August 3, 2020 at 2:27 pm #26537
It’s hard to believe it’s August already! How have you all been doing? What were your weekly wins last week? What stands out as your biggest win in the month of July?
I had a big health insurance win in July and last week Cullen completed a few more 1st appointments with his adult team. One more to go and he will be officially transitioned.
I want to hear about you! Share your weekly wins!
August 3, 2020 at 4:52 pm #26544
@colleensteele, I love this! Just last night, I remembered that I have been slacking on weekly wins.
You had a massive win with the insurance, and you did not let down! You did an amazing job, and I know that your son is proud of you, too. I am! Insurance struggles zap you emotionally and physically. I am so happy that this ended up a huge win!!! Then, those first appointments that you have been planning for the last few months. I know that you both will be happy to have the last one done for now.
For my insurance, well, I am remaining hopeful. My PCP sent in his letter on Friday and why he wants me to see this neurologist. The neurologist will send in progress notes and results from my test last week once he interprets them. Just having the test done is step one, for that I am proud. Then, I made a brief trip to the beach; these both are wins in my book!
August 7, 2020 at 4:17 pm #26630
Happy Friday, y’all! This week, my win is that I made it to the lab the first time since my hospitalization. Of course, my hubby was “driving Mrs. Daisy,” as he says, but I made it.
I usually go every 2 weeks, but because I am not driving, I put it off. My PH nurse called earlier this week and said I needed them done and this week. I made the excuse that I could not drive. She knows my hubby is off on Friday, most weeks, and suggested to go then. I need to stop telling them so much, hehe.
What about y’all? What wins are you celebrating this week? Have a relaxing weekend and stay safe.
August 7, 2020 at 6:10 pm #26635
I had a pft yesterday, since my ph dr now wants one done each year. Preliminary results show that my lung function is a little better than it was in 2018 – when I was first diagnosed with ph and started medication. Hopefully the final results are the same, but I’m counting it as a huge win without waiting for the final results!
August 22, 2020 at 10:56 am #26881
Hi @dawnt, my apologies as I am not sure how I missed this win! This is great news to celebrate, even if we are a bit late to the party. Any improvements are always a huge win in my eyes! Did you hear back about the final results yet?
This week, I finally had a virtual follow-up with the Neuro, although not as much information as I expected. But, the CD of my MRI he needs came in already, and my hubby dropped it off. These are both my weekly wins! I also was out of the house for almost 6 hours yesterday to get labs and run errands with my hubby. I am exhausted, but that is the most I have been away from home in a while. And, yes, I was mainly along for the drive, hehe.
August 23, 2020 at 9:59 am #26886
@jenc, no apologies needed! You’ve had more than enough to be thinking about with your own recent concerns. I have not received the final results yet, but confirmed with the person who handles my sleep apnea that the results showed improvement. It usually doesn’t take this long for the final results, but hopefully I’ll have them in time for my video visit with my ph dr 09/15. I figure any results that are ‘things are about the same’, or any range of ‘doing better’ are great wins and I’ll take them.
So glad you’re closer to getting some answers. Waiting to hear the good news! I’m guessing that even though you were exhausted after your labs & errands it felt good to get out of the house for a bit. Take good care.
August 24, 2020 at 1:30 pm #26892
August 28, 2020 at 11:53 am #26974
Happy Friday, y’all! What are some of your weekly wins? As I said before, this can be any little thing. Did you go to the doctor and get positive or stable news? Did you take a short walk? Did you get out of your PJs?
Besides the massive win that God spared us in Hurricane Laura, I have another win. I did get in my pool yesterday evening and float a little and do some pool exercises. This is the first time that I have been in the pool for some time. It was so relaxing, and I could do some stretches and light exercises.
Let’s hear it, what wins can you share this week?
August 28, 2020 at 2:06 pm #26980
@jenc I was relieved to hear that you weren’t greatly affected by Hurricane Laura. Ah, being in the pool must have felt so good! Water exercises are the best!
Cullen stayed out of the hospital so far this week and his BP is so good he’s getting headaches from not being use to it. Still though, it’s a win.
August 31, 2020 at 9:49 am #26993
Thanks, @colleensteele, we were so grateful that it missed us. I am also thankful that Cullen stayed out of the hospital. I hope that his body is adjusting better this week to all of the med changes. I hope that in time the headaches will decrease for him.
