5/16/01: I received an E-Mail from my coordinator, Leslie Johnson. This document explains the process for living donation of my liver.:p>
From: "Johnson, Lesley" <Lesley_Johnson@URMC.Rochester.edu
>To: "'email@example.com'" <firstname.lastname@example.org
>Subject: live donor liver transplant letter
>Date: Wed, 16 May 2001 13:40:11 -0400
Welcome to the Liver Transplant Program at Strong Memorial Hospital / University of Rochester. The purpose of this letter is to offer general information on the Live Donor Liver Transplant Program, including selection of potential donors, evaluation process, and the surgical procedure. It is important to note that during this process the potential recipient is not removed from the cadaveric waiting list and if an acceptable donated liver became available during this period it would be used. In addition, the donor's confidentiality regarding medical history and results of the required tests are not shared with others without written consent of the donor.
Live Liver Transplantation Live Donor Liver Transplantation involves surgically removing a portion of a healthy donor's liver and transplanting it into a sick recipient. The first successful pediatric live related liver transplant was performed in Australia in early 1989. Later that year it was performed in the United States. This type of procedure was initially developed in response to the extreme shortage of donor organs for children. Until recently, this technique was almost exclusively used in small children. However, the increasing pre-transplant mortality and the growing shortage of donors has led to the use of this technique in adults.:p>
In adult live donor liver transplantation the right lobe of the liver is removed from an adult donor and transplanted to an adult recipient. The advantage to this type of transplant over cadaveric transplant is the recipient does not need to wait for a donor organ to be located. Also there is a higher likelihood of immediate function of the organ, the unlikelihood of liver disease in the donor, and the theoretical advantages of better match, all of which have the potential to improve the transplant outcome of the recipient.
Can I be a Living Donor? Not all adults are able to donate portions of their liver. First, the blood type of the donor and recipient must be compatible. Also, the donor's liver could be too big (in pediatric recipients), too small, of an unusual shape, or not have normal vascular (veins and arteries) anatomy, which may make donation risky, if not impossible. In addition, other health conditions of an adult may exclude them as candidates.
Donor Selection Dr. Francis Moore, pioneer in live related kidney transplantation, stated many years ago that living donation was justified as long as it carried minimal risk to the donor and a great benefit to the recipient. The reason for the low mortality in the donor population has been the very extensive and thorough work up of the donor. The evaluation is broken down into steps and includes:
Telephone interview with Transplant Coordinator. This allows us to gather information related to the potential donor and answer questions he/she may have about the procedure. We may ask you to send us documentation on your blood type if available and known. If not you will be asked to have this determined.
Next, an appointment is scheduled for the candidate to be seen in the Liver Transplant Outpatient Clinic. At this the liver donor coordinator and social worker will interview the candidate. You will have the opportunity to ask questions. On this day the candidate will then meet with physician for a complete history and physical, initial blood work will be drawn, and an abdominal ultrasound will be performed to assess hepatic blood flow. If any abnormalities or inconsistencies are revealed the evaluation process stops at this point.
The next step consists of more specific testing. A Psychological interview will assess a persons understanding of the depth of the procedure and assess whether the donor is partaking voluntarily and without pressure from the recipient, family members, or medical personnel. Blood work includes immunology studies, hepatitis and infectious disease screening. A urine sample will be obtained for routine analysis and pregnancy testing for females. Diagnostic tests consist of a Computerized tomographic (CT scan) exam to measure liver volume, a chest x-ray, pulmonary (lung) function tests, EKG, echocardiogram of the heart and a liver biopsy. Again, if any abnormalities are revealed evaluation stops.
Step three includes angiogram in radiology to more specifically
outline the potential donor's liver anatomy and blood vessels. In addition, an anesthesiologist will review prior studies of the donor's heart, lungs and laboratory tests. The anesthesiologist will then meet with the donor to discuss the studies, anesthesia history, and risks involved in general anesthesia. Autologus (own) blood donation is discussed as an option. (I never met with the Anesthesiologist until I was admitted!)
Once all the above steps are completed and approved the donor will discuss testing results with the live donor coordinator. This may also include a meeting with a Transplant Surgeon. Risks and benefits of surgery are reviewed and a surgery date is determined. The donor and the recipient are admitted the day prior to surgery. Additional laboratory tests are often ordered and pre-operative preparation takes place. A transplant surgeon will meet with the donor and recipient to again review the plan of care and surgery.
Living Donor Surgery The donor is first brought to the operating room. Surgeons remove a portion of the donor's liver. A drain is inserted into the abdomen to facilitate drainage. The operation takes 4 to 6 hours.
Recipient Surgery The recipient's surgery does not start until the segment of the liver is recovered and ready to be transplanted although the patient will be in the Operating Room being prepared for the procedure.
Donor Recovery The donor will remain in the hospital for five to seven days provided there are no complications. Occasionally a donor may be monitored more closely in the ICU. The donor's incision heals under surgical bandages. The incision is held together with staples. Pain medication is available. Once the donor returns home, activity is limited for the next 4 to 8 weeks. The donor may experience fatigue, incision site pain and loss of appetite during this time.
Cost to donor There is no cost to the donor for the evaluation testing, the surgery, or post-operative follow up. If the donor is employed outside the home they would need to be cleared by their employer for elective surgery and the temporary disability that would result.
Summary In summary Live Donor Liver Transplantation provides an option for patients sick from End-Stage Liver Disease. It is not an option for every patient or family. It takes careful consideration of the donor, family, and recipient.
Advantages, disadvantages, risks, and benefits should all be weighed and an informed decision made. The members of the Liver Transplant Team at Strong Memorial Hospital are available to answer questions and assist potential donors and their families in this process. Again, confidentiality of the donor is ensured.
