- This topic has 86 replies, 11 voices, and was last updated 1 month ago by Colleen Steele.
January 26, 2022 at 5:03 pm #33211
@texas2018 and @jimi we haven’t heard from you guys in a while. No worries if you aren’t up to commenting. Just want to let you know I was thinking about you and hope you are doing well.
If any member is wondering how another member is doing, feel free to reach out as I just did.
January 27, 2022 at 1:24 pm #33226
Thanks, @colleensteele; we both worry about our members when we don’t see any posts. I would also like to mention @auntlizzie, @nancy-mcsweeney, @alfredjohn, and @terry.
Again, o need to respond, but if you feel up to it, let us know how you are doing.
January 28, 2022 at 1:09 am #33243
Thanks for asking. Yea I check in every now and then but not much to contribute . I wake up every morning and think WOW I’m still here and I can breath,kind of. What a great day it will be.
In Dec. had check up and cat with Cardiologist. Alls good, well he didn’t say it wasn’t good .Had some kind of cat ,6 min. walk and respiratory tests with Pulmonary bloke following week. Walked 530 yards and respiratory tests showed better than average lung capacity but pressure up. I knew all that its between the lungs and heart I suffer .Walking in an air conditioned corridor not a problem . Point me up a flight of stairs ,na forget it. Over 92% of all Aussies are double jabbed and I have had booster so not that concerned about that other issue.
Phew I need a cup of tea and a lie down.
January 28, 2022 at 1:24 pm #33248
Hi @terry, I’m happy to see you post an update. I love your positive attitude as you start each new day. We are fortunate and blessed to be here, indeed.
Your “cat 6 min walk ” test made me laugh- all I could picture was you strutting down the hall- hehe.
I’m with you on the stairs; they’re the devil. Heck, I’m not that good in a building with AC.
THat’s excellent news that must these are jabbed and boosted. My hubby, Manny, watches these off-road Aussie guys. I’m sure you have a name for them; well, he follows them on this YouTube channel. Each time, I wonder which area you live near. The water is beautiful there. What region are you located in?
Take care, my PHriend, and thanks for checking in.
January 28, 2022 at 5:23 pm #33256
@terry good to hear from you and thanks for the update! I’ve been battling with health insurance all day so I also think it’s time for a lie down and cup of tea. Have a nice, relaxing weekend!
January 29, 2022 at 3:41 am #33261
G’Day Jen, So we retired to the city of Brisbane Queensland ( popul. 2.2 mil.) which is on the same latitude as Sarasota . I am 40 mins drive from the Gold Coast and the famous surf beaches down there as well as my sail boat. Brisbane is about four hours drive from the Southern end of the Great Barrier . We have lived in the outback in the middle of Australia as well as down south in Melbourne. So there you go
January 31, 2022 at 12:50 pm #33267
G’Day Mate, @terry. Wow, you’ve been all around Australia, it sounds. The videos that my hubby, Manny, watches are beautiful, and they travel all around there, too.
We have had Australia on our list of places to travel for years. Hopefully, we will get that way one day.
Do you continue to sail? @cdvol3gmail-com also has a love of sailing. I’m envious of you both since I’ve never been on a sailboat. It’s a ton of work, right?
Have. a great new week and month.
January 28, 2022 at 7:40 pm #33258
Hi Colleen, Jen and Terry. Thanks for the reminder to keep in touch. I haven’t got anything to report. As with Terry, I am double jabbed and boosted and now wondering when they’ll announce the next booster, and they will. My November PH Clinic checkup was good – I always do around the 500 metres too. Here in Westmead, Sydney, we’ve got brand new facilities after ongoing billion dollar building works were set up. I can now lie on the couch during my heart echo and not wonder when the ceiling will fall on me. I remarked this to the techo in the new facility and she laughed and then pointed out how the vent in the ceiling looked like a flower, so I took a photo to use in my sketching. Keep safe everyone.
January 31, 2022 at 12:53 pm #33268
Hi @auntlizzie, I’m happy that you popped on to update us. Your new facility sounds lovely. I had to laugh at your story about the Echo and not worry about the ceiling falling on you. But I love that now it looks like a flower, so you can loom at something else while lying on that table. hehe
That’s excellent news on your positive PH clinic appointment in November.
Take care and stay safe.
January 31, 2022 at 4:20 pm #33274
Hi @auntlizzie, so nice to hear from you and with a fairly good update. I’m so glad to hear you no longer have to worry about a ceiling coming down on you! LOL! Love that you took a picture of the “flower” as inspiration. What else have you drawn lately?
January 31, 2022 at 6:56 am #33262
I am still adjusting to dialysis, and being totally exhausted most days. Add the shortness of breath and you have a full day. I have lost about 50 pounds, goal is to loose another 25 in the next 3 months.
January 31, 2022 at 4:16 pm #33273
@jimi I hope you don’t mind when we call you out every now and then. You are often on our mind and we just like to check-in and see how you are doing. I’ve heard that dialysis can be grueling and I am so sorry you are having to go through it.
I forget, are you doing dialysis from home or the hospital? What is the schedule like?
Congratulations on the weight loss! I believe you are a strong willed person and you can reach your goal!
January 31, 2022 at 12:58 pm #33269
Hi @jimi, I’m sorry to hear that you’re wiped out after your dialysis days. I’ve seen that when working in nursing. Those who haven’t witnessed or experienced a day of these treatments have no idea what a toll it takes. It’s expected, and most share that same experience.
Wow, 50 pounds already, that’s quite a lot! I can’t imagine how draining this all is for you. I hope that the extra 25 pounds will help with your shortness of breath.
Do you have more help on dialysis days? How many days per week are you going, three?
