I haven’t posted in awhile. I don’t post that often anyways because I am a slacker, but it has been about 6 months since my last post. Maybe it was from pure laziness, lack of energy, or just not wanting to communicate with the outside world. Who knows. Our family has had a jam packed last 6 months, to say the least…
2015 was a year of many challenges, including 4 ICU stays for me. Even though the hospital stays and doctor visits seemed never ending, we did manage to get some things done in between. For example: we sold our old home that I bought in 2004 and moved into a new home that is ADA compliant and works well with my medical needs. It is 2x the size of the last home, so that has been an adjustment. More to clean, more walking to get where I need (which is good for me, but difficult at the same time), and just overall getting used to a new home. I have never lived in a place like this. All nice and fancy like. My hillbilly roots are like, “WHOA”! I love our new house and am glad we made the decision that we did to move here. It has benefited us in multiple ways, and even has given Phoebe a new lease on life it seems. She is more active and has lost weight. We attribute this to her not having to use steps anymore. This house is completely flat, not a step to be found. Which is wonderful for the both of us!
Another challenge has been my health. For some reason my body thinks that it needs to latch on to infections and virus’ and not let go. I have been sick since November, and cant seem to shake it. On top of being sick, my central line is wanting to come out. I am not ready for a replacement, as that will mean another hospital stay. I will do it when I have to, but not before. These lines aren’t meant to last a lifetime, but I haven’t even had mine 2 years yet. The “cuff” which holds it in place under my skin in my chest, seems to be defective and the balloon behind it has started to deflate. At one point right before Christmas, the cuff had actually come out and you could see it when I changed my dressing. As aggravating as it was, my nurse Julie (my angel), has let me manage it on my own since I don’t seem to be systemic and the line still has some “tug” on it. It will need replaced, and I will probably find out tomorrow at my doctor appointment, when that is going to happen. I am also in the process of getting the bariatric sleeve procedure done, once I finish the paperwork and get with insurance and start my initial meetings with the docs at Ohio State. I have to go out of state to get this done due to the fact that no one has ever performed this surgery on a PAH patient, in the network of the hospital I go to. So, I did my research and asked around. It was either Ohio or Boston, and since Ohio is closer and their reputation is pretty decent, I decided to go with them. My team is close and can be there if needed. It is a risky surgery for anyone, but even a higher risk for me. However, it is necessary. I need to be at a certain weight to get on the heart/double lung transplant list, and I am never going to get there be sedentary like I am because of my PAH. I try to exercise, but my body decides what my limit is – not me. If I overdo it, I’m asking for it. That brings me to where I am at with it. I have to get this surgery, not only to possibly prolong the progression of my disease (losing weight will take the added pressure of being “obese” off of my heart which in turn could help my PAH), but to be able to have my name on that list – if and when the time comes for me that I need a transplant. I don’t want to hear that there is nothing left for me because I am too heavy in their eyes for transplant. I am going to do what I have to do to stick around for as long as I can! Hopefully, within the next few months that process will start moving and I can get this stage over with and move on to the next!
A number of emotionally draining events have taken place in 2015 as well, especially in December. I made the decision to put one of our dogs, the oldest Blaze, down. He was getting to the age where it was coming and needed to be done. It was hard and I honestly hated doing it. I miss him, as does the rest of the household. Especially my mother. He was her granddog. He really was her dog, he had attached himself to her in the last few years; followed her around, slept with her and everything in between. We were having issues with him using the potty in the house, and it just became overwhelming. His ashes are now on the mantel and soon I will have a picture printed to put on his memory box with his name tag.
December, like I said, was an emotional month. Not only was it our first Christmas in our new home, it was the first Christmas in 12 years without Blaze. It was bittersweet. Then trying to bring the New Year in happily, only to be thwarted by my husbands former job. Notice I say former. He was let go on December 29th. We both believe it was due to his use of FMLA time, but they cited it as “not performing job duties as assigned within the 165 probation period” of a new position. Not only was he doing his job, but also another position that wasn’t filled and was at the beck and call of the many people who were over him in position. At first it was a shock, but I worked for this company and know how they work. They like to fire the good people who actually know what they are doing and can fix things and make the place run correctly, and keep the ones who are willing to bend their values and morals for a corrupt company. It’s only a matter of time before all the good people are either fired or leave of their own volition. Instead of being bitter about it, we are trying to look at it like it was a blessing in disguise. All will work itself out in Gods time and in His plan. Have to have faith in that! He will provide!
Entering in January, I’m still holding my breath wondering what’s going to happen next? So far so good. Today I found out that I have officially been made a Support Group Leader for PHA in Columbus, Indiana. I’m so excited to take on this role. I’m a natural leader and feel that it is my own personal mission to bring as much awareness to patients, caregivers and the public – as possible! If my story, my advice, my friendship…can change just one life, or if my awareness raising skills help fund a cure – then I have totally served my purpose! I owe a lot to the Pulmonary Hypertension Association. Giving back to them through leadership, is only a small bit of a thank you. I hope to make them, and those who believed in me to do this, proud. I will definitely be blogging about my experiences as a SGL (nothing private will be shared).
I also decided that starting in January we were going back to church. First Sunday of January, that is exactly what we did! It felt so wonderful to be back in our church, our home. The Ridge speaks to me directly every time we are there. The topic was “worry” and basically not to do it. It couldn’t have been more appropriate for what I was doing at the very moment I read the pamphlet. David pointed out to me that there was a new women’s bible study starting that coming Thursday, so I signed up for it. I want to meet more people at the church and have that fellowship with the women of the church. Thursday came and I went to bible study. We are doing an 8 week study on “One in a Million” by Priscilla Shirer. She is a powerful speaker and loves the Lord. It was nice to hear a woman’s perspective on learning to have a closer relationship with God. I have been doing my study this week and am looking for to Thursday morning.
Wrapping up, I feel like I need to ask for prayers for all of the families who have lost someone recently, or ever. The pain they are feeling is real, and they need prayer warriors to lift them up into Gods healing grace. We have lost so many in our PH community lately, those families also need lifted up in prayer. My heart breaks for them. Breathe easy is always what we say. Breathe easy, sweet angels…
Here’s to a New Year that seems hopeful. Hopefully my blog wont stay as dormant this year! 😉