Sum up Lauren’s last surgery


2 years after my daughter Lauren had heart transplant, in January Lauren had her yearly biopsy.  The biopsy came back no rejection, but they found she had  an arteriovenous (AV) fistula  which is an abnormal connection between an artery and a vein. Normally, blood flows from your arteries to your capillaries to your veins. After meeting with a Vascular surgeon, they scheduled surgery to correct the fistula.  Since Lauren’s transplant her blood flows have always been high, but the Dr.’s didn’t seem to concerned to much about it.  The main concern was the body wasn’t rejecting the heart. The surgery was scheduled a couple a weeks ago at Brigham and Women’s Hospital in Boston Ma.  We were told the surgery would be around 2 hours and they were going to admit Lauren in the hospital over night just for observation.

My husband Dean and I were nervous about Lauren having to go through another surgery after everything she has been through, in the back of our minds we knew there are always chances of complications with any surgery.  Not to mention how Lauren felt about another surgery.  The three of us talked and agreed it was going to be a quick surgery, and also Lauren wanted to be able to see some of the wonderful people that helped her get through her life changing experience again.

Every time I go back to Brigham’s I have anxiety, to many memories of when we were living there.  My husband has a wonderful way of keeping me and Lauren calm to get through it.  We are two lucky women to have him in our lives.

We arrived at the hospital 6:00 a.m., Lauren’s surgery was scheduled for 8:oo a.m.  When they took Lauren in, they told my husband they would be in contact with him with updates while we sat in the family room waiting.  After a couple of hours they called and said she was doing good, relief was all we felt.  You see, every time  she  has had surgery there was always complications so in our minds it was always there.  Well, this time was different.  To sum it up, Lauren’s surgery ended up taking 6 hours, not 2.  The original ultrasound showed one fistula, but they found 3.  They were able to fix 2 of them only, Lauren was in surgery to long and they didn’t want to keep her under any longer for safety reasons.  We were shocked to find out she 3.  The surgeon told us her blood pressures did improve enormously.  With all the procedures she had in the past couple of years, we were told they were really not that surprised, but it was something they didn’t expect to have to do. By 6:00p.m. we were able to see Lauren in the recovery room.  We were then told, her room wasn’t ready yet, it would be another couple of hours.  All we kept thinking was, OK it’s over and our daughter is going to be alright.  Big relief.

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So back to waiting.  Give my husband the remote and he’s a happy man.

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Lauren was suppose to stay in the Shapiro Building, but they didn’t have any rooms so they moved to the Towers Building.  I kept thinking Lauren was going to be upset, we never stayed there and she wouldn’t be able to see any familiar faces.  Come to find out it didn’t matter.  Lauren was so sick during the night, throwing up from all the meds she was given.  The room we stayed in was in the Pavilion Suites.  They really upgraded her.  This floor is for celebrities or you have to pay big time to be able to stay there.  Talk about a hospital room.  Imagine this, hardwood floors, cherry trim all around.  The menu could have been from a 5 star restaurant.  She deserved it.  But she didn’t know where she was until the next morning when she woke up.

This is how they served the meals, room service style.  Lauren’s breakfast.

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That morning we told Lauren about what happened during her surgery.  She was shocked to find out she was in surgery for 6 hours and she had 3 fistula’s instead of one.  Lauren did have quite a few visitors from the Shapiro Building that took care of her.  They found out where she was and everyone kept saying “wow, how did you get this floor”.  It made her feel very special and she was able to visit with old friends.

It was a long trip for my husband and I, but the end result was Lauren was doing great now.  Sore but good.  They took great care of her and we were told they are not concerned at this time about the last fistula they could not repair.  Maybe down the road, but not at this point.

It has been two weeks since her surgery, last Friday the three of us got back in the car and  had our appointment with Lauren’s surgeon for a follow-up.  All is good.  Lauren is still sore, but we were told it is normal healing.

Thank you Brigham and Women’s Hospital for taking great care of our daughter again.

With much love

Lynne, Dean & Lauren 1437940979_love_valentines_day_11

The Importance of a Transplant Social Worker


In this article, I want to focus on the importance of your social worker if you are living in a hospital with a life threatening medical condition.

