How Do You Help Family And Friends Affected By Your PH Diagnosis?

[jen-cueva]

Colleen, such a great question and topic to bring up. I know often it seems to our family and loved ones that PH is contagious. This is one of the first that I talk about. But, I also make it known that anyone sick, I rather keep a distance, to not only protect me but for themselves, too.

I love that your son is willing to listen and wants you to make time for you. Caregiving is tough and often our PH can affect our caregivers in more ways than anyone could imagine. Reminding my hubby to first take care of himself, and to take time for himself is a huge challenge. He often feels guilty for leaving me at home. I am happy that last year he started cycling and joined a team. They usually ride for several hours on Saturday mornings. This is good for him, physically and mentally. It is good for me, too as I sleep late since he leaves about AM. – Hehe

I think that open and honest communication is a tough and ongoing struggle as PH leads to so many emotions for all involved.

[Brittany Foster]

I think that communication is so important with family and loved ones. Whether it be talking about the difficulty of being on oxygen, telling others WHY you are using oxygen in the first place, and just being honest about doctor visits is especially important. I find that it helps loved ones including family, close friends, or significant others when they go to doctor appointments with us and hear things for themselves from a doctor. This really helped me sister with accepting that there is no “cure” for many of my conditions. It was just kind of like “this is how she is”. She needed to hear that from someone else besides me.

[Colleen]

Jen and Brittany, I think open communication helps both the patient and caregiver, otherwise they are both silently worrying about the other and nothing good can come from that. It also helps clear the air. One might be worried about the other in regard to something that actually isn’t a concern, or there might be something not being addressed that needs to be. It’s just best to not only speak up, but take the time to listen to one another.

[Brittany Foster]

It’s definitely key to a successful relationship . Especially one where there are a lot of difficult topics that need to be addressed. It’s best to listen to understand and not just listen to respond. I always have to remind myself of that. Sympathy and understanding goes a really long way.

[jen-cueva]

So true Colleen and Brittany,
It certainly is key in any relationship. Listening is something I try harder to work on as I want my hubby to know that his feelings matter, too. Not just one, because PH affects us both.

Taking loved ones along to appointments can be important as you mention, Brittany. I have never had my sisters ask you to go to one of my appointments. You’re blessed with your close-knit siblings, Brittany. My daughter takes me at times as she likes to go. But, I also want her not to worry too much about my health and want her to enjoy her life. Like today, I had appointments downtown and my hubby took me. It is important for him to go. He prefers to go when he can.

[Brittany Foster]

That’s great that he can go to the appointments with you. For me, my boyfriend is usually working so unless it’s an emergency and he has to get out of work for it then I usually either just drive myself or let my mom or dad no in advance so they can take me. My sister has only been to a couple appointments with me so it’s not like she goes to a lot of them, my youngest sister hasn’t been to any with me either. I also don’t want to worry them or make them sit around through all that testing. It can get exhausting for us and for the people that are with us.

[jen-cueva]

Thanks, Brittany. My hubby usually switches his off days if he can on my PH appointment days. His company has been awesome with anything that we need. I am appreciative of them in so many ways. They also went to bat with the insurance and covered a part of my Inogen POC. That was a huge contribution, for me. We still had to pay but they fought for me and paid a portion.

It certainly can be exhausting not only for us but for our over ones who take us. Your mom usually goes with you, right?

[Brittany Foster]

Wow that is so amazing that they went to bat for you like that with the insurance company !! I know how hard it can be to work with certain insurance companies especially when it comes to getting medical equipment approved. I’m glad they are so understanding and can switch some of his days around when he needs it. And yes, my mom usually goes to the appointments with me. Not for routine visits, but definitely goes with me when I get testing done and stuff especially if it is going to leave me feeling tired afterwards.

[jen-cueva]

Thanks,Brittany. Yes, I am so appreciative of his job.

I am glad that your Mom is there and can go with you to those appointments. I usually go to the ones near me alone, unless my daughter happens to be available and wants to come this way. For me, the ones downtown at the Medical Center, I need someone to go with me. Plus, the days I am usually there , I also have some testing, or at least labs. It helps that I have someone on those days. Those days certainly can be more draining.

[Brittany Foster]

Jen,
I totally understand this. I would not want to have to go alone when I’m getting any testing done. I just never can be sure about what the outcome will be for the testing. Even the labwork sometimes will make me feel light headed or dizzy to the point where I just don’t want to drive myself home after. The downtown city parking can be stressful too and I usually like someone to drop me off in the front of the hospital and then they either valet or park in the garage.

