Hello November: What’s On Your Calendar This Month?

[brenda-denzler]

Good juju being sent your way, Jen.

[jen-cueva]

Thank you so much for the “good juju” coming my way this month. Do you have anything coming up soon?

Hi @colleensteele, I hope you scheduled Cullen’s labs, and those that come back with good results. I appreciate your prayers and support, always. How about you? Did you get your flu shot yet?

[brenda-denzler]

Jen, I get fitted for a CPAP on the 15th/16th. I’m not thrilled about this, but it’s probably necessary.

[jen-cueva]

Hi @brendad53, I will send you extra positve thoughts and light that the CPAP helps you with some symptom relief. No, it’s not the most comfortable. But I heard they do offer a variety of styles now. Hopefully you’ll return with the newest styles that works best for you.

[Colleen]

@jenc I pray for you every day but extra ones will be said on the 18th!

This post has reminded me that Cullen is behind on his labs! Must call and schedule those for something this week or next! But that’s it for us this month.

[jen-cueva]

Thinking of our sweet PHriend, @cdvol3gmail-com; she sees her surgeon today. I’m sending you hugs, love, light, and prayers for positive news. Please keep us posted on how things go.

I bet you, Dick, and Cloud will have a relaxing weekend.

[Carol Volckmann]

Thank you Jen for all your good thoughts. Must have worked! We were both very comfortable with the surgeon. Surgery scheduled for Monday and all will be okay – a whole lot less scary than we thought!

You, my friend are in my thoughts especially for the 18th!! Hopefully your neurologist will have some positive answers and thoughts moving forward. This has been hanging over you so long.

Sending light, joy, hugs and love!

[Colleen]

Thank you for the update @cdvol3gmail-com. I’m glad to hear things went well today which will hopefully help you mentally get through the weekend a little easier. My thoughts and prayers will be with you on Monday!

[Carol Volckmann]

Thank you Colleen for reaching out with your prayers and thoughts. I am all set for tomorrow except for taking hot showers prior to surgery because of the storm – we still don’t have power. So, sponge bath is the way to go. Thanks again for your kind thoughts!

[Colleen]

Oh no @cdvol3gmail-com I didn’t realize you were without power. Not the best circumstances to prepare in for surgery.

You have been on my mind and in my prayers today. I will look forward to an update when you feel up to it but rest and recovery is most important. Take care of you!

[Carol Volckmann]

Hi Colleen, the power came on Sunday night so I was able to shower before surgery. Surgery went really well and now home and resting up as you say. Thank you for all your warm thoughts and prayers  – I treasured them all!!!

[brenda-denzler]

A distant <<hug>> for you, Carol. Glad the surgery went well!

[Carol Volckmann]

Thank you Brenda – no dancing for awhile haha, but all went well. Thanks again!

[jen-cueva]

Hi @cdvol3gmail-com, we are all thinking of you and sending you positive healing thoughts as you recover. How are you feeling this afternoon? Any improvements?

Don’t forget any small improvement counts!

Hugs and prayers are coming your way, my PHriend.

[jen-cueva]

Hi @cdvol3gmail-com, so sorry that I missed your update over the weekend. But so grateful that surgery is now in your rearview mirror and you’re home doing well.

It sounds like the power coming back on, your shower, and your feeling comfortable with the surgeon are all positive reports. Please know I am sending you gentle recovery hugs, positive thoughts, prayers, and lots of light, my sweet PHriend.

Thank you for your positive thoughts on the 18th.

No worries, I bet @brendad53 will do a little dance for you.

