April is Donate Life Month


donatelifelogo_400x400

http://www.donatelife.net

Lauren and I went to present the City Of Chicopee Ma.USA at the mayor’s office with the official Donate Life flag to be proudly hung in the center for the month of April.  It is such an honor that our city will help in recognizing the importance of being awareness of Donate Life.

During the month of April, Lauren will be promoting and explaining why you should become an organ donor.  On April 5th, Lauren will be featured on Mass Appeal TV show,(set your DVR), and also she will be on the Bax & O’Brien radio show…date to come.

“Everyday I thank God for the person that decided to make that decision to become a donor, otherwise I am not sure if Lauren would be here with us today”.  

aviary_1447147791915

Please click on the link  today to sign up, become a super hero

http://www.donatelife.net

National Donate Life Month (NDLM) was instituted by Donate Life America and its partnering organizations in 2003. Celebrated in April each year, NDLM features an entire month of local, regional and national activities to help encourage Americans to register as organ, eye and tissue donors and to celebrate those that have saved lives through the gift of donation.

2016 National Donate Life Month
For the 2016 National Donate Life Month artwork, Donate Life America was inspired by the mighty sunflower. It’s difficult to overlook their stature and bright color. A sunflower’s orangey yellow hue evokes feelings of optimism, warmth and cheerfulness. Often found in fields, they stand confident, sheltering each other and following the light throughout their lives.

Look a little closer and you will notice that one sunflower’s face contains as many as 2,000 seeds. With these, it has the potential to create an entirely new field of flowers. We each have a similar potential to give life when we register our decision to become an organ, eye and tissue donor. One organ donor can save and heal the lives of up to eight people through organ donation and countless others through tissue donation. A chance at new life gives beyond the recipient. Just as a new field of sunflowers brings comfort and happiness to those that come into contact with it, so does a loved one’s gift of donation to his or her family and friends.

Through life and its struggles, the sunflower reminds us to lean on each other and embrace the life-giving aspects of our lives. It reminds us to live with joy, to focus on the light even during difficult times, and to give freely to save the lives of others when we are gone.

We wish you a Happy National Donation Life Month. Thank you for your efforts in educating and registering others as organ, eye and tissue donors!

http://www.donatelife.net

Lynne 1437940979_love_valentines_day_11

Advertisements

Lauren, one of the Leading Ladies for the Go Red For Women


Lauren was selected to become one of the 2016 Go Red Leading Ladies of Western Ma.  Lauren is seated in the front row center.  When Lauren was asked she said “It is an honor to be asked and help the American Heart Association in the Go Red campaign to help bring awareness of heart disease in women”.

20160219_092423

Yes I can say, I am a very proud mother.

Also, not only being in the campaign poster, Lauren has been asked to be the guest speaker at the Go Red For Women Luncheon.  At the luncheon, before Lauren speaks, there is going to be a video shown of Lauren speaking about what has brought her to be part of this organization.  The film crew came here to our home.

20160203_175249

20160203_181522

20160203_181703

Lauren was very nervous, but did an outstanding job.  She actually had the director and the film crew in tears talking about her story, her life experiences.  Oh hell, she had me in tears also.  I cannot what to see the finished video.

I am so proud of the women Lauren has become, and is using her life experiences to help others.

Below is information about the Go Red For Women Luncheon, please show your support for this wonderful organization.

Where:
Log Cabin
500 East Hampton Road
Holyoke, Massachusetts, 01040     
Link to Map
When:
Starts:Fri, 26 Feb 2016 11:00:00 AM
Ends:Fri, 26 Feb 2016 2:00:00 PM

The western Massachusetts Go Red For Women Luncheon is the American Heart Association’s signature event! Join us for a delicious heart healthy lunch while learning about women’s heart health. The day will include survivor speakers, health screenings, and a keynote speaker. The Go Red For Women movement is dedicated to making an impact in the community through education and fund raising to fight the number one killer of women, heart disease.

To register visit http://www.wmassgored.ahaevents.org

Lynne1437940979_love_valentines_day_11

Meaning of New Heart=New Beginnings


New Heart = New Beginnings

I started this site after Lauren had her heart transplant and we were home.  I thought the title was appropriate.  New Heart is self explanatory, but New Beginnings takes on it’s own meaning.  I never knew what life had in store for us.  All I knew was we had a new beginning in life.

