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What is on your medical calendar for September?
September just kind of slipped right in, didn’t it? What medical appointments slipped in right with it?
Share your schedule with us and let us know how we can support you.
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47 Replies
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Yes, September just slipped in and showed up so fast!
Let’s see; I know I have labs for my kidney doctor next week and will probably see her the week after. I also have a PH appointment later this month, but I am uncertain of that date—otherwise, the routine visits, like therapy, labs, etc.
How about you, @Colleen? Have you received any updates from your surgeon yet? I would love for you to get this moving and recover so you can move along. What about your cardio appointment? Have you also seen a rheumatologist while there? I know you haven’t had much time to squeeze it all in. Now it ‘s time!🤗🥊- PS- Stay hydrated!!😉
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@jen-cueva my surgery is the 13th. I need to reschedule the dermatologist and cardiologist but waiting until I recover from surgery. I see my internist tomorrow and need to ask her to refer me to a urologist for the kidney stones and a rheumatologist.
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Hi @Colleen I am grateful that your surgery is planned for next Friday! Can you believe that we will be almost halfway through September?
Hopefully, your recovery time will be quick. But while in recovery mode, you may call and schedule those appointments after recovering. Also, please let us know how we can best support you as you prepare for surgery and recovery.
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@Colleen Hi Colleen, I am so glad to hear your surgery is now scheduled for Friday. You will be in my thoughts and prayers 🙏 for a quick recovery so you will be able to schedule appointments with Cardiologist, Rheumatologist and Dermatologist. So much has been going on in your life you have not been able to care for yourself. It s time.
Sweet woman you have been in my thoughts and I have been very concerned for you. ❤️
How is Cullen doing his first week in College? And your parents, is everything pretty stable right now?
Please keep us updated on your surgery.Sending you so much love ❤️ and we’ll wishes for good outcomes and a speedy recovery! Lots of love!!
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Thank you @carol-volckmann as always for your care and concern.
Cullen is doing well so far in college. Here is something to laugh at…He told me today, “Mom, I need to do laundry!” I said, “Well, do it!” Big sigh, “But I don’t feel like it!” Ha! I predicted this dilemma!
Mom and Dad are doing ok. Dad’s arm is all better, so that is a relief.
How are doing? Any improvement since the last time you updated?
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Oh my, our sweet PHriend, @carol-volckmann, you are so lovely! 💐
PS- I am so happy you could post without any issues.
I know how much @Colleen means to us all. We all will have her in our thoughts and prayers on Friday as she goes in for surgery! But this makes my heart joyful. 💜🤗🙏
Colleen, that cracked me up; Cullen is talking about his laundry! Is that his first time?😯
Let’s hope and pray Mom and Dad continue to stay OK as you put yourself first for surgery and then recovery. Please let us know how we can best support you. Extra big hugs and love are coming your way!
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Thank you @jen-cueva . I won’t be on the forums Friday but I will try to send you a text to let you know how the surgery went.
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Yes, I know we don’t want you here Friday as you will be at surgery. But please do update me via text; I’m happy to share with the forum members.
Our thoughts and prayers surround you, my friend. 🙏Let us know how we can best support you. 🤗
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@Colleen Hi Colleen, you certainly made me laugh! What do you bet, the first time Cullen comes home he will be bringing all his laundry hehe!! They all do!
Prayers and best wishes with love ❤️ Friday!
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@carol-volckmann LOL, that’s so true! KK always brought hers home; she was 4 hours away for the first four years of college.
Does Cullen do his laundry at home? KK did some at home, but away at college, she didn’t do any, I don’t think. Some colleges have laundry services you can prepay for.KK had several friends at different colleges who used this service. I was like, that is setting up high expectations when they are out working in the real world without mom or affordable laundry concierge. 😂
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@jen-cueva his college doesn’t offer laundry services that I know of. Cullen knows how to do laundry, he just doesn’t feel like it. LOL. My fault for spoiling him while he was at my parents and doing his laundry for him. Guess he got a little too used to it!
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Oh yes, as we have linked minds, I can’t say anything to that because I do the same. KK is about to move out again, but no matter how old she is, I’m sure I’ll spoil her, too.
Yeah, it’s funny. They know how to do laundry but don’t want to. KK calls it the “laundry fairy.” She starts a load and leaves, so guess who finishes it? 😂🙈
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@carol-volckmann I’m certain he will!
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@Colleen They all do! I hope Cullen’s first couple of weeks are going well and he has begun to find his own rhythm.
Hope all goes well with your surgery Friday – lots of positive energy ✨️ prayers 🙏 and lots of LOVE ❤️.
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Hi, @carol-volckmann – I hope you are enjoying a lovely, cooler Friday morning. Thanks for sending it our way.
