine does twice a week for 6 months, once a week for 6 months, then monthly forever. I'm back on once a week because of other issues. Lab results will show a problem before he feels bad so the monthly draws have to continue.

It's good that he's feeling well. The first year has ups and downs but things sound good for him.

[McKay]

Thank you much.  This support is SO welcomed! 

[McKay]

Hi All, had another trx. clinic visit - labs excellent once again, so thankful.  Groin pain better, did not have to start Neurontin and has not needed the heavier hitting pain meds.  Also, his tremors/jitters have been difficult, and they reduced Prograf dosage to 1 in the morning, and 2 at night.  Interestingly, his trough level came in high later the same day, so that justified the decision even more.    So, things are falling into place better.  At about 15 wks, they have now released him to his old neph.  But with the tac reduction, he needs tac level drawn again tomorrow.  Are many on only 3 caps/day?  He is happy for the reduction, but worried about going too low, has to trust the docs wouldn't jeopardize the new kidney.

Attended the wedding of Bill's living donor - what a beautiful but highly emotional day!  We are so blessed!

[cattlekid]

I am two years post transplant and I am only on 3 mg of tac per day at this point.  My tac level keeps coming back high and the tx center keeps decreasing it.  I'm not too worried because I know that too much tac is just as bad as too little.

But with the tac reduction, he needs tac level drawn again tomorrow.  Are many on only 3 caps/day?  He is happy for the reduction, but worried about going too low, has to trust the docs wouldn't jeopardize the new kidney.

[jeannea]

I'm currently on 3.5 mg twice a day. I've never been down as low as you're saying. But the docs won't do anything to cause problems. Just keep getting the level checked.

[McKay]

Hello everyone!  Well, today marks 6 months since Bill's transplant!  Had a wonderful celebration dinner with donor last night, and return trx. clinic visit this morning.  Labs were excellent,  creatinine has settled in around 1.3 and holding steady.  Other results great, too.  Tac level is holding between 5-8 as desired, today 7.8 and he is down to one capsule morning and night.  His tremors are all but gone, as a result.  Myfortic dose stays the same, and prednisone 5mg daily forever.  Unfortunately life continues to bring other medical issues - back problems which restrict activity, and now he is scheduled for cardiac ablation in a few weeks, due to excessive Premature Ventricular Contractions.  He's had these for a long time but now this new powerhouse of a kidney has lowered his b/p, and pulse, almost too much!  He feels pretty draggy with a pulse only in the 30's.  He is actually looking forward to the procedure.  I can't say I feel the same way but want to see him have more energy and less cardiac concern.  Another surprise was food poisoning last week - oh boy.  With the symptoms, we were worried it could be rejection, but the diarrhea, low grade fever and headache went away after 24 hours.  Not to mention the 'strange tasting' chicken panini he ate the night before the symptoms started.  We were very relieved to get such good lab results today, with that underlying worry.  So now, back issues and ablation are on the menu.  He has been discouraged mostly with the back problems.   Some bouts of nausea remain with the myfortic,  but he is pushing though.  We are still in shock and awe over this amazing gift.  Life is good!  Thanks for your support!

[MooseMom]

Thanks so much for this great news!

[McKay]

Thanks for all the support!  I certainly read and value everyone's posts, and I hope our info helps someone as well.  'We' are now past 7 months, and monthly labs were once again excellent.  Creatinine was the lowest ever, 1.1, BUN 20, GFR > 60, Potassium 3.9.  I do believe he may have been slightly overhydrated, as he drank over 3L H2O the day before labs, but still love seeing those numbers.  Tac level is 5.5 even on 1.5 mg daily.  Side-effects are very minimal now! 
The outpatient cardiac ablation went great 2.5 weeks ago, and his resting pulse is now normal - 64/regular instead of 32/irregular.  It is incredible what they can do!  As a result, his energy level is greatly improved, his back feels better, and I'm sure Leftie is happy to have better perfusion, too.  This little kidney is incredible!  Bill is feeling better and better every day, walking/hiking 2-4 miles almost every day, encouraged to finally be reaping the physical benefits of this amazing transplant.  Dear Donor is doing great, which is the most important progress report of all! 

[McKay]

Hi all!  Just checking in to see if any post-transplanters have graduated to labs every two months instead of one?  Bill saw his old neph last week at 10 months -  labs great again with creatinine 1.1 and everything else within normal limits, and other than having gained weight, all is great.  B/P is still holding without meds, tac level holding around 5 on only 1.5 mg/day.  Bill is very happy to go to every two months but it makes me nervous.  He has his one-year transplant center visit in January, so that will be the first two-month span, with very comprehensive labs etc planned.  Any opinions to share?  He's doing great - still some discomfort at site likely scar tissue aggravated by to hernia mesh.  A little nausea from myfortic, but nothing excessive.  Dear Donor is doing great - best news of all!  I, as wife and caregiver, am trying to push myself to relax, to trust all is well after so many years of rising stress.  Things are more calm now, so I am trying hard to take a deep breath.....thanks for your input! 

[PrimeTimer]

That is good news...always good for the rest of us to hear it!

[SooMK]

Great news. I'm a year and a half out and still have labs every month. My doc (I'm still seeing the clinic neph since I never had a local neph) says I'll go to three month labs after my second kidney-versary. Bill sounds like he's doing great and it's wonderful to hear you are getting time to relax. I also had a unrelated living donor and they are the true heroes.

[PrimeTimer]

Congrats and best wishes to you "post-transplant" folks! Hope things continue to look up for all of you! Your stories and how you manage things are very interesting to read, often heartwarming. I read because every little bit helps. 

[Deanne]

Hi all!  Just checking in to see if any post-transplanters have graduated to labs every two months instead of one?   

I graduated to every three months at 20 months post-transplant. I was monthly until then.

[cattlekid]

2 and a half years post transplant for me and I am still at monthly labs.  My tacro level started bouncing around the last couple of months so I like that I am still on monthly labs so we can adjust as needed.

Hi all!  Just checking in to see if any post-transplanters have graduated to labs every two months instead of one?

[Charlie B53]

As usual, I am late to this thread.  I don't read ALL the boards, so I am very slow to get around.

Sorry to learn of your Mother's passing.  I lost my Mom 7 years ago.  I still think of her daily.  We are NEVER really ready to let them go. Even if they may be having a difficult time we are hopefull that they will mend and stay with us for some time yet.  So it is a very hard shock when one passes within such a short time.  You are blessed to coppe with all the stresses in your lives in such a short time. 

I am amazed it your Husbands strength.  THREE MILES!!!!   I do well just to get into WalMart, a lap around to find what I am after and back to the car.  He's tough, and determination is essential to continued progress.  I don't doubt that he will continue to do well.

I am also amazed at so many others that are doing so well after transplant.  I removed myself from the list after a bad reaction to one of the anti-rejection meds.  Made me so sick, tired, and sore, that I actually thought I was going to die within the next few days.  Stopped taking the med and within the week began to improve.  Doing very well on PD, always good labs.  My phobia of needles prevents any thought of going on Hemo.  So keeping my fingers crossed that everything just stays stable and I should be good for a long while to come.

Keep taking care all,

Charlie B