I hope that y’all rested the weekend.
September 2, 2020 at 5:18 am #27030
I’ve been working really hard launching a business and I had been neglecting my treadmill. I’ve done it twice this week and I will try not to slip again!
September 2, 2020 at 2:08 pm #27054
September 2, 2020 at 12:52 pm #27045
September 2, 2020 at 2:13 pm #27055
Aren’t you tired of your nasal cannula always falling on the floor? I’m patent pending on a cover that fits over nasal cannula prongs when the nasal cannula taken off the face. It’s clean, convenient storage because I have to be very careful about infections. I have some hospitals interested in it.
September 2, 2020 at 2:32 pm #27058
September 2, 2020 at 4:26 pm #27070
THank you! Am I breaking any community rules if I say more? I do have a website up and an Instragram account. I’m not selling any yet. I expect to hit the market in the first quarter of next 2021.
September 3, 2020 at 9:04 am #27074
Anyone who is interested in knowing more about the nasal cannula prong cover can follow me on Instagram @o2living. That’s not a commercial plug. It’s my personal Instagram where I talk about working and living with supplemental oxygen and my entrepreneurial and personal journey.
September 3, 2020 at 11:17 am #27075
That works, @melissa-egtsgmail-com! Thanks so much. This must be an exciting new adventure for you. We do allow the sharing of items that others find is helpful. But, the IG account is perfect, especially since you are not yet selling these. Super excited for you!
How long has this been in the making?
September 3, 2020 at 2:45 pm #27082
It’s been almost a year now. I got tired of my nasal cannula always falling on the floor and hanging it over doorknobs and chairs that other people have touched seems like not a great idea, either. I couldn’t find one to buy so I made my own and kept on going!If anyone is really interested I do have a website up at jmhartfielhealthcare.com. Stay healthy!
September 3, 2020 at 2:48 pm #27084
September 3, 2020 at 3:54 pm #27087
September 3, 2020 at 6:25 pm #27092
WOW all these wins – all these positive vibes put out there when so much all of us go through can be overwhelming and energy draining Jen, Colleen, Melissa and Dawn share shout out WINS! It made my day, thank you. I am still having issue with fecal incontinence even with the implant of the stimulator, but, it is better and I remain hopeful. Another win this week – I had a check up with WA Pulmonologist including CT scans, echo, blood work up and my 6 min walk. Walk wasn’t the best but all my test came back a bit better than last Feb when I saw my Pulmonologist at UCLA. So good wins this week. Thank you everyone for allowing me to focus on the positive! 🙂
September 3, 2020 at 6:55 pm #27093
Great news Carol! So glad to hear your tests came back better than your previous ones. My last 6 minute walk wasn’t as good as I wanted, but overall I’ve been getting good reports. Funny timing, I just had an echo yesterday, but haven’t gotten the results yet. So good to hear your news!
September 3, 2020 at 7:42 pm #27095
Thank you Dawn. Hope your echo is better than last time. I don’t know about you, but I believe my 6 min walk was not as good is due to not exercising as I did before covid-19. Sending you good vibes for a good echo!
September 4, 2020 at 11:26 am #27105
Hi @cdvol3gmail-com, thanks for your support always. I am happy to hear your wins this week. I am grateful that your tests showed some improvement since your last. Any stability or bit of improvement is a win in my book!
With time and a few more adjustments, I am hopeful that you will see more improvements in fecal incontinence from the stimulator.
As you mention, the change in 6MW probably was effected by missing the exercise pre-CoVid. Fantastic job and hugs from Texas. <3
September 4, 2020 at 11:28 am #27106
September 4, 2020 at 11:38 am #27108
Hey Jen, thank you for your hugs- I get them! You are in my daily thoughts with hopes you will get some answers soon. Hopefully you can focus on the positive and allow that positive energy surround you with loving warmth.
Wouldn’t it be great when this covid-19 is under contol I could meet you and Colleen. It would be so special to meet 2 incrediable caring women and to give you both a hug for all you both do!
Hugs from WA ☺🐶❤
September 4, 2020 at 4:16 pm #27118
@cdvol3gmail-com yes! I’m so happy to hear that test results are showing some improvement. I know from what you said that you still have other struggles but hopefully even a little bit of positive news lifted your spirit.