February 1, 2022 at 12:24 am #33280
Hi Colleen and Jen,
Not been everywhere ,Oz is a big place but have lived a ‘boys own book’ life I guess. Mustered wild buffalo, herded wild brumbies from the air, ocean yacht raced etc.etc. But its all caught up with me. Scaled down to a 22 foot sail boat I sail solo thesedays ,actually was out today and got caught up in a pod of dolphins feeding . WOW.
I have to watch I don’t overdo it as it can be hard work and when I feel the ticker pounding and my breathing difficult I back off. I log on with local Volunteer Marine rescue each time I go out so they know to look for me if I don’t report in at an agreed time . Our States motto. Beautiful one day,Perfect the Next. Right now 34 degrees C 82% humidity, not so perfect.
February 1, 2022 at 2:26 pm #33288
Wow, @terry, you’ve certainly “been around- haha.
I love that you continue to sail some days. @cdvol3gmail-com this may interest you as you have a love of sailing, too. Plus, you, too, have “been around” – I love that you can share your travels and hobbies with us.
Terry, that’s an intelligent plan to alert the local volunteer Marine as you head out and offer an ETA. Also, listening to your body and slowing down a little when you feel those increased symptoms makes me happy. But, I can only imagine how difficult that is when sailing solo.
How far do you usually go out? So cool- the dolphins feeding, is that a common occurrence for you?
Aww, that state motto, no wonder so many love Australia.
February 1, 2022 at 2:29 pm #33289
Hi @colleensteele, I hope that you’re done with the insurance dealings for a while. Was that resolved for you?
Our insurance switched over from Cigna to Aetna this week, so I think a column next month will be based on this often dreaded topic. I’m not overjoyed one bit to start changing everything, but I did create a checklist, so I don’t miss anyone-specialists and pharmacies.
February 2, 2022 at 6:33 am #33308
I am in the chair 3 days a week M,W,F from 6:30am to 11:30, then the cramping starts, struggle to get an appetite, intaking fluids up to my limit. Add PAH, it is a balancing act. Dr’s said the fluid retention was affecting breathing, new BIPAP, things would get better. I am holding on, wishing for a cure. Thanks for thinking about me
February 2, 2022 at 12:41 pm #33319
Oh, @jimi, I’m so sorry that you are trying to manage and balance so much at once. I know getting to and from the dialysis center three times per week in itself can be exhausting. After your treatments, I can only imagine how horrible and tired you are.
What activities do you do to keep your mind occupied during those long treatment days? I remember some would listen to movies via headsets read, and others would sleep the entire time.
I am thinking of you and keeping you in my prayers, Jimi. Take one day at a time, one hour, if needed. You got this, my PHriend; you’ve always persevered despite your struggles.
I’m sending you much love and hugs coming from sunny San Diego.
March 17, 2022 at 2:39 pm #33701
Hi y’all, I wanted to check-in and see how everyone is doing. How is your week going? What’s new, and how can we best support you where you are at this moment?
Of course, updates are optional, but Colleen and I do think about y’all and worry when we haven’t heard much.
@jimi, @ripple76, @terry, @texas2018, @carol-alexander, @alfredjohn, @jenniferbeaty, and others, I can’t tag everyone, so I try and tag a few each time.
March 17, 2022 at 5:26 pm #33703Randolph ReynoldsParticipant
Back to you Jen and Colleen: I’m still here and my last two meetings with my doctors indicate that all is sailing along well. My worst enemy is emotional discomfort brought on by what I have to do to keep going and the need to not feel isolated. I remember when I was flying out of Thailand my girlfriend would send me letters, cartoons, and believe it or not cakes and pies. The latter were carried in the gun drum of replacement aircraft and would be preserved by the cold air. I treasured getting those letters and when I returned to Japan I sensed where this was leading. Next week we celebrate 55 years since our engagement.
Today, being somewhat limited in my ability to go places, I rely on emails for the most part. So when I got the email about being out of touch my reaction was to start writing. I hope it doesn’t bother anyone. Incidentally of late my former military friends have been exchanging emails on the war in Ukraine. You can expect that we have tried to demand a unified and determined response to the Russian invasion. All of our deliberations have been sent in part to various elected officials. Years ago we were trained to meet the Russians in the air. Younger jocks may get the chance.
So that is what I’ve been up to.
March 18, 2022 at 7:16 pm #33713
@ripple76 Congratulations to 55 years! I am such a romantic. My heart melted when I read about how much those letters and treats from your girlfriend meant to you. That is a precious memory and I thank you for sharing it with us!
The war in Ukraine is heartbreaking. My respect goes out to you and your military buddies for the effort you are making to the cause.
It’s good to hear from you. I hope you will keep checking-in with us every now and then.
March 21, 2022 at 3:21 pm #33719
Hi @ripple76, wow, 55 years is fantastic! Congrats! Reading about you waiting for letters, cakes and pies remind me of when Manny was in the Navy, and we were dating. He kept most of my notes and waited for the mail daily back then on the carrier. Then as we were married, when he was out to sea, it was calls and mail again. Those most have been the sweetest arrivals!
Yes, the war in Ukraine is heartbreaking. We always hear talk outside about this in San Diego as the military surrounds us. Cheers to you and your Veteran buddies.
Take care, and thanks for the update, my PHriend. Big hugs are coming your way.
March 17, 2022 at 8:58 pm #33707
Glad to see that you are still fighting to obtain some normalcy in fighting PA, this has not been easy. When I was in tge military, I knew what yge misdion was, the risk and what the future looked like. 9 years later and I don’t know who or what the enemy is, nor what awaits me over the next hill. I try to be positive, to live life at its fullest, willing to reach out and help others. I too, am limited in my travels and I get aniexty thinking about flying like I use to do weekly. Family and real friends , has made this journey possible. I have gotten a good therapist that is helping me to put things in prospective. The VA, is becoming more helpful, in scheduling and listening. Life is as good as it can potentially be at this moment.
