Living In Grace

What I'd Like You to Know: Living w/Chronic Illness

This is an old post, a guest post that I wrote for a sweet friend Shannon from Rocks in my Dryer for her series  entitles "What I'd Like You to Know". This entire series covers everything from bing a Single Adult, an American Mom Living Overseas to Living with Alzheimer's in the Family. I encourage everyone to go over and read these articles in her archives.

The link to them all is here. at the bottom of the page, you can finish the series by clicking "More Posts". 

I hope this answers questions, encourage you if you or someone you know is living with Chroinc Illness. If you would like to contact me privately, simply send an email to jkbach(at)comcst.net. We are all in this thing together....

What I'd Like You to Know: Living with Chronic Illness

 

Because We're Worth It! (especially when there is a GIVEAWAY involved!)

 

Tomorrow I embark on an adventure, a Hair Odyssey of sorts. 

About 2.5 years ago, I started hemodialysis for 3 months and lost the majorit of my hair in that time. No bald spots, just handfuls and handfuls evenly in the shower or during brushing.

Many of you may remember how utterly devastated I was.

"I may be sick, but I will always have my hair!" had been my mantra from the beginning of Stage 4 Kidney failure. Within 90 days, my long, thick beautiful hair was thin, wiry and turning grey. 

For all this time I have been praying it would grow back, refused to cut it at all, or to go short, determined no matter how much my family thought of my craziness. I believed it was coming back.

(Can I get an Amen?)

By now, my hair reached about the middle of my back and has not been colored in a year. (Yikes!) The salt and pepper has tried to take over, but some of the auburn has clung around. 

I have tried everything on the market to bring it to health.

Even talk to it, like a plant.

Last night while John was on his way back from the other side of the mtns, I had about 7hours to myself Never a good thing. That tens to be when Mr. Impulsive comes to play? Anyone else know that feeling?

Well, I watched some youtube videos on Self Haircusts on Long Hair (I mean, who doesn't turn to youtube in moments like this, anyway), put my hair in two ponytails, and cut off about 3" on each side. Granted, it was supposed to be about 2", but one side was alittle shorter, then vice versa and ... well, you get the picture. We ended up at about 3-4" when all was said and done.

But, it was all the dead, frizzy stuff. And, it looks thicker, healthier.

Really.

Tomorrow I am starting on a regime of Wen Hair Care products.  I have researched hair products. To. death. And so tomorrow we begin.

It feels like about 80% or so of my original thickness now. Not 100%, but considering I was at about 20%? I will gladly take 80%. 

Now. I want healthy.

And I. have. haircolor. I am chomping at the bit to use it, let me tell you!

As my sweet friend Sophie would say, "My hair needs some spiritual healing! A ComeToJesusMoment!" And ladies, we all know that invoves L'oreal. The good stuff, right?

So, Wen for a week. Lots of conditioning.

And then.

♫' I'm gonna wash that (grey) right outta my hair" ♫

More to follow.

Hallelujah! Amen.

_______________________________________________________________________

The Fun Part! 

So, help a Sister out, Ladies! What is your hair nightmare story? Any bad moments with cut (like bangs?), or color (think SunIn)...

Do share.  ☺

The best story wins some super swesome, not found in stors Wen ReMoist HepCatDaddy-O conditioner.

Extra entries for Tweeting, FB'ing, Yodeling- just let me know in a separate comment each way you shared this post! 

No duplicate entries, please\

____________________________________________________________________________

(This is an unpaid, unsolicited mention of the Wen Hair Care and L'oreal haircare products. Just me yammerin' on. As usual).

 

Not the Update I Wanted. But Life is Not Perfect, Is It?

Two things of significance today:

1) John thinks my dialysis access in my arm is infected, so no dialysis today. Have to go have it checked

tomorrow. If "yes", it means 3 weeks of dialyzing "In Center"- where it is understaffed and every

treatment feels like taking a risk with your life. I cannot communicate the Sheer Terror this pus in me.

PLEASE pray that John is wrong. (I cannot see any signs of infection, but we cannot risk it).

2) I had to tell Cedars that I am in no place psychologically to be "active" on the Transplant List. Y'al

l know I have been fighting with myself for awhile on this, but it came time to tell them. I was dead

honest, and was told that the Dr feels he is "uncomfortable with me as a patient right now" and that I

am now Status 7 (On Hold Nationally).

I took a huge risk telling them what I did, but felt I had to. I was being told about the "400 patients that

want a place in the 6 clinic appts we have available for the next month", and in good faith could not

take up another one from someone ready to go.

Most likely, we will be moving to a Paired Exchange unit anyway, but my fear that the notes of this

conversation and the things said will be put in my 'permanent file' terrifies me. 

