Hoping for a Rockin' 2013!

Twenty twelve has stunk, and we're happy to bid farewell to it.   Here's where things are right now:

Chris' health:
 - He just passed his one-year anniversary on dialysis.  The arduous routine is getting on his nerves.  With any luck at all, next NYE can be spent without worrying about the machine.
 - He met with a pain specialist to see if there could be improvements made in his quality of life and give him some relief from the back pain, leg cramp pain, post-surgical chest pain, etc.  He started physical therapy and has been to three sessions so far.
 - We're dealing with a lot of stress, so Chris has started seeing a counselor weekly to help him deal with the medical issues, treatments, appointments, loss of freedom, etc.   At his session today, he said his counselor felt like he was sinking deeper into the depression.  This may be a seasonal thing, or it could be related to a recent medication adjustment.   He's going to talk to the medication manager next time he sees her to see if they need to be readjusted.
 - Just when it seemed like one more thing might send one or both of us over the edge, we noticed that Chris had a mole on his abdomen that looked suspicious.  A dermatologist agreed and removed it.   He called Chris back to have the "margin" (some additional normal-looking skin surrounding the mole) removed.  Removing the margin maximizes the chance that all the bad cells will be removed.   He's getting his stitches removed from the margin excision this week.
- Chris was active on the kidney transplant list for about 48 hours before he got an infection near the site of his dialysis tube.  After three rounds of oral antibiotics and an infusion, it does not seem to have subsided.
- He still has some dental work to get done.  Hoping to be able to afford that soon.
- We're wondering if he hit the million dollar mark for medical this year.   It'll be February or so before the final 2012 numbers come in, and we'll keep you posted.

Kim's health:
- A1C sugar was 6.7 on October 1.  This is lower than the 7.0 threshold for diabetic medication (Yeay!).  She's occasionally wishing she had a Coke in-hand, but is drinking water like it's going out of style.  In the last two weeks, she's been indulging in some holiday candy... but is hopeful that her next A1C test on Dec. 3rd will be OK.
- She has been spending some more time doing her rubber stamping hobby in an attempt to relieve some stress and be among friends.
-  Kim is experiencing some of the side-effects of the diabetes which include joint pain (in the knees), tingling & numbness (in the legs for her), and fatigue.
- Her depression isn't doing very well.  Personal care is still an issue, as she tends to focus on Chris' needs.  She has started a weekly therapy session, too, and her counselor is using EMDR methods.  Her counselor brought up that Kim is displaying a large number of symptoms of PTSD, and that traumatic events have overwhelmed her usual cognitive and neurological coping mechanisms.  (Yes, they have.  They are.  They do.)  Hopefully this treatment and the two antidepressants she's on will help with that.
- Eyes are a big issue with diabetes, and her doctor sent her for a thorough eye exam.  The prescription has changed a bit and Kim has been squinting a lot, so we're checking around for good deals on a new pair of glasses.  It's been 5 or more years since she got new ones, so it's time.
- She has dental work to get done, too.  Because Chris' is needed for his transplant, he'll go first.

Digit is aging and we're worried.
- Her fur was getting matted, and we were able to remove the mats.  Some by shave, others by scissors.
- She looks skinnier.   Maybe partially because of the shorter fur, but she's definitely losing weight.   We've been giving her chunky wet food in addition to the dry food we leave out for them.   She's eating it.

So this week is a busy one -- we have SEVEN doctor appointments to be squeezed into the four business days this week.   Here's hoping for a great 2013!

Still Adjusting Meds

Today was Chris' big monthly appointment at DaVita.  They drew blood last week, and the results are in.   Chris' phosphorus went way up to 9.7.   He cut out most of his Kool-Aid consumption, so we don't know what's causing the spike in his phosphorus.   They had him stop taking both the Lipitor and the Sensipar in hopes that this number will go down.

Of all the things Chris has going on, phosphorus didn't really seem like that big of a deal... until we found out more.  The excess of phosphorus in the blood causes calcium to leech out of bones and, if there's a long-term imbalance, causes this calcium to be deposited in blood vessels and the heart.  It makes vessels stiff and inflexible, and raises the risk of heart attack.

So it turns out that it is something to watch.   I updated his pills this afternoon and he has a follow-up appointment Thursday the 15th.

Tremor Meds No Bueno

Chris had a heart flutter yesterday during his graduation visit to Phase 2 of Cardiac Rehab. 

Today, he his head was freezing cold, clammy & wet to the touch, but he said he was burning up.   This was at about 11:45am.   We were planning to go to DaVita for our 2:00pm appointment, so he decided not to go to the emergency room.   He did have me check on him later, and he seemed fine.   We went to DaVita and explained to Jen what had happened.   She recommended that we call Dr. Lyons today and consider discontinuing the Primidone.   Chris was concerned about his heart rate and some of the other readings that our home blood pressure cuff is giving us, so we'll take it in to Jen next week (appointment on Thursday afternoon) for her to check it.

Chris called Dr. Lyons and he wasn't in.  The doctor he spoke to said hastily to "stop the medication immediately" and that Dr. Lyons would call Chris on Tuesday.

Also on Tuesday, I'll be calling Heidi, the transplant coordinator at U of Utah.   I need to make  follow-up appointments with her transplant team and also with a cardiothoracic surgeon.   (Dr. Gomez-Abraham is no longer with the university, so we'll need to find another surgeon who will check Chris' progress.)

Tremor Diagnosis

Chris has had a tremor that has affected his hand coordination and movements for his entire life.   It has gotten progressively worse, so he got a referral to see a neurologist to see what it was and if anything could be done.

The doctor said Chris has a Benign Essential Tremor.   He did get a prescription for antiepileptic primidone, and we'll see how well he tolerates it.   We have an appointment in mid-October to see how the treatment is working.

Chris' last phase 2 Cardiac Rehab session is tomorrow, so he'll be having his graduation and getting a T-shirt.

DaVita appointment coming on Friday.

What starts with G and...

... is an organ that hasn't given Chris any trouble?   (More on this in a minute.)

We had a busy day today!   It started off at Cardiac Rehab.   Chris decided to go, despite having some pain in sternal incision area.   His neck was stiff, too.   He did great at Rehab, though, and had an appointment directly after for a massage.   He said that she really worked out the knot he had in his neck, so we hope he'll be able to sleep well tonight.

While he was being massaged, Jen @ DaVita called and let us know that she faxed the paperwork to Dr. Lyons for Chris' neurological exam.   I called their office later and got him an appointment for Sept. 19th.

Next was our pre-operative consultation with Dr. Giles.  He discussed with us reasons why the catheter tube might not be draining properly and explained what he would have to do.  He's going to go in with a camera (laparoscopic, minimally-invasive surgery) to determine what the issue is and attempt to fix it by either removing an obstacle or moving the catheter site.    As we were wrapping up our conversation, Dr. Giles says, "Has anyone talked to you about your gallbladder?"   Chris replied, "No!", as we looked at each other and laughed.

Chris and I have this joke that he's going through the alphabet with medical issues.   Appendix.  Back problems, Congestive Heart Failure...  We thought we had G down when he had the Gastric Bypass and/or Gangrene!