Myself and some fellow veterans are worried about being dragged into a real conflict , on top of Covid, run-away inflation, political turmoil and uncertainty. Tomorrow is a new day
March 18, 2022 at 6:46 pm #33710
Hi @jimi you are a good soul. I respect how you try to reach out and help others. No matter what we are going through in life we can find something within ourselves to help others. Something as simple as a phone call can make a difference in persons day.
It sounds like in return you have built some good support around you. We all need that during these crazy times, don’t we?
March 21, 2022 at 3:26 pm #33720
Hi @jimi, you are so thoughtful. I appreciate that you offer support to others when you’re struggling yourself. It sounds like the VA is helping you, so that’s excellent to hear. Those close friends and family help us through the difficult days, aren’t they?
You and your Veteran buddies have valid concerns, but it sounds like y’all keep moving forward. Take care, my PHriend; thanks for the update.
May 25, 2022 at 11:17 pm #34464
@mamabear007 for some reason I’ve been thinking about you a lot today. How are you and your family doing?
May 26, 2022 at 9:48 am #34471
Thank you for asking, @colleensteele. Both hubs and I had COVID earlier this month, but I think it must’ve been the Omicron variant. While we both felt like crap, we weren’t as sick as we expected. We’re both testing negative now and (mostly) recovered. Just tired a lot. All three kids are doing well.
May 26, 2022 at 1:21 pm #34475
Darn it @mamabear007! I am so sorry to hear that you and your husband caught Covid of any variant! It must be such a relief when the negative results pop back up again. Hopefully the both of you can get more rest over the weekend? Glad to hear the “kids” are doing ok. They will always be our babies, won’t they?
May 27, 2022 at 4:58 pm #34500
Thank you @jenc and @colleensteele. Definitely ESP or intuition. Yes, our kids will always be our babies. I’m having a hard time accepting that my oldest “baby” will be 44 this year! Too bad I don’t have some ruby slippers that will let me click my heels together while saying, “There’s no time like being young…” ????
May 31, 2022 at 11:22 am #34512
Oh, so true, @mamabear007. My baby girl is almost 30 and keeps reminding me of this. Like you, if only I could turn back time. Those ruby red slippers may work; maybe we should find a pair and share, perhaps?
How are you and your hubby doing this week after a holiday weekend? Are you almost back to your usual selves?
Big hugs from one moma bear to another.
May 31, 2022 at 11:28 am #34513
@jenc, our weekend was pleasant. However yesterday was interesting. I spent it cleaning up the water in the bathroom and throwing away things that couldn’t be salvaged. Hubs spent the day driving into town to buy toilet parts and fixing the toilet. It could’ve been much worse. When I told him what the toilet had done, he was sure we would have to replace the entire toilet. Thank goodness that wasn’t the case!
May 31, 2022 at 12:24 pm #34524
Oh no, @mamabear007! I’m sorry about the toilet mishap, but thank goodness your hubby didn’t have to replace the whole toilet. It still sounds like a messy kind of day. Hopefully, your week goes much smoother now.
Now, let’s get back to that pleasant weekend, right? When will your baby be 44?
May 31, 2022 at 12:41 pm #34525
Thank you, @jenc. Today’s a good day.
My oldest baby will be 44 the end of the year. My youngest baby (the one with CTEPH) won’t be 44 for another another decade. 🙂
May 26, 2022 at 1:12 pm #34472
Oh dear, @mamabear007, I’m sorry that you and your hubs have had COVID. I’m happy to hear that you both are almost recovered and the kids are all doing well.
I think @colleensteele has some type of ESP because she senses when something is going on with someone. Maybe that’s part of being of mom, but she does this with others, too, like you and I. Hehe.
I’m sending you cool breezes and warm sunshine as you both fully recover. Let’s not forget the hugs and prayers coming your way. Take care, and let us know if we can support you in any way.
May 26, 2022 at 1:17 pm #34473
This morning, a few others popped into my mind that we haven’t heard from lately. How are things @dawnt? How are you doing physically and emotionally after such a tragedy?
@jimi, how’s your swelling been? Is your dialysis continued 3x per week, or did they increase? I know that’s draining on you.
Please let us know how we can support you all and how you’re doing.
May 30, 2022 at 1:25 pm #34505
Hi @jenc. As much as I hate to admit it, I’m still struggling with my depression. Things seemed to ease up some, but I just keep finding myself in that ‘down’ frame of mind. I still talk with my therapist, but it’s mainly video meetings and she will be retiring in the next year most likely. I’m having a very difficult time with that. My brother seems to be doing better as we get more time passing since my former sister in law’s suicide. I know it’s something that will probably never leave him fully, but he’s doing much better with day to day life compared to the first couple/few months after it happened.
Thanks for thinking of me Jen. Even though I know it’s probably not the best decision, I’ve always tended to isolate when my depression is acting up. I do read posts, just not sure how much I have to offer that would be helpful lately.
May 31, 2022 at 12:31 am #34510
Hi Dawn. We haven’t met but I just wanted to reach out to you when I read of your bouts of depression. I have a close cousin who suffers badly with anxiety and depression, so I know what it’s like. I’ve only really had brief bouts that I’ve been able to brush off by giving myself a good talking to. No, I’m not suggesting you do that. But music – does that help you. When I have health problems with my heart and PH, I sing to myself and laugh – some think I’ve lost my marbles, but who cares. And you don’t need to offer help when you’re feeling down, so don’t concern yourself about that. I am sitting inside with layers of warm clothes on and the radiator warming the room. It’s very windy outside and about 15 degrees C, but sunny. I am in Australia, so Winter is coming on now. What’s that song – Forget Your Troubles and Just Get Happy… Cheers
May 31, 2022 at 11:33 am #34515
Hi @auntlizzie, I love reading your caring post to @dawnt. Like you, I tend to lean on music and comedy movies so I can laugh when things get too rough. I also find time outdoors helps me. But unlike the cold in Australia, it’s about 70 and sunny here, so that extra Vitamin D, I’m sure, offers a boost.
