Update, Billy & Dana, Post MIE
I’d like to apologize for no recent news or updates. The surgery went well, as I posted in my reply “Billy & Dana’s Prayers Answered.” The Lord had one additional trial by fire in mind. My husband was in the surgical ICU on the day following the surgery and I spent the day there with him while they were waiting for a room on the thoracic surgery floor. I went home to shower with plans to return in an hour or so. Billy called my cell phone and gave me his room number but he was talking in a manner that suggested that he was confused and somewhat panicked. He asked me where I was and I told him I was on the shuttle and should be there within ten minutes. My heart was rising into my throat.
When I met him in the room, he was in apparent distress and the nurse told me that when she went into his room, he was standing up with all his drains pulling and asking to go back to the ICU. He told her that something was wrong with “their program on this floor” and demanded to be moved. This is NOT my husband. The nurse blamed it on “ICU psychosis” and told me he was just disgruntled because they couldn’t be there all the time like they were downstairs.
I begged to disagree with her and spent the next several hours trying to comfort him and using my own body to keep him down on the bed. Finally, I demanded to see the doctor who was supervising the unit. He arrived and I told him that he needed to go back downstairs that something was really wrong. I know my husband. He leaned back with his hand on his chin and said, “You think?” I informed him that I didn’t have a medical degree, but medical experience as a volunteer medic and stated, “Yes, I think. I’ve been up here tending to him for the last 8 hours and he was rapidly deteriorating. The nurse who was assigned to my husband told me that she was not experienced and called a more seasoned nurse to assist her as he had become combative. A blood gas was taken. The blood was dark which suggested high Co2 levels which were confirmed shortly thereafter
Once back in ICU, he continued to digress. When his oxygen levels deteriorated quickly, he crashed and I was sent out of the room in tears. The SICU doctor, an instrument of the Lord, Dr. Kai, came out to see me and told me that they had turned him over and his oxygen levels improved and he ordered a special bed for my husband that would assist with positioning him to help him breathe but I was hardly prepared for what I saw. While I was waiting for the bed to arrive, one of the doctor’s surgical interns came out to tell me that my husband did respond to being repositioned but that wouldn’t last. Bill was placed inside of a “rotoprone” bed. If you google the word, you will see a picture of what looks like a blue foam, completely enclosed, MRI machine. Once he was placed inside of the bed, I couldn’t even touch him anymore and he was on a ventilator. I slept next to him in the ICU for three days, talking to him and reading to him.
I hadn’t seen his surgeon since the procedure. He did come into the ICU once and told me verbatim, “his lungs are in pretty bad shape, if any other system fails in his body, we won’t do anything further for him.” His surgical interns who were standing behind him, looked pained as they watched the expression on my face. Most of them had been very kind to me and encouraged me often. One of the interns returned to check in with me and I asked him if he would ask my surgeon to come back down to talk to me, but I never saw him again.
At this particular point, I hadn’t eaten in days, nor slept. I read a posting regarding the nursing staff at Mercy in Pittsburg. I must say in my experience at Presby, I saw the same thing. Thinking I might have high expectations, I came to know quite a few families whose loved ones had been in the hospital for weeks if not months and their experiences were identical to mine. Being there basically 24/7, for about 4 ½ weeks gave me the opportunity to really evaluate the nursing staff there. There are a few shining stars but I did observe nurses who seemed to be irritated with the task of taking care of their patients and did see a lot of what I would call neglect, i.e. poor tracheotomy care, reluctance to tend to a patients hygiene needs…my husband had such a high fever at one point and one of the “rock star” nurses, Nikki, was keeping my husband packed in ice bags while he was in a rotoprone bed. He was extremely hot and when I requested that one of his nurses on another shift put some ice on his body, she said he really didn’t need it and when I began to fill the bags myself, she offered to help. I could go on here, but I think the reader gets the general idea.
I took on the hourly task of suctioning my husband’s trach myself, applying cool cloths to his body, keeping salve on his lips and medicine on the blisters he was developing from the bed. I notified them when the IV medications became occluded by the machines and settled into the tasks of restarting them myself. I constantly repositioned him when he slid down into a position of discomfort. It was a full time job and watched other patients sadly who did not have a family member to pull a “security detail” get pushed to the back burner. In the ICU, there is one nurse to every 2 patients. If one patient is having a difficult time, the other suffers. On the regular floors, it is worse, with the ratio being 1 nurse to 5 patients.
At this point, on the verge of collapsing, I walked outside and told God that I needed to turn this situation over to Him completely. I asked for His will be done, I told Him that I wouldn’t be mad or angry with Him, although I would be devastated if He chose to take him from me. I asked that if it was His will that my husband would not survive this, to please take him and not let him suffer anymore and if it was His will that he survive, to begin healing him. It was the hardest, saddest thing I have ever had to do in my life.
The next day, I began to see improvements. To make a very long story, that has been long enough already, short, it was still up and down, a seemingly new problem every day. I was informed that my husband would not leave the hospital to go home, that he would need to be discharged to a rehab center to recuperate. I wouldn’t receive that because I know my husband would benefit from being in his own home and there wasn’t anything they were going to do for him that I couldn’t do myself. I didn’t want a stranger doing a job, taking care of him, I wanted to take care of him myself.
And so we are home and he is getting stronger as each day passes, although we are far from the point that I can leave him alone. He is walking around the house, but very weak. The Lord still has his hand upon him and on me as well because my stamina could not be coming from anywhere else but above.
There were 2 ½ positives about the trip to Pittsburg. The half was that there was so little trauma with the MIE. I don’t know if Bill would have survived pneumonia with an open thoracic procedure. But I don’t know if he would have encountered the problem in Baltimore with the more invasive procedure. The pneumonia was caused because the naso-gastric tube was removed prematurely and because the stomach suffered a trauma because of the surgery, the juncture where the stomach joins the small intestine was swollen. Therefore, the stomach fluid could not drain normally, and no drain was in place, therefore he aspirated stomach contents into his lungs which inflicted a great injury.