It has been a little over two years since Lauren received her new heart.  Medically Lauren is doing fantastic.  We have had a couple of bumps in the road, but Lauren being Lauren, she has tackled the obstacles and is moving forward in life.  I am so proud of the strength she has and is an inspiration to me and anyone she comes in contact with.  Lauren is now very active in the American Heart Go Red For Women Association and also Donate Life Organization.  Going out with friends, going to the gym, just living life.

aviary_1447147791915

In my next post I have some very exciting news about what Lauren has been up to …….

In the past two years, New Beginnings has had it’s ups and downs.   When Lauren was in the hospital, as a parent you experienced and have seen things a parent should never have to go through, but when you don’t have a choice, you just do what you need to do.

For the past couple of years, this is what I would see in my mind:

20160212_123528

I was always afraid something would happen and we would end up back in the hospital.  Always afraid the heart would reject, then having to start the process all over again.  Hearing the sounds of the machines, nurses in the room all the time, sleeping on whatever is available.  A part of me always lived in fear, for my daughter and myself.  Not to mention, my husband who would travel every weekend to be with us.

childrens-hospital-2013-002

At the beginning, those feeling are so understandable.   When a parent see’s their child in this condition, words cannot describe an emotion you feel.  You just pray that this nightmare will be over soon and the two of you will be walking out the hospital doors soon.

Well, it’s been two years now and I can honestly say this vision is finally fading away.  Yes it took little over two years for me to believe that, that is our past.

I am writing this to release feeling that I have been harboring within me.  You can say this is my release of memories that have given me nightmare, anxiety and the past.  I need to put the past in the past and life for the future.

To all my friends that I have pushed aside, I am sorry.  My breaking point was when Dean, Lauren and I took a trip to Florida for my sister’s birthday.  My mother was there and I can say we got into a conversation about Lauren and how I have been feeling and acting.  She told me I probably need counseling, to help me.  I got upset and said I didn’t.  Well, after that conversation, I did a lot of soul searching and my mother was right.  I didn’t get counseling, I thought long and hard about how I have been acting.  I had to realize Lauren was OK.  She wasn’t going to be rushed to the hospital.  Lauren is 25 years old and she doesn’t need her mother worrying all the time about her.  Lauren needs to be 25.

Since realizing Lauren is OK, I have been able to think about my life.  I need to reconnect to friends I haven spoken with in quite a while.  Need to focus on my husband more.  Lauren is 25, so my husband and I can start doing more things together as a couple.

With this say, Lynne is moving forward, thanks mom for opening my eyes

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.

20160114_184118

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

20160114_181050.jpg

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.

20160115_110326.jpg

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

Biopsy results are in


NO REJECTION

News we were praying for.

I wish I could say it smooth sailing now, but when Lauren was in surgery having her biopsy the Dr. found that Lauren has an arteriovenous fistula in her groin area.  When you hear the Dr. trying to explain to you what it is, all I heard was Lauren has something wrong and she might need surgery.  I went numb.   At this point, we spoke with her transplant team yesterday, yes they gave us the great news no rejection, but they also told us the they are contacting a vascular surgeon.  Our first appointment they told us will probably be they will need to do an ultra sound  to see the extent of the fistula.  Then we will know more.  To try to explain what I am talking about:

An arteriovenous (AV) fistula is an abnormal connection between an artery and a vein. Normally, blood flows from your arteries to your capillaries to your veins. Nutrients and oxygen in your blood travel from your capillaries to tissues in your body.

With an arteriovenous fistula, blood flows directly from an artery into a vein, bypassing some capillaries. When this happens, tissues below the bypassed capillaries receive a diminished blood supply.

Causes of arteriovenous fistulas include:  This is how Lauren’s biopsy procedure is done.

Cardiac catheterization. An arteriovenous fistula may develop as a complication of a procedure called cardiac catheterization. During cardiac catheterization, a long, thin tube called a catheter is inserted in an artery or vein in your groin, neck or arm and threaded through your blood vessels to your heart.

If the needle used in the catheterization crosses an artery and vein during your procedure, and the artery is widened (dilated), this can create an arteriovenous fistula. This rarely happens.

