-
What is on your medical calendar for September?
September is here! Kids are back at school and jumping into new lessons and experiences.
What specialty clinics are you going back to this month? Is there anything new planned such as treatments or procedures? Would you rather be going back to school or are you feeling okay about your medical appointments this month?
Please share your hopes and fears for this month so we can support you!
-
41 Replies
-
Shrinking. Getting my teeth cleaned. Pulmonary rehab classes. And maybe, MAYBE, a trip to UCSD for a CTEPH evaluation. Maybe.
-
@brendad53 I am keeping my fingers crossed that your maybe becomes an update on the weekly wins forum post. Remember, you are stronger than you are stronger than you give yourself credit for!
-
Hi @brendad53, I hope you have that news to share with us soon. I love that you are “shrinking” this month. Hehe. How often do you shrink? LOL
I also need to schedule a teeth cleaning soon. I’ll add that to my task list for this month.
Have you continued your pulmonary rehab, or are you just returning to that?
You are an incredible woman, and I’m thrilled that @mamabear007 connected you to our forums. We enjoy your conversations and humor.
-
DeLois, I hope your wrist problem proves to be relatively minor and is soon healed.
Jen, I shrink every two weeks. What little sanity I have is due to regular shrinking!
No word from UCSD other than a call later Friday night telling me they had gotten my self-referral package from their mail room, so I know it’s where it needs to be.
In the meantime, certainly. I do pulmonary rehab.
-
Aww, shrinking is much needed, my PHriend!I shrink every three weeks, most often. It certainly helps what is left up there for me, too. Hehe.
Well, glad they called to let you know. Keep on thinking positively, and hopefully, you’ll hear back soon. @mamabear007, do you know how long it may be before she hears back?
-
@jenc, UCSD can take as little as a few days or as long as 6 months, depending on many things (how dire the health situation is; how long it takes UCSD to hash things out with the insurance company, etc).
@brendad53, I’ve seen several of the members of the CTEPH Facebook group who have been to UCSD recommend calling at least once a week to check on their progress of their decision. Many of them have said, “the squeaky wheel gets the oil.” Since so many of them recommend this, even though I don’t know whether or not my son ever did, I recommend it. It may help, and it certainly can’t hurt.
-
Will do, Mama Bear. I’ll gently inquire every week or so. Thanks for the tip.
-
@brendad53, looky at what I’ve done! I’ve created someone as assertive as I am! 😊
Makes me right proud.
-
Hi @mamabear007, Aww, yep, I get it! Thanks for the tip for @brendad53. I bet she will follow up with them weekly. That always seems to help to get things rolling.
The six months is too long. But know that things slip, especially if no one is following up.
-
-
Hi @Brenda Denzler, how are you this week? Any news from the UCSD CTEPH center yet? I’m knawing my nails in suspense for you, my PHriend!
-
-
Hi Colleen. Happy September! I have always liked September because it is the winding down of summer, and I look forward to fall.
My calendar is quite busy. I have a yearly dermatology checkup, a trip to Wake Forest Baptist hospital (NC) to Radiation Department for yearly visit, my 6 month echo and follow-up with my interventional cardiologist at UVA. One appt for Sept. 1st at UVA was rescheduled to November secondary to my doctor leaving the hospital there; the new doctor I will see is an advanced heart failure doc.
This is plenty enough for me, but unfortunately I will probably have others. I fell August 23 on my carport and hurt my wrist, so hours in the ER, now going to an orthopedic doc. Also have a nodule or something that has come up just below my hip bone that is rather sore, so will be calling PCP in the morning. My daughter is thinking it’s something related to the fall. There seems to always be something, doesn’t it?!
Wishing everyone a happy (upcoming) fall 🍁🍂
-
DeLois, I love fall in Carolina, too. It’s that feeling of starting to wrap up in a cozy nest. Of course, the downside is always the leaves. I am having more and more trouble trying to stay on top of them. I’d think about letting my yard to back to au-natural, but that would mean too much leave litter and hide-outs for snakes. With my grandkids still buzzing around here from time to time, I don’t want to lay out a welcome mat for the slithery critters.
