What motivates you to move as much as possible?

[joanne-sperando]

Hi Brittany, after my open heart surgery in 2016 where I received a new pulmonary artery and valve, I lost every ounce of strength and muscle tone I had. Not that I had a lot to start with! I’ve had PH for 21 years and have been very lucky to be fairly mobile. After my surgery, I used to walk on a treadmill at home. Music was my motivator, especially Bruno Mars. I’d say I walked 2 or 3 times a week for 30 minutes. I had to carefully plan my walks as there was no way I could go shopping and then come home and get on the treadmill. I like to dance too and again, if I was going out at night with friends, i’d take it easy during the day (squeeze in a nap too) in preparation. It’s the Spoon Theory! Anyway, in late 2016, my PH doctor sent me to get evaluated for lung transplant. I wasn’t in need at the time, but she wanted me to get ahead of it by getting the evaluation over with. I went and began the process. They did blood work, took my whole, complicated history, etc. At the end of the day the doctor told me I was too healthy to finish the evaluation but they started a file on me in case the need arises in the future. As I walked out the door, the doctor told me, “Stay active Joanne. Don’t be sedentary.” We all know that if we need a transplant, you can’t be too healthy and you can’t be too sick. I took his warning to heart and it did take me some time, but I spoke to my PH doc and with her blessing, I joined the local gym and started working out with a trainer who understood my limits. Some days I used the treadmill and other days I trained with my trainer. I kept checking back with my PH doc to make sure I wasn’t breaking any rules. She said NO to the assisted pull-up machine (too much stress on the thoracic vessels) and warned me to keep the weights light and NO straining. So now, I love working out. I see changes in my body and I get that natural high after a workout. Of course sometimes I’m spent and just come home and vege out, but my energy has definitely improved. Sorry this is so long, I’ve had quite a journey with exercise in my life. I was overweight before PH and had zero discipline. I hated working out. But now that I can see my progress and have the ok from my PH doc, I feel like I’m keeping myself as healthy as possible. If I have a crisis, I’m going in strong.

[jen-cueva]

Wow@joanne-sperando-Schmidt, what a journey you’ve been on with PH! I’m 14 years and it seems like forever. I enjoyed reading your story with exercise and regaining some strength. I was just recently given the thumbs up to do adapted yoga and small amounts of activity by my PH doctor. I feel as though I need to work on regaining some muscle and strength. Your post was motivation. Thank you. I’m starting slow, but I want to do more each week. Every day is different as we can all agree to.

[brittany-foster]

Joanne,
I can really relate to a lot of what you’re saying and some of your story. I always was told to “listen to my body” but found that doing that was so hard for me to do. On the days where my body told me to go for it and workout, I would be caught doing way too much. On the days when my body told me to rest, I always felt overwhelmed by having to just hold off. Like you, I also lost a lot of the muscle tone that I had before after going through a recent heart surgery. The months leading up to it were just physically and mentally horrible. After recently getting back into some activity I feel such a difference in my mental clarity and my physical stamina. I still require the oxygen as needed with activity but there is a definite improvement. I know I’ll get back to the point of feeling as strong as possible. Our bodies need to be fueled with as much self care as they can get! Especially if we need all the spoons for each day!

[jen-cueva]

Well thanks, Brittany, you’re a huge motivator. You do such an awesome job! I enjoy the FB group as others inspire and motivate me, as well. My hubby and kiddos motivate me as they are all working out and strong. I want to get stronger.

As I mentioned to Joanne, my doctor just gave me a thumbs-up recently so I’m moving slow but I’m hoping to do a little more each week. Thank you for all of your hard work and for motivating and inspiring me.

[brittany-foster]

So good to hear, Jen!
I’m glad that your medical team has given you the thumbs up to do some activity. That must feel really good to hear because I’m sure there was a few times when you couldn’t do much or were limited on what you could do. I gain a lot of my own inspiration and drive to work out and feel better from others that are bettering themselves or working on themselves the best they can. It really is motivating to see others going through so much but still staying as strong as possible! Keep us updated on your progress and what seems to be working for you.