Dr. Giles went on to explain that, on the CT scan to show the cath tube's position, he noticed that Chris has stones in his gallbladder.   Furthermore, the largest one is in the neck of his gallbladder and will cause trouble for Chris in the (possibly near) future.   He told us that when he was trained, surgeons removed the gallbladder routinely during gastric bypass surgery.  This is because most obesity surgery patients develop gallstones.  He also explained to us why a gallbladder is no longer needed in modern humans.

So, long story short, Chris has another G to add to his list!   Dr. Giles knows Dr. Sorensen (Chris' kidney transplant surgeon in SLC), so Dr. G is going to call Dr. S to make sure it's OK with him to remove Chris' gallbladder.  It's preferable to take it out now, rather than to try to deal with it in an emergency situation.

So, since Chris is already going to be under anesthesia, he will probably take the gallbladder out while is in there doing the catheter surgery.   It will still be outpatient, so he'll be home resting & recovering that same afternoon.  Dr. Giles' surgical practice was purchased by St. Luke's hospital system since Chris' original cath surgery in December 2011, so this surgery will be performed at St. Luke's Meridian.  It's scheduled for Wednesday, September 5th.

Another Busy Week

Chris had Cardiac Rehab today.   He wasn't 100% sure he would go, because his foot was bothering him.  He did eventually decide to go, and he said his energy was OK but the foot was still painful.

Tomorrow, Chris has Cardiac Rehab again and then a pre-operative consultation with Dr. Giles for his upcoming operation to re-position his dialysis catheter.

Thursday is Cardiac Rehab once again.  He has an appointment on Friday with his cardiologist to review the results of the echocardiogram he had done at St. Luke's in June to evaluate his new valve.

Today, I called Dr. George Lyons' office to schedule an appointment.   He's the neurologist that Chris has been referred to for evaluation of his tremor.   They haven't gotten the paperwork from the kidney folks yet, so I'll check back with them next week.

Another Surgery

Chris has been attending his cardiac rehabilitation sessions (with 2 exceptions this week because he's not been getting enough sleep) and he had 2 cavities filled on one of his teeth on Tuesday.

He hasn't been sleeping well because his dialysis machine keeps making these very loud alarm noises in the night.   It's not draining the fluid from his abdomen properly.  He has tried sleeping in different positions & stuff, but nothing he's done has helped.

Yesterday, he went in for a CT scan and later to DaVita for the big monthly meeting.   They didn't have the CT results at that afternoon meeting, but they did say that his phosphorus is back down to a good level -- which means that his significant reduction of Kool-Aid intake worked.   We met a new doctor, Dr. Pintar, and he examined Chris with his PA (also named Chris).

For some reason, they didn't get his PTH (Parathyroid hormone) levels when they took his blood last time, so Jennifer drew some blood to get that tested.

This morning Chris said Jennifer called with the results of the CT scan.  His tube is out of position, so he's going to have to have a minor outpatient surgery to move it to its proper place.  He won't have to spend the night at the hospital or anything.  Dr. Giles (who originally placed the cath) will be performing the surgery, and his office is supposed to be calling us today to schedule.

Chris is also expecting to hear from a neurologist soon.   He has had a tremor his whole life, and he wants to get it identified.   This way it can be treated, or perhaps we could find out if it's part of something else.

Phosphorus Again & Dental Issues

Chris' phosphorus was up last time we saw Jen, so she recommended doubling up on the Renvala to 2 with each meal.  Chris thought maybe his increased intake of Kool-Aid was causing the problem and Jen agreed.   Chris is laying off the Kool-Aid for now, and we'll see when his next tests come back whether that was the culprit.   If not, 2 Renvalas per meal it is.

Chris had a big dental check-up and X-rays last week.  Several cavities.  These all must be fixed so he can stay on the transplant list.   His first appointment for fillings is today, and he has his antibiotic to take beforehand.

We're both suffering from dry-mouth.  I think this is due to medications we take.   I purchased Biotene rinse, spray, gel, and toothpaste.   These are supposed to help with dry-mouth.  We didn't realize this, but the dentist told us that dry-mouth is a big factor in cavities!   This may help explain why Chris has several... he has only had ONE up to this point in his whole life.

He's keeping up with cardiac rehab and doing very well.   He does this Mondays, Tuesdays, and Thursdays.  Next kidney appointment is next week.

Caregiver Stress Syndrome

I knew this caregiving stuff was stressful, but I didn't know it was a recognized condition!!   Reading this article today was like looking in a mirror.  It's from Yahoo! news.

The average caregiver in the U.S. is a woman in her late 40s. Many are "sandwichers," looking after both children and aging parents. With little time or opportunity for adequate self-care, they're prone to "caregiving stress syndrome," a condition linked to a medical chart full of health woes, including obesity, diabetes, heart disease, high cholesterol, dementia, and back strain. More than 70 percent of family caregivers show signs of depression.

Men care for loved ones, too, of course. But women tend to have more negative experiences as caregivers than men, who focus more on problem-solving and less on emotional nuances, says I-Fen Lin, a sociologist at Bowling Green State University. Wives caring for husbands report the highest stress load, her research shows.

Emotional eating is a common coping strategy that backfires on health.

Silver lining: When stress is managed with good self-care and time off, many caregivers report a deeply enriching experience. Some caregivers even show improved longevity, better memory, and better physical strength, as well as a sense of meaning and purpose, say Boston University researchers.

Self-care started by accident, with the broken tooth, but now I'm about a month in -- at least with taking blood-pressure meds and going to the dentist.  Have a ways to go with other care topics, but I'm starting.

Please, dear readers, if you see me displaying signs of dementia PLEASE let me or Chris know.  I have all the other symptoms already.

Hot, Hot, Hot!

It's super-hot here today -- a record-breaking 108 degrees!   I'm so glad Chris was able to drive himself to cardiac rehab.   Today they finally changed up his exercise regimen, so he's happy about that.   His last visit to rehab (Thursday) didn't result in any exercise because his blood pressure was too low.  I picked him up early and we went to DaVita to see Jen.

Tomorrow, he's expecting his Baxter dialysis supply delivery between 7 and 10 in the morning.   He's actually hooked up to dialysis now, which is on the early side, so he can be disconnected and ready for the delivery person early.   We're hoping he gets everything he needs.   We're worried because his order wasn't submitted until Friday.   It's also for a whole different scheme of dialysis with daytime fills/drains, so hopefully he & Jennifer calculated everything properly.

Also tomorrow Chris starts collecting fluid.   When we go to DaVita on Wednesday, he'll bring his output for testing again and see if this week's new dialysis schema is an improvement over the last one.

In other news, Chris' incision site from the open-heart surgery has healed to the point where we can start putting Mederma scar-reduction gel on it.   Hopefully he'll see some improvement over time.

Low Average to LOW

Chris has been keeping very busy with his 3/week rehab.   On Thursday 6/28, he also did some labs and got his 26,000 units of iron at DaVita with Jennifer.

Because of the heart surgery, his body's ability to transfer waste products via dialysis has gone from low-average to low.   He's going to have to increase the volume of dialysis from 2000 to 2500 and he's going to have to add a manual fluid exchange in the middle of the day to his 10-hour exchanges via machine at night.

We don't know if it's related to the extra toxins in his body, but Chris has been suffering very bad attacks of hiccups lasting from 30 minutes to over an hour.  None of the doctors we've contacted want to give him any muscle relaxers to fix this... but I think we're going to have to be a little more persistent and keep trying.  The hiccups are causing him quite a bit of pain on his incision site.

