Living In Grace

Transplant Updates

Several have asked that I re-post this from January 2008.
As you can tell, things move slowly in the transplant World for most of us.

UPDATE- June 2009: We are still in process with OHSU here in Portland, OR to get listed for a transplant. We should have all of the required pre-testing done this month and then be scheduling a pre-tranplasnt candidate evalaution appt in July.

That is the hope.

But, as we go through this process (it's been 3 years now( we find it to be slow moving and unpredictable.

If you dould be praying for speed through this process, I would appreciate it.

 For current and exciting updates on the latest,
please visit www.living-in-grace.net

Thank you to Karla at Looking Towards Heaven for this sweet button.

If you would like to post this button on your blog, click here for the code and Thank You.

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Thank you for coming by. If this is your first time,

and you would like to read more about our story, you can use the links below:

My Story : Part 1

My Story : Part 2

For other posts, feel free to click through the archives, located in the right sidebar.

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A few months ago, I was placed on hold with UNOS for a kidney transplant. Alot of it had to do with this hospitalization. There were some other issues that needed to be addressed as well, and things seem to be coming back together now.

After talking to my coordinator today, I anticipate being "active" on list again within the coming month. This means they will begin to contact living donor candidates one by one and begin the testing process. This is a crucial step for me since we know that I will be a hard match.

To refresh the situation, as a transplant candidate I am required to submit a PRA blood test every two weeks. It basically measures the level of antibodies / antigens in my blood at that moment in time. This will determine what organ would best "fit" me with the lowest chance of rejection.

Since my PRA levels have been so high to this point, I stand a greater chance of rejecting 90% of the organs that may become available through the general population.

So, it becomes a numbers game. The more available organs I can be exposed to for consideration, the higher the chance I have of finding one that will work. Right now, they are estimating my wait to be 6-10 years.

The best match would come from a family member. John's blood type is different, and the kids are not 18 (the minimum age required to donate). This is one drawback to being an only child.

I'm going to step completely outside my comfort zone here.

Since this started, I've been uncomfortable with asking the question of anyone, but as this disease progresses I am beginning to understand that my current treatment is not an effective long term solution. At times and in the back of my hear, I've just assumed this would all work itself through.

Would you consider being a living donor?

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Here are some FAQ's on the process:

Who can be a kidney donor?
While it is not necessary for living donors to be related to the recipient, they are usually friends or relatives. The decision to donate an organ is important and must be made by the person and his or her loved ones. You should not, under any circumstances, feel pressured to donate an organ. Our experienced transplant team stands ready to advise and assist you in this process.

General requirements of living kidney donors are:

• age 18 to 70 years
• good general health
• normal kidney function and anatomy, as determined in the evaluation process

Conditions that would exclude a person as a living kidney donor:

• diabetes
• certain forms of cancer
• intravenous drug use
• certain infectious diseases, such as AIDS or hepatitis

How do you donate a kidney?
When you agree to donate a kidney, you need to be evaluated at Mayo Clinic's Dialysis and Transplant Center. You will first have a brief telephone interview. Based on this information, a kit for blood sampling may be mailed to you. You then take this kit to your local medical lab or hospital and have a blood sample drawn. Instructions for mailing the samples to Mayo Clinic are included in the kit.

 

If these results prove suitable, you will need to have a medical evaluation to make certain that the donation will not cause you harm. Much of this can be performed by your own health-care providers.

 

At a suitable time the donor must travel to Rochester to meet with a Mayo Clinic nephrologist (kidney specialist) and surgeon and complete the assessment. These Mayo physicians will discuss all aspects of the testing and donation with you.

 

If at any time a test result shows that you do not meet the criteria for donation, the evaluation is stopped. One of every five potential donors is found not to be suitable for donation.

 

What risks are associated with kidney donation?
Although some risks are associated with any major operation, donating one kidney does not pose a major risk to a healthy donor. Studies show that the remaining kidney will continue function normally and will compensate for the loss of the other kidney.

