Mom's Not a Match

Chris told me this evening that his Mom called.  She got some testing done, but she's not a match.  Her blood type isn't compatible. 

I know she had been wanting very much to help Chris in this way, so I'm sure she's disappointed.  I thought it was so wonderful for her to offer him her kidney.

Chris said that his mom is still going to try to help him get a kidney, but instead of donating to him directly, she's going to see if she can become part of a Living Donor Chain (they did a story on this recently in Parade Magazine).  It was described at a party this evening as "musical kidneys", which sort of fits.   It's where Chris' mom's kidney would be used by another recipient, whose designated donor would give their kidney to Chris (or someone else that matches) and so on.

We're still working for Chris to be successful with the dialysis and keeping our fingers crossed that it will help his heart function well enough that the folks at the U of Utah Transplant Center will agree to do the kidney transplant without requiring heart surgery beforehand.

Delivery #1 & Follow-Up

We got our first delivery from Baxter on Tuesday morning.   The man was very nice and said he would be our regular delivery person.   He was able to fit all the supplies in Chris' new dialysis room.

Wednesday, we spoke to the folks from DaVita pharmacy.  At length.  All the meds, all the doses, how many of each pill he has left, etc.   Chris and I handed the phone back and forth as we answered all the questions.  Looks like they'll be a very convenient option for getting all the medications delivered to us on time, without having to drive out to Costco, etc.  Hopefully this will work out and be nice & convenient.

Thursday, we went to see Jennifer again.  We had a whole list of questions and things to bring her.  She gave Chris EPO and iron shots again.  We switched out the spring scale (that weighs the bags of fluid that drains out of Chris' abdomen) because it wasn't working well.  We also got a few drain bags so Chris can drain before bed.  All in all, she said he's doing great and we made an appointment to see her again next Thursday.

Chris had an episode one night this week, although I don't remember which one just now.  He had terrible abdominal cramping while he was in the process of draining out his fluid.  He ended up stopping with about 800ml of fluid still in.  We mentioned this to Jennifer but, since it was an isolated incident and since the remaining fluid came out in the morning, she wasn't concerned.

Chris wants to be able to do his dialysis at night on an automated machine so he doesn't have to deal with these fluid exchanges all day long.   (Here's a link to some information on how that works.)  Jennifer said they can test Chris in the middle of January to see if he's a candidate for that.

Right after our appointment with Jennifer, we stopped at Wal-Mart.  Chris picked out a giant bean bag chair (seriously, chair doesn't really do this thing justice) and had it delivered to the store.  Holy Cow!  This thing is a beast!   It's huge, and hopefully he'll be comfortable in it while he's using the APD machine.   I've caught both Digit and Dusty in it, so it's apparently comfortable enough for them too.

Full Week of Training

We've been at DaVita training with Jennifer every day this week.  Training has lasted about 2 hours per day.  We've gone through every section of the binder, learned all about the regimented daily routine and why it's so important.

Chris will be taking his temperature, weight, and standing & sitting blood pressures each day.   These factors will help him determine which concentrations (yellow/1.5%, green/2.5% or red 5%) of dialysis solution he will use.   Some days he'll do all yellow, others may be two yellows and a green.   He's also going to chart all these numbers, so Jennifer can help track his progress.

If his weight spikes, then his blood pressure will likely go up, and so he'll need a higher concentration of fluid.   Lots of variables.

Diet changes, too.  He's going low-phosphorous, which means no more whole-wheat bread, no nuts, etc.   Processed meats (hot dogs, sausages) are out.  We were surprised to find out that dark-colored colas were on the no list, but lighter sodas like Sprite are OK.

Chris had some very specialized blood work done on Monday and they told us that his kidney function is down to about 9%.  This means that he IS now eligible for the EPO (Erythropoietin) shots to help his red blood cell production that Humana had not approved earlier.  It also means that Jennifer can give Chris the iron in a shot, rather than having to spend hours at the hospital getting an infusion.  On Friday, she gave him both the EPO and the iron.

She sent us home on Wednesday with a scale, blood pressure monitor, a heating pad and several bags of fluid.  Chris did his exchanges and also demonstrated his proficiency when Jennifer came to do a home visit.

We have an appointment to come back on Thursday to see Jennifer, and we're also expecting a big supply delivery from Baxter on the 27th.

Training Begins

We headed over to DaVita today for our 1:30 appointment.   We didn't know what to expect, but I wasn't thinking we'd be there 'till after 3:00.

