My Last Post
DanaM
Member Posts: 29
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.
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.
0
Comments
-
Dana,
I am at work right
Dana,
I am at work right now, so i can not respond the way I would truely like to. YOU have touched me so deeply in your messages to me and beliefs. Would you please send me a message with an e-mail address so I can keep in touch, I hate to see you leave here, but I do understand. With my dad being a stage 4 I know what is comming our way and it is so sad for me also to see this happen to others, especially those like Susie with her husband being so young. It is so hard to understand why this has to happen, and although I never met or talked to her, I cried when I read the message from you. Please keep in touch with me, and as you have kept me in your prayers, I keep you and your family in mine.
GOD bless you always
chrissie0 -
Dana
You have been under so much stress, it is understandable that you feel you need a break. I too haven't been checking this week because I was getting so depressed reading the posts lately. Unfortunately, the stark reality is that EC is just an awful cancer to be associated with and we all have to cope in the best way we can. I was also alone when my husband had his surgery, and I underestimated the feeling of isolation and helplessness I felt being so far away from home and family. Although my husbands complication was minor, i was totally freaked out when he was discharged to the hotel for a week worried that something awful would happen when we were so far from home. I don't think I slept more than 2 or 3 hrs a night the first 3 weeks post op.
One last thing, I for one appreciated your honesty with your experiences and I truly believe that the good and the bad need to be shared for others so they can **** and make their own informed decisions. Since so few people are diagnosed with EC, we all need a site such as this one that we can share the good, bad, successes and unfortunately, losses. I hope time will help you heal both mentally and physically (you are exhausted!) and you will come back and share your husbands progress.
All my best to you and your husband, Kim0 -
Thanks for your inputAlaska_Kim said:Dana
You have been under so much stress, it is understandable that you feel you need a break. I too haven't been checking this week because I was getting so depressed reading the posts lately. Unfortunately, the stark reality is that EC is just an awful cancer to be associated with and we all have to cope in the best way we can. I was also alone when my husband had his surgery, and I underestimated the feeling of isolation and helplessness I felt being so far away from home and family. Although my husbands complication was minor, i was totally freaked out when he was discharged to the hotel for a week worried that something awful would happen when we were so far from home. I don't think I slept more than 2 or 3 hrs a night the first 3 weeks post op.
One last thing, I for one appreciated your honesty with your experiences and I truly believe that the good and the bad need to be shared for others so they can **** and make their own informed decisions. Since so few people are diagnosed with EC, we all need a site such as this one that we can share the good, bad, successes and unfortunately, losses. I hope time will help you heal both mentally and physically (you are exhausted!) and you will come back and share your husbands progress.
All my best to you and your husband, Kim
Dear Dana,
You have been thru a wringer of emotions and sheer terror. I think you did your best to honestly give a point of view as a family member witnessing what you and Bill were going thru. Your continued faith in God is a beautiful witness to your belief in a higher Power and you could do no more than put Bill in His hands. I think many of us are so upset over Brendon's passing and your Bill's almost passing and both being young, that this just is hard to bear for everyone, we all so wanted Susie and Brendon to have a better outcome. We wanted more for you and just hope and pray now that Bill will go on to a wonderful complete recovery. Thanks again for standing up and stating your experience. Many hugs and prayers will be with you. take care,
Donna700 -
Many Many Hugs
Hi Dana
I am sending you many heartfelt hugs to you. We love you here, and totally understand what you are saying. Please do not stay away for too long. We need you and your cancer experiences here. I will be thinking of you and praying for you daily.
Tina in Va0 -
Your kind words & thoughts have lifted me up
Tina, Donna, Alaska Kim, Chrissbass, You have my heartfelt thank yous. You have lifted my spirit today, more than you will ever know. God Bless all of You..and every single person on this site suffering from the effects of this disease. May the Lord continue to keep you all. Chrissiebass-At times, I am technologically challenged and could not get your name into the "TO" spot in my CSN email. Please send me a quik email to the CSN account so I can reply with my contact information. I for sure will provide you with my email and phone number. I'd be honored to continue to talk with you, whether it be by phone or email. Anyone who needs to talk to me, or has any questions that they feel I might be able to help with can count on getting a reply email with my contact information. And even if you don't have a question and would like my private email, should you need some special prayers, please allow me to pray those specific concerns for you. I know the power of prayer, count on it, live by it, know that in my own power I am weak. But I will not hesitate to draw on power, where I know it exists on your behalf. I mean that from the bottom of my heart. Luv u all-
Your sister in Christ,
Dana0 -
YOU ARE AN AMAZING HUMAN BEING AND SUPPORTIVE WIFEDanaM said:Your kind words & thoughts have lifted me up
Tina, Donna, Alaska Kim, Chrissbass, You have my heartfelt thank yous. You have lifted my spirit today, more than you will ever know. God Bless all of You..and every single person on this site suffering from the effects of this disease. May the Lord continue to keep you all. Chrissiebass-At times, I am technologically challenged and could not get your name into the "TO" spot in my CSN email. Please send me a quik email to the CSN account so I can reply with my contact information. I for sure will provide you with my email and phone number. I'd be honored to continue to talk with you, whether it be by phone or email. Anyone who needs to talk to me, or has any questions that they feel I might be able to help with can count on getting a reply email with my contact information. And even if you don't have a question and would like my private email, should you need some special prayers, please allow me to pray those specific concerns for you. I know the power of prayer, count on it, live by it, know that in my own power I am weak. But I will not hesitate to draw on power, where I know it exists on your behalf. I mean that from the bottom of my heart. Luv u all-
Your sister in Christ,
Dana
My dear Dana:
Why would you think you have offended anyone?. Everyone on this site knows
the one and best way to go is the MIE. You support the MIE. What not every
one knows is what it is like to deal on a day to day with the nurses there.
I lost my beloved husband, Gaspar, of twenty years.We had a magical relation-
ship, always together, always happy, opened and owned a business together,we
had 24 hours of love everyday. We have two girls. Iam devastated and I try very
hard, work a lot,but the pain and the suffering is endless.
I think it is fair that people know what they need to anticipate before going.
It is not a fairytale, and some have success, but its necessary to know that
others wont have the same luck. My husband died of complications, and I have
no doubt in my heart it was negligence. MERCY HOSPITAL IS HORRIBLE, THE NURSES
ARE NON COMPETENT. As I spoke to one who was 20, I asked her how come you care
an RN at 20?.Its a fast course we take of hands on and allows us to work as RN.
I do not get it. the people in ICU were horrible and it made them upset that I
was with my husband, as they joined together to eat and laugh in the nurse station
at night. I WILL REPORT THIS AS MANY TIMES AS NEEDED, BECAUSE I DONOT want anyone
to go through this. We are here to help and warn each other. Your posts are intelligent
and your words are wise.
Ilove you Dana, and I pray for Bill everday. I wish I had my Gaspar here, he was 52.
His original feeding tube was deffective. They took him to change it, the doctor told
me he would change it, they did it 3 times in radiology with no success and then called the
doctor, he was put on antibiotics after because of all that went on. my husband told me
the ladies in radiology were screaming at each other in a non elegant way at all. Finally
doctor came and did it, but the doctor never told me he told me all was ok, God knows how
many times they puncture his intestine. He dies of peritonitis caused by leaks of the intestine from the feeding tube. The peritonitis was so big that caused a septic shock. Just thinking of all they put him through affects me soooo much, my heart aches, this is
unacceptable, it could have prevented, it hurts soooo much DANA.
Many Blessings and one needs to be honest and express his experience to help others, this
is not a trip to Disney World, and everyone is different.
Maria V.0
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