Bad weekend

Marty passed out on the way into work last Thursday. He drove to work and got dizzy walking in, some co-workers found him a chair and he went out in the chair. He was rushed to the hospital near his work and they found his blood sugar was over 700 and his blood pressure was 212/106.

He had still not been sleeping leading up to this episode. He had some swelling so we used the strongest strength of dialysis solution. Unfortunately that solution is high in dextrose, causing his blood sugar to soar and him to get sick. They were able to treat him in the E.R and get it down.

I was home getting ready to take Conner to baseball when the call came. It was Marty telling me he was "okay" and "don't come". I called my friend Robin who dropped everything to take me to him. His work is 65 miles from our home and quite a drive, I needed to be able to drive him home in our car. She took the kids home with her and let them stay the night. The whole way to the hospital I was texting, calling and updating my Facebook status. It was quite a eye opener to what we will face when "the call" comes someday.

We brought him home and spent the next few days trying to get him back on track. He did get some sleeping meds from the doctor yesterday that seemed to work fairly well. His blood pressure is down now and we are only working on battling the blood sugar numbers now. We are hoping to get this figured out and keep him going until he gets his transplant.

Above all we know God is in control and we are incredibly blessed. It has been amazing to see the support our friends have given us and how God has provided.

Caring and Giving

My friend just commented on me being a caregiver. It sounds weird to me but I guess that is what I am these days. I wish I could sit here and write happy, cheerful, joyous things but right now I cannot. I am happy, joyful and thankful for many things. At the same time I am tired, weary, worn out and trying to not worry.

Last night was a bad night, that followed a bad night the night before that. Marty has not been able to sleep well at night. This has been going on for about four days now, he lays down and gets congested. Then he feels like he is wheezing when he lays on his right side. All together not good when you are already tired. He goes to sleep and the about 2 or 3 am he gets up and is restless beyond restless. I want to help him and cannot help but wake up and try to help him. The thing is, I cannot help him because it is like trying to put a band-aid on a gapeing hole.

We have tried Tylenol P.M., Sudafed, Advil P.M. to no avail. so far. Tonight we are trying a wedge and Benadryl to see how they work. I feel so bad for him, he gets up and goes to work all day long. He gets home at 11:30 pm and sleeps until about 2 or 3 am.

After the long night, I asked for some prayer from friends and church. The good things started to happen right away this morning. First the news, his blood work came back GREAT! he can actually drop a medication now. His dialysis numbers are good and he only has to work on a couple of things.

Then the news, he is going back to working nights. While I miss him, I love that I can sleep and then help him while he sleeps. I will be much better equipped and able to function when he needs help. I think this will be better for the kids too! The have missed their dad coming to functions and spending time with them. He also will be off on Saturdays and Sundays now! So life is good all around.

We are still waiting, keep praying. Thank you for reading and taking the time to pray for us. God is at work even if we only see little bits of it, we know he is there.

Tired of trying and tired of crying

You have fed us with sorrow and made us drink tears by the bucketful. Psalm80:5

How long must I struggle with anguish in my soul, with sorrow in my heart every day? Psalm 13:2



When do you stop trying so hard? When do you just walk away and wait on the Lord? These are some questions I have been praying about lately. I am by nature a person who wants all my relationships to be good and really struggle when things are bad. It is hard for me to let go and let God, it is hard for me not to want to fix things. I have for years been waiting for healing in a particular relationship. Waiting for things to change but yet nothing ever does. I finally saw a glimmer of hope only to have that darkened. I have tried so hard for so many years only to be knocked down over and over. My heart aches with the longing to have a close bond like other people do with their siblings.

I have thought over every move and decision I have made. Questioned what can I do different? Wondered why? I have tried harder than most people would. I am just ready to give up and not try anymore.I am tired of trying, tired of crying, tired of aching. It's not fair to Marty or the kids to see me cry and lose time with me over it. I cried most of the afternoon over something and don't want to cry anymore.

My big fear is closing the door and making a mistake. I don't ever close doors on people and have only done that once in my life. I will leave the door cracked but I am not going to be actively pursuing this person.

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.

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.

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.

***************************************update**********************************************************************************
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.

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 jjmpg@yahoo.com 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.