We have a dialysis fluid delivery tomorrow, in addition to our regular delivery next Wednesday.  Because Chris' dialysis hasn't been as successful, we've been using a lot more of the higher-concentration fluid.   They're bringing us more "red" bags because Chris will be out before his regular delivery gets here.

I asked him if there was anything else he wanted me to say here and he replied, "I'm miserable!"   So there you have it.

Kim's Doctor Visit

Okay, I admit that I did squeeze in a few garage sales before my 9:30 appointment.  It's easy when they start at 7!

I saw Dr. Troy at the Middleton office.  I felt very well cared-for.

My blood pressure was still as high as it had been on Thursday, so he called in a prescription to WalMart so I could pick it up and start taking it right away.   It's a combination of Lisinopril (for high blood pressure) and Hydrochlorothiazide (helps rid the body of excess water).  He also wrote two other scripts for me and a lab order.  He wants me to have these done at their Nampa facility next week.

He thought that counseling might be a good idea.  It would give me a chance to have someone listen to all the things we're dealing with and offer up some strategies to help deal with all this.  I agreed, and explained that I had been referred by my regular doctor at least once in the last 2 years.  I told him about his doctor's network and how they served every area in the Treasure Valley EXCEPT Eagle where we live.  He said he's have someone call me Monday about it.

We stopped at the pharmacy on the way home, paid the $4 for generic, and I took the first one in the car.

Highs & Lows

My dad offered to drive me out to the dentist in Middleton this morning.   I filled out the paperwork and was seen very quickly.   The assistant took my blood pressure and went off to see the dentist.  The dentist didn't even say hello -- it was, "Did you take your blood pressure medication today?"  Um, no, I don't have any.

It turns out that my blood pressure was 164/112, and she wouldn't be able treat me in that condition.  I semi-joked that I was afraid of the dentist, so toward the end of our discussion she decided to take it again to see how much I had calmed down.  Nope, apparently not.  This time it was 180/114.   Whoops!

So Dad ran me back to Boise so I could take Chris to his cardiac rehab.   While I waited, I called my doctor's office and they couldn't get me in until July 19th.  They said I could try calling every morning at 8am to see if there were any cancellations.  Great.

Immediately following rehab, we went to DaVita for his appointment.   His blood pressure was very low again and, while Dr. Mallea was in the room, I joked that he could borrow some of mine since it's 180/114.  Oh boy.  Dr. Mallea did not like that one bit.  He said, "You don't want to become one of my patients, do you?  That needs to be handled immediately!"  Okay, so the appointment in July isn't going to cut it.

Dr. Mallea and Jen evaluated Chris' catheter site and said it still looked like it might have an infection, so they put Chris on another week of Cephalexin antibiotics twice a day.  It had also been leaking a little bit of blood there, so they're concerned that Chris might be over-doing it at rehab.

When I was at my dental appointment this morning, I noticed a "Medical" check-in window right next to the "Dental" window.  I called out there, and they said they could get me in on Saturday morning.  Garage sales out, Doctor's appointment in.

Low Blood Pressure & Not Sleeping

Chris has been participating in Cardiac Rehab when he can but, because of his low blood pressure, he has missed a session or two.  He also missed a session on Tuesday, 6/12, because he hadn't been sleeping.

His big Baxter supply delivery was on 6/11 and then rehab.  We made some calls about his Lipitor, Lopressor and Cymbalta pills not being sufficient in supply for the next week, so hopefully they'll get here as planned.

In other news, I broke a tooth in half a couple of weeks ago.  I've been going nuts trying to get an appointment at one of the local low-cost clinics, and finally got someone to agree to see me early Thursday morning, 6/14.  I'm in a little bit of pain but I'm so afraid of the dentist, I'd put it off forever if I could.

First Rehab and Sticker Shock

Chris was able to start Cardiac Rehab today.   He was on a special sternum restriction, so his main focus was on walking and resting.  They had a heart monitor on him the whole time, and he was glad he wore his hoodie so he could keep the monitor hardware in his pocket.  He did say he was a bit warm in his sweatpants, so he'll plan to wear shorts for future visits.

We stopped at our mailbox on the way home and got our monthly medical summary.   Now, before I show you this number, keep in mind a few things:

• this is for medical only -- no prescriptions
• it's for 1/1 through 4/30 of 2012, so the dialysis catheter outpatient surgery and the open-heart surgery are not included
• this does not include any of his required dental cleanings and dental equipment to be eligible for the transplant
• travel expenses to SLC for the trip in March not included
• nothing over-the-counter, like BenGay, his daily aspirin, or pain relievers like Tylenol
• dialysis room expenses like the special antibacterial soap, paper towels, distilled water not included
• nutritional needs like protein shakes, special bariatric vitamins, etc. not included

Okay, ready?

Jan 1 - April 30, 2012

I expect that May's is going to be astronomical.  That last bullet point reminded me that I need to call Dr. Oakley and schedule Chris' third annual follow-up.  Oh yeah, and salary for a full-time round-the-clock caretaker not included.  ☺

A Good Night's Sleep and a Possible Infection

Last night, Chris took a Benadryl that we'd had in the house.   This morning he said he'd had a good night's sleep!   So happy!  We'll add Benadryl to our shopping list for this afternoon's trip to the store.

Around 2, we went in to see Jen at DaVita.  We brought all our usual stuff and one extra thing:  the piece of fiber from Sunday night's drain.  She said it didn't look like anything to worry about, so we tossed it.

Chris told her about his exit site and she took a look at it.  She got a big Q-tip and took a sample of the little bit of drainage that came out.  They're going to culture it and see if anything's in there.  Dr. Mallea wasn't available for us to show.   She's going to have us keep an eye on it.  We decided we'll take a picture of it each day with a ruler so any changes can be spotted.

She gave Chris his 26K of EPO and an iron shot, and made two more appointments for the coming weeks.

Later in the afternoon, she called and said that Dr. Mallea wanted to put Chris on a week-long round of antibiotics just in case the site has any sort of infection.  She called in a med order to Walgreens.  She said they'll have preliminary test results on the sample as early as Friday, and a full report on Monday or Tuesday.

Basically, we're being hypervigilant.  Infections where the hole is (Peritonitis) are very bad... and with the new heart valve also at risk (Endocarditis) we can't take any risks of infection.  In addition to watching how the site looks, we'll also keep an eye on his temperature and see if it starts hurting.

Tomorrow, we'll be checking BP again in hopes of starting Cardiac Rehab.

SLC: In 'n Out

Monday, Chris' blood pressure was once again too low for an attempt at Cardiac Rehab.  We had plenty to work on -- packing up and planning our long drive.  While draining his dialysis fluid (the stuff after it's been in his body), Chris noticed a 5" long material called fibrin that looked like skin.  We took pictures of it for the nurse and also put it in a container in case she needed to test it.

Tuesday, we left the house before 5am and headed for Salt Lake City.   Chris had his chest X-Ray and we headed to Cardiology to wait for the doctors to see him.  We got a special treat in the waiting room as the ever-helpful Michele came out to meet us.   We brought her a little goody and were glad to get a chance to say, "Thank You!" in person.  She has been so great with the insurance companies and appointment scheduling and stuff.  I had planned to meet her while we were in Salt Lake last visit, but with Chris' surgery and everything it got postponed.

Four weeks post-op.

