How jam-packed is your June this year?

[elaine]

I’m planning on traveling to Canada at the end of June, flying. I’m a judge for baton twirling competitions and I’ve been asked to judge there which is quite an honor. I am also in the process of getting my own baton twirling and pom pom students ready for a Fourth of July parade. Finally, I am still teaching piano and playing piano at both the Menards in our area and as praise team leader for our church. Believe it or not I do all of these things on only 3 days every week Sunday, Monday and Thursday, those are the three days I’m out of the house. The exception is Canada I will be out on Saturday that day in addition to the Sunday. I don’t consider that really jam-packed is only 3 days a week. But I do believe you should go out and live life to the fullest everyone.

[jen-cueva]

Hi @ejones9bbw, wow, what a fascinating hobby you have! Judging baton twirling must be fun, and traveling is sometimes enjoyable yet tiring. How do you manage so well?

I took piano lessons as a child, yet I am not musically inclined. However, I love listening to those who can play piano well. That is one f my Spotify playlists to write to.

I LOVE your outlook on going out and living life to the fullest!

Do you have any medical appointments this month, or only these enjoyable activities, which I prefer any day?

[debbie-moore]

@ejones9bbw Oh the memories you just brought back for me!  Thank you.  I remember taking baton lessons when I was young.  I loved it.  To be a judge you must be top-notch in that field.  Congratulations!

[Colleen]

@ejones9bbw you are so talented and I love how you inspire that talent in others! You mentioned Canada. Has the fires been an issue for you this week? I hope you are staying sage and well!

[Colleen]

@ejones9bbw you are so talented and I love how you inspire that talent in others! You mentioned Canada. Has the fires been an issue for you this week? I hope you are staying sage and well!

[Colleen]

@ejones9bbw you are so talented and I love how you inspire that talent in others! You mentioned Canada. Has the fires been an issue for you this week? I hope you are staying sage and well!

[elaine]

I’m not due to go to Canada until June 30th. The air is filtering down here in the US as you know. Here in Illinois we have what’s called a moderate alert. I was out today and it didn’t bother me though. How about you, is it bothering you in your area?

[jen-cueva]

Hi @ejones9bbw, I’m hopeful that the fires and smoke will not happen when you visit Canada at the end of the month. Thanks for letting us know that it wasn’t bothering you much as of Friday. How about now? I hope and pray you are still doing alright.

Here’s a topic that another member in NC shared over the weekend. I also linked an older post about wildfires in my reply to her.

Wildfires in Canada

Take care and stay safe. Please keep us posted on how you are managing.

[delois-tweedy]

So far, my “medical” June calendar is rather open. Hope it stays that way! Last of May I saw my pulmonologist; my CPAP is still losing the seal at night, so I tried another type, but went back to my old one- just tried to tolerate tightening it a little. Saw my PCP and had labs. Very sad and scared that my A1C is up slightly – I have never, ever had trouble with diabetes or pre-diabetes; trying to work on this with diet (I’m already a healthy eater) and more exercise. On a good note from that visit, my thyroid looks good, so no increase in meds.

The rest of the month looks clear except for dance recital (ballet, hip-hop and jazz) with my 3 granddaughters. And my husband has fasting labs/doc appt and also has an eye injection (I have to drive, obviously).

With the warmer weather, I’m thankful for a less than usual busy calendar (so far lol). I enjoy being home and enjoying each day and the sunshine. 🌞

[jen-cueva]

Hi @deetweedy, I hope that your medical calendar stays lowkey. However, you’ll be busy with your granddaughters and enjoying soaking up Vitamin D!

How old are your granddaughters?

Hopefully, tightening your mask will help your CPAP fit better. Can they have the respiratory therapist come out and see what may work better for you if this doesn’t?

Please keep us posted on your A1C; I hope it’s not high, my PHriend.

My hubby, Manny, was recently diagnosed with sleep apnea and awaiting his CPAP fitting. He’s not thrilled about this, but I diagnosed him(not a doctor) years ago. Thankfully, he finally went in, and the cardiologist ordered it.

