What is on your medical calendar for August?

[jen-cueva]

OK, y’all, we are already off to a busy month. Many will return to class. Who has kids back in school?

What about your medical calendar for August? I know our newest member @dbell1069 has a Cardio appointment later this month.

I have an Echo today, therapy, labs, and a spine PT evaluation tomorrow afternoon. My labs continued to be off, and we had to add my third diuretic back to the mix after a rough week with retaining 8 pounds of fluid.

Now, what about our August birthdays? Who is celebrating their special day this month?

Let us know how we can best support y’all.

[Carol Volckmann]

Jen, I am so sorry to hear your labs are still off!!I hope your labs today showed some improvement and your echo turns out to be good. How did your PT evaluation on your spine go?

All this has not been a good time for you. I know you always look to have a positive attitude – maybe a good time to put your mind in your happy place! Please be kind to yourself and get the rest you need. Sending you hugs filled with light and love ❤️  and extra positive vibes.

August is not very busy for me as most of my team is on vacation. Not feeling great and a bit down. I know it will pass and I can get extra hugs from Dick and lap time with Cloud – he has the softest eyes that has to make you smile and feel the warmth.

Sleep well my friend – warm hugs for you and Manny and a belly rub foe Zoe.

[jen-cueva]

Hi @cdvol3gmail-com, thank you so much for your kind support and encouragement. Yes, I’ll get my labs this afternoon before I go to a PT evaluation that my pain management team suggested for my back and spine. We will see how that goes.

I feel like this last few months have been extremely busy with appointments. But we will get my labs back on track within the next few weeks.

I’m sorry to hear you’re feeling down. But you are so happy you can feel joy from the love and hugs from Dick and just being around Cloud.

I’ll allow myself more grace and rest, as I know I need it. Tomorrow will be a slower day for me. Manny took me to the beach to chill Sunday. You know that is my happy place.

Gentle hugs and prayers coming your way in hopes you start feeling a bit better soon.

[Colleen]

@jenc you are always in my prayers but today I’m specifically praying for good Lab results and helpful PT evaluation.

@cdvol3gmail-com you have filled me with so much warmth these past few months only for me to find out that you are feeling down. I’m so sorry to hear that! Be kind to yourself, take the time you need to feel better and know that you are never alone. You have your sweet Pup, loving husband and good friends here ready to support you in any way we can!

[jen-cueva]

Hey, y’all, just a minor update to share. My labs improved, and we had to get the extra fluid off. My kidneys are not functioning at my usual baseline but are also not the worst. My nephew said she rather I will be more comfortable and have that extra fluid off, even if that means my kidneys are not functioning as well as they were.

The best part is NO labs for her until three weeks! That;’s a huge win after dining with them weekly for the last several months. I told her I would miss our weekly chat like a friend, but thankful it’s less often. She laughed and agreed. 😉

My PT went pretty well. I was given a resistance band and a few home exercises 3 X a week. The goal is to see me once per week, and I may only need a few visits, he said. He credited my light exercises and stretching at home several times per week as a plus and asked why I was not as bad as he thought I would regard my strength.

@cdvol3gmail-com, I hope you woke up feeling much better this Monday morning, my sweet PHriend!You’ve supported and offered thoughtful words to all while struggling last week.

Overall, a positive few reports. I’m incredibly grateful for your ongoing love, prayers, and support as I’ve needed to redo labs so often, and now we are closer and OK with that.

How are y’all doing this new week? Are any new appointments or procedures scheduled that we can offer you support for?

[Carol Volckmann]

Hey @jenc Oh WOW 3 weeks till your next labs!! That is good news. Maybe the numbers are not back to your normal yet, not carring all that extra fluid must feel better!

And your PT evaluation went well! Maybe we need to do our stretching together as I am not very disciplined when it comes to exercises. Hehe 😳

Pain management is so important for chronic pain. Unfortunately many doctors are clueless, or dismissive because you’re a woman or you are addicted 🤯

Fortunately my Rheumatologist is not one of those doctors and I hope your pain management team makes sure your pain is managed well!!

The on going saga of my SIBO where no combo of antibiotics has worked. My Rheumatologist now would like me to take a combo of pretty heavy duty stuff, Vancomcin and Bactrim. The more I read about them the more concern I became. He is in Japan right now so I will wait to go over my concerns. I am so tired of this – nearly 2 years and nothing seems to work.

I hope you and Manny get to the beach again this coming weekend. I agree the Pacific is much colder than the Gulf and colder than the Atlantic but, feet in the sand, a little at water’s edge … feels mighty 🙂 .

Sending you warm hugs, support and lots of love ❤️!

 

[jen-cueva]

Hi @cdvol3gmail-com, I’m so sorry that the newest treatment plan for SIBO hasn’t helped. It has to be frustrating when you can’t get relief from your GI symptoms.

Yes, 3 weeks is a huge plus. I am so excited and can breathe better without that extra fluid.

I have trigger point injections this Friday for my back. My pain management team visit is at the end of the month. I’ll have to start nudging you when I do mine at home, Hehe.

Again, thanks so much for your thoughtful encouragement. I pray you get relief soon, my dear PHriend. <3

[Colleen]

@jenc I’m happy to hear you are getting a break from getting labs. Getting that done multiple times a month can get exhausting, and waiting for the results isn’t fun either.

I’m really upset to hear about the back pain and other discomfort you are experiencing. Praying those injections help you!

[jen-cueva]

Thank you, my FWW and sweet friend, @colleensteele. I am thrilled that I can wait several weeks for labs. It’s been exhausting and frustrating since we could not find the best balance without compromising my kidneys more. But comfort counts, too. Breathing is needed, so I am happy that’s in the past.