 

Kidney donation should not restrict or interfere with your lifestyle after full recovery from the surgery. There is no routine need for any special diet or medication after donation.

 

When is the transplant scheduled?
When a suitable donor is identified, the transplant is scheduled at a convenient time for both donor and recipient. Every attempt is made to identify a time convenient for both parties. This is usually four to eight weeks after the completion of the evaluation. Donor and recipient both return to Rochester a few days before the transplant.

 

How is the donation surgery performed?>
The term "nephrectomy" refers to the surgical removal of a kidney. Two types of surgery can be used to accomplish this:

 

•   Laparoscopic Donor Nephrectomy
  This operation is performed by using a "scope" to peer into the abdomen through a small incision. This approach makes it possible to locate, secure, and remove the kidney through a surprisingly small wound. This "minimally invasive" surgery allows for a faster recovery than with the traditional operation. Donors are generally able to leave the hospital one or two days after the surgery and can often resume work within two to three weeks.
• Traditional Donor Nephrectomy
  This operation is performed using an incision across the flank on one side of the back. The kidney is secured and removed under direct vision. Most donors need to stay in the hospital for four to five days and can usually resume work in three to six weeks, depending on the type of work they do. This method is widely used in other transplant centers, but is rarely required at Mayo Clinic.

Will I need any follow-up evaluations?
Six to nine months following your surgery you will need to have blood and urine tests and be evaluated by a nephrologist. The kidney transplant coordinator will schedule these follow-up tests, which do not require a stay in the hospital. The results will give a good indication of the function of your remaining kidney.

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I am currently listed with Denver Porter Adventist Hospital, in Denver CO.

The first requirement is that you have a blood type of either A or O.  If you don't know your blood type, no worries. They will test you if accepted for consideration.

*To answer the questions below, I have been told "any A or O" will be considered. Thanks for asking to clarify :)!

Please know that all costs associated with the entire transplant experience (with the exception of costs related for travel to/from the hospital for surgery) are completely covered 100% by my insurance.  We are working on ways to offer payment for travel related costs to the final approved donor. 

The process can be done anonymously (to me) if you chooses, simply by contacting Porter Transplant at 1-888-872-8891. Ask for the Living Donor coordinator and tell them you are interested in consideration for Kelli Bach. She will ask some health related questions from the list above, and if you are ok, they will mail some paperwork to fill out. A simple questionnaire.

From there, they will take all candidates and put them in order of potential match. Testing would be done locally to you and mailed back to the transplant center. No travel to the center is required (that we have been told about) until the actual surgery.

I know this is a huge request. I don't expect a huge response.

Also, another request - would you consider a link back to this post on your site? There may be someone out there beyond our scope that would be interested. Maybe not for me, but another person needing an organ transplant. We never know.

Either way, if God lays it on your heart to  participate in this in whatever way, then all glory to Him.

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Hospital Food, Fractures and Stiches ... what a week

Well.

First off, I'd like to say I'm hopped up on painkillers. Lots of them. And I decided now would be a great time to catch you all up on the week past.

Isn't it the best time, when you"re out of your cotton-pickin' mind with drugs?

Yeah, I thought so, too.

So, here we go!

I spent Memorial Day weekend in the hospital, where we tried to get my dialysis prescription right. It ended up to where I am now dialyzing 24 hours a day - 12 on the cycler at night, then I'm "wet" all day. This means I will do more exchanges of dialysis fluid throughout the day.

It seems to be working, although we ran a new PET test (don't ask me hat it stands for) to determine how often  have to do an exchange. I look at it as anything to keep me off hemo is a good thing.

It's alot of rearranging of things around here, but we are managing.

Kati started a new business, creating custom clothing. Her "signature" is this beautiful ribbon weave that she incorporates into each piece. Her dream is design school, and this is letting her get her feet wet. She conceived of this idea months ago, and spent alot of time looking to see if there was anything else out there like it, and there wasn't.

