A year or more out!!!!!

This is a great feeling, and is one of the few this that people get a second chance at, and that is Life. It's 19 months now since I have have the gift of life from my Heart donor. Although I don't know who he was , I really hope to meet his family some time. I now see things different, and do not take thing so serious or for granted. I have always been easy going but now I live as stress free as I can and live life everyday. I am still working out and losing weight, finishing up college, back to working on cars and doing many new thing with social media. If your having trouble or you have stress in life, take a few minutes and look at what might be causing this and see if you can set a path for the right direction to leave it in the past. Find a way to enjoy life and focus on more positive things.

The Holidays and Donating

Well the holidays are among us, and as we are getting ready for Christmas, all we can think about is that the best Christmas present of all, would be a heart transplant for Larry. Unfortunately Larry has been back in the hospital a couple of times since the last time we wrote on our blog. (Sorry we haven't written in a long time) Due to his infections, his body is immune to most of the medicines, and sadly they only have ONE medicine left to give him if he were to get another infection. This is SO SCARY...we can not afford for him to get another infection. We need to get him a heart before that happens. It seems like we are on pins and needles waiting for that call, the longer it takes, the harder it is to wait. Unfortunately Larry can not travel or be around very many people at one time, because of this reason. He can't be around anyone if they are sick, and we have to be careful going anywhere in public with him. Which means our families are coming to us for Christmas this year! He can't be around our extended families, there are just too many people and so our Christmas this year will be small and with our immediate families. We thank everyone for all of your prayers! They help so much! Knowing that you all are praying for Larry and I is what is keeping us strong. We also need everyone to remember to go to http://donatelife.net/register-now/ and register to donate your organs! Please share it with all of your friends and family as well! There are over 74,000 people waiting for an organ right at this moment.

We hope all of our family and friends have a Very Merry Christmas and a safe and HEALTHY New Year!!

I am going to finish with This quote from the Unos.org website. Please read and really think about what you are reading. "Without the organ donor, there is no story, no hope, no transplant. But when there is an organ donor, life springs from death, sorrow turns to hope and a terrible loss becomes a gift."-2009 UNOS Annual report.

In the hospital again.

Well I am bored in the hospital, all my test came back negative. Still just waiting for the heart. I do have the best room and view on the floor. I do want to thank everyone for the donations. It's helping a lot. If you or a family member are have harry problems, may god bless you. Please pass this blog to people you know and donate your organs.

False Alarm and Benefit

Well today is our 2nd wedding anniversary! I am so blessed to have Larry in my life and to call him my husband is even more of a blessing! He is such an amazing person and I can't wait to spend another 60 years together! All I wanted for our Anniversary was for him to get the call for the heart. And today we got that call, they called around noon and said that they had a heart, and that they would need to check everything out to make sure it was good, they did a biopsy and a lot of other tests to make sure everything was ok. They said they would call us around 3 p.m and let us know if it was good and that we needed to pack up all of our things and be ready to leave when they called. My family was already on their way to St Louis and all of our family and friends were waiting by the phone to hear. About 2:30 rolls around and they call back, and the said it was NOT a good heart. Something came back with one of the tests and its a no go. We were devistated. I think I cried for about 2 hours and all I could think of was that I couldnt wait any longer...I can't do this for another 3 months. We have waited 3 months tomorrow, and as hard as it is to wait, I know that we want to have the best heart, not just A heart, but the PERFECT heart! So here we are, waiting again, and even though I don't want to wait any longer, I really have no choice but to hope and pray that day comes soon. I love Larry so much and to know he could have gotten a heart that was not good is scary, so we are so thankful to his surgeon who checked that heart out and found out that there was something wrong with it, if he wouldnt have done that, Larry could have been in the same boat he is in right now. So thank you all for all of your prayers! We couldn't go through this with out all of you, so keep them up please, and I know the next call will be THE call.

My wonderful co-workers are throwing Larry and I a benefit/fundraiser on Oct. 27th in St. Peters at Mark's sports bar and grill. I think it starts at 4 pm and goes all night. they will also have an silent auction. Kids are welcome to come from 4 to 8. After 8 pm the kids are no longer aloud to stay in the bar. I will have more on this later, but I wanted to keep you all informed.There is also a donate button on the right side of this page, if you will not be able to make the benefit, and would like to donate, please feel free to click on that.

