Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff


makalajohnson (@makala johnson) published a blog post · October 21st, 2011

A Family Member's Point of View

By Lindsay Engelstad

I was not a patient at the Mayo Clinic Hospital, but my mother was. Prior to her going into the hospital, I always hear people say “Go to the Mayo Clinic it is the best place to be if you are sick”. Yeah right, it is a hospital and all hospitals are the same right? WRONG. The Mayo Clinic Hospital is not just a hospital, it is a place where the employees love to work, and they always have a smile on their face, and care about their patients.

Lindsay EngelstadLet me give you a background on my mom, in 1973 she was diagnosed with advanced Hodgkin’s and at that time chemotherapy was just at the beginning stages of clinical trials. So she underwent radiation therapy. That radiation therapy gave her 35+ more years in life. Since she had Hodgkin’s, my mom paid extremely close attention to her health, she worked out 5 days a week, ate healthy, etc. She was completely in-sync with her body. 10 years ago she and my dad moved to California due to a job relocation for my dad, so she had to find a new set of doctors. In the past 3 years, my mom was having some issues; being winded going up a flight of stairs, taking long naps in the afternoon, stumbling over her words, and repeating herself. None of the doctors in California could figure out what was wrong with her, so I suggested that she come back to Arizona and go to her Doctors that she has gone to for 30+ years. Fortunately, her doctors were able to find out was wrong with her, she had fluid built up around her lungs, and the pericardium around her heart had calcified. This was all due to the radiation damage from the Hodgkin’s back in the 70s. So a surgery was set up to strip the pericardium.

My mother had her surgery scheduled on October 6, 2010 at another hospital in Scottsdale, Arizona. The initial surgery went okay, however the next day complications arose from the pericardium strip. She had a bypass and a balloon pump inserted into her body to help assist her heart. Once that happened, the hospital where she was at said that she has exceeded their care and mentioned Mayo Clinic. That is where we, my family and I, met Dr. Arabia for the first time. He told us she only had a 50/50 chance of survival to stabilize her before she could be transferred to Mayo. Once she was stable enough to move, we were then told by Dr. Arabia that she had a 50/50 chance of surviving the trip to the Mayo Clinic Hospital. The first nurse we met that night was nice, but to the point and let us know what was going on with her, she was referred as Mother Hubbard. She was with my mom through the night and didn’t leave her side. That first night, was one of the longest nights in my life not knowing if she would make it through until the morning, but what was to come the next few days. The next nurse in the morning was Carrie. I have never met a nurse with so much compassion and love for a patient. She explained everything that was going on that first morning and to let us know that the Critical Care Unit has a 1.5 nurse to patient ratio. All the nurses at the Mayo Clinic are approachable and care about each and every one of their patients. The feeling there is the feeling of family, after all the nurses are involved in a very intimate part of a patient’s and their family’s lives.

My mom had multiple heart surgeries from October 7 until she was closed up on October 15th, 2010. The outcome of the surgeries is that she needed bi-ventricular assist devices (bi-vads) installed into her body to regulate her heart. Without the bi-vads, she would not be able to live. She regained consciousness and had to learn about what happen to her and that she could recover from this, but it will take a lot of work and the goal was to get her on the heart transplant list. My mother worked her hardest with walks around the pod of rooms, leg lifts in her bed and other physical therapy. In November she was moved from the Critical Care Unit, to the rehabilitation floor. That visit did not last long as she was rushed back down to the CCU with oxygen level problems. After a day or two, an x-ray showed that she had fluid built up around her lungs again, and a chest tube was inserted into her lungs to drain. However, the fluid that was there was pure blood. She had to have surgery again to insert more tubes into her lungs, but my mom was able to overcome that hurdle. However her lungs were in horrible condition from the radiation back in the 70s and she needed assistance on breathing. A tracheotomy was performed and she was put on a ventilator.

She remained in the CCU working with physically therapy everyday and working on getting her lungs better and her strength up to hopefully get on the heart transplant list. In January 2011, she developed shingles and was confined to her room for about 3 weeks until everything was scabbed over and she got the clear from her doctor to start walking again. That was my mom, she was a fighter and she got over another hurdle. For the next few weeks she worked on walking and occupational therapy to help get her strong. She also started trachea trials, where she would not be on the ventilator and breathe on her own. It is a good form of therapy and for to have the chance to wean herself of the vent. Also she started walking without the vent as well.

In February, she was able to get dressed for the first time in 5 months. She finally felt like a human being and after being in the hospital for over 5 months, she did not have one bed sore. Seeing her so happy that day reminded me not to take anything in life for granted, because in an instant, it can be taken away.

In March 2011, the doctors evaluated my mom to see how her lungs were healing and they weren’t getting any better. They were in poor health from the radiation and not responding well to trachea trials. She would go about 3 days without the ventilator and her C02 levels would rise to dangerous levels and would need to be placed back onto the ventilator to assist with her breathing. So a decision needed to be made.

On March 15, 2011, my mother made the most selfless decision that a person has to ever make and she chose to end life support knowing that she would not get any better than the current state she was in. That day was a somber one, but you could see that she was at peace and knowing that she made her decision. The Mayo Clinic made that day as bearable as they could for me, my father, my brother, family, and close friends. I could not ask for a better place for my mom to pass away in peace. After she passed away, I turned to look at everyone who was there and outside of her door, the pod was packed with dozens of people who worked for the Mayo Clinic that have met my mom within those 6 months. The love that was felt at that moment was surreal and overwhelming.

I can’t thank enough to all the doctors, nurses, and other support staff with everything they did for my mom in those six months. I feel as though they are a part of my family forever and will never forget the love and compassion that each one of them gave not only to my mother, but to us as well. My mom overcame many hurdles in her stay at the Mayo Clinic, but the staff was there to keep her spirits up and to give her the motivation to keep on going as long as she could. The Mayo Clinic cares about their patients and wants to hear what the patient thinks and do what is best for the patient. I think if she didn’t have that type of support, she would have not made it as far as she did.

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Arabia Arizona Breathing Hodgkin's life support Lindsay Engelstad pericardium radiation Therapy ventilator

 

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