Your thoughts and prayers are always greatly appreciated more than you know. I, too, pray the injections help, especially after I go through that pain to get them with no anesthesia.

How are things going at your house this week? Are any new appointments coming up?

[Vanessa Vaile]

PS forgot about the August birthday ask. Mine is August 24th. I’ll be 80.

[jen-cueva]

Wow, Happy Birthday, @vanessavaile! Your birthday is a day before my daughter’s! But she isn’t celebrating such a huge milestone! Congrats to you, and keep moving forward and PHighting, my dear PHriend!

Here’s a special birthday message for you and all celebrating this month:

Happy 80th (or whatever year you celebrate) birthday, my PHriend!You have brought happiness and joy to so many people in your life, and we can only imagine how much you’ll continue to do for many years to come. We hope you have a day that is as wonderful as you are and that you are surrounded by people who love and appreciate you.

Cheers to you making another trip around the sun!

[Carol Volckmann]

Thank you Jen for your loving support always.

How did your PT evaluation go? Were they able to point to a cause to your pain and any recommendations? Talk about enough is enough. So much on your plate. My heart goes out to you and wishing you positive action.

Colleen,  sweet woman. I will take your advice and be kind to myself. Your plate is so full. I know you will get through all if this. I think the light ahead for you is a walk on the Jersey shore, bare foot – allow your grief to open and open your arms to  new beginnings. Sending you warm hugs filled with love ❤️.

 

[jen-cueva]

Thanks, my sweet PHriend, @cdvol3gmail-com. I forgot to mention chronic neck, back, leg, and chest pain. But I’m supposed to get trigger point injections for the back pain this Friday. They called to schedule those this AM. If it doesn’t offer any relief, I’ll not be returning for that again. The chronic pain is most likely due to years of pain and not seeking pain relief because I was too worried about doctors and HCP thinking I was drug-seeking, which happened to me twice in the hospital.

Then I found a fantastic gentle pain management doctor in Houston after needing IV pain management multiple times in the hospital. They are trying different therapies to see what may work best for me. Most likely, it will be a combination of treatments.

Yes, please allow yourself some grace. Cheers to a better week, Carol!

[Carol Volckmann]

What a bummer @jenc  chronic pain is so difficult to control. Unfortunately most doctors are either clueless, think you will become addicted, already addicted or just do not take you seriously. It us so frustrating 😤. Fortunately my Rheumatologist believes me and makes sure my chronic pain is managed. The one drug that works for me and I am not addicted to ( have been on as needed for years) is Hydrocodone  ( Vicodin ). After my subQ was taken out I did not need it for several months and forgot all about it.

I am thrilled that you do not have labs again for 3 weeks!!! I know your numbers are still not there but going in the right direction! 😊

And … your PT evaluation was also good to hear. Maybe we should do our stretching together – I am not very disciplined about doing mine hehe 😜.

The on going saga of SIBO … my Rheumatologist ordered 2 really strong antibiotics, Vancomycin and Bactrim and wanted me to take them for 2 weeks. The more I read about them, the more concerned I became – do not take together, side effects are pretty scary etc. 😳  I want to talk to him about my concerns but he has taken his whole family 25 of them to Japan. I think I should wait to talk to him. I know he wanted me to have stronger antibiotics as none of the other combos worked. I want this to work, but I sure don’t want to put my body in jeopardy.

We are having our first heat wave this week high 80’s but by the end of the week, back into the 70’s 😊 heat really takes a toll just as cold does.

Well, sweet friend I have been rambling on enough. Sending you lots of warm hugs – hope you and Manny can make it to the beach again this weekend.  Lots of love and support!

[jen-cueva]

Hi @cdvol3gmail-com, you’re so very thoughtful despite your struggles. I know we are all dealing with so much at once, but seeing the immense support you and our other members give to others and hopefully receive in the PH News forums is joyful.

I’ve been on a tiny dose of Dilaudid for immense pain. I was also given a muscle relaxer that does not touch my pain. So I’ll get the injections on Friday and F/U with pain management at the end of the month. Of course, if my pain intensifies, I’ll reach out sooner.

Ugh sorry to hear about that rough combo of antibiotics. They come with some horrible side effects. But he wants a stronger combo to see if that helps with your SIBO. It’s also a weigh the pros and cons because you don’t want to add any more side effects.

KK moves into her place this weekend, so we are uncertain whether we will make the beach. But I bet we’ll see if we get in the water. We hope to get her settled in some.

You are never rambling. I’ll chat with you soon, my PHriend. Take care of yourself. Steal all of Mr. Cloud’s love and kisses. Is he entirely recovered now?

Zoe will be getting her spay soon. We have yet to schedule it. But that’s on Manny’s to-do list. Hehe.

I did my PT stretches this morning and even a modified plank for 30 seconds. So, go for it!;)

[Carol Volckmann]

Good afternoon @jenc 😊. I hope the Dilaudid is helping. For me, the pain seems to kick up in the late afternoons into the night. Vicodine takes the edge off for me but it is a terrible drug for Dick! When he had his gallbladder taken out Dilaudid worked really well for him.

Glad you are going to get the injections on Friday especially since you will with KK moving into her own place. Will she be closer to you (I hope)?

Did the PT folks tell you what is causing so much pain in so many areas? I wish you were going to pain management sooner. Back/spine pain is insidious  – no matter what you try and do, what position your in, the pain is there.

When I had back surgery years ago after the surgery he told me one of the best things I could do is get into a warm pool breast high and walk across the pool slowly keeping the water at the same level. It did help help the rehab part.