Bill also had a leak and I couldn’t help reflect on our surgeon’s words, “We were a little longer than usual” he told me after the surgery, “Wednesday is our teaching day.” I really should have had that point clarified prior to surgery that I would not consent to have anyone other than the surgeon I chose, to do anything or be involved in my husband’s procedure in any way whatsoever. Our general discharge papers revealed every procedure that was done to my husband and who actually performed it. It appears that our surgeon, Dr. Luketich allowed one of his interns to do the actual surgery. I was never told this in advance and thought it proper that someone traveling a good distance to see a particular surgeon would be informed if that surgeon would not be the one who actually performed it. And so, I digress. My husband is weak but alive and that’s the only thing that matters at this point. Anyone considering traveling to Pittsburg for this procedure, please take this page from my book and ask Luketich who will be performing the surgery. I can’t help but think if he had actually done it, things might be different. I didn’t go there for someone to “train” on my husband. The number one positive was meeting Susie and Brendon, as the Lord would have it, were briefly assigned to a room directly across the hall from us. We were so happy to meet them in person and will be lifelong friends. And the final positive was getting to leave and put it all in our rear-view mirror. Glory Be to God for giving my husband back to me. I give Him all the praise.
Comments
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Hi Dana
You have had a heck
Hi Dana
You have had a heck of a time, so hoping that now the healing can begin, your love for your husband just shines through. I am going to suggest something that I am sure Billy would say to you, if he had the strength, please look after yourself, you will be no good to anybody if you don't. There must be a family member or very dear friend who can come in even for an hour just to let you have a breather. Take care and you and Billy are in my prayers.
Ann0 -
Glad you made it home.
Away from the hospital and at home will help your Bill get better. It is still a bumpy, journey so don't get impatient, but having his home and you with him will give him strength. I have debated writing the risk management supervisor of the hospital network where my husband had his surgery. Then, again, I don't want to revisit all that occurred. I was not impressed with ICU care. As you said, there were shining stars, but the other ones were burned out. Most of the ICU nurses seemed delighted to work with the comatose, sedated patients. Ivor Lewis patients require attentive detail. They have to move. They are so wound up in one tube or another, they can't take care of themselves. The tubes are so important and anything you try to do to help the patient is affected by taking care of the drainage tubes. This is in a hospital in another state that wins awards, awards for patient care and is one of those touted top 100 hospitals. If that be the case, what is the situation in the unranked hospitals. Again, if I had not stayed by my husband's side as long as they would let me, the outcome might not have been as good. I have no complaints about the physicians, but their good work was almost undone by some less than motivated people. It was a wonder to me that in ICU with the nurse having only two patients, that I would only see a nurse about every hour or so--said they were doing records--and that it took, timed, 30 minutes to respond to a call. I get upset thinking about some of the negligences. So, I am so thankful your Bill survived. Oh, my! Oh, my! I don't see how you took it all. (I might say that hospitals are cutting nursing staff in large numbers. The shining star nurses are worked beyond their capacity. I feel that many of the problems came from under-staffing. I'm just thankful there were some good staff working as well.)0 -
I just had to say......
Dana,
Your post brought me to literal tears at the hardship that you guys just went through and I was overwhelmed at the faith in God that you displayed throughout the ordeal. You and Billy have been in my prayers the last few weeks and the fact that Billy's now home is a testament to His providence. I pray that I don't have to experience what Billy did when I undergo my surgery but if per chance something happens I pray that my loving wife can remain as strong as you.
Reading your post a scripture came to mind out of James 1:2-4:
"Consider it all joy, my brethern, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have it's perfect result, that you may be perfect and complete, lacking in nothing."
Still praying for you
Michael Daniels
Brandon, Florida0 -
your story could train nursing & other med professionals!
Dana---thanks for sharing your story---there is SO much info in your post--that it could be used for training purposes! I am not a nurse or a doctor but a physical therapist whose dad is fighting EC. He had his treatment at DUke---& although I was skeptical he got amazing care all the way through---especially nursing care (which I think is quite a challenge due to so many budget cuts). Your stamina, faith & love for your husband (& Gods hand) saved him! Wow-what a testament. But it does pain me---what happens to those who doesn't have that family member as a spokesperson?
My Prayers for his continued gains in strength---he has been through a lot--it will take a while. Keep us posted---we're all friends on this site! God Bless!
Kim0 -
Thank you for sharing
Dana,
You and Bill have really been through a terrible time over the last few weeks. I will be saying prayers that now that Bill is home things improve quickly. I think there are some very valuable lessons to be learned from your experience. Thank You for sharing your lessons with people via this forum.
It is interesting that just this afternoon I was talking with some friends who were about to have surgery. My words to them were, “When you are in the hospital you need to have someone with you to act as an advocate to insure you are safe while you are there.”
When I was in the hospital for my Ivor Lewis surgery, I contracted an infection in both of my surgical incisions. It resulted in three additional days in the hospital and they sent me home with an open six inch incision that took four months to heal. My experience was similar to yours, (although certainly not as life threatening), in that once I was on a regular surgical floor nurses would often take a significant amount of time to answer a call. My wife learned how to restart my IV, untangle my tubes, and help me to the bathroom.
Since I was in a teaching hospital one of the conversations I had with my surgeon was “I want you to assure me that you will perform the actual IL procedure”. In the end I am not sure how one ever guarantees what happens in the operating room. When you enter a teaching hospital you have to sign a document that states you understand it is a teaching hospital and certain procedures will be performed my medical personnel in training. I guess we all hope it would not be critical surgery.
I will say this, whenever there was something critical to be done:
- My swallow test
- Removal of my chest tubes
- Re-opening my incision due to infection
- Discussion of the pathology reports
My surgeon was there. It sounds like your experience was not as positive. It is interesting, and disconcerting that different people can have such a different experience with the same hospital and medical team.