Below is an update on @Colleen ‘s surgery for you and all of our members.
I just heard from our lovely co-moderator that she is out of surgery. All went well and her friend is taking her home so she can sleep and begin her recovery. Please continue to keep her in your thoughts, vibes, and prayers. 🤗🙏
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Hey, y’all, I have a few on my mind this morning and would like to hear an update if you feel up to it. How are you all doing? @Nancy McSweeney , @Sally Hoffman , @Aunt Lizzie , @Jimi Mcintosh , @ky , and @DeLois Tweedy
Many others but would not even try to list you all. But we enjoy updates when you are ready to share. How can we best support you this month? 💜
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@jen-cueva Good afternoon Jen, sweet friend. I am sorry your labs were not what you were looking for but, as your nephrologist said ask yourself hw do you feel and do not get bummed about the numbers.<div>
I love how you always seem to find the positive – having coffee ☕️ with KK at a great little place in La Joya! You are an inspiration ✨️ ❤️!
It is very difficult to say Dr Bushyhead with a straight face but nearly impossible when he is bald 👩🦲!! I do like him and have started my lactose free diet and antibiotic is on its way. He is also concerned about my cirrhosis, thus more test.
Like you I feel pretty good except tired and fatigue, but then I have to get out there with Cloud and we both come back with our tungs hanging out 🤪!
Sending hugs and love to you and Manny rest well. ❤️
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Hi, sweet PHriend, you are so kind and thoughtful, @carol-volckmann .
Oh, I’m hopeful and sending you extra positive thoughts and prayers that this new restrictive diet and antibiotic works to offer you some relief. You’ve been dealing with this too long, my PHriend.
Yes, you’re right. We are not doing labs as frequently because I become discouraged and frustrated when my kidneys look horrible on paper or in labs. But it’s more about my overall picture and how I am feeling. (A Column is coming up soon, I know.)
When we have difficult days, it’s always good to focus on something positive that day, too. Some days, this may not come quickly, but I try to keep this mindset and push forward. You know that mindset, too.
OMG, Dr.Bushyhead with no hair- I can only picture him. LOL.
When is your liver test scheduled? Or do you know yet?
I can also relate to you and Cloud, with your tongues hanging out, exhausted. I’m sending extra large spoons and a dose of love and hugs. Your support is heartfelt and appreciated. 🤗💜🐶
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@Colleen YEAH Colleen, surgery went well, you’re home and recovering. Warm healing hugs and lots of love ❤️. <div>
@jen-cueva Glad you are now in cooler weather. I huffed and I huffed and I huffed some more and blew it right down to you! 🌬 🌬 🌬 It worked!!
Hope you have a restful weekend. Warm hugs too and with lots of love ❤️
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Thanks @carol-volckmann for the cool weather, warm hugs, and love. You know we had a pretty laid-back weekend. Manny has been suffering from allergies but is doing OK otherwise.
How about you, Dick, and Cloud? How was your weekend, and what’s on the agenda this new week?
@Colleen She says she has been doing well. Of course, she was sore after surgery, but I am so grateful to hear she continues to feel better daily!
Tomorrow, I have an appointment with my nephrologist (kidneys) and an EEG for the POTTS/Cardio specialist since I have a follow-up appointment later this month. All should be OK. I may not be on the forums tomorrow as I will drive to the main hospital for these. Some days, this is all I get accomplished!
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I’m saying extra prayers for you tonight @jen-cueva . Please just focus on yourself tomorrow. I’m hoping for good news when you are ready to share.
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@carol-volckmann and Phriends, I am doing well. Recovery has been smooth so far. Just doing my best to keep the area from getting infected. Glad it’s over!
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Hi @Colleen you make an excellent post. Although you are recovering from surgery, it’s important to keep an eye on the site. Infection can easily begin if the site is not kept clean and dry. I know you know, but some possible signs of infection, like redness, oozing, pain, and fever, to name a few.
Let’s hope and pray your recovery continues to go well and no issues with infection. 🤗🙏
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Hello friends! I haven’t posted for a while, but read the forum often. Sounds like everyone has had quite a lot on their plate. Colleen, hugs to you as you recover. Well wishes to your parents and Cullen as well.
Starting July 5 through August 8, I had 3 different hospitalizations, so have been busy with follow-up appointments. Finished up at end of August, but as was stated, September just slipped right in! Follow-ups continue in Sept. Actually I just got back from vacation on Sept 13. I have 3 doctor appts this week: Monday to pulmonologist, Tues to UVA (cardiologist), Friday to Wake Forest Medical in NC for annual radiation oncology check up. I also have a dentist, dermatology appointments and hemo/oncology f/u this month.