She is starting out on Etsy, with information on several social Media sites. She is also starting a blog, and is really excited about everything.

Wince her "thing" is design, and not numbers, I've been hired as Chief Marketing Officer and CFO of the Evelyn Baxter Design company. Isn't that a great name?  She has done everything to protect that name, and plans to carry it forward as her career progresses.

You can view her work at Evelyn Baxter Designs. (Please note the llink PMS issuesare resolved and should be working now)

To her credit, she made her first sale on her first day for well over $200.00. It blew her away, and made us extremely proud to see her accomplish her dream!

She would like to do a giveaway contest for one of her pieces, so keep an eye out for more details!

To wrap up our week, I went to go let the dog out this morning. She darted in front of me and I fell. Not to get too graphic, but I created a lateral break (from left to right) across the base of the nail bed of my big toe. It broke so severely that is cut through the skin, about severing the top of my toe off.

Wow.

So they removed the nail (after several beautifully strong doses of Lidocaine, hello I love you), put in 8 stitches and put the nail back on. Weird, but they said it promotes healing.

We were actually in and out of the ER in 2 hours flat. With really great care.

Other than that, things have been really boring around here.

What's up and new and exciting in your lives?

Hope

I'm formulating a post to tell you all about these past few days, but it's still brewing in my head, and my heart.

However, an old friend (reconnected through the miracle that is Facebook) sent me this a few days ago. And it really it me in some deep places.

I thought that someone else might need to hear these words as well.

Thank you, Lisa. Truly.

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Friend to Friend
A few years ago, the epic drama, Gone with the Wind, was re-released in theaters all across America. This digitally enhanced, chromatically improved icon took us back to a time in history when American was experiencing a paradigm shift. My husband and I thought it would be important for our teenage son to have the Gone with the Wind experience on the big screen so we purchased three tickets and then settled in for what we knew would be a long evening.

After about two hours, we got to the scene where a sullied Miss Scarlet, deserted by Rhett, stood on a hilltop with Atlanta burning the background, collapsed to the ground, and slowly pulled herself into an upright position. With fist held high, she declared that she would make it through this trial and "As God is my witness," she proclaimed, "I will never be hungry again!" Then the curtain fell, and Steven turned to me and said, "That was a strange way to end."

"Oh, but look," I replied. Then he saw the words "intermission" imposed over the curtain.

"You've got to be kidding," Steven said.

"Nope," we're only halfway done."

You know, I've identified with Miss Scarlett on several occasions. Sometimes life just gets so complicated and it seems as if dreams have been snatched away by some foreign rebel force. My previous way of life is up in flames in the background, my man doesn't understand, and my friends have all run for cover. What will I do? Where will I go? Is this the end!

Then as the curtain falls on this scene in my life, I think to myself, this is a strange way to end. But I look again and see God pointing to the screen as if to say, This, my child, is not the end. It is but the intermission. Get up. Take a break. Stretch if you must. But the movie of your life is not over yet.

Looking back in the Bible, many men and women came to a point in their lives where they thought it was the end, only later to discover it was merely an intermission. Elijah hid in a cave thinking his ministry was over. Moses herded sheep in the desert believing his dream to rescue the Hebrews was dashed. Jonah made his bed under the shade of a plant and lay down to die. The prophet Samuel groveled in depression after his charge, King Saul, disobeyed God and lost his reign. Each of these men thought it was the end, but in reality, it was only an intermission. God wasn't finished with the drama of their lives quite yet.

I don't know what you're facing today. Perhaps your life has taken you to an unexpected place. Perhaps, like Moses, you've made a poor decision that resulted in you running from God and from man. Perhaps like Elijah, you've allowed someone's threats to put fear in your heart and you're in hiding. Perhaps like Jonah, you've obeyed God, but feel duped because your obedience didn't bring the results you'd hoped for. Perhaps like Samuel, you're depressed because someone you oversee (a child, for example) didn't turn out like you had hoped. With your dreams burning in the background, perhaps you've stood on the hillside with fist raised in the air making declarations to God.