In any case I am glad you and Bill are home and he is improving. I hope you are getting assistance from family and friends and you are giving yourself some TLC. It sounds like you need some time to recuperate as much as Bill does.
Again, Thank You for sharing.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED
Life may not be the party we hoped for, but while we are here we might as well dance!0 -
WE EXPERIENCED THE SAME
On my beloved husband, now dead, the surgery was performed by 5 and the intervention of Dr. Luketich, the surgeon we traveled to see, was very minimal. They also perforated my husbands pericardium, and he had that kind of confusion, went to the OR to remove the efussion of the pericardium. Very sad!!!, Got back to Miami and he passed away from peritonitis caused by the feeding tube. Thank God Bill is still here and overcame all this. I can totally relate to every traumatic experience you say on your text. I lost my husband at 52, and me and my girls are devastated. God Bless you and Bill.0 -
just so sorry DanaVIC123 said:WE EXPERIENCED THE SAME
On my beloved husband, now dead, the surgery was performed by 5 and the intervention of Dr. Luketich, the surgeon we traveled to see, was very minimal. They also perforated my husbands pericardium, and he had that kind of confusion, went to the OR to remove the efussion of the pericardium. Very sad!!!, Got back to Miami and he passed away from peritonitis caused by the feeding tube. Thank God Bill is still here and overcame all this. I can totally relate to every traumatic experience you say on your text. I lost my husband at 52, and me and my girls are devastated. God Bless you and Bill.
Dana,
I am just horrified at what you have gone thru with Billy. I know the Ivor Lewis has a lot of cons against it but for having the more simple surgery you and your husband were put thru hell because of poor nursing care and poor follow up by the drs. My surgeon saw me and spoke to me every day and this was during a very bad snowstorm. Nurses can be a problem but in my 2 wks I encountered about 3 who were not good. To think your husband was begging for help and saying something is wrong and nobody followed up and you are holding him down, just is astounding. I worked in hospitals never heard of nobody listening to what you all were trying to tell them. I hope Billy does well now that he is home. I did get my surgery the Ivor Lewis in Baltimore at St. Joseph's and got excellent care. I did have trouble in the SICU and felt better in the thoracic unit where I got wonderful care but I did not have complications. I got chest x-rays every day 4 am a lot of times and bloodwork around the same time and felt like any concern I had was addressed. My prayers are with you and Billy and my hopes are that it is all smooth sailing from this point on.
take care,
Donna700 -
Thank you all
Thank God for all of you and your prayers. This site not only offered a lot of information, it also offered comfort and inspiration and the comfort and inspiration continue.
Ann, Thank you for that thought and your concern. Lord knows, I have heard that often and since we have been home, there have been more opportunities to take a breather. My mom lives 2 blocks away and has been here helping since we got home. She was hysterical the entire time we were in Pittsburg, because I insisted she remain home because my dad has Parkinsons and I didn’t want her to leave him alone. They sit with him if I need to shop and have been bringing us meals that are post-esophagectomy friendly. My mom and dad took a lot off of my plate by tending to our home, animals and bills while we were gone. Our neighbors have been mowing the grass, which would have been me under these circumstances and has been a huge help.
BMGky, You are so right, good post critical care can be as important as the actual surgery and good work can be undone by a careless few. I can feel that you absolutely understand the experience. I believe you had asked me before if I minded sharing the pathology report. If it wasn’t you, I apologize. Billy did have a resection or removal of his tumor before the MIE. I actually asked on the day we were released to go home because none of that mattered to me in the state he was in. The only thing they found in the removed tissue was adenocarcinoma in SITU, which I have to assume was the high grade dysplasia. No nodal involvement and the adjacent organs looked healthy. Like you, I don’t want to revisit the whole thing, but when the opportunity presents itself, I intend to write a well meaning letter to the executive administrative staffing at Presby, in the hopes that it makes a difference for someone else in the future as it relates to nursing care.
Michael Daniels,
I will hold you in prayer. I held onto this often while camping at Presby, Romans 8:28-And we know that all things work together for good to those who love God, to those who are called according to His purpose. I will further pray for your wife that she shall have peace like a river, regardless of the circumstance. I feel in my spirit that you will do well. Somewhere in Hebrews, I think, it says it is impossible to please God without faith. I can’t tell you how difficult it truly was to say to God that I’m trusting you with the thing I value most in this earthly realm and mean it and to be at peace with His decision, whatever that be. He proved faithful to me when I trusted Him with all my heart and He will prove faithful to you as well. They say a person is only as good as his word-that’s why I held onto Romans 8:28, because He is without spot or wrinkle and perfect-therefore His Word is a guarantee that you can find nowhere else in this world.
Kim,
I can’t begin to tell you how much that bothered me…seeing patients with little to no visitation. There was at least one family there who wasn’t physically present in the ICU, but gathered as a family in the waiting room and when I observed something troubling, I would seek them out about it. It has always been a dream of mine to create a non-profit organization, “We are the Branches” that would offer a bit pull advocate to patients that may not have a family member to watch over them, to drive them to and from a procedure, mow their lawns, take care of their pets, pick up prescriptions, etc. People need someone who cares about them, to wait for them while they are being operated on, to pray for them and take care of those everyday things that prove very problematic if you don’t have anyone. I often ask the Lord to provide a way for me to make that dream come true. Nothing would make me happier than doing that kind of work.
Paul,
Thank you for sharing as well. I remember getting a paper in my packet that said, “Dr. Luketich is a very busy surgeon and may not be available to perform your procedure.” I gave it no thought really. I’m sure it’s a legal protection designed to allow his residents to train under his supervision and I realize that new surgeons have to learn somehow, but they need to let the patient make an informed decision regarding this issue. It almost seems like a bait and switch. I just hope by sharing what happened, someone else who goes can ask that question in advance of their procedure.