First, Jennifer was concerned about the cath site.  She asked us if we were "the ones who took off the bandage ourselves."  Yes.  That's us.  She took off the current dressing and said things looked great.  No infection.  She cleaned the site and then added a connector to the end of the tube.  She flushed the abdominal catheter to make sure it was working properly.  (Flushing entailed having one full bag of dialysis fluid pumped into and removed from the abdomen.  Chris said it felt weird.)

We were then taken to another room to do some training.   She showed us how to clean the site, and she gave us a big bag of gauze, tape, ointment, etc.  We also got a binder with information.  Then we watched a video of how to care for the site during & after a shower.  The video was pretty poorly done -- it looked like it was done in an old Days Inn motel room.  Time for an update!   Chris passed the post-movie quiz.

We'll have to purchase table salt, distilled water, antibacterial soap, paper towels and antibacterial gel for the bathroom & his clean room.  Everything else will be provided by Baxter, she said.   Oh, and we will look into purchasing a belt to hold the tubing in place.  The tube coming out of his abdomen is longer now, and he's uncomfortable with it taped to his stomach.  It looks like one of the belts is covered by Medicare so I'll look into that soon.

That reminds me... speaking of Baxter... they're really on the ball.  They've already called Chris to see if he needs any of his supplies re-ordered.  We haven't even started yet.  Jennifer said that we'll have to place orders with them monthly, and they'll contact us if they don't hear from us by the appointed time.

There's more training to be done, so we'll see them again on Monday from 1:30 to 3:30.  It also seems like there's even more training after that, so it'll be the week of the 26th or so before Chris starts actual dialysis at home.   It's time for me to stop procrastinating and get my craft room ready for its new purpose.  I'm dreading this project.

Back to the Kidney Doc

We had our follow-up appointment with Dr. Mallea today. Things went well during the appointment. He wasn't happy that we had changed Chris' bandage on the surgical site -- the surgeon's on-call guy shouldn't have recommended that we try to do it ourselves. He had a nurse from next door (DaVita dialysis) come over and had us all put on masks. They said I did a really nice job with it, so hopefully there won't be any infection. Chris indicated he was still in significant pain from the surgery, so Dr. Mallea wrote a prescription. The doctor also ordered some labs because Chris hasn't had that for a few months. He also said we'd get a call from DaVita to get training started for the in-home dialysis.

Off we went to the pharmacy, but it turns out they don't even make the strength of medicine Chris was prescribed. (And a sincere thank-you to the gentleman at Walgreen's that told us. He could have just said "We don't have any" and I would have been on a wild goose chase all around the Treasure Valley.) We left a message for Ashley about this issue and went over to do blood work.

Ashley called around 4:20, and Dr. Mallea had just left. She found someone else to write the script and we raced up to their office to pick it up.

We also got a call from DaVita, so we'll go over there on Friday at 1:30.

And Out It Goes

Chris decided he'd had enough of the catheter, so I called Urgent Care in Eagle to make sure they had the order for tomorrow morning. Neither of the gals there had seen the order but the receptionist said that they could go ahead and do it whenever, it's a fairly easy procedure. And she added, "We're open 'till 10."

I mentioned to Chris that they could do it right then, and he stood up and was ready to roll. I went upstairs, got dressed, and drove him down there.

The nurse recognized me and said, "Kim, right?" Guess that makes us regulars.

Anyway, cath came out. They tested some urine to make sure he didn't have the beginnings of a urinary tract infection (which is the biggest complication of cath removal). Test was good. Ross happier. We were in & out in under 25 minutes.

Tonight, Chris noticed more blood on his bandage that covers the surgical incision. We'll keep an eye on it and call the surgeon if it gets any worse.

Not in the mood

So they Cath'd me. I have to have it in until Monday. It hurts to stand and it hurts to move around (and part of the tube has been inadvertently pulled by me, one of my cats, or Kim at one point or another). When they take the catheter out if everything works like it is supposed to it's going to be a very happy day.

Another fun fact about surgery, when they put you under general anesthesia your bowels tend to shut down for a few days. They are pretty slow to wake up but I have started passing a little gas which is a good sign, hopefully by Monday everything will be back to normal (as can be) or I am gonna start freaking out.

