Saturday, January 28, 2012

He's coming home today!

Hubby is scheduled to be discharged, has his papers in hand, just needs to finish up his treatment for the day then he's out! :)
I made a fresh batch of chili and after the kids get to see him and spend some time with him, the plan is to take them to my parent's house to spend the night so he can get a peaceful night of sleep!! Lord knows he needs it after 3 nights in the hospital!!

Monday and Wednesday are scheduled to be his last two treatments of Plasmapheresis then they tell him he can get the port in his neck out too, which would be great because that is NOT a comfortable attachment!

Here is a picture of us yesterday, his friend Jeremy has been staying with him there at the hospital, he considers Al to be a brother and even though they didn't match for Jeremy to donate a kidney to him, Jeremy took it one step further and found a recipient to donate to anyway, it's been six months and both Jeremy and his recipient are doing great! Great stories come from Al's story and I am so honored to be a part of it!!!

Friday, January 27, 2012

Another update

Thank you for the prayers, they are working!!
Al has been in the hospital since Wednesday. They put a port in his neck which was not a smooth process. It took two attempts, once on the left side, then they were successful on the right side. At one point they considered that he possibly had blood clots, I don't think that's the case though, his veins are known to collapse, I personally believe that's all it was. Painful nonetheless though :/
His first treatment was Wednesday afternoon. It was plain awful on him and he was sick the entire night. Poor guy had a really rough first day. I was praying so hard that this process could be easier on his body. Afterall, I felt bad enough that he had to endure this, but did it have to be SO awful? Well, slowly Al has been feeling much better, I was able to visit him today, he's such a trooper! (I wanted to go sooner, I've had a cold all week, my voice is completely gone, but my other cold symptoms atleast have gotten better) He was up walking laps around the floor when I came off the elevator he happened to be walking right past the door. Thought it was impeccable timing :) He looked really good and was in good spirits through our visit. Man had some needs that only a wife can take care of, and that's all I will say about that! ;)

We ate lunch together and then took a few more laps around. I had to leave to get Acilia from school. I started crying on the way home, tears of joy. I am just so thankful that this has turned around and gotten easier on him just as I asked God. It looks like he will be coming home tomorrow. Treatment should continue through Wednesday. Considering they originally told us two weeks, we are THRILLED that it's only supposed to be a week. We will see how things continue to go, these are just doctors telling us things at this point, I will believe it when I see it, but until then I truly appreciate continued prayers!!

We are so thankful for such a loving and supportive group of friends and family. We are so blessed to be surrounded by so many caring people! Acilia's class has supplied two dinners for us and are scheduled to provide dinners all next week too. I can't even describe what it feels like!

Tuesday, January 24, 2012


My facebook post from tonight after we got Al's biopsy results. We are thankful for any and all prayers! It's not horrible news, but it's not the best news either. We can certainly work with this though and are optimistic that the doctors are right and this will all be resolved in a few weeks!

Thursday, January 19, 2012

Feeling doomed

Al went for more blood work today, his creatinine is holding steady at 2.1
Not at all as low as we would have liked (normal is not to rise above 1.3), but the optimist in me is a tad relieved it didn't go UP any more since his labs on Sunday. I want to believe this is a very slow and very early sort of "rejection" I hate to even use that word, but to be factual about things, I have to realize the facts. The fact is, he is in early rejection of the kidney I gave him 2 years ago. We want it to last a LOT longer and we want for this to just be a little "hiccup" on the road of recovery, but you just never know when your organ is going to be done working for your body and that is a sad fact. I feel defeated, Al surely has a whole host of thoughts going through his mind. I know he knows I am there for him, but personally I think this is where we lack. I can't read his mind and he certainly does not open up to me the way I would if I were him, so I tread lightly. I don't want to say the "obvious" things, I don't want to say too much, yet I want him to know I care deeply about his feelings as he goes through this. My prayer is still that this kidney will continue to work for him. That the signs of rejection are just "signs" and that we are catching it before it gets worse. He can easily still function where he's at, and there ARE options to stop his body from fighting it. His meds have been upped, he is scheduled for a biopsy on Monday, that will tell us exactly how many antibodies his body has created to take down the kidney. Once we have those facts, we move forward with the plan. Al is in for it though, the plan is not an easy one. There are no freebies here, he will most likely have to do some ugly treatments (think chemotherapy type treatments). Eye on the goal, keep moving forward, this is not the end yet, it could be worse, and I keep praying that it doesn't GET worse.