Dance like no one is watching is a song that pops into my head when I read your post. Take care and keep dancing and laughing, my PHriend.
May 31, 2022 at 11:30 am #34514
Oh, @dawnt, I’m so sorry to hear that you struggle with depression. Like you, I isolate myself more when I’m in a “funk,” and I had been in one a few weeks but feel like I’m on the upside now. My anxiety is not like your depression, but I can relate in a small way, so my heart goes out to you.
I can imagine knowing that it’s nearing the time for your trusted therapist to retire isn’t helping. Did you mention before that you had already met the new therapist you will be seeing?
I wish I had words to help. Manny ad I did a bike ride on Coronado Island over the weekend. We took a ferry there and back, and it was a reset perse for me.
Like @auntlizzie mentions, music helps me cope often, and I also watch comedy movies so I can laugh once I can sit and get into one. What about your horses? Have you been going and working with them lately?
I’m happy that your brother is doing better. But I’m worried about you, my PHriend. PLease know I’m sending you positive thoughts, prayers, and hugs. Maybe a little San Diego sunshine will help, too, sending it all your way.
June 2, 2022 at 1:03 pm #34568
@dawnt I responded to your update last night and just when I hit send, my internet conked out! I’ll try this again.
We have all used the forums in two ways, sometimes we are the ones helping and sometimes we are the ones who need help. We don’t keep tabs on how long a member needs one or the other. So please, never hesitate to reach out…and you never know, you might help someone feel less alone by sharing your own struggle. But of course just reading the forums is welcome too. We will never pressure you to share.
I’m sorry you are still struggling. I think what is valuable to point out is that you acknowledge that you are. That is a sign of strength – someone who wants to feel better and will make the effort to do so. I agree that it would be best if you find a therapist to take over when your current one leaves. I’ll keep that search in my prayers.
June 2, 2022 at 7:45 pm #34578
Thank you, Colleen, for the kind reply and the prayers. I’m slowly accepting that it’s best for me to have another therapist once my current one retires. I never used to talk about my depression with anyone except my therapist, but have done better (usually) over the years reminding myself that it is an illness like any other illness. I talk about my ph, crest syndrome, arthritis, heart issues, etc. etc., and depressions is just another illness that I’ve struggled with. There is still such a stigma about depression, I think, but I’m usually pretty good about knowing who it’s ok to talk with and who it isn’t. I am fairly comfortable sharing my struggle with depression here on the forums, but the biggest thing that gets in the way even with my therapist is shame at my inability to totally get past depression. I can acknowledge that I’ve come so far from when I first started therapy, but these flare ups are extremely frustrating. Totally ‘normal’ and to be expected according to my therapist, but some reassurances just don’t register when I’m in the midst of struggling. It’s definitely a help to feel that whatever I feel I need on the forums is ok.
June 3, 2022 at 9:09 pm #34589
@dawnt while we worry about what others think of us the reality is it’s more about what we think of ourselves. It’s more important that we focus on how we see ourselves and try to turn negative thoughts into positive by focusing on our values and strengths – which we all have but tend to overlook.
I realize I’ve never met you in person but the woman I have come to know through the forums is kind, passionate about her animals, friendly and wise and someone I enjoy hearing from.
You will get out from under this dark cloud and when it returns, you will get out from under it again, and it’s ok that storms come and go.
June 4, 2022 at 9:52 am #34593
Thank you, Collen. I totally agree that it’s most important to work on what we think of ourselves. We can’t control at all what others will think of us, and our responsibility to ourselves is our priority. I tend to forget that, or not do it, when my depression acts up. I appreciate the kind words of who you’ve come to know me as.
I am slowly turning things around these past few days. Finally! I think it’s partly from sharing here on the forum, which helps to break the hold that shame can get during depression. I’ve also opened up some to a couple co-workers I’m comfortable with.
Life is full of ups and downs. The ups can be fantastic, but the downs can be really hard. I need to remember that it’s not ‘me’, it’s just life. I have the tools from therapy, and my own knowledge and strengths to get through whatever I need to. I need to remind myself of that as often as it takes for me to remember it and believe it!
May 31, 2022 at 8:08 pm #34538
Thank you, @auntlizzie, for your kind words. Music and singing does help me feel better, I’ve always loved singing. I probably need to give myself a good stern talking to, which I do actually do sometimes! There just seems to be something ‘off’ that I’m struggling getting past. I know I will, I always have, it’s just been harder this time. We are still on a hybrid work schedule, 3 days in office and 2 at home. I just turned off my extra room heater about a week ago for where I sit when working at home, but still cover up with a blanket at times. I had two, sometimes 3 layers on during the winter! Sounds like you’re all set, though, so have a beautiful and warm (at least inside) winter.
May 31, 2022 at 8:36 pm #34539
@jenc, thank you also for your caring and kind words. I don’t yet have another therapist to work with when my therapist retires. My therapist is helping me find one, but there aren’t many in town any longer that take my insurance or that are taking new patients. My preference would be to not work with anyone else, but I think I need to at least have someone I can contact when my depression kicks up like lately. I hate that I feel the need to have someone, I expected to be done with therapy before now, but I guess it is what it is.
