MemberJuly 12, 2022 at 10:12 pm
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.
MemberJuly 14, 2022 at 1:02 pm
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.
MemberNovember 1, 2022 at 1:02 pm
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.)
MemberNovember 2, 2022 at 10:59 pm
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.
MemberNovember 30, 2022 at 11:11 am
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?
MemberNovember 30, 2022 at 8:54 am
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?
MemberNovember 30, 2022 at 11:16 am
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.
MemberFebruary 13, 2023 at 5:59 pm
@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.
MemberFebruary 14, 2023 at 10:37 am
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.
MemberFebruary 14, 2023 at 10:52 am
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
MemberFebruary 14, 2023 at 11:24 am
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.
MemberFebruary 15, 2023 at 2:07 pm
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?
MemberFebruary 15, 2023 at 3:02 pm
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?
MemberFebruary 15, 2023 at 11:09 pm
@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!
MemberFebruary 16, 2023 at 12:54 am
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.
MemberFebruary 16, 2023 at 7:25 am
@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.
MemberFebruary 17, 2023 at 12:46 pm
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!!
MemberFebruary 16, 2023 at 2:08 pm
@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!
MemberFebruary 16, 2023 at 5:07 pm
@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!
MemberFebruary 17, 2023 at 12:50 pm
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.
MemberFebruary 17, 2023 at 12:11 pm
@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.
MemberFebruary 18, 2023 at 11:41 pm
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.
MemberFebruary 20, 2023 at 10:10 am
@auntlizzie thank you for providing Debbie with that website. That is useful information for all of us!
MemberJune 27, 2023 at 1:32 pm
I woke up this morning with a few members on my mind. We haven’t heard from y’all in a while. No worries if you aren’t up to comment. @carol-alexander @kakes @jenniferbeaty, @upshtcx, @mainegal, @gayleward, @crisincincy, @mrperry009, @catbrown, and @cathia-releford
We just wanted to let you know that you’ve been on our minds lately, and we sincerely hope you’re doing well. If you don’t mind sharing, we would be grateful for a short update on how you’re doing.
MemberJune 27, 2023 at 2:47 pm
Hi Jen! Thank you for thinking of me. It’s been crazy hectic over here…. In February Susie and I adopted a new dog and we named her Penny. However unknown to us, the shelter and our vet, she was pregnant and one night in early March she popped out 5 puppies! We’ve been fostering all and assisting finding them forever homes. It’s been a lot of work but well worthy of our time.
MemberJune 27, 2023 at 5:40 pm
@mrperry009 oh my gosh! Well I think puppy surprises are a heck of a lot better than medical ones! What breed? This and the last time I heard from you and Susie you were renovating your kitchen. How did that turn out?
It’s nice to hear from you.
MemberJune 27, 2023 at 8:48 pm
Hi Colleen, we hope you and your sons are well. We’ve seen your posts and have kept you all in our prayers.
We had to postpone our plans for awhile… I had to have minor foot surgery and needed about a month to recover, and then the puppies came and we’ve turned a spare room into a kennel. Hope to get back on track this fall.
Our best to you always,
Perry & Susie
MemberJune 29, 2023 at 12:56 am
@mrperry009 oh no! I’m so sorry to hear about your foot surgery! I hope recovery has gone well. Hope you are being careful on that foot while chasing puppies!
Thank you and Susie for the prayers! I really appreciate them!
MemberJune 28, 2023 at 12:58 pm
Hi @mrperry009, wow, what a surprise! We have a puppy, we got in March, she is 6 months old now, and one is a handful! I can’t imagine how much energy and time you and Susie have put into this. Yes, it’s all worthy, and each puppy will soon find a new home.
I hope you and Susie are taking time for each other when you can. Thanks for the update, and come back and let us know if and when you find homes for all of the puppies. I would probably become attached to those little ones so fast!
MemberJune 27, 2023 at 2:02 pm
Hi everyone. Been incredibly busy the last month or so. They’re just beginning the process of evaluating me for lung transplant. Holy cats, it’s a scary prospect no matter which was one moves, y’know? I will go through all the testing and grilling and water torture and whatever else they can devise to totally befuddle my little brain. I’m putting it all in Gods hands, plus my docs to keep me going in the correct direction. Fingers, eyes, legs crossed!
MemberJune 27, 2023 at 5:43 pm
@crisincincy getting evaluated for transplant is big news. Please keep us updated so we can support you during the grueling process. As you know, my son is a transplant recipient so if you have any questions feel free to send them my way!
