Living In Grace

Put one foot in front of the other .....

I met the Physiatrist today. We had a really loooong talk about the last few months, as well as my goals are as far as wanting (really really badly - pardon my grammar) to be up and walking, and driving, again. She seems to have the personality of a piece of unbuttered toast, or say, a tree stump, but man oh man is she aggressive about her therapeutic regimes!

She is adding 3-4x wk of physical therapy to the 3x wk of pool therapy I already have. This will include the physical therapy group, the hospital's rehab center and some rented equipment from the medical supply place in town. Basically, I will have (including home time) 112 physical therapy sessions (home and away) per week.

She is adding in dynamic knee braces on both legs that will click and lock in straighter angles over time to slowly straighten my legs, and about a dozen or hundred other things besides.

Very aggressive, alot of work, but I am excited ...to get out of this wheel chair in the next few months!

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On the transplant front, we had another candidate fall out of process today, so I have sent an email to the next person on the list to see if they are still interested.

The second candidate (who we were originally told had to wait until June to proceed) has been released to have blood drawn for cross-mating completed.

(To see the guidelines of Who Can be a Living Kidney Donor, click here)

We were also hit with another OHSU curve ball- after being told that all medical testing related to transplant is covered by our insurance, we found out that once someone passes cross-match they will need to have certain routine health screenings performed (For example, a woman's annual GYN testing).

Since these are considered "Routine" and should be done annually (or so), our insurance does not over these. So we will need to (and will be happy to) pay for these tests- either the co-pay for someone insured or the cash price for someone with no insurance.

Fortunately, we found ut now so we can add those amounts into our fund raising / personal savings account calculations, since these can be quite expensive for an uninsured donor. One of the required tests, a colonascopy, was one that John had just a few months ago and the bill we received (before insurance was billed) was for over $4,000.00. 

We continue to believe that if we are to find the right donor, that God will be faithful and provide the finances to the penny of what our needs are.

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 Jonathan is doing well in track. He had his first meet the Friday before Easter and placed 2nd in the 4x100 relay, 4 in the 100 Meter and 200 Meter relay. He is sitting out the meet today due to a shin splint / possible stress fracture. He will be rooting his team on from the sidelines and providing lots of moral support. Go Lava Bears!!

 That is about all from the House of Never a Dull Moment :)

What is going on in your house? Are ready for Easter?

(To request a copy of the flier called "Would You Be a Hero", please leave me a comment below, or emal at "jkbach@comcast.net"

If You Would Be Willing To Help ...

 

We have finally received the flier briefly discussing our need for a kidney, and also one of the fundraising efforts we have in place. This was created at the request of a local church you wanted to print if off and hand it out at their services, and also some retailers that have agreed to put it in the stores for the general public.

If you would like a copy of the flier for use locally in your area, I can email it to you in either a .jpeg or a .pdf file. Please leave me your email address in comments below, or send it to me at "jkbach(at)comcast.net".

You can read more about some additional ways we would appreciate support by clicking here.

Thank you everyone for all your continued support in so many ways. We are forever appreciative.

Kelli

Can you help spread the word?

 

Morning everyone.

We have come down to the last two people person on the list who have offered to be tested as a Living Kidney Donor. Of the two who have been in process with OHSU, one is "on hold" until June for any additional testing and the other was just disqualified at the cross match phase.

An email went out yesterday to the last person on the list to see if they are still interested, and hope to hear back from them in the next few days. If they are, we will begin again with OHSU, if not, we are basically done. 

There is still the option of the Deceased Donor List, but OHSU has me on hold for that right now because I am not walking. However, having been listed for 3 years and not finding a match that way, it doesn't look like a viable option anyway.

(OHSU basically called us Friday with the news that the one candidate was ruled a non-viable match at the cross match phase, and that they had changed their minds, again, about putting me on the active Deceased Donor List until I can walk. the issue with that is we got a call last week from the physical therapy clinic. The lift they use to get patients in and out of the pool broke, and they are not fixing or replacing it. Which means I cannot use them for PT anymore. Which means I have no means of getting back on my feet and walking at this point. There are no other PT clinics in Bend with a lift, so we are trying to figure out our next step. Not a good place to be right now.) 

UPDATE: I just located a PT with the equipment needed to get me in and out of a pool for therapy. Now we need a "Care Plan" to outline for OHSU approx. when I will be able to stand, then take a few steps, then walk with a walker, etc. Hooray!

Back to the donor issues.