Catheterization procedure
The patient lies face up on a table during the catheterization procedure, and is connected to a cardiac monitor . The insertion site is numbed with a local anesthetic, and access to the vein or artery is obtained using a needle. A sheath, a rigid plastic tube that facilitates insertion of catheters and infusion of drugs, is placed in the puncture site. Under fluoroscopic guidance, a guide-wire (a thin wire that guides the catheter insertion) is threaded through a brachial or femoral artery to the heart. The catheter, a flexible or preshaped tube approximately 32–43 in (80–110 cm) long, is then inserted over the wire and threaded to the arterial side of the heart. The patient may experience pressure as the catheter is threaded into the heart. The contrast agent, or dye, used for imaging is then injected so that the physician can view the heart and surrounding vessels. The patient may experience a hot, flushed feeling or slight nausea following injection of the contrast medium. Depending on the type of catheterization (left or right heart) and the area being imaged, different catheters with various shapes and ends are used.

F3.large Hope this picture helps explain.

The procedure usually lasts about two or three hours. If further intervention is necessary, an angioplasty, stent implantation, or other procedure can be performed. At the end of the catheterization, the catheter and sheath are removed, and the puncture site is closed using a sealing device or manual compression to stop the bleeding. One commonly used sealing device is called Perclose, which allows the doctor to sew up the hole in the groin. Other devices use collagen seals to close the hole in the femoral artery.

The femoral blood vessels are important conduits for blood traveling between the heart and lower limb. The femoral artery carries blood to the lower limb while the femoral vein carries blood back to the heart. These structures are common sites for conditions that cause narrowing or blockage of the blood vessels.

This past week-end, I kinda lost it.  The thought of something wrong, living in the hospital again was very overwhelming.  I needed to get my anger out and thank god for my family, I took it out on them.  Mom, Donna and Laureen sorry, but thank you.  Your family is the only ones that you can let loose and know they are there for you.

Will post when we hear more.

Lynne1437940979_love_valentines_day_11

Lauren’s yearly heart biopsy


So tomorrow we are venturing off to Brigham & Women’s Hospital in Boston Ma. for Lauren’s yearly biopsy.  It will be a two day event.  On Thursday first appointment is her echo, then a clinic visit and finally a stress test.  Day two –  heart biopsy.  Being a two day hospital visit, we are staying over night at a local hotel.  During the visit Lauren will not be in the hospital.  Just day appointments.  So after her appointments we plan on visiting some of the wonderful people that helped us during our time there.  Like seeing old friends.

Wish us well, that everything goes well.  Let’s pray for a negative test result, meaning no rejection.

Lynne1437940979_love_valentines_day_11

Giving Thanks


On this post I would like to give thanks for being home with my family.  Something that so many people take for granted.  The little things in life.

  • Waking up in your own bed.
  • Sitting in your pajamas and having that first cup of coffee.
  • If you are hungry, going into the kitchen to make something to eat.
  • Take a shower then be able to pick out whatever you would like to wear for the day.

These are just a couple of examples of things that I will never take for granted again in my life.

When I was living in the hospital with my daughter Lauren, I could not do that.  When I would wake up in the morning (from a disturbed sleep from all the nurses and Dr.’s coming in and out all night), from my couch that was my bed, I had to go into my suitcase and pick out what outfit to wear.  Slim pickings, so many days I would have to wear the same cloths.  Depending on what was going on for that day, a shower would be in question.  So a lot of the times it meant a sponge bath to make myself feel human and presentable.  Then it was “I need a coffee”.  Get money.  Walk down to the cafeteria, make my coffee wait in a long line to pay, now I can sit with all the hassle and bustle of all the hospital employees going on about their day ahead.  So relaxing, NOT.  Living in a hospital is very expensive, so I would pass on breakfast and wait until around 2p.m. to eat.    Most of the time I would snack on crackers, that was on the hospital floor. To be able to have a meal, it meant going back to the cafeteria, walk around to see what they were serving.  Most of the time I would opt for a salad, it was a make your own.  When you got and pay they would weigh it, so I would get a salad and a drink we are looking at about $10.00.

Theses memories are so real.  I will never forget that way of life.  This went on for almost a year and a half.  As I am writing this, so so many people are living that life right now.  Family members that are living in the hospital with their loved ones.  Someone is waking up, packing up their bedding and probably saying to themselves,” I can’t do this another day”.  Then you look at your loved one laying in the hospital bed, hooked up to machines and you say to yourself “Yes I can”.