[jen-cueva]

Yesterday I had a follow-up with my PH doctor. He was grateful that I was improving after the steroids and breathing treatments to offer relief from atelectasis. He reminded me to be patient with everything my lungs (body) have been through lately, and it will take time to bounce back to my baseline.

I finally have some of my taste back after this latest COVID. So that should help me take in more nutrients to help me recover and build my strength.

Echo ordered next month to allow my body more time to recover.

This afternoon I see a rheumatologist, so sure she will order labs and who knows what else. Then therapy session Thursday. Next week is my well-woman exam that was scheduled last year.

How’s everyone else’s calendar looking this month? Let us know if anything is going on that we can provide support for.

[debbie-moore]

@jenc you have quite a few doctors to see this month.  I hope you have good results.

[jen-cueva]

Thanks, @debbie; I appreciate your positive thoughts, my dear PHriend. What are the two appointments you have scheduled this month?

I admire how much you’ve been traveling! I’m hoping to travel more each year. So many incredible destinations are just waiting to be discovered, yet the challenge seems to be juggling time, finances, energy, and my health. Hehe.

[kygon]

@JenC I hope you continue to improve and feel better!

June started rather sad as we lost my father in law and had the funeral. Those are always hard!

My husband’s appointment on the first revealed his pressures to be too high, right heart cath confirmed our fears and we meet with the team today for the action plan. I admit I am very stressed because once our daughter’s pressure went over 100 she only survived 6 months. Praying they can find a medication that will bring the pressure down! We are supposed to be going to SD to visit friends at the end of the month but I am not sure what will happen with everything going on/it will depend on how my hubby is feeling.

Sending you all love and light!

[jen-cueva]

Hi @kygon, My sincerest condolences for the loss of your father-in-law; the start of the month is not how anyone would hope to begin.

My heart aches to learn about Byran’s elevated pressures. Was his RHC after his father’s passing? I hope and pray for a path forward to lower his pressures. This must be an incredibly challenging time for both of you, and I can only imagine that PTSD is also creeping in.

Please know you can contact me anytime, my sweet friend. I’m sending y’all extra love, light, hugs, and prayers.

[Colleen]

@kygon I am so sorry to hear about the passing of your father-in-law! Then on top of it to hear that your husbands pressures have gone up. Please remember that every PH story is different. I pray that he will start a treatment that does the trick for him and his quality of life improves quickly. I’m keeping you in my thoughts.

[jen-cueva]

Hi @kygon, how are things going for y’all this week? How is Bryan doing on his increased Uptravi?

I bet both of your grandbabies are growing too quickly! When will y’all be back to see the other one who doesn’t live nearby?

I know y’all were planning a Father’s Day gathering. How did that go? Being surrounded by family was the best way to boost your moods after losing your FIL.

Love, hugs, and light are coming your way.

[debbie-moore]

@kygon My condolences for your FIL.  I’ll be praying for those pressures to come down with or without medication and for you to find peace.

[delois-tweedy]

@kygon, I am so sorry for your loss. My prayers go up for your husband, you, and your family. I’m also praying for your husband’s pressures, that they will come down. I also pray for peace for your family.

[delois-tweedy]

Hi @jenc. It sounds like your June calendar is jam-packed. I know how that can wear you down. Hope each appt works out well and you get good reports.

I hope Manny does ok with his cpap. It will definately help, and I use mine faithfully. But I still dislike it! I have tried different masks, very minimal ones and just a nasal mask. Was told to get a small, but they realized I already have a small! Hummm…

Ages of my granddaughters: 17 1/2, 13, 10, and little brother will be 4 in August!

 

[jen-cueva]

Hi @deetweedy, thanks for your positive wishes for my appointments this month. Yes, that can undoubtedly wear us out! I’ll take time in between to rest.

Maybe if you have a small, you need an Xsmall, or possibly try a big kid-sized mask. My face is small, and I often need big kids’ sizes for masks, etc. If they could bring or send you out several different types and sizes, that may help to find one that fits best! Otherwise, they should have an RT sent out to fit you properly.

We have yet to hear from Manny’s provider, and he didn’t want to call and follow up; he will. I’m more aggressive in getting things done.