[brenda-denzler]

Indeed, Jen! I can do a little dance. I can’t tap dance, so whatever I manage won’t be pretty. But dance I can! I’ll do a “Carol” dance down my driveway to get my mail. 🙂

[Terese Tuohey]

Hi, folks! Long time, no talk with you.  It’s been another medical marathon, and I thought all was well and I would be heading to FL for the winter with no added problems.  BUT – I had my 6 mo check up.  Blood:  good, 6 Min walk:  good, heart: eh?  Now what.  Short of breath, heart pounding, some pain in my back.  Scared, you betcha.  Went to see my cardiologist.  Nuclear and treadmill stress test:  UGH!  I couldn’t finish it.  I honestly thought I’d pass out.  Thankfully, they stopped the machine.  The nuclear test was before and after the stress treadmill  (that was all yesterday): Well,  today I got a call from my Dr.  They need to do a LH cath.  Possible blockage, possible stent.  Lovely.  And me on blood thinners.  However, all this needs to be done.  I can’t go on with my heart doing erratic things, and I sure can’t get to FL unless it is fixed.  We are going to try and get this done ASAP.  I just needed to vent all this out, not to dump on you.  My hubby is with me all the way on this.  Bless him!  Prayers, please?  cause I scare easily.

[Carol Volckmann]

Hello Terese, I am so sorry you have hit with this tidal wave of fear and anxiety. You are in my thoughts and prayers that everything that needs to be scheduled and treated with all happen very soon and … that you WILL be on your way to sunny Florida!!

Hopefully your Cardiologist will be on this asap. I believe the  worst part is the waiting and not knowing. Please be patient with yourself. You are in my prayers and I am sending you positive vibes and warm ???? hugs.

[jen-cueva]

Oh no, our dear @tervo! I hate to hear of these new heart complications and your need for an LH cath and possible stents! I know this must be so scary for you and your hubby. Those heart symptoms you report are no fun to deal with, even more so when you’re not sure why and when it happened so suddenly!

My heart is with you as my positive thoughts, hugs, love, and prayers. When is your LH cath scheduled? Hopefully, as @cdvol3gmail-com says, you’ll recover and feel better as you and your hubby are on your way to Florida soon.

Please vent away anytime, and with all of this going on, it’s normal to have anxiety and fear of the unknowns. We are here for you, my PHriend.

[brenda-denzler]

Terese, I scare easily, too, when it comes to medical junk. So I sympathize with you.

You didn’t dump. You vented. And it was a good vent. I’m so scared *for* you. How dreadful! But this, too, WILL pass, and your poor ol’ heart will be refurbished a bit, and you’ll be on your way to the warm, warm South before very long at all.

Hugs, prayers and good, good, good, good, goooood vibrations headed your way. 🙂

[Terese Tuohey]

Dear Carol and Jen,

Thanks for snwering so quickly. The doctor’s office is working on setting up a date for the LH Cath ASAP.  Right now, my pulse is at 110.  And that’s even with the meds I take to slow it down.  Some days it is a nice 75-79, but around noon today, it jacked up again.  All I can do is wait til they find a date for me to get this done.  All I know is I don’t feel like myself.  And I’ve been doing so well …. I will keep you posted as I know things. And thanks for the good thoughts, warm hugs, and prayers.  Love you guys!

[Terese Tuohey]

Keeping you all posted.  I will have the LH Cath next week Friday.  Before that, bloodwork on the 14th, and an ECHO on the 17th.  They told me if a stent was required, it would be placed during this procedure.  I’ll see my doc for a follow up on the 28th.  Maybe we’ll get out of here for FL in Dec. after all…..  And thanks for your kind words, Brenda.  Hope to see you at the CTEPH meeting next week Tues.

[brenda-denzler]

Terese, thanks for the update on what you’re going to have done. At least you may be able to get out and into the sun soon. 🙂

As for me on the call next week, maybe. I’ve registered, but I’ll be in the hospital sleep lab getting electrodes pasted on my head and fitted for a CPAP, so I may not be able to zoom in. (Need I say that I am ***NOT*** looking forward to having a CPAP?)

 

[jen-cueva]

Thank you so much for that update, @tervo. I am sending you extra positive thoughts and prayers on the 17th, 18th, and 28th.

It does sound like you may be off to Florida and the sunshine soon! Please let us know how we can best support you as you prepare and recover from your procedures.

@brendad53