It would be great to meet you someday and @jen as well. I pray a successful Covid vaccine happens soon!
September 4, 2020 at 4:22 pm #27119
September 7, 2020 at 1:19 pm #27125SandyParticipant
Hi everyone. Your stories, wins, challenges really encourage me so much. I am amazed at the strength and positivity that all of you display. I’m a very firm believer that a positive attitude is 95% of our battle in this journey.
I’ve had a good long weekend. Due to the cool mornings here in western NC these past 3 days, I have been able to work out in my flower gardens for about an hour and a half each day. Granted, I sit down to recover more often than I used to but boy did I get alot of weeding and pruning done. It felt SO good for my soul and it looks so nice to boot. I find that if I can get something done outside, my attitude benefits tremendously, so I am hope that Fall weather will be my friend.
I’m sending congratulations and caring wishes to all of you. Be well.
September 8, 2020 at 1:18 pm #27133
@sandydenn thank you for such a sweet and positive message! You and all of our members help create a nice balance between advocating for PH and supporting mental health.
Fall is my favorite season! I’m looking forward to displaying pumpkins and mums again and sitting on my porch enjoying a refreshing breeze. I can appreciate from deep in my soul how much gardening helps you on many levels. Best of all, it’s not the type of project you have to rush. You can take your time and enjoy as many breaks as you need. I’m so happy for your sense of accomplishment and having the fruits of your labor to enjoy!
September 8, 2020 at 1:44 pm #27138
@cdvol3gmail-com just checking-in to see how you are managing with the fires and smoke WA is experiencing. The smoke was very thick here in Kent last night. We were struggling a bit even with our windows closed. It’s very windy too which I think is causing smoke from CA and Oregon to drift our way too. I’m hope you are doing ok and that it’s not upsetting your PH too much.
September 8, 2020 at 2:13 pm #27139
Good morning Colleen, thank you for asking. The reason we sold our forever home in Mazama was because of the forest fires and smoke – sometimes you could not see the mountains across the Valley. The smoke here in Port Ludlow is not awful, but I am staying inside. This smoke is from the Ellensburg fire the strong winds coming from the East is the main factor.
I hope you and your family are staying inside especially Cullen. How is he doing?
And what good news about your insurance!! Great work woman!
Stay well and safe – sending hugs across the Sound! ☺❤
September 8, 2020 at 4:09 pm #27150
Hi @sandydenn, I am so happy to hear that you were able to enjoy a bit of gardening time. Those little things are what feeds our souls, right? Cooler temps will help, I am sure. Fall and Spring have always been my favorite time to get outdoors.
Thanks for your kind words. This group does offer positivity, and this is important in our PH journeys. Thanks for sharing this win. I am hoping that you will share more days out in your garden. Enjoy the new week.
September 8, 2020 at 4:11 pm #27151
September 9, 2020 at 9:15 pm #27168
Wanted to update on my echo results. The results are stable compared to the last one, which is good news. One thing my cardiologist wants to do, which we’ll do next week, is a transesophogeal (sorry if mis-spelled) echo. I have a mitral valve leak in my heart that I’ve had for a couple years. My cardiologist thought the echo showed that as being stable, but a colleague of his thought he saw some concerning changes. I’ve been feeling pretty good, so my dr thinks it’s probably stable but thought we should do this other echo to get definitive pictures to know the status of the leaking. I’ve never had one of these echo test, but I’ll be sedated so I shouldn’t mind too much! My dr is very aware of my ph, oxygen, sleep apnea, etc., and he’ll do this test at the local hospital as outpatient.
Hope everyone is doing exceptionally well!
September 9, 2020 at 9:31 pm #27172
@dawnt thank you for the update! A little good news goes a long way, doesn’t it? I’m not familiar with the procedure you have scheduled. I’m sorry you need it but it is best to double-check things, especially when doctors have different opinions. Like you said, hopefully things are better, not worse, but kudos to your team for wanting to make sure they aren’t missing something. Please keep us updated.
September 10, 2020 at 12:31 pm #27181
Hi @dawnt, this is a huge win! Stability is so important, and this is awesome news! It also sounds like your doctors are well versed in PH, and you work well with him. I hope and pray that the TEE shows stability as well. Please do keep us posted next week after this TEE.
