Tuesday, November 29, 2011

He's Been Stamped

We drove into the Salt Lake City area yesterday so Chris could get a good night's sleep tonight and be well-rested, comfortable, and relaxed during his cardiac appointment and stress test today.   It didn't quite work out that way.  At.  All.

We had a nice, healthy lunch (Chris' first time at a Whole Foods store!) and proceeded to the appointment.  We wanted to be a bit early so we had plenty of time to find the place.  It was about a quarter after one when we got to the cardiac lab for our 2:00 appointment.  I asked the sweet gal behind the counter (pause for quick public service announcement)
Note to sweet girl @ cardiac lab:  Your white t-shirt is VERY TIGHT.  This might be dangerous to some of your customers who are HEART PATIENTS.  Thank you.
(and we're back) took our name and gave us the clipboard.  {You know, the clipboard full of forms that we've filled out for the 8,273 other doctors we've seen.}   Then she says "Great, you'll be seeing Dr. Mitchell".   And I ask if that's before or after the stress test that we're here for.   "Oh, no, you're not on the stress test list."

Okay, so this is where we get a little unnerved.  We will have driven 700 miles, slept in a hotel, spent $100 in gas and about that much in food just to get here and NOT have the stress test?  Argh!  We'll have to come back again for that?  Argh! 

I did some quick thinking -- and since we had 40 minutes until our appointment time -- I filled out the form and left Chris in the waiting area while I scooted downstairs to the kidney lab folks we met with 2 weeks ago.   I explained to Jessica at the front desk that we had come all this way, were scheduled for a stress test, and that the cardio people said we aren't on the list.  Can we get on it?   For today?   Please?!

Jessica called Doug & Heidi (the coordinators) but just got their voice mails.  I was anxious to get back to Chris so I gave Jessica Chris' cell number and went back up to cardio.  I hoofed it back upstairs and told Chris that I gave her his number and that we should keep an eye on his phone.   Oh, look, there's a message on it already.   The hospital is "Emergency Use Only", so I hoofed all the way out to the front entrance to listen to his messages.   Heidi did call back, but said we don't need a stress test (scream!) and that she knows the call might not go through so she'll call cardio and talk to Chris directly.  

Out of breath and ready to scream, I get back to Chris and he had just spoken to Heidi and returned to his seat.   She apologized for our misunderstanding (OUR?!).

So we did see the doctor (after his nurse and NP, oh, and after another HOUR of waiting as he was 60 minutes behind schedule).   Results:
  • He recommends Chris take an ACE-inhibitor again, so long as the kidney doctor is OK with it.   These do have some kidney side-effects, but it would be good for his heart valve situation.
  • He explained that the options for replacing Chris' heart valve include a mechanical replacement or a bioprosthesis from pig tissue.  The pig ones don't last very long, so typically for young men (Chris) they'd do the mechanical.  But the mechanical option also comes with having to take blood thinners which would make him ineligible for the kidney transplant.   So if/when the valve needs to be replaced the natural tissue would be better, even though it too would need to be replaced in Chris' lifetime.
  • Chris doesn't need a stress test.   He gave his stamp-of-approval without it.

Deep breath.   Relaxation exercises.   Happy to have the stamp.   Wondering why the trip was necessary, though, since our cardiologist OK'd the surgery.   *Shrug*  Things would have been SO MUCH BETTER if we hadn't gotten there early enough to worry about it!  I just thought I was being pro-active and trying to make sure we got what we thought we needed.

Chris phoned Heidi before we left town just to make sure she had everything she needs.   She said she did, and that they'll be making their decision during their meeting on the 8th and she'll let us know.   He said he'd be having surgery that day, so please leave a message.

Friday, November 18, 2011

Back to SLC

Heidi, our transplant coordinator, just called.   She said that Chris definitely needs to go back to Salt Lake for the cardiac stress test.   It's scheduled for Tuesday, November 29th.

She said they won't be able to certify Chris for the transplant until after he's done the test, so sadly that leaves us with a nearly 2-week delay.

Iron & New Surgery Date

Chris had his first iron infusion today to treat anemia due to his chronic renal failure.   It lasted about 3 hours, and then they wanted to keep him another 30 minutes to make sure he was OK.   Chris said there's a long list of weird side-effects, like puking blood that looks like coffee grounds(!) for us to keep watch for.

Luckily, the gal at the infusion place was able to read his tuberculosis test, so that saved us one trip today.

In other news, we got a confirmation e-mail about his cathether placement surgery yesterday.   It stated Wednesday the 8th of December.   Well, the 8th is a Thursday (because my fortieth birthday is Friday the 9th, I knew this off the top of my head) so I e-mailed the scheduler for clarification.   The surgery is now scheduled for Thursday the 8th.