Dr. Gomez-Abraham told us that Chris was a champ during surgery and he knew Chris was doing great when he was complaining only a day afterwards.  Yes, the litmus test of Chris' health is whether he's complaining.  (He must be doing GREAT!)  hahhaa   He said that the X-Ray showed Chris' sternum (breastbone) is healing very nicely.  The sides are even.  He explained why some pain there is good, and how it feels as the newly reconnected nerves & muscles are waking up.  The doctor emphasized Chris' need to keep treating the sternum very gingerly while it continues to heal.  He was adamant about taking care not to carry to much or reaching above his head for heavy things.

We discussed Chris' blood pressure, and the doctor had Chris start cutting his Lopressor pills in half.  He recommended that Chris taper off his use of the Klonopin (for purposes of the kidney transplant) and that he try Benadryl for help sleeping.

We had another wait and then met with a Cardiologist and his assistant.  They had differing opinions on the timing of Chris getting an echocardiogram to get a baseline on the function of Chris' new valve.  The Cardiologist wanted us to stay so Chris could have it right then, but we were exhausted and had to get back on the road.  By then, we were at least 2 hours later than we expected.  They said we could follow up with Dr. Undesser back in Boise.

The drive home was nasty.  Wind like crazy, coming from the opposite direction than usual.  Not a ton of rain, but enough to be a pain.

We got Chris ready for bed and to be connected to his machine.  Chris noticed some blood or discharge on his exit site for the dialysis catheter.  We meet with Jen tomorrow and we'll show her.  We'll also see what she has to say about the fiber thing.

Low Blood Pressure & Anemia

We had lots of appointments planned for this week, but not all of them went as planned.   Okay, none went exactly as planned.

On Tuesday, Chris met with Dr. Shalz for an introductory/baseline appointment before commencing with the cardiac rehab.  She said he seemed very lethargic and tired.  We told her that his blood was tested on Thursday and he's very anemic.  His blood pressure was 84-something at the beginning.  By the end of the appointment, it was down to 82/52.   She decided not to have him start exercising today, and wanted to call Drs. Mallea and Gomez-Abraham to inquire about altering his medication regimen.

Tuesday afternoon, Dr. Mallea called and had us discontinue the diltiazem.  
(This was given to Chris to lower his blood pressure after the surgery to aid in the healing of the heart valve.)

Thursday, he was still very tired and his BP hadn't risen sufficiently.  Amber (nurse & exercise trainer at cardiac rehab) recommended that he not come in.

Friday we did the scheduled appointment with Jennifer @ DaVita.  He got EPO and iron shots, the final installment of his Hepatitis B series, and she gave him a new transfer set on his catheter.  I expected that we'd be there a long time because of all the procedures, but as always Jennifer was on the ball!  She had all the supplies ready when we got there.  (His BP at that appointment was 82/50 sitting and 98/62 standing.)   He's going to have three more weekly EPO shots to hopefully get his red blood cell count up.

Tonight, Chris and his minions are resting comfortably.  He's hooked up to the dialysis machine in my former crafty room.   This photo shows his special 'heart pillow' that he uses to press against his chest when he coughs.   He received it with a special fabric marker, and many of the nurses & staff signed the back of it.

Next week, we'll be driving to Salt Lake City for a chest X-ray and a surgical follow-up.  We'll also meet Dr. Wilson, who is another cardiologist.    Wednesday, we have another appointment with Jennifer (mostly for EPO).   Thursday is Cardiac Rehab, if Chris' blood pressure is good enough and he feels up to it.

Busy Week

Wow, this has been an incredibly busy week!  Chris has been busy resting & healing, and I have been busy attending to his every need.  I was nervous about this post-surgery period... and rightly so.  I haven't had a baby, and I'm guessing this is as close as it comes -- being depended upon for someone's every need.  I'm exhausted.  Luckily, my 'baby' grows up in 6-8 weeks!  :)

Chris had his orientation at the new St. Luke's Cardiac Rehab Center on Wednesday.  We really liked Amber, the nurse.  We were hoping she could remove the stitches from his chest tubes, but she didn't have a suture removal kit.  It turns out that her exercise class in the early afternoons works best for our schedule, so he'll be working with her every Monday, Tuesday and Thursday starting this coming Tuesday.  They're closed for the Memorial Day weekend.  His first week, he'll come in early on Tuesday to meet with their doctor and stay late on Thursday to meet with their counselor.

Thursday was his big monthly DaVita clinic appointment with their staff.  Everyone was happy to see Chris doing so well.  He even got a round of applause!  They did blood work, and Jennifer gave Chris 26,000 units of EPO since we didn't think he had any at the hospital.  Dr. Mallea asked us several questions about the surgery to which we didn't know the answers (like how many units of blood was Chris given), so Jennifer is going to get the surgical report from the U of Utah.  Jennifer was able to get Chris' sutures out, and he's VERY happy about that.

At the next visit, it'll be about 6 months since his dialysis catheter was implanted, so he'll get his transfer set replaced.

Coming up:

• We're expecting to receive a survey from the U of Utah Hospital to tell them what we thought.  Chris was very frustrated with their dialysis system and is looking forward to the chance to tell them about his experiences.
• We're waiting to hear from Dr. Gomez-Abraham's assistant Michele about the need for an echocardiogram.
• We're also waiting for Michele to get us a letter from the Doctor about Chris' June 5th follow-up trip to SLC.

Convalescing @ Home

Chris is convalescing at home.  We've been home since Tuesday evening and so far things are going pretty well.  He still has tape over the 18" long chest incision and then quite a few thread & wire stitches over the areas where the chest draining tubes were.

I spoke to Brandi at the new St. Luke's Cardiac Rehab Center.   It's the first in Idaho.  Chris has a 2-hour evaluation there on Wednesday the 23rd, and then they typically do rehab 3-4 times a week.  Brandy was a sweetheart on the phone and I know Chris will be in good hands.  I mentioned Chris' stitches to her, and she said that over in the ER area they can remove his stitches for free.  Woohoo!  I love a saved trip.

Chris has a benefit called WellDine from Humana that will be delivering 10 cooked & frozen meals to the house.  The meals will be tailored to his renal diet.  I think they'll be delivered tomorrow or Monday.

Other appointments coming up:
 - 5/24 his monthly labs & clinic appointment at DaVita
 - 6/5 back to SLC for a chest X-Ray and follow-up with surgeon Dr. Gomez-Abraham   (and perhaps another test -- waiting to hear from Dr. G's assistant.)

He's Home!

We made the 350+ mile drive home uneventfully.  I had gotten gas the night before, so Chris was able to sleep peacefully almost the whole way home.

Dad helped me unpack the car and we went about getting Chris ready for bed.   First item down the stairs was the dialysis machine.   Then his dialysis supplies.  We set those up.   Then down came the new pills.   I got everything ready for his pills for the whole week.

Tomorrow we have a whole list of places to call and things to do.  Just glad to have him home and healing.

Heading Home

Looks like we're about ready to check out of the hospital!   Chris is already wearing his Denver Broncos jersey and he feels very ready to roll!

We've had visits from Cardiac Rehab and Pharmacy.  We have lots of new pills and new prescriptions.  Now it looks like we're just waiting on the final discharge papers.   We might even get out a little early... 2:00 maybe?

We'll head directly home.   Once there, we'll get the dialysis machine out of the car first.   Gotta get it hooked up so Chris' fluids can be heated up before we his cycle starts for the evening.