Wow, are your grandkids out of school for the summer already? You have a variety of ages in the girls and little brother. They must keep you young and busy.

[terese-tuohey]

Hi, folks!  I also have a jam packed June – thankfully, not too many doctors!

Kygon, I’m sorry to hear of your loss this month and of your husband’s worsening heart pressure .  I pray that all witll turn out well, and that you will be able to enjoy your travels.

Tim and I just got back from a 10 day road trip through IL and IN.  I managed my meds and we brought the portable O2 concentrator with us.  It all worked out well.  Praise the Lord for that!

The rest of the month is full of lunch dates with friends  —  5 to be exact!  And a mammogram and the local library book sale, and a special Mass at church for all us married folks on the 17th.    And somewhere in there, I need to get to check in with my pulmonologist.  He’s the only one I haven’t seen this year!

So, blessings to all, and a happy summer!

 

[Colleen]

@tervo I’m smiling at your busy June schedule filled with more happy life events instead of doctor appointments! I trust all will go well with your pulmonologist appointment. Please update us when you can and keep enjoying these summer days!

[jen-cueva]

Hi @tervo, what a wonderful way to spend a jam-packed month! You sound like you always enjoy being out and mingling with friends. I LOVE that positive energy surrounding you.

I wish I were nearby, although 5 lunch dates are pretty busy! We only have a little over 2 weeks left in June! I have a lunch date planned for tomorrow with a friend I haven’t seen in a few weeks, so I’m excited!

That mammogram and library book sale fit in, and you’ll fit in the pulmonary doctor someday.

It sounds like you and Tim enjoyed a nice trip, and all went well, so always a plus! Enjoy the rest of your June adventures, and keep us posted when you stop to breathe. <3

[jen-cueva]

Hey @cdvol3gmail-com, we’ve been missing you in the forums. Have you had a busy June after the trip and your family visits? How are you, Dick, and Cloud managing this month?

Please let us know an update and if we can support you in any way, my dear PHriend.

[carol-volckmann]

Thank you Jen for checking on me. I do have to admit I have felt strung out physically and mentally. Going into next week ending June I have appointments with Pulmonologist, Dermatologist and hope to schedule having a new Hickman line put in as well as a couple other  … like so many of us, it just does not end! (End? Don’t like that as an alternative! ) and on to July.

We will get on with it. We just have to make sure we carve out time for just us!

Sending you good wishes for your appointments coming up and hope you, Manny and Zoe have a toes in the sand weekend! ♥️⛱️😊

[Colleen]

@cdvol3gmail-com I hope you find time to rest your body and mind.

Let us know when the Hickman replacement is scheduled so we can support you through that. In the meantime is your current Hickman functional?

Cullen and I are headed to the Seattle in a few minutes. He sees the lung transplant/pulmonologist doctor today for routine visit. His cough has been lingering so I don’t know if he’ll be able to handle the scheduled PFT he is supposed to do. Anxious for them to listen to his lungs and have a chest xray to make sure this hasn’t changed from a basic cold.

Thinking of you often and wishing you well.

[carol-volckmann]

Good morning Colleen, thank you for checking up on me. About a year ago my Hickman line just came out. The new one they put in is  very short – uncomfortable and now itvlooks like it could come out. Will be talking with Dr Leary, Pulmonologist, tomorrow to find out how soon they can replace it with the longer one.
<p style=”text-align: left;”>You and Cullen are certainly in my thoughts today and wishing Cullen’s appointment goes really well. Positive thoughts that his cough is not something serious.</p>
Hugs to you both, you also are in my thoughts so often. Sending you lots of love ❤️

[jen-cueva]

Hi @cdvol3gmail-com, please tell me you had a relaxing weekend. I picture you waking up reading your news now. Did you happen to read any of your good books over the weekend?

What a busy month you’ve had. Wait, do we find ourselves saying that most months?

Oh yes, we did a short e-bike ride and also had some beach time. You guessed that one!

Thinking of you this week as you go through your appointments. I hope and pray the Hickman placement is scheduled when convenient for you.