If you have questions, you can call (716) 275-5875. Ask to speak to a Liver Transplant Coordinator about the Live Donor Liver Transplant Program. Theoffice hours are Monday through Friday, 8-4:30pm.
The next step… I receive a copy of my schedule for all the tests that need to be run over the next few days.
5/22/01LIVER DONOR EVALUATION SCHEDULE
FOR: Sherry Dampier-Bunton
CT SCAN OF LIVER 5/22/01 9 am
Radiology-Ground Floor, Red elevators
Nothing to eat for 2 hrs before
ECHOCARDIOGRAM 5/22/01 11 am
AC-Ground, silver elevators in lobby
PULMONARY FUNCTION TESTS 5/22/01 1 pm
3rd Floor, Red elevators, follow signs
AC-2 silver elevators in lobby
PHYSICAL EXAM, HEPATOLOGIST 5/22/01 1:45 pm
Dr. Shaw-Stiffel (He was Unavailable/Out of the office)
AC-2 silver elevators in lobby
Radiology-Red elevators, Ground floor 5/22/01 2:30 pm
Nothing to eat or drink for 6 hrs before (CT Scan at 9am Required drinking a quart of liquid…)
BLOOD WORK 5/22/01 after all above
Lobby-on left past coffee concession
SOCIAL WORKER-KAREN PORTERFIELD 5/23/01 8:30 am
AC-2 silver elevators in lobby
BLOOD WORK, CHEST XRAY, EKG 5/23/01
Lobby-on left past coffee concession
ANGIOGRAPHY 5/24/01 8 am
Radiology-Ground floor, Red elevators
NOTHING BY MOUTH AFTER MIDNIGHT, DRIVER NEEDED
You will be asked to report earlier to the Ambulatory Surgical Center, they will call you the night before
PSYCHOLOGICAL EVALUATION 5/24/01 1:30 pm
Dr. Mark Nichols
AC-2, silver elevators
(Dr. Nichols was unavailable to meet this day. The meeting could never have taken place this day anyway because I was required to lie flat for 5 hours and then sit in a chair for 1 additional hour after the procedure)
5/29/01: I receive another E-Mail from my coordinator. This was one of the first indicators that a lack of communication exists.
> From: "Johnson, Lesley" <Lesley_Johnson@URMC.Rochester.edu>
> To: <email@example.com>
> Sent: Tuesday, May 29, 2001 10:03 AM
> Subject: donor evaluation results
Hi, I hope you had a safe trip home. The results of your evaluation testing have come back normal. I heard that you did get to see Dr. Nichols afterall. We can schedule surgery if you'd like. We normally perform live donor liver transplants on Tuesdays and Fridays with admission the day before. Let me know. Lesley
5/29/01: My response
5/29/01 > From: Sherry Dampier-Bunton
> Sent: Tuesday, May 29, 2001 7:27 PM
> To: Johnson, Lesley
> Subject: Re: donor evaluation results
Thanks for sending the results as soon as you got them back. I did not get to meet with Dr. Nichols because he had to cancel and I was unavailable Friday. I was a little confused when I went in for the biopsy Thursday because they did an additional test that laid me up for 6 hours after the procedure, which would have interfered with our appointment anyway...unless he was planning to see me in the ambulatory surgery unit? I thought we could just reschedule that meeting when I return.
I am working things out with my employer, HR is checking on Short Term Disability because there was a concern about qualifying because it is elective surgery...I personally don't see the difference between this and pregnancy. It is all a choice! Regardless, we will move forward. I will let you know the date as soon as I get things straight with my employer.
I am thinking Tuesday would be best because my husband wants to be there.
Keep in touch.
5/30/01: Another E-Mail that makes no sense at all considering the events as they unfold later on
From: "Johnson, Lesley" <Lesley_Johnson@URMC.Rochester.edu>
To: "'Sherry Dampier-Bunton'" <firstname.lastname@example.org
Sent: Wednesday, May 30, 2001 9:04 AM
Subject: RE: donor evaluation results
Sherry, Dr Marcos wanted me to let all potential know that we have openings in our schedule next week. Just an FYI. Let me know Lesley
5/30/01: We set a date!
From: "Johnson, Lesley" <Lesley_Johnson@URMC.Rochester.edu>
To: "'Sherry Dampier-Bunton'" <email@example.com>
Sent: Wednesday, May 30, 2001 3:01 PM
Subject: RE: donor evaluation results
Thanks for your prompt reply. June 12th would work out well. Admission for you and your Mom would be June 11th at 11am. You would both report at the 2nd floor ambulatory clinic. Both of you will need to be on clear liquids from after midnight Sunday (going into Monday). I will have our secretary book your surgery for the 12th. Lesley
5/30/01: More Tests????
> From: "Johnson, Lesley" <Lesley_Johnson@URMC.Rochester.edu>
> To: <firstname.lastname@example.org>
> Sent: Wednesday, May 30, 2001 3:48 PM
> Subject: donor information
You Mom told me you would like to donate a unit of blood. You can do that in Georgia if you want. It will need to be drawn before next Tuesday (6/5/01) If you can find out the phone number of a local blood bank I can call and arrange it. You will also be getting a tube for blood collection in the mail. Please have this drawn as soon as possible and return. It is for tissue typing compatibility. Thanks Lesley
5/30/01: Is the surgery still a go? I need clarification.
> From: Sherry Dampier-Bunton [mailto:email@example.com]
> Sent: Wednesday, May 30, 2001 6:58 PM
> To: Johnson, Lesley
> Subject: Re: donor information
I just want to check for understanding... this blood that I would like to donate would be for me for during or after the procedure. Will they ship it?
Tissue Typing... I thought we had all the blood work done? Is this a factor in determining compatibility? Are you sure that everything is a go?