Mr Cloud turns sweeter every day. He is so happy to be out of that cone and can take his runs. We bought him a softer E-Collar and he really did not try to get it off. He didn’t like it but he put up with it … and didn’t come crashing into you with that hard plastic collars! Cloud wishes Zoe will get through surgery just fine.

Okay, you did your stretches so tomorrow morning I’ll do some too! 🤪

I am still not sure about the combo of antibiotics. When I looked them up both the Mayo and Cleveland Clinics said not to take these together. So, I shall wait and talk with Dr Furst when he returns from Japan.

Please take very good care of yourself this weekend. I know you will want to do too much!!

Sending loving ❤️ hugs and lots of positive thoughts 🤗❤️🛀

[jen-cueva]

Hi @cdvol3gmail-com, thanks for the love and support. Dilaudid does help, but I wouldn’t say I like to take it often. I can’t do much once I take one, so I try to hold off.

Interestingly, my pain is constant, but the worst is in the evenings and at night. PT again this afternoon. I know I have some osteoarthritis and going without pain control for years. Also, I have been told by my first pain doctor that my chronic pain is related to going long periods with low O2 through the years. So, it seems like a combination of issues, symptoms, and side effects.

Those two antibiotics sound like torture, but once you and your Rheumy consult, you’ll have a better idea and plan. He had a backup plan, too, right?

Poor Cloud; I am so happy he is back to his runs. No one is comfortable, but the soft one has to feel much lighter. I can picture him running into you and Dick with that collar. Hehe. Thanks for the support with Zoe.

You know me well. After those injections Friday, I hope to return to SuperMom, except Manny and KK won’t allow me to do it all! Eeek!

Thanks for the love and support, my friend. Have a terrific Thursday!

[Carol Volckmann]

Please @jenc listen to Manny and KK this weekend!🙄

With so many symptoms, side effects affecting your whole body, I pray your team of pain management, PT will help. Evenings I know are worse but as you know as a nurse you do not want the pain to get ahead of you – taking the meds too late are not as effective.

Good luck on your injections tomorrow giving you enough relief that you won’t need dilaudid as much.

Sending warm loving hugs 🤗❤️❤️

[jen-cueva]

Hi @cdvol3gmail-com, I will listen to Manny and KK this weekend. They moved a few things last night while I stayed home and rested.

Earlier yesterday, KK wanted me to look at Homegoods for a few new things for her place. So, we grabbed Starbucks and off went. Then I made it back just in time to head to PT. He took it easier on me since I already had so much pain, and I had already completed my third time for his exercise this week. He suggested taking it easy until Monday.

Of course, if this crazy hurricane, yes, a hurricane, comes our way, I’ll be on the couch with my heated blanket. (and I thought I was out of hurricane risks here) I love heat to help with pain, so your heated pool exercises are probably similar.

[DeLois Tweedy]

<p style=”text-align: left;”>@jenc, I am sorry that you are having so many issues to deal with. I pray the labs are ok and PT helps with your pain. There’s nothing like chronic back pain unless you have experienced it. I’m glad you live close to the beach and get to go often. The beach is my favorite place as well, but I seldom get to go. I love the smell of the ocean and I could sit for hours letting the waves (visual and sound) mesmerize me, letting the stress go and forgetting, for a while at least, about all my health issues.</p>
Colleen, I pray for you often, and think you must be a strong woman to go through what you have been going through and still remain the PH friend you are to others on this site. I wish for you peace and the ability to let go and think of yourself, to do whatever it is that you need to do to reach peace and contentment and joy again.

On a lighter note, Jen it’s not my birthday month, but my grandson was 4 on Aug 10. His party was last Sunday and it was wonderful receiving his hugs, smiles, and thank you’s for gifts. He’s such a joy! Especially for me just coming out of a down, discouraging time in my life.

[jen-cueva]

Thank you so much for your encouraging words, @deetweedy. I posted an update on my labs and PT level in this post a little more ahead of yours.

Happy 4th Birthday to your adorable grandson! He must be full of hugs, love, and laughter. That has to be a mood lifter for you after such a long time of darker days, my PHriend. Thanks for sharing. I hope you continue to see that little ball of energy and joy!

How are you doing now overall? Tired after the busy birthday weekend, I bet! Have the other grandkids started back to school yet?

[Vanessa Vaile]

So far my medical calendar is empty for August. I hope it stays that way. August is too hot for walking to the Yuma District Hospital. National Jewish Health appointments won’t be until October.

At the start of the month, my NJH lung doc approved down-titrating Uptravi from 1600 2x/day to 14oo 2x/day. I can feel the difference already — no joint and muscle pain reactions to speak.. I’m in the 4th week of the Pulmonary Wellness online pulmonary rehab aka Bootcamp and am relieved not have medication side effects on top of increased exertion.

[Colleen]

@vanessavaile it’s nice to hear an update from you. YAY to an empty August and titrating down on Uptravi! My son often dealt with joint and muscle pain from Flolan and other PH meds he was on. Those side effects can get really bad so I’m happy to hear you are starting to feel some relief!

[Vanessa Vaile]

Probably too soon to tell for sure, but the single step down is making a huge difference and may be enough — and possibly where I should have stopped initial titration. Did Cullen find that hot weather exacerbated side effects?

I just wish my care team would show as much interest in the chronic clotting as the down titrating.

[Colleen]

@vanessavaile yes, Cullen’s side effects worsened in hot weather, especially migraines, flushing and fatigue.

FYI- all extreme temps had this effect on him. When the weather turned very cold or freezing he would have a time of it. We would especially see him struggle more with breathing.