Did you stop the antibiotics, or are you still on them? I knew you mentioned it wasn’t helping the SIBO.

Light, love, and hugs coming your way, my sweet PHriend. <3

[carol-volckmann]

Hey sweet friend, hopefully I find out something tomorrow from my Pulmonologist about replacing the Hickman line.

We did have great weather this weekend for gardening work and taking Cloud for some great off leash runs.

Have to admit the weekend zapped my energy but it felt good that we got done what we did.

So good to hear your weekend took in a bike ride! That had to feel good!

I finished the 14 days of antibiotics for SIBO, to no avail. I really do not think this approach is working. Will be talking to my Rheumatologist in July and see where we go from here.

Anxious to know how your appointments go for you this week, so please check in.

Sending you light, love and warm hugs 😊🤗❤️❤️

[jen-cueva]

Hi @cdvol3gmail-com, please let us know what your pulmonary doctor does for your new Hickman placement.

You certainly have had your share of ups and downs this year. I hate that the antibiotics are not helping SIBO. There must be something to offer you relief.

Yes, the weekend was lovely; it was tough not to spend time outdoors. I’m grateful you had some gardening time, and Cloiud enjoyed his runs. It sounds like he ran you both ragged.

Isn’t it frustrating when a few simple joys we do zaps us so much? But yes, we savor those moments, as it feels so good to be productive and do something we enjoy.

I felt like that Sunday. Saturday was our bike and beach time. I didn’t cook on Sunday; Manny grabbed us food from a local deli. He was busy working on something in the garage, and I did a load of laundry and cuddled with Zoe between her walks.

My appointment today is in psychiatry, and tomorrow is with my kidney doctor, so I am nervous about that. My labs from last week weren’t terrific. We are headed to Texas on Friday for a few days to see family and friends for the fourth.

I’m not looking forward to that heat and humidity. I told Manny I only need tank tops, shorts, and swimsuits if I feel up to the pool. But I haven’t seen my parents since March 2022, and my sisters and their families, except for 1 niece, 2 years in October.

[carol-volckmann]

Thank you for asking. My zoom meeting with Dr Leary went well. He is going to push to see how quickly radiology can change out my very short hickman line to the longer one. Evidently no one likes the short line!! The manufacturer is only making the short version-why?

The injectable meds now needs the FDA to approve it to be on the market. Fingers crossed 🤞 it will be soon

How was your appointment with your psychiatrist? I hope we’ll and with some suggestions on how to get a handle on your anxiety and stress.
<p style=”text-align: left;”>I do wish some good news from your kidney doc and your next labs go in the right direction. What were your creatin levels?</p>
<p style=”text-align: left;”>Oh my, Texas with this heat. Heat and our health issues do not play nice!! I hope you can stay cool. Heat just drains all my energy – it must fir you too. Please take very good to youself. As forcyour sisters, they could come to visit you in SD!  I do understand needing to see your parents. But do take care. I know Manny will make sure you are okay!</p>
Let me know I w how it goes tomorrow.

Sending much love and care. 😊❤️❤️

[jen-cueva]

Next week is the end of June- yep-already!

I have a psychiatrist appointment and a nephrologist appointment next week to end the month with a bang before the July 4th holiday!

How about y’all? Does anyone have appointments next week as we close the book on another June? Let us know some we can support you.

[Colleen]

Well @jenc I hope they end with a bang that sounds like fireworks celebrating good appointments and not like a door slamming shut! Seriously, I hope they both go well for you!

Cullen has a lung transplant appointment on Monday. As you know, he has been sick so we are playing it by ear whether he will have a spirometry test done before he sees the doctor. We have informed her that we will be moving to NJ and considering UPenn for his care. She is going to do some research and hopefully have suggestions for us on Monday so we can start planning the stressful transition.

[jen-cueva]

Thanks @colleensteele. Have a safe trip to Seattle. I just said an extra prayer for safe travels and positive test results.

I’m hoping the lingering cold is the cold hanging on and will resolve for Cullen soon. As someone who moved my care across the country, I can relate to your anxiety. With his TX team, I know they will make sure everything goes smoothly.