Vic123,
I read your post and was literally in tears reading your words. It sounds like an identical experience to my own, excepting your loss. Dr. Luketich actually had minimal involvement as well. He is listed as performing the last endoscope and drain manipulation right before we left the hospital. I will be lifting you and your girls up to the Lord. I am so sorry-my heart bleeds for you because I had come to a place where I was willing to accept my husband’s death and the feeling is pretty close to the actual thing. I will be praying for you daily, for a peace to overwhelm you and your family that can only come from one place. I wish I could hug you in person-but please accept these electronic ones. oxoxoxo
Donna,
Thank you for your kind words. True enough, even though most folks would opt for an MIE, if available, I did question myself on how things would have turned out at the University of MD, where we were originally scheduled. You can have an MIE and go thru fire, or an open thoracic/Ivor Lewis and come out great, with great care. One has to believe that no matter where you end up or what procedure you wind up having, that there is no doubt that the universe and our personal circumstances are unfolding as it should. If the Lord’s hand is on it, you could have your surgery in a ditch on the side of the road and His will; will be done regardless. I also knew that if I lost my husband and as I’ve said, I was prepared for that, that I knew I would not understand why at the time, but would perhaps later on and took comfort in the fact that if it happened, he would shed his earthly, burdensome, shell and move to a Higher place where no pain exists and the Lord reigns supreme and soverveign.
Love u all.0 -
You guys have me a littleDanaM said:Thank you all
Thank God for all of you and your prayers. This site not only offered a lot of information, it also offered comfort and inspiration and the comfort and inspiration continue.
Ann, Thank you for that thought and your concern. Lord knows, I have heard that often and since we have been home, there have been more opportunities to take a breather. My mom lives 2 blocks away and has been here helping since we got home. She was hysterical the entire time we were in Pittsburg, because I insisted she remain home because my dad has Parkinsons and I didn’t want her to leave him alone. They sit with him if I need to shop and have been bringing us meals that are post-esophagectomy friendly. My mom and dad took a lot off of my plate by tending to our home, animals and bills while we were gone. Our neighbors have been mowing the grass, which would have been me under these circumstances and has been a huge help.
BMGky, You are so right, good post critical care can be as important as the actual surgery and good work can be undone by a careless few. I can feel that you absolutely understand the experience. I believe you had asked me before if I minded sharing the pathology report. If it wasn’t you, I apologize. Billy did have a resection or removal of his tumor before the MIE. I actually asked on the day we were released to go home because none of that mattered to me in the state he was in. The only thing they found in the removed tissue was adenocarcinoma in SITU, which I have to assume was the high grade dysplasia. No nodal involvement and the adjacent organs looked healthy. Like you, I don’t want to revisit the whole thing, but when the opportunity presents itself, I intend to write a well meaning letter to the executive administrative staffing at Presby, in the hopes that it makes a difference for someone else in the future as it relates to nursing care.
Michael Daniels,
I will hold you in prayer. I held onto this often while camping at Presby, Romans 8:28-And we know that all things work together for good to those who love God, to those who are called according to His purpose. I will further pray for your wife that she shall have peace like a river, regardless of the circumstance. I feel in my spirit that you will do well. Somewhere in Hebrews, I think, it says it is impossible to please God without faith. I can’t tell you how difficult it truly was to say to God that I’m trusting you with the thing I value most in this earthly realm and mean it and to be at peace with His decision, whatever that be. He proved faithful to me when I trusted Him with all my heart and He will prove faithful to you as well. They say a person is only as good as his word-that’s why I held onto Romans 8:28, because He is without spot or wrinkle and perfect-therefore His Word is a guarantee that you can find nowhere else in this world.
Kim,
I can’t begin to tell you how much that bothered me…seeing patients with little to no visitation. There was at least one family there who wasn’t physically present in the ICU, but gathered as a family in the waiting room and when I observed something troubling, I would seek them out about it. It has always been a dream of mine to create a non-profit organization, “We are the Branches” that would offer a bit pull advocate to patients that may not have a family member to watch over them, to drive them to and from a procedure, mow their lawns, take care of their pets, pick up prescriptions, etc. People need someone who cares about them, to wait for them while they are being operated on, to pray for them and take care of those everyday things that prove very problematic if you don’t have anyone. I often ask the Lord to provide a way for me to make that dream come true. Nothing would make me happier than doing that kind of work.
Paul,
Thank you for sharing as well. I remember getting a paper in my packet that said, “Dr. Luketich is a very busy surgeon and may not be available to perform your procedure.” I gave it no thought really. I’m sure it’s a legal protection designed to allow his residents to train under his supervision and I realize that new surgeons have to learn somehow, but they need to let the patient make an informed decision regarding this issue. It almost seems like a bait and switch. I just hope by sharing what happened, someone else who goes can ask that question in advance of their procedure.
Vic123,
I read your post and was literally in tears reading your words. It sounds like an identical experience to my own, excepting your loss. Dr. Luketich actually had minimal involvement as well. He is listed as performing the last endoscope and drain manipulation right before we left the hospital. I will be lifting you and your girls up to the Lord. I am so sorry-my heart bleeds for you because I had come to a place where I was willing to accept my husband’s death and the feeling is pretty close to the actual thing. I will be praying for you daily, for a peace to overwhelm you and your family that can only come from one place. I wish I could hug you in person-but please accept these electronic ones. oxoxoxo
Donna,
Thank you for your kind words. True enough, even though most folks would opt for an MIE, if available, I did question myself on how things would have turned out at the University of MD, where we were originally scheduled. You can have an MIE and go thru fire, or an open thoracic/Ivor Lewis and come out great, with great care. One has to believe that no matter where you end up or what procedure you wind up having, that there is no doubt that the universe and our personal circumstances are unfolding as it should. If the Lord’s hand is on it, you could have your surgery in a ditch on the side of the road and His will; will be done regardless. I also knew that if I lost my husband and as I’ve said, I was prepared for that, that I knew I would not understand why at the time, but would perhaps later on and took comfort in the fact that if it happened, he would shed his earthly, burdensome, shell and move to a Higher place where no pain exists and the Lord reigns supreme and soverveign.
