Hub's living donor transplant scheduled for 1/6/15

[McKay]

Hi all, found you earlier this year as our transplant journey began, and have appreciated you so much!  I'm the RN/researcher/writer in the family,  Here's our story.  Husband's slow creatinine rise since age 50 led to biopsy and dx. of IgAN.  He's 64 now, progressed to Stage 5 this year, was evaluated 6/11/14 for pre-emptive transplant,  listed 9/2/14....Type O, can be 5 yr. wait.  10 of us were then tested a few at a time, as potential living donors.  2  O's in their 60's were declined due to being on 2 or 3  b/p meds.  I turned out to be A1 and so did our 2 children and 2 others...not A2 which might have worked.  Son was fully tested in hopes of being a paired donor but renal scan showed 2 arteries to each kidney - fine for a direct donation but not pairing.  3 more O's came forward.  One was declined due to height difference, but still possible for pairing if needed. The two other O friends remained,  with one moving faster through the process and was approved mid November as a 3/6 match, zero antibodies like my hub!   Other person a match too but hasn't gone through the full day testing process, they asked her to stay 'on standby' in case anything falls through.  So far so good,  had pre-op days earlier this week.  Hub so ready,  fully functional but feeling worse by the day.  He is overwhelmed by this donor process, as a strong man it's hard to accept this amazing gift especially from the 41 yr old daughter of dear old friends.  Such an amazing process, so many emotions including heartbreak over the conspicuous absence of hub's three sisters.  When trp. team asks if siblings are a possibility,  you're faced with the reality they haven't even sent a get well card, much less offered a kidney.  You truly see deep into the hearts of people during this journey....good and not-so-good.  And so, under 7 months since hub's first eval,  we are blessed by this incredible living donor.  This joy greatly overshadows the pain family has inflicted.  Consents are signed and we travel 1.5 hrs from home on Monday to be ready for Tues. transplant.  A couple weeks of hotel time ahead for us.  Nervous but ready for this next chapter.  Another miracle is scheduled for The Epiphany!  Prayers please!  Thanks for being here.  I'll be back.

[cassandra]

Wow, lots and lots of luck, and love for  you, your husband and his donor!!

                

[SooMK]

Hope this all goes smoothly. Being a recipient is so very humbling. Your husband is so fortunate to have had so many willing offers. Please let us know how this goes. My thoughts are with you, your husband and your family. Welcome to IHD.

[Jean]

Lots of blessings for you and I sincerely hope everything goes well for you. This is def an eye opening experience. I asked my only sibling if he wanted to donate a kidney to me, even tho I knew I wouldnt want it. After all, he is now 87 years old. But, anyways, he said no, why would I want to do that? I might need it. So, count your blessings that there are other more caring people out there. Best of Luck to you and DH.

[McKay]

Thank you all so very much!  Your kind responses mean so much - because you truly understand - you truly care.  BTW, my hub Bill's GFR is at 11.  Creat 5.1, BUN 85.   He was just below the 20 GFR requirement when the first eval appt. was made,  but he's had a rapid decline since.  Still has an appetite but increasing nausea,  little fluid retention, tremendous fatigue, itching, aching, etc.  I believe he'd soon be headed for D if we didn't have this incredible donor on board.  A bad knee hasn't made this any easier for him.  It feels like I'm giving TMI but I scoured many posts for this type info,  for 'comparisons', you know.   I look forward to coming back again when I'm able.  Is it strange to say you already feel more like family than my three sisters-in-law do?  Well, it's true.  Blessings to all on your own journeys.

[McKay]

Hi all it is late and I need to sleep but wanted to update you!  The transplant went smoothly for both!  Surgery was delayed 1.5 hrs due to emergency liver trp. ahead of us.  Also thought we'd be bumped because of yet another deceased donor coming in but they decided to do that one after 'ours'.  Our donor did great, a very 'routine' nephrectomy.  Bill's previous hernia mesh was right where they wanted to put the kidney,  but they worked it out.  Surgeon said Bill could have additional pain but a nerve block could help if it doesn't go away.  Once out of recovery,  we were all disappointed both of them had roommates - not ideal.  Bill's roommate was a general surgery pt. who had a colostomy!!!  As a nurse I couldn't believe this!  They were very nice but still.  Our donor had a mentally ill/homeless roommate with an obstruction, who complained that our donor was getting preferential treatment.  As if she didn't deserve it!!  Finally our two were transferred to private rooms,  what a difference.  Both have a good amt. of pain but are walking and progressing each time.  Bill's creatinine went from 5.1 to 2.3 in less than 24 hrs., BUN from 85 to 40.  Unbelievable!!!   It is truly a miracle.  Bumpy roads ahead with meds, etc., but we pray our donor's roads are smooth as glass.  Thanks for your support!

