On 11/01/02 my 22 year old daughter, Tricia, was diagnosed with Primary Pulmonary Hypertension. For more than one year I suspected something was very wrong with her. Last fall, I even escorted her to the doctors office and told them that I did not believe this was asthma (I have other children with asthma), depression or anxiety.

 

I even conceded that she may well have had depression and anxiety but in my heart I knew that this was not the root of her symptoms. In a two year period I watched a healthy, active mother of three young children deteriorate into a person who could barely get out of bed and when she did, she was unable to walk without stopping constantly. She fainted regularly, vomited daily, lost a considerable amount of weight, was very weak and pale and her voice had changed into a "little voice."

 

Her inability to care for herself or her children, actually caused great discord between the two of us. I seemed unable to convince her that she needed to find a doctor who would listen.

 

I know her story is much like many of yours. While I understand that this disease is insidious and not easily diagnosed, I am appalled by the apathy in the medical community regarding the way my daughter was treated. The staff at her doctors office were disinterested and found no urgency in providing her with care. Last year, she was finally put on the Holter monitor and the results were acceptable. Even so, she was referred to a cardiologist who's staff would not schedule her for an appointment because they wanted to know why she had a referral. Thus began this back and forth of calling the two offices--til she finally decided it wasn't worth all the aggravation. She figured, "It must really be in my head."

 

Fastforward to 10/16/02. We were on vacation in Pennsylvania and Tricia was here in Phoenix. Her friend took her to the hospital, sure that they would admit her. She had severe edema, shortness of breath, exhaustion, and an overall feeling of malaise. After a chest xray and a sonogram checking for blood clots, the doctor said they could find no reason for the swellling, and again she was sent home--first being told that this was an emergency room and they could only treat one symptom.

 

During the next 15 days she worsened. Her primary care doctors staff would not schedule her, saying her insurance was inactive; the clinic she was told to go to said that they couln't see her and our local DES office let her sit in their waiting room for 7 hours while she attempted to reinstate her insurance.

 

There is more to the story, but I think you all have the picture. Finally on October 26th, we forced our way into her apartment and made her and the kids come with us. I spent the next few days with her, observing her and begging her to let me take her back to the hospital. She was swollen from the chest to her toes, gasping for breath and sleeping all the time. She knew she needed to go back, but she was giving up. She thought no one believed she was sick.

 

I kept telling her that I believed her and that I would take her to all the hopitals in Phoenix until someone gave us an answer. The night before we went in, we were up most of the night laughing and crying at her swollen abdomen, legs and feet. We joked that it looked like someone was blowing her up. She fell asleep while I held her hand and told her how I loved her and that we were going to find out what was wrong.

 

At 1130am on Thursday 10/31 I took her back to the same hospital(her idea, not mine). She told them she had swollen legs. I went back up to the desk and said, "Swollen legs! Do you think I would bring her here because her legs are a little swollen?" I continued with this list of symptoms and was interrupted by the nurse. Within moments she was seen. They asked her to describe her symptoms, and when she could not do so, I did. Within an hour she was admitted. By midnight, that horrible guess at what this might be surfaced. Primary Pulmonary Hypertension.

It is hard to believe that it is more than two months since Tricia was diagnosed with PPH. Our world has been turned upside down.

 

Tricia celebrated her 23rd birthday & we had a lovely holiday season. This year, more than any other, we all seemed to appreciate the simple pleasures of life. Just being gives reason to celebrate.

 

So much seems to be up in the air. I am truly grateful for the people that have been there for us. My parents & sisters have been such a help. My extended family(cousins & freinds) have offered countless support & many kind words. The school & my work have offered financial & emotional support. The simple kindness of others gives cause to celebrate.

 

Getting a diagnosis was such a long, drawn out process that zapped Tricia of so much of her strength. She has struggled with depression for so long that it has taken the fight out of her. Right now we are focused on getting her as physically & emotionally healthy as possible so that she can live a full, meaningful life.

 

When she was diagnosed I explained to my 13 year old daughter, Katy, how very sick her big sister is. Full of emotion, I told her that her sister is 1 in a million. When she gets sick she does it in a big way & goes & picks some rare, incurable disease. We both laughed & cried.

 

I am convinced that you do not know how good you have it until something so bad happens. I have had 40 years of good health & five healthy children. Last year, some bumps were put in the road to make sure I wasn't dozing. My 15 year old son, Kevin, fractured his skull & it was a miracle that he survived with minimal side effects. Now my precious girl is in for the fight of her life. She has an army behind her.

Tricia was in hospital last week for right heart strain and edema. The doc ordered an echo and ventilation profusion scan. She was released after 24 hours and told to take it easy. Apparently she is over doing it.

 

He mentioned the "F" (flolan) word again. Tricia is so adamant that she can't be on it. I have tried to have her read posts on the website so she'd see that many people have had good results with it. I can't imagine what she must be feeling--

 

Well, she was not put on flolan. Doctor said we could keep watching her and that she needs to accept it might have to be in the future. I think he wants her to realize it may be a necessity. He also told her that if he thought it was urgent, that he would insist. It is so hard being on the sidelines. Of course I want her to do EVERYTHING.

