What do you PHear?

[jen-cueva]

Hey there, @Colleen! The first thing that comes to mind is something I think many can relate to.

Even though I had worked in hospice care before my PH diagnosis, my greatest fear was leaving behind Manny, my hubby, and our daughter, KK.
Now, almost 19 years after my diagnosis, I’m in a much better place, and I know they are too. We’ve had quite a few close calls, but my hope is to stick around for at least another 19 years. However, if that’s not the case, I know they’ll be hurt and sad, but they’ll ultimately be okay.

Feel free to share, and I’d be glad to expand on this later. In fact, I might even need to write an entire column about this one thought.

What an excellent and thought-provoking topic for discussion. Thanks, my FWW and friend!🤗

[Colleen Steele]

@jen-cueva I could briefly mention your fear in my column but the meat of it I will reserve for you to write about in your column.

You have an amazing husband and daughter and I’m sure much of their strength they have developed by watching you. But I pray you will be around for more than 19 years!

[jen-cueva]

Hi @Colleen, your heartfelt words are touching. I am grateful for your friendship and generous support.

Yes, feel free to use my words in a future column.

I’m grateful for the love and support from both Manny and KK. I couldn’t do it without them.

Thanks again for such an interesting discussion topic. Hopefully, others will also share their fears.

Colleen, what would you say has been your most significant fear since Cullen’s PH diagnosis? 🤗

[Colleen Steele]

@jen-cueva when Cullen has PH and in the early years of his Post-transplant life, I feared him not ever meeting milestones due to illness or death. Not that he is an adult my biggest fear is health insurance, of him either losing it or it not covering what it should.

[jen-cueva]

Hi @Colleen, yes, why you feared Cullen wouldn’t reach certain milestones is understandable. Post-transplant now and as an adult, losing his insurance would certainly be frightening, and then some if he lost his medical insurance.

Last week, we learned that another larger corporation is buying out the company Manny works for. They say they are keeping the staff, which is great, but still a concern. However, we first thought of what our health insurance would look like once this was completed. The unknowns are frightening and stressful. But we are keeping positive and hope for the best! 🙏

[Colleen Steele]

Oh no @jen-cueva I’m sorry to hear about another corporate change that Manny has to adjust to but most of all, the fear of insurance changes that comes with it! Please keep us update on this! I will be worrying for you!

[jen-cueva]

Thanks, FWW and friend, @Colleen. Yes, I’ll certainly keep y’all updated. They are meeting again on Monday, so I hope to learn more. The paperwork is supposed to be final on Dec. 15. I hope this insurance continues through the year as I am maxed out, and they are covering 100%.

His company isn’t the ony one. Lately, more giant corporations are buying out many smaller companies. Manny said two trucking companies he knows of have done the same in the last few months.

[Cathy Brown]

Like Jen, for me it was the fear of leaving my family, especially my son who was only 11 when I was diagnosed. Now three years later, I feel a lot more confident because my disease is much better controlled and my doctor told me last year I could live another 20 years. I’m gonna hold him to it.

[jen-cueva]

Hi, @Cathy Brown; when I was diagnosed, my KK was about 12. She is now 30! Hopefully, that, too, offers you hope.

We have a promising and hopeful future with the new treatments in the pipeline! I celebrate 19 years in February so you can do it!

However, when our kids are so young, we PHear leaving them. This is certainly not uncommon—hugs to you, sweet friend.

[Colleen Steele]

@Cathy Brown as a mom I can only imagine how much emotional stress was on your heart worrying about your children. You have come a long way because you are a PHighter! Keep at it!

[DeLois Tweedy]

Unfortunately there are many things to fear. I saw a coffee mug while on vacation recently which said “Faith over Fear”. I try to remember that when fear creeps in too strongly.

Among all the fears, three come to the forefront of my mind: 1. The fear of dying. Like many of you. I just don’t want to leave my family right now. Then I’m reminded that no one is promised tomorrow – or the next breath so why waste energy and emotional reserves on worrying. I pray each night that God will keep me through the night, and am grateful each morning when I awake.

2. I have been in some bad places with decreased breathing, as I know each of you have. My fear is that I will have another episode where I simply cannot get enough oxygen in that my body needs. I have had a few of those episodes, and I was terrified. I am very careful to monitor my fluid intake and take my Lasix faithfully. This helps keep fluid retention away, or at least manageable.

3. My third fear is of the unknown with this disease. Specifically, if it will progress fast or slowly. I know my HF and valve disease play a large role. I look at myself in the mirror and see someone I hardly know because of all the physical changes. Will this progress quickly? I fear becoming more and more reliant on others for some of the simplest daily activities. I told my daughter that I feel my body has betrayed me. I don’t look like me anymore, but inside I know I am still the same person I have always been. This gives me hope. I want to always have faith over all the fears.