Love u all.
You guys have me a little worried here. I'm scheduled for an MIE in Pittsburgh at the first part of July and from what I'm reading, I'm second guessing it. I have an amazing hospital here with an incredibly kind and caring surgeon who was not comfortable doing the MIE so with the help of the members here, I sought out Dr. Luketich in Pittsburgh and moved it forward. Now after reading these stories, I'm not sure I am making the right decision. Am I better served to have the open IL here with incredible the nursing staff we have or go to Pittsburgh where I'm reading that uncaring nurses and a dirty facility await me for a procedure that may or may not be performed by Dr. Luketich? Please help me. Time is getting close. I've now read two nightmare stories in a week. I did have a good friend who is an RN tell me that maybe I shouldn't do any reading online for the few weeks leading up to the surgery but shoot, I can't stop.0 -
Use my bad for your goodJimboC said:You guys have me a little
You guys have me a little worried here. I'm scheduled for an MIE in Pittsburgh at the first part of July and from what I'm reading, I'm second guessing it. I have an amazing hospital here with an incredibly kind and caring surgeon who was not comfortable doing the MIE so with the help of the members here, I sought out Dr. Luketich in Pittsburgh and moved it forward. Now after reading these stories, I'm not sure I am making the right decision. Am I better served to have the open IL here with incredible the nursing staff we have or go to Pittsburgh where I'm reading that uncaring nurses and a dirty facility await me for a procedure that may or may not be performed by Dr. Luketich? Please help me. Time is getting close. I've now read two nightmare stories in a week. I did have a good friend who is an RN tell me that maybe I shouldn't do any reading online for the few weeks leading up to the surgery but shoot, I can't stop.
Jimbo-
I certainly can’t make this decision for you, but I can say for a fact that the trauma with an MIE is nothing compared to the open thoracic version. As we were discussing (a few families of patients being treated by Dr. Luketich) residents training and such, one family member told me that her mother made it a condition prior to entering Presby for the MIE that Dr. Luketich and he only, was authorized to conduct the procedure on her. You have advance notice of this issue now and I think it would only take a phone call/inquiry to solve that problem.
Secondly, as long as you have someone to watch your back in the hospital, you will be fine. It’s the others that seem to be neglected. At times, like another lady stated, the nurses were a little irritated that I was there so much. If you’re worried about being watched, then something is wrong. As much as they dislike it, if someone is present with you, you will be OK. There were times when on the overnight shift, I knew I had a truly competent and compassionate nurse (his name was Donnie) and I knew he was working three nights and I trusted him. And so, I felt comfortable leaving Billy in his hands. He even called my cell phone to let me know that one of the post-op endoscope procedure time had changed. The doctors didn’t. I also left my cell number everywhere, except the bathroom wall and wrote it on the board when we got to a regular room and instructed any nurse to call with any issues at any time.
After a while, if the wind shifted a degree, they called my cell phone. Of course, that was after I called a hospital administrator and we conferenced, me and the surgical residents and the ICU doc right in the center of the ICU after I blew a gasket. A few good things I can tell you is that Tim Coleman, who oversees Dr. Luketich’s patients on the 7th floor thoracic ward is an outstanding person. In the beginning, when I couldn’t get answers and before we were on the 7th floor, he willingly answered questions that I had, helped push for a room when none were available and in general was a very compassionate person who was truly interested in the welfare of patients. A mover and a shaker. Should you need any respiratory assistance (God willing, you do not) please ask for Trish Roth, who is a respiratory technician-also smart as a whip and very aggressive with getting folks on the road to wellness. I can remember days I never saw a respiratory technician even though Billy was assigned one all day-and Trish Roth came across my husband while she was rounding. She cleaned his trach and took time to remove the sutures holding the trach in place because they were oozing infectious material. After that, she never failed to stop in and check him, on her own nickel because she was concerned. It is acceptable to ask for a specific respiratory therapist. Intelligence and compassion is her forte.
I would strongly suggest a phone call in advance to secure an understanding that Luketich be the only surgeon authorized to perform the procedure. Apparently, it has been done, but I just assumed…… Live and learn. As I probably mentioned before, a lady who had the same procedure right after my husband had the same problems and I would bet, if I were a betting lady that one of the interns performed the procedure as well.
Take heart and don’t fear. You have the opportunity to NOT make the mistakes that I made and as long as you have an advocate, you’ll be fine. Again, I cannot make the decision for you, I just know physically-you will be better off and you can correct the problems I experienced, in advance. The nursing staff problems are very evident when you spend an inordinate amount of time in the hospital. I pray your time will be exactly as expected...1 day in the SICU, 5 days on the 7th floor and a week hanging out at family housing. Pray, ask for guidance and make that phone call to secure the surgeon that you chose. If the good doc is worth his salt, he won't be offended. As I've said, I understand docs have to learn somehow, but if I would have thought to ask-I would have declined if I knew an intern was set-up to work on my husband, who is my heart.0 -
I am so so sorry to hearDanaM said:Use my bad for your good
Jimbo-
I certainly can’t make this decision for you, but I can say for a fact that the trauma with an MIE is nothing compared to the open thoracic version. As we were discussing (a few families of patients being treated by Dr. Luketich) residents training and such, one family member told me that her mother made it a condition prior to entering Presby for the MIE that Dr. Luketich and he only, was authorized to conduct the procedure on her. You have advance notice of this issue now and I think it would only take a phone call/inquiry to solve that problem.
Secondly, as long as you have someone to watch your back in the hospital, you will be fine. It’s the others that seem to be neglected. At times, like another lady stated, the nurses were a little irritated that I was there so much. If you’re worried about being watched, then something is wrong. As much as they dislike it, if someone is present with you, you will be OK. There were times when on the overnight shift, I knew I had a truly competent and compassionate nurse (his name was Donnie) and I knew he was working three nights and I trusted him. And so, I felt comfortable leaving Billy in his hands. He even called my cell phone to let me know that one of the post-op endoscope procedure time had changed. The doctors didn’t. I also left my cell number everywhere, except the bathroom wall and wrote it on the board when we got to a regular room and instructed any nurse to call with any issues at any time.