The transplant team called and temporarily turned me down for a transplant. They are concerned my heart will not support a new kidney. At first they told me I was going to have to have my valve replaced and once I recovered from that I could go on the transplant list, but they called back later (I think she heard the frustration in my voice) and said that after 2 months of dialysis if my heart looked better they would do the transplant without the valve surgery, so given the healing time required for the home PD catheter. It will be about 10 weeks before I find out if I am eligible for a transplant or not.

It's frustrating because not 1 but 2 cardiologists both signed off on me getting a transplant (theirs and mine) and now they change their mind on me. I'm pretty grumpy today, so I'm just not in the mood.

Early Morning Trip to St. Luke's

Chris didn't have any luck trying to urinate since being catheterized yesterday. He was in a lot of pain and experiencing a significant amount of bladder pressure this morning.   He woke me up shortly after 7 and we went back to St. Luke's Eagle for another catheter. His dry mouth is so bad that chewing food is a problem, so we're hoping they can change his pain meds, too.

This time, he had 880ml of fluid drained. They did not change his pain meds, though. An early call to Dr. Giles' office didn't bear any fruit because we didn't recall the name of the medication that Chris had received from Dr. Mallea during this last bout with gout. Hopefully Dr. Mallea's office will call us soon with that info. (They opened 20+ minutes ago, so it shouldn't be long now.

Also, hoping today for a call from U of U with good news. Fingers are crossed.

One Hospital Visit Becomes Two

This morning started out very early.   We were to report to Saint Alphonsus by 7:15.   We were on time and the registration process was pretty painless.    Chris had received 2 phone calls over the past 2 days for pre-surgery questions and pre-registration questions, so most everything was already done.

The surgery was very quick... only 20 minutes or so.   The surgeon, Dr. Giles, came out to tell me that everything had gone well and Chris would be in the recovery room where I could be with him in about 45 more minutes.    During this period I called his mom to tell her he was doing fine.  I was also hoping to get something to eat.  The surgical wing is right next to the cafeteria.  It's almost like torture to force the poor patients who haven't eaten since midnight to smell the yummy food!  Unfortunately for me, the cafeteria's great-smelling goodies were only being served to staff and their guests for their annual holiday party.

As soon as they brought me back to see Chris, he started complaining about shoulder pain.  I thought at first maybe it was because they had to shift him around on the operating room table.   One of the nurses to whom we mentioned this said that the gas bubble from laparoscopic procedures often aggravates a nerve in the diaphragm and makes the shoulders hurt.  Isn't that weird?  You can read more about that HERE.

He had a very bad case of dry mouth.  He got some ice chips, orange Jell-O, apple juice and beef broth.  He couldn't urinate despite 2 tries, but the nurse didn't seem too concerned.  She measured 360ml of fluid in his bladder, but said they don't get concerned until it's 600ml or above.  She recommended drinking extra fluid and said that would help him.  Also, she said that Kegel exercises would be a good idea for him.  (What?  Kegels for men?!  Who knew?)  We left the hospital around 2:00 and then went to Costco to fill his pain medication.  We headed home after this and both tried to get some sleep.

Just after 6:00, Chris woke me up and said he was feeling a lot of pressure but despite additional attempts was unable to pee.  He called the number listed on the hospital discharge instructions, but nobody was there.  The surgeon's nurse on his answering service did call us back, and she recommended that we head to an ER to get him some relief.  We got dressed and headed to St. Luke's Eagle which is just shy of 2 miles from home.  There was only one other patient there (a very unhappy crying baby) so he got seen quickly.  The nurse inserted the catheter and Chris filled 2 containers with fluid (975ml!).  He felt better almost instantly!  The nurse there said that his prostate seemed to be causing the urethra not to be able to open enough, but that this catheterization should allow the urine to flow again.

We are home again and hoping he is able to void on his own tomorrow so we can avoid another trip to the doctor -- and another painful cath.

Today was supposed to be the meeting at U of Utah's transplant committee and they were scheduled to discuss and vote on Chris' application.   We didn't hear from them today, so we're hoping to have an answer tomorrow.

Upcoming scheduled doctor's visit:   Dr. Mallea in Boise at 12:40 on Wednesday, Dec. 14th.

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.

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.

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!

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.

Immunizations & Rescheduled Dental

Chris got his flu & pneumonia vaccines administered at Wal-Mart in Boise today.

The test results weren't available from the dentist on Friday, so that appointment has been rescheduled to Thursday.   They said they'd call if the results are in before then.

Coming up:
 - re-testing the bloodwork Mon or Tue
 - dentist Thurs
 - more vaccinations (Hep, Tetanus, etc.)