[jen-cueva]

Thanks, Brittany! Yes, I’m excited to start trying to add in a little more activity.i have had different ”seasons” as well as limited physical activity. I’m a little nervous also, as I’ve been given that thumbs-up several times before. Unfortunately, a few of those times, my health deteriorated. It’s almost like I have a fear of that happening again. It’s a battle in my mind, but I want to try at least a little more.

[brittany-foster]

Jen,
I would really suggest to start slow and start building your confidence back a little at a time and building back your faith in your body. I know it can be so hard to trust something that has let us down so many times before. But when I started focusing on the small improvements or building my confidence back with doing things like yoga videos, pilates, etc I saw that my body actually COULD do some of it. It is HARD to start trusting your body again, especially because it feels so unreliable sometimes. I totally get where you’re coming from but I know that with some time you will see differences !

[jen-cueva]

Thanks, Brittany, I am sure you can relate. I know it is crazy the many “seasons” that our bodies go through. I already do Yoga and hope to start going to the gym some with my hubby. It may be baby steps, but I will definitely appreciate when my body becomes stronger.

[brittany-foster]

Going to the gym with others definitely helps to motivate me. I get into competition mode easily. I have to admit though that sometimes my boyfriend feels like I “show him up” at the gym especially on the days when I enter into beast mode and can stay on the treadmill or machine longer than him haha!

[jen-cueva]

LOL, Love that Brittany! I will have to remember that as my hubby uses the term, “Beast Mode” quite often when talking about his workouts. Who knows, one day I may show him up, Hehe

[Colleen]

My son needed the most motivation to move around whenever he was in the hospital. Sometimes his team didn’t want him out of bed but often it was required that he get up and walk a bit in the halls. This was especially important when he was waiting for the transplant call. It was part of keeping him strong for transplant.

However, you can imagine how difficult walking was and of course he had to have a nurse with him whenever he was moving around. He was so sick and really didn’t want to get out of bed but he was always motivated by a male night nurse. He would delay the walk until that nurse was on shift. The guy had a sense of humor similar to my son’s which was a nice distraction from the difficulty of walking. Also, he always promised my son a milkshake when he got back to his room.

Another motivator was being allowed to walk to the game room and play Nitendo.

I know this isn’t exactly the motivation and exercise you are talking about but the word motivation made me think of his hospital stays.

[brittany-foster]

Colleen,
Thank you for sharing that about your son. I can relate to how hard it is to stay as active as possible while in the hospital. The last surgery I had for my heart I was put on contact precautions because right after my surgery when they tested me for MRSA and VRE I ended up being VRE positive. It put such a damper on the first few weeks of my recovery because I was pretty much just confined to the space in my room and that’s it. It was pretty torturous to say the least. But I am so glad that your son found a nurse that helped to motivate him. Nurses are such special people and really can make (or break) a hospital stay. They leave such an impact and usually with my experiences it has been for the better and they have been really great. Especially when I am in a children’s hospital. The amount of compassion they have is really remarkable!

[jen-cueva]

Hey Colleen, I’m glad that your son had that connection with the male nurse. I’m sure it was tough for him to walk much at all in his condition. I’m with him, a milkshake is an awesome motivator to move more. Hehe

[brittany-foster]

I wouldn’t do much for a klondike bar, but I’d do some shady stuff for a milkshake. By “shady” I mean walking the halls when I don’t really feel like it hahahaha! Definitely a motivator for SURE!

[jen-cueva]

Hehe Brittany, too funny! That now reminds me of the “Milkshake “ song from Mean Girls. Hehe

[jimi-mcintosh]

I move and try to stay active to feel better and to experience a normal
Previous PAH life. I have to control
My weight and live life. I want to grow real old and enjoy grandkids and great grand kids. I really miss being in control of my destiny

[jen-cueva]

Hi Jimi, I love your positive outlook. I am sure that your grandchildren and great-grandchildren are huge for motivation.