The logistics alone in moving across the country are challenging. This one will go smoothly, I know.

How are you feeling, Colleen? Is your cough lingering, too?

[Colleen]

@jenc my cough is lingering too but both Cullen and I feel a little bit better today. Still experience coughing fits once in a while but it’s not as consistent.

I know I keep asking but any new updates on your health?

[jen-cueva]

Hi @colleensteele, I hope the lingering cough clears soon. But I’m grateful that you and Cullen are feeling a bit better.

My nephrologist appointment is here shortly. I’m about to get ready to leave for that. I’ll update that tomorrow; it should be OK. My labs were off some last week so she may repeat them.

This morning, I woke up in a pain flare. So, I had to take something and crashed for 2 hours. That will help me make the appointment now. I’m grateful I could fall asleep once the pain wasn’t as horrific. My pain appointment isn’t until the end of July to reevaluate my meds.

Thanks for your support. I wish I had more to update after all my tests and appointments.

[Colleen]

Oh no @jenc it saddens me to hear you dealt with pain this morning. I know it’s bad when you break down and take meds for it. Do glad you did though and I’m glad it helped! Take care of you! I’m worried for you about the heat in Texas. The temps there are crazy right now. I hope you remember tricks to stay cool during your visit!

[jen-cueva]

Hi @colleensteele, thanks for your concerns. I’m not excited about the heat in Texas. But Manny booked us a hotel close to everyone so we could rest in the AC when needed.

You know, Manny will make sure I am taking it slow and not outside too much. Between him and KK, I’ll be good. I won’t lie; I’m a bit anxious about the heat and humidity since I haven’t experienced that in so long. But I am trying to focus on the positives of seeing family and a few friends.

Yesterday my nephrologist adjusted my diuretics because of my decreased kidney function. But we agreed to repeat labs the week after I’m back and rested and decided from there. Our hope is my kidney function will be closer to my baseline then.

I’m praying it is because if not, several other meds need readjusting to account for my kidney function.

Rheumatology believes that my current issue is def gout, not RA. But I also have osteoarthritis. If needed, there’s a new med for CKD patients with gout that’s easier on the kidneys. I am holding off for now.

Therapy session today, then I am off to do errands to prepare to pack. No, I haven’t started!

[Colleen]

@jenc I’m sorry you are going through all that you are with gout and your kidneys but at least your doctors have a plan of action. Fingers crossed the diuretic adjustment works! Hopefully you will feel well enough while in Texas to take your mind off of these concerns and just enjoy your visit!

[jen-cueva]

Thanks, @colleensteele; yes, I hope things look better when I redo my labs after our trip and recharge. I will focus on enjoying myself and taking precautions from the heat.

[carol-volckmann]

Hi Collen, I just read Jen’s reply to you.  Hope you also find answers to your cough – with everything going on, neither one if you can be sick. Saying that, what life has tossed your was this Spring it is no wonder your resistance is low  – from emotional stress and physical. Please be kind to yourself!

I felt a bit of sadness when I read you will be moving to NJ as I have felt we were like good neighbors even though not meeting face to face!

Moving is exhausting again both emotionally as well as physically – and moving across the country will take its toll. Thinking about it it can also give you something to look forward to new beginnings- just please make sure you take care of yourself and get as much help as you can.

I am sorry we never met in person – I’ll miss you not being here ❤️

I totally understand how this move F or you and Cullen makes sense  – to be near family and a bit nostalgic being back where you grew up.

[Colleen]

@cdvol3gmail-com thank you. I’ve been worried about my parents for years now so it just made sense that I return home to take care of them. I once thought I could move back to NJ with no love lost for WA but after 20 years living here that is not the case. I will miss the State and all the wonderful friends I’ve made here, including those like you whom I’ve never met in person.

I’ll still be here for a while. The move will probably happen between August and October.

Wishing you luck with the Hickman line situation. It’s always something isn’t it?

[carol-volckmann]

Certainly understand the need to be near your parents.

U Penn has such a great reputation I hope Cullen’s and your doctors will be able to match you both with teams that you are comfortable and confident of their expertise.