Dental Delay

The dentist called this afternoon and doesn't have the results yet from Chris' bacterial DNA testing.   We'll be rescheduling to sometime next week, it looks like, so he can get the results and then the appropriate treatment.

Blood Test Results

Ashley from Dr. Mallea's office just called with some results of the bloodwork Chris did late last week.

Two issues:

(1)  His iron was very low.   She said he is going to need a series of infusion treatments that will last over a few weeks.   She will be checking with Humana first to see if they're covered and then having St. Luke's call us to schedule.

(2)  He had a spike in his creatinine levels, meaning that his kidney function is way down.  Of course, this is of great concern to Dr. Mallea.   The doctor is pushing once again for Chris to have the surgery to install the catheter to allow for the peritoneal dialysis.

Regarding issue 2: Chris told Ashley that he wasn't feeling any worse, and feeling worse is the main symptom that Dr. Mallea was having us watch for in regard to kidney deterioration.   She said that the creatinine level spike might have been due to dehydration.   Chris asked to be retested and Ashley said she'd send us over a new bloodwork order.   When we get that, we'll make sure Chris has plenty of fluids and he'll take another test.

Up next:  Dentist tomorrow.

Ross = Rock Star

Okay, so I doubt a trip to the cardiologist's office counts as "fun", but today's visit was pretty close.   We saw the nurse first and she did an EKG after taking a quick history.  The EKG was quick, but we both hate when they shave off little sections of Chris' chest hair.

Then Dana, the nurse practitioner, came in with an observer.  Dana didn't seem to think Chris necessarily needs the full-on stress test.  She listened to his heart and really seemed to enjoy herself.   She said his heart murmur is 'really cool', and she asked if the student NP next door could come listen.   Then the observer said, "I'll come back with my stethoscope.  I want to hear it, too!"

My boring organs are jealous.  This even happens at the eye doctor!  They always want to show their student/associate/nurse/etc.  Chris is one cool dude.  (At least at the cardiologist's office, they're not shining a really bright-ass light into his eyeball to get a better look.)

Everyone got their own personal dose of Chris' heart noises and Dana said she'd put together a letter for the U of Utah folks today to OK the transplant.   YEAY!  :)

I got to feeling a little better on the way out when one of my Copic marker students came up to me and said how much he loved my class.  This was like 20+ months ago, so that was cool.

Next stop on the Transplant Train is Friday's dental appointment.   He'll get a cleaning plus the results of the bacteria DNA rinse thingy that he did last Friday.   At that exam, they said he had no cavities or tooth decay -- so we might just get a clean bill of health.   If not, it'll be a 3-month series of aggressive cleanings and a re-test.

Chris is having some back pain.   He has degenerative discs, arthritis and some mild scoliosis, so we made good use of Groupon and purchased some certificates for massages.   He has one scheduled for tomorrow noonish.   We hope this will give him some relief.   BenGay hasn't been working.

Nothing's Easy!

Today we thought we had a quick & easy dental exam.   Not so!

Well, in truth, the exam itself was quick & easy.  However, the dentist is being thorough and not just signing off on Chris' transplant paperwork.   He gave Chris a special bacteria test.  This consisted of a mouthful of salty fluid which he swished in his mouth for a set period of time and then spit into a cup.  The cup will be sent to a lab for bacterial analysis.

We'll go back to the dentist next Friday and see how the test went.  Chris will also do a full cleaning at that time.  With luck, his bacteria levels will be normal and Dr. McRae can sign the form.

Coming Up:  The kidney doctor's office called this morning and said they're OK with the nuclear stress test, so Chris will go ahead and have that on Tuesday the 25th.

Emerging Issues

When I woke up this morning, Chris was on the phone with Doug (the transplant coordinator from U of Utah).   Doug had received the echo report from the cardiologist's office.  Doug said that due to Chris' valve issue, we'll need to have Dr. Undesser sign off on any kidney transplant surgery.

Dr. Undesser's office called and scheduled a nuclear stress test appointment for Tuesday the 25th.   I'm concerned, though, because this test typically includes the injection of radioactive substances.  Normally, this isn't a huge deal... but because Chris' low kidney function doesn't allow his body to eliminate foreign substances like other people's bodies do, I am afraid this test might be a problem from the kidney doctor's perspective.   I called and left a message for his nurse.

Application On Its Way

It's been over 20 years (did I just say that?!) since I sent out my college applications, but I remember that feeling.  The application has been sent, but the transcripts and letters of recommendation are pending.   Just like now!