Losing that control can be tough, but maintaining some control over the exercise we do and food that we eat can help us with this. I feel if I am making choices on certain things such as food, exercise, and my daily schedule, I am still having some control. Does this Does this help you?

[brittany-foster]

Jimi ,
I feel the same way. Feeling like you don’t have control over your day to day and minute to minute life is really hard. Just recently I was completely fine and went out to dinner, dressed up, had a great night with family and friends for my mom’s birthday and woke up the next day feeling just so overly fatigued I knew something was going on. On Saturday I was on medications for bronchitis and pneumonia. This is so unpredictable and that’s something that is really hard to accept. All we can keep doing is the next right thing for ourselves and it sounds like you are wanting to make some positive changes to be the best you can be, and that’s SO GREAT

[jimi-mcintosh]

Thanks Brittany, we must be related, I went for a follow up visit and was diagnosed with walking pneumonia, steroids and strong antibiotics. I was watching a 111 year old senior on TV today and she had a hearing loss and no AC in her home. caring citizens fixed that “God” fix me. I have more bad days than good days, never know what to expect. I realize that I can improve my
Health with lap band, just dread any potential other issues. It is comforting to talk with like suffers, I spend time apologizing for a lack of activity. My 2 year old twins, call me “captain huff and puff” , after a story they heard. Thanks for being here to
Help us all to weather the storm

[Colleen]

Oh no Jimi! I’m sorry to hear that you have hopped on the pneumonia train with Brittany. Not fun! I hope you both recover quickly. I love the nickname the twins have given you. I’m sure you can’t help but smile at that!

[brittany-foster]

Jimi,
I really enjoy talking with all of you too. It’s comforting to know that people understand the struggles that we go through. I know that I catch myself apologizing a lot for my “bad days ” and it seems like I am doing even more apologizing lately with recovering from pneumonia and bronchitis myself. When you have this going on , on top of what you’re already dealing with it can feel so overwhelming. I totally can relate.

[jen-cueva]

Jimi and Brittany,
It is such enormous support here as we discuss our struggles. I, too, find that I apologize for my health and my “bad days”. I am learning to work on this in therapy. Last week, she said I have so much “guilt” and that I need to stop apologizing for things I cannot control. So, baby steps…

I hope you both feel some relief soon with your antibiotics and steroids. Hugs

[brittany-foster]

Jen,
Really good advice! It’s important to STOP APOLOGIZING for what’s beyond our control. We feel like we have the weight of the world on our shoulders sometimes and we can’t let that bring us down on top of everything else that we are dealing with.

[jen-cueva]

Jimi, I am so sad to hear that you and Brittany, now both have Pneumonia. I hope that you both feel relief soon as your meds kick in.

Aww, I love the name the twins gave you, too cute!

I am sorry to hear of the loss of your oldest daughter due to Lupus. I admire and respect your encouraging energy and enthusiasm for life. Keep living one day at a time. It sounds like you have an awesome family.

[jimi-mcintosh]

Thanks Brittany, we must be related, I went for a follow up visit and was diagnosed with walking pneumonia, steroids and strong antibiotics. I was watching a 111 year old senior on TV today and she had a hearing loss and no AC in her home. caring citizens fixed that “God” fix me. I have more bad days than good days, never know what to expect. I realize that I can improve my
Health with lap band, just dread any potential other issues. It is comforting to talk with like suffers, I spend time apologizing for a lack of activity. My 2 year old twins, call me “captain huff and puff” , after a story they heard. Thanks for being here to
Help us all to weather the storm

[jimi-mcintosh]

A positive mind leads to a Willie as to not give up, when all else fails, just keep going, something better or worse is around the corner. I tell my grandkids, you can only defeat yourself

[brittany-foster]

Really wise words of wisdom , Jimi! We do only have this one life to live and it’s important that we make the most of it. Your kiddos seem like they really motivate you to be the best that you can be. I can’t even imagine losing your daughter at her young age of 18. Do you also have Lupus or does anyone else in your family? I’m sure this really gave you a different perspective on life and life’s little moments that should be cherished.

