8 p.m.

Thanks for checking in.

The UCSF blood panel results from last week were reported today.  The Primary Amyloidosis remains in remission…obviously great news. 

Yesterday at dialysis Irene had another needle episode which resulted in terminating the treatment early.  Last night was rough and she had dialysis again today as a “make up” for the time she missed.

She returns tomorrow for her usual Wednesday treatment.

This evening the nausea is raging. 

Dialysis on Monday, Tuesday and Wednesday this week…in addition to to the upcoming Friday, isn’t something that she looks forward to…but is grateful for the provision of LIFE.

When It Pours, He Reigns…thanks for caring,
Dave

Today, we ran into Cathy Schroeder @ UCSF.  Cathy is a Mantel Cell Lymphoma survivor and just returned from a vacation trip to Peru…!!!  Her stem cell transplant was in August 2007.  We met her @ UCSF when Irene was undergoing her stem cell transplant for Primary Amyloidosis in June 2007

Dr. Lloyd Damon, Irene’s Oncologist, is all smiles as Irene defies the odds and continues in remission from Primary Amyloidosis.

Thanks for caring,
Dave

7 p.m.

It’s MONDAY…the most challenging dialysis day of the week.  The nausea is RAGING…and it’s off the 1-10 scale this evening. 

Candidly, it’s really difficult to standby and watch this degree of suffering…especially when most people see her on non-dialysis days and wonder what the fuss is all about because she lives above her circumstances, keeps a smile on her face and successfully masks the ongoing waves of nausea.  Irene really does have, in many people’s view, an invisible disability, even though she has kidney dialysis 3 days a week. 

My virtual friend, Wayne Connell, addresses this chronic matter with his good work at http://www.invisibledisabilities.org/.

Hopefully Irene will continue with her routine…which is to recover by tomorrow morning, after tossing and turning through the night like a fish out of water because of the nausea and insomnia, another symptom of kidney failure. 

Our colossal and unrelenting enemy: Primary Amyloidosis…the cause of which Irene has been on this ruthless journey for 4 1/2 + years.

Thanks for caring,
Dave

8.30 pm

Thanks for checking in.

Yesterday after dialysis, Irene’s nausea was literally ‘off the chart”...her words, not mine. 

We use the 1-10 scale so I can better understand where the nausea “surf” is…it’s always present…it’s just that the surf is up…or managed.  So, after she was a “fish out of water” all night trying to find that comfortable position, she bounced back today and the nausea hovered betwen a 4 and 5.

So, she had a reasonably good day and keeps on smiling…

...amazing is all I can say…

Thanks for caring,
Dave

7.30 pm

Thanks for checking in!

Irene had a rough day and evening after dialysis yesterday but the “comeback” kid did it again today:

  *  She visited a fellow dialysis patient at the hospital who had her leg amputated yesterday. :(

  *  She ran errands. (no, she really drove!!!) 

  *  She picked up Vince from day care and they “played” all afternoon. 

  *  She enjoyed dinner this evening with Jocelyn, Jordan and Vince.

...she IS like the Timex watch…that takes a lickin’ and keeps on tickin’...

Thanks for caring,
Dave

“Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.” —Sir Winston Churchill, Speech in November 1942

I can hardly believe that it’s been 10 years since that horrific day on September 11, 2001.  Our homeland, the United State of America soil, was savagely attacked by ruthless terrorists determined to destroy the founding father’s vision of FREEDOM…the driving PRINCIPAL for which every thinking American aspires. 

As we commemorate the HEROIC efforts on 911 we will NEVER FORGET those who gave of their lives to save lives.

I am quickly reminded about how fleeting life can be as Irene “fights the good fight” of faith on an enduring bed of suffering.  Her signature smile, joyful and buoyant spirit, faith, poise and tender persona, will be her legacy forever.  For she daily teaches all of us how to LIVE ABOVE her adverse CIRCUMSTANCES, determined to overcome in every way on this arduous journey. 

Irene models Churchill’s words in her personal life, that “…this is not the end.  It is not even the beginning of the end.  But it is, perhaps, the end of the beginning.”

Perhaps it is the “end of the beginning” along the marathon of life…that which begins on this earth and continues into eternity with an anchor bound faith and trust in Him who gives us life.

Thanks for caring,
Dave

Today Irene received a 4/55 Birthday well wish from the UCSF Blood Center Staff which was signed by all of their members…!!!  It was inspiring to receive and moved Irene to tears.  We’re so grateful for all that UCSF represents…the giving of their lives to save lives.

Thanks for caring,

Dave

Thanks for checking in,
We learned today from Dr. Charles Eichler @ UCSF that he used a cadaver artery/vein for the fistula revision surgery three weeks ago.  This was new learning and explains why the surgical procedure took 2.5+ hours.  This was our first interaction together with Dr. Eichler since the surgery was performed.  Today the sutures were removed.  The fistula revision is performing its job at dialysis because the “stealing” has stopped but Irene’s thumb has lingering numbness which we hope dissipates over time.  She returns to UCSF for an Ultra Sound test on October 27.