I will get it done as soon as it gets here. Please also copy your response to firstname.lastname@example.org so I can respond from work.
5/31/01: We are still on for the 12th
"Johnson, Lesley" <Lesley_Johnson@URMC.Rochester.edu> on 05/31/2001
To: Sherry Bunton
Subject: RE: donor information
Yes, it is still a go. I didn't realize that your Mom's sample had expired already (they are only good for 3 mos.) and the donor's sample is only good for 48 hrs. So we never got a compatibility test it is New York State law for any transplant. It would only affect the immunosuppression agents used for your Mom. We haven't had to transfuse any donors but if someone has
donated their own they will get that unit during surgery. They use a recycling system for blood lost during the procedure and you get your own back. Lesley
6/6/01: The nightmare begins!
Received a phone call from my mother while driving in from Georgia. She was extremely upset. The insurance company has not received adequate documentation from Westfall Associates and Dr. Nichols, so they have denied her for surgery. Was informed that the surgery would be cancelled and rescheduled for a later date. I contacted Linda in transplant unit. I was informed that the surgery had not been cancelled, and we should be able to get the documents to the insurance company in time. Surgery scheduled for the 12th still.
6/7/01: Met with Dr. Nichols and I realize that my coordinator is not keeping me informed and get very frustrated!
Met with Dr. Nichols to do the Psychological Evaluation. He was not able to provide relevant answers to many of my questions. I asked why my mother was required to sign a document that states she will participate in any program that Westfall Associates deems necessary, even after transplantation. He said that if she rejected my liver at any time, as long as it was not alcohol related, then she would be eligible for cadavaric transplantation even if she did not complete the programs. He said he would look at the document when my mom came in following our evaluation and never did.
Called Leslie Johnson to follow up and find out what the next step was while waiting for mom to come out of Dr. Nichols office. Was informed that the surgery had been moved to Friday the 15th because a cadaver liver transplant pushed back the surgery for a living donor that was scheduled that day. I understood the reasons for being pushed back but I was still livid! Leslie never attempted to contact us to inform us of this change, and also admits never informing me of the possibility of our scheduled surgery date being changed. I asked her what she was going to do about this and she informed me that another couple was scheduled for surgery on the 12th , but would find out if they would be willing to switch with us.
Dad called her back and left a message to call him. When she returned his call several hours later she had still not attempted to contact this other couple, but again offered to contact the couple to appease him.
We lost $200.00 on airline tickets, and Marty, my husband, had to reschedule his vacation time. At this point, we were unsure if he would be able to make it for the surgery, which leaves me without my support system.
6/8/01: More miscommunication, more misinformation!
Leslie called. The other couple was willing to switch dates with us but now moms blood tests show antibodies trying to reject my blood. She would have to go through a blood wash called plasma pheresis. There was no way we could do the surgery on the 12th now. Leslie was unable to confirm the surgery for Friday the 15th either.
Mom would have to go into the outpatient surgery unit on Tuesday the 12th for the blood wash. I was told to go to the hospital today to give another tissue type sample. It would be 3 green top tubes. Got there and it was 3 green tops and 2 other tubes. I had to call Leslie upon arrival because the paperwork was not at the admission desk, but was found at the blood work desk instead.
Was informed by Leslie at that time that a sample was also needed from my mother today. I told her that she never informed me that my mother needed to submit blood work today, and she was not with me. Leslie Johnsons response was I assumed she would come with you. She rescheduled moms blood work for Monday.
No one has followed up with us on the documents that were supposed to be delivered to the insurance company. Leslie also mentioned that mom and I would meet with Dr. Marcos on Monday.
6/9/01: We get a call from someone other than our coordinator to schedule an appointment, which creates more conflict and confusion.
Admissions/Radiology called mom. She is to report to the Radiology department on the ground floor at 12 noon to have a catheter inserted into her collarbone for the blood washI asked mom about the blood work and she said they told her if it needed to be done, they could do it there in Radiology. They had no idea how long this procedure would take.
6/11/01: The blow up! Discussions on how to improve communications are held, and the day from hell begins.
Received a call from Leslie at 11:30. We missed our appointment with Dr. Marcos at 9am. We had thought that the plasma pheresis took precedent, and we were informed all the blood work could be done during the procedure. (I questioned why we had not received a phone call by 9:30.) This phone call created a lot of unnecessary stress for us all!
We got to the hospital and we were extremely frustrated by the lack of communication that was going on. We met with Linda who is moms coordinator, and Leslie who is my coordinator. We asked why they were not disseminating the information to us regarding appointments and scheduling. Linda interrupted me several times and was extremely defensive. She was not actively listening to what I was saying, nor did she take any ownership of the lack of communication and ultimately offered no solutions to correct the problem. She concluded that she basically allowed Leslie to handle our case and attempted to step back and let Leslie explain. Both of them kept insisting that Radiology called on Friday not to establish an appointment, but to simply confirm it. This explanation was simply unacceptable because we were never contacted by either of the coordinators, prior to the call from Radiology. The conversation was headed no where so I requested that in the future, any appointments or requests for lab work to be sent via E-Mail by Leslie. She agreed to correspond and confirm appointments via E-Mail.
Leslie scheduled another appointment with Dr. Marcos for Friday, and then instructed mom to go to the lab to give a blood sample. The transplant was rescheduled for Tuesday. I gave Leslie my Short Term Disability paperwork.
We still got to meet with Dr. Marcos. He had informed mom during this meeting that alcohol did not play the major role in her liver disease. Her antibodies, which were attempting to fight off the Hepatitis, was what caused the extent of the livers damage. He said that if she never had a drink in her life, her liver would be in the condition it is today due to the Hepatitis. (So why did she have to jump through a million hoops when the Hepatitis was the controlling factor here?)