Carol, I thought of you and your hernia issues, as I have one too. I went to the surgeon last month, but we all thought we should get my heart and lungs time to settle down before pursuing surgery. I return there in 4 months.
On my first hospitalization, I returned home on oxygen. This is a first for me at home, and it is frustrating. I guess I haven’t gotten used to it yet. Or do you ever “get used” to it?
Jen, I’m glad you got to go to the PH Conference.
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Hi, @DeLois Tweedy , I’m sorry you’ve been so busy with hospitalizations and follow-up appointments. I’m grateful you did get a little vacation in between. However, it sounds like this month is already busy balancing appointments.
We are so happy you popped in to update us, and we are here to support you as you navigate another busy month of appointments!
Oh, the oxygen—I can’t say I am “used to it.” But I did have to learn early on how much it helps, so I would actually use it as often as it was ordered. I wish I could say yes. Some days are better than others, as you already know!
Please share your updates as you knock each appointment off your to-do list, my PH PHriend! 💜🤗
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Hello @DeLois Tweedy, my heart goes out to you. Your plate certainly has been overwhelming all the while you stay strong and keep your attitude on the positive side.
One of my hospital stays, I was sent home with oxygen. You’re right, it was difficult at first, but I was able to take walks again – that felt great.
Thank you for your thoughtfulness. As it turns out my hernia is pseudo hernia and ‘they’ say it eventually will go away.
Stay strong, stay positive and do keep in touch especially when needing to reach out. ✨️ ❤️
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Hi, @carol-volckmann , your words to Dee made my heart joyful. They remind me how loving and supportive our incredible members are for lifting each other. 🤗
But we are always here when others need a boost of positivity and remind one another that we are not on this journey with PH alone!💜
It certainly helps to keep an open yet positive mind despite the challenges PH and other health concerns bring our way.
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@DeLois Tweedy you have been a busy bee…and a sick one? Three hospitalizations? I sure hope after all the follow-up appointments you will be feeling better and life will be calmer. It is so nice to hear from you!
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Hi @DeLois Tweedy , how are things going for you this week, my PHriend? I know you’ve had a busy and frightening few months.
I’m sending you extra gentle hugs and much love. Please keep us posted when you feel up to it! 💜
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@jen-cueva hey Jen, you will be in my thoughts tomorrow along with positive energy ✨️. Going to the hospital and having one thing done and I am exhausted. I really hope all goes really well my sweet friend. Sending warm hugs, please rest after you get home.<div>
I forgot to tell you about Dr Bushyhead – we do like him. He wants an ultra sound of my liver and more blood work. He is also putting me back on a strong antibiotic and a lactose free diet uhg!!!
Glad to hear Many is feeling better, this time of the year it should be better.
Good luck tomorrow lots of love ❤️ sweet friend.
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Thank you, sweet PHriend, @carol-volckmann and all-. Yesterday was busy and although I didn’t get the news I was hoping for, I am hopeful we are on the best treatment routine for my kidneys and fluid retention. While my kidney function has slightly worsened, I am feeling alright.
My nephrologist and I can agree that instead of focusing only on the numbers, aka labs, we will try to focus more on how I’m feeling. She is a bit concerned about my ten-pound weight loss in just under a year. 🤗
However, I’m grateful KK drove me home. There, we did stop at a cute coffee shop/diner in La Jolla near the shore to grab coffee and a light breakfast before we went to the hospital and medical offices. 💜-
@jen-cueva darn labs! At least your doctor is happy to acknowledge how you are feeling in relation to the lab results. It’s like what I mentioned over the phone about transplant being upset with Cullen’s Kidney labs but the renal doctor not as concerned as long as Cullen is feeling well and there isn’t a rapid, on-going decline.
You have dealt with various health issued this year and I’m sure it has contributed to the weight loss. It is good though that they are keeping an eye on it. Maybe next time you visit that cute cafe you order the dessert with the most calories!
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Hi, @Colleen ,yeah, I know with Cullen, you know how important it is to focus on the overall picture, not just one lab or number.
You’re exactly right; my nephrologist and I could look at the trends via a graph on my kidney labs and discussed that when I’ve been dealing with other complications, my kidneys are not happy. My cardio is not pleased about still having diuretics. But my kidney and PH team knows we can’t cut them any lower because we have tried, and I retain a ton of fluid in a day or two. The issue is when I retain fluid, it’s mostly in my belly, then I feel so full and can’t eat much.
We are trying not to do labs as often because she knows I will be frustrated when I see those numbers. So, unless I am concerned, we will only do them every two months for her. We will see if this plan works.
You’ll also be proud—KK and I went to this cute little cafe we had on our list yesterday. We had only a cup of soup, half of sammy, and water. But we then ordered chai lattes and desserts to take home—one for each of us, Manny, and her girlfriend she was planning to see later. We spent the same amount on dessert as we did on our lunch. LOL.