The big form was completed over the weekend and mailed on Monday.   Tuesday we faxed a request to the cardiologist to send over the most recent echocardiogram report.   Chris has an appointment to do the dental exam on Friday morning here in Eagle.

We've done quite a bit of research/phone calls for the immunizations and we think we have that nailed down, too.  The nephrologist's office said that doing multiple immunizations at one time will not be problematic because of Chris' condition.  Walgreen's Website has a great function where you can see what immunizations are in stock at which store and then actually make an appointment to receive them.  Here's a link.  So handy!   And the Walgreen's with the shots IS in Humana's network.  (It's not our absolute closest Walgreen's, but it's within 5 miles.)

The Packet

The big packet from University of Utah came yesterday, and we filled out all the paperwork this afternoon.  It will go out via post-paid envelope tomorrow morning.

We have some phone calls to make tomorrow:
- Dentist:  Chris needs to have an exam and the dentist needs to fax back a form stating that he has no oral infections.  His last cleaning/exam was in January 2011, not within the 6th month period required by this checklist.
- Pharmacies:  Chris needs a battery of vaccinations.  (Some others we may not need to have, but they'll tell us if he's immune after he has a blood test in Utah.)  Also we'll need to look up which provider(s) are in Humana's network.  Then, we'll need to select a pharmacy that has the one-dose Tetanus in stock.
- Nephrologist's Office:  We need to find out if he can have vaccinations several at a time, given his condition.  How long in between shots or groups of shots?

Luckily, a few things on the checklist are either done or not applicable.   For example, he had an echocardiogram with Dr. Undesser within the last few months.  And, since he's male, he gets to skip the PAP smear and the HPV vaccination.

For now, we'll work on getting the tasks on the checklist completed.  The packet states that once the dental paperwork is in, we'll get scheduled for the pre-transplant clinic class.  These take place on Wednesdays in SLC.

Looks Like Utah!

Today we had our appointment with Dr. Mallea.   Chris had a bad day Monday and was feeling a lot better today.

Chris' weight is down EIGHT POUNDS since the appointment with Dr. Davidson just one week ago.  Amazing how much fluid/water goes away when you're watching sodium intake!

I was really frustrated because today our insurance provider said that neither Denver transplant center was on our insurance network.  UGH!  I had already made appointments with both of them, and cancelled one, and now I have to cancel the other.

Dr. Mallea suggested Utah, and said he has had good outcomes with them and they're easy to work with.  Easy?  Sounds nice!  :)   They're also closest to us (only 5.5 hour drive).   His office contacted them quickly, and now we're awaiting paperwork from University of Utah Transplant Center.  Guess what?   Our insurance says they're a YES.   Whew.

After we go to Utah for the initial meetings, which we think will be mid-November, then we'll get a list of tests for Chris to complete.  After Chris completes his tests AND after the tests have been evaluated and approved by the folks in Utah, then we'll get a list of necessary tests off to his mom (and hopefully, donor) -- which she can work on in Florida.

We did go to Chris' kidney doctor today and went over his meds.   Chris will do blood lab tests in about 2 weeks and go back to the kidney doctor in 2 weeks after that.   (11/16)

Kidney Seriousness

Today we had the big "come to Jesus" meeting with Dr. Mallea.  I had hoped this day would never come and, although I knew it would someday I really wasn't ready for it to be today.

I had been thinking of Chris' kidney health in terms of his percentage of function.   It had been 27% for years and years.   So today the first thing I asked Dr. Mallea is what the percentage is now.   He did the calculation and came up with 9-13%.   *ACK!*   No wonder he hasn't been feeling good!

Dr. Mallea had us both sit down and he really talked to us about getting the catheter put in for dialysis.   Chris REALLY doesn't want to go this route, but Dr. Mallea is making it sound necessary.   See, if the time comes when Chris needs emergency dialysis, it'll be too late to put in the catheter in his abdomen.   They'll have to do one in his chest, and Chris will have to do the blood dialysis instead of the abdomen fluid dialysis -- which is problematic because of his heart condition.

I'm nervous about Chris' gamble.   If he ends up with the blood dialysis thing and gets an infection, he may no longer be a candidate for a transplant.

We did schedule an appointment with Dr. Davidson for a 2nd opinion on 10/4.   I personally doubt we'll hear anything different this visit, but who knows?   Maybe there's some other treatment out there that we haven't tried.