 

I spoke to several of the PH friends and they have been very encouraging. The caring and compassion is overwhelming. There are so many wonderful people here. All of us hurting because of PH, but doing what we can to live full lives.

 

We followed up with the doc today. The echo showed PAP of 90. I am so disappointed. Just this week so many folks had talked about improvement in sypmtoms, but not pressures. Tricia was 106 in hospital on 11/01/02. I had hoped to see a significant change. The changes, improvements, have been very subtle. She hasn't fainted since we came home, has only vomited a few times, isn't so swollen and seems to be in better spirits.

 

In the hospital in November we talked about what a relief it was to have a reason for all these symptoms. Even though the news was not good, it was GOOD to know that there was a real reason for her inablity to take care of herself and the kids and for her feeling so lousy.

Yesterday was my birthday...and a fellow PH'r sent me an ecard. It was a day of pleasant surprises with my friend at work giving me a sausage McMuffin for breakfast and a shared gift of The Sopranos Family Cookbook from several work buddies. Then my girl, Tricia, took the bus to my work, first stopping at the flower shop to hand pick a bouquet for her mom, and then treated me to lunch. It really took everything out of her. I was so touched. The nicest part was when she said, "Oh, Mom, I can't even do something for you without you thinking of me" when she saw that I had stopped and picked up her favorite flowers, tulips. It is so nice to be appreciated.

 

And there were more pleasantries that day. My mom stopped by with a gift, and my three sisters called to say Happy Birthday. My grandson, Nicholas, greeted me at the door, telling me I couldn't come in til the surprise was ready. So everyone worked together on Nicky's surprise...handmade cards, balloons, and a cake baked by Aunt Katy.

 

Drew (my husband) came home, we indulged in the cake and went out and had a light meal. It was truly a special day and a reminder that we all have reason to celebrate.

I am so excited to try the new diary system. Things have settled down as far as Tricia and her illness. She has more good days than she used to and she just rented a house nearby and is going to see if she can regain a little independence for herself and the children. I am a little apprehensive, but it is good to see her motivated. She has lived in our home since last Oct and in our family, the entire extended family, has joined forces and given the kids as much stability as we could given their moms physical condition. Even if she finds she needs to come back to our home, it is good to see her get a chance to try. It has been a very rough year for us. My husband moved out in April and I have been devasted. I am overwhelmed with confusion and grief and horrified that something like this would happen when Tricia is so ill and so in need of everyone working together. Just practiciing what I learned as a child. Go one day at a time and keep hope in your heart. The serenity prayer has been my favorite prayer as we face many tough issues in our life. It's not so much how much hardship we have to handle but how we handle it. I haven't been exactly graceful. Just working through it as we go. I am reminded daily of some words from Tricia when she was in the hospital last fall. "Dear Dad, Go home with a clear conscience and remember I love you and you have lots of good stuff in your life." Amazing how a young woman clinging to life can see so clearly how precious it is. Let us all be reminded that we have lots of good stuff in our life. My hope is that we can appreciate them now and not take them for granted.

Today is Thanksgiving. 

 

It has been 12 days since my son, Matthew, died. I feel like this is just some horrible nightmare and I want someone to wake me up.

 

I have spent the last year grieving. I have grieved for the loss of Tricia's health and for the loss of my marriage. I have grieved for the loss of hopes and dreams that were in the works my entire life.

 

Now Mattie is gone and it seems a cruel twist of fate that as I struggled to come to terms with PH in our lives and my husband gone, that my beautiful 22 year old boy is not here. I am so very angry and confused. 

 

My children, Tricia, Matthew, Andrew, Kevin & Katy are the "good stuff" in my life. I have nurtured and protected them, loved them unconditionally and thanked God for allowing me to be thier mom. I have felt so blessed.

 

Right now, I feel robbed. I feel cheated. I am confused and anquished and all I know to do is to get up and put one foot in front of the other.

 

Matthew lived life to the fullest. He moved as if there was no time to do all he wanted to do. He worked hard and he played hard. He surrounded himself with good friends and he had a beautiful, gentle girl in his life. He was devoted to his daughter, Hailey and he was a loyal son. Having fun was so important to him. If something needed to be done, Matt just did it. He had so many dreams and he had a plan and he was living out his plan. He was so excited about his life and the future and just wanted to fulfill his dreams. He lived his life as if he had forever. 

 

Last year when Tricia was diagnosed with PH Matt could not even believe that Tricia was so sick and that her very life was at risk. He offered me comfort and he learned everything he could about PH. He felt very strongly that the doctors should have put her on Flolan and he did not hesitate to voice his opinion. 

 

I miss him so much. I miss him telling me he is too busy to come over. I miss him calling me day or night just to share with me. I miss him stopping by to pick up his mail, borrow something or grab some food. I miss his smile. I miss him putting his arm around me and saying "I love you Mom." 