McKay

[SooMK]

This is great news. Wish all the best for everyone. Recovery is scary and understanding the meds and not feeling that great is all overwhelming at first but he'll get there. I hope the wonderful donor recovers as quickly as my donor did. These donors are very special people. Best to you all.

[Deanne]

Congratulations to both of you. It isn't just life-changing for your husband, it'll be life-changing for your whole family. Donors must be born with special DNA that almost makes them a separate (wonderful) species of human.

[Rerun]

Prayers coming your way.  Blessings for the kidney; may it last forever.

Rerun, Admin.   

[McKay]

Creatinine down to 1.43 this morning!!  Hasn't been that low in 15 yrs!  Still lots of pain but moving around better, walking more and more.  Had 3rd and last infusion of thymoglobulin today,  so he'll get better rest tonight since bp's will be 4 hrs. apart.   High dose steroids causing elevated glucose of course but minimal insulin handling it.  Hope that levels out with lower pred dose ahead.  Cath and central line out in morning,  and plans are for discharge in the afternoon, if all goes well with voiding.  Donor doing amazing,  going home tomorrow too.  First clinic appt set for Monday.  Can't believe we've come this far!  Our angel will be discharged tomorrow as well,  doing wonderfully.  Thanks for caring! 

[okarol]

  That's awesome - best wishes to your hubby and donor!

[cassandra]

Fantastic news!!!!

     


Love to all of you, Cas

[McKay]

Thanks, all!  Sure do appreciate you!  Donor is doing very well and has follow-up tomorrow.  Hubs is moving around well and had his first follow-up labs/clinic today, 6 days postop.  Long and tiring morning.  Incision looks great,  sutures and ster-strips still in place,  and he never had a drain.  Creatinine 1.26 and all else good too.  He is on Tac, Myfortic and Pred, plus Bactrim and Keflex.   Tac at target level.  Feeling side effects but uncertain which is from what.  Going to try to really reduce the pain med to Tylenol to see if that's contributing to his queasy/off feeling.  But how could he not feel that way less than a week post trp?  Will experiment tonight and tmrw so he will have a more clear picture by Weds. clinic.  All of these have their side effects.  Any comments? 

[SooMK]

I had some stronger pain med in the hospital that I stopped taking early on because it was hard on my stomach. There's so much going on in your body that it's really an assault. Even if you could identify which side effect was from which med it doesn't matter too much in the early days. Slowly the pain from the incision goes away and your body does a lot of adjusting and they take you off some of those meds. It's slow going but it will get better. Congrats to you all.

[okarol]

The meds can take some time to get used to. The prednisone can make sleeping and resting very tough!
Queasiness can come from the residual effects of the anesthesia, everyone reacts differently. Jenna was fine post op but her donor was nauseous for days!
Best wishes that each day is better! 

[Simon Dog]

The prednisone can make sleeping and resting very tough!

\

Prednisone can also take out your hip joint - had to have a total hip replacement due to prednisone induced avascular necrosis (prednisone for 3 months for something other than a transplant).

[McKay]

Well we are cautiously optimistic!  We came home a week ago,  and things have gone pretty well.  They ordered labs at our local hospital,  and creatinine came back at 1.5 (two days after 1.29 at transplant center).  Trp. team said to stop the Bactrim, hydrate hydrate, and test again in two days.  Same result.  Went back to TC for labs and clinic,  and creat. was down to 1.32.  Dr. was happy about that,  and everything else.  Said there can definitely be differences in lab testing.  But told Bill to start back on Bactrim, and come back in 6 days with no local labs in between.  This way they'll know better if it's the Bactrim,  or just the lab.  A little nervous about that length of time between visits,  but the doc is confident all is well.....no gradual climb, in fact a drop again.  When do you get more comfortable about this?!  Bill is doing great, incision great at 16 days, steristrips still on, no sutures.  Doc said he can drive if comfortable, and to get out an enjoy life with common sense approach, especially during cold and flu season. 

Donor doing beautifully as well.  Things have gone so well, so far!  Bill feels better than in many many months....can see the change in stamina even though he's post-op.  17 days ago he couldn't have handled the long day we had yesterday with travel to TC, without totally shutting down mentally and physically.  The effects are already amazing, after vs. before.   Donor coming to visit this weekend.  What a blessing! 

[cassandra]

Fantastic news again. The Dr is right about the labs though. Good to hear the donor is doing so well too? You'll feel more comfy with it all with time, but will never go away, and 'learn to live with it'.