So are they not addressing the clotting at all? I would think in the least they would be monitoring that closely? Keep expressing your concern about it!

I’m sorry Vanessa. It’s been a tough year for you but hopefully you are headed towards better days.

[jen-cueva]

Wow, what a restful month you have this August, @vanessavaile. I’m grateful you are doing Dr. Noah’s Pulmonary Wellness Program again, which is helping you little by little.

Also, thank you for your self-advocacy and for mentioning you want to try to titrate your Uptravi. It’s Advocacy August, and you certainly have done your share and then some advocacy through the years.

I hope the titration continues to improve for you and you won’t skip any doses. Baby steps, you got this, Vanessa!

[DeLois Tweedy]

@jenc, I dare not complain about my overall wellbeing right now. After the rough time I had from mid-June through mid-July, I’m doing pretty well (physically, mentally and emotionally). Since then I have been able to do more in and around the house (with rest breaks, of course). My complaint at this time is my BP is starting to drop again more frequently, usual 80’s over 30’s. Needless to say, this wipes me out for the rest of the day.

I finally got my appt for the sleep study at the hosp to see if I need supplemental O2 at night. The order/referral was sent to them June 22. It is sch for tomorrow night (the 15th)! Then I have a f/u appt with my pulmonologist approx 2 weeks later.

My grandchildren are homeschooled, and have started back after a month’s break. My oldest granddaughter got a job at a pet day care/spa/resort, and loves it! She works with dogs.

I’m so glad your labs were OK, and you seem to be working with the PT program. After being a therapist for 20 years (OT), I know how much therapy can help, especially when a program is developed that addresses your needs. I hope PT works for you and you continue to increase your flexibility and strength.

[jen-cueva]

Hey there, @deetweedy; I’m so grateful that you’ve found yourself in a much better place with your health. But I’m concerned about your low BP. Aren’t you also taking heart and BP medications?

Does your healthcare team know about the low BP of 80/30? I wonder if your sleep study will track that, too, so they are aware and can make necessary med adjustments. How was the sleep study? Did you sleep? Was it challenging to rest with all those wires?

I didn’t remember that your grandkids were homeschooled. That’s a challenge for your daughter. But I bet they learn so much, too.

Hopefully, the PT sessions will help me learn a few more exercises that I can do safely as I try to gain strength. The guy was so lovely. I’ll see him again tomorrow afternoon. I’ve been doing my homework, too. So hope to get a gold star! Hehe

[Terese Tuohey]

Jen and Colleen, I have been following your threads and saying prayers for you both.  I’m so pleased to read that you, Jen, don’ t need lab work for 3 weeks, and that you, Colleen, are starting to find yourself again after all you have been through.  Bravo! to both of you strong women.

I’ll give you a happy report:  My husband and I held a party this past weekend to celebrate everything all at once!  It was my 75th BD (last Jan), his 70th (Aug 11th) and our  15th wedding anniversary ( this coming October 4)  so we piled them all together, rented a hall, got a caterer, and invited a whole bunch of friends and relatives to join us!  It was great fun (yes, tiring, and I’m still recovering), but it was worth it!  we had perfect weather, and family came in from out of town, and neighbors from down the street, and friends we both knew.  They all shared this day with us!

I don’t have any med appts this month to speak of: a follow up with my allergist, and an appt with my primary, and nothing else for the rest of the month.  Be well, everybody who reads these posts, and be strong, and be blessed!

[jen-cueva]

Hi @tervo, Oh my PHriend, I LOVE your style! Party to celebrate all the huge milestones you and your loving hubby have reached! That sounds like such a fun party. I would want to dance with my O2 all night. It’s always tricky for me to sit still in a chair when I hear some good dancing music.

Did you get some dancing in at all? I bet you are exhausted, but oh so worth it, right? Did you and your hubby plan it all? I would have enjoyed your party, I’m sure.

Thank you for your loving words and prayers for me and Colleen. You’re too kind. We appreciate you more than you know.

I hope your two appointments go well and you keep resting and celebrating all month. I think I’ll start calling you our party gal! 😉

[Colleen]

@tervo I was smiling from ear to ear reading about your party! Such a great idea combing celebrations and a mix of family, neighbors and friends. I hope someone took lots of pictures! This is an excellent example of it being worth it to save your energy for something big with plans to rest as long as you need to afterward. You are resting now, right? So happy for you!

[Terese Tuohey]

Hey, folks!  No dancing at the party, just good conversation and good food and company.  Yes, I’ve been pretty wiped out, but so worth it!  I’m starting to feel more like myself today.

The hall we rented came with a patio with umbrella tables, so our guests had a choice of indoors with AC or outdoors with shade and a perfect day.  My husband and I were kept busy between both places so we could greet everyone.  My cousin took pictures for me, but I think the best ones will be my memory pics of folks enjoying themselves.

Jen and Colleen, I’m glad you are taking care of yourselves.  Bravo to you, Colleen, for making those camp plans.  There are times when ‘away’ is the only thing that helps you find your way out of all that you have been through.  And Jen, find a beach and hang 10 at the water’s edge.

And DeLoris, I am still waiting for an overnight oximeter test to see if I need to change my O2 settings for sleep.  The script was sent in on June 28, and I’m still waiting to hear – and that’s after 2 calls to the company!  So I do understand.  But I will tell you, that once I started the O2 for overnights, I have slept better, so this is just an adjustment.  But go figure on supply companies!

[jen-cueva]

Aww, @tervo, I love that your favorite memories will be of others enjoying themselves at your party. This speaks volumes about the caring soul you are!

It sounds like a wonderful time and memory you and your husband, friends, and loved ones will always have. I’m so grateful you have that memory to carry with you. The idea to combine the celebrations into one big party was genius!