If you see yourself on the screen, can I encourage you sit down, take a deep breath, stretch, and regroup. The story's not over yet. Perhaps you're just at an intermission.

As someone once said, we shouldn't put a period where God put a comma.

We finally finished the movie. I don't think it ended the way Miss Scarlet would have liked.

But, I'll just think about that tomorrow. ..

Let's Pray

Dear Lord, sometimes I feel like there is no hope, like the story of my life is running amuck on the sandbar of disappointment. Thank you, Lord, that you never see a situation as hopeless: that what you have begun in me will be completed. Lord, when I make a poor decision, help me to repent and go on with life; when I want to go into hiding, help me to have the courage to come back out of the cave of despair and into the light; when I am disappointed, help me to look to You alone.

In Jesus' name,
Amen.

Now It's Your Turn
Have you given up on a particular situation or a particular person?

Could it be that it is time for the intermission to be over, and God is waiting for you to come back on the stage?

Have you put a period where God has put a comma?

If so, what do you need to do about it?

Thank you Baxter Pharmaceuticals Rep. Seriously. Thank you.

Dear H***, my Baxter rep,

I would like to take this opportunity to thank you profusely for not making your flight from (wherever you live, USA) this morning.

Because of this, you were unable to assist the dialysis nurse from figuring out the extremely labor-intensive software program that would have allowed her to read the data on my computer chip. But, because y'all rate your software up there with giving over the nuclear launch codes, or something close enough in your estimation, she has been unable to launch the softwae remotely.

But, the world is safe for the moment it appears.
.
Anyway.

Long story short, while you are enjoying your extended weekend and celebrating Memorial Day in whatever fashion you choose, I will be lounging around in-patient at the local hospital for a few.

Days, that is.

Not spending time at home.

Not celebrating.

Not having a lot of fun.

Oh, the kicker?

My daughter is also out of town, so that leaves the men at home, alone, to fend for themselves.

Do you sense now why I'm so angry?

Well, again, I do sincerely hope your weekend is all that your "missed flight" was intended to make it.

Oh, and 'longer' was the word I was searching for. Just in case you were not following me.

Too much Memorial Day fun can do that to a person.

Yours truly,

blah blah blah

Yeah! Another visit to the hospital ... I'm a lucky girl :)

So.

We have a plan ... but first, I will outline yesterday and all it's gory details.

My liver biopsy was scheduled for yesterday, and we needed to be there at 12:30 to check-in. For some reason, it was a test that required anesthetic, so my afternoon was pretty much shot.

On the way there, I happened to call the clinic to ask a question, and was given my lab results from the week prior. These were the tests to show how well I was doing back on  home dialysis (PD), and to confirm our decision to pull the hemo cath out of my shoulder had been a good one.

Yeah.

That went well.

My BUN was 170 (as compared to optimal below 50) and my creatinine was 13.7  (good? 7.0 or so) ... so basically, I'm back to my body being in a state of toxemia again.

At that point, we canceled the biopsy and waited for the doctor to call.

I don't know if I have told you just how much I love my doctor. He has a biting sense of humor, and we get on well together. He is direct, to the point and pulls no punches withme. And I love it.

When we finally called (and int erupted our "improve mommy's mood with a BBQ"), he asked how I was feeling. My response was, "Great, until I got labs this morning".

To which he responded, "Yeah, they looked like !&#(*&@".

My thoughts..
Exactly.

After a lot of discussion, part of which revolved around me insisting that the computer chip in my dialysis machine would bear out that I was in fact doing exactly what I was supposed to do.

Once *that* was resolved ....

We put a plan together.

Wednesday: New labs will be drawn.

Thursday: We will review labs. (I am confident things will be the same.)

Friday:  I will go into the hospital for a few days so they can mimic my dialysis to ensure things are being done correctly.

Next week: (Most likely)  We will run another PET test to determine if major changes need to be made to my dialysis prescription.

So that is the plan.