We asked Dr Marcos how long the plasma pheresis would take. We were told that we would find out when we got there because he did not know. We headed to Radiology.
Dad walked up to the receptionist and said “Bev Dampier is here”.
She never even looked up from the computer when she asked, “what are you here for?”
She asked, “what is the patients name?” (still, no eye contact)
Dad replies again.
She mumbles, “go to the grey area on your right.” (we were sort of confused with her lack of directions, and asked someone for help on the way)
We get to “the well” or “recovery” as they call it at 1:30pm.
Sharika asks “what are you here for”, and “what is your name?”
Sharika took mom’s blood pressure and then walked off without saying anything. Then she came back and asked a few questions and walked off again. No indication of what would happen next so we asked again how long the procedure would take. Rick informed us that they just had a few motor vehicle accidents and there would probably be at least an hour wait.
Another couple comes in and gets the same greeting.
“Your name? (Sharika walks away)
Do you know what you are here for?” (she again walks away as he is giving her an explanation.) The new couple asks Rick how long they should plan to be there and complained that no one would offer any information about the procedure, just that they should plan to be there for 2 hours. Once informed of the wait, they asked Rick if they could reschedule. He said he would check on that but never got back to them, so they just sat and waited.
During this time I am noticing that Rick seems to be running the department but is not getting much support from Sharika who at one point lashes out at him in frustration. He also becomes impatient with one patient and makes inappropriate remarks after leaving her because she is complaining about not wanting another tube inserted. The patient, Maria, asks Sharika a question and she offers to have the Doctor come and talk to her. She walks away but never picks up the phone to call anyone. Later Rick asks the person sitting at the desk to call someone to remove Marias tube; tell them to come and pull Marias tube so I dont have to deal with her anymore, and if they dont come, tell them I will do it myself.
Although Rick seems to be overworked and becomes agitated, I don’t think Maria heard his remark. He is good at offering information about the process while we were waiting, and tries to keep us informed.
A nurse comes in looking for patient “Frank Ferrah”, asking each patient what his or her name is. Frank seems to be lostI realize at this point I have heard what is your name and what are you here for at least 6 times. By now it is 3:45 and we dont seem to be getting any closer to having the catheter inserted. I start inquiring.
Rick says that bay 16 is about to open and she should be next. Then he looks at her chart and realized that she needs anti-clotting plasma and some blood test to determine which plasma to give her. So now we have to wait another 1-1 ½ hours for the blood work and insertion of plasma. INCOMPETENCE! This should have been done hours ago! Finally, at 6:30 pm they bring her to the procedure room.
The first question is “what are you here for?”
Mom is confused. (Dad looks at me in disbelief.)
Mom says “a catheter”
The doctor asks, “what kind?”
She mentions her neck.
Dad speaks up… “don’t you have this information in your computer?”
He says that he does, but it is easier to ask her, and she gave him enough information so he knows what he is supposed to be doing.
TRULY A FRIGHTENING EXPERIENCE! We leave the hospital at 7:45 pm.
6/12/01: Does This Happen Every Day?
Mom met with Donna in the Plasma Phoresis Department. She was very helpful and informative. The process was relatively painless. More miscommunication did occur. She was told to take her medication at 8am. This was a written directive on her instructional sheet given to her by Leslie, but she was not supposed to take this medication until after the procedure.
6/13/01 Leslie called to tell me to give MORE blood. Also Received E-Mail about getting ready for the surgery
Date: Wed, 13 Jun 2001 16:07:38 -0400
Bev and Sherry,
Just a reminder---You both need to be on clear liquids after midnight
tonight. Soda is ok, juice without pulp, coffee and tea without cream are ok. no powdered creamer but sugar is ok. See you both in clinci tomorrow. It may be a wait for your beds. About noon you both will start drinking a bowel cleansing preparation. I'll have you pick it up at the outpatient pharmacy tomorrow.
6/14/01: Postponed again!
Gave a blood sample and picked up the Bowel Cleansing Prep. No beds available, so they sent mom home after her treatment. We waited. Procedure postponed at around 3pm because the plasma pheresis was ineffective. We had to again contact Leslie to find out. Rescheduled for Tuesday the 19th. We were told that she would have to come in for another treatment on Monday and they were going to give her Friday off. Found out that a cadaver surgery was underway today. Wondered if this had anything to do with being rescheduled. Too many annoying details to mention, had a horrible headache and went to bed at 8:30pm.
6/15/01: So much for having Friday off?
Leslie called. Mom was sent back in for another treatment. Scheduled for another treatment on Monday.
6/17/01: Marty flies in. I get prepared to donatewill it happen?
6/18/01: More bloodmore horrible administration problems
Mom went in for her treatment. I signed the admission papers when I was there this morning to give another blood sample and to pick up the bowel cleansing solution. (again)
I went first to the blood lab and the lady refused to look for my paperwork and said that the administrative desk would have it. When I went to the administrative desk, they did not have the paperwork either so they had no idea what tests to run. I was having dejavu! They looked in the computer, filled out general information and sent me back to the blood lab. The lady again got really irritated with me and wanted to know who my doctor was. She still refused to look around her desk for the paperwork. I gave her Leslies number and told her to call her.
I left and went to the pharmacy. The pharmacy also had not received my prescription so I called Leslie and she said she would call it in right now.
Went back to the lab. Had the blood work done. (Leslie had faxed over the paperwork so it was probably still on the fax machine) I was told to report to the hospital no later than 2pm to move forward.
They told mom not to eat or take any of her 20 daily pills before she had the plasma pheresis treatment because we were going into the hospital today. The result of this stupid suggestion ends up landing her in the intensive care unit when her blood pressure drops to 85. (I believe this was a result of the new meds they put her on because she had major diarrhea in conjunction with no food all day, she was definitely dehydrated.)