Enjoy the weekend, and love to all, Cas

[okarol]

Well we are cautiously optimistic!  We came home a week ago,  and things have gone pretty well.  They ordered labs at our local hospital,  and creatinine came back at 1.5 (two days after 1.29 at transplant center).  Trp. team said to stop the Bactrim, hydrate hydrate, and test again in two days.  Same result.  Went back to TC for labs and clinic,  and creat. was down to 1.32.  Dr. was happy about that,  and everything else.  Said there can definitely be differences in lab testing.  But told Bill to start back on Bactrim, and come back in 6 days with no local labs in between.  This way they'll know better if it's the Bactrim,  or just the lab.  A little nervous about that length of time between visits,  but the doc is confident all is well.....no gradual climb, in fact a drop again.  When do you get more comfortable about this?!  Bill is doing great, incision great at 16 days, steristrips still on, no sutures.  Doc said he can drive if comfortable, and to get out an enjoy life with common sense approach, especially during cold and flu season. 

Donor doing beautifully as well.  Things have gone so well, so far!  Bill feels better than in many many months....can see the change in stamina even though he's post-op.  17 days ago he couldn't have handled the long day we had yesterday with travel to TC, without totally shutting down mentally and physically.  The effects are already amazing, after vs. before.   Donor coming to visit this weekend.  What a blessing!

 

[Rerun]

Remember to take his temp everyday and twice if you want to.  A rise in Temp indicates a problem.

Glad things are going well.             

[SooMK]

This is such good news. I have found that the constant angst slowly subsides if things are going smoothly but is never far away. I think that is as it should be. It helps a lot as the number of meds is reduced. Hope all continues to go well.

[Darthvadar]

Great to read such good news.....

Keep us updated when you can...

Oh, and  to IHD... Sorry about the delay in welcoming you... Had computer problems....

God bless...

Darth... Moderator...

[McKay]

Thanks, all!  Appreciate you so much.  Things are going very well, 26 days post. Return labs/clinic last week were good - creatinine 1.43, Dr. feels this will be his baseline, lower readings were due to fluid overload immediately postop.  9 day span between visits - next visit will be stent removal, one-month labs, clinic.  He's feeling better, but had a strange episode last night.  Was awakened with intense headache and jaw pain, both sides.  Never had this before.                 No cardiac symptoms, stroke symptoms,  more like TMJ,  muscle spasm.  Is this a side-effect of any of these meds?  Didn't uncover anything online.  It lasted two hours,  then finally relaxed.  Just sore today.  May call nurse coordinator tomorrow but hoping for a quiet night tonight.  Thoughts?   Otherwise all seems well along the timeline.  Donor doing fantastic.  What a wonder she is! 

[cassandra]

I'm sorry, but I wouldn't know either. Did you have a quiet night, and did you call the nurse?

Love, and luck, Cas

[McKay]

Well,  the jaw pain hasn't returned as violently - Bill thinks it has to do with headaches, tension.  But, on to other issues - which he hates to even talk about as he is so grateful to have this new kidney.  I imagine you get that.  Clinic visits have all gone well and creatinine has settled in around 1.4.  Prednisone was reduced to 15mg,  and ProGraf reduced to 2 BID.  Now the main issue seems to be regulating blood pressure - it's too low!  This man has been on BP meds for 25 years!  Pre-transplant, Stage 5, he was on furosemide, hydralazine and doxazosin.  They stopped the furosemide immediately postop,  kept him on the dox BID, with hydralazine PRN.  Over the past few weeks,  they've dropped the hydralazine.  We've had a two week span this time between visits,  and don't return until this Thurs.  But,  the past 48 hrs he hasn't taken any dox at all because of low BP.  He called the local pharmacist to see if it's OK to stop it 'cold turkey' - and he said it's fine,  but it should all be out of his system in 72 hrs so watch the BP carefully (which we've been doing anyway).  The docs said they like to keep the BP a little high for perfusion of the new kidney - so we're a little concerned.  Is this little kidney bean so powerful he won't need BP meds anymore?!  Or,  is this a cardiovascular issue too?  4 days till transplant clinic - but will call nurse coordinator before then.  Apparently doxazosin cause fluctuations but we haven't seen him this low, ever!  Of course it also makes him feel crappy.  We'll figure it out eventually - and he does see a cardiologist,  so maybe a 24 hr. BP monitor will be in order.....he wants so badly to feel as good as he thinks he should!!  He is at 6 wks now,  and realizes most of this is medication related.  Donor is doing great,  back to life full-swing,  wedding in 2.5 months.  Busy busy!  Thanks for your support and input!  McKay