Tuesday, May 14, 2013

3-Month Follow Up & Neurologist

Today we drove down to SLC and back for Chris' three-month follow-up appointment for the kidney. Everything looks good there, so we're going to come back for the 6-month in August. Before the kidney meeting, we saw a really great neurologist for Chris' worsening tremor. She was able to give us a more specific diagnosis (because she's a movement disorders specialist) and hopefully assign him a more specific drug to work on reducing the tremor. Her name is Lauren E Schrock, MD, and we thought she was great.

Wednesday, February 20, 2013


We got the call on 2/19 in the evening and drove to SLC. Hit white-out conditions on the way, but made it safely. Kidney was transplanted on 2/20.

Friday, January 04, 2013

So Far So Good

So this week started out with seven scheduled appointments, but we ended up with NINE doctor visits.   But (a) we survived it and (b) we both got some good news!

Chris' mole was benign (YEAY!) and the doctor said they did get all of it.  Also, his stitches are out.  

The kidney folks think the infection is not at the site of his catheter, but maybe a hair follicle under the skin or something like that.   He's on a fourth round of oral antibiotics starting today.

Kim's long-term blood sugar [A1C] was down to 6.5 (it was 7.0 in July and 6.7 in October), so that's great!  Kim was worried that it would be much higher because she has admittedly been indulging in some after-Christmas discounted holiday candy.  (Can't resist a bargain!)  Also, her blood pressure was so low that the doctor scheduled a 1-month follow-up to determine whether her blood pressure meds should be reduced or withdrawn altogether.

Next week will be much more mild, with just the counseling appointments for us both on Monday and then Chris has physical therapy/rehab on Wednesday & Friday... and maybe a visit to DaVita to show them the infection near his exit site.  A relaxing week!  :)

Monday, December 31, 2012

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!

Thursday, October 11, 2012

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.

Friday, September 21, 2012

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.)

Wednesday, September 19, 2012

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.