Saturday, June 16, 2012

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.

Thursday, June 14, 2012

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.

Wednesday, June 13, 2012

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.

Thursday, June 07, 2012

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.  ☺

Wednesday, June 06, 2012

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.

Tuesday, June 05, 2012

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.

Saturday, June 02, 2012

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.