I enjoy reading about everyone’s weekly wins, so share anytime, y’all.
Have a safe week, and keep PHighting!
September 17, 2020 at 6:28 pm #27296
Update on my TEE. Had the TEE done today, got good news! The mitral valve leak is actually better than what my cardiologist thought the echo showed. He said it’s pretty much normal wear & tear from aging, no tears or anything like that. He said it’s GOOD news. The procedure itself wasn’t bad, except for whatever they spray in the back of your throat to numb it before they actually get the sedation going. That stuff tasted horrible, and burned. My throat is still a little sore, but overall it went really well. The anesthesiologist was very aware of the ph, and told me afterward that I did great. She said I am a very strong woman, but I’m not sure why she said that. An extra bonus, I had planned to work after I got home after the procedure but the nurses & dr told me to take the day off. The discharge instructions have it listed, so I let my supervisor know when I got home that I was taking the rest of the day off as well. As usual, she was great about it. My two dogs & I had a wonderful 3 hour nap this afternoon!
September 18, 2020 at 10:19 am #27313
That is fantastic news, @dawnt. I am so happy to hear your positive news after your TEE. That is always a win when the test was better than we thought it would be, right?
Thanks for sharing your experience with the TEE. I can understand how this would be irritating to your throat. I have never had a TEE.
Another positive win is your supervisor’s understanding and that 3-hour nap! I bet your boys were happy for this long nap, too. That is an amazing start to the weekend. I am so excited to share this news with you! You are a strong woman, just as your anesthesiologist said!
Take care and take it easy over the weekend- hugs to you from Texas.
September 28, 2020 at 9:25 am #27424
Hey y’all, I was off Friday and had quite a busy weekend. I told my hubby that it was the busiest that we have been in months. (Busy in a good way, but still exhausted. )
Thursday evening, my hair girl closed her salon an hour early and did my hair. I am so grateful for her and wished that I would have asked sooner. My poor hair was beyond need. That in itself was a huge win for me already.
Friday was my appointment with the new neurologist. My appointment went pretty well. She does want to do a cervical MRI because I have not had one, only my head. She did notice an abnormal gait and some jerkiness, she said, just by some of her in-office evaluation. The most significant positive is no other big “seizure-like”-activity since July. She is not too concerned with any seizure disorders after reviewing my tests, and she spent a lot of time with me.
On Saturday, I watched my daughter compete in her first jujitsu tournament. I did not think that we would be able to go but made that, and she won 3rd place! I was so grateful to watch her as I have not missed many competitions and events that she competes in.
So, yesterday was slow for me and still today. I hope to hear your weekly wins. What wins can you share this week? Let’s celebrate them together.
October 9, 2020 at 3:19 pm #27671
Hey y’all, it’s Happy FriYay, again! This means we have some wins to celebrate. This week, my win is more about my mental health and boundaries. This week, I did better at saying No and asking for help. It was not consistent, but it was a start.
What can y’all celebrate this week? Watching 2 debates and not turning off the TV was another for me. If mu hubby as not watching, I probably would have, hehe.
October 9, 2020 at 3:36 pm #27674
@jenc I’m sorry I didn’t respond to your last week’s wins…I meant to! I loved the picture you posted on FB of you, your husband and daughter at her jujitsu tournament! The three of you looked so happy which made me happy.
Since last week you had your MRI which is a win…granted I wish you didn’t need it but every test is a step closer to answers and treatment.
You are doing a good job taking care of yourself. Keep saying no and asking for help when you need to. It’s hard for many of us to do that but it is so important.
October 12, 2020 at 8:44 am #27683
Thanks, @colleensteele, and no worries, I appreciate you. The jujitsu tournament was one that I was unsure of for a while. I Was nervous that the young kids would be there and a huge crowd. Thankfully, when she competed, it was not so busy, and all wore masks unless they were competing, etc. It was easy to keep distant, but I was a bit nervous about getting that close even for a pic with my daughter. It isn’t very comforting to go and do anything. But, I am grateful that I could attend and watch because it was her first time.
Yes, getting that MRI past me is a plus, so I hope I hear from the Neurologist early this week.
I am working hard to take care of and listen more to my body. Asking for help is so tough, but I agree many of us struggle with that.
What weekly wins can y’all share?
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