Disconnected

By 3:00 this afternoon, Chris' chest tube was removed.  He's not free from the hospital, but he's not connected to any machines right now.  Hopefully this will change in a few hours when they reconnect him to the dialysis machine.  (We just asked Nich to page them and make sure they get Chris connected before they leave to go home like last night.)

Chris took 3 laps around the ward after the dialysis machine was disconnected for the day.

We talked to a preventative cardiology specialist (Galina).  She gave us a cool book (which would have been helpful before the surgery).  She will help us get a prescription for cardiac rehab services when we return to the Boise area.

Meals today were much better.  He even got a visit from the director of nutrition services.  She apologized for the problems and thanked him for the photos & descriptions.  She said she has printed out the pictures of the lasagne to show the staff.

I called to order the free meal delivery from Humana this afternoon.  They need me to call back after he's discharged.  We're hoping that will be tomorrow around noonish, after the X-Ray shows that there's no more fluid building up in his chest.

Annoyed Today

Chris posts:

Well it's been a banner day at the hospital. They still can't seem to understand the no milk/wheat core concept but some people in charge of shit are going to have some interesting emails to read when they come in to work Monday morning.

My pain management could be better because one pill every 6 hours less than a week after open heart surgery just really isn't enough to keep me completely comfortable.

Also after 6 months of being on dialysis I kinda know what I need and how long I need it for but hearing the statement "I have used this machine 3 times" is not exactly filling me with confidence plus all the dialysis people go home after 8 so if you have any trouble they just give half asses explanations over the phone so I had to turn the machine off last night and its been running all day. I'll get maybe a half hour of freedom before they start it up again.

I've also still got one chest tube in so 2 more days minimum before I get to go home.

I'm at the hospital with him.  It's 7:40, and the dialysis machine has been finished for a while.   It should not have even been happening during the day, but they couldn't ever get the machine working last night.   So poor Chris has been hooked up all day and he'll be hooked up all night too.   I came back tonight to go for a walk around the ward with him and to help him back into bed.   But we've been waiting over an hour for someone from dialysis to unhook him from the machine.   He REALLY appreciates his home machine and nurse Jennifer @ DaVita now!

Dr. Gomez-Abraham opted not to order the removal of Chris' chest tube today.   There was still too much fluid draining from his chest.   Tomorrow, he'll look at it again.   It looks like Tuesday for discharge at this point.

Doing Great

Chris is getting better and better!

After the surgery, he had two wires connected to his heart.  They were there in case they needed to attach a pacemaker to regulate his heartbeat.  This morning, the doctor removed those two wires.

He also had two big tubes in his chest for drainage.  One of those was removed this morning, too. 

The big news is that the catheter is out and he has urinated. YEAY!  This was a big concern because he had a terrible experience with the catheter after the December dialysis site surgery.

Dr. Gomez-Abraham told Chris that the 2nd chest tube will likely come out tomorrow and he may be able to go home as early as Monday.  Wow!  I wrote down the phone & fax numbers to the DaVita pharmacy so the doctor can get his meds ordered.

Good Day Goes Bad

Friday morning, Chris was expecting to be moved from SICU to the Cardiovascular unit (CVMU).   We waited for an available room there until 5pm.

His meals were disasters!   He's got quite a few restrictions due to the gastric bypass (no dry foods, no milk) and kidney failure (low-phosphorus, etc.), so nothing they sent up was edible.  The last meal of the day was the absolute worst.  I had to take pictures.   Seriously, somebody needs to lose their job over this one.    Guess what food it is.

Okay, what did you think it was?   Would you have guessed LASAGNA?!   It was solid enough to be picked up and hard enough to *clank* when it hit the plate.   What an embarrassment!

I made a spreadsheet of Chris' medications for this trip, and I went ahead and made a nutrition spreadsheet for him today, too... so everyone down in the kitchen knows what he can & can't tolerate and some additional items that he doesn't like.   Definitely no onions!

Even before he arrived at the CVMU, there was a very nice dialysis tech waiting for him.  She got him all hooked up to his machine.  The connections & machine are quite a bit different than what he's used to.  I stayed in the room with him until midnight, and that machine beeped a lot!  He also drained off lots of fluid.   His feet are still a bit swollen, so they're planning to do some extra draining tomorrow.

Recovering in SICU

Chris spent the day today in the Surgical ICU (or SICU).  Look at all these machines!   And these are only on one side.  There are more on the floor and on the other side.

He spent most of his time on hemodialysis.  At first, he had a very large access site in the right side of his neck.   The doctors decided it was too large, so one of them removed it and placed a smaller one.  The smaller one was held in place with three stitches.  A chest X-Ray revealed that the access tube was too deep in the vein.   A different doctor came in, removed the access and placed a new one.   Luckily, this second doctor was much more concerned with managing Chris' pain.   He numbed the site and gave him an extra pop of meds.   Late in the afternoon, there was a blood clot in the tubing.   The hemo team had gone for the night, so they decided to take him off dialysis for tonight.   His access site has been removed and stitched up again.

He was well enough in the afternoon to have some lunch.   It was a rather dry chicken breast and, due to his gastric bypass, it didn't go down well.   He ate some dinner and also received a bit of a menu for tomorrow to choose meals.  The SICU wasn't very well prepared for the meals, but this is because they almost never have patients well enough to eat meals there.

His mom & I went back to the hotel in the afternoon.   I took a nap and she got some hot tub time.  Chris evidently had a good time while we were gone... complete with a sponge bath.  The only difficulty there was that they rolled him almost all the way over to his front in order to wash his back.

Tomorrow after rounds, they plan to take Chris to the cardiac ward.  Hopefully they'll have his blood pressure and fluids managed by then. 

A Surgical Success

The surgery is complete and it was a success.  Dr. Gomez-Abraham came out to talk to us.

Chris' valve was not in good enough shape, so Dr. G replaced it with a bioidentical cow valve.

In Surgery

We came to the hospital as scheduled at 11:45am.  We got checked in and headed into the pre-op area.   They asked if he had taken the prescription pill and applied the nasal cream he was given... but he didn't receive either of those yesterday.

We got the standard merry-go-round of doctors, nurses, questions, and a shave.   And there was lots of waiting.   And more waiting.   Almost the entire length of Red Dawn.   And then they wheeled him to surgery.  

There's a board that shows each patient and where he/she is in the surgical process.   Right now, it has Chris blocked out for another 3 hours.   It may be longer if they have to replace the valve instead of repair it.   Thanks for all your thoughts & prayers!

Pre-Op Tests

We were at the hospital at 8:30 for tests at 9am.  I thought the nice medications spreadsheet I made was in the box in the car, but a quick search didn't yield any results.  So in we went without the meds list.  *ACK*  It was a giant pain not to have it, but then we remembered that I had e-mailed it to Chris last week for him to print out.  Whew!  I was able to pull it up on the phone.  {Later, I found the pile of pill spreadsheets in the box where I looked!  ARGH!!}

We met with a nurse, the Anesthetist (Dr. Morgan), and the PA (Dr. Allen).  Each of the three went over his medical history and medications {Grr!}  We learned that the bio-identical valve replacement part (if necessary) will not require him to be on any anti-rejection meds.  They gave us a phone number to call to find out the surgery schedule, but they said that the surgery will most likely be very early in the morning.