Insurance and Another Infection

One day in August Larry got a phone call from our insurance company saying that we had maxed out for the home health care nurses visits and that we owed them an excesive amount of money. About a week and a half after his nurse stopped coming to the house, Larry went to his cardiac rehab to workout and noticed that he had redness and soreness at his IV site. Along with having a new spot on his chest that looked like a big pimple. A few days later, his home health care nurse came to the house on her day off, to teach me how to change his dressing on his IV. When we took the dressing off, we realized there was some yellow drainage coming from the site and his nurse Alex and I were both concerned immediately. As soon as Larry told her he had soreness a few days before as well as the spot on his chest that had started opening up and draining, she told us to go to the ER as soon as possible. When we got to the ER at Barnes Jewish Hospital there were so many people waiting, there wasn't even a seat available. As soon as they checked him in, they took him straight back to a room and started checking him over. I couldn't believe that he got in so fast, when there were so many people waiting to be seen. They said if you have an LVAD, no matter the problem, you get in right away. They realized he had 2 types of infections and they admitted him to the hospital and he was there for a week and a half. They changed his IV meds and made sure that they were working before he left the hospital. Thats why it took so long for them to discharge him. After he was released to go home, he was not feeling well and felt like he had indigestion, he was sick to his stomach and everything he would eat or drink would taste like metal. He called his Dr. a few different times and they changed his medication to figure which one was making him feel this way. They finally figured it out and took him off of that med. He was placed on another IV medication and has felt better ever since.

While he was in the hospital, they figured out that the insurance company had figured the home health care totals wrong and that he was still able to have a nurse come once a week. THANK the good Lord!!

In the mean time, we are still waiting on the call for the heart transplant. It has been almost 3 months of waiting and I am getting very anxious about it all. I know it will come when it is meant to,  but I am not a very patient person, especially when you never know when you could get that call. Thank you all again for your prayers and support through all of this!

My amazing co-workers are throwing us a benefit/fundraiser on Oct. 27th in St Peters. I will have more on this at a later time. Keep checking back for more information.

Getting on the Transplant List

As of June 26th, 2012 Larry was officially put on the heart transplant list!!! WOOHOO!!! Not only is he on the list, but he is ON TOP! Number one in his blood type. Which means we can get the call at any time. As scary as it may be, we know it has to happen to make him better. They always said that the LVAD was just a bandaid on the heart until he can get a new one. They call it a bridge to transplant. It doesn't really seem real that he is now on the list. All that he has done in the last year to lose the weigh and get as healthy as he can to get on the list has finally paid off. At the same time, I am scared to death for him to have this surgery. Most of me is enjoying this time we have while we are waiting for the call, but part of me is scared and anxious and worried and excited all at the same time. We are both ready for the call, every time Larry's phone rings I practically jump to my feet. We have a small bag packed and in the trunk ready to go when we get the call. All we have to do is drive to the hospital, but it seems like we have already been waiting forever. I know it's only been a month and a half, but when you are waiting for your new life to start, it seems like it has been an eternity. It's like you know you are going to get it, but you don't know when its going to happen. In Larry's words "it's like being pre selected for the lottery, but you don't know when you are going to get the money." It could be tomorrow, it could be months from now. Hopefully it is tomorrow, and we keep praying for it to be, but only God knows when it is going to happen. It's also hard to wish that someone dies, before your husband can live a full life. But that is the circle of life, and God's will. I want to thank all of you who are organ donors! And ask those of you who aren't to please consider it. You aren't going to use them when you are gone, and when you can save multiple lives with just a few organs, that is a miracle. And trust me, those people who get the organs are more grateful than ever that you saved their lives. They don't take it lightly at all.

UNOS is United Network for Organ Sharing and is the private, non-profit organization that manages the nation's organ transplant system under contract with the federal government. Larry is Multi-Listed under UNOS which means that you are listed on multiple lists throughout your area. So he is on the list in many different cities that are close enough to fly the heart in. UNOS has a website if you are interested in more information. www.unos.org.

