Living In Grace

A Test of Faith

Being chronically ill, well, it's tiring. Hard, stressful.

When you have kids, it's harder. Especially when they are old enough to "get" it. You see the fear behind their eyes, hear it in the questions they don't ask, the unexpressed anger. More crushingly, you see it in the way they seek to do everything for you, like you're fragile glass that may shatter at any moment, leaving them alone with no notice if they fail.

Your marriage is strengthened in so many ways, but strained in so many others. All those dreams, plans, promises made in long walks and dark nights- will they still happen? Although in our heads we are told that no one is promised tomorrow, our hearts refuse to accept that. We want those years, long, loving, memory-filled moments that others get without a second thought.

I mean, seriously, do you know how lucky you are to live in the world of not thinking about these things?

Add to that that financial strain that medical bills bring, the monthly decisions on who gets what and who doesn't, whether you can get your kids that winter coat or Christmas gift, will you have gas at the end of the month to get to that transplant appointment 4 hours away?

The best part is waking up each morning and thanking the tanked economy for taking the last bit of life out of your husband's business....

It makes you just want to turn off the lights, curl up in the fetal position and cry.

Welcome to our few months.

We've been doing alot of talking lately about our situation, both amongst ourselves and with the kids, and trying to work together as a family towards a long-term, manageable solution.

The kids have been home all week with various illnesses. I cannot tell you how much we have enjoyed having them here, enough though they are sick. After homeschooling for so long, and the move to public school this year, we have been grieving the time we have with them. Especially since we are facing 16 and 15, and they will be gone soon. Off to their own lives. So, here's to that small blessing and the three weeks more of vacation we have with them starting Monday.

On the home front, we are lucky enough to where John and I have gotten good at "if one is up the other one isn't", so at least we both aren't curled up in that fetal thing at the same time. It does help abit.  We have had so many discussions, planning sessions, griping sessions. I've sat in the parking lot of the store while he was grabbing some things we need, and bawled my eyes out. More than once.

The past two years have been a test of faith. We moved to Arizona, prayerfully confident in our choice, only to find that the medical care was not what we needed. And it practically cost me my life. I am confident that because of the care I received, I lost quite a bit of time with my family in the future, unless things turn around. Talk about questioning  your decision making abilities.

The move here has been good. The care is spot on, and I'm having a few more good days than bd now. The last week has been ok. And ok is a step up from where we've been in a long, long time.

That being said, we know I'm losing my residual kidney function in the remaining right kidney and need a transplant while I'm healthy enough. The reality that it may or may not happen is beginning to really settle in. In the past nearly three years, I'v been Pollyanna. No doubts for the most part, just a momentary weakness here and there.

Now, however, it's becoming real. So very, very of you have lovingly offered to be tested as a living donor, and each time I've received an email back or called Denver about testing results it's "No Match" over and over and over again.

Over 20 times right now.

No.

I'm losing hope that this will happen.

There. I've said it.

It's out there.

I'm weak, scared, and guilt ridden that I'm not the "super" believer all the time alot of people think I should be. I get private emails from readers with encouragement and love and uplifting commits.

I need it. I cling to them.

But, sometimes I get resentful. I get ugly inside. I think "I'm  43. This has been going on for over 40 years. For the love of all things out there, it should be OVER by now."

The living donor service people constantly bombard me with emails of a spouse donating to their loved one, a coworker donating or a stranger donating .... it seems so easy for them. Why have I been told no over 20 times. What makes me unworthy? What are my children having to think about important times in their lives I may not be there? Why is my husband wondering how he will possibly be a good single dad?

A test of faith.

It reaches a point where you can't pray. The words you said over and over and over again for months, years, seem hollow and useless. How do I tell my children to believe when they see they fear in my eyes?

I'm working through this. The depression that comes with it. But it's a painful process. And I can't say when I'll be out of it. Or who I will be when it's over.

I hope I'm stronger, better, healthier and healed.

In so many ways.

I'll let you know how it's going.

When I named this blog, I chose the name Living In Grace because it's by God's grace I live.

That right now, is the thing I will continue to cling to. Even when I find it hard to believe.

  

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.

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.

Portland, Redeaux

So.

I'm back and ready to talk more about Portland, I think.

The rant in me seem to have died down some. so maybe now I will be easy to understand. Shall we take a shot at it?

John and I packed up Monday, kissed the kids goodbye and drove three hours to Portland. We arrived at the hotel on time, rather rested and please to see our room was so nice!

John brought all the dialysis equipment up to the room on a Bellman's Cart (and what a load it is, even for two nights) and we got settled in..

Dinner was at one of our (previously) favorite restaurant in Portland - Buster's BBQ. We had looked forward to it from the time we knew we were going to be in Portland! The service was great - the food, not so much ...

Tuesday morning, we had to be across town at OHSU by 8am. That began a full day of testing, running between  buildings and campuses. They do have a great thing there where you can park with the valet for free, all day, and they even brought us a wheelchair. That came in handy due to the sheer size of the OHSU campus. Even though it is situated on top of a hill, thy cram a ton of buildings onto the hilltop:

OHSU Hospital

Physician's Pavilion

Doernbecker's Children's Hospital

The Shriner's Hospital for Children

Dental School

plus various Halls for this, that and the other thing ....

Tuesday we had blood drawn (34 vials, I kid you not), then an EKG, chest x-ray and an abdominal ultrasound.

After that was a 2 hour interview with the Social Worker.

And then? We were down for the day. It was back to the hotel where we called the kids before falling into bed and sleeping for a few hours.

DInner was at another place we had planned on - Panda Buffet. All the lousy CHinese food you can eat for cheap! The food was lousy, the company was great! It did not disapoint.

Wednesday morning found us back up and on the road again and back at OHSU for the mother of all boring classes. Geesh. It was the transplant class, but we had been through the process already, so there wasn't too much new info for us. John had to kick me twice to keep me awake ... oops!

When that was over, we grabbed a yummy luck at the hospital's Cafe, then went to the appointment with the dietitian. Then on the the transplant team appt.

Here is where things went south.

We met with a Visiting Resident MD, Jennifer< for an hour. She quizzed me backwards and forwards on any health issues.

I had been sitting in a wheelchair for two days, in a car for another day so by now the pain levels in my legs had reached optimal proportions.

After we talked with Jennifer, we sat in the room for about 45 minutes while she "conferred" with the team.

At the end of the 45 minutes, another MD walk in, says, 'Your phosphorous is too high. And you need to be able to walk after surgery'. And left.

2 days for 2 minutes.

I. was. furious.

We had no chance to ask questions or anything.

Done. Thank you. See you.

We will send our final recommendation to your DR in a couple of weeks.

So, we got in the car, and came home. I slept all the way home, for the most part.

And now? we wait.

And consider out options. We had originally wanted to work with Legacy Emmanual, and heard great things about them. Then our insurance  changed, and OHSU was the hospital of choice.

Well, we lose that insurance come December 31, so I'm wondering if going back to Legacy is an option.

We will talk to the Dr. next week about everything and get his recommendation.

And that, as they say, is the rest of the story, folks.

Stay tuned for more updates next week!