The nurse took several vials of blood for testing and Chris gave a urine sample.  They were concerned about infection because Chris has a bit of a sore throat and thought there might have been some discharge from his cath site this morning.   If there is any infection, the surgery will be on hold.

Chris got a quick chest X-Ray downstairs in Radiology and then we had lunch at the cafeteria.  We made it back to the hotel by 12:30, in time for a nap before picking up Chris' mom at the airport.   We called for the schedule tomorrow, and it turns out that the surgery won't start until 12:45, so we have to be at the hospital to check in at 11:45.

Chris had a very nice steak for dinner (thanks, Bill!) and is hooked up to the dialysis machine for the night.  He's resting comfortably now.   Tomorrow morning, he has a special soap for his shower that the nurse gave us.

Getting Ready

Poor Chris is still hobbling around on his gouty foot, despite the course of steroids and the medication change. It's making getting ready for the upcoming trip more difficult and arduous, but preparations must continue.

I put together all of Chris' medicines for this week. I made a big spreadsheet of them and made several copies to hand out to everyone that asks next week. I did this for past trips and it has turned out to be a giant time saver. All of the medication bottles are in a Ziplock bag, in case he needs any of them while we're there. (This reminds me, I'll need to add his dialysis/cath site cream... and make sure that the surgeon ads it to his post-op care orders for the nurses!)

We're still going through the list of items that need to be done, scheduled, and packed. Some of the things to 'do' were really things to 'eat'. Chris wanted to have venison (a rare treat for him), so we went to our local Co-op and bought some. He cooked it tonight and it turned out perfectly! Dad loved it, too.

Chris has requested a blueberry coffee cake, but my feet and ankles have been too tired to stand up in the kitchen for that long.  I'm running out of time, so it looks like tomorrow afternoon may be the time it finally gets done.  The blueberries did get washed and dried today.  (Photo is the last one made, in January.)

Dentist & Pre-Surgery Instructions

Chris had his teeth cleaned this morning.  They also did an X-ray, and found three small cavities.  This was shocking because Chris has only ever had one cavity before and he has been taking the best care of his teeth in his life this last 6 months.   He's guessing it's because he's eating a lot differently and consuming a lot less milk since the gastric bypass.

We had quite a few e-mails and phone calls with the heart surgeon's assistant today.   She had several responses to questions we were hoping to have answered before the surgery.   Here's what she said:

• Check in at  “check in” desk in front lobby of hospital at 0830-PRE OP appt scheduled for 0900. (They will get Mr. Ross checked in and then send him to Pre-surgical admissions on the third floor.)
• Meet with anesthesia, get consented for surgery on third floor-(they will have your packet of tests for you, and let you know what time to arrive Wednesday morning at this meeting)
• Nothing to eat or drink after midnight Tuesday, May 1st.   (I hope she means May 8th -- a whole week without food might not be good!  Guess I have to call and double-check.)
• Take medications as usual Tuesday, and continue peritoneal dialysis as usual Tuesday. (Dr. Gomez-Abraham will discuss with Nephrology re:placing access catheter and dialysis after surgery.)
• DO NOT TAKE MEDICATION WEDNESDAY MORNING!

Later, she asked about his teeth and I let her know that he had just had his teeth cleaned this morning.  He had been cleared by Dr. McRae back in November, I think it was, for the kidney surgery.  I gave her his number so she could check in with the dentist.

Tonight, Chris decided to go on an 11-hour cycle with the dialysis machine.   He's in there with both cats.   Here they are:

First, we have Dusty napping on the chair in the dialysis room.

And then there's Digit, Daddy's princess, under the covers(!) purring.  *sigh*  This used be my awesome blanket.  I've even ordered a new one, but it just wasn't the same so I sent it back.  She better keep her paws off my husband!

Right now, I hear "Are you warm and comfortable, Digit?   You look warm and comfortable."

DaVita & The List

Thursday Chris had his monthly DaVita appointment.  There were lots of topics discussed, mostly surrounding his upcoming surgery.  He did get some EPO and the doctor and new PA (also named Chris) checked out his gouty foot.

Jennifer and the PA allayed some of our fears about the hemodialysis.  Chris has been very worried about having the access site in his neck.  However, they told us that it would be a central line in his chest.  This is awesome for a lot of reasons, one of which is that they can also use this access site to give him medications and test his blood.  Yeay for fewer needle-sticks!

During one of the discussions with DaVita staff, Chris got an unexpected call from Heidi, the transplant coordinator at U of Utah.  She had presented Chris to the committee and he has been approved for the transplant.   This means that he's officially on the transplant list, and starts accruing time starting April 26th.   *happy dance*   He won't actually be able to have the transplant until he's 6 months out from his heart surgery, but it's awesome that his clock has started.

Heidi said that Dr. Gomez-Abraham is going to want to see Chris back in SLC for follow-ups about a month or so after the surgery and then again at about six months after.  Heidi wants us to let her know when we schedule the 6-month trip so Chris can have some time to meet with her.

We mentioned that Chris was scheduled for a teeth cleaning tomorrow, and Jen was concerned about the antibiotic that the dentist prescribed.  We called her after stopping at Walgreen's to pick it up.   She told Chris to take 4 pills about an hour before his appointment tomorrow.

Plans & Protein

Yesterday we got the thumbs-up from the insurance folks for travel.  They booked a hotel for us.  It wasn't our usual place, but we checked it out online and it seems just fine.  There's a fridge & microwave in the room, which is something our last hotel didn't have.  Plus they have airport and hospital shuttles.  Necessary things like free Wi-Fi (for me) and coffee maker (for Mom-In-Law) are also included.

Although we're supposed to be getting Whole Foods and Chick-Fil-A in our area within the next 6 months, I'm still looking forward to having some of my favorites while in SLC.  Hey, I know this isn't a vacation but I'm trying to seek out some little positives.  Oh, and Chris' friend K. offered to show MIL and me a new mall and grab some sushi.  I really enjoyed meeting her during one of our previous trips.

Speaking of thumbs-up, we got some good news from the Heidi (the transplant coordinator).   She said that once she gets word that Chris' heart surgery was successful, she can present his case to the transplant committee at their meeting the very next day!   Since his heart was the last hurdle, she said he can get approved and start accruing time on the transplant list right away.  Awesomesauce!

Today we heard from Chris' nutritionist from DaVita.  We normally see her during our monthly appointments, but she's going to be out of the office then.   She said that everything looks good from his recent bloodwork, except that his protein is low.  Looks like I have to hide the Chef Boyardee and invest in lots of boneless skinless chicken breast while it's $1.99 a pound!


Next Week:  Chris has his monthly kidney appointment @ DaVita on Thursday and his teeth cleaning Friday.  Keeping his pearly whites very clean and, most importantly, germ-free, is key... especially since he might need to be on immunosuppressive drugs sooner rather than later.

We Have a Date

We spoke to Dr. G and we have a date for the surgery:  May 9th.   He has asked that we come to SLC on the 7th and have Chris available for testing on the 8th.

He also said that Chris' surgery will NOT include the aorta replacement.   The ascending aorta is not as dialated as he feared, so that procedure will not be necessary.   Once the valve is better, the ascending aorta will not continue to deteriorate.

Speaking of the valve, he is going to try to repair it with Chris' own tissue first.  If he doesn't have enough tissue to work with, or if the repair doesn't work as well as he would like, then he'll replace the valve with bovine tissue.