We found out at 3:45 the surgery was off, again, for the 3rd time I had to call to find this out. The surgeon just told us she is now at the top of the list as long as she remains in intensive care, and the next liver that comes in is hers if it is 0 blood type. There are 5 people in the unit waiting for a liver right now but she is the only one with 0 blood. The only positive thing that could possibly come out of this is getting a cadaver liver.
When we arrived at the ICU we asked one of the people at the nurses station where Beverly Dampier was. (Dad had lost his way for a moment and forgot which way to go.) Mom was nowhere to be found! (the lady at the desk was chewing on her finger the whole time she was on the phone looking for mom) Dad suddenly remembered which way to turn so we wandered down the hall a short ways and found her ourselves.
The ICU is not the cleanest place to be. When we arrived there was a used blood transfusion bag on the table that was leaking. It leaked onto the tissue box so I threw it away.
No toilets in the ICU? They were made of PVC pipe with a bucket in the middle and had wheels on them. They were very high in the air and did not seem like a safe and stable place to be.
When we walked out, there was an open container of a bile like substance on the floor against a wall. In the meantime, 3 nurses sat in the administrative area talking amongst them selves a considerable amount of time.
Another frightening day at Strong!
It has been almost a full month since my last entry. I will try to summarize the events of the surgery as they unfolded. I was admitted on June 25th, 2001 for surgery. I had to spend the night in the hospital the night before so they could get me ready for surgery at 6am the following day. My husband Marty had already returned to Georgia, and was unable to take off additional time unpaid to be there for me. Needless to say, I was absolutely beside myself with utter frustration and disappointment that Strong had rescheduled us 4 times for this surgery. It is my opinion that their lack of communication with us, and the team, was a large factor in this happening.
The night before: When I arrived, they did not have any of my paperwork, so they were unprepared to admit me. They found a room within 15 minutes and I checked in. I then went to visit my mom in ICU. I returned to my room and met with the anesthesiologist for about 10 minutes and finished the bowel cleansing prep. I did not sleep well that night, I remember staring at the clock as the hours passed.
06/26/01: The day of the surgery through day 1: I remember nothing about being prepped for surgery, or even going into the operating room. All I remember is being wheeled down the hall. When I came out of surgery I do not remember coming to or anything about being in the ICU.
06/27/01: Day 2: The next thing I do remember was being moved to the 6th floor. This was my second day out of surgery. After this happened I realized I was not ready to be moved, I was in horrible pain and for the most part, the care really sucked on the 6th floor. My back seemed to be the biggest source of my pain, and I had difficulty moving around in he bed. I also felt helpless, a little scared, and definitely doped up from all the drugs although I never felt like I was getting enough.
Let me start by saying that my first bad experience with a nurse set my expectations of what lay ahead for my mother and I. This was my first night on the 6th floor and I had a visitor. I had been sitting in a chair and was ready to get into bed. I sat on the edge of my bed and called for a nurse to help me. When she arrived, I was still getting up the courage to get my legs hoisted up into the bed. I asked her to give me just a minute to adjust myself and try to get into the most comfortable position to raise my legs because I knew my stomach muscles would be weak and sore. Her response to my request was, I dont have time for this. After the initial shock came and went, I just told her to go ahead, my friend would help me into bed. She left without saying a word. So my friend, who meant well, tried to lift my legs and I felt what seemed like every muscle in my abdomen tear. I cried.
Note: There are too many terrible things I could say about the care at Strong to list. I will say this in defense of some of the staff because it is truly unfair to make such a blanket statement without clarification; I found there to be a few nurses that provided the best care they could under the circumstances, and I was elated every time I had the honor of being in their care.
06/28/01: Day 3: I woke up to an awful pain in my left arm. I looked over and noticed that my arm was extremely swollen and called the nurse. The problem turned out to be that the IV had slipped out of my vein, and the fluid was being pumped into my arm instead. What I could not understand was why the nurse who was supposed to be caring for me did not notice this because she came into the room several times to make the machine stop its endless and annoying beeping. She never bothered to even look at the IV site.
They removed the IV. They said something about an artery and I remember blood just spraying everywhere! Blood stained the IV machine, my clothing, my catheter bag, and the floor. It was so scary! I had the stains to remind me of this wonderful event because it was not properly cleaned up and I looked at the blood until I was off the IV and the catheter came out. My dad arrived, had a fit and called the head nurse. This was just the beginning of the obvious lack of care received on the 6th floor.
I walked a few times around the nurses station and everyone was saying I was looking well. I was still pretty out of it. Had one of the nurses comb my hair and put it in a braid. I was unable to hygienically take care of myself. I asked a friend to bring up some of those Kleenex wet wipes, which were really wonderful to have!
Not that this is relevant to my story, but to give you another example of why communication is vital… I watched the doctors and nurses and interns come in and out of the room to talk to my roommate who had received a kidney from a cadaver. She was rejecting the kidney but no one told her this. They ran endless tests and poked and prodded her day and night. The strange thing was, they would always ask her to tell them what tests had been run and what the results were. It was really frightening that no one seemed to know what was going on except my roommate. Lucky for her she had a pretty solid understanding of her body and the medical process. They tried to repeat tests on her. Several times she corrected the interns (or doctors) assumptions about results of certain tests pointing to the chart posted on her wall. No one even bothered to read any documentation that was available. It was frightening.
06/29/01: Day 4: Still not feeling well enough to even turn on the TV or the phone. My back aches, I am uncomfortable, but still get up and walk which seems to help. I am glad my mother is doing okay. Endless beeping and frustration!!!! No one listened. No one seemed to care. I heard it is not my job, I dont know, I am busy, I will be right back, or, I will get your meds (and no one came back) at least 30 times. The nurses would get frustrated with you and ignore you even more if you vented your frustration.