That reminds me, I need to call nephrologist Dr. Mallea and let him know that Chris' surgery has been scheduled.   We'll need his help to order the machine & supplies for dialysis, as well as to schedule someone to come over and help us learn how to use everything.

Thanksgiving week is not free of appointments.   Chris has an accupuncture appointment on Monday.  We purchased a Groupon for this.  My friend M.A. says that her husband with kidney failure has had positive results with acupuncture treatments, so we'll see if Chris receives some benefits, too.

Wednesday, November 16, 2011

All Day Meetings at U of U

We drove down to the Salt Lake City area yesterday and arrived at University of Utah Hospital in plenty of time for our meetings this morning.  Our packet said 7:30, although things didn't kick off until 8.

We started off in the conference room and heard from Heidi, our new transplant coordinator.   Then was the nutritionist, financial people, and pharmacist in a group setting.    In addition to us, the group had one older female who had her kidney transplant 30 years ago and needed another and also one man who I'd guess was in his early 30s who had a kidney transplant 4 years ago and needed another.

Then each of the three transplant candidates was given his/her own room in the clinic.    The set-up was cool.  On each candidate's door there was an "in/out" checklist, so each specialist checked off his/her box as they came in and out.  This way, they could rotate through the group and not miss anyone.  I'm sure this is especially helpful when there are 8 candidates.

As soon as we were in our room, Chris needed to use the restroom.  The staff was all over it!   They followed him into the room and got a urine sample.  Immediately thereafter, a gal came in to do an ultrasound of Chris' bladder to see that it had emptied completely.  It did not.  He had 75ml left.  We met with a nephrology fellow, nephrologist Dr. Abraham, surgeon Dr. Sorensen, a social worker, a nurse who pricked Chris' arm for a TB test, and the finance gal came back.  We were given an order for a chest X-ray which we did at Radiology just after lunch.  We were done with everything around 2pm, and they sent us to the lab to draw FOURTEEN vials of Chris' blood.   The lab thing took a while because they had the wrong birth date on one of his vials.  We were out of there by 3 and heading for home.

Takeaways from the meetings:
 - Dr. Abraham said Chris really needs to go ahead and get on dialysis, despite his strong desire not to.   His blood work and urine tests indicate some toxins that his system needs to expel prior to the transplant.
 - Dr. Abraham and Dr. Sorensen both said Chris might have to return to U of U to have their cardiologist test Chris' heart, even though Dr. Undesser here in Boise didn't need him to.   They'll let us know what they decide.
 - Even with insurance, the surgery and medications are expensive.   They even suggested fundraising.   We'll put some thought into that.
 - The transplant LIST Chris is hoping to be put on is not a pure waiting list.  There are points assigned to each person based on the amount of time on the list, how closely he matches to the available organ, etc.
 - He's not on the LIST yet.  The committee will vote and we'll let you know as soon as we hear.

As we were leaving U of U, I went ahead and called Dr. Giles to schedule the surgery to install the catheter to allow for the peritoneal dialysis.  Chris will be having that at Saint Alphonsus hospital in Boise on the morning of December 7th.  The cath needs 2 weeks to heal, so he's looking at starting dialysis on or around the 21st of December.  He needs a "clean room" to dialyze, which means my craft room is on the chopping block.  I'll start cleaning that out soon have a big sale.  Let me know if you'd like to hear when that's going to happen.

Chris has his first iron infusion on Friday morning.   Hopefully, someone there can also read his Tuberculosis test that was administered today.   This would save us a doctor/clinic visit. 

That's all for now, folks.  Thank you all for your kind words and friendly thoughts!

Thursday, November 03, 2011

Clean Teeth, Low Iron, and High Creatinine

We got the results of the bacteria test.  He had a little, but none of the very dangerous ones.   He went in for his teeth cleaning today.   It was a very in-depth cleaning.   We purchased the recommended Waterpik Platinum Dental Water Jet so he can floss with a jet of water to keep his mouth squeaky clean.  He's going to practice with the jet for a few days with plain water before adding some special CloSYS Antiseptic Oral Rinse to the mix.   This will be another blow to the bacteria!

He took his typical pre-visit antibiotic and then the doctor gave him a follow-up antibiotic so he started that this afternoon.   He'll take those three times per day for about a week.

Good news:  The dentist signed the transplant "OK" form, and we'll fax that in the morning.  We think this is the last hurdle before getting scheduled for a visit to Utah to meet with the transplant team.

Chris had bloodwork re-done on Monday and he heard from Dr. Mallea's office today with the results.   Last week's test said his creatinine clearance was 6.9.   This week it was only down to 6.7, which is still very high.   Ashley said that she's going to have the surgeon Dr. Giles get in touch with us to schedule a consultation for the surgery to install the catheter to allow for the peritoneal dialysis.

St. Luke's hospital called today about Iron infusions for Chris.   He will have three sessions that last 3-5 hours each.   His dates are 11/18, 11/28, and 12/5.