Thanks for your encouragement. You may find me hanging near the beach this weekend, watching the surgery chasing the waves from the storm.

That’s so frustrating that the DME company is not responsive at all. Manny has a new CPAP, and they set him up with the same company. He’s waiting to see if the settings need to be adjusted. Hopefully, you, Dee, and Manny receive a call and some answers soon.

Take care and enjoy a restful weekend, my dear PHriend.

[Fran Boston Reichel]

Hello all,

I’ve only been diagnosed for 1 month and have been on Tadalafil. Tomorrow I have an Oxygen Qualifying Test because my SOB has gotten worse since my walk test in April. I have a gastroscope scheduled next week.  I hope they can’t think of anything else to squeeze in.

[jen-cueva]

Hi @franboston, good luck with your oximetry test today! Please let us know how that goes for you.

Next week, on the 23rd, I have an endoscope(upper) and colonoscopy, so maybe we will both feel lighter next week. I hope all goes well. Are you having gastro symptoms, or is this preventative? Let us know how we can best support you with these appointments.

[Fran Boston Reichel]

Jen,

I have IBSD, GERD, and Hiatal Hernia. This is a follow-study with a new GI to see why I get symptoms of lack of appetite and food bolus/nausea. Tadalafil has not improved my reflux either.    I desaturated down to 89% with my HR in the 130s. Since 88% is the O2 cut off not sure what will be recommended by my PH team.

[jen-cueva]

Hi @franboston, wow, your plate is overflowing, my PHriend. It must be challenging to manage all of these GI symptoms and complications. Yes, I bet the tadalafil is causing an increase in these symptoms.

What was the lowest oxygen level you saw overnight or only at rest? How low did your oxygen desaturate down to (89%?) when exerting, like walking? And how was the oxygen test conducted?

Sending you extra positive thoughts and prayers as you undergo your endoscopy this week. I hope the results go well and provide some answers and relief.

Get through that to celebrate your special birthday dinner on the 24th!

Happy birthday, week to you, Fran! We hope you find the relief you need soon. Please keep us posted! 🙂

[Fran Boston Reichel]

Hi Jen,

I’m waiting to hear from my PH doc regarding the results of my test. I have desatted as low as 83% in the past. The test was conducted like a 6MWT.

Good luck with your double scopes.

Fran

[jen-cueva]

Hi @franboston, thank you for sharing more details about your O2 testing. The 6MW test is standard; many PH teams want this done each visit. If not, usually, at least every six months.

I now wonder about your O2 levels at night. Have they ever done an overnight oximetry test on you? This can be done at home and is relatively simple. After I was desaturated with walking quickly, my team ordered the overnight test to see how low I dropped when sleeping. I began O2 shortly after I had that test. You may want to ask this when you speak with your PH team about the Oxygen again.

Thanks for your thoughts with my scopes. We both will be done with these scopes before we know it. You got this, Fran.

[Colleen]

@jenc keeping you in my thoughts and prayers as always but maybe a little more today. Best of luck with your injections! Please take heart to what Manny and KK advise this weekend. They love you so much and want you to take care of yourself. Enjoy the weekend but in moderation.

[jen-cueva]

Hi @colleensteele, thanks so much for your support and love. I hope you have all the fun and laugh so hard you snort as you enjoy your girl’s trip this weekend, my friend. I’m thrilled for you and can’t wait to hear about it.

[jen-cueva]

Thanks for your support and encouraging words for my injections for pain. I had six injections, and the first two days were not so good. But today, I’ve noticed some improvement in my pain. Let’s hope that continues.

PT again this week with homework in between for a goal of 3 times per week.

Endoscopy and colonoscopy Wednesday, so I’m on a clear liquid diet tomorrow. Nope, I’m not l looking forward to that, especially on a Taco Tuesday! Hehe

Here’s to another week. Find something that makes you smile this week. What appointments do y’all have this week? Let us know how we can best support you.

[Carol Volckmann]

@jenc hey Jen, how are you doing? You certainly have had your fill – injections not working very well on your pain, endoscopy, colonoscopy coming up 🤯 moving KK into her home in the face of a hurricane  – YIKES! Enough 😟! Oh, and to top it off no taco Tuesday 😬😒.

My heart goes out to you that with all of that going on there will be some good news – good PT, injections kick in to help the pain and they give you nice warm blankets and the “I don’t  care meds” and all come out A Okay! Seriously Jen, I am sending you lots of positive thoughts, energy to get through all this and warm hugs filled with Love ❤️.  Please go easy on yourself this week.

[Colleen]

@jenc this has been a rough month for you in many ways, but here you are…still smiling and looking out for everyone.

I was hoping the injections would have a faster effect but at least you are feeling a little difference. Praying you continue feeling less pain every day!

That liquid diet for the Scopies is no fun! I sympathize with you! I’m sure the procedures will go well and praying for good results!

How are things going with KK?

[jen-cueva]

Hi @colleensteele, it has been a busy several months. But I’m grateful to move past some struggles. Hopefully, things will slow down shortly after this double scope this morning. I appreciate your thoughtful words and support.

I’m up drinking my last bit of prep this morning. Yep, it’s not fun and draining. Plus I worry about the extra fluid I am taking in on my clear liquid diet and water with the prep solution. I have been getting it down much better than in the past. A friend suggested I add some apple juice to balance out some of the saltiness. I did that, and sipping it through a straw ice cold helps.

