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.