My Last Post

First of all, I’d like to thank all of you…those with whom I’ve talked to directly and those of you who I have not, but have read posts that have helped and informed me. I have said before I have become a praying warrior for those suffering with EC, since arriving in this forum and that will not change.

To the Marshalls- William and Loretta, as some call them-I called them Mom & Dad-Thank you for everything that you have done for me and my husband. Despite what some may think, I did and still do believe Pittsburgh was my divine destination. You have also taught me something I would not have learned otherwise and feel I will need as my life goes on with my Dad in an advanced stage of Parkinsons, with both my mom and dad having cancer-but survivors-and my husband recovering but in a weakened state- is to pray for and accept the Lord’s will fully in your spirit- knowing that His will may be something that hurts you so deeply. When I became a saved Christian, I was taught that if you prayed for something and it wasn’t delivered, that you failed in your belief and your faith. I know that isn’t true now. I knew it when I walked outside and sat on the steps at Presby near the emergency entrance and surrendered my husband to the Lord. He was gracious and gave him back, but I understand there will be times in my life when it doesn’t go as I would wish. Your encouragement and time spent on the phone was deeply appreciated-more than you will ever actually know.

Cindy-I know you called several times and tried to connect with me. I was so weary-literally up 24/7 and when at Shadyside, calling the SICU every 2 hours and laying down with my eyes closed but not sleeping. I was in a very weakened state and even forgot to eat for a few days until a nurse came out and asked me if I had eaten, as I was sitting on the floor outside of the SICU when the doctors were performing a procedure on Bill and they asked me to step out. So I apologize if I seemed as though I was reluctant to meet you. I was just a physical, emotional and spiritual wreck.

To all of those I may have offended with my remarks regarding Dr. Luketich and Presby-you need to know that the things I reported, I reported with no malice but as warnings to those who may be upset to learn that the greatest surgeon to perform the MIE may not have done so, after you have traveled a good ways. And it’s harder to swallow, finding that out and not having the outcome that was optimal. As I was at Presby for over a month and developed friendships with transplant families whose stints were anywhere from 3-6 months-my comments regarding the nursing care were confirmed by them and I felt like I make realistic observations and reported them. It was absolutely my intent to give other families a “heads up” that you really need to be involved and not be hands off or trusting when your loved one is in a critical state. It is my opinion only, that should this occur, you cannot implicitly trust nursing staff-and I felt in my heart that the report could be lifesaving for another person who I hope, does not find themselves in the situation I was in.

If I had it to do all over again, I would still go to Pittsburgh. The MIE has a lower incidence of pneumonia and mortality and should a pulmonary emergency occur, they are prepared to deal with it-I would only change one thing. I would have requested in advance that Dr. L do the surgery himself. Kudos to Tim Coleman who is Dr. L’s guy on the 7th floor, who worked tirelessly on our behalf to get my husband to a room and out of SICU. Kudos to Trish Roth, a very aggressive respiratory therapist and to “Ricky” the respiratory therapist who on his own-assumes the role of a physical therapist. Dr. Kai invested himself into my husband’s case when he went into respiratory failure. These folks, instruments of and sent by the Lord were key and critical components to his recovery.

I know many were upset by my observations that I posted but I stand by those and hope that my remarks might make something better for someone, somewhere, who travels to Pittsburgh for the MIE. I also still stand by the MIE. It is the only way to go. I’ll say it again, had my husband had the open thoracic type surgery and subsequent respiratory failure-he would not have lived. And so-to end on this topic, I advocate the MIE, I know Presby is equipped to handle pulmonary emergencies-but again-if you are uncomfortable with another person performing this procedure on you or your loved one even under the supervision of Dr. L-please talk to the doctor about it in advance. I pray any of you heading for Pittsburgh for the MIE have the 6 or 7 day in and a relaxed time out at family housing. They offer lots of free opportunities to do fun stuff like attend baseball games, visit the conservatory and many other things.

And for those again who were upset at my remarks, or thought them a discouragement to others, I apologize-that was definitely NOT my intent. My intentions have always been honorable and designed to help others.

I have met/chatted thru email with some folks who have lost their husbands. They have my contact information. But their circumstances have hit me very hard because I was them-I know how they feel. I was ready to live what they are living and even called my mom at home without letting the cat out of the bag (she was hysterical enough because she couldn’t be there) and sort of indicated that I might need them to make some “arrangements” at home, as we didn’t have burial plots and my husband was too scared to address it before we left. I feel their pain very deeply and pray for them often…think about them often….my heart breaks every time my thoughts turn towards them and often find myself at work and in tears and I can’t control it.

Even though many people said to me “I’m sorry you’re alone up here…” I replied that I was in fact, not alone. The Lord did comfort me and allow me the superhuman strength to do what I did although at times, I was weak. I talked to Mrs. Loretta on the phone one night and she thought I didn’t want to talk to her but I had fallen asleep on the phone. I’m sorry Mrs. Loretta-I just passed out and didn’t want to be rude and tell you I was already half-sleeping.

Brendon’s death has taken me below the waterline. When I met Susie, it was really like I had known her all my life. I feel exactly what she feels and am devastated. I really wish so much that I lived in her neighborhood so I could be with her right now and tomorrow and the day after that. But we’re in different states and I’m sort of helpless to help...even though I know I will remain connected to her forever. I know the Lord called Brendon home, but I have a difficult time accepting His will and simultaneously being anything close to happy or positive about it. I told the Lord if you take my husband, I will accept it-I will not hate you or resent or be mad at you and will continue to serve you the best I can-but please don’t expect me to NOT be devastated and sad to the depths. And this is how Brendon’s death has affected me and knowing what Susie is going through, as others have here-have become too much for me. I simply can’t come to this forum for a while or maybe anymore.

In my job, I deal with angry people, in my life I deal with sorrow and I can’t take it on here anymore for now. It’s a self preservation decision. I do feel OK with everything I’ve said, although it hasn’t been much and again I hope it helps somebody…and for the last time time-I apologize to those who feel it was discouraging to others-or for those who may have been discouraged by my remarks-I hope this last post sets the record straight. Thank you all for helping me. All of you will be in my prayers. May God Bless you and keep you one and all.