How will another unit look at me after seeing my Cedars file? Will another unit take me when I am

ready? The questions are weighing heavily right now.

I could sure use some prayer and support. I am really conflicted right now.

Well, that is the latest.

Kelli

PS: Most updates are now handled through a Facebook page called "Operation Find a Kidney for Kelli". Feel free to request membership in the group. All are welcome. 

6 years. Wow.

 

Just realized the date.

 

6 years ago, today, was my very first dialysis treatment and the beginning of this whole mess, journey,.

 

I was still working from home, helping the new clients of our company establish their phone support from soup to nuts.

 

At the time, no one outside my home had a clue as to what was going on with us. Meetings were held on the phone, and there I was hooked up to the dialysis equipment. 

 

What a busy time it was. 

 

I held that up for about 6 months before it all came crashing down in November. At that point, it all was just too much and I was forced out onto medical disability.

 

Rock on.

 

The last 5 1/2 years have had highs and lows. I truly believe there are a few things  that have held me together:

 

My family - I have the most amazing husband anyone in my position can ask for. He had done things, seen things, handled things that no human should be asked to do. In the area of "sickness and health" he got the short end of the stick. But, instead of walking out, he stayed and became the rock I depend on. My kids, though young when this all started, had grown and matured into compassionate, empathetic people. They may not always help out with a smile and a song, but they are great kids. 

 

My God.

 

My friends - Y'all have been an amazing and unexpected pillar of strength. Humor, Prodding, Kicks in the Keester when needed most, meals out of the blue, gift cards, financial support. It seems like when there is an unspoken need, someone just comes through with the answer. It continually amazes me and blesses me.

 

Humor. Where would we be without that, eh?

 

Here is 6 years of success. We are all still alive to talk about it. Amen and Praise God.

 

Hopefully, in another 6 years, transplant will be behind us. A sweet memory. And this wheelchair will also be a, well not a "sweet" one, but a memory nonetheless.

 

Thank you.

 

Thank you.

 

Cedar Sinai Potential Donor Update

 

We heard back from Cedars. They have a new Social Worker / Donor Advocate who is willing to talk to Sarah again, and make a recommendation on whether she can donate or not. (Last year, when Sarah was there for final clinical evaluations/interviews, the old SW/DA was the one who turned her down.

So- she will conduct a phone interview with he, and report back to the team. If she likes Sarah, we will have to fly her back to LA for an undated round of testing. I will have to go in again as I haven ot been there in over a year, either. 

If all goes well, we can raise the $$ to get us the three of us there (John has to fly with me since I am in a wheelchair) and they sign off, we may e getting a date.

I would assume this process of interviews et al will take a month or two, what with having to come up with the $$ get flights, hotels, et al., plus clinic dates fill up quickly.

I am tentatively schedule to go May 25 for my annual, so that is the earliest i cn even get there. Hopefully we get Sarah there sooner so maybe we could do surgery this summer if all goes well.

That is where we are at. I never thought this would even be a possibility a year ago. Hoping good things come to those who wait.

Numbers That Weigh Heavily On My Mind

Some numbers that are on my mind this morning:

6 - the number of years this week since I was diagnosed in Stage 4 Kidney Failure. Seems I skipped over Stage 1,2 and 3,

6- the number of years this May that I will have been living only because of dialysis, whether daily, nightly, 3 or 5x a week. It has changed over the years for various reasons, and by various methods.

6 - the number of years I have been listed on the UNOS Transplant list.

1- the number of times I have recvd a call stating I was in line for an available cadaver (deceased person) donor.

2- the number "in line" I was for that one precious available organ.

53- the number of amazing people, mostly strangers but now lifelong friends, who selflessly offered to be tested as potential Living Kidney Donors.

52- the number of those whose antibodies got their rear-ends kicked by my antibodies. Instead of everyone playing happily in the sandbox together.

1- the number of those 52 that made it all the way to Cedars for final approval. An angel by the name of Sarah .

1- the number of team members, out of almost a dozen that Sarah saw at Cedars including the actual Transplant Nurses and Surgeon, who denied her the chance to be a Living Kidney Donor as she so desperately wanted to be.

361- the number of days since our collective, countless hearts were broken by that one team member who said, "no".

1- the anniversary that we could have been celebrating just a few short weeks from now.

2- the number of times I have undergone specific treatments to teach my antibodies to play well with others, in the hopes of not having another potential Living Kidney Donor turned down.

47- the number of years that God has allowed me the gift of walking (or rolling around on) this earth as of tomorrow.

48- the number to focus on now.

1- the number of Living Kidney Donors it will take to save my life.