After a while, if the wind shifted a degree, they called my cell phone. Of course, that was after I called a hospital administrator and we conferenced, me and the surgical residents and the ICU doc right in the center of the ICU after I blew a gasket. A few good things I can tell you is that Tim Coleman, who oversees Dr. Luketich’s patients on the 7th floor thoracic ward is an outstanding person. In the beginning, when I couldn’t get answers and before we were on the 7th floor, he willingly answered questions that I had, helped push for a room when none were available and in general was a very compassionate person who was truly interested in the welfare of patients. A mover and a shaker. Should you need any respiratory assistance (God willing, you do not) please ask for Trish Roth, who is a respiratory technician-also smart as a whip and very aggressive with getting folks on the road to wellness. I can remember days I never saw a respiratory technician even though Billy was assigned one all day-and Trish Roth came across my husband while she was rounding. She cleaned his trach and took time to remove the sutures holding the trach in place because they were oozing infectious material. After that, she never failed to stop in and check him, on her own nickel because she was concerned. It is acceptable to ask for a specific respiratory therapist. Intelligence and compassion is her forte.
I would strongly suggest a phone call in advance to secure an understanding that Luketich be the only surgeon authorized to perform the procedure. Apparently, it has been done, but I just assumed…… Live and learn. As I probably mentioned before, a lady who had the same procedure right after my husband had the same problems and I would bet, if I were a betting lady that one of the interns performed the procedure as well.
Take heart and don’t fear. You have the opportunity to NOT make the mistakes that I made and as long as you have an advocate, you’ll be fine. Again, I cannot make the decision for you, I just know physically-you will be better off and you can correct the problems I experienced, in advance. The nursing staff problems are very evident when you spend an inordinate amount of time in the hospital. I pray your time will be exactly as expected...1 day in the SICU, 5 days on the 7th floor and a week hanging out at family housing. Pray, ask for guidance and make that phone call to secure the surgeon that you chose. If the good doc is worth his salt, he won't be offended. As I've said, I understand docs have to learn somehow, but if I would have thought to ask-I would have declined if I knew an intern was set-up to work on my husband, who is my heart.
I am so so sorry to hear about how tough a time the Billy had. I do appreciate that you shared his experience so that we can learn. I will request that Dr. Luketich be the only one to do the procedure. I am alright with residents observing but not performing the procedure. I will make sure to make that specification well known.
As for the clinicians, I work at a hospital and I always thought we provided excellent patient care. It wasn't until I became sick with this horrible disease that I had the privilege to experience it first hand. If it were not for the MIE not being offered here, I would have no problem at all having the surgery here. Our clinicians are top notch and treat patients like the kings and queens they should be treated like. I work in Information Services and it made me feel better about doing my job seeing the great work they do. I just wish every hospital was staffed with the caring people like ours.
I so much appreciate the fact you shared this. You are right, we do take for granted that the surgeon we go to will be the one to perform the procedure. I do feel that this procedure and Pittsburgh presents the best chance I have for survival it's just as I get closer, I get cold feet.
I am so so nervous about this.
Do you know anything about the Pastoral services at UPMC? I would like someone to come over and say a word before I go under. I expect to be prepared to meet the Lord just in case. I know we always should be but it never hurts to make sure.
Thanks again and please give my best to Billy in hopes of a speedy recovery and that the worst is behind you all.0 -
This comment has been removed by the ModeratorJimboC said:I am so so sorry to hear
I am so so sorry to hear about how tough a time the Billy had. I do appreciate that you shared his experience so that we can learn. I will request that Dr. Luketich be the only one to do the procedure. I am alright with residents observing but not performing the procedure. I will make sure to make that specification well known.
As for the clinicians, I work at a hospital and I always thought we provided excellent patient care. It wasn't until I became sick with this horrible disease that I had the privilege to experience it first hand. If it were not for the MIE not being offered here, I would have no problem at all having the surgery here. Our clinicians are top notch and treat patients like the kings and queens they should be treated like. I work in Information Services and it made me feel better about doing my job seeing the great work they do. I just wish every hospital was staffed with the caring people like ours.
I so much appreciate the fact you shared this. You are right, we do take for granted that the surgeon we go to will be the one to perform the procedure. I do feel that this procedure and Pittsburgh presents the best chance I have for survival it's just as I get closer, I get cold feet. I am so so nervous about this.
Do you know anything about the Pastoral services at UPMC? I would like someone to come over and say a word before I go under. I expect to be prepared to meet the Lord just in case. I know we always should be but it never hurts to make sure.
Thanks again and please give my best to Billy in hopes of a speedy recovery and that the worst is behind you all.0 -
our experience at PittsburghJimboC said:Always! I actually thought
Always! I actually thought about calling when I was sitting here with the jitters. I think I'm alright now lol. I was just getting spooked.
Even though Brendon didn't get the opportunity to have the MIE surgery, we were highly impressed with the surgical teams that spoke with us and that came to Brendon's room at least twice a day. The nursing staff however, sucks. Plain and simple. Please be sure that you have someone with you at all times because there were times when we would go 5 - 6 hours with no one checking on Brendon. We were not impressed at all with them and I am sooo glad to be at North Kansas City Hospital. The nurses here have heart and actually care for their patients. They are forever checking on Brendon...making sure he's not in any pain, getting his meds ON TIME!!! (without me having to remind them three, four, five times), getting him whatever he needs. I can not say the same for the nursing staff in Pittsburgh.