A person in the next room over had brought an audible bell and kept dinging it to get their attention. I thought, good for him! There were times I hit my call button for a nurse and waited over an hour for someone to show. Most of the time I just cried and tried to go back to sleep when no one showed.
They wonder why the patients are so frustrated, and the patients wonder why the nurses are so frustrated. It does not take a rocket scientist to understand what is going on here. The majority of these nurses lack basic human service skills. Some are over worked and burned out. Others nurses simply lack any ability to treat people humanely, they dont have the capability to help others. Those people should be weeded out of the profession quickly but no one has the time or energy to listen to the patients who complain. Lets face it. 95% of patients are probably very difficult to deal with because they are afraid and in pain. They are obstinate, and ornery. Nurses that are trained properly would not take the actions of their patients to heart and let their feelings get hurt. A nurse is supposed to provide care, and not get emotionally involved. This includes being available at all times, which was not the case, not even close!
06/30/01: Day 5: I was getting up and walking, and even visiting my mom on the 8th floor. Still having pain, but I turned on the TV and the phone.
07/01/01: Day 6: Feeling a lot better today! Unfortunately, not well enough to leave though.
07/02/01: Day 7: They took out 2 of my JPs tubes, which had been inserted to allow drainage. These are approximately 12-15 inch plastic tubes that have a flat white piece of plastic at the end with small holes in it. This set me back a bit; I felt an excruciating pain in my right shoulder when the first one was removed. I was told it might have hit my esophagus. The next tube seemed to hit my left lung. This was the worst part of all my days in the hospital; I did not even mind the GI tube coming out that much.
07/03/01: Day 8: My mother moved to the 6th floor and I started the quote of the day. This was prompted by the asinine remarks that the nurses and doctors made. Nurse Jen S. was the one nurse I had zero respect or tolerance for. She was emptying moms drainage tubes and my mom commented on how heavy the bottles were. Jen S. responded by saying that they could be pinned to her gown to alleviate some of the discomfort. She finished emptying the bottles and walked out of the room without pinning the bottles to her gown, even though the safety pins were already there. My mother was hallucinating from the drugs they had been giving her and there she was trying to pin these bottles to her gown. I asked her to wait for the nurse and stated loudly that it was her job! Jen was standing at the door and opened it asking if there was a problem in an accusatory voice. I explained I was not comfortable with my mom trying to pin this to her gown in fear of her stabbing herself with the needle. Jen was nonchalant when making the most profound statement I had ever heard, which showed her to be lazy and uncaring. If she pokes herself, she will just bleed! This was to become my first quote of the day, which I posted on the wall with the hope that this very same nurse would see how inappropriate this remark really was.
07/04/01: Day 9: Unable to see the fireworks from our room. What can I say? They lost my damn shoes!!!!!!!! I was supposed to go home tomorrow, the social worker said I could go after she made climb the stairs! But, unfortunately I had a horrible night and was not going anywhere. I was unable to lie flat on my back because I would get a shooting pain that traveled from my shoulder, under my breast and into my lung from my back every time I tried to inhale. I made a scene because I was in so much pain. I cried and screamed for someone to do something. The intern put his scope on my back and chest and told me I would live. He did no further troubleshooting and offered me nothing for my pain. I suffered through the night sitting up in a chair trying to do a crossword puzzle because I knew I was not going to sleep. Later I was told this may be water in my lungs.
07/05/01: Day 10: The second quote of the day came from that same intern trying to get me to check out of the hospital. He informed me at 6am on July 5th that I was safer at home because there are nasty bugs living in the hospital that dont live in my home. He told me I was more susceptible for infection in the hospital and I believed him because the bathrooms were always nasty. I shared a room so my roommates urine container was always in the toilet filled up, or sitting on the floor. I refused to void in the hat because my hat was never on the toilet. There was urine on the floor in the bathrooms that should have been mopped up.
This reminds me of another nurse who always spilled the contents when emptying my catheter and drainage tubes. She was nice but very clumsy and physically challenged in her role as a nurse. She was never around and when I ran out of pain medication because she never bothered to check on me. I had a fit a few days before and told the head nurse I did not want her tending to me. The head nurse got frustrated and angry with me saying that it takes an hour to order pain medication so I asked why it was not done an hour ago before it ran out. She said she was sorry she was at lunch. I explained that I did not give a rats ass about her lunch plans, and she better get me some pain meds pronto! The damn nerve!
So I had had enough, I went home!!!!!!!!!!!!! This process only took approximately 14 hours, and no one knew who the hell was supposed have my walking papers. The intern told me we have been patient with you, try to be patient with us. Whatever!
Day 11: Mom came home to day. It was so hard having 2 people out of commission in the house, I thought my dad would take the bridge! We found out that we were totally unprepared to handle the situation. We had nurses and aids here after a few days but they really were of no help to us. They would not do any of the things we needed done! The first aide washed moms hair and never even bothered to comb it or dry it. This was after she sat on the couch for the first 45 minutes while mom ate her lunch, (which I prepared) but when it was time to go she was outa here!! They dont do light housekeeping even though it is required on the form. Most of them just sit on the couch and talk to mom, one lady even read the newspaper! We hired a family friend to help us out with some of the housework for a few days.
I was changing moms dressings around her drainage tubes sometimes 3 times in a day. They needed to be emptied and recorded. We had to test her blood sugar 4 times daily and record those results. If needed, we were to administer insulin. Then they wanted me to run her IV every day. I agreed but the next day I drew the line because the nurse tried to change what I just learned the day before. I am not a nurse! I just had surgery too! It was out of control. I was trying to cook, clean, take care of my mother and my dog, and find time to rest? I blew a gasket and started hiding upstairs. I also asked Marty to fly home again! My feet and legs started to swell up.