I do still go to the farm and hang out with the horses. I don’t do anywhere near as much work as I used to, between my breathing and arthritic knees, but I love grooming and just being around the horses. Of course, my boys (my two dogs) keep me going too. I absolutely love working from home and being with them all day.
Thanks for the positive thoughts, prayers, and hugs Jen. Same to you, and I’m glad to hear you’re feeling like you’re getting out of your funk.
June 1, 2022 at 10:26 am #34547
Hi @dawnt, I’m sorry that you’re still looking for a therapist to cover you when yours retires (insert sobbing face). It must be challenging with not many accepting your insurance. I do think having one ready is essential. Try not to be so hard on yourself. Therapy is often for life, and that’s OK. Remind yourself that it’s like any other member of your healthcare team. You need them all on board to keep your body and mind in check perse.
I’m so sorry you’re uncertain about what is holding you back from moving forward with this bout. My heart aches with you. This must be so frustrating and unsettling. I can imagine knowing that you need to find a new therapist is a huge part of your depression after working with yours for so long.
Thankful that you continue to spend time with the horses. Sitting and brushing them and doing any little thing, as you are near them, interacting, I bet, is helpful. You love them, and this is something you need in your life. Any dose of positivity is generous.
Yep, those self-talks are essential. Some seasons, I find I need this daily and some throughout the day.
Maybe the temps will start to warm soon. I’ll keep sending you a burst of sunshine when I can. Perhaps interacting with co-workers helps or hinders your progress?
Your boys probably love when you’re working from home. Are you struggling more on the days you go outside the house to work or on the home days?
Take care of yourself, and please know we are here to support you.
June 2, 2022 at 8:06 pm #34579
Thank you, @jenc, for your support. I agree that my therapist retiring is a big part of what I’m struggling with. It takes me a long time to trust, and open up about personal things, and I hate thinking about needing to try and do that with someone new. I don’t find much difference in how I feel whether I’m home or at work, as far as the depression. The best part about being home when things are ‘off’ is having my boys with me, and I don’t have to ‘pretend’ that everything is fine. That gets so tiring, sometimes even when I’m not having a flare with depression! My home has always been my ‘haven’. Once I’m on my way home, turn in to my street, then my driveway, it’s such a relief. Even when things are going well it’s that way, and when things are difficult I can’t wait to get to my safe haven with my boys. Hanging out with the horses, especially one to one grooming, is the same way. I am very blessed in many ways. The acceptance I’ve found with you, Colleen, and everyone here on the forums is one of those blessings as well.
June 6, 2022 at 7:47 am #34606
Hi @dawnt, indeed, opening up to others is not easy. I can relate. But I also know that once we do and find someone we can trust, it helps us more than we realize. I know your current therapist has been with you through some challenges, and you have built that relationship over time. It will take time, but you will find someone you feel comfortable with again.
Reading your post reminds me of how I feel when I get in my bed at night. I look forward to that now. IDK if it’s as I get older or what. Your love for being home in your “happy place” with your boys is where you feel best. I smile as I picture you driving up, approaching your driveway.
As you count us as a blessing, we also count you as a blessing, Dawn. Although we are distanced by miles and have never met, we connect here. Keep doing what you know makes you happy, and eventually, you’ll be pat this dark season, my PHriend. You got this! You’ve shared so many examples of you coming through many dark seasons, and you will come through this one. But you’re never alone, and we are here to support you.
Hugs, love, and prayers are coming your way.
June 8, 2022 at 4:20 pm #34642
Thanks, @jenc. I’m the same way with going to bed. I’ve always loved bedtime, and sleeping in the next morning as often as I can. With the cpap machine, I think now that when I go to bed it’s the easiest I breathe all day. I find it very comforting.
Since I’ve shared my struggles with my depression here on the forums, I think it’s only fair to share that in the past week I’ve seen a very good change in my frame of mind. I’ve been really using the ‘tools’ I’ve learned in therapy to talk to myself and I’m seeing very good progress! Changing some things that need changed, and trying to be as kind to myself as I can. The relief is very welcome.
June 8, 2022 at 4:47 pm #34644
@dawnt I love reading that you are noticing an improvement in your depression. “Trying to be as kind to myself as I can,” is something I think many of us occasionally need a reminder to do. Thank you for encouraging by experience that be kinder to oneself does make a difference!
Your progress will remain in my prayers!
June 9, 2022 at 1:44 pm #34657
Yay, it’s great to see that you’ve noticed some improvements in your mindset and depression since sharing here, @dawnt!
Allowing ourselves a little grace and kindness is often more difficult than one thinks. Kudos to you for working with techniques you’ve learned in therapy and now seeing that payoff.
Keep doing what helps and be kind to yourself. We are here to support you and hope you continue to notice improvements. Take care, my PHriend- hugs.
June 1, 2022 at 5:39 am #34541
Do you ever get the feeling your a tennis ball being hit from one medical expert to another. Aside from tests I have forgotten about I am tomorrow having my third transthoracic echo in six months . First echo ordered by cardiologist;showed pressure at 65, he says not to worry and sends copy to my PH bloke who looks at it puts me back on tadalafil and mentions a leaking valve so orders another echo to be sent to my cardio bloke. He looks at it and brings up great images,in colour, of my ticker that rotates showing all sides and arteries including the stent and tells me it looks great my breathing issues definitely back in the PH blokes hands and as the pressure was still 65 suggests another echo before I see him ,in two weeks to see what effect the tadalafil has had. His parting comment was not to worry there are some great drugs these days.On a lighter vein back in the eighties I did an advanced driving day with Porsche and one of the participants arrived by helicopter with ,I thought, his girlfriend. He was dressed like a ringer in winter in a drizabone coat and akubra hat ,changed into racing gear and joined us racing around the track. Great bloke for a Pom. At the end of the day everyone was getting an autograph from both so I thought I would line up and get them for my three teenage daughters. On getting the autographs as an afterthought I asked what band was he in again. The host ,who was not happy about everyone asking for autographs, rolled his eyes and Chris Dean from Torvill and Dean the famous ice skaters just laughed. Don’t ya love it when you make a dill of yourself in front of a crowd.