KK is doing well, thanks for asking. She is in her place now, but I talk with her at least once daily. Usually see her every few days. Friday, she is going to skydive for her birthday. She won’t let me go but will bring me a video and pics. She started her jujitsu training here and has met a few new friends and some she had met in the past at competitions and when she was here. Next week she begins a social beach volleyball team. She is trying to keep busy.

Yesterday, she called and asked if she should stop by so we can do a keg stand with my prep to make it fun! I told her she could stop by, but I am not trying a keg stand with this stuff; she could try it. Of course, she didn’t sound too excited then. Hehe.

How are you and the boys doing this week? Keep you three in my thoughts and prayers, my dear friend and FWW.

[Colleen]

@jenc I hadn’t thought about the extra fluid being a concern. I assume your PH and kidney docs knew you were having this procedure?

Apple juice! Made a mental note for the next time I have to do this!

How did KK like the skydiving? Was it her first time? Kudos to her! You couldn’t pay me enough to do it!

I hope you have a good weekend. Please reach out to me if you need anything!

[jen-cueva]

Hi @colleensteele, My nephrologist was aware that I was having these procedures. But we didn’t discuss the extra fluids. That’s when I messaged her, but she said to wait a few weeks for labs because they would probably be out of whack. She is aware and on the same page.

Yeah, the apple juice helped it not taste so salty. But it needs to be a pulp-free juice, which isn’t as tough to find when using apple juice. Manny had already bought me the apple juices in those little glass bottles I always like.

KK loved the skydive. It was crazy to see the video. It’s probably best that I wasn’t there to see it all in real life. Hehe.

She “jumped” into her new life. I guess that was her birthday theme this year. It’s been a challenging year for her, too.

[jen-cueva]

Hi @cdvol3gmail-com, you are too kind, my PHriend. I appreciate your thoughtful encouragement and laughs.

Thankfully, the storms were nothing like they thought they would be. The sun is shining already this morning! This helps boost my mood anytime the sun is out!

Tomorrow Manny took off work to take me to have my procedure. Of course, KK wants to be there, too. Although, I told her I would not need a cheer team. I reminded her there was no fam dinner on Tuesday night unless they cooked for themselves. Hehe.

She said I should be ready to eat on her birthday, which is Friday. I was like, “I’ll be ready on my way home after my eating procedure. I don’t eat much,, but that’s too long without real food.”. We all had a good laugh about this last night.

You see, I am allowing myself a bit of grace and laughs this week. Next week, Taco Tuesday, watch out! Maybe y’all should have Mexican food for me today. That way, I feel like I had it, too.

What’s on your agenda this week, my PHriend? Did y’all have a bit of rain over the weekend, too?

[Carol Volckmann]

Okay @jenc prep is almost over – that is the worst 😑 😫 part of these procedures! Good luck my sweet friend – let the test results be all in the good 👍 😊.

On your way home you could stop and have some ice cream 🍦 or maybe a milkshake 😋 and Friday can be an early Taco 🌮 night 😋😋!

I hope your Dilaudid is starting to work for you!! You have enough on your plate and still be in such pain all the time.

I had labs today many were way too low including iron again. My PCP wants me have iron infusions – my Pulmonologist wanted me to have them 2 years ago and I have just been putting them off 😖

You will be in my thoughts tomorrow and I will be sending you warm hugs and love ❤️

[jen-cueva]

Hi @cdvol3gmail-com, I hate to hear about your labs being too low, especially your iron. I did recall that you mentioned it before. You should try the infusions and see if it helps. I’ve had them several times, with a series of 3 or 4. It helped to boost my blood count but not so much with energy. Others have also mentioned iron infusions with PH. I’ll look and see if I can locate that topic again.

Which other labs were too low? Electrolytes? I can imagine with your GI issues, many tend to be lower than your baseline.

I’m up sipping down that last bit of prep this morning. Thanks for talking about milkshakes and ice cream; now, I’ll pretend that is what I’m drinking, a nice creamy mint chip milkshake. Yummy!

Thank you for your encouraging words and positive thoughts always. You are so kind no matter what you have on your plate, my PHriend. Hugs, love, and prayers are with you. Please keep us posted on your labs and iron infusions.

[Colleen]

Thinking of you @jenc. Hope your procedure is going well and that you can relax and enjoy your evening. No forums…just take care of you my friend!

[jen-cueva]

Hi @colleensteele, thanks for your thoughtful words and support. My procedures went ok but longer than anticipated. But they removed several polyps and were sent for biopsy; otherwise, I’m good for ten years. Too bad all appointments don’t end with that.

But I crashed most of the evening and then went to bed. Thanks for holding down the fort and ensuring all members were cared for while I was away. It means so much.

[Colleen]

@jenc your KK is strong like her mamma! I love the “jump into her new life” theme! I would love to make that my theme in October but no way I’m jumping into the sky! Maybe the the Atlantic ocean but it will be cold by then. LOL!

We need to catch up soon. It sounds like KK has been through a lot but haven’t had a chance yet to hear what has been going on. Whatever it is it sounds like she is pushing through it and will probably come out the other side even happier and stronger than before!

[jen-cueva]

Hi @colleensteele, thanks for your thoughtful words. You’re so kind and I’m fortunate to not only have you as my FWW but also a close friend.

LOL, I wouldn’t jump out of a plane either. But she is my little adventurer! Yeah, maybe jump in the ocean in October to restart. Maybe your theme can be, “jumping over the waves of life“.

Yeah, we definitely need to catch up soon. Hopefully, later this week, if you’re available. I appreciate your love and support for not only me but for KK, too. <3

[Colleen]

@jenc hmmm, “Jumping Over the Waves of Life,” sounds like a good column title!