[Rebecca Talkie]

Viewing that I am newly diagnosed, I have to admit that I don’t even know what they think about this. I have taken my husband with me to my appointments and he has asked a couple of questions. But to tell you the truth, I think he jumped on the “rare type that is very treatable” phrase and he thinks that I am going to be back to normal soon. My daughters are also hanging onto that too. Consequently, I feel guilty when I am tired and need to nap and have to beg people to slow down because I can’t keep up. I think they are all in denial somewhat.

[Brittany Foster]

Rebecca,
I know that feeling all to well. I still really struggle a lot with this and people thinking that just because I have some good days doesn’t mean that I am “better or cured” I feel like this is what a lot of people really hope for especially because they love us so much and just want to see us doing well but that unfortunately is not the reality. It takes a bit of time for people to see the severity and complexity of what is going on, but having them on support groups for family members and having them go to appts with you can help with this process.

[Colleen]

Rebecca @becca,
The PH Association offers some free resources that might help. When you click on the link that I have shared scroll down and you will come to an assortment of “Guides for Living With Pulmonary Hypertension”. There is one for patients, caregivers, newly diagnosed, someone I love has PH (for ages 10-14) and several others. Maybe reading from one or more of these sources would help your family?
https://phassociation.org/pha-free-materials-store/

[Glenda Clemens]

Hi Rebecca. I’m newly diagnosed as well but no one has said anything about what type of PH I have other than idiopathic or possibly arterial. No one has said anything about it being very treatable or even what treatment I should be having now if anything. BUT I can say for sure, I’m hoping (falsely probably) to get back to normal. I’m a retired nurse practitioner so I know better. Regardless I think that being in denial is a normal reaction for your family. Overtime it will become clear to them that normal is a relative status that is always changing even if we don’t have a diagnosis of PH. I have to remind my husband AND myself that walking fast like I’ve been used to all my life is NOT my new normal. 🙂 My family is being very supportive but they too assume I’ll get back to normal soon.

[Brittany Foster]

Glenda,
Thank you for your kind and wise words to our PH member friend. You are so right that being in denial I think is all part of this diagnosis, especially a big part for family as well as the person that received the diagnosis. There are so many days where I am in denial when I have to use and wear my oxygen when I need it, especially when I find that my oxygen is lower than what is usual for me. It is all part of this life with PH and hopefully each person will be able to achieve some level of acceptance and it will be easier to share what our limits are when we figure out what we can and can’t do ourselves.

[V.R. Peterson]

The thing my son does to help us most is to keep us updated on his issues and procedures. He doesn’t go into great detail, as he really doesn’t like talking about his illness — which makes it even more touching that he keeps us updated at all. Once I have the basics from what he tells me, I can then do Online research and ask questions on the Facebook CTEPH group.

[Brittany Foster]

I’m sure that the online Facebook support groups can be very helpful for family members and for you as a mom. I am always cautious with groups because some tend to worsen my anxiety but there are a lot out there that ARE positive and supportive and those are the ones that I like to go on.

It is great that he keeps you updated on his health and upcoming procedures. My mom always checks in with me even though I go to a lot of my appointments alone. It is good to keep her updated and I like to have her “in the know”

[V.R. Peterson]

I’m really blessed with this group. It’s generally quite positive. The moderators help keep it that way; they’re great about keeping a balance between providing necessary information without being too alarmist. The group literally helped me keep my sanity during my son’s surgery and subsequent recovery.

[Brittany Foster]

That’s amazing. I’m glad that you had a group to get you through the surgery and the recovery. I’m sure leading up to the surgery it was a big help to have their support too. Honestly I am so thankful for the support groups that ended up even GETTING me to my surgery. Without their support I’m not sure I would have had much fight left within me to get me to my surgery and help me keep holding on.

[jen-cueva]

Hey, @mamabear007, I am glad to hear that your son, although an adult does share the tests and procedures with you. Keeping you in the loop, I know is very important as a mom. I also know that he has a great wife who takes care of him, too. But still, Moma wants to know some, not all the details. I like how he does that, just enough. Then the FB group, I am sure helping with questions and support.

Great share, thanks. Sorry, I am a tad behind, Hehe