Tuesday, January 17, 2012

Anxiety inducing

Al and I went yesterday for our 2 year post op visit. I got a glowing report, I am now a "grad" I don't need to go for post op check ups anymore. :)

Al on the other they put it, he's "high risk for rejection". This isn't supposed to be a surprise to us, apparently they've been saying that all along. Makes sense, it's a non genetic kidney. Of course his body will want to fight it. His body seems to be a little more diligent in fighting his new kidney, so there are some minor signs of rejection creeping in. That is a scary and daunting thought. It's easy to focus on the word "rejection" and not allow God to keep peace in our souls. It's easy to get anxious about this and let gloom and doom take over. I had a lot of praying to do on the way home from our appointment. We were deflated and I can't speak for Al but from where I was sitting, he had a lot on his mind on the way home. It was that awkward silence, don't quite know what to say, don't quite know if you should joke about it to keep the mood light or fall into a grief mentality. The bottom line is, transplanted kidney's do not last for ever. It was never a matter of "if" it would reject, it was always a matter of "when". I pray that "when" is not ANYTIME soon! You have no idea how much I pray about that, but the fact is, the time will come and these signs are just reminders that we need to stay ahead of the game and stay on top of his monitoring. He gets labs done regularly to check his kidney function and he takes a slew of medication to suppress his immunity to keep his body from making antibodies that will think the kidney is a foreign body that needs to be fought. The meds he takes have been increased now, and he may need a biopsy on the kidney in the next week, but the doctor says we are not to "worry" just yet. I am holding on to those words, and increasing my prayer and asking anyone else that can and will to pray with me. Specifically that his creatinine levels go DOWN. At the current moment they are creeping up and have been over the past year. At the time of transplant his creatinine was 1.3. Perfect match to where my creatinine is today, 1.3 and that's technically where he should stay at! He is not though, he is at 2.1. It can fluctuate slightly based on how well hydrated a person is, but it needs to stay down. His kidney function needs to be saved and there needs to be no more damage done to it.

Monday, January 16, 2012

Tattoo link up

A Mommas Desires and Pacifiers

Getting involved with this link up, even though I've talked about my tattoo here before, it's just something I want to partake in :)

As you know I am Al's kidney donor. Feels like it's old news, especially here, but the story never changes my passion for organ donation so I use every chance I can to talk about our journey, in hopes that maybe just maybe someone will consider being a donor, whether it be organs or blood, living or deceased!!

On the topic of tattoos. I enjoy seeing tattoos, I just was never going to get one. When I gave Al his kidney; I knew there were going to be scars involved. I was relieved that the process of removing a kidney has gotten a lot easier since his dad donated to him 20 years ago. At that point when you had a kidney removed, it was through your back, the incision was about 6 inches long and they had to spread your ribs. Can I say OUCH!?
When I donated, they told me that it would be done laparoscopically and then there would be an incision that was the size of my surgeon's fist for the removal of the kidney...sign me up right?? The scars would be thin little lines and barely noticeable when they healed, but I didn't want them to just "disappear". I wanted them to be showcased. How better to do that than to get a tattoo around them? Oh wait, I said I would never get a tattoo? Well, what's the most sensible way to show why you "never say never" well, of course it's to get a HUGE first tattoo! I think the artist that inked me thought I was a little nuts when I showed him what I wanted, and  then told him it was my first tattoo; but it meant something to me and because of that, I was determined to get it done. And, do I need to mention I pushed an 8 pound, 9 ounce baby out without drugs AND recovered from a kidney removal with no pain meds? I could handle a tattoo. And I *did* handle it, on the outside anyway, I smiled the whole time, but man, it didn't feel that great to get it! It was a constant scrape at my skin with a razor blade sensation that didn't let up for 2 hours! I walked out with art on my abdomen to showcase the scars that I proudly display. 
And the point is: "Be a Donor!"