As Jen knows switching teams in another state is not always smooth. Jen’s experience seems to have worked out I pray yours will be too.

Dr Leary pushed after my appointment today and I will have a new Hickman line in on Friday ( the longer one, thank goodness). 😊  Thank you Colleen!

Sending warm hugs with love and light.

 

 

[jen-cueva]

Hi @cdvol3gmail-com, I’m grateful your doctor got your Hickman line replacement in before next week’s holiday. Aww, so they put a shorter one in last time?

I hope all goes well on Friday, as it should. I am sending you extra love, light, hugs, and prayers, my dear PHriend.

[Colleen]

Very good @cdvol3gmail-com! I’m sure all will go well on Friday but I will pray to make sure of it!

[carol-volckmann]

Thank you Colleen and Jen for your support and prayers. I will be so relieved to have this IV line replaced with the longer one!

I am very concerned about you both: Colleen, you and Cullen traveling to WI where right now is smoke filled. I just pray by the 11th the smoke will have cleared out.

And, Jen you traveling to TX where the heat index is over 100. Battling your kidney function and trying to get ahead of your pain … you are in my prayers and I am surrounding you three with positive light filled with love ❤️.

 

[Colleen]

Thank you for your concern @cdvol3gmail-com!

It’s funny/not funny how @jenc and I often find ourselves dealing with similar circumstances at the same time…from food shopping, going to the hair dresser or traveling to another state with concerning weather conditions.

[jen-cueva]

Hi @colleensteele, that’s too funny! But true; I know we have been shopping for food or at the hair salon. Now, we are taking trips to areas with concerning temps and smoke.

See, we are a perfect team, @colleensteele! I love you bunches and appreciate you watching the forums while I am away.

I hope everyone enjoys a safe and relaxing 4th of July weekend.

[jen-cueva]

Hi @cdvol3gmail-com, thinking of you today as you go in to have your Hickman line changed. The longer one sounds like it would be more comfortable, too.

No worries, you know Manny will closely watch me, as well as KK. I just spoke with my Dad, and he will be there tomorrow. He’s also worried about me and the heat. He’s one of the main reasons we are going to see him. He has been declining, and he doesn’t fly. So, as a Daddy’s girl, I need to check on him. Otherwise, I would wait until it was cooler.

But we will be in the AC taking breaks and My nephrologist also reminded me to keep hydrated and weigh myself while there to check for extra fluid. You know we lived there for years. But we both hate to leave our 70s, which may reach 80 this weekend, for that Texas heat!

Thanks for your love and support. May you feel the extra love, hugs, and positive thoughts and prayers today.

[jen-cueva]

Hi @deetweedy, you’re on my mind this morning, and I wanted ti check in on you before I head off for Texas tomorrow. How are you feeling? Any improvements in your breathing?

PLease update us when you can.

[christines]

I’ve been medical appointments, not only for me, but for my mom and husband as well. This is a cyclical thing. After July, I am hoping it slows down a bit. This has been going on for the past 3 months. No matter what, all of the doctors know that I am taking a vacation from all things medical the end of September. My husband and I have a cruise planned to celebrate my 65th birthday and our 44th wedding anniversary.

[jen-cueva]

Hi @christines, it sounds like such a busy season with medical appointments for you, your hubby, and your mom. I can’t imagine. My June seemed pretty busy, and I am ready, like you, for a break, at least a slower month! How are you managing it all? Where do you find that energy?

I don’t blame you; you and your hubby deserve that cruise in September. That’s an exciting adventure to look forward to, have tu been before? How long is it, and where are y’all cruising? What a wonderful celebration for your 65th and 44 years of marriage! Please keep us updated before and after you head out to cruise the ocean.

[Colleen]

@christines my heart goes out to you. As someone who has cared for more than one family member as a time I know how complicated and exhausting it can become. Not to mention making time to take care of your own health.

I’m so excited for you regarding the upcoming cruise! Happy Birthday to you and congratulations to you and your husband on your wedding anniversary! I hope you will update us about your trip when you return!

[debbie-moore]

@christines where are you going on your cruise?  Happy 44th and 65th!