-
@DeLois Tweedy how has busy September been going so far? I hope your recovery from the fall has been making progress!
Oh, I love the Fall too! It is my favorite season. There is already a crisp feeling in the air here in WA and pumpkin anything is on everyone’s menu! Like the old skit from SNL…It’s sweater weather!
-
-
Oh no, @deetweedy, I’m sorry to hear of your busy schedule this month and that fall! That spot near your hip could be linked to your fall. Is it on the side you fell?
Oh, my dear PHriend, please try and rest in the downtime with such a busy schedule. I know it can be exhausting mentally and physically.
Be sure to take care of yourself and prioritize rest if possible! I’m here for support if you need it – never hesitate to reach out. Stay strong and keep PHighting!
-
I intentionally haven’t scheduled anything for this month. I’m thrilled since October and November will be busy. Of course things can change at any time.
-
Hi @franboston, I don’t blame you for intentionally not scheduling anything this month. With a busy next few months, that shows you are prioritizing rest, or I would hope so.
You shared an important reminder things can always change. Although, I’m hopeful this month is slow for you, my PHriend.
-
Hi, @Fran Boston Reichel, are you still enjoying your slower September?
-
-
Brenda, I lived in NC quite a few years combined in 2 different times. I find that it is very much like VA, especially weatherwise. I certainly understand abt the leaves, I have lots of trees and woods where I live. So the falling leaves can quickly get out of hand. But I certainly enjoy the colors, sitting on my deck wrapped in a light blanket, sipping coffee! I plan to be in Winston-Salem tomorrow at Wake Forest hospital for a check-up.
<p style=”text-align: left;”>Jen, thanks for your concern. The place at my hip is on the opposite side from my wrist injury. But I did land on my butt, so it could be from the fall. I couldn’t get an appt with my PCP until Sept 12! But I was able to get an ortho appt for this Friday to check my wrist further.</p>
I will also be getting a bipap when the med supply calls me. I have mixed feelings abt this, but saw my pulmonologist last week as follow-up from the sleep study. He is concerned because I’m not breathing much during REM sleep. My diaphragm is barely helping out. Oh, I also have a dermatologist appt next week as well.I have no clue how so many things ended up falling on September’s calendar! Jen, you take care of yourself too. And Brenda, rake those leaves – no snakes allowed! Lol. We saw quite a large black snake going around the corner of the house the other day. Ugggg!
-
Hi @deetweedy, we lived south of Chicago for a few years back when KK was young. I LOVED the fall season. The colors of the leaves falling. Then, once the snow started, I thought it was Christmas time. But man, that can make a mess.
I’ve missed the seasons changing like that in Texas and now in San Diego. But I love the sunshine and the beach!
Good luck, and extra hugs and prayers are with you this month. It sounds like you do need that BIPAP. My hubby, Manny, wakes up feeling more rested since using his CPAP. He, like you, was against it for years. He says he should have listened to me about testing for sleep apnea before.
Hopefully, the DME company will set you up with yours soon, and you’ll feel more rested, my dear PHriend. I appreciate your support; this month is much slower than previous months!
-
DeLois, what do you mean that your diaphragm was “barely helping out” with your breathing one night?
A couple of nights ago I had a bad, bad, bad couple of hours with inability to get a deep breath. When awake, it felt like my diaphragm was impeded from movement or something. Yet I wasn’t retaining THAT much fluid. So I “grok” the idea of “diaphragm not helping out,” but don’t know what you mean by that? What is your experience with that?
-
-
Brenda, this was news to me as well at my pulmonologist appt, so I didn’t have questions prepared. Have researched a little since then by googling “what happens to the diaphragm during REM sleep”. Interesting reading.
