Thursday, August 5, 2010

I am home and pump free!!!!! I left the hospital last Thursday and I was a little worried when I left that I would have to eventually go back on the pump. I didn't feel the greatest, but I wanted to go home and try this new medicine for a little while. I have been home for a week now and I am feeling great! I have no thought of even going back on the IV! Hopefully it stays this way!

Before I left the hospital I spent some more time talking to "Tim". He was in much better spirits and actually was up walking around smiling. He said that they planned on letting him go home on Saturday! I hope he did! He also said that I was an inspiration to him and he hoped that he could get better like I have and that he could have a good attitude about life. God's work is amazing!

Well, this weekend I am going swimming for the first time in 4 years! I cannot wait! I have been wanting this day forever!

Wednesday, July 28, 2010

Bumps in the road

So...yesterday and today we have had a few bumps in the road. Yesterday while I was still decreasing my old med and increasing my new med the nurses miscalculated the old med and put me on way to low of a dose. Luckily, they caught it before anything bad happened!

I woke up super excited because I was going to be disconnected from my old medicine at 9:00!!! I disconnected and am now only on the nebulizer! I have been connected to some kind of pump for almost 4 years. That thing went with me everywhere. I keep thinking that I am forgetting something. Anyway everything went good, but for some reason I have been having a side effect from the new medicine. I got a little down this afternoon about it but then I decided to get my big girl panties on and deal with it. The doctor thinks that the inhaled medication is irritating my bronchial tubes because when I breathe in a deep breath I have to cough and it is painful. We are trying a few things out to see if it helps this issue any. I tried something tonight and it seemed to help a little. Hopefully tomorrow it will continue and I can get my central line taken out and go home to my boys. I.MISS.THEM. If everything goes as the new plan we will be home Friday and I will go swimming for the first time in 4 years! I can't wait! Even though we had a few bumps in the road and I have to stay a little bit longer its not the end of the world and I will get through this just like everything else!

I spoke to Tim today! It didn't go as good as I thought it would but I think it went ok. First his sister, dad, and grandma came over to my room and I told them a little about my story. I just told them how bad off I was and then told them how great I have been doing. The sister said that she was relieved to know how good I was doing, so that made me feel good. She also said that her brother was mad and that he just thought that he was going to die. We talked to them for awhile and answered some questions for them. A few minutes later they asked me to come over and talked to Tim. I tried to put myself back in his shoes. I spoke to him a little about my situation and then he asked a few questions about the medication that he is on. My nurse interrupted us because she needed me for something so I didn't get to talk too long. Hopefully we will get to finish up our conversation tomorrow.

Hope everyone is having an awesome week!

Tuesday, July 27, 2010

Are you the Answer?

I'm not even sure where to begin with this post. I have so many thoughts running through my mind.

I guess I will start with that my doctor came in to my hospital room yesterday and said that there was a younger guy (I don't know his name so lets call him Tim) that was just diagnosed with PH and was going to be on the medicine that I am on (the one I am switching off of). He asked if I was willing to talk to this guy about when I was diagnosed and how my life has changed for the better? I said, "heck yeah!"

So I said all of this because I read Devotional on Upper Room asking, Are you the Answer? The person that wrote the devotional talked about the possibility that each of us might be the answer to someone's prayer, each day in many ways. I started to think about Tim. Why am I here at the same time he is? I mean, I'm not saying I am going to totally change the way he is feeling about being diagnosed with this disease that can be life threatening, but I can try! I may or may not be the answer to someone's prayer for him but I know that I would have loved to have someone talk to me about everything when I was first diagnosed. I keep asking God to give me the right words to say to him. I can't wait to meet him today if he is still up for it! I will let you know how it goes!

The big switcher-roo I don't usually talk about my health problems 1.) because I don't want to be reminded of them 2.) because I don't want to have a pity party and 3.) because I don't want anyone to think differently of me. But I wanted to document what was going on.

Sunday mom and I headed to Atlanta. I had to be at Emory Hospital early Monday morning for a scheduled stay. For those of you that don't know...I am on an IV therapy for Pulmonary Hypertension. It has helped me out tremendously and I am so thankful for the drug, but there are limitations. I am connected to this pump (the size of a pager) for 24 hours 7 days a week. There is no stopping the meds AT ALL. So that means, no getting in the pool and taking a shower very carefully trying not to get the pump wet. Even though these are little things I would LOVE to get in the pool and teach Josiah how to swim. They just recently came out with a new drug that you inhale (kind of like a nebulizer). I did a lot of research, praying, and talking to Josh and I decided that I wanted to try to switch over to this new medication called Tyvaso. So here I am in the hospital doing so!

Monday I got admitted and we started the Tyvaso. The doctors are slowly decreasing my IV med and slowly increasing the inhaled version. We had a little hiccup yesterday where the nurses mixed my medication totally wrong so I was taking a lot less then I needed but they figured that out before anything happened ..thank goodness! My friend Andrea came up and brought me some delicious Chick-fil-a because the hospital food is... well hospital food.

This is what was for dinner last night. Looks pretty good huh? I thought so, but it didn't taste too good!

Today, everything is going great! I am on a really low dose of my old meds and they are thinking I will be all the way off of them by tonight! Mom and I just went to the gift shop and now we are sitting here waiting on the doctor and lunch! I ordered a grilled cheese and fruit!

Wednesday, February 3, 2010


If you have PH you know that exercising can be hard to do..but I have decided that I need to start at least walking on the treadmill. Today is day 3 doing it, hopefully I can keep it up. I feel so much better after walking on it, it's just finding the time to do it!

Tuesday, February 2, 2010

3+ years ago...

Long story short....

October 2006, I had been married for 5 months. Best time of my life right?! WRONG.....I was passing out and having a fast heart rate. Doctors had previously misdiagnosed me with something else. I passed out on October 1st where my husband had to give me CPR and saved my life. The ambulance got there 20 minutes later where they took me to a hospital in Missouri. The doctors there realized something was really off, so they sent me to a bigger hospital in Kansas City.

After having every test ran on me and being in the hospital for weeks, they finally found out that I had something called Pulmonary Hypertension (PH). Pulmonary Hypertension? What in the world is that I had never heard of it.

The doctors threw the bad news to me that I had this PH and then they proceeded to tell me that I was going to need a double lung heart transplant! I was in shock, but somehow knew everything was going to be okay. We had family and friends fly out to see me (for maybe the last time?) My doctor at the time researched treatments for PH and found the drug called Flolan. (later to find out we would have a love/hate relationship)

Flolan worked great, but the downfall was that I had to have a central line placed and this drug ran through it constantly with NEVER stopping. I thought my life had ended. But actually this medicine helped my "new" life begin!

I have had a few bumps in the road since I got out of the hospital on October 31st, but I have a new outlook on life and things have been going pretty good since then.

I know it has been 3+ years since I have been diagnosed with PH, but I feel like I need to share with others that have it and let them know that there is life after being diagnosed. I am married, adopted a child, and living a pretty normal life (what is normal anyway?!). I don't know if anyone will read this, but I hope it changes the outlook on at least one persons life that has PH.