So two happy things:  a date to shoot for and a surgery with significantly reduced risk.   Yeay!

Lots more work to do before May for me... need to have the surgery and the travel pre-authorized for insurance purposes.   Already working with Dr. G's medical secretary for the information we need to file all that paperwork.

Also, nurse Jennifer called.   They want Chris to come in for an EPO shot on Wednesday afternoon, so we'll head to DaVita for that.

Pseudo-Aneurysm

We went to the Vascular Lab at St. Luke's Eagle this morning.  Chris had an ultrasound on the painful cardiac catheter site in his groin, at Dr. Mallea's request.

It turns out that Chris has a pseudo-aneurysm at the site.  However, it's small and doesn't seem to need immediate treatment.   Here's some information from Wikipedia:

A pseudo-aneurysm is a collection of blood leaking completely out of an artery or vein, but confined next to the vessel by the surrounding tissue. This blood-filled cavity will eventually either thrombose (clot) enough to seal the leak or rupture out of the tougher tissue enclosing it and flow freely between layers of other tissues or into looser tissues. Pseudo-aneurysms can be caused by trauma that punctures the artery and are a known complication of percutaneous arterial procedures, such as arteriography, arterial grafting, or use of an artery for injection, such as by drug abusers unable to find a usable vein. Like true aneurysms, they may be felt as an abnormal pulsatile mass on palpation.

He will follow up with Dr. Mallea on Thursday the 5th of April.  However, he'll need to go to the ER if the site gets any more painful, red, larger, or hot.

Heart Surgery Coming in May

Chris spoke to nurse Jennifer and Dr. Gomez-Abraham {Dr. G} while I was out running errands this morning.   Here's what he relayed to me:

Dr. G recommends that Chris' ascending aorta be replaced, along with the repair of the valve.  He said he could do it in two weeks, but Chris felt that was too soon.  Dr. G is going to be in Europe at a conference for about 2 weeks, but he could do the surgery in the beginning of May when he returns.  Chris agreed to that.

Dr. G said that Chris can't do peritoneal dialysis (PD) during the heart surgery, so he'll have to do the hemodialysis during that time.  We'll work with Jennifer to transition to the blood dialysis when the time comes.

Chris will have to be in the intensive care unit in Salt Lake City for several days and in the hospital a total of 7 to 14 days while recovering from the surgery.   General recovery at home will take about five or six months, if the patient is in good health. Patients are advised not to do any heavy lifting for 6 months after surgery, to avoid damage to the sternum (the breast bone).

At the beginning of next week, Dr. G will call us again with more information.  At that time, I hope to get an exact surgery date so I can get everything coordinated with insurance, travel, etc.  I'll post an update as soon as we know anything further.

Not sure whether/when Chris could go back to the peritoneal dialysis (PD) after the heart surgery.  Need to find out about that.

Tomorrow at 9am is Chris' ultrasound on the catheter site from the angio.  It's still hurting.

Heart's Looking Good, Considering

We had a standard appointment with Jennifer today, and then a follow-up with Dr. Mallea to go over the results from Salt Lake City.

He said that Chris' heart, aside from the aorta and the valve, looks really good.  Heart function is about 70%.  Nothing seems to be blocked or calcified.   He said that it looks great for a positive outcome.

Chris is still experiencing pain from the catheter site in his groin area, so Dr. Mallea took a look at it.  He was concerned about the possibility of a hematoma there, so he's prescribing an ultrasound for Wednesday.

Still waiting to hear from Dr. Gomez-Abraham about his surgery recommendations.   We'll call Heidi, the transplant coordinator, tomorrow because she doesn't work on Mondays.

Brokenhearted

This was such a busy trip!   So many procedures and so much driving in under 40 hours!  Chris was a trooper... with tubes down his throat, needles everywhere, wires in his heart, etc.  We learned a lot, but not what we were hoping to hear.

After all the tests were done, we met with Dr. Gomez-Abraham.  He had been a kidney transplant surgeon in the past, and now works with heart & lung transplants.  This expertise is why the transplant team looked to him for his opinion.

He saw something in these tests that we hadn't anticipated.  We thought it would be a simple fix-this-valve-first or transplant-this-kidney-first.  We never thought there would be more to it than that.   But there is.

In addition to his leaky (and congenital bicuspid) aortic valve, Chris' aorta is enlarged and if left untreated will continue to get larger and cause heart failure.  This means that (at least at the University of Utah) the kidney transplant is off the table unless and until Chris has a repair or replacement of the aortic valve and ascending aorta.

Dr. Gomez-Abraham is going to consult with another experienced heart surgeon.  He will then let Chris know what type of repair(s)/replacement(s) they recommend.  Then Chris needs to decide how he wants to proceed.

Chris' favorite part of the trip was when Dr. Gomez-Abraham asked if his mother had any questions.  HIS MOTHER!?  SERIOUSLY!?  He thinks I'm 20+ years older than my greying-bearded husband?!   "Mortified" doesn't begin to describe how I felt.  I must need a makeover.

Right now, Chris is still recovering.  He's on dialysis to get the dyes from the TEE and the heart cath out of his system.  He's also got some pain from the cath site, as well as some significant movement restrictions for the next couple of days.  I've been helping out with the lifting.  (Those dialysis bags are heavy!)

Thanks for all the prayers & good wishes.  They really do help.  We'll need more of them when you get a chance.

The Cycler, Another Test & Some Snow

The cycler has arrived and Chris is using it each night.  It's pretty noisy, but he's getting used to it.  One thing that's driving him nuts is the "initial drain."  Chris doesn't have any dialysis fluid in him during the day, but the machine tries (hard!) to drain him before starting.  It won't let us bypass that function, either.

All of last week's lab results were good, so he didn't get EPO or iron shots.

Since the last post, another test has been added to Chris' schedule in SLC:  a cardiac catheter.  This concerns me because it involves injecting him with dye that I fear is harmful to his kidneys.  We checked with Dr. Mallea at the monthly meeting on Thursday, and he said that (a) it won't necessarily do more harm to his remaining kidney function since he's on dialysis and (b) we can't move forward without it so he needs to have it done.

Oh, and as we're prepping for the trip, check this out!  It'll be slushy and snowy and all sorts of fun.  Guess we'll leave extra early for our wee-hour morning trip.  (His first procedure is at noon on Monday, and it's a 5.5 hour drive in good weather/traffic -- according to Yahoo! maps: Distance: 358.34 miles — Time: 5:30 h)

At each of his procedures tomorrow & Tuesday, he'll be seeing different providers.  Each of them will ask him what medications he's taking.   I made up a spreadsheet in preparation for the trip and I will print out a handful of copies.  This comes in very handy and definitely beats trying to remember it all.   On each list, I'm also going to print a request for them to fax the results of the testing to Dr. Mallea.   We'll do a follow-up with him on Monday (Mar. 26th) to see how everything went.

I'll post here during the trip if there's any news.

More Heart Testing on the Horizon

Chris got his expected call from Heidi this morning, but it said that we'd have to wait until next week for a decision.   She got back to us this afternoon, earlier than expected, but not with a "yes" on the surgery.