[jimi-mcintosh]

Thanks Colleen , the twins are special, I was drafted to go spend a couple of weeks with my 3 rd daughter, while daughter 2 was finishing up
Some work to come help her out, with
The twin pregnancy. Two weeks became
5 weeks, son in law traveling, I ended up in labor and delivery. The last place for a grandfather.

My oldest daughter died from Lupus after suffering for 18 years, so my kids became my world. I was a work-a-
Holic, all for the career. Life is to be lived,being with people you love and enjoying new things. You can change many things, except genetics, I was given this gift, so no matter how bad, I live with it and make the best of it.

[jimi-mcintosh]

I was originally tested for Lupus, a long list of immune diseases. They could only say that Lupus is related to other immune diseases like MS, Sickle Cell, PAH. I carried the quilt of her Lupus for years, just never got any closer than my mother had PAH, and at times exhibited the “butterfly mask” of Lupus. You can change a lot of things,
But the generics, you are stuck with.

I have gone from running several
Miles , several times a week to walking less than 1/2 mile. I hope that the sacrifices we all are making will yield a cure or control for those following in our shadows.

[brittany-foster]

Jimi,
I can imagine that when something is genetically based it leads to a lot of guilt feelings on the parent’s end of things. My mom’s family passed down a genetic conditions that is autosomal dominant in my family impacting the nervous system including brain and spinal column, creating spinal tumors, a form of spina bifida and also respiratory and cardiac conditions. I seemed to get the “lottery” of pretty much all the phenotypes of the gene that is effected. Others in my family have it to different degrees even though they are positive for the gene. I know my mom does carry some guilt in wishing she “knew sooner” or picked up on it sooner. But like you said, even if she were to know before birth that I had all of this related to the gene there still wouldn’t be much to do besides treat the symptoms when they arise! It’s hard to accept that though. We don’t have control over our genes but we DO have control over how we manage it and the care we receive. I choose to never settle for less than what I know I deserve and the best quality of care. I also choose to spread awareness so others may not have to suffer as much in the future. This is why we never stop pushing !

[Carol alexander]

I understand what living with the gift you are given. My mother just died from right heart failure and ph along with pulmonary fibrous. Was missed diagnosed for 15 years told I had asthma along with the fact I was getting older.Each time I had a crisis my breathing became worse.Was diagnosed about a year a go with a eco and right heart Cat.

[brittany-foster]

Carol,
I’m so sorry to hear of your mother passing away from PH and PF . This is such an awful combination to have. More awareness is needed so people can stop being given the “asthma” diagnosis without making sure ALL the medical bases are covered and the more serious conditions are rules out !

[Colleen]

Carol, I too am sorry to hear about your mother living with then losing her battle with PH and PF. It must have been very hard on you watching her struggle. I can relate to your asthma misdiagnosis. My son went through that for 2 years and if they weren’t telling him asthma they were claiming he had croup. I hope you have been having better days.

[jen-cueva]

Hi Carol,
I’m sorry that your Mom passed away from PH , PF, and heart failure. It’s terrible that so many are misdiagnosed for so long. I’m glad that you were finally able to get a diagnosis and start on PH meds.

I know prior to your mom’s passing, you were taking care of her, as well. Do you feel like you’re able to take better care of yourself now?

I’m sure that you’re still grieving and I hope that you can find some peace.

[jen-cueva]

I recently started moving more and trying some new exercises. My goal is to exercise 3 times per week. I can do inside workouts with a 5-pound weight to help gain strength in my arms.

