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Thinking of you and Dick both, @cdvol3gmail-com. Losing a doctor who cared for you so long is difficult enough; a friendship built with him is even more of a struggle.

It sounds like this was a surprise, and he was not sick; it just happened as he slept. I am hopeful that he was not suffering.

My continued thoughts and prayers are with you…[Read more]

Hi @colleensteele, I am grateful that you could offer a letter of medical necessity for Cullen. I think that works in most areas that do not have a specific CC form.

I think it does help, but last week’s event, they had no control over who comes back on because of the weather and demand. When I called and spoke with them, they gave me updates and…[Read more]

Thank you Colleen and Jen. Our doctor aside being a great quarter back he was a very dear friend.

We still cannot get our heads nor hearts around his death.

The rest of my medical team is there and has my (and Dick’s) back, but Jeff was the one we would always turn to and get his view.

Thank you both again with love ❤

@cdvol3gmail-com that is awful news about your doctor! I am so sorry! You must have felt devastated when you heard, not just because you lost an excellent doctor but I’m sure after 20 years he felt like a trust worthy friend. My deepest sympathy.

@jenc I wasn’t aware of an actual form that some areas apparently offer. I don’t know if WA has one. We gave our company a letter explaining Cullen’s health issues. To be honest, I was always skeptical how much they paid attention to it. I remember two times when I called them before a big storm hit just to remind them of that we have a child with…[Read more]

Thanks, @colleensteele. I am so happy that this is helpful for many. I was unsure how caregivers would react. I am fortunate that he was willing to share that much.

@cdvol3gmail-com, thanks as always for your support and kind words. I read these comments to Manny, and he was speechless. I am happy that Dick resonated and now knows that he is…[Read more]

Thank you, @s-steppins. I am happy that you found this helpful. It certainly helps to have a supportive partner through all of this. I agree; we are fortunate. Thanks for sharing your thoughts. Let me know what your hubby thinks.

I am sorry to hear of the loss of your internist. I am sending you extra hugs from Texas. They become our family, so sorry.

I know how important it is to find a medical team that you trust your life with. It often takes time, as you mention.

I am certain that Kris is appreciative of your tips and support. Never give up; I often see several…[Read more]

It is our pleasure to help as much as we can, @kristine. I hope that you will keep us posted as you navigate all of this. It can be overwhelming, for sure.

Thanks for asking; we are good this week. Last week was not the best, but we did it “off the grid” a few days. I am grateful for our generator and my hubby helping to keep us safe and my oxygen going.

Jen,
What a touching way to show and represent all the sides that can be affected within a family unit from this disease. I found it to be very poignant. Thanks for sharing.

After several years of being misdiagnosed I was finally diagnosed with PAH caused by Sclaraderma 16 years ago at the age of 60.

I found a Pulmonolgist who wanted to treat me very aggressively and I was fine with that. I am now 77 ( in May) and remain stable with PAH. I plan to be around for a very long time 😊.

What a inspiring column Jen. As Collen so aptly put … congratulations to you and Manny for kicking PH butt for 16 years! I know you two will continue to kick butt.

Manny, thank you for being so open and honest with your feelings – it touched both Dick and myself. You helped Dick realize that he is not alone in this fight as my caregiver, best…[Read more]

Colleen what a great topic! And what great insight, resources and advice you and Jen gave Kristine.

It is important when you have a life threatening chronic illness you find the right team. The relationship has to be honest, respectful and open to finding other doctors with expertise that will be shared.

I had a really tough time in finding the…[Read more]

Hi Jen, all is well here. The sun decided to come out today!

As far as health issues, still working on getting control of my poo incontinence caused by Sclaraderma which also caused my PAH. The stimulator is still not working well while my PT is helping a bit all is not great yet.

The issue with all that is I have been unable to do any real…[Read more]

@jenc congratulations to both you and Manny on 16 years kicking PH butt! Manny did a great job answering your questions. I have no doubt this column will pull at heartstrings and help others going through what the two of you have. So many great quotes in this column!

That was a great read Jen.
Thank you for posting this.
I will ask my husband to read it as well.
Your husband sounds wonderful.
Mine is wonderful as well.
We are lucky.

Jen,
How are you doing with all the trauma Texas is dealing with?