We bought a variety so we could try several. They had so many desserts and it was tough to pick just one. LOL. But as KK reminded me, we can visit again. Manny has been working late on firetrucks, so he says he works OT to pay for my and KK’s adventures. We still have dessert for today left. 😉
Thanks for your continued love and PHriendship. 🤗
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@jen-cueva that cafe can become your special place to go when you have appointments. It can be your, something to look forward to! I love that for you!
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Hi @Colleen, yes, that cafe is so cute, and everything is homemade. They make three homemade soups daily and tons of desserts, including pies and cookies(the best huge gingersnap). But the place is quaint and reminded us of a local tea house where we would have lunch in Texas.
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@jen-cueva I love hearing this! It’s like the little family owned Italian restaurant near my parents that reminds us of our favorite in WA..
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Hi @Colleen , yes, I remember that Italian restaurant you loved and enjoyed so much back in WA! You always made me want to have dinner there. I may be in WA next year for the PHA Symposium.
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Hi @carol-volckmann , I hope the more potent antibiotics and lactose-free diet Dr. Busyhead orders will relieve you. I still laugh each time I think of his name.
Manny says thanks and he is grateful the allergies are not as bad as they were last week. 💜
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Hey, y’all. I want to share an update from our buddy, @Randolph Reynolds . Unfortunately, he had trouble posting it on the forums.
But Randy says,
<b style=””>“ All of you who responded reflect the incidious results of PAH and aging. All went well with my visit, last month, to a new PAH specialist. Six minute walk, lumg function, etc. He and his intern discovered that I had some edema. That surpirsed me so I am now on double diuretics. I was informed that too much salt will cause that. Since we moved into this retirement place, a bunch of old folks with push carts, I had been having trouble keeping my weight down. My specialist recognized the cause of retaining water is the high salt content used in this place in the meals.
The problem is that I’ve now lost too much weight. That has its own side effect. So now to get a lab check on my kidney function. Useally no issue with that except the lab has closed I have to go to the nearby town to get it done.
<b style=””>A majority of people here are widows. My view is that I’m in better circumstances. Yet everyone here needs prayer to keep their morale and quality of life on the up beat. Thankfuly there are only a couple days of the week that I don’t escape to do other things. Bless you all. The members of this forum are sort of an ’army’.”
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@Randolph Reynolds it’s really good to hear your last check up and that you like your new PAH doc. It really has been awhile since you were on the forum. I hope you will have an easier time getting posted.
I think a word or two to the chef there about easing up on the salt. You would think they would already know that is not healthy 😝.
Please take very good care, you are in my thoughts and prayers – stay safe ❤️
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@jen-cueva Hi Jen, how did it go yesterday? You must be exhausted so I hope you were able to take it easy today and rest. Sending loving hugs full of positive energy ✨️ and love ❤️
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Hi @Colleen and @carol-volckmann I did update a tad about yesterday in the updates on top.
But I am so grateful for both of you for your love, support, and friendship. 🤗
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@Randolph Reynolds we are happy to have you in our Army! The battle with weight is common for many PHers, often it’s a struggle to meet somewhere in the middle. A big problem with fluctuation is it can effect treatment. Hopefully they are keeping a watch on your labs and making dosage adjustments as needed. It sounds like you have a good medical team looking out for you so I’m sure they are on it.
Stay well and keep your spirits high! We will always be here for you!
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@Colleen so glad to hear you are feeling better. As they (whoever they are) one day at a time and then you will be able to make your other important appointments. Rest well dear friend you and your family are in my prayers. 😊❤️
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Thank you @carol-volckmann . Next week is busy, I’m picking Cullen up at college on Monday to take him to a lung transplant appointment. Tuesday I have a post-op check-up. Wednesday my parents have blood work and maybe an eye appointment but I might reschedule that. Friday parents have appointments with their internist. After next week I’ll start rescheduling appointments for myself.
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Wow, @Colleen you certainly have an overflowing plate this next week. Please take care of yourself and take those little moments to breathe in between. Between the appointments with Cullen and your parents, you will be hopping. Make sure you don’t overdo it, and get your SBUX each day as a treat!
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We will all be here to support you and pray that all the visits go well. 🤗
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Hi, how was your exciting weekend? I would think that was a Weekly Win plus! ☺
Also, how did Cullen’s transplant appointment go yesterday? I think your post-op appointment was sometime today. 🙏 I’m keeping you in my thoughts and prayers as I know once again you’re having a busy week between appointments, my sweet PHriend.
Please keep us posted when you have a few extra minutes to sit and gather yourself. Let us know how we can best support you.
Hugs and prayers that all appointments go well this week for you and your family! 💜💜
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