Living In Grace

Update / Prayer Request

Hi y'all,

Sorry for the absence. My days are not my own yet.

If I could bear to ask you to pray for these specifics, I would be grateful.

I am currently in hemodialysis Tues, Thurs and Saturday. That is my day.

The "recliners" we are in are killing my joints. I am no longer able to bend my knees, which means I basically cannot walk right now. The pain in too great, and the meds I have been given are not touching it. So, days ot in dialysis are pent right now basically in bed because my legs donn't want to do what they should.

Bedrest, hemo, rinse, repeat.

Otherwise, I feel better.

I see the next surgeon Monday for my date and analysis for my fistula (the permanent graft in my arm for emo). So, Mnday night I should have another surgery date in hand. Ick.

However, my labs are looking better, so hopefully I am closer to being listed locally (in Oregon) for transplant consideration.

I will update more as I can.

Know I think of you all often and miss you terribly.

Yep. it's the Flu

We are currently channeling the flu through our house, with me being the lucky recipient at the moment .....

Update, of a kind

I was given a reprieve and allowed to come home to get ready for the next surgery, since it's not clear how well I will tolerate it right now.

I am starting hemo, which is not going well yet. Case in point, Thursday ended with John watching me be taken blue and in an ambulance to the emergency room.

Not a great day for any of us, so if you could be paying that we figure out why I'm not tolerating things and unable to maintain a steady blood pressure I would appreciate i.

I will give more details of our care plan tomorrow. Sitting is still a struggle, and it's been an extremely long day.

tues- on way tosurgery now

getting temp hemo cath now

in the hospital, monday

Declined over the weekend, saw the drthis morning, admitted me. will be here about 2 weeks, at st. charles med center 51.382.4321 room 405. i will update on the surgery schedules as we go.... thankks everyone!

Friday Oct 9

Friday is the biopsy of my neck prior to scheduling the first of three surgeries. If you could be praying for clear results and a painless process. Thanks!

Update/Prayer Please

In really rough shape. Could use prayer. More later. Tyvm

Day One.

Today we met with the first surgeon, Dr. Frei. He will be performing the first two surgeries, the parathyroidectomy and the removal of the adenoma on my thyroid.

We initially met with his Physicians Assistant, I can'[t recall his name. He was abrupt, businesslike and honestly scared me to death. The first question I had for him was whether or not I would be meeting the surgeon today .... you know, the one with the degree and training, the one to hold the knife.

He came in shortly after and sat directly across from me, almost knee to knee. He was in his 60's, grandfatherly but totally honest about everything we were looking at.

Needless to say, there was alot of detail we didn't get yesterday in our fist run through with Dr. Feldman. And the devil, as they say, is in those details.

The risks and potential complications of this first surgery are huge. Dr. Feldman had initially thought we could do these procedures, and put in the hemo graft, all in the same surgery.

Dr. Frei put the nix on that for one reason, mainly. This surgery is so delicate, and unpredictable- and add the issue with the adenoma on my regular thyroid, and we could be looking at over 6 hours of time under anesthetic. The longer you are under, the more risk you take.

So. BOttom line?

In the next three months, I am looking at a minimum of three major surgeries.

If the last recovery is any indication, I should be on bed rest for the better part of those three months.

After this first surgery, I Will be in hospital for several days on a calcium drip. Since this set of glands they are removing monitor your calcium levels or something, they have to blast me full of calcium between now and the surgery (2-4 weeks out) and then watch me closely for the first several days.

The dangers of losing those glands are evidently pretty substantial, so the plan of action is detailed..

Scared?

You bet.

We all are. Stunned, actually.

If I can lay out some specific prayer requests, please?