I will be live blogging from the hospital -

I know. You're excited.

Thank you all for your encouragement yesterday. I'm still fighting the depression that it threatenting to settle over me, but I'm wokring at keeping a smile.

I Had Such High Hopes ...

In so many ways, today has been discouraging.

I had high hopes of finally settling down and writing a huge series of posts to catch you all up on things 'round here. So much has been going on, it left me so little time to write.

I had high hopes that when I talked to dialysis today, and got my first labs back since getting off hemodialysis, they would be stellar. In anticipation of that, my doctor had (vigorously) pulled and prodded the permcath our of my shoulder Thursday.

And I took a shower.

Without an hour of prep to cover it to prevent infection. It was glorious.

But, labs aren't stellar. They are as bad, and some worse, than before we started hemo in January. Temporarily. It was supposed to put things in line and then home dialysis would take it from there. And it failed.

To my credit, I did everything I should have. And have a computer chip from the home machine to prove it. Thank God. Those of you that have been around long enough know that in November or so, the dialysis team accused me of not doing my thing. But it was "he said, she said". Now, it;s irrefutable.

Regardless, it's not working. And I cannot tell you how my world has fallen apart. The thought of long term hemo scares and depresses me. I get too emotionally attached to people, and I'm the aby of the group. And watching these people die, since they are not going to be transplanted, just kills me.

And selfishly, I want my life to be my own. Not scheduled around 5 hours in the chair somewhere else.

We are looking at options, including a PET test to ensure that it's me that's the problem (my peritoneum may ave just shut off), or we may not be dialylzing long enough or something. I on't know.

But if we have to go back to hemo, we have a lot t deal with.

Emotionally, I need to be able to accept it. Going on a temp basis for 90 days was hard enough. Facing a permanent move .... well.

Financially, this means a few things. Six trips from Sunriver to Bend, about 40-60 minutes each way, for John. All with summer gas prices on the rise here. Honestly, we barely held our heads above water for the those 90 days. I know John is stressing about this.As am I.

Also, it will mean we need to put our plan to move back to town on the forefront. Technically, we have to stay here until August 1- but if need be, we may need to negotiate something sooner.

The kids are quiet about it all. I think they are just trying to roll with everything going on around here.

More to follow once my head gets in a better place.

There really was a ton of exciting things happening around here lately.

Update .. In 100 words or less (sigh)

Hola peeps!

I'm here. I'm alive.

I'm simply blog-challenged right now.

It seems my brain is in shut down mode as it pertains to putting anything in order or explanation.

I think I need a transplant, or more than one variety.

Hmmm .. a brain/kidney transplant.

Could be?

Anyway ...

I went in to get my new catheter checked, to prep me to start home dialysis again tomorrow- and made the comment about how I was "so totally over the hemo thing".

(Hint. Hint. Don't make me go to the last 5 hour hemodialysis session. Please.)

(I will love you forever)

Three phone calls and some adjusting later?

I was out the door after only being on for 90 minutes.

Woot!

Coming up??

Pictures from Jonathan's 15th birthday Sunday, and my respionse to taking TWO kids to the DMV for their driving permits on Monday.

Thank goodness insurance won't go up until they have licences.

(I'm sure we can push that off for awhile).

So- please. Tell me what[s going on in your lives.

I've missed you more than anything.

Here's the skinny more to follow

Surgery took three times longer than expected, and he had to go higher (above the waist) because of scar tissue from the tunneling of the last two caths. But It's over, and morphine is my friend. (Now, off to use spell check. Brain and hands? Not so happy with each other).

Oh yeah.

Dr. Wilkinson, of the knocked me out variety?

Love. You.

Please Keep Your Arms and Feet Inside the Train Until It Comes To a Full and Complete Stop.

There seem to be no words to describe the roller coaster we have been on this week. How 48 hours can throw you around so much, so intensely, up and down and all around.

I think John and I could each tell a much different story of the emotions and thoughts that we railed around in this week.

But, I will try to explain.