But would we go back to have the MIE by Dr. Luketich and his team if we are ever able to...MOST DEFINITELY YES!!0 -
My experience at PittsburghSusie_Brendon said:our experience at Pittsburgh
Even though Brendon didn't get the opportunity to have the MIE surgery, we were highly impressed with the surgical teams that spoke with us and that came to Brendon's room at least twice a day. The nursing staff however, sucks. Plain and simple. Please be sure that you have someone with you at all times because there were times when we would go 5 - 6 hours with no one checking on Brendon. We were not impressed at all with them and I am sooo glad to be at North Kansas City Hospital. The nurses here have heart and actually care for their patients. They are forever checking on Brendon...making sure he's not in any pain, getting his meds ON TIME!!! (without me having to remind them three, four, five times), getting him whatever he needs. I can not say the same for the nursing staff in Pittsburgh.
But would we go back to have the MIE by Dr. Luketich and his team if we are ever able to...MOST DEFINITELY YES!!
After reading everything yesterday, I admit, I was freaked the heck out. Since I have put my head together, I inventoried my experience with UPMC so far and it has been outstanding. Granted, I haven't been through the procedure yet but I expect nothing less than outstanding from it as well. From the time I first contacted them about the program, I receive a return email from Dr. Luketich's staff usually within minutes. They have been so incredibly supportive through the process. Even when I would hit them with what was a dumb question, I would receive a return within minutes. Stellar responses.
Originally I was going to come up to Pittsburgh the day before my surgery, meet Dr. Luketich and then have surgery the next day. When I told my wife and daughter this, they had concern that I wouldn't have met him beforehand. I shared this with Dr. Luketich's staff and they told me I was welcome to come up anytime so I did. When I arrived at Hillman Cancer Center, I was very impressed with the facility and was immediately greeted and led up to the right area by someone. My wait time was so short, I didn't have time to get my iPad on the Internet. I almost forgot to add. I received a phone call while eating breakfast. It was Hillman Cancer Center and they wanted to let me know that they were running an hour behind so they suggested I come in an hour later. When was the last time a health care facility had the care to do that. Usually you would just be sitting there for an hour looking at your watch. When I arrived, total time start to finish was less than an hour with very little waiting around in one place.
When I got back in my exam room, someone came in who was either a student or resident and went over my case with me. I told my wife that it was possible Dr. Luketich was in surgery and didn't have time to meet with me directly. Well, that was not the case. He came in shortly and went over everything with me and even took the time to answer my questions. I was so very impressed. I felt like a new man leaving there with the infusion of hope.
I was ready to back out yesterday and stay home for the open IL procedure but like I said, my experiences have been so incredible with UPMC so far.
My statements by no means should take anything away from what anyone has said. It is good, no, GREAT advice to have an advocate to speak for you and protect you when you are unable to. As the saying goes, one bad apple can ruin the bunch. Well, it only takes one or two clinicians who let their quality of care suffer due to overworking or personal reasons to give a facility a bad name. That in no way diminishes the excellent care that the other clinicians provide.
My experience details only my experience and your mileage may vary.
Good luck to all of who are suffering from this horrible disease. May God Bless us all and those that help us.0 -
You have to be comfortable with your choice.JimboC said:My experience at Pittsburgh
After reading everything yesterday, I admit, I was freaked the heck out. Since I have put my head together, I inventoried my experience with UPMC so far and it has been outstanding. Granted, I haven't been through the procedure yet but I expect nothing less than outstanding from it as well. From the time I first contacted them about the program, I receive a return email from Dr. Luketich's staff usually within minutes. They have been so incredibly supportive through the process. Even when I would hit them with what was a dumb question, I would receive a return within minutes. Stellar responses.
Originally I was going to come up to Pittsburgh the day before my surgery, meet Dr. Luketich and then have surgery the next day. When I told my wife and daughter this, they had concern that I wouldn't have met him beforehand. I shared this with Dr. Luketich's staff and they told me I was welcome to come up anytime so I did. When I arrived at Hillman Cancer Center, I was very impressed with the facility and was immediately greeted and led up to the right area by someone. My wait time was so short, I didn't have time to get my iPad on the Internet. I almost forgot to add. I received a phone call while eating breakfast. It was Hillman Cancer Center and they wanted to let me know that they were running an hour behind so they suggested I come in an hour later. When was the last time a health care facility had the care to do that. Usually you would just be sitting there for an hour looking at your watch. When I arrived, total time start to finish was less than an hour with very little waiting around in one place.
When I got back in my exam room, someone came in who was either a student or resident and went over my case with me. I told my wife that it was possible Dr. Luketich was in surgery and didn't have time to meet with me directly. Well, that was not the case. He came in shortly and went over everything with me and even took the time to answer my questions. I was so very impressed. I felt like a new man leaving there with the infusion of hope.
I was ready to back out yesterday and stay home for the open IL procedure but like I said, my experiences have been so incredible with UPMC so far.
My statements by no means should take anything away from what anyone has said. It is good, no, GREAT advice to have an advocate to speak for you and protect you when you are unable to. As the saying goes, one bad apple can ruin the bunch. Well, it only takes one or two clinicians who let their quality of care suffer due to overworking or personal reasons to give a facility a bad name. That in no way diminishes the excellent care that the other clinicians provide.
My experience details only my experience and your mileage may vary.
Good luck to all of who are suffering from this horrible disease. May God Bless us all and those that help us.
Jim, it sounds like you’re happy with your choice and that is the important thing. I interviewed two doctors from two outstanding Boston hospitals. Both doctors were very capable of doing the surgery and both hospitals are rated amongst the best in the country. What it came down to for me is what doctor I felt most comfortable with. I’m now six months out and have no regrets on my choice. Just trust your gut feeling and move forward.
Keep us posted,
Joel0 -
I agree SusieSusie_Brendon said:our experience at Pittsburgh
Even though Brendon didn't get the opportunity to have the MIE surgery, we were highly impressed with the surgical teams that spoke with us and that came to Brendon's room at least twice a day. The nursing staff however, sucks. Plain and simple. Please be sure that you have someone with you at all times because there were times when we would go 5 - 6 hours with no one checking on Brendon. We were not impressed at all with them and I am sooo glad to be at North Kansas City Hospital. The nurses here have heart and actually care for their patients. They are forever checking on Brendon...making sure he's not in any pain, getting his meds ON TIME!!! (without me having to remind them three, four, five times), getting him whatever he needs. I can not say the same for the nursing staff in Pittsburgh.