Dr. Gomez-Abraham wants to see Chris in Salt Lake City before he makes a decision and wants to have three more sets of tests done:

• TEE (Transesophageal echocardiogram) where they stick an ultrasound tube down his throat to get better pictures of the heart
• CT scans of head, neck, and pelvis
• Carotid Artery Ultrasound

Heidi has gotten in touch with the doctor's office to get these tests scheduled.  They're coming up fast...  March 19th and 20th.

Also Coming Up:  Monday afternoon we'll get trained on the nighttime dialysis cycler and take it home to start using it.  Thursday is Chris' big monthly dialysis appointment.

No Cycler Today

We were planning a lengthy training appointment at DaVita today.   Chris was scheduled to get his nighttime dialysis cycler machine.   Unfortunately, Jennifer is sick today and DaVita called to cancel our appointment.

The folks at U of Utah are supposed to be discussing Chris' case with a heart specialist.  We're supposed to find out Friday if:

• they can go ahead with the kidney transplant
• the heart valve needs to be repaired or replaced before the kidney transplant
• the heart people need to see Chris in SLC again before they can decide

His next appointment with DaVita is scheduled for Thursday the 15th.   I don't think he has enough supplies to do his dialysis the regular way until then, so I'll have to go pick some up.  We'll have to let them know when we reschedule to cycler training.

Monthly Clinic Meetings

We had the monthly clinic meetings at DaVita this afternoon.

Met with the social worker very briefly.  Then we sat down with Jennifer.  She went over the labs results from blood taken last time. 

• Albumin 4.1   (protein stores are good)
• Potassium 3.7  (potassium is down, this is very good)
• Calcium  8.4   (good)
• Phosphorus 4.2  (down from 7.5 & 5.0, this is great!)
• PTH 786  (was 829 & 776 -- not down enough.  Need meds.)
• Hemoglobin 13.1  (up from 8.7 & 11.9, he has made some blood)
• HGB A1c 5.8   (very good blood sugar control)
• KT/V 2.47   (Adequacy of Dialysis is good... meaning his dialysis is working and his blood is being cleaned well

Dr. Mallea made some changes to Chris' medications.  Sensipar will need to be taken with the big meal of the day, to help keep the PTH (Parathyroid hormone) levels down.  Chris will also be dialing down the Prednisone and moving it to morning.  And Uloric is moving to every other day.

Due to the new morning/night pill scheduling, I re-did Chris' pills in a new container to accommodate mornings & nights.  I added his Gastric Bypass vitamins to both, so he won't have to remember to take them separately.  Hopefully this will increase his vitamin intake and absorption.

Dr. Mallea asked Jennifer to follow up with Dr. Undesser's office to get a copy of the echo and then to forward it to the folks at the University of Utah transplant team.

We'll be back at DaVita for regular weekly labs on March 1st, and then the big monthly clinic appointment on March 15th.

Checking Out the Heart

Today, Chris had his echocardiogram at the cardiologist's office.   All went well, he said.

We also got the big monthly shipment from Baxter.  The delivery came while Chris was out, so I got to interact with our rep.   He delivered only supplies for the nighttime cycler machine, so Chris will be getting on that later this month.  Yeay!

Two Clinic Visits Today

Chris had his (re-)scheduled appointment with nurse Jennifer today.  It was a surprisingly brief visit.   His last blood tests showed that his red blood cells were doing a bit better, so he didn't get an EPO shot.  She did take some blood, however, to test before the next visit.

When we got home, it was time for Chris to drain his first fluid of the day.  Only 700ml of the 2000ml would come out.   He tried everything... re-adjusting the tubing, standing up, etc.   He called Jennifer and she had us come back out.   She injected Heparin (a blood thinner) and another substance into his tubing and also into his fill bag.   This seemed to help a lot, and everything drained in and out as it should have.

Coming up, we have our big monthly clinic appointment on Wednesday of next week.  On Tuesday the 21st, Chris has his big echocardiogram appointment with the Cardiologist to see if his heart condition improved enough with the dialysis to allow the kidney transplant to take place.   Fingers crossed!!

More Tests & Shots

This week's appointment required Chris to come in right at the time he would normally drain out his dialysis fluid.   Nurse Jennifer did his drain, instead, and they sent the fluid out for testing.   They took blood, too, for the test.   We're hoping Chris can go on the nighttime machine.

Another test they took blood for is the Thyroid test.  Luckily, Chris remembered that that the nutritionist wanted that.

He got iron and EPO shots.   He also got his least favorite thing:  urine collection jugs.   He hates those!   At the next appointment, on Feb 1, they're going to have Chris bring a full day of urine and a full day of drained abdomen fluid.   They'll test both (probably along with more blood) and see how he's doing.

We're also scheduled to get a supply delivery on the 24th.

Lab Results & Some Upcoming Tests

Went to DaVita today and met with nurse Jennifer and Dr. Mallea.  The highlights:

• Test results from blood taken last week are in.  Chris is doing much better with phosphorus (thanks, at least in part to Renvela medication).  White blood cells are down a bit, but not enough to cause concern.  His EPO and iron shots seem to be working.  His body has made one unit of blood.   He did not have EPO or Iron shots today, but will get them every other week instead.
• The nutritionist wants to test thyroid hormone the next time he gets blood drawn.  His protein is a little low, so he should try to eat more.
• Chris can start taking his daily aspirin again.  It thins the blood and he had to discontinue it due to the surgery.
• Chris is going to have a peritoneal equilibration test (PET) next Tuesday (1/17) to determine whether he's a good candidate for the nightly automatic peritoneal dialysis machine.   Dr. Mallea did some calculations based on the numbers Chris presented on his spreadsheet (fluid in/out, etc.) and thought Chris would be on the high to high average range and would probably be a good candidate.   For this test, Chris will use the highest concentration dialysis fluid in the morning and then the nurse will drain and test it to see how quickly he is expelling waste.
• Jennifer told us that there are different immunization guidelines for people with kidney failure.  Chris has had 2 of a series of 3 Hepatitis B immunizations, but Jennifer said that Chris will need 4.  She's going to do his 3rd at our next visit (1/17) and then the 4th in 6 months.

I spoke to Heidi, our transplant coordinator at U of Utah.  She said that their heart folks said Chris needs to have an echocardiogram done after he's been on dialysis for 6 to 7 weeks.  That brings us to mid-February.  I scheduled that appointment with Dr. Undesser for 2/21.  Heidi said she'd fax an order to his office for this, since Chris has had one within the past year.

Chris spoke to the people at Baxter to order more supplies.  He wasn't sure what to expect since it's our first time ordering and because he'll hopefully be using the cycler machine by this time next month.  Jennifer advised Chris to only order about half a month's worth.  The rep. on the phone was very helpful and we'll be getting our Baxter order in the beginning of next week.  They bring us boxes & boxes of the dialysis solution, plus all kinds of dialysis supplies like gauze, caps, masks, cleaning fluids, etc.  Their delivery people bring everything right downstairs into his dialysis room and even rotate the stock to keep everything fresh.  Love that!

Goodbye, Glasses!

It's been about 2 weeks since Chris started asking me to schedule an appointment to get his prescription updated so he can get some new glasses.

His appointment was this afternoon.  Guess what?   Instead of getting new glasses, the doctor suggested that Chris no longer wear any glasses.   If he doesn't wear the glasses for a week and doesn't get any headaches, the glasses are gone.  Wow!

Is it possible that the lower blood pressure or the dialysis was causing Chris' eyesight to improve?!