MemberJune 27, 2023 at 2:03 pm
Hi everyone. Been incredibly busy the last month or so. They’re just beginning the process of evaluating me for lung transplant. Holy cats, it’s a scary prospect no matter which way one moves, y’know? I will go through all the testing and grilling and water torture and whatever else they can devise to totally befuddle my little brain. I’m putting it all in Gods hands, plus my docs to keep me going in the correct direction. Fingers, eyes, legs crossed!
MemberJune 28, 2023 at 12:54 pm
Hi @crisincincy, it sounds like you have been quite busy. What an update, transplant is a huge deal! I have not been through the process but have seen others go through it. As @colleensteele reminds you, her son underwent a transplant, so she is well-versed.
You’ll be in my thoughts and prayers. I know your faith in leaving it all in God’s hand will hopefully lessen some of the anxiety. Please keep us posted if you have a minute and a spoon left after going through this process.
MemberJune 27, 2023 at 6:04 pm
Wasn’t on the check-in list but I’m heeding the call anyway instead of continuing to procrastinate and telling myself “next time” every time a forum notice hits my inbox. I won’t say “I’m good,which reminds me of a recent Mighty piece (on responding to “How are you?”), but could say “better but it’s complicated.” From last August to just a few months ago has been the worst since before being diagnosed with PAH and beginning what my lung doc called an “aggressive regimen.” The light at the end of the is not an oncoming train, It’s not exactly a bright new dawn either. Hanging in there and inching my way back closer to where I was a year ago, without the unrealistic expectation of getting there. What’s been the most discouraging is having work out how to get back on my own without the support I used to have. On top of not being where I was, I now have chronic pulmonary clotting. No one has a clue why. My lung doc took a batch of echo slides to a hematology conference, so maybe I’ll find out.
MemberJune 28, 2023 at 1:05 pm
Hi @vanessavaile, I’m grateful you updated without being tagged. I can’t tag everyone, but I try to get several in at a time when their names pop into my mind. I can’t hold onto things too long in my brain; it will be mush.
I do like the answer, instead of “I’m fine”, which I often use, to “better but it’s complicated.” And bless your heart; you sound like your health is quite complicated.
The progression of your PH and new treatment plan. What are you taking now to help manage your PH? Clotting, too? I hope your doc will get answers soon, which may offer some relief from some of your complications.
Take one step, one breath at a time, my dear PHriend. Thanks so much for sharing an update. I’ll add you to my thoughts and prayers.
MemberJune 29, 2023 at 1:02 am
First, can I just shout out @vanessavaile! Honestly, I have thought about you a number of times recently and feel bad that I didn’t just tag you and ask how you are doing!
I’m so sorry to hear about the decline you have been experiencing and the struggle to improve. The clotting is certainly concerning. I hope a game plan for that is in the making and the condition cared for properly.
I wish the news was better but it is good to hear from you.
MemberAugust 29, 2023 at 12:23 pm
Hey, y’all, I wanted to check in with a few members. Of course, I can’t tag you all, so please feel free to update us if you haven’t already.
How are you doing, @kygon, @jimi, @ripple76, @mainegal, @carol-alexander, @kakes, @robo2677, @tchapman?
Please update us briefly and let us know how we can best support you.
MemberAugust 29, 2023 at 12:51 pm
I checked in a few days ago with comments about my medical experiences for August. My question back to you is how things are going? I seem to remember that you had to undergo an endoscopy. Years ago I was diagnosed with Gerds disease. I take a med for that and haven’t experienced any problems.
In any event we are rapidly closing out on August and in the past year our political environment has gone from bad to worse, our economy has gone from bad to worse, but, by golly we PHAers seem to be doing OK.
Thanks for keeping our group together. (I think you once told me there were 400 members.)
MemberAugust 29, 2023 at 4:00 pm
@ripple76 it’s good to hear from you. How are you doing? How is the writing coming along?
Would you believe we now have 1,265 active members! Keep in mind not everyone shares in the discussions. There are many who prefer to hop on the forum and just read. We not only include those patients and caregivers as members, we very much include them as PHamily and we will be here for them should they ever decide they want to chat with us.
I will let @jenc update you on her health.
MemberAugust 30, 2023 at 12:31 pm
Hey, @ripple76; my apologies if I missed your post earlier. It’s always good to hear from you.
Yes, last week, I had both an endoscopy and a colonoscopy. They were pretty uneventful for the most part. Several polyps were removed and sent for biopsy. I’m waiting for those results, but it should be OK.
As @colleensteele shares, we are well over 1200 members and growing! We are grateful to have such a supportive PHamily who help each other.
You’re right, we PHers do OK. We keep moving forward at whatever speed we can. Right?
How are things going with you and your lovely wife?
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