 

I miss his voice, his laugh, his cockiness, his determination, his drive, his ambition, his ability to light up a room. The list is endless. I love him so.

It has been a tough few weeks.

 

I feel somewhat detached from everything, as if I am only dreaming. Matthew died 22 days ago. Nothing "feels" right. Nothing "tastes" right. Nothing is right.

 

My kids are in such pain, especially Tricia. She has struggled with PH for just over a year....done everything she could do to deny it's interference in her life. In October she had a second bout with right heart failure, complicated by liver failure with her liver enzymes 20X normal level.

 

Then she started to look and feel better and was out of the ICU, then the hospital, within 15 days. 

 

We had planned a trip to New York for a cousins wedding. The doc said she should not go. But that Tricia is strongwilled and she called Delta and set up a flight and proceded to go to her doctors one week after leaving the hospital. She told him "I really want/NEED to go." 

 

He was quite reluctant, but then proceeded to direct his staff to make arrangements for O2 for Tricia while we were in NY. 

 

I was very uncertain about us taking this trip, but jumped right in, took 14 year old Katy out of school, said goodbye to Matt, Andrew and Kevin (my beautiful boys) and off we went.

 

IT was so RIGHT. Tricia got to feel "normal" for a week. We got to spend time with extended family, relax at a hotel, enjoy a great wedding celebration and spend a day in NYC on the circle line tour of the city from the river and then see the hustle and bustle of Times Square at night. 

 

We got home to Phoenix late Wednesday and we were all exhilarated from our excursion. Matt called me Thursday to check in, knowing I had just gotten home. It was just like him, always touching base with me.

 

We made Thanksgiving plans, he complained about lack of money and we talked about school and work. He told me his plans for the weekend and how busy he was. He was always busy. Had been working full time since he was 16 and was in his 3rd semester of college at Scottsdale Community College (SCC). 

 

It was so good to talk to him. Little did I know, it would be the very last time. As always, I told him I loved him. And he, as always, mumbled back, "I love you, too, MOM."

Remember the smiles............. 

 

Every day I see Matthew's smiling face. I can see 22 years of smiles and charms and playfullness. It is so good to have these great memories.

 

A family friend sent me this poem. It has helped me as I grieve the loss of my beautiful boy. I would like to share it with all of you.

 

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Gods Lent Child

 

"I'll lend you for a little time a child of Mine", He said.

 

For you to love the while he lives and mourn for when he's dead."

 

"It may be six, or seven years, or twenty-two or three,

 

But will you, 'til I call him back, take care of him for me?"

 

"He'll bring his charms to gladden you, and should his stay be brief,

 

You'll have his lovely memories, as solace for your grief."

 

"I cannot promise he will stay, since all from earth return,

 

But there are lessons taught down there I want this child to learn."

 

"I've looked the wide world over, in search for teachers true,

 

And from the throngs that crowd life's lane, I have selected you."

 

"Now, will you give him all your love, nor think the labor vain,

 

Nor hate me when I come to call, to take him back again?"

 

"I fancied that I heard them say, 'Dear Lord, Thy will be done,'

 

For all the joy the child shall bring the risk of grief we'll run."

 

"We'll shelter him with tenderness, we'll love him while we may,

 

And for the happiness we've known, forever grateful stay."

 

"But should the angels call for him much sooner than we've planned,

 

We'll brave the bitter grief that comes and try to understand." 

 

By Florence Correa

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Please visit the Notice for Matthew McCoy Dorrell.

 

Then you, too, can see his smiling face. 

"One word frees us of all the weight and pain of life; that word is love." Sophocles

 

When I was a teen, my mother said that when she had me she thought how could she ever love another child the way she loved me? The power of her feeling for me alarmed her when she was expecting my sister just 11 months after my birth. And then she knew. When you love you keep loving and the more you love, the more love you have to share and there is no end to love. 

 

I have been profoundly blessed...as a daughter, a sister, a mother, grandmother, friend & confidante. I know the power of love. I know how it feels to love and be loved and it is WONDERFUL. 

 

"If we make our goal to live a life of compassion and unconditional love, then the world will indeed become a garden where all kinds of flowers can bloom and grow." 

Elizabeth Kubler-Ross

Today is Tricia's 24th birthday.

 

Trica has been living with PH for several years now & it has been just over a year since she was diagnosed. The past few days she has been busying herself with preparing for Christmas and making sure she finds just the right gift.

 

I am having a birthday celebration for her at 1pm today. I hope she will be rested so that she can enjoy the party. Her little boy, Nicholas, told me I could give her a car and some new jewlery. He is very pleased it's mommy's birthday.

 

It is a bittersweet day for us. Tricia and Matt are two peas in a pod & she feels lost without him. Many days, the grief is crippling, & just getting up is a struggle.

 

When your cherished child is no longer here, & your other precious child is so sick, all is not okay in the world. At least, not in your world. 

 

Today I would like to bring Tricia some smiles. I would like just for a moment, for things to be okay. I would like for her to feel some joy today & smile on the memories of Matt. I would like for her to not feel guilty about being here, being sick & about her beloved brother being gone.