When Lauren was admitted into the hospital, I felt like my world was turned upside down. I was so scared for my daughter.  Looked around the room, so many monitors, machines so clinical and thinking this is my home now.   I know my daughter was scared so I had to keep an upbeat persona to help her feel more at ease.  Nurses were coming in and out, monitors were beeping, IV’s were being administered, so much, too much was happening.

At Brigham & Women’s all the cardiac patients have private rooms, that was a blessing.  There was a couch in the room, so as I sat there with my husband just holding hands, my mind was going in a thousand directions.  I knew he would have to go home in a couple of days to go to work, I had to dig deep to find the strength to figure out how the hell am I going to be able to live in a hospital room with my daughter, in a city I didn’t know, being 87 miles away from home.  We had no idea how long we were going to be there.  Days, weeks, months or a year.  One thing I did know was, I was not leaving my daughter.  We were in this together.  From the outside people saw a different person, on the inside I was crying from fear.

We were meeting so many people, I would take their cards and on the back I would write little notes on them, like hair color, just something so that I could remember who they are.  I didn’t want to be rude when they entered the room, if I couldn’t read their name badges.

There was one person we met that knew I wouldn’t forget her name, it was  Kristen DeVoe, our social worker from the hospital.  Kristen came into the room, introduced herself to us, then told us she was here to help us in anything we needed.  She was not only there for Lauren, but she was there for me also.

Everyday, Kristen would come to our room to check on us, giving us emotional support, asking if we needed anything and I mean anything.  Kristen became a very important confidant in my life.  I found I could talk with her about anything.  She also was a blessing when it came to taking care of medical paperwork, insurance forms basically anything.  More important, when I just needed a hug or talk outside of Lauren’s room, Kristen was their for me.  When Lauren wanted to talk, I would leave the room so she could have her one on one time also.

I wrote to Kristen and asked her if I could write a post about her and her job as a social worker.  Even though we have been out of the hospital for a while now, I can still contact Kristen if I need to.  Kristen’s answered “absolutely”.  A social worker will not be your best friend, but during that time in the hospital, in my mind she was.

I would like to introduce you to,

Kristen DeVoe MSW, LICSW
Clinical Social Worker
Cardiac Transplant and Mechanical Circulatory Support
Brigham and Women’s Hospital

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 Some facts about my role…I’ll include my basic job description first:

· Work as part of a multidisciplinary team of physicians, nurses, dieticians and pharmacists.
· Provide comprehensive social work assessments as part of a pre-transplant or pre-ventricular assist device evaluation.
· Provide ongoing psychosocial and emotional support to patients and families before and after transplant and mechanical circulatory support.
· Facilitate a monthly support group for patients with mechanical circulatory support.
· Offer clinical opinions regarding the candidacy of potential transplant recipients at weekly selection committee meetings.

Boring, I know. So a lot of what I do is help patients and families get through the difficult process of waiting for a transplant. I provide support and counseling for patients before listing, while they are waiting and then after transplant. When I first meet a potential transplant patient I have to get to know them and make sure they have enough social support to get through the process successfully. I help patients manage anxiety and depression and basically serve as a source of support for them emotionally. I love my job. The relationships that I form with patients and families (like you and Lauren) are very important to me and I feel grateful that people allow me to share part of their journey. It truly is a privilege to work with the patients that I get to see and I’m constantly amazed by how much the human spirit can endure without breaking.

Kristen

Kristen DeVoe MSW, LICSW
Clinical Social Worker
Cardiac Transplant and Mechanical Circulatory Support
Brigham and Women’s Hospital

If you are living in a hospital, please take the support of your social worker.  Dr.’s and nurses are very important components in your care, but also remember your social worker is as important also.

This post is dedicated to Kristen DeVoe and all the other social workers out there.

Lynne

Today is the waiting day, Lauren’s biopsy results……….


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Yesterday, Lauren had her heart biopsy.  Off to Boston.  Her last biopsy was 3 months ago all  good.  Lauren had her heart transplant on Dec. 30, 2013. Since the transplant she has had 2 slight rejections, the dr.’s told us that is normal.  Well, it might be normal to have a slight rejection, those are the words you do not want to hear.  They needed to adjust her medication to correct rejection.  The rejections were at the beginning of her journey after transplant, we haven’t had one in a while.  Thank God.

If you read my last post, it explains the biopsy process.  When a body receives a new organ through transplant it will always see it as a foreign organ.  That is why a recipient must always take rejection medication every day.

