Sorry this has taken so long to get out... I've been a bit overwhelmed by it all and quite frankly have just been hiding out in Farmville and FarmTown. The visit itself went well. We both really liked Dr. Shah and she's a straight-shooter, which I especially appreciate. There were no slam-dunk answers that came out of this meeting though. So if you're wanting to know whether or not I will be listed for a lung transplant, the honest answer is that we just don't know yet. One thing she was able to say with certainty is that she doesn't believe that I have the most aggressive form of the disease, nor do I have the least aggressive form - I fall somewhere in between. That gave me a little better prognosis than if I had the most aggressive form but a little worse than they had originally diagnosed me with in Chicago. Right now, if things continue at the trajectory they are at, I will not live 5 more years but possibly 3, best case scenario and I am not serious enough that I need to be listed immediately. We do have some time.
For now, everything is on hold until the end of January. I went through a battery of tests last week and something of concern showed up on the CT scan regarding my heart. They will be doing further testing of that in January and we'll know more then whether I will be a good candidate for a transplant - medically anyway. The only thing I really need to work on that I have ANY control over is losing about 50 pounds. Actually that should be easier since they are weaning me off of one of the meds that cause weight gain. We discussed the anti-rejection meds and my reaction to the higher doses, and while it's not ideal, she believes we can manage with lower doses that my body can withstand.
The fact that I have AB Negative blood turned out to not be as big of an issue as originally thought, so that was good news. The heart issues are hopefully nothing serious enough to keep me off the transplant list and something that can be fixed, or bad enough to add me to a heart/lung transplant list and that will place me high on the UNOS list. Won't know any more about that until after the further testing.
That's the medical side of things... then there is the insurance. It turns out that the insurance that I have (Aetna) will not cover a transplant done at Vanderbilt. Good news is that this is open enrollment month and I was able to call today and switch over to United Healthcare, which does cover Vanderbilt, so that was a major hurdle that God answered in His perfect timing. Then again, before you start jumping for joy, I only have COBRA coverage until March and it is very, very expensive. We actually have to stop paying our mortgage to cover it, but after talking, prayer and fasting, that is exactly what we are going to do for now. Regardless, I need the insurance for as long as I can get it.
As far as whether I am going to go ahead with moving towards a transplant is a very gray area and one that is causing me the most angst. This is where I really need my praying friends to stand in the gap for me. There is a lot to having a transplant besides just the major surgery that it is. For one thing there is the cost - even with insurance. Then, if I do get listed, I have to stay within 4 hours of Vanderbilt at all times, which means traveling to visit the kids or anything is out for however long I am listed, in case a lung comes in. The wait could be days or years, if one comes up at all. Most people die waiting. If for some reason I do get a transplant, I would be in the hospital for 2-4 weeks and then we would have to move to Nashville for at least 3-6 months and live within 15 minutes of Vanderbilt. Now if I have to live in a city, I have to admit that Nashville is exactly where I'd want to be. If we can sell the house, that won't be as big of an issue as it will be if we can't. Even in the best of times, we couldn't afford both and with the economy the way it is now, we're not sure we'll be able to sell the house at all. Also, Oliver would NOT be able to work as he would have to be with me round the clock for my care. The greatest risks would be infection or rejection and the first year is the hardest. Even with the transplant, the average life expectancy is only 5 years and most of that will be spent in a medical setting. Right now, I have a one to three year life expectancy from the lung disease itself and at anytime one or more of my organs can just shut down because they are not getting the oxygen they need to function. It would be a lot to go through for not a lot of payback. And of course, there are no guarantees that I would even make it off the operating table.
Some days I feel like forging full steam ahead and going for it and other days I don't think it's worth it. Most days I'm caught somewhere in between, feeling like I'm reading a novel of someone else's life and expecting to find all the answers in the next chapter, all neatly bundled together. I do a lot of praying, a little crying, and a whole lot of escaping... That's where Farmville and FarmTown have come in handy. There I can control my environment and if I don't lilke something, erase it and start over. If only life had a delete button.