Of course, PH tends to want to be in control, so not all of my exercise plans happen. But it’s a start. Plus, I do have the E-bike that I ride with my hubby, Manny. That is what is on our agenda for this coming weekend.

Has anyone else started moving more? What motivates you? I’m inspired by our girl Brittany and many others who continue to push through daily.

[Colleen]

Way to go @jenc! Just don’t over do it my friend. I love hearing that you are going to be riding your E-bike this weekend. Enjoy!

[jen-cueva]

Thanks, @colleensteele, for your encouragement. You sound like Manny, hehe. He reminds me not to overdo it daily.

Have you still been doing your walks?

[Colleen]

@jenc I’ve been tackling my backyard this summer and my walks have been missed in the process.

My backyard is difficult to maintain due to stones and rocks that keep surfacing and a wooded area behind us that keeps jumping the fence. I let things go and now blackberry bushes have taken over the yard. Brian said we should just rent some goats. LOL!

I’ve actually been enjoying the work though. It’s hard work yet mentally therapeutic.

[jen-cueva]

Wow, @colleensteele, the backyard clean-up sounds like a huge project to tackle. Does Cullen help with it a little at times? Or was that more Aidan’s speed?

I’m grateful that you find it therapeutic. Do you have any blackberries on that bush? That’s my favorite berry. I used to pick those in my grandparent’s yard as a kid.

Brian has such a great idea, LOL. Can you actually rent goats? I bet you can. That’s too funny; I can picture you, your cat, two dogs, and the goats back cleaning up the yard. Hehe.

Hopefully, you can enjoy a nice relaxing soak to soothe your muscles after doing that strenuous yard work. I also would say enjoy a glass of wine.

[Colleen]

@jenc Cullen comes back to check on me a lot and I yell at him to at least put a mask on. He can’t do that type of yardwork because there are too many air born things that could get released and hurt his lungs.

[jen-cueva]

Aww, yep, that makes sense; sometimes I forget to think; @colleensteele, my apologies. Too funny, I can hear you yelling at him for his mask as he’s coming out, yelling at you to take a break.

I adore how concerned he is for you. Isn’t it funny that not long ago, you were taking care of him at such a young age, and now this? He’s one remarkable young man.

Please do take breaks and don’t overdo it. You have to take care of yourself, my friend.

[Colleen]

HaHa @jenc Cullen and I are quite a pair. Too often I hear my own advice coming out of his mouth and back at me!

Brian keeps forgetting too that Cullen shouldn’t do weeding. He has asked why I don’t have him out there helping me. I just give him a look and he says, “Oh, yeah, ok, right!”. LOL!

[jen-cueva]

LOL, Cullen is just your mini me inside his male body. I adore that so much.

Too funny that Brian asks if Cullen is helping with the yard work. It’s often easy to slip our minds when he has done so well post-transplant for the most part. Thank God.

Please don’t forget to take those much needed breaks and hydrate.

[kygon]

That is Awesome @Jenc, I think what motivates my husband to move is distraction .. if he is doing something, he is not focusing on how uncomfortable he is … he is also in PAH Physical Therapy twice weekly and they give him exorcises specific to his needs, and monitor heart rate BP and oxygen for safety, if anyone is interested in this they should talk to their PAH team and see if it is available! Did you know arm peddling forward is great for inhaling and back arm peddling is great for exhaling? So cool to learn with asthma.. I have added it to my routine as well!

[jen-cueva]

Hi @kygon, thanks for your kind words. I, too, did participate in pulmonary rehab early in my diagnosis. I attended 3 times per week and didn’t do much else on those days. My PH doc said that was OK, too. Several others here have participated or are currently in a pulmonary rehab program.

I’m reminded of Amy Winehouse’s song whenever I think about this. I start singing, “They tried to make me go to Rehab
But I said no, no, no”- Hehe.

We once had one of those small peddling devices but lost it somewhere along the way. That makes sense. When I work with my 5-pound weight, I focus primarily on my breathing. Thanks for sharing your experiences.

