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Bereavement: PH, Loss and Grief
Over the course of my journey with pulmonary hypertension, I made many close friends who have the disease in common. Unfortunately, my deep connection with the community has led to frequent losses of my friends with PH, or “PHriends.” Losing a PHriend evokes layers of emotions. In the case of close PHriends, I experience intense grief, missing that person’s presence. If I don’t know them as well, the stronger emotion is often fear for my own life.
Support groups have helped me with my grief because sharing stories of the people I have lost can be restorative. Hearing others express similar emotions has normalized my pain. I welcome other patients and members of our community to use this forum as a way to grieve losses, whether it is the loss of a PHriend, family member, or a loss of independence or identity.
Addressing loss and grieving is the only way to move forward. We do not leave our loved ones behind, but rather, carry them forward with us.
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38 Replies
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This topic speaks volumes to me this week. Within the PH community, including here, I’ve found many new PHriends. I say most are more like PHamily. Unfortunately, I’ve also had my share of loss and grieved on more occasions than I care to count.
On Sunday, a close PHriend, more like my PHamily, I said my goodbyes to a long-term PHamily member, Catalina Lomeli. Our PHriendship was started about 13-14 years ago. This one hurts more.
Catalina, AKA Moma Hen to me, came to stay with me in Texas at my home for a week once. KK, my daughter, was a year older than her baby boy. We connected and built a deep friendship, almost mother-daughter-like since she was closer to my mom’s age. We visited her and her family when we visited CA. Our last visit was in late January, after moving to San Diego. She was about an hour and a half from us. We had planned to meet again this week because she had a PH appointment at UCSD.
My heartaches, and I already miss our texts and her jokes. But I’m more at peace because I could say my goodbyes, and she was alert enough to know I was there.
If I’ve missed a message, email, or post here. Please know it’s not you. My mind is all over the place. As my loving and kind FWW @colleensteele, I’ll need to make a point to take care of myself, too, during this difficult time.
I know each new PH angel is heart aching, and we all grieve. So many emotions pop up. I plan to write more later this month in a column. But I wanted to share because you all are the most supportive and thoughtful members. I appreciate y’all more than words can express.
Take care of yourselves and know you are loved. Life is too dang short.
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@jenc I know how much this loss really hurts and I’m so sorry! When someone close to us dies from PH I think it is only fair that we can scream out loud that, “PH Sucks!”
The fact that you were such a good friend to her up to the very end must mean the world to her family. It’s a blessing you were able to be there. I wish I could give you a big bear hug because I’m sure you need one.
As you know, Cullen has lost 4 of his best PH friends and because of that he can’t bear to listen to the song “Memories” by Maroon 5. The lyrics are just too spot on for what it’s like to lose PHamily.
Lyrics:
[Chorus]
Here’s to the ones that we got
Cheers to the wish you were here, but you’re not
‘Cause the drinks bring back all the memories
Of everything we’ve been through
Toast to the ones here today
Toast to the ones that we lost on the way
‘Cause the drinks bring back all the memories
And the memories bring back, memories bring back you[Verse 1]
There’s a time that I remember, when I did not know no pain
When I believed in forever, and everything would stay the same
Now my heart feel like December when somebody say your name
‘Cause I can’t reach out to call you, but I know I will one day, yeah[Pre-Chorus]
Everybody hurts sometimes
Everybody hurts someday, ayy-ayy
But everything gon’ be alright
Go and raise a glass and say, ayyBack to Chorus
Love ya Jen!
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Jen, my heart breaks for you and the loss of Catalina. You spoke of her often and how much she meant to you. I know in my heart she felt the same loving care for you.
Sometimes there are no words that are adequate to comfort someone’s loss. We are reminder by Kathleen that our dear ones are not gone, they carry forward inside our heart.
The comfort I am sending you today is a loving hug and there are many more coming your way. ????❤
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Hi sweet PHriend, @cdvol3gmail-com; thanks so much for your thoughtful words and support. This one has been difficult because we were so close and connected for so long.
Her services aren’t until the 20th, so I know that will be a tough day for me, too. But I am so grateful to have known her and shared such a loving PHriendship. I can be with the family as we celebrate her life and all she meant to us.
I’m sending you back hugs, and know how much I truly appreciate you and the other members’ support.
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Hi @colleensteele, thanks so much for your thoughtfulness and support. Yeah, I know it must have been hard for Cullen at his age to lose so many close PHriends.
With each loss, we mourn, and it often evokes fear.
I love this song and heard it a few days ago. The words are perfect for feelings of losing a PHriend. I’ll listen to it again as I eat lunch because you reminded me.
Today, I feel like I’ve cried almost daily and enough for a while. But we have her services to attend eventually be a cause of emotional turmoil again. Hugs to you, and thanks for being not only my FWW but such a close friend- I love you bunches.
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@jenc Cullen would probably be upset that I recommended that song because he finds it really hard to listen to. When I’m alone I listen to it and yes, it makes me cry but I also find myself have flashbacks of good times Cullen and the girls had together. Maybe someday Cullen can hear that song and have the same reaction. For now, it just makes him too sad and I hope if you did listen to it during lunch it didn’t have the effect on you too!
Love you, Jen and thinking of you during this very difficult time!
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Aww, I bet @colleensteele. Yes, it’s a challenging song, I agree, but I could also think about our fun memories as she was so funny and we laughed a lot. But we also had many tears together like I did when listening to that song.
Maybe, one day Cullen can listen and think about the funny memories and smile as I did amidst his tears.
I appreciate your thoughtfulness and support, always @colleensteele.