To everyone living in a hospital, you are not alone.  I feel your pain, your frustration.  I was blessed and I am home now with my daughter.  My prayers are going out to you for the strength you need to go one more day. One day at a time.

If you need to vent to talk, please contact me.  I can relate to your situation.

lrobitaillecld@aol.com

Lynne  1437940979_love_valentines_day_11

Spoke to soon yesterday, problems with medication


Yesterday, was how can I say was stressful.  Apparently the medication that was given to Lauren for her pneumonia did have an interaction with her other meds.  Lauren was very sick during the night, throwing up after taking the second dose.  There is a big lesson here.

I let me guard down.  Over the years I have learned, Dr’s. are not always right.  The quote “medicine is a science”, keeps popping into my head.  What works for one person doesn’t always work for the next person.  Everyone is different.  Yes, you need to trust your Dr., but there is nothing wrong with questioning their decision.  Before Lauren took the antibiotic that was subscribed to her, I should have done a little more homework on the medication first.  After doing so, I found that it interacts with a couple of her medications that she is presently on.  One being one of her rejection meds.  Not good.

These are the medications that Lauren takes every day, so keeping track of them could be like a full-time job.  When a new medication is introduced into the list, homework is a must.

DSCN2776

Lauren has Dr.’s here in Chicopee and also in Boston.  So yesterday, we had them do a conference call to each other to decide what is the best solution on how combat the right medication to clear up the pneumonia.  The whole time in the back of my mind I kept saying (please, no admission in the hospital).   The decision was made, they prescribed her prednisone. Prednisone is a corticosteroid. It prevents the release of substances in the body that cause inflammation. It also suppresses the immune system.    Lauren was on that medication at the beginning after her transplant, so I knew that it would not interact with any of her other meds.  Prednisone is a very strong steroid.  They only prescribed it for 3 day.  It has some strong side effects.  One to mention is shakes.  So the sooner Lauren is done with it the better.

Now this is important, I need to share.

When we were speaking with her Dr. here in Chicopee yesterday morning, explaining how Lauren felt, and after I looked up interaction with the medication they prescribed this is what the Dr. said to us.  “What pharmacy did you go to, it should have come up in their system with all the medication you take”.  It was told to us, it is a two point system.  First one is what a Dr. prescribes, then the pharmacist is the second to check if this should be prescribed.  I guess it is a good system, but before taking any new medication, you should personally question everything.  Inside I feel like I let my daughter down.  Between the two of us, this will never happen again, God willing.

When you are prescribed any type of medication from your Dr., question it.  What works for one person may not work for you.  We are all individuals, no two people are alike.  Here’s another quick tip.  When you go to the Dr’s., they are on a time schedule by law.  For an office appointments they are only scheduled 15 minutes per patient.  That is what the insurance companies allow.  Don’t let a Dr. rush you if you have questions.  The insurance companies dictate to the medical community to some point how to run their practice.  Don’t let them rush you out if you feel confused or if you have questions.  Remember you are the important person in that room.  It’s all about you. Get the right facts and information.

Lynne  1437940979_love_valentines_day_11

Lauren has Pneumonia, no hospital stay


The last couple of weeks, Lauren has had a cough that was not getting any better.  Every time Lauren doesn’t feel good, I go into panic mode.  Flash backs are so real.  These feeling are so real.  Not sure if I could live through this image again.  Lauren is not in the hospital, but this is what I see in my mind, when I think about Lauren when she doesn’t feel well.

mom 1226

Lauren’s immune system is compromised from the heart transplant.  She needs to be very careful of any sickness that is going around.  With all the sanitation and Lysol I use in our house, I cannot kill all the germs.  Impossible to say the least.  Life is around us.

Many germs can cause pneumonia. The most common are bacteria and viruses in the air we breathe. Your body usually prevents these germs from infecting your lungs. But sometimes these germs can overpower your immune system, even if your health is generally good.

On Monday, Lauren went to her doctor.  After her exam, they sent her to the hospital for a chest X-ray.  The X-ray showed she has pneumonia.  Thank the Lord, the Dr.’s said we caught it early.  No hospital stay, they put Lauren on Zithromax Z-Pak.  So the next week, I am praying the medication works and takes care of her lungs.

With cold and flu season here, please be mindful of your surroundings.  Germs spread everywhere.

Lynne1437940979_love_valentines_day_11