[barbara-a-perry]

What motivates me to move more is liking the exercises: tai chi, chair yoga, deep breathing and meditation plus a little walking with friends. The senior center in the county I live in in NJ provides programs for seniors free of charge. Two are face to face, and one via Zoom.I also rug hook twice a week, a hobby that I enjoy.

[jen-cueva]

Hi @braysgemstone, it’s great that you’ve found some exercises you enjoy. I love that they are offered in groups. Your senior town center is working hard to keep the seniors active and interacting.

Is the rug hooking a group class too, or something you enjoy doing at home? My late grandmother kept my sister and me busy doing latch hook kits when I was young. Is that sort of a small rug hook?

[barbara-a-perry]

Yes, our senior center does a terrific job of keeping we seniors active. Rug Hooking is a separate enjoyment. We meet as a group of persons who share the same enjoyment, and we learn from each other.I also like latch hook. Almost forgot that I play mahjong on Monday afternoons and belong to Red Hats book club and monthly lunch club,a fun group. Current book is “The Warmth of Other Suns” by Isabel Wilkerson, historical non-fiction.

[jen-cueva]

Wow, @braysgemstone, it sounds like you keep yourself busy. I love it!

The Red Hat club was famous in Texas when we lived there. My daughter and I would see the group of ladies all decked out enjoying luncheon at our favorite local tea shop. They also participated in many parades and various fundraising events we went to.

You have quite the social calendar; when do you rest? Do you also make dinner at night after a busy day?

[Colleen]

@braysgemstone I enjoy hearing about the different activities that our members enjoy. I think rug hook is different from latch hook? My mom and I used to do latch hook together when I was a child. A few years ago I thought about taking it up again, bought a kit and never did anything with it. I’ll have to remember where I placed it and maybe give it a go this winter. How did you get started rug hooking? What is your favorite one you have ever done?

[barbara-a-perry]

Getting started in rug hooking came about after admiring a wall hanging in a friend’s house, and she said, “I can teach you how to do that.” Traditional rug hooking is different from latch hook in that our foundation is different and hook is different. My favorite rug is the one I’m working on, my black lab, Raven, it’s done in fine cuts, 3’s. I bought a partially latch hooked tiger coming out of the jungle at a garage sale for $1.50 and finished it. It now occupies a space on my bedroom floor.

[Colleen]

@braysgemstone am I understanding you correctly…you purchased and finished a latch hook a stranger started? If that is true I love it! I don’t think I would have ever felt inspired to do something like that. What a lovely thing to do!

[mendo-bruce]

I pay a caregiver to come over three days a week and make me walk on my treadmill for 25-30 minutes. I always have a good reason why I can’t do it and that reason is good enough to keep me off the treadmill when I’m alone, but my caregiver doesn’t accept my excuses and makes me at least try for 5 minutes. Usually, once I’ve started she can cajole me into walking a little more and then a little more after that and I usually end up hitting my target (25-30 minutes with heart rate high enough to get my body into an aerobic state.)

[jen-cueva]

Hi @mendo-bruce, It’s nice that you can have a paid caregiver come over and cheer you on the treadmills three times per week. Making excuses is always tricky when someone else is holding us accountable.

Before PH, when I was still working, I had 2 friends that we would do this for each other. It was more challenging to say no and disappoint them each morning at 5 Am, so I woke up early and met them at the track.

WTG on staying active! How have you been doing lately?

[Colleen]

@mendo-bruce it sounds like you have an excellent caregiver if they are able to encourage you in that way. How do you feel afterward, not just physically but mentally? It can often feel really good when we push through something difficult.

[barbara-a-perry]

Thanks, Colleen, for your kind words. You can do anything you set your mind to do. I now wear a mask while rug hooking due to the dust that I might be breathing, but I keep going. Your backyard cleanup is great exercise. Good work.