A Living Kidney Donor. What a wonderful birthday present.

Because ...

This Christmas season, I am so wrapped up in the "make it the best, it could your last" that I have completely gotten away from this:

 

The whole reason we should be celebrating.

I need to slow down, take a breath and remember that- if this is my last, then it has been written in ages since before time, and I cannot do anything about it.

So, how can I make this the best Chrsitmas for my kids this year? By helping them remember the Why. The Who.

But first, I must remember it myself.

A baby changes everything. Hallelujah.

 

Merry Christmas to you. And I hope to be abit moe regulr in my postings after the New Year. I miss y'all.

 

An Update on My Life, My Kidney Transplant, Dialyis and More. Seriosly. I know. I stink at this.

 Hello, 2 people who still come here. My bad. All me :(

Thinking, composing, committing is just getting to be a struggle. Whine, whine, whine. Sorry... Depression is, as well. But, I am trying.

We have some options here at the house that may help relieve some tension, stress, burdens, etc, so as we know- I will promise now to do my best to let you know.

The fam:

Kati decided to be a "Super Senior", taking an extra year to graduate and get in some extra work on her GPA in case college is a next step. Her prime focus is on being a dance instructor, Ballroom is her passion, so college may not be the best option in her long-term plan. And I have actually come to be the cheerleader for that option- the No-College one. Me. I never, ever thought those words would come out of my mouth. So. She home schools 2 days a week, works 6-7 days at one FT, one PT job to pay for all. those. dance. classes. I am proud of her, though rarely see her. Tonight she flopped on the floor while John was picking Jonathan is up Jazz Band practice, and we watched the opening episode of Charlie's Angels on DVR. Cheesy as it was then, and I am proud to say I was glued to the screen every time it was on as a child. The new one? The jury is out.

Jonathan: Is passionate beyond words about his music. He is in, ahem- IB Musc, sings in the HS Chorale, plays piano for The Dynamics (the HS Jazz Ensemble), plays piano for the HS Jazz Band (pretty good group I must say), plays piano for some paying gigs in town (Coffee shops, Bookstores kindof thing, a Festival now and again) with his Jazz Quartet "The New Side", and plays piano in the Jazz Band at t he Cascade School of Music. And practices 2-3 hours a night when he get home. Every night.

Yeah- we are currently talking about pacing and burnout.

Otherwise he, too, is a Senior though opting for the Super Senior program and will take 2 classes at the HS next year, and the rest at the community college. He wants to get his General Ed out of the way there since it is all free him being a Senior still and all. Thank you, Lord.

And we rarely see him either. Except at the piano when he get home at 10 or so. Oh- he ballroom dances with his sister as well....

John and I get through each day.That is all ...

Oh yeah-

We are training next week for 4 weeks to do hemodialysis in home starting November 1. I do not have to go to the center three times a week. Thank goodness. But, it will be alot more on John as he has to be here the whole time I am dialyzing, which will be a total of about 36 hrs/wk over 5 days  roughly. Not sitting with me, but within calling in case of emergencies, which do happen but rarely.

And now? The update on transplant.

I talked to my coordinator at Cedar Sinai. Seems that since 2009, when 2600 fewer kidney transplants nationwide were done, there has been a continuing decrease in the number of cadaver kidney-provided transplant done in the US. In the last 4 months, the decrease has escalated.

This proves even more the need for Living Donor kidney provided transplant donors. A person can live a long, full life with... just one kidney.

A person in kidney failure cannot live life without the miracle of a transplant. Statistically, the longer you are on dialysis, the *less* your chance of survival is. The avg. decline in life-span is -25% per year That means in 4 years you are living on more than borrowed time. You need that transplant.

I beg you to consider being that miracle. Consider being a kidney donor while you are here to greet the person whose life you saved when they wake up. Celebrate those anniversaries with them. 1 month, 3 months, 1 year, 5 years.

Let their family shake your hug, hug you, tell you what you have done for their family unit. They need every single. person.

If not, consider being an organ donor when you are gone. Give the gift of life. In a day and age where less and less people are willing to do so, for whatever reason, be that one person that does want to make a difference.

Please, I am begging you. Because I pray you are never on the other side of the equation, waiting for the phone to ring. Wondering of you will see that next birthday, Christmas, Thanksgiving, anniversary, graduation, wedding, grandchild.

(feel free to share, re-post, talk about as you wish)

Thanks. Thanks so much.

So. I know I say I will try to write more, but I do mean it. And I will.

Thank you for your ongoing encouragement.

 

Hugs,

Kelli

Hello Out There, World. Remember Me?

Hey everyone. How are my peeps?

Frankly, I am not sure if I still have any peeps out there. I have been horrid since last July about posting, and I truly apologize.