7/09/01: Day 13::p>
I have been waking up between 2 and 4am every day to stretch out and take my pain pills because my back hurts. I usually go downstairs and work on the computer or watch tv for a few hours because I am too uncomfortable to sleep.
7/12/01: It is not over yet! Day 16
I was scheduled to have my staples removed on Monday the 8th. I explained that I was still having problems with the water in my lungs and suffered the night before. They did not want to remove the staples. They told me to come back the following Thursday to have them removed and sent me home with a prescription for the water weight gain. This made me vomit and get a massive headache. I left a message for my coordinator. No one ever called me back.
I called today to find out what time I should come in and was asked how far away I live. I told her 10 minutes and she told me to come in now. I asked her to be sure someone would be available to remove them and after checking she said that Dr. Marcos wanted me to wait until Monday to have them removed. I was upset because I really wanted them out today. She said that Leslie told her that Dr. Marcos wanted to wait because I had water below the incision line. I thought it was ridiculous, and felt they were lying to me.
The nurse called and was informed that the reason they did not want to remove the staples was because of the additional fluid I was taking on. I had informed Leslie by message on July 10th that I had stopped taking the water reduction pill, so I guess I was going to have the staples in forever?
Leslie is not very good at coordinating or following up. I Checked on my Short Term Disability claim, it still had not been received even though Leslie said it was mailed out before the 4th of July.
E-Mail to employer about my claim
>"sherry dampier-bunton" <email@example.com> on 07/12/2001 12:39:53
>To: Chris Kirk
>Subject: STD - Liver Transplant
I was just wondering if you received the paperwork yet and if I will get paid starting on my last day out of the office which I believe was June 5th.(We can check with JAX Hr for my last day worked.) I need to get some bills paid so please let me know as soon as you can. Thanks so much.
>From: "Chris Kirk" <firstname.lastname@example.org>
>To: "sherry dampier-bunton" <email@example.com>
>Subject: Re: STD - Liver Transplant
>Date: Thu, 12 Jul 2001 13:09:08 -0400
>As of the mail that came in today, I still haven't received it.
I contact my coordinator about the problem
From: sherry dampier-bunton [mailto:firstname.lastname@example.org]
Sent: Thursday, July 12, 2001 2:12 PM
To: Johnson, Lesley
Subject: Leslie - Please Reply
Chris is going to FedEx me another form. I have to say I am quite frustrated that this information seems to have fallen through the cracks, this whole entire process seems to always be in some fashion disorganized so I am not surprised. Maybe we can follow up with whomever was supposed to mail it out? It is probably still sitting on their desk because the mail system simply does not take this long, regardless of the holiday. I will bring in the new form as soon as I get it, can you please let the people involved with filling it out know it is coming. It is ridiculous that I am having to start this whole process over but I really need a paycheck, it has been a month all ready!
'sherry dampier-bunton' <email@example.com> Save Address
RE: Leslie - Please Reply
Thu, 12 Jul 2001 14:41:37 -0400
Sherry, I checked into your paper work it went out on 7/6/01. If A new form is sent and can be faxed back we will fax it ASAP. Sorry for the delay.
7/17/01: Getting the staples removed. Day 21
Had the staples removed yesterday. I am in 50% more pain now ! My incision is burning relentlessly and is also really itchy. I am so annoyed by it I am going crazy. It feels like my skin is stretching and all the nerve endings must be growing back because I have that pins and needles feeling you get when your leg falls asleep. The nurse said that everything looks fine, but I just want to peel these stupid strips off! No one should have to endure thiseveryone keeps telling me to just ignore it. That is kind of hard to do. A few days ago I noticed that my breasts are leaking fluid, my body thinks it is pregnant! The doctors said that they have had other patients that have experienced this as well.
7/18/01: Response to e-mail questions from relatives Linda & Michael Day 22
Was it what you expected? AS FAR AS THE SURGERY ITSELF GOES, I WAS NOT REALLY AFRAID GOING IN. I HAVE NEVER HAD ANY SURGERIES BEFORE SO I HAD NO EXPECTATIONS REALLY. I HAD DONE QUITE A BIT OF RESEARCH PRIOR TO THE SURGERY SO I GUESS I HAD SOME KNOWLEDGE OF WHAT WAS GOING TO HAPPEN. HOWEVER, WHAT I DID NOT EXPECT WAS THE LEVEL OF CARE I RECEIVED BEING SO POOR DURING MY RECOVERY. I DID NOT EXPECT SOME OF THE STAFF TO BE SO UTTERLY INCOMPETENT, UNCARING, AND HAVING NO PEOPLE SKILLS. JEN S. SHOULD NOT EVEN HAVE A JOB IN THE NURSING PROFESSION, I WON'T GO INTO DETAIL BECAUSE YOU WOULD BE READING THIS ALL NIGHT. I HAVE ABOUT 14 PAGES OF DOCUMENTATION ABOUT THIS WHOLE FIASCO THAT I PLAN TO PUBLISH IN A FEW MONTHS. I WILL SAY THIS. THE DOCTORS AND SOME OF THE STAFF ARE INCREDIBLE AT MEDICINE AND SURGERY. UNFORTUNATELY, THIS ACCOUNTS FOR LITTLE IN THE BIG PICTURE WHEN ADMINISTRATIVELY THEY ARE COMPLETELY LACKING THE SKILLS TO DO A MEDIOCRE JOB OVERALL. NO WONDER THEY HAVE THE LAWSUITS THEY HAVE, THERE IS NO COMMUNICATION! I SAW PATIENTS FAMILY MEMBERS COMING IN TO VISIT AND THE PATIENTS WERE TEMPORARILY MISSING. AGAIN...I COULD GO ON. SO, AS FAR AS THE SURGERY GOES I AM EVER SO GRATEFUL TO EVERYONE WHO HAD A HAND IN SAVING MY MOTHERS LIFE. MY GOAL IS NOT TO ADVERTISE THE HORROR STORIES BUT TO SEE SOME CHANGES BEING MADE THAT WILL BENEFIT ANYONE THAT HAS NO CHOICE IN WHICH HOSPITAL THEY GO TO.