[Carol Volckmann]

Hi @jenc and @colleensteele I like “jumping over the waves of life” – would make a great column title. As patients and caregivers, we may not be able to surf the waves of life but we all can jump over them.

Thinking of you both and hope this week is a better week than last and health, physical and emotional issues are smoothing out. Sending each of you hugs and love.

Aside from your own issues, you both are always right there for anyone needing help or affirmation and always with such empathy and care. Thank you!

 

[jen-cueva]

Hi @cdvol3gmail-com, you’re so right! Your comment reminds me of one of my long-term PHriends, and I say we are “riding the waves” when referring to PH and new treatments, site changes, etc.

I love this title more and more as I read the comments. Everyone knows I LOVE the beach; it’s my happy place. Watching others surf, the waves look so graceful until a massive wave sucks them in, and they are tumbled to the bottom of the ocean.

I thought of this title for Colleen since she will be close to the beach in NJ and is resetting her new life.

This week has been much more relaxed for me, thank you. I hope the same is true for you, my dear PHriend. You all give us so much, and we are PHighting our journeys. Together, we get through our most challenging days. I am incredibly humbled to be part of this fantastic empathetic PHamily!

Thank you for your thoughtful words. It means much more than you know. I need to check in on you sometime. Do you and Dick, and Cloud have any plans for the Labor Day weekend?

Hugs and love to you, my sweet friend. <3

[Carol Volckmann]

Hey @jenc Like you and Colleen, the ocean is in my blood. I love it all, the calm, the stormy seas, the sounds and sights bring such calm to me always has.

So happy to hear your week has been more relaxing!! Boy, you have needed that! How were your test results from last week – have you received any feedback yet? I hope all good news!!

I am going ahead with the iron infusions. PCP doc said he didn’t think they would help much because of my age and medical complications! Bull …… I told him to go ahead and oder the infusions as both my Pulmonologist and Cardiologist felt there was certainly a need as my levels and saturation were way to low.

The next time I see him I am going to tell him I am not giving in or giving up and I need him to be there for him instead of planning my funeral!

No real plans for the weekend just hanging out together, Dick, Cloud and myself enjoying a relaxing weekend.

What are your plans with Many, KK and Zoe? Hope toes in the sand with your new drink in hand hehe … let someone else drive!!! Love and hugs coming your way.

[Colleen]

@cdvol3gmail-com that’s right! Hit that doc with your verbal right hook and remind him of what a fighter you are!

@jenc I have also been wondering if there are any medical updates on your end. What are you lab results saying and how have you been feeling this week?

I want to share something…for the first time since his passing I dreamt about Brian last night and guess where we were in the dream…at the shore! There was a lot to the dream and I woke feeling that the main message was that me and the boys will be ok and that he is watching over us.

[jen-cueva]

Hi @colleensteele, I haven’t yet heard from pathology my biopsies. I plan to call them on Tuesday morning if I don’t see it posted in my MyChart. My thoughts are no news is good news, right?

I’ve been less busy this week with appointments, which is nice! My psychiatrist adjusted my Cymbalta, and it’s taking my body time to adjust. Hopefully, by next week, it will adapt. If not, we are decreasing it back down.

My appetite has been poor; nothing tastes good. My stomach has been upset, so I do not want to add to that. Plus, the extra fatigue, drowsiness, and increased sweating concern me. But I was told by the NP and doctor to give it another week. Otherwise, it’s all good; thanks so much.

Wow! Brian wants you to know everything will be fine on the shore. He’s always watching over you and the boys. When times get tough, I often dream about my late stepfather and Pawpaw, and it feels like they’re telling me I can handle it, too!

I know everything on your plate has been hectic for you lately. But you’ve got this, Colleen. I believe in you, and so does Brian! Once you settle down, remember to prioritize self-care. Take care, my dear friend. I love you bunches and am always here to help in any way I can.

Thanks for sharing such a personal story. I got chills reading your dream about Brian. I bet you dream of him more often as you begin your new journey.

[Carol Volckmann]

Hey @jenc I am so sorry you are feeling still pretty lousy – not fair. My heart goes out to you and hope by resting and going easy this weekend you will have more energy and have something to eat that really is yummy 😋.  Loving support snd healing energy coming right to you so look out, here it comes! Hehe

@colleensteele, I was blown away by your dream. What a warm feeling snd affirmation knowing he IS right there for you and the boys. He knows the Altantic is where you need to be and he will always be there for you. Loving hugs to you. And … thank you for your support and encouragement, I feel your presence ❤️.

[jen-cueva]

Hi @cdvol3gmail-com, today is a bit better; thank you for your love and encouragement, my PHriend. How did you enjoy your relaxing Labor Day weekend with your guys?

We had a quieter weekend. But yesterday we went to the beach for a few hours. Manny grilled when we came home.

I rested most of Friday evening and Saturday while Manny and KK had Dad and Daughter time, which they needed and enjoyed.

Yes, I echo your thoughts to @colleensteele. It gave me chills and tears reading about her dream about Brian.

Let’s start this shortened week with cheer and positive vibes, my sweet PHriend. <3

[Carol Volckmann]

Hi @jenc a “bit better” is better 😉 so glad to hear that dear sweet friend. You have been having a tough time.

It is wonderful that KK and her Dad had quality time together – those times are very special.

We also had a quiet labor day weekend. Dick did finish building a work bench with 9 drawers and 4 shelves over. Really looks great.

I did a bit of house work, paid bills and washed all of Cloud’s beds, blankets, and toys. I’ll send you a photo. He is off leash having a ball running every where.

Short week keeping everything positive and keeping it simple and restful! You too!

Thank you for always supporting with care and with love ❤️! You are one very special person!

