Sunday, April 19, 2009

Two years ago, when this journey began

I am so thankful for my blogging buddies Andrea and Di. They both have helped me write more to this story by asking questions and I just want them to know I am grateful.

Andrea's questions
When and how did you find out that Marty's kidneys were bad? I know it's been a while, but were there signs or symptoms?

The story began two years ago this month. Marty had been seeing his doctor every few months and finally gotten the insulin pump. His hemoglobin A1C was the lowest it has ever been and things were looking good. We had noticed his blood pressure steadily rising and thought it was due to his high stress job. He started taking blood pressure meds and noticed that he was constantly coughing and congested. He needed a refill on his prescription and told me "Find me a new doctor." which prompted me to ask "Can't you just go to doctor D one more time?" and he said "No!". It was very strange for him to make such a request. A doctor recommended by a friend came into mind and I was able to get him switched that same day.

We went in the next day and one of the first things the doctor did was remove a blood pressure medication he had been taking. Come to find out that it was causing Marty to cough and constantly feel like he was sick. I guess blood pressure drugs ending in pril, can do that to you. That was the first sign the other doctor wasn't on top of things. Then he proceeded to prescribe Marty 3 more blood pressure meds and a patch he would have to wear continually.

The next day was a Wednesday and he got up to go get his blood work done. We got a call at three o'clock the same day from his doctor. He wanted to see us the next morning and we immediately knew it was not good news. Our biggest fear was that Marty's kidneys were failing and it was something that I had long prayed would not happen. He had been so upset about turning 30 a few months before and come to find out that was why. His dad experienced Kidney failure at the same exact age.

The next day came and the doctor confirmed our worst fears, Marty was in End Stage Renal failure. He immediately referred us to a endocrinologist and a nephrologist. He also scheduled a renal ultrasound with dye. Thank God for his mercy, we saw the endocronlogist who confirmed the diagnosis but told us to not get the ultrasound. He informed us that any test that injects dye is very hard on the kidneys. If you already have renal failure it will cause your kidneys to completely shut down.

Besides the high blood pressure, Marty really did not have any symptoms. The symptoms of high blood pressure often mask the symptoms of renal failure. He did have some swelling in his ankles. We just did not notice the swelling because he has thick ankles normally. His other doctor had been sending us postcards informing us that his creatnine, BUN and protein were high. But when he went in the doctor never mentioned renal failure or warned him of anything. The other doctor completely missed the whole thing and dropped the ball. If Marty had not felt he needed a new doctor, who knows what would have happened. We know that God's hand was upon us and leading us to the new doctor.

We were shell shocked, our world crumbled down before our very eyes. Suddenly our future was clouded and we could not see anything very clear. We realized that so many things were now out of our control. We immedialtely started praying and asking everyone around us for prayer. One of our friends told me she was praying "That God would be glorified through Marty." and so far I think that has happened.

We started meeting with a nephrologist and following a strict renal diet. We found out Marty had about 30% kidney function left. We fought hard to preserve whatever was left and prayed that he would never have to go on dialysis. We immediately asked for a referral to transplant and knew we wanted a kidney/pancreas transplant. We wanted to go to LA and even ignored advice that Stanford was better. Only when we got a letter from Stanford did we decide that maybe God was leading us there instead.

We were able to hold off dialysis for a year and a half. One of the only reasons he went on was because he needed a angiogram. The dye in the angiogram would kill off his kidney function and he could only get it once he was on dialysis.

I didn't start blogging about it right away. But once I did, all the posts are labeled either kidney disease or transplant. Someday, we will be able to look back and see all the wonderful answered prayer and miracles that have happened. Right now, we aren't looking back and we are taking things one day at a time.

Friday, April 17, 2009

Matthew 6:33-34

33But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Something that I need to focus on each day.

Thursday, April 16, 2009

A story and some questions answered

My good friend Viviana just passed on a story to me of a family that donated their baby's organs. The family made the difficult decision no parent ever wants to make and donated their baby girl's organs. She ended up giving life to a 49 year old woman in San Francisco who needed new kidneys. Wow, this hits home and is exactly the face we needed to this story. It helps me to remember who we are praying for and the decisions they face. I linked to the story and if you click on the title it will take you to the blog to read.

Last night some friends were asking questions about donation and how it all works. I thought maybe I needed to explain the best I can to help you understand even if I have limited understanding. One thing is Marty has now been on the list 17 months they told us the wait is anywhere from one to three years. So we are halfway between that number now, so anytime the call could come. He has not been active status that whole time, only since November he has been active. What is the difference? Now he sends a monthly blood sample to the histo lab at Stanford. When organs become available they check the blood samples of candiates and find the closest match or perfect match to the organs. I think they check those highest on the list first. If you are a exact genetic match they give it to you.

Marty still does have his kidneys, he still goes to the bathroom normally. All it means is the urine the kidneys produce is bad. The kidneys no longer remove the toxins from his blood and the toxins stay in his body. The dialysis removes the toxins from his body for him and when the fluid drains out it is urine colored ( sorry for TMI) interestingly enough. The catheter is in his side not far from his belly button. We attach it to the tubing set and the fluid goes in and out that way. The fluid sits in his abdomen for several hours and draws out the toxins. That is why lately he has been dehydrated from too much dialysis.

When he gets his transplant it will come from a deceased donor. A person cannot live without their pancreas and it has to come from a deceased donor. The kidney could come from a live donor but the organs both have to come from the same person. After his transplant we will live in Palo Alto for up to three months. We have made arrangements for our kids to be cared for and our house to be cared for while we are gone.