A few years back I applied for disability and was denied. Now they are saying that I cannot reapply until I am 65 because I have not worked enough quarters in the last 10 years. I will not live until 65. The ONLY chance I have at getting the insurance to continue is if I can get disability. So, I am going to see a lawyer to fight for it. I really need God's favor here. Without it, all chances are right out the window of this even being a possibility. So my life literally will depend on someone in the government making the decision... at least for now. I'm sure I don't even need to tell you what that does to my stomach when I think about it. Ugh.
Idiopathic Pulmonary Fibrosis is a nasty disease. It literally sucks the breath right out of you. If my organs hold up, I can look forward to basically suffocating to death. I have to admit that while I am not afraid of dying itself, suffocating scares the daylights out of me. I try not to think about it too much but it's kind of hard not to when I'm gasping for breath at the least little bit of exertion. Some days I can almost feel my body starting to shut down. Other days I feel like I can live forever, but I have to admit that those days are becoming fewer and farther between. I am overwhelmed by all of this. I remember when I was younger and contemplated what I would do if I were in a situation where I had to make a decision just like this. At that time I thought I knew all the answers and knew what I would do. Now that I am at that crossroads, the answers are not so clear.
If I had a choice in all this, I'd choose for none of this to have happened. I admit that most days I don't even know what to pray for. In order to even have a transplant, someone else would have to die. I cannot pray for that on the best of days. I, for one, know without a doubt where I am going when I leave this earth. I cannot say the same for the person who would be the donor. I have been through so much medically in my lifetime that I am all too aware of how difficult it would be on me and others if I were to take the transplant route and I'm not sure I really want to go through all that given the time I would gain. At what cost? - emotionally, monetarily, physically, relationally, etc. The costs are so high. I am also not a quitter. I am not ready to let this disease win without fighting it with all that I have. If my going through with it all will help them find answers to help someone else down the road, then who am I not to let them do that? It's all so confusing.
Anyway, I know a lot of you have been asking how things went and believe me, as long as this blog is, it really is the short version. There is soooo much more involved that I didn't even address. These were the main issues though. I am glad that I get a little break from it and don't have to decide one way or another until after the holidays. I'm looking forward to enjoying the decorations and hub bub coming up and just taking it all in. I can't do too much myself, but at least my mind is still intact to be able to supervise for what could be the last time. And y'all know I'm still pretty good at that.
I have been blessed in my life and I have no regrets. I wasn't supposed to live after I gave birth to Dan and yet here I am 31 years later and still going relatively strong. I have outlived the age my mother was when she died and that has been a lifelong answer to prayer. My prayer now is that when my time is up, that I get to go peacefully, preferably in my sleep and that I won't have to be a big burden on anyone for my everyday care - meaning I don't want anyone to have to change diapers on me. I know that sounds stupid, but hey, it's how I feel.
If you take anything away from all this, please take care of your bodies and take time to savor every moment of your life - good times and bad. While what I have is not due to any choices that I made in life, I realize that if I had taken better care of myself, I might have had a few more options available to me. As hard as all this is, I have to say that there has been a lot of blessings in it too. I truly have had to take time to smell the roses and learned to appreciate all those little moments in life that really do mean so much. Too many people zoom through life not even paying attention until it's too late. I have become a calmer person and much more appreciative of the small things in life. My pain level is not so great that it isn't managed pretty much with medications. There are days when even those don't seem to help much but most days I make it through just fine. I thank God for the doctors and the medications each day. Without them both, I would not be here today. I thank God for the people in my life that make my life even worth living. A lot of them I am only in contact with here on facebook but they still make my heart smile and I love them for that. There's a good chance you're one of them and I thank-you very much. ((hugs))
Please continue to pray and know that each prayer brings me a peace through all of this. Despite the difficult circumstances, I still find reason to smile and even laugh every day. Without those prayers, I wouldn't be able to. I can't tell you what to pray for because I really don't know myself. I guess my best recommendation is that you pray that I stay in God's will and am able to hear His direction, leading me in the way He wants me to go. Of course, please continue to pray for Oliver. While I am pretty good at hiding my illness from everyone else for the short times that I am out of the house, he is stuck here with me day in and day out. It is stressful on him because he can't fix it or make it better. Oh and can you please pray that Publishers Clearing House comes to our house the end of the month? Hey, it's worth a shot... LOL Thanks for everything. Love y'all. <3 <3 <3
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