[jen-cueva]

Wow, I LOVE that mug, @DeLois Tweedy! Did you happen to buy that mug when you saw it?

Your PHears are similar to many of ours. Like you, I also look in the mirror and think I am looking at a stranger some days. But like you, I remind myself, this is me now. You share that you are the same inside. In my thoughts, I know PH and my other health issues have also impacted who I am inside, too.

I relate when you mention PHear of the unknowns of PH and HF. Tomorrow isn’t promised to any of us, right? Thanks for sharing your PHears with us. You do well with writing, Dee. 🤗

[Colleen Steele]

@DeLois Tweedy dying, lack of breath and the unknown are huge, understandable fears! I have watched my son gasp for breath and it is so frightening to watch, and I’m sure terrifying to experience!

You bring up a good point about the unknown. I had forgotten how much the unknown used to scare me until you mentioned it. Cullen went through patches when he was doing very well on his PH treatments. All too often I allowed the fear of the unknown cloud over sunny days. I hope you have found ways not to do the same.

[Carol Volckmann]

Colleen, you certainly bring such thought provoking questions to the forum. Both you and Jen keep going deeper into issues that need all the light so we are able to reach down and let our fears express themselves.

My biggest fear is leaving Dick, the love of my life, my best friend and though he is my greatest care giver and supporter, Dick does need me, he always has. I would just wish he would find someone who would make him happy and full again.

My second biggest fear is dying in the hospital. I almost have a couple of times – alone. Dick and I have both talked about our wishes to die at home, but both close calls in the hospital neither one if us knew how close I was to dying.

The other fears I have all come back to leaving Dick and being in the hospital.

[Colleen Steele]

@Carol Volckmann when I thought about the fears people might mention I hadn’t considered the one about dying in the hospital. Thank you for mentioning that because I’m sure you are not alone. I know my mother-in-law wanted to die at home…and she did. It gave my father-in-law peace knowing she was where she wanted to be when she passed.

Dying in the hospital is bad enough, but dying alone there like so many people did during the pandemic…it makes my heart hurt to think about it!

[jen-cueva]

Hi, @Carol Volckmann; you bring up an important factor many of us can agree with. In my Advance Directives, I have to die at home if my family is comfortable with it.

Yes, as you explain, although Manny is my caregiver, I am also his. He, too, needs me, We’ve been close several times to losing me, and I always remember the look on his face and tears. I can only hope that I will find comfort in my sleep. Being a Hospice Nurse, I am all about comfort and being surrounded by loved ones.

Thanks, @Colleen, for this profound topic. Yes, I know that having COVID and being alone was bad enough. So many died during the pandemic alone; that was tragic for all involved.

[Carol Volckmann]

Hi Colleen, today I am reminded of another fear. Like Jen (@jen), when there is a possibility of loosing your insurance it feels like your world will come apart – you know you would not be able to pay for the meds on your own.

Today was the day to re-enroll with The Assistance Fund. Every year the anxiety of getting your call, or email for when the PH reenrollment for co-pay Assistance opens is frightening. We finally reenrolled and have the status of “Pending”. So, now we wait to see, yet again for another year of funding….

My heart goes out to you Jen. I pray Manny’s new ownership will continue your insurance coverage!!

Thank you Colleen always for your support. Big Hug!

[jen-cueva]

Thanks, sweet lady, @Carol Volckmann. Yes, all we can do is hope for the best and pray. I also hope your pending status changes and is approved ASAP! These are certainly things we fear and can change at any time.

Gentle hugs and lots of prayers and positive vibes hgeaded your way. I appreciate the support.🤗

[Karen Endelman]

I had PAH, was diagnosed about a year and a half ago. My biggest fear us that I don’t know how I’m going to handle this disease as I get older. I don’t have any family near by so when I eventually need help I guess I’ll end up in a care facility in the care of strangers. It’s not just scary, but depressing – in turn, I just try to put it out of my mind.

[jen-cueva]

Oh, dear @Karen Endelman, you share quite a vulnerable detail about your fears. You mentioned you don’t have any family near you, so do you have family in other states? Would you never move to their area, or do they move to your area if needed? I know one late PHriend who didn’t have much family, but when she progressed, her niece came to stay in her home and helped her. My late PHriend had helped her niece and nephew both through college. The niece thought it was her time to help.

Have you talked to anyone about this concern? I would guess talking about it and trying to have some plan if and when your PH progresses would be beneficial. But I can also understand how depressing this may feel.

This is a tough one; thanks for opening up and sharing it with us. I wonder if anyone else has this fear.

[Colleen Steele]

@Karen Endelman my heart goes out to you! I can understand how worried and emotional you feel when you consider what might be as far as your care in the future.

What I suggest and encourage is to continue reaching out to the PH community, not just our forums but perhaps look into PH support groups that might be available in your community. We consider ourselves PHamily. Reach out to your PHamily and you will never be alone!