June 1, 2022 at 10:37 am #34548
Hi @terry, wow, I’m exhausted reading about the echoes and back and forth between the two blokes, hehe.
I’ll send some extra positive thoughts and prayers for round 3 today. That’s a lot of echoes within a few months. Hopefully, with the comment from your PH doc, they will add something to the increased tadalafil if your pressures are still at 65. How are you feeling as far as your PH symptoms, has that worsened or improved since increasing your meds?
Of course, you end on a lighter note. I’m convinced you were either a comedian or storyteller in your past. I almost spit out my coffee across my computer screen, reading about the autographs. Despite the challenges you are dealing with, you continue to add laughter to help ease the load. Take care, Mate, and please let us know how round 3 goes. We’ll be cheering for Team Terry!
June 1, 2022 at 2:02 pm #34559
@terry you really are a hoot. You put serious faces on us and by the end we are laughing.
In all seriousness though, I wish you luck with round 3. As they say, “Third time’s a charm”!
June 1, 2022 at 9:27 pm #34563
G’Day Colleen, Thanks mate. My attitude these-days is to always wake up with a smile and laugh at what roadblocks the world throws up. Mind you this attitude gets tested sometimes but hey life’s good. My ailments pale into insignificance compared to what I read on this forum . Now what I meant to add in my previous post but forgot was when we started driving around the racetrack after two laps the ex formula 1 Italian instructor flagged me into the pits and said words to the effect . ‘Your car has engine trouble ,no?’ I replied nope all’s good . He replied’well if I wanted my mother inlaw to drive your car I would have brought her GO FASTER.
June 1, 2022 at 5:49 am #34542
I tried editing out the ‘span <\> ‘ etc but it came up again .sorry
June 1, 2022 at 10:16 am #34546
Hey @terry, did you happen to write this is another page and copy and paste it here? That is usually when these types of things, called codes, pop up. I believe I took that out for you.
June 1, 2022 at 9:07 pm #34562
G’Day Jen, You are so right. Thought was I could stop and start post whilst watching telly and simply copy/paste. BTW your article about finding a new care team interesting. My past has been varied and exciting but no comedy career .
June 3, 2022 at 6:22 pm #34585Sherryl LeverettParticipant
Hi Coleen, I’m not sure how to use this forum. Any suggestions?
June 3, 2022 at 8:55 pm #34587
Hi @leverettsherrylgmail-com. The following links provide information on how to use the forums. Just click on the following:
I hope this helps. Please feel free to reach out to me or @jenc if you have any questions or run into problems using the forums.
June 6, 2022 at 6:41 am #34595
Hi @leverettsherrylgmail-com, @colleensteele shared some excellent resources above. Please let us know if those help and if we can help you as you learn more about the forums.
July 11, 2022 at 1:28 pm #35063
It’s been a while, so I’m checking in with our awesome members. What’s new with you, and how can we best support y’all?
I’ll tag a few and others. Please don’t hesitate to update here; I can’t tag everyone on my mind.
How are things going, @carol-alexander, @dawnt, @traceyaustralianmigration-co-za, @jimi, @nancy-mcsweeney,@jenniferbeaty, and @auntlizzie? It’s been a bit since I’ve seen any updates.
July 12, 2022 at 10:12 pm #35107
Hi @jenc, thanks for checking in. I’m actually doing much better than I was. I’m still working with my long time therapist, but am also ‘trying out’ a new therapist to see if we’d be a good fit to work together when my therapist retires. So far, so good. I’m also having my depression meds reviewed by a new doctor (new to me) since I’ve had so many changes in my health the past 4-6 years. My current therapist suggested having my medication checked, and helped me find these new doctors. I finally opened up more about how difficult her upcoming retirement is for me, and it’s been a help to me. I’m happy for her, am counting down the years to my own retirement, but it will be tough not having that person I totally trust available any longer for regular appointments. She understands that, and is doing all she can to make it as easy on me as she can. It just adds to the debt I feel I owe her for so much help and hanging in there with me all these years. I was very blessed when I got her as a therapist.
I don’t remember if I mentioned it here on the forums, but I finally faced my fear and tried gel injections in my knees. There is enough damage from arthritis that they’ll never be 100%, but the decrease in pain has been far more than I thought I could hope for. I’ve only had one injection in each knee so far, am hopeful that I can get relief for some time with these injections. I knew how limited I was feeling in doing things before the injections, but didn’t fully realize how much that daily level of pain was impacting me until I got these injections. I’m sure that didn’t help the depression any.
As I said in another post to @brendad53, I’ve been really working on giving myself the same compassion I can so easily give to others. This last bout of depression flaring up was the worst I’ve had in quite a while, but I think I’m in a good place as far as turning things around. I’ve been on the forums reading, and it’s also been a help. Feels like I’m not alone, and it’s always good to feel that someone has had the same issues, feelings as I’ve had and has gotten through them.
July 14, 2022 at 1:02 pm #35133
Hi @dawnt, I’m happy to hear you’re doing better. Working with the new therapist isn’t easy after all the years with your current one. But it’s good that you opened up and let her know how much this is affecting you. That also helps you in the long run for being so open and honest. I hope that things work out with this one, and I know you’ll build trust over time. Just think back to how long it took to build that trust in this current therapist. You got this!
I bet the injections helping your knees are a blessing, too. THat should help you be more comfortable with the horses, too. Any improvements, as you say, are a plus!