The actual heart transplant surgery is much easier and faster than the LVAD surgery. They say it is only about 4 hours and that the recovery time is not as long either. As long as everything goes well, they like the patients to be up and walking the next day after surgery. He will have multiple Dr. visits the first couple months after the surgery to make sure his body is not rejecting the heart. And when I say multiple, I mean twice a week for months. With any organ transplant, there is always a chance of rejection and they do as much as they can before and after the surgery to ensure that your body is not rejecting the organ.

The Stroke

At the end of May this year Larry went to his cardiac rehab on Monday like he did every Monday. When he got home, he realized that he was having a hard time using his hand. He was trying to eat dinner with a spoon and he couldn't hold the spoon. And when they came to bring his medicine to the house and he went to sign the paper for the delivery, he couldn't sign it because he couldn't hold the pen. We immediately thought it was probably just a pinched nerve and the next morning he called our family Dr. and went in to see him on Wed. Dr. Roos wasn't sure what the problem with his hand was, so he sent Larry to a orthopedic Dr. On Thurs he started driving to the orthopedic dr. and realized that he felt very weak and fatigued. He was having a slight problem with his sight in his right eye, so he called me at work and I came to pick him up and bring him to the Dr. She wanted to send him to get an MRI the next day, however due to having a Pacemaker/difibrilator he couldn't have an MRI so they sent him for a CT Scan instead. He drove to get the CT scan since it was just a mile down the road from our house. They did the scan and he was on his way out to his car to leave and they ran out to get him. They immediately brought him in to the ER at the hospital and told him that he had a significant bleed in his brain (a stroke) and they would have to send him to the big Barnes downtown and see what those Dr's wanted to do. I drove as fast as I could to the hospital and as soon as I got there. When I saw him I immediately noticed that he was slurring his speech a bit and the right side of his face had started to droop a little bit as well. He also said he noticed his right leg was quite a bit weak as well. Within about 30 minutes of me arriving to the ER The ambulance showed up to bring him to the other hospital. They were nice enough to let me ride along. Once we got to Barnes Jewish, they sent in so many Dr's and nurses to get him set up in the ICU. They all talked to us and said they might have to do surgery but they wanted to wait through the night to see if they could control the bleed without having to do surgery. They gave him 4 units of plasma that night to thicken his blood because he was on blood thinners for the LVAD and gave him even more units with in the next few days. The next morning they came in and said they were going to keep him in the ICU and monitor him for a few more days but they didnt think surgery was necessary and The blood should reobsorb in the brain. About a week went by in the ICU and he had improved a little bit and his speech was better and you couldnt even notice the face drooping anymore so they moved him to a regular room. He stayed in the regular room for  2 more weeks and they were doing physical rehab for his are for about 30 minutes a day and it was improving slowly. They decided to send him to The Rehab Institute of St. Louis.

Larry's Version: I had a bad headache that saturday and it went away. This was one of the signs of a stroke. Well I never knew how it was or what a stroke was like. I had just heard of people having bad problems. Well after the work out and lifting weights that day, I got home and noticed my hand was not working as fast as the other hand. slowly my hand and arm were not working or like they were in slow motion. At about 12 am that night my hand and arm were flopping around like dead weight. I was so scared and was crying cause my arm was not working. The few days I waited was getting worse. After we found out it was a stroke and made it to barnes, they were very suprised I was talking and walking due to how bad the brain bleed was. I really think that constant working out and eating right helped me and my body to stay strong. You really never know how much you need your hands and arms till they do not work. I have been working very hard and attending rehab five days a week. I have gotten the strength back and we are working on the small motor skills. One thing I realized after going to my uncle's church was that I still had it good and was blessed because the guy infront of me had lost his arm and was still making it. If he was able to get dressed and shower, then I know I would be able to get back to my crazy self.

I just want to say that we should never take things for granted, and take things a day at a time cause things can be taken from you in the blink of an eye. One last thing, if you find your self saying you hate your life or life sucks, well trade places with a war vet that has lost their legs, or a cancer patient. I'm pretty sure if your walking and talking with out any health problems then things are going ok. There always someone worse off then you.