I really am glad to be out of the hospital and back in familiar surroundings. There is just something about being at home that makes things seem like they'll just be alright. As for coming home, it was with mixed feelings. The good news is that the pneumonia is responding to the antibiotics so the immediate crisis seems to be resolving. That being said, the Pulmonary Fibrosis took another major blow and I have declined rapidly.
While in the hospital, I went through all kinds of tests and evaluations. The reason I got to go home yesterday is because there is absolutely nothing they can do to help me. My pulmonary function tests are showing that my lungs are only working at 27% and the pulmonary hypertension has now been graded at severe. I am moving into Cor Pulmonale which is the last stage - right sided heart failure. As for now, my heart is still beating strong but it is under great strain. They had physical therapy come in yesterday for an evaluation and I only walked about 25 feet and my oxygen saturation level dropped to 50. It's not supposed to go below 90 before it stresses your organs. They said there is nothing they can do to help that get better. Even that drug that I was on for a couple of days won't help at this point. The big kahuna lung doctor said I'm just too severe and it won't help. They're even going to wean me off the prednisone because it's not helping at all anymore either.
Basically he told me to get my ducks in a row. I will keep having these flare ups and events until I don't recover from one. He was like, "will you recover from this one? I don't know, but it won't be long before you just don't. I hate to be the bearer of bad news but I feel you want honesty." He was right, I do want honesty. It wasn't anything that I wasn't already aware of and kind of figured was happening - after all, I'm living in this ol' body - but it was still difficult to hear.
The hardest part was talking to Oliver and the kids about it. I know the day will come when Oliver will come in the room and I'll just be gone or be literally suffocating to death. I've walked in both shoes and know how difficult that is. I have also been on the receiving end of a bad news phone call. I told them all that I hate all this and I hate being the one that will cause them that pain. There is nothing I can do to stop this or keep it from happening. I'm fighting with all I have and not giving up by any means but it won't be much longer now. I just know and now the docs have confirmed it.
I'm not writing this to make you all sad or to make you feel sorry for me. Quite the opposite. I'm telling you so that you won't be shocked when my posts just fail to exist one day. I know I'm going to a better place and that I will just be going on a new journey. I have loved living life and I intend to continue to do so until that last breath. I love to laugh and I plan on doing just that. It's harder for me to get out and about but I'm still going to try. I have never been a spectator in life and I don't plan on taking that role any more than I have to now.
So laugh with me and bear with me when I find the humor in seemingly serious subjects. Dying is not funny but there really is so much to laugh at it's face with and I intend to do just that. Thank-you for being on this crazy ride of life with me. Each of you has a special place in my heart and I am far richer for having had you in it. I'm only getting this stuff out because I don't know how much more time I have. Hoping and praying for awhile yet but don't want to be caught moving on without having said it. I love each of you in very special ways - of course, some more than others. I hope that you continue to enjoy every moment of your life and please don't take it all so seriously. Laugh, love, kick someone in the shins, but do it with passion and without abandon.
As a personal favor, I'm going to ask you to please promote organ donation. It wasn't an option for me but it still is for so many. I have friends who are waiting right now on organs so that their quest in life can continue. I also ask that you please promote Pulmonary Fibrosis awareness. More funding has to be raised so that treatments and ultimately a cure can be found. I have had doctors tell me this is the absolute worst diagnosis that they ever have to give. I can't disagree. This suffocating to death is awful. It kills about 40 thousand people a year - the same that die from breast cancer. Yet you've heard of breast cancer, right? More will be diagnosed this year than ever before with pulmonary fibrosis.
I hope and pray that this doesn't touch you or your family. Unfortunately it touched us. I am so grateful that I have my faith in God and know that I am not walking this journey on my own. It's hard on those around me. They don't know what to say or do... I understand that. I understand that most of you don't know what to say except to tell me to hang in there - and I am, the best that I know how to. This isn't good-bye. Actually I hate good-byes anyway. I just wanted y'all to know that the day will be coming, probably soon, when my posts will no longer show up. At last check, facebook wasn't available in heaven. I'm ok, I'm ready when the time comes and now I want to concentrate on living that time I have left and not letting PF steal my thunder. Have a great day and let's go have some fun!
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