My doctor told me that during light and deep sleep, your other muscles in the chest and the diaphragm works together to breath. But during REM sleep it’s mostly only your diaphragm working. Evidently mine did not work as well as it should, thus oxy saturation decreased and breathing was irratic and even stopped for many seconds. I had already been diagnosed with sleep apnea in 2020, and use a cpap.
This recent sleep study at the hospital was initiated by my active heart failire in June/July. My O2 sat was very low and I struggled with increased shortness of breath. Evidently, my sleep apnea is getting worse (?).
I’m not sure what was going on with what you experienced. However, I have had that experience many times as well. I do know that I supposedly have small lungs, scar tissue or small collapse at base of each lung, small bilateral pulmonary effusions and of course PH. So I figure that’s why I have trouble breathing deeply most of the time.
I hope you find some answers. It is unnerving to wake up like that and feel you can’t get in the air in that you need.
-
Thanks, DeLois. I have long noted the oddities with how my diaphragm works, from time to time. But I didn’t know it was a legitimate “thing.” I’ll use your search term to see if I can find more info.
-
-
Well, as suspected, appts for September has increased.i went to ortho last Friday and found my left radius was fractured from the fall in August (which they did not find at the ER when I fell). So I am now sporting a neon purple cast on left arm. Ortho also xrayed right hip and found nothing broken, thankfully, just a large hematoma. It continues to be sore. So that’s 2 appts added to an already full list. Awaiting call from medical supply for the bipap. So far, October is clear! Wishing everyone well with their September calendar.
-
@DeLois Tweedy agh! That’s awful that you have been living with the pain of an unknown fracture! Thank goodness it was finally picked up! Between PH and the cast I hope you like the color purple.
Please update us when your machine arrives. I’m anxious to here how that goes for you.
Fingers crossed that October will “Fall” right into an easier schedule for you.
-
-
Colleen, yes I thought the pain I felt for 2 weeks should have been getting better if it was only a sprain like the ER said. Thankfully, I have a high pain tolerance. The purple is in honor of my 10 1/2 yr old granddaughter. She has had 6 or 7 surgeries and purple is her favorite color.
Will let you know abt the bipap. I’m not looking forward to it because of the higher pressure, but hope I can tolerate it well since my pulmonologist thinks that’s what I need. My question: is this sleep apnea and PH related. I know my heart failure and PH are related, and I truly feel my heart issues/valve disease caused my PH. But, everything is so overlapped I may never know. Do you or anyone on the forum know if cpap and/or bipap and PH are related. I know many people on cpap that do not have PH.
Your “fall” pun made me smile. 🙂 It would be awesome if October stayed clear of appts so I can start the fall in a more relaxed way. I already have a few appts for Nov. 😒
-
That is a good question. My doctor said it could be because of un-monitered cpap use. but thinks its my asthama getting worse.
-
I started wearing a cpap about two months ago. From what I understand, if someone has untreated sleep apnea and it is bad it can cause PH. My sleep apnea was barely high enough to allow me to get a cpap. Now that I wear it, I think I sleep better – no snoring! But I’m still tired throughout the day. The pulmonologist was hoping it would help with my fatigue. I will tell you your mask is important. My doctor wanted a mask that covered my nose and mouth, but first night it rubbed a raw spot on my nose So now I use a mask that goes under my nose and over my mouth. Good luck with it.
-
Hi, @Debbie Moore; I’m glad to hear that you are sleeping better and no snoring. I bet your hubby is happy, too. Or is he also a snorer? Manny started using his CPAP and is also so quiet when he sleeps; I checked to make sure he was breathing the first few nights hehe.
It’s interesting because yes, it can cause PH an dso many other hralth condutions when sleep apnea is left untreated.
-
@Debbie Moore my husband would use dental wax for areas in which his mask irritated his skin. Most pharmacies cell it in the dental section. Patients use it for their braces.
-
Hi @Colleen Steele, interesting! I have heard of people using coconut creams, KY jelly, and padding for skin irritation. I will def keep the dental wax in my mind in case Manny needs to try something else for his.