1. Peace for all of us. And the ability to absorb enough to understand and make good decisions.

2. Solid recovery after each surgery for me. Quick recovery with no complications.

3. Peace for John. As you know, he has been blessed enough to work from home these past few years. That is coming to an end, and he need to find a job that will provide for us financially, be the hours he needs (swing shift- so he can drive me to and from hemodialysis three times a week for the next several months), provide he and the kids with insurance, and not be such a taxing job that he can just walk out at hie end of the day and leave that stress behind him.

 4. Peace for the kids.  I fear Kati is taking on too much around here, but I'm powerless to  help. Jonathan just wants to make sure everyone is ok.

It's too much for teens. And unfair.

5. A more complex request. We moved here to be near the best medical care. We have no physical support system here. Things that concern me with long term recovery are things like transportation to/from Dr. visits, meal preparation and those day to day things. If God could find a  way to take the burden of some of these day to day things off the shoulders of John and the kids, what a blessing.

I may have left a lot out, but I'm still absorbing and processing ....

I think I need to now go tuck my self into bed and just forget today for a few hours. Enough reality awaits me in the morning....

Good night my dear friends.

Our Lives. In Fast Forward.

Wednesday:

10:40    Drop Jonathan at school

11:15    Cat to Vet

1:05     Pick up Kati and Jonathan from school

1:15    Meet with first surgeon - discuss removing parathyroid and nodule on regular thyroid

3:00    Drop Kati back at school for play rehearsal

5:00    Pick up Kati from play rehearsal

5:05    Figure out dinner, breathe, get on 12 hours of dialysis due to early morning

Thursday

8am    Kids to school for makeup picture day

8:30    Hit the road to make 2 hour drive with two cars to return on the car to grandma

10:30    Get to grandma's, visit

11:30     Hit the road for two hour drive back home

3pm    Dr appt for Kati

4pm    Dr appt for Kelli

5pm    Figure out dinner, breathe, get on 12 hours of dialysis early due to yet another early morning

Friday

1pm    Meet with Neph to talk about protocols for pre-surgery

2pm    2 hour Vein Mapping for hemodialysis fistula surgery

Saturday/Sunday

Nothing. Absolutely Nothing that does not involve my husband and kids (well, except the whole grocery shopping for the month thing and trying to figure out easy things for Kati to do with my multiple surgeries and the expected recovery times planned)

Monday

8am    Meet with the Vascular surgeon to coordinate several surgeries planned:

        - Removal of the parathyroid

         - Reinstalling a portion of the parathyroid into my arm

         - Installing a fistula into my arm for permanent hemodialysis

         - Removing my peritoneal catheter from my belly

        

then, finish the week's schedule with Dr appts, daily play rehearsals, meals, blah, blah, blah

So.

I ask.

Doesn't this make your week look mighty fine?

My Pleasure!

You're Welcome :)

Dear Daddy,

Daddy.

I am unable to sit and talk with you face to face, yet, since you went to Heaven 5 years past. But, I miss you.

Horribly.

I realize that you know now what has been going on with me, and with my family, since you have a front row seat up there. But, not having you here to talk with about it is so hard.

Dad, I'm tired. I am terribly tired of feeling drained out and unplugged every moment I'm awake. It's like a creeping feeling that comes over me as I wake up. Fist, I'm all excited fo the day, then the thought of rolling over (and the pain)and getting up (with more pain) sets in and I want to get back under the covers forever.

I am only 45. I have so many years ahead of me here, and yet I think, "Will every day be like today, and yesterday, and the day before?"

The stress it's putting on John, having to watch me like this every day, is crushing him. He won't talk about i, but I see it. And I feel it. We both feel the weight of me.

If you were here, I could talk to you and get strength from you. I worshiped you, you were my best friend- even in hard times,

I could talk to you about my inability to function as a part of this family. How Kati cooks almost every meal, carries her schoolwork, the house and everything else. So much for someone so young. It's not right. But, when I cannot basically get out of bed to help, what else can she do?

I need a miracle. I need a kidney. I need my life back.

This is not the way it's supposed to be.

Could you talk to God for me?

Maybe He will listen to my daddy.