 

[jen-cueva]

Hi @cdvol3gmail-com, Wow, you must stand your ground with your PCP! Excellent job at advocating for yourself! Does he know who you are? He needs a swift reminder or a kick in the butt! Hehe

When are you scheduled for the iron infusions? Or are you awaiting insurance approval now?

Still no test results back, but if I don’t see anything in my MyChart, I’ll call pathology on Tuesday morning. Yes, I’m enjoying some less busy days this week. Thanks so much for your loving support.

I have no big plans yet, but the beach, sunshine, and relaxation are on my list. I hope to get my Fall wreath and decor out by my front door by Tuesday.

Yes, time with our loved ones and relaxation is more my style, too. My neighbors did mention grilling together, maybe on Monday, and having a drink. So, we shall see what my drink choice will be.

Cheers and I hope you, Dick, and Cloud enjoy the relaxing Labor Day weekend without laboring! Hugs and love are coming back your way, my dear PHriend.

[jen-cueva]

Hi @colleensteele, yes, you can use that title when you are ready to write your next column. That may be a little longer, and that’s OK. Take time to process your emotions, my dear friend and FWW.

I am headed to SBUX again later to get another drink. Darn, you and Cullen gave me a new drink to try, and it’s much different from my usual picks.

For any other SBUX drinkers who enjoy trying new things, Colleen shared with me the pink drink with chocolate cold foam. It tatses like a chocolate-covered strawberry. When I asked for it, my local Barista told me it was one of her faves. She suggested, which I did, to make it in a Venti cup; they will add extra ice. That’s only if the Braista is once enough and doesn’t charge extra. Otherwise, she explained, which makes sense, when cold foam is added, you barely get any ice.

Maybe you and Cullen can try it like this @colleensteele, and LMK what you think. I may try it as you suggested today when I pick up my meds. It will be in the Grande size.

[jen-cueva]

I’m posting an update here from @jimi. Jimi shared in an update, so I wanted to ensure everyone could see his comment and add their thoughts.

Unfortunately, he was turned down for his kidney transplant due to his age. He says, “Turned down for kidney transplant Piedmont hospital will not accept people over 70, it messes up
Their funding. The bad part was that I worked hard for 6 months to strengthen my body, endured numerous tests, and it took less than an hour to reject me. I was70 when I applied, 72 when I went to on site evaluation. Anyone that could read and comprehend would have know that I was over 70. It is stuff like
This that leaves a bitter taste in your mouth. I am still holding on, checking other transplant centers, hoping to be accepted.

When I came down with PAH, I was given 6 months to live and I became a “genie pig”, using experimental drugs , tests and whatever would prolong my life. Met this group
of wonderful people, who encouraged me to fight and just knowing others that had beat the “grim-reaper”, made it easy
To fight my best fight. Been down many times, always got back up and tried to encourage others to stay in the game. Thanks to all of you for looking after me

I’m so sorry, Jimi, that you’ve been denied at Piedmont for your kidney transplant. I agree that other centers have different requirements, and I will keep you in my thoughts and prayers that you find another transplant center that works for you soon.

You know, I was told early on that I would be denied a kidney transplant because I would also need a double lung or lung and heart transplant to improve my chances of survival. This was not what I wanted to hear, and it was when I was about 43. That was told to me by two different transplant centers.

Thankfully, my kidneys are hanging in there and doing what I need them to do most of the time. But I can only imagine your frustration, Jimi. Don’t let this stop your PHight! You can do this, and as you share, you’ve already fought so hard to get where you are today!

Does anyone have any information on kidney transplant requirements in your area? Have you experienced chronic kidney disease(CKD) with PH, and has it been a discussion with your care team?

Thinking of you, dear PHriend, and sending you positive thoughts and prayers.

[Carol Volckmann]

@jimi I am so sorry and angry that you have been turned down for a kidney transplant from Piedmont because your age would screw up their funding! I pray for you and urge you looking into other centers. You are in my thoughts and I am sending you positive thoughts for finding the right center to help you.

I am 79 with PAH and Scleroderma  and keep being told by my new PCP doc “well, at your age and your very complicated medical conditions this is what is expected…” The next time I see him I am going to tell him, I am not planning my funeral yet and would  like him to fight with me in finding ways that will make some of my medical issues better – not to give up!!! When I was diagnosed 17/18 years ago I was given 3-5 years to live.

Hang in there @jimi – you will find a way. My heart goes out to you.

Thank you @jenc for updating us on @jimi.

[Colleen]

@jimi my heart just sank and I am feeling emotional about this update. I feel like they dangled a carrot in front of you and just when you were within reach they yanked it away.

Please, please don’t give up! To make sure my understanding is correct I did a little research and indeed…Older adults are not prohibited from getting a kidney transplant. Many of the nation’s transplant centers don’t even have an upper age limit for kidney transplant recipients. It is likely they will try to match you with a donor close to your age.

It angers me that organ donation centers encourage people of all ages to register as donors…so, your hospital will happily take organs of any age but just don’t expect them to offer them to the same generation. Ridiculous and cruel!

Focus on finding a center that will accept you and the hard work you have put into being well enough for a transplant. But once you find them, I would look into filing a complaint against your current hospital or to whoever will listen.

I’m so sorry and will keep you in my prayers. Let me know if I can help you in some way.

[Terese Tuohey]

Dear Colleen,

What a blessing you had when you dreamed of Brian!  He did indeed come to tell you all is OK.  I know that feeling.  When you wake up, you just know that he is with you, watching you and the boys.  May you have many happy memories, and when the time is right, Brian will let you know he is around.  I’m so happy for you!