(Deep breath)

Dialysis Thursday started out like any other treatment time. Hop in the chair, get hooked up, and figure out how to kill 4 hours of your life without going brain dead from too much TV. Or maybe it's all those commercial.s Since getting DVR a few years back, our house has been a commercial-free zone.

But I digress.

The nurse in charge of the unit brought over my most recent blood results. She stated that my kidney has all but given up, only processing fluids but not the toxins, so hemo is the only option, and needs to be a "permanent" option.

This means getting a fistula, and coming to terms with the fact that this is now my life. Going to the clinic three days a week for an extended time of four and a half hours.

Add to that the 2 hours of round trip driving from the house, and let's just say the three days of my week are shot to, well, you know.

The biggest issue is that the more I questioned the results, the more she seemed to:

a) get defensive that I was even asking anything and

b) Make up what seemed to be odd answers to justify her statements regarding the results I was questioning.

I called John from the clinic to have him get us an "ASAP" appointment with my doctor, and unfortunately only had a few minutes to talk to him so he was left with a pretty nice sense of panic. With no way to talk to me again for 4 hours when he picked me up.

However? He was able to get the appointment for the next morning. He. rocks.

We spent alot of time talking on the way home Thursday, about all the options and my concern about the results. Our end game was "When (Dr.) Feldman tells us to panic, we'll panic. Until then, NO panicking."

We talked to the kids a little about things that night, and reiterated we wouldn't know the full extent until the next morning.

And then? We watched several episode of Gilmore Girls and West Wing on the DVR.

In another life, I would be Lorelai. 

But that is a whole 'nother post.

Friday found John and I driving over to see Dr. Feldman. Neither of us had slept much the night before, but we trundled on.

Feldman came in and happy and cherry, so that we good.

Then, he dropped the bomb.

"How would you like to go back on PD?"

At home.

At night.

Back to dialysis while I sleep.

You could have heard a pin drop in that room when he said that.

Then came the jumping and yelling and chest bumping.

Ok, so there was no chest bumping, but you get the picture.

We. were. ecstatic.

Three weeks ago, I had my abdominal PD Catheter removed from my stomach because of infection. At the time, we discussed it would be at least six weeks before we could talk about getting a new one inserted surgically.

And now, after only three weeks (not to mention the hell the nurse had put us through the day before) he was talking about getting me off hemo. Permanently.

Can I get a Hallelujah, and an Amen!

So, here's the current plan.

We meet with the surgeon on Thursday. we're hoping he has an opening to do surgery on Friday.

Then we wait two weeks before we can start using the catheter again.

Hopefully, hopefully, in three weeks maximum I Will be back at home full time, doing dialysis at night while I sleep, and th catheter in my left shoulder will be removed by Feldman in the office.

(I do believe i became abit pale when he said "Sure, I remove it here in the office. Just put my foot in your armpit and give it a good yank!". But you know? At this point, he can do that while whistling Dixie and I won't care. As long as the only time I go to the Hemo unit is to say Hello.)

In transplant news, we are still working with OHSU. They are way too specific about needing so many, many tests before I can even go in for evaluation. More than Mayo, Denver or Legacy asked for. It's honestly getting redundant and frustrating (we've been in process with them for three months now and still no face to face visit).

Now, I need to see a Hepatologist about the fact my liver is slightly enlarged. Sigh.

Feldman ordered a gallon of blood worth of tests I will have done Tuesday, which I will get the results of when I see the Hepotoloist later in April. So, long story short, We are looking at May at the earliest for the face to face (where we will have to stay two days for even more tests, ugh) and being listed and ready to start testing living donors in June.

Again, these are "best case scenario" dates. The way they are spinning s around, who really knows.

But, at least I'm going back on PD and coming home.

For the moment, that will be my rainbow.

Update

Some good.

Some bad.

We're pooped, so more tomorrow.

Thanks to everyone!

(Oh, and more good news here, for those of you following Todd's recovery from a shock of 13,200 volts to the top of his head)