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I too relate to all of this! I wish I had some tips to help with the grieving process (besides allowing yourself time to do so) but it’s only been a few short months since we lost our little Kay to PH, and the fear is very real for my husband who also has it. Its comforting knowing I am not alone in these feeling so thank you @KathleenS for starting this column and I love love love “we do not leave them behind, we carry them forward with us” Bless you for writing that, I needed to hear it!
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@kygon I often think of you and your husband often and wonder how you are “really” doing. I’m sure you experience days that are more emotionally challenging than others. My heart truly goes out to the both of you!
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Hi @kygon, I can’t begin to imagine how difficult this is for you and Bryan. Now he is diagnosed with PH, and that’s already a constant reminder of losing your daughter, Kay.
I imagine you busy yourself, too, to keep your mind occupied. It does take time, but the pain will always be there, especially losing a child. Every time I think of y’all, my heartaches with you.
You and Bryan are true Warriors each new day. Plus, you’re supportive of others when you’re in a difficult season of grieving. Big hugs are coming your way.
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Dearest Kathleen, Jen, Colleen, and Ky,
I am so touched by the emotion and wisdom of all of your comments. Thank you. Having lost my baby sister to cancer , I can say that the loss never goes away but the grief does evolve. I have 2 photos of her in my bedroom in her early and later adulthood and now with these photos I can feel the joy of her life in addition to the pain. While I have not experienced the pain of losing someone I love to PH yet, I know that I will grieve differently. How can we not? And yes Kathleen I was also so touched by your words. I will keep those in my heart when some days my grief takes 2 giant steps backward and I cannot rationalize the sense of any loss of life let alone that ones we carry in our hearts. I know I have said it before but this column keeps me connected to my humanity and I so appreciate each of you for giving me a place to find comfort and understanding.
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@mgnorwood it warms my heart to hear how much value you have found in the support the forums provide. Thank you for sharing your feelings and experiences because for every story there is someone out there who can benefit by hearing it.
I can’t imagine the grief of losing your sister. Whenever you are having a difficult day without her please feel free to reach out to us.
I’ve mentioned many times in my column my son’s PH friends who have passed but here is one that really delves into how he has dealt with the loss. @jenc maybe reading this will help support you during this difficult time.
Sharing Hope and Expressing Gratitude for Our PHamily
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Hi @mgnorwood, knowing that you value the forums and find them so supportive fills my heart with joy.
I’m sorry about the loss of your sister to cancer. This must be challenging for you. Please know that we are here for you anytime.
It helps to share our feelings with others who understand and those who may be reading and who are also grieving. Thanks so much for sharing.
@colleensteele, I’ll read that one now in case I read it and need a refresh. The losses in the PH community are difficult, but I’m grateful to have those special PHriendships.
We can carry those memories with us and know our lost loved ones will always be in our hearts.
My hubby, Manny, lost both his parents one year, a few days apart. They were divorced for years, but such a difficult time for him to lose both at once. But as I tell him, we must talk about them to keep their memories alive. Of course, this took some time because he(we) took some time to grieve, first.
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@Jenc and @Colleensteele thank you for your support and kindness, it doesn’t get easier it just gets less frequent but it does hit as you all know in waves. Yes Jen I do stay busy, to not forget but being busy sometimes gets me just moving forward.. I am so sorry for the loss of your PHiend, so hard and Colleen bless you and Cullen, it is so hard to help children go through the grieving process and to do it again and again must have been torture.. hurts my heart thinking of it!
@mgnorwood I also lost a sister 3 years ago actually … she was only 42 and it was very sudden (blood clots in the lungs) we were very tight, it was truly a hard loss and it still hits me in waves. I keep a picture of her right next to my parents who are also no longer with us, but I have not put our daughters picture with them yet… ( still too raw, we still cry every time we see her pictures ) but her favorite flowers were sunflowers and my living room is decorated in them for a little bit of her sunshine …( before losing her I would never think to add yellow in my house and now it is everywhere!) I planted sunflowers so I can take her some from the garden this year. My sister was silly and had black everything so I got me a little black diamond right hand ring and I twist it when its getting hard.. that seems so silly but I have been looking for a little sunflower bracelet I can do the same thing with for Kay …
Best wishes and healing thoughts to everyone! May we all move forward in strength, and when we fall on our faces, may we have someone to help us back up!
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Wow, @kygon, your words had me in tears. I was reading about Kay’s favorite flowers, sunflowers. My daughter, KK, loves sunflowers; we call her our sunshine. Every time I think of sunflowers now, I will think of you and sharing this story of Kay’s love of sunflowers, too.
Like you and @colleensteele, I am the sentimental one in the family. I love family treasures, and my sisters don’t want any of them.
You’ve had so much loss in your life. I love that closing quote as a reminder for all. Thank you for sharing so much of your experiences and support with us. You’ve been extremely vulnerable and helpful to many, including me.
Take time for yourself in this busy week. Is this the family party week?
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@kygon I think you and I share a lot of sentimentality. I LOVE that you wear a black diamond and LOVE the symbolism of the sunflowers too!
But when you said this I really teared up! Such beautiful words! “May we all move forward in strength, and when we fall on our faces, may we have someone to help us back up!”
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I wanted to share my recent column honoring the loss of my PHriend, Cathy, AKA Moma Hen. My hope is that we continue to PHight for a cure and others know they are not alone when grieving a loss.
Check it out here.
Have you grieved a loss recently or in the past? How did you cope?
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@jenc my eyes were watering like crazy before I read this column! Now I look like I just finished fighting Mike Tyson!
This is such a beautiful tribute to your dear PHriend! She is smiling down and watching over you I’m sure!
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Aww, I’m sorry, @colleensteele, for making you cry. I’ve had several others tell me they cried like a baby. It was also several of Moma Hen’s family members. I was so nervous I would share something they might dislike, so I was also trying to be cautious.
Thanks for your thoughtful words. I know she will def be looking over us all.
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