Yeah, I saw that post to Brenda and applauded you for making self-compassion a new goal. IDK why it’s so much harder to offer that to others and treat ourselves poorly; that’s an important lesson to learn. Still, once we expect that from ourselves, we will adjust and do better at extending the same grace to ourselves as we offer others.
I’m grateful that you’ve been reading. I do worry when I don’t see your post in a bit. I know how you fall into depression, and we want to support you and remind you that you are loved and not alone.
November 1, 2022 at 1:02 pm #36308
We wanted to check in with everyone, and I will tag a few, but everyone is welcome to share how things are going for you this week. ( Yeah- it’s that time when I start nagging, JK.)
How are y’all @dawnt, @tervo, @ripple76, @jimi, @gayleward, @kakes, @mendo-bruce, @debbie, @auntlizzie, @jenniferbeaty, @stephanie, @robo2677, @tchapman, and @cathia-releford?
November 2, 2022 at 10:59 pm #36326Gayle WardParticipant
It’s so kind of you to ask.thank you .I’m doing well. I just finished my three month check up and other than an elevated BNP everything looks good. I just need to slow down a bit which is hard for me. How all is good with you. Warm wishes for a happy holiday season.
November 30, 2022 at 11:11 am #36673
Hi @gayleward, the slowing down part is always challenging! That is one of my greatest challenges. My hubby, Manny, often reminds me to “be still,” I think of the bible verse and know I can sit still for at least a few minutes.
I bet with the holiday season; this is even more difficult. Any plans? Or will you have a restful holiday season?
November 30, 2022 at 8:54 am #36663
I have been really out of the loop. I was sick for some of October and most of November, first Influenza A, then double pneumonia. I’m doing better now. The cardiologist doubled my Torsemide, so my BNP went from 146 to 52. PH is not curable, right? She said the PH would be gone once I was rid of the fluid and there is something else wrong with my lungs. My pulmonologist just wants me to lose weight. I’ve lost 15 lbs in two months, so I’m working at it. I’m tired of dealing with doctors. Do they really know what they are doing?
November 30, 2022 at 11:16 am #36675
Oh no, @debbie, not precisely how I thought you were spending your days. Bless you, dear! It sounds like you’ve been extremely sick and frustrated, too. I would be, too!
Is this a true PH specialist you see who is telling you these things? It would make me a bit angry and frightened when I know so much about PH, as I think you do.
Wow, 15 pounds in 2 months! Is that from all of the fluid of water and weight? I hope you are feeling better physically now, but I suggest finding a new doctor or a PH specialist and getting a second opinion. Hugs and prayers that you find someone who can better help you soon, my PHriend.
February 13, 2023 at 5:59 pm #37375
@jimi you have been on my mind lately so I thought I would check-in and see how you are doing. If you feel up to it and have time give us a quick shout-out. We are still here for you whenever you need your PHriends.
February 14, 2023 at 10:37 am #37384
Yep, it’s been some time since @jimi has shared an update; thank you for reaching out, Colleen.
I have not seen anything from @gayleward, @mendo-bruce, @kakes, @hussbutton, @carol-alexander, and many others. How is everyone doing this week?
@debbie, are you back from your vacation and recharging yet? You’ve been on my mind as I knew you were off enjoying a funfilled and well-deserved break.
February 14, 2023 at 10:52 am #37386Gayle WardParticipant
Hi Jen , thanks for checking in. I am doing well. I flew to Hawaii for the first time in years. I was very careful and didn’t catch anything. What a wonderful booster this time of year. I am blessed
February 14, 2023 at 11:24 am #37388
Hi @gayleward, That sounds lovely! I’m grateful that you had the opportunity to take that trip to Hawaii. How long were you there? Did you go with your family?
I’m thankful you were careful and didn’t catch anything while traveling.
That’s a weekly win, heck, a big win for the new year! Now, it sounds like you need to recharge. Thanks for sharing. Let us know some of your highlights on your trip.
February 15, 2023 at 2:07 pm #37418
Had a wonderful vacation. Learned a lot about traveling with PH on a plane and on a cruise. Did you know they have outlets on the plane? Our flight home was in the middle of the night so I was concerned about having to change out my battery on my POS, but I was able to plug it in. Great relief.
We would like our next adventure to be in Australia. However, I’m not sure how to get there. Is it possible to go from one plane to another to keep air time at 4 hours? Anybody know or have suggestions?
February 15, 2023 at 3:02 pm #37431
Hi @debbie, welcome home! I’m so happy to hear that you enjoyed a wonderful vacation. Yes, learning about traveling with PH is challenging, and we must learn little tricks.
Nope, no one of the planes I have flown on had outlets. But I love that! Which airline was that? Did you have everything you needed while on the cruise?
What did you experience that you thought may have gone differently as you traveled on a plane and a cruise ship?
Did you feel exhausted and now recharging, or did you rest in between activities?
February 15, 2023 at 11:09 pm #37434
@terry and @auntlizzie do you by any chance know the answer to @debbie questions regarding travel to Australia? She lives in North Carolina and is hoping to plan a trip to Australia. She is asking if it’s possible to go from one plane to another to keep air time at 4 hours?
Any other suggestions for her future adventure to Australia?
Debbie, I’m so happy to hear that you enjoyed your recent vacation and that everything went well!
February 16, 2023 at 12:54 am #37435
Hi @debbie , Colleen, Unfortunately as far as I am aware four hours not possible HOWEVER six to seven hours with a great break in Fiji would be.
Carolina to Lax , LAX to Hawaii , Hawaii to Fiji , Fiji to Syd. . Check out American Airlines , Qantas and Fiji Airlines. Spend a week on the Coral Coast in Fiji. for some R&R . Look it up , mate you will be saying Bula like a local ,knocking back the Karva and thanking me forever.