But would we go back to have the MIE by Dr. Luketich and his team if we are ever able to...MOST DEFINITELY YES!!
If you do not have a good nursing staff then all is lost. Its the sams no matter where you go or what you do. First impressions with people are forever lasting. The office manager at Emory made my life and Vince's a living hell. I will never get over that. SHE made decisions whether or not my husband would have an appointment or not. I am so mad at myself for not taking a bigger stand but as I said in another post I was totally unknowledgeable.
It is my own fault that I did not tell the dr in the beginning how I felt as I was afraid.
We are all in this together so I feel that if you get the short end of the stick in certain areas it is up to us to say something.
I am sure Dr. Liketich would be appauled if he knew this was the case. Any good dr would be.
So maybe out of your story a lesson can be learned. I think of you all the time and only pray that brendon kicks this beasts A..
Love
barb0 -
He WILL!!!mrsbotch said:I agree Susie
If you do not have a good nursing staff then all is lost. Its the sams no matter where you go or what you do. First impressions with people are forever lasting. The office manager at Emory made my life and Vince's a living hell. I will never get over that. SHE made decisions whether or not my husband would have an appointment or not. I am so mad at myself for not taking a bigger stand but as I said in another post I was totally unknowledgeable.
It is my own fault that I did not tell the dr in the beginning how I felt as I was afraid.
We are all in this together so I feel that if you get the short end of the stick in certain areas it is up to us to say something.
I am sure Dr. Liketich would be appauled if he knew this was the case. Any good dr would be.
So maybe out of your story a lesson can be learned. I think of you all the time and only pray that brendon kicks this beasts A..
Love
barb
Hi Barb,
Yes, Brendon plans on kicking a lil a**!!! He is very determined!! Brendon is still in the hospital here in KC. He got C-Diff so I get to wear the cute little isolation suit and gloves...I'm looking mighty cute!!! :-) He also got a Denver Drain put in his abdomen today. They drained another 5.3 liters of fluid off of him again today...Friday it was 7 liters. He is on the feeding tube 24 hours a day at a slow rate and this seems to do well with his tummy...no getting sick!! YEAH!!! He also is eating about 500 calories a day as well..this is HUGE considering for many many weeks he didn't eat that much all together. He will have his 2nd chemo treatment on Friday. We are determined to go back to Pittsburgh to still have the surgery in 18 weeks. This is when chemo will be over. Yeah, so the nurses weren't the greatest...but as I mentioned before, Dr. Luketich and his team were awesome!!! So, we will deal with the over-worked, un-emotional nurses to have the BEST!!! Thank you sooo much for keeping Brendon in your thoughts and prayers! It means the world to us!!
Love,
Susie0 -
Hi Susie & Brendon,Susie_Brendon said:He WILL!!!
Hi Barb,
Yes, Brendon plans on kicking a lil a**!!! He is very determined!! Brendon is still in the hospital here in KC. He got C-Diff so I get to wear the cute little isolation suit and gloves...I'm looking mighty cute!!! :-) He also got a Denver Drain put in his abdomen today. They drained another 5.3 liters of fluid off of him again today...Friday it was 7 liters. He is on the feeding tube 24 hours a day at a slow rate and this seems to do well with his tummy...no getting sick!! YEAH!!! He also is eating about 500 calories a day as well..this is HUGE considering for many many weeks he didn't eat that much all together. He will have his 2nd chemo treatment on Friday. We are determined to go back to Pittsburgh to still have the surgery in 18 weeks. This is when chemo will be over. Yeah, so the nurses weren't the greatest...but as I mentioned before, Dr. Luketich and his team were awesome!!! So, we will deal with the over-worked, un-emotional nurses to have the BEST!!! Thank you sooo much for keeping Brendon in your thoughts and prayers! It means the world to us!!
Love,
Susie
You are
Hi Susie & Brendon,
You are so in my thoughts and prayers.
Ann0 -
Glad you have a plan of actionSusie_Brendon said:He WILL!!!
Hi Barb,
Yes, Brendon plans on kicking a lil a**!!! He is very determined!! Brendon is still in the hospital here in KC. He got C-Diff so I get to wear the cute little isolation suit and gloves...I'm looking mighty cute!!! :-) He also got a Denver Drain put in his abdomen today. They drained another 5.3 liters of fluid off of him again today...Friday it was 7 liters. He is on the feeding tube 24 hours a day at a slow rate and this seems to do well with his tummy...no getting sick!! YEAH!!! He also is eating about 500 calories a day as well..this is HUGE considering for many many weeks he didn't eat that much all together. He will have his 2nd chemo treatment on Friday. We are determined to go back to Pittsburgh to still have the surgery in 18 weeks. This is when chemo will be over. Yeah, so the nurses weren't the greatest...but as I mentioned before, Dr. Luketich and his team were awesome!!! So, we will deal with the over-worked, un-emotional nurses to have the BEST!!! Thank you sooo much for keeping Brendon in your thoughts and prayers! It means the world to us!!
Love,
Susie
Sure hope he continues to thrive. You all have been through a wringer. Sometimes I don't think general hospital staff understand just how hard the family, patient and everyone, are fighting for survival. We're in a foreign world called esophageal cancer; scared (I know I was); knowing so little and afraid someone will do unintended harm while having the best of intentions; and support staff can be the key to a good experience or put a sour turn on the good experience, masking the good that has occurred. When I used to do therapy, I always reminded myself when talking with concerned parents that while I knew where I was going and had seen the problem many times, it was new to them, it was their child, and it was my responsibility to assuage their anxiety. The best news of all is that there is a possibility of surgery in the future for Brendon. Praying that you will have continued good response and that you can beat this thing. We are all pulling for you. Mary0
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