If I haven't answered your question, please let me know. You can ask me anything and I will answer.

Questions from Di:
Will the kids be with you? Not for the first month, they will be at home being cared for by my mom or my friend Robin. Then we may bring them up to be with us as time goes on and Marty gets better.

Do they ever tell you when he is "at the top" of the list? Not that we know of, we will just get the call. As time goes on we might find this out.

Or is that just something you see on TV? I think for lungs and hearts you know this but not for kidneys. I am not sure but all indications are this will not happen.

Does your insurance (or someone else) reimburse you for having to stay so close to the hospital for such a long period of time? No, the insurance pays 100% of everything related to Marty. But for me it will be all out of pocket expense. We have heard there are discounts on hotels and maybe some housing available. We have been told not to worry about this part that it will all work out. I am sure it will be expensive.

How long will you have to get there once they call? They have told us between 12 and 24 hours.

How far away is it? It takes about 4 hours to get there. It is about 400 miles away.

Does Marty plan to work until that time (if able)? He plans on working all the way until he gets the call. He has already filled out FMLA papers and we have taken some steps to get business taken care of while we are gone. The only way he will quit work is if he is physically unable to work.
*****************************question from Caroline******************************************
My reader and friend Caroline asked this:
Who will school the kids while you are gone?
My mom will hopefully be able to come care for the kids while we are gone. The plan is for her to come stay for four weeks at our house. If she cannot come then my friend Robin will care for the kids. If my friend Robin cannot care for the kids then our friends Larry and Joyce will.

This year I purposely bought curriculum that can be self taught if needed. So that if I left the schooling could continue with minimal interuption. Of course ideally if things would happen during the summer that would be even better. Then there would be no need for school work to be done.

After the first four weeks, we will look into having the kids come stay with us. It might not be possible but if so then they can come. I am sure it will all work out when the time comes and many people will offer even more help.

Tuesday, April 14, 2009

A few things

Conner said today "We have a half a majority." Marty and I cracked up at that one!

I have noticed on my blog tracker that I have some new readers. I would love to hear from you and find out how you came to my blog. It so fun to get comments and get to know your readers. I also thank my long time faithful readers for sticking with me when my blog has become depressing at times. Thanks for all the emails and encouragement, it has meant a lot to me.

Also, I set a email up so that my readers can email me if they want. My email for the blog is if you are a little gun shy on leaving a public comment. My regular email is still in effect and if you email me there please continue to do so.

Anybody have anything they  are wanting a update on? or something you would like to hear about. Send me a post idea.

Thursday, April 9, 2009

Coffee catch

Conner has taken to making me coffee. I just thought he enjoyed doing something nice for his mom and making me happy. He likes to make it and bring it to me before I get up in the morning, it is really cute.

 Last night he wanted to help by cleaning up the kitchen and set up the coffee pot for the morning. I told him not worry about it and I would take care of it. I told him it was not necessary to make me coffee that I could do it myself. To which he replied "Well, the coffee is not just for you, I drink it too." then he proceed to tell me that he has been drinking coffee this whole time. Nice way to find out my kid has a coffee addiction that I didn't know about. OY VEY!

Wednesday, April 8, 2009

In case your wondering

Marty is starting to feel better. We found out on Monday that he is "dry" meaning dehydrated because too much fluid has been removed during dialysis.

 So we back off on the amount of dialysis and changed the solution strength to the lowest possible. He started to feel better the very next day and has been able to eat again. Please continue to pray that he tolerates this type of dialysis and never has to go on hemodialysis.

Sunday, April 5, 2009

Spring break

 YIPPEE! We have a week off and we intend to enjoy it. We are going to go to the park and do many things this week. I am so glad we have no baseball practice this week and can see our many friends that we never get to see.

We had our annual pancake breakfast at church today and for the first time brought friends. Then the kids hunted Easter eggs and played with friends. I have been forgetting the camera lately so you will have to trust me they looked cute. EDITED: our friend Angela sent us a picture of Elizabeth.

Elizabeth is counting the days until she is nine. She is wanting to redo her bedroom for her birthday, roses and hot pink. The comforter she wants is from Target and has teal, roses and is pretty cute.

Conner is liking his break from baseball. He is doing great this year and making tons of progress, he made a great stop out in right field the other day.

As for me, I intend on being lazy all week and just enjoying life.

Did you see my new layout? I got it at shelsscraps.blogspot. They are free and really easy to put in the layout. Maybe you can find one for your blog. She will also make them for a really great price, the link is in the title and you can click on over.

I think.... I have reached the angry stage

So I think that I just feel angry. It's not that I don't trust God because I do and I understand this is his will for us right now. It's just hard, hard to live and hard to go day to day. It is hard that life is on hold, it is hard never being able to plan, it is hard never knowing.

Marty has been sick most of this week. He has been so nauseous that he can't eat anything without getting sick. He was able to eat yesterday but it all came up later. He is taking pills but it is not working, we don't know what the cause is or if it can be fixed. He is tired of being sick and I am tired of him being sick.

Sometimes I feel like people just don't get it. Being asked to do stuff that is just not do-able but still doing it because people don't understand. I just have thin skin these days and it doesn't take much to upset me. I hate feeling that way and know it is just stress related.

I am allowing myself to feel this way and know that it is okay. I can't bottle it up and hold it in, it would only make it worse.