Thursday, January 12, 2012

Dialysis days

As we sit, the snow falls outside. First real snowfall of the winter and it's January 12th. Yesterday was a springy 54 degrees and sunny. Today I was prepared for the snow, everyone said it was coming, what I was not prepared for was the reminiscent thoughts of Al's days on dialysis. He was on peritoneal dialysis, which means there was a tube in his belly in which he would hook up to a machine that was situated next to our bed. Each and every month, Fresenius faithfully delivered 1,000's of pounds of dialysis solution in boxes that we would stack up in the corner of our bedroom. I used to get great satisfaction out of piling the boxes taller than me, so I could line them directly along the wall (4 rows, stacked about 12 boxes high) allowing them to take over as little space in our room as possible. I was clinging to "normal" anything I could do to make our lives feel normal was what my mission was. I enjoyed draining the remaining solution into the toilet as I wound up the tubes that went from the machine all the way to the bathroom where it dripped into the toilet each night. I enjoyed taking the boxes out to the recycling bin every morning and I enjoyed the end of each month where the boxes were at the lightest load, never leaving less than about 10 boxes before the next shipment. Why does snow make me think of dialysis? Because the winter months were the worst. The deliveries each month came to our backdoor, there was a hydrolic "hand truck" that eased the boxes up the first set of stairs, then it tracked snow and salt and wetness through my downstairs to the second set of stairs that went to the bedroom. Foot tracks, that were simply unavoidable. I was left with pounds and pounds of boxes taking over my room and a trail to clean. It was normal for us, that was normal for 4 years. It was a fact of life. A simple fact that without it, my husband would not have been able to live through. It was a sacrifice for all of us, yet it was a better alternative to the hemodialysis (blood straining) or the imminent death that he faced. It was our only option and it sucked. It sucked. It sucked. I was just his wife, I didn't actually have to do those dialysis treatments, I was just the helpless bystander that worked diligently to keep life normal for all of us. Now that I look back, life was so far from normal. It truly was. There is nothing normal about having a husband on dialysis, waiting for a transplant when he was supposed to be in the prime of his life. I made it normal. I have come to realize, that normalizing it all, was *my* self defense. I had no control over my husband's health, but I did have control over keeping my house clean. Keeping those salty, snowy tracks off my wood floors and getting those empty boxes and bags the hell out of my house. Little did I know, all of that time that I had the kidney he needed. What will happen next time? I don't have another kidney to give. This thought is always in the back of my mind. Now that I know what dialysis is like and waiting for an organ, it's a place I never want to visit again, yet it's sort of inevitable. Kidney transplants don't last forever, and there will come a time that we will have to face more dialysis, more waiting, only next time I will know what we are in for. I won't have the bliss of "shock". I will have to the cold hard truth that it plain old sucks. My constant prayer is that this transplanted kidney will last for many many many years, get him through his 30's, 40's, even 50's, 60's or 70's. I have my hopes and dreams and prayers. I don't want my husband to go have to through that again. Enough is enough. Two kidney transplants in one life is more than enough.

Sunday, January 8, 2012


I am giving a lot of thought lately to why I want to become a nurse, mostly because it gets me excited about the prospect of applying to the program next year. I hear people talk about how much nurses make and that is not something I really considered when I decided I want to be a nurse. I am a stay at home mom at heart. My husband does a great job of providing for his family, so technically the money I make is going to be a welcome "extra" in our life. A savings account, a little extra cash in my pocket. It's going to be nice I think! I have been on a budget for a year now as you know, and that budget mindset has got me thinking of the future and those paychecks I will be earning as a nurse. I am excited to open my own checking account and offer some extra money in places such as savings first and foremost. Then I have charity in mind, I have a huge heart for animals and when I say I tear up when I see the ASPCA come on a commercial, it's more like waterworks than "tears". I am excited to give a little extra to our church and to prayerfully see much more in our budget envelopes at the end of the year. I write this out right now simply because I want to hold myself accountable for putting my work to "work" so to speak and to be an active part of our finances. All these years I've felt as though I was spending my husband's money and I am thrilled to finally be considering my own money (even though we are married and what's mine is his, and vice versa) it will be nice to have a paycheck with my name on it that I've worked hard for! 

Sunday, January 1, 2012

One Word 2012

Last year's experience with commiting to one word was so inspiring, I am ready to share my word for this year. It came to me this morning as I was waking up. God has such impeccable timing! I asked him for a word that will speak to me throughout the year, and this word has already begun making an impact, so let's just call it official and claim it for the year!
My word is:

I need patience to get through the next year before applying to the nursing program. (Every part of me wants to rush into just applying, but my soul says wait one more year so I have all my ducks in a row.)

I need to have patience that God is in control and HE know when we will move out of this home and into a new home. (Anyone that has been reading *knows* every part of my being wants to be in a new home, one that is more condusive to our lifestyle and in a better school district!)

I need patience with my children. (I am sad to admit I feel a lot less patient with them now that they are older and going through hard phases with not listening!)

I need to have patience with my husband, when he works long hours. (Which is more often than not!)

I need to have patience for the simple moments in life. (I have been working on this for a while, stopping what I am doing to have a quality moment with my kids. I am always in such a hurry to move on to the next thing, that I forget to be IN THE MOMENT.)

"Patience is the key to contentment."