I am finding that, as time goes by and I live in this world called Kidney Failure, that it is not just my physical body breaking down around me. Yes, I am still in a wheelchair, no walking does not seems any closer.

But, I am starting to find my brain is breaking down around me, as well. It is apparent that it is harder and harder to put thoughts not only together in a conversation, but on paper. I cannot tell you how many times I have opened Typepad to write all about the things happening here, but health-related or not, only to sit  and look at this blank screen in front of me.

To be honest, it seems a two-fold issue. Around here, I find I cannot have more than one thing going on noise-wise and still be able to concentrate enough to carry on any type of conversation. But, I also, at time, feel I've nothing left to say.

Nothing that has not been said again and again ad naseum in the last 5 years. It is almost that it is not just becoming too much to be living in the moment and seeing it happen, but to document it? I believe that is part of my struggle.

I wonder more and more if I will have that moment where I can look back and laugh at all this someday, as they say.

Cedars is the best hospital around. They are the hospital to heal me, I truly believe. But we are once again in the cycle of each new Living Kidney Donor candidate, which to be honest are becoming harder and harder to find, being turned down. I thought when we signed up with them that this was it. The miracle we were hoping for.

Miracle, stage left.

Elvis has left the building.

So, I am sorry for not being more vigilant about posting. There truly are wonderful moments in this house. I have a beautiful husband who takes amazing care of me and two of the most wonderful kids who are becoming more and more stitched to my soul every day.

Jonathan is thinking of spending part of his Gap Year in Africa- either on a reserve as a volunteer, or building on an orphanage compound.

Kati is killing herself this summer working 7 days a week at two jobs (1 FT, 1 PT) and taking dance lessons and going to Social Dances to hone her craft- all in preparation for her upcoming Dance Scholarship audition in January at UVU.

Following their dreams.

In about 14 months this house will become very quiet and very still. Hmmm.

Otherwise, in other news, Cedars has made mention that they received a couple of phone calls in the last 3 months or so from UNOS offering me second or third place for a deceased donor kidney they had determined me to be a potential match. Basically, if the first person they offered it to failed the cross match (blood test to determine compatibility), then they go down the list until someone works, if at all.

So, rather than wait for the optimal Living Kidney Donor (optimal as a living kidney statistically lasts at least twice as long), they are willing to begin the 5 week protocol to prep me for being ready for accepting a deceased kidney now. It is all just a matter now of waiting for the insurance to approve the protocol being given here, rather than in LA. This is the difference of me not having to drive 5 days RT to LA for a 4 hour dialysis treatment on a special machine. We have that machine here in Bend, OR- praise God.

So far, the insurance has had our request for two weeks.

Yawn.

Somehow they forgot they gave us pre-approval in January before Sarah went for her clinical evaluation in February.

They have evidently started the whole process over. Slowly.

Well. Not bad, if I do say so. A post that would have taken me about 30 minutes to write a year ago? 2 hours and counting.

But, I wrote it.

I promise to try harder. I owe all of you that. You have been so supportive of us throughout these last 5 years.

It may not be much, but it will be something.

I love you all.

Know that, if nothing else.

An update. Not the one we wanted, but an update.

Sarah went to Cedars this past Friday-Monday for her clinical evaluation. This is the next "final" step in her process to surgery. First, they approve her as a donor. Then, she does her clinical where they test her mentally, physically and financially then give a Go, No Go. We begin treatment on me (the series of three treatments to lower my rejection rate) and then one final cross match blood test a week before surgery for the final Go, No Go.

So, Sarah went for her clinical eval this past week and the results went to committee on Thursday the 24th. The committee consists of all the team members from both the donor side and the recipient side. Everyone discusses the results thus far, and if anyone has a reservation and says  "No", then it is over. No, appeal, no nothing.

We got the No.

The reason was given to Sarah, who told me, but as a family we are not wanting to share it. It has no bearing on Sarah at all. She has been the best through all of this and has become a permanent part of this family. We will love her forever, but it is evidently not meant to be.

So, again, we have to put out the call for new donors to be tested as a living donor.

If you have either an "O" or "A" blood type, in general good health (no history of cancer, kidney disease, high blood pressure) then you can contact us at [email protected] and I can forward you more information about the Cedars program. It is located in Los Angeles, but we would pay any of your expenses if you are out of the area. (And those if you are are in the area, as well).

I am still wrapping my head around things. In the last 3 days, I have been through so many emotions and have yet to settle on my final reaction.

At this point, I would just have to ask that you be praying for Sarah. She is devastated about this whole outcome. If you could be praying for her, I would be indebted to you guys. Thank you, so so much!

Love you, Kelli