On this point, it’s extremely important to clean the masks and change them frequently to prevent any type of dermititis and skin infection. Excellent tip, Colleen!
-
-
-
Well it started with a liver fibro scan, and lots of lab work for anemia, and low Red Blood Cell and platelets. Then I had a right heart cath yesterday. Which was good news on the results. Pressure went down over 20 points, and the doctor said the heart is very strong. I also have a dental appointment at the end of the month. I have thursday a foot appointment for a past injury, then finish the month off with my bosentian lab work.
-
@Erik , except for the anemia it sounds like things have been going in a better direction for you! Are you feeling the difference too? I hope so!
Best of luck to you with the remaining appointments. Let us know how they go!
-
Hi @Erik, it sounds like you have already had a busy medical agenda this month. I’m grateful to hear some positive news mixed in with anemia. Congrats on that wonderful heart cath! Twenty points lower is amazing! Do you credit this to your Tracleer, a combination of treatments, diet, and/or exercise?
Please do keep us posted as you continue pushing through a busy month or appoitments. Positive thouhts are with you, my PHriend.
-
-
I owe it to weight loss and exercise.
-
I wish I could give weight loss and exercise credit for something but I’ve been eating and slacking! Great job accomplishing what so many of us struggle with!
-
Fantastic job, @Erik! I am not doing so well recently with my exercise. I did get two days in this week. But my goal is three times per week, minimum. What types of exercise are you doing? I think you’ve shared some before about this. My apologies as I have forgotten already. It doesn’t take long for me to forget things anymore. Hehe
-
-
I just ride the bike. 3 to 4 times a week for 30 to 45 min. I want to include some weight lifting, but waiting for the ok from the doctor. 10 lbs is just not enough weight
-
That’s great, @Erik. I hope to get back on my Ebike soon and ride it more frequently. I have only 5-pound arm weights so far, so you are lifting heavier than me. But I get it!
-
-
Hey everyone, hope you’re all doing well as we approach the end of the month! If you don’t mind sharing, how’s your medical schedule looking for the remainder of this month? I know it can get pretty hectic. Also, how are you feeling?
@Tracey , @DeLois Tweedy , @Brenda , @Colleen Steele , @Debbie Moore , @Carol Volckmann
-
Aww, @Jen C thank you for including me in this.
It’s been a very busy September for Cullen. He is in NJ now and has been transitioning his care from the UW to UPenn, and doing it all on his own! It has been going well and I am so proud of him taking charge of his health the way he is. So far, he has seen heart and lung transplant and had several tests done. He is very happy with his team so far. Many more appointments are scheduled for October.
I have a few doctors I would like to see before I move to NJ but I really don’t know if I will have time. I’m on a crunch to get out to NJ sometime in October. Cullen needs me but most of all, my parents do, mom especially.
How are you doing Jen? Do you have any appointments remaining in September?
-
Hi @Colleen Steele, I’m thrilled to read about Cullen linking his new team so far! That’s awesome news and I bet it helps you not worry as much, too. I’m also extremely proud of him taking those steps to go ahead to NJ on his own and also travel to and from his appointments alone as he takes charge of his care.
Please do try and make time to fit your appointments in. I know when you get to NJ your care may be on hold and I worry about that, my friend.
What’s going on now with your mom? I know you’ve been concerned about her for a few years. You continue to balance a heavy load, my lovely Colleen. Please know you and the boys continue to be in my thoughts and prayers. We need a catch-up call soon. I miss our chats! But now you have a ton on your to-do lists.
I’m here and happy to help in any way. -Love and hugs coming your way.🤗
Oh yeah, I have labs for my PCP and Rheumy on Friday and I think after that I am done for the month. Thew first week of October I have another Echo and a few other appointments. But trying to get back to a stable point for me. Eating a little better and holding down food, that’s progress! Thanks for asking.
-
-
Log in to reply.