Irene will also return to UCSF on October 6 in the Oncology Ward @ UCSF to see Dr. Damon for her quarterly Primary Amyloidosis test.
Thanks for caring,
Dave

The Wife of Noble Character

10 A wife of noble character who can find?
  She is worth far more than rubies.
11 Her husband has full confidence in her
  and lacks nothing of value.
12 She brings him good, not harm,
  all the days of her life.
13 She selects wool and flax
  and works with eager hands.
14 She is like the merchant ships,
  bringing her food from afar.
15 She gets up while it is still night;
  she provides food for her family
  and portions for her female servants.
16 She considers a field and buys it;
  out of her earnings she plants a vineyard.
17 She sets about her work vigorously;
  her arms are strong for her tasks.
18 She sees that her trading is profitable,
  and her lamp does not go out at night.
19 In her hand she holds the distaff
  and grasps the spindle with her fingers.
20 She opens her arms to the poor
  and extends her hands to the needy.
21 When it snows, she has no fear for her household;
  for all of them are clothed in scarlet.
22 She makes coverings for her bed;
  she is clothed in fine linen and purple.
23 Her husband is respected at the city gate,
  where he takes his seat among the elders of the land.
24 She makes linen garments and sells them,
  and supplies the merchants with sashes.
25 She is clothed with strength and dignity;
  she can laugh at the days to come.
26 She speaks with wisdom,
  and faithful instruction is on her tongue.
27 She watches over the affairs of her household
  and does not eat the bread of idleness.
28 Her children arise and call her blessed;
  her husband also, and he praises her:
29 “Many women do noble things,
  but you surpass them all.”
30 Charm is deceptive, and beauty is fleeting;
  but a woman who fears the LORD is to be praised.
31 Honor her for all that her hands have done,
  and let her works bring her praise at the city gate.

Proverbs 31:10-31

A psalm of David

1 Blessed are those who have regard for the weak;
  the LORD delivers them in times of trouble.
2 The LORD protects and preserves them—
  they are counted among the blessed in the land—
  he does not give them over to the desire of their foes.
3 The LORD sustains them on their sickbed
  and restores them from their bed of illness.

Psalm 41:1-3

8 p.m.

Thanks for checking in…!!!

Irene did well with the revised fistula at dialysis today.  This is a HUGE development!

We’re very grateful for UCSF and Dr. Charles Eichler’s surgical expertise. 

She’s still experiencing NUMBNESS in the fingertips of her right hand but we obviously hope that this diminishes over time.

She’s recovering this evening from a very rigorous week. 

Thanks for caring…and rejoice with us…!!!
Dave

6.30 p.m.

Thanks for checking in…!!!

Irene was discharged from UCSF late this morning and is now resting at home.  She’s still using heavy pain meds and the numbing continues in the fingertips of her right hand.  We’re obviously hoping this awkwardness goes away quickly…!!!

Dr. Eichler said that the fistula revision can contempate use tomorrow at dialysis.  Hopefully the colossal pain she was feeling will now be minimized…only time will tell. 

She’s scheduled to be re-examined by Dr. Eichler at UCSF on August 18th.

Thanks for your continued care and prayer,
Dave

9.30 p.m.

Irene’s body doesn’t know if it’s coming or going…

Yesterday’s very invasive angiogram procedure @ UCSF went well and she was up for the challenge of today’s early morning dialysis followed by the 2.5 hour surgery relative re-engineering her fistula. 

Her dialysis treatment at UCSF this morning was only 2 hours because the pain and discomfort was too much to continue.  They were able to get her to “dry weight” but were unable to remove all of the toxins that would have been removed in the last hour.

UCSF decided this evening that they needed to keep her one more night for observation since she’s still trying to come out of the anesthesia (my uneducated guess is that it’s tied to the dialysis and lack of her body’s ability to clear it through normal kidney function).  She’s also battling nausea and right arm pain this evening.  Her entire right hand is numb but the medical team said that is normal following the procedure today and should dissipate over time.

Dr. Eichler performed the surgery today and remains hopeful that progress has been made.  He wants to see Irene in his UCSF office within the next 2 weeks for a post-op exam.

The Primary Amyloidosis still remains in remission but it’s damage lingers on…

Hopefully she’s discharged in the morning!!!

The entire team @ UCSF ROCKS...!!!

Thanks for caring,
Dave

1 p.m.

Irene made it successfully through dialysis this morning! YAY!

She's resting and recovering through a typical post-dialysis day, knowing that she needs to muscle it through Monday's 3 1/2 hour session...then admitted to UCSF on Tuesday.

Thanks for caring,
Dave

12.30 p.m.

Thanks for checking in.

Irene had a massive needle infiltration today, which has pre-empted her from completing dialysis treatment. She's home icing the significant swelling. She returns tomorrow morning where they will endeavor to get her through a complete session.

http://www.mcrh.org/Hemodialysis/35759.htm

Thanks for caring,
Dave