Was everything explained to you fully? ONE WORD - NO. MANY QUESTIONS I HAVE ASKED HAVE NOT BEEN PROVIDED WITH DEFINITIVE ANSWERS. IT SEEMS MORE LIKE A GUESSING GAME. I WAS ASKED SEVERAL TIMES IF I HAD ANY QUESTIONS THOUGH...
Is your liver regenerating as it should be? I HAVE BEEN ASKING MYSELF THAT QUESTION AS WELL, SO I DECIDED TO ASK ONE OF THE TRANSPLANT TEAM MEMBERS TO SEE BEFORE AND AFTER PICTURES. I WAS BASICALLY TOLD THAT DR. MARCOS DID A STUDY ON 100 PATIENTS AND THEY ALL SHOWED THE LIVER RETURNING TO NORMAL SO IT WAS NOT NECESSARY TO DO ANY TESTS - MY LAST APPOINTMENT WAS TO REMOVE THE STAPLES AND THEY WOULD NOT NEED TO SEE ME ANYMORE. SO TO ANSWER YOUR QUESTION...I GUESS SO?
I will send you a copy of the documentary when it is finished. Keep in touch!
07/20/01: Day 25 after surgery
Still feeling really sore today. I am very frustrated because I thought for sure I would be so much better by now. My muscles are aching in my stomach near the incision. The pins and needles from the nerve endings growing back have sort of dissipated though. I am grateful for that. I feel sort of like I have taken some steps backwards.
6 days ago, I was able to walk around at the art festival for 4 hours without too much trouble. Today, I can barely stand for 2 hours at the grocery store and have to sit down. I must have looked like an idiot doings squats in the store holding onto the cart for support while stretching my back. My back is hurting and so do my lungs. I get short of breath quickly and feel very tired for the past few days. I have actually been pretty much in bed lately which may be why I am hurting in all those places. So today, I was hoping to get some exercise and stretch out. I took off the last of the steri strips this morning after I showered. I keep thinking if I had some support around the incision I might feel better. Who knows.
07/21/01: Day 26
I was still in bed for most of the day today. It did not help that my bed came out of the frame at 4am and I had to wake up my dad to fix it. I have noticed that I am still really tired and seem to have no energy. I just want to rest, and it does not seem to getting any better. I am still in pain, and very short of breath while walking slowly. I did take the dog for a short walk with my dad and had to hold my incision the whole time to move somewhat comfortably. I wonder when life will seem normal again.
07/22/01: Day 27:
I have been really good about documenting my progress daily now. It was very difficult to go back and figure out what happened when so I am keeping on top of it now. I wanted to document that I am still unable to sleep through the night, it is 2:23am as I write this. My mother has been also unable to sleep through the night, and sometimes we are awake at the same times and sit up and talk. Sometimes I also want a snack, and I am always thirsty!
07/23/01: Day 28:
I saw Dr. Marcos this morning. He never really answers any of my questions with definitive information, so I have no idea if what I am experiencing is "normal" or not. I got no sleep last night because of the pain in my back. I wanted some muscle relaxers or something to help me with the pain. He offered me nothing, told me take some motrin. I also told him I was having a pain shooting through my left side that had just started at that moment. He seemed to ignore me and acted like I should not worry about it. On our way out of clinic, we saw him in the hallway and my dad asked him why I was still getting this pain. His response? "You have a pain in your side". "You are going to have pains". Everyone laughed it off, including me because I felt stupid for complaining. By the time I hit the bottom floor I was in tears I had so much pain. I came home and went straight to bed. I seem to be nothing more than an organ donor to the doctor. He does not seem to be very concerned about how I am feeling, he never really has. But he is great with my mom, and I guess that is what is really important. He is definitely protective of her and makes sure she gets great care from his staff. I guess I will just have to deal with the pain, this is certainly a long road to recovery. I cry as I write this.
Over the last 4 months I have experienced a range of different feelings, both mentally and physically. My body has gone through a change. My skin has become more oily and I have had frequent break outs. The appearance of my skin is bumpier.
The pains are different as you go through the healing process. You can feel the stitches underneath the incision. They itch or tend to be irritating. I have also had some pain where my liver is, it feels like a dull aching in my back. It does not appear to be serious; I reported it to Leslie Johnson. It is bothersome though. I may contribute this partially to a new mattress that does not provide a lot of support.
Emotionally, I am different. I feel more anxious, sometimes depressed, and really feel like I am not living life enough. I am not having as much fun, and experiencing an appreciation for all I have. I want to make changes. My mom has a new chance at life, and she is doing very well. I have no regrets at all about my decision to donate my liver. It was difficult, and painful. But worth it every time I think about it, and I would not have changed my mind even if I did know what was going to happen. I know my story sounds really negative and you can hear my frustration. It takes a very strong person to go through all this. I lacked the strength lots of the time. It was all worth it in the end because my Mom is alive and well. What an amazing thing!
Even though we experienced a lot of frustrating and confusing moments, (most which could have been avoided by better communication at Strong) Dr. Marcos did save my mom’s life and I am grateful. The process needs to be more defined, and communication is essential! Hopefully, that will improve. I am looking forward to spending Christmas at home with my parents. I hope this has been helpful, but not too scary. I wish someone could have answered some of my questions about this whole process while I was going through it. I did not proof this at all. I am posting this story unedited because I think that the emotions are real and you will be able to relate!Happy Holidays!