So anyway, it was a long day yesterday for Lauren.  Biopsy, echo, then a visit to the clinic to talk with the dr.  From what they saw everything looks good.  Her pressures where a little high, but they always have been.  After the biopsy, they send it to the lab and check for rejection.  That process takes 24 hours.  So, by the end of the day we will receive a phone call with the news.  Please, say a prayer…no rejection.

Lynne

The 3 Amigos, song they wrote, while living in Brigham & Women’s Hospital waiting for their heart transplant


I would like to introduce you to 3 amazing people, Lauren and I had the pleasure to meet when we were in the hospital.  Joe is a music teacher here in the Springfield area, so when we met them they were all in Katie’s hospital room writing the most beautiful song.  It is about living in the hospital on  VAD machines.  Joe had his guitar, and Katie and Steve were helping in writing the lyrics.

This song was special to us also, Lauren was living with a VAD for 6 months.

Joe Whalen, Katy Flynn, Steve Disumma

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This picture was taken after all three had their heart transplants.

The smiles, say it all.  Love you guys…and miss you

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Enjoy the song, just a heads up we used to call Brigham & Women’s Hospital the Cardiac Hotel.

Love Lynne

The BI-VAD-LVAD TAH BLUES SONG

Wisdom Teeth are Gone, all is GOOD


This is how Lauren has dental work done now

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Follow up on removal of wisdom teeth

Yesterday we arrived at the hospital at 12:00 p.m., it was a long morning just wondering about this procedure.  When we arrived I really didn’t know what to expect.  Was this going to be in a dental setting like an office within the hospital, that was what I was thinking.  WRONG.

When we found the area we were to be, it was the surgical unit.  OMG, memories.  They brought us to the pre-surgical area.  We knew the drill.  Lauren had to change into the lovely hospital gown, IV was administered, then we had to go over Lauren’s medical history.  Being a new hospital, this took quite awhile.  Procedures she had done, then the med list.

We were told this was their first heart transplant patient they had. ( Made me a little nervous).At one point Lauren was like a show a tell.  Nurses came up to Lauren to ask if they could see the scar from the surgery.  Lauren was a trooper, but I could see she was a tad bit annoyed.

When the surgeon and the anesthesiologist came to talk with us about the procedure, we had to go over Lauren’s history with them.  They were being very cautious about how they could put her to sleep safely.  I had to tell them how certain medications if administered could possibly suppress her breathing which could lead to being on BYPAP.

They left and we could hear them discussing what they should do.  Then they had to look up Lauren’s muscle disease, they never heard of it.  I started to think maybe we should be in Boston, they know everything about Lauren.  But, I really felt they were going to take great precautions to make sure Lauren was safe.  When they returned with their plan, it was something I never expected.  They were going to put a breathing tube in and give her Fentanyl.  Tears started to build.  Breathing tube, breathing tube really.  Lauren was so nervous all she kept saying was I better not wake up with a trac.  They told us this was the safest way to do the surgery.  In the back of my mind, I kept saying to myself, she is just getting teeth extracted.  Could this turn into a life threatening procedure?

After a long discussion, we agreed to go forward.  Lauren was in God’s hands again.  They took her in around 2:00 and told me they would come out to talk with me when it was over.  I was told about 1 hour.  The Dr. finally came out to talk with me around 4:00.  I was so nervous because it to longer than they said.

EVERYTHING WENT GREAT, LAUREN IS IN RECOVERY.

Lauren was discharge and we were home around 5:30.

Lauren’s mouth is sore, but she was able to eat all the ice cream she wanted.

Lynne

Going to the hospital today…….


Lauren is having 3 wisdom teeth removed today.

Lauren needed these teeth removed 2 years ago, but when it was scheduled that was when we received the call for her new heart.  It has been a long process to schedule the extractions.  First we had to get the approval from the transplant team in Boston, then after that when we went to the oral surgeon, with Lauren’s history of anesthesia, he was very hesitant to perform the surgery in his office.  So it was decided, in Lauren’s case the removals will be  preformed in a hospital setting to be on the safe side.

So we are off to Mercy Hospital this morning.  I am so happy we do not have to go to Boston for this.  Last night I had a hard time sleeping, anxiety about going into a hospital setting again.  I just keep telling myself, nothing is going to go wrong and we will be home later today.  Positive thinking.

This is the last surgical procedure Lauren needs.

Lynne