I need to try and locate anyone who may be willing to be tested as a potential living kidney donor. A living kidney donor match is still a long shot, but a deceased donor match is even more of a long shot. It's a number game. Period. The larger the pool of candidates, the better the chance of a match.

Desperately.

Would you be willing to help spread the word via your blog or social media (such as Twitter, Facebook, etc)? 

Some helpful links on the process are:

Who Can Be A Donor and How Are They Evaluated

Benefits of Living Kidney Donation

A view from the other side of the picture: Direct from an actual Living kidney donor

Another option we have created is in the form of a brochure/flier that outlines, succinctly, our need. We have had several people offer up some things they are willing to do, such as:

• Placing in a retail environment, in the front window or  stack on the counter for takeaways
• Briefly explaining the need in the "Announcement" time during their church service, and putting the flier in the bulletin or in the lobby
• Hanging on public or church bulletin boards
• One lady is going to include a link in the monthly mailings of her online newsletter

If you can think of any other ideas, please let me know. You can either add it in the Comment section below, or email me jkbach(at)comcast.net.

And if you would like a .pdf copy of the flier, please let me know as well. It should be ready soon.

Lastly, a HUGE SHOUT OUT to David at Hudson Design Group, who has been putting together the flier with a little bit of input on my side. Helpful input like "I would like it to look sassy" or "Feel free to take all of my excessive  verbiage, and make it readable to a normal person. And succinct." (note, succinct is not my strong suit).

Please let me know if you would be willing to help in some way. I would really like to say a personal Thank you to each of you.

Thank you all again for your help, your prayers, your support, your email of encouragement, your email of really, really bad jokes (you know who you are), and your offers to fly out here and give me a big, huge hug.

Fear.

 
We received a call today during Jonathan's track meet today, that the cross match and genetic testing results were back from "J". Her blood was a great match with two of six markers, but the rejection test (I should understand this better, but I don't) needed to be under 32, and mine responded with over 160.

So, she is a no go without question. The doctor's would not even consider her.

(Please be praying for her. She was called first, and had to give permission for OHSU to call me with the results. I have not communicated with her yet, but would think she would be pretty upset by the news. I would be.)

So now, I have to contact the next person on the list I have who has indicated an interest in being a donor.  I move down the list until someone indicates they are ready to start the pre-testing process of qualification. Then, we begin all over again.

Adding to the fun, she transferred me to my pre-transplant coordinator who told me that the doctors are reluctant to put me on the deceased donor list that I have been on with Denver since 3/07 due to my lack of mobility.

I don't understand why I am ok to test for living, but not able to be listed for deceased. The answer I got confused me, but honestly my brain is beyond comprehending all of this right now.

We are supposed to hear back next week about whether we have to go to Portland and let the doctors see me in a wheelchair. Another thing I do no understand.

Adding even more to the fun, we got a call form the Physical Therapy group I see that the Hoyer lift they use to get patients like me in the pool is broken and not being replaced. We cannot get an answer from them as to "why", we just hear "because". There is no other pool therapy in Bend with a Hoyer lift.

In the midst of all this, we are trying to figure out how I will get pool therapy so I can start walking again so I stand a chance at transplant.

I don't know.

Today has overwhelmed John and I like a tidal wave, and left us both wondering the inevitable "why", and 'how", and" if".

After 4 years, it is the "if" that scares me the most.

Parker needs prayer right. now. Please.

Parker needs God's touch in a big way, as does his mamma.

Hi. Remember Me? Yeah... sorry.

What a day, today!

First thing this morning, I had to get the cleaning required for transplant. I came home with half my mouth totally numbed out. Ugh.

Then, KTVZ Channel 21 called and wanted to come over to do a segment for the 5 & 6 o'clock news tonight They are planning on following us on our journey until after transplant. So, hopefully I didn't look odd talking with half my face with no feeling.

After that, the Bend Bulletin came over and interviewed me for a story they want to do on our story and living kidney donation. Over the next few weeks they will go to dialysis and physical therapy with me, as well as talk with Dr. Feldman and the family. She really wants to do an in depth story which we are highly appreciative of.

Seems I am turning into “The Face of Kidney Failure and The Need for Organ Donors” in the Central Oregon area. What an honor to be able to help raise awareness in our community!

On the donation front, J recv'd her blood kit yesterday, and will getting her labs drawn this week sometime. Those will be sent back to OHSU for genetic testing and cross match. If her blood does not contain the proteins that I have antibodies for, then we can move forward with the rest of the testing towards transplant.

Please be praying that her blood will like my blood :)

Thanks everyone, for all your encouragement and support. It mean the world to us.