February 16, 2023 at 7:25 am #37436
@terry I love the idea of a break in Fiji! But I don’t know if my body can take the 6-7 hours to get there. I think I’m going to have to find a ship.
@jenc American Airlines and United Airlines both had outlets right at the seats in first class. I don’t know about coach. It was very convenient. Also, the handicap seating at the airport while waiting for the plane for American had outlets, United did not.
I had everything I needed on the cruise. Some things I found important were an extension cord with two outlets on it, a 4 ft (for walking around) and 7 ft (for sleeping) nose cannula, lots of batteries for my POC. My sweet husband carried around an extra battery everywhere we went on the ship. It would be nice to have a carrying case for the POC that would hold an extra battery, but that would make it heavy.
I was very concerned about the flight time and how my body would react. I had read other posts and I thought when I got off the plane I may have a breathing issue. The flight to LAX was 4 hours and 40 minutes. In the last 30 minutes, my back was hurting. I couldn’t get comfortable. I thought how uncomfortable the seats were, but I think the problem was my lungs. I pulled out my water bottle and it had collapsed which tells me the pressure in the cabin had changed. It was not the seats. When I got off the plane my back stopped hurting. So flight time or pressure? The flight back was only 4 hours and I had no issues at all. Another thing I was not expecting was that no one, be it airline or cruise security, knew what a battery looked like for the POC. We had more trouble with those batteries. They thought they were bombs I guess. If they allow POC, they should be trained to recognize them and their batteries. At Pearl Harbor, no bags are allowed. The soldier at the gate asked to see the green light on the POC. I thought how smart is he!
There is a lot of walking on the ship. We went on Princess Cruise Lines. I’d say it’s a little older clientele. There were scooters and walkers everywhere. I did not realize there are companies that can rent a scooter for your cruise. They will deliver it to your room and pick it up from your room when the cruise is over. You can bring your own, but if flying you may need to get one that folds and is lightweight.
Late for a hair appointment. I tell you the rest when I get back.
February 17, 2023 at 12:46 pm #37454
Wow, @debbie, thanks for sharing so many things you learned traveling and on the cruise. Those batteries and my machine often take my POC out of the bag and swab it. Other airports just let me go through with it and wipe my wheelchair.
That’s nice to have those outlets abroad planes. I always take my backup battery and don’t usually fly over 4 hours thus far.
You’re tips on extension cords, and other helpful suggestions will help others as we have the opportunity to travel.
Aww, now a hair appointment after that long vacation. Excellent self-care! I love it!!
February 16, 2023 at 2:08 pm #37439
@jenc I was not exhausted from the travel. This is totally opposite from vacations before PH. On the cruise, I was on my time. If I was going to have to rush, then I didn’t go to whatever would cause that. My husband finally realized how slow I walk. I practiced my ukulele, sat on the balcony to watch the water, watched TV, and napped. I’m home, and I don’t feel nearly as rested, my health feels worse and my sinuses are reminding me they live here. I’m ready for a vacation again!
February 16, 2023 at 5:07 pm #37444
@debbie it’s common to need a vacation from your vacation but probably even more so when battling a disease like PH. I hope things improve for you soon. If you haven’t already, make sure you are keeping your doctor in the loop with how you are feeling since you returned home.
I love that you play the ukulele! How long have you played?
Many years ago I bought my husband a ukulele for Christmas because he wanted to teach himself how to play. He dabbled but didn’t pursue it much further. We ended up donating the instrument to our kids grade school. The music teacher was thrilled!
February 17, 2023 at 12:50 pm #37455
Hi @debbie, yes, that’s the “pay to play” routine I refer to after an event or vacation. We often find we need to rest up for days or even weeks.
I didn’t know you played the ukulele! That’s so cool. I bet that was relaxing while sitting and watching the water. I find water to b therapeutic, pools, lakes, rivers, and beaches. I also tend to love water features in places. It always has such a calming effect on me.
Hopefully, getting your hair done without recharging will help you get back to your usual. If not, as @colleensteele mentions, let your care team know.
February 17, 2023 at 12:11 pm #37449
@colleensteele I learned to play ukulele on the cruise. So I’ve only had 8 lessons – and I think I’m a pro!! Not really. My cousin found an old ukulele and gave it to me for my birthday, but I think it needs some work. I gave my husband a dulcimer years ago, like 30, and he’s never played it. I may try to take it up. It’s a little bigger than a ukulele but still small enough to carry. Where I live both instruments would be welcome to the community. We have jam sessions on Main St. every Saturday, weather permitting. I think that would be something fun to participate in if I ever really learn to play well.
February 17, 2023 at 3:33 pm #37465
@debbie I would have never guessed that you picked up the ukulele on a cruise! Was that actually a part of the “things to do” cruise itinerary? How cool if it was!
That jam session sounds like a lot of fun! What an awesome community event!
February 18, 2023 at 11:41 pm #37470
Hi @debbie, I’m coming in a bit late on your earlier question regarding flight times – try the website flighttimes.com. Easy to use and it calculates for you. At about 15 hours across the Pacific USA to Australia you’ll need to get creative and perhaps go USA – UK – Italy – Singapore or something similar. I once experienced a 36 hour flight from Sydney to Paris, via Bombay, Delhi, Rome and managed to pick up shigella dysentery and spent 8 days in hospital while they tried to work out what was wrong with me. That was fun – NOT. I haven’t been able to convince myself to fly anywhere yet. Everyone I know seems to be on their second dose of COVID – all with little or no bad symptoms – lucky them. We should be getting our FIFTH jab very soon. Stay well – cheers.
February 20, 2023 at 10:10 am #37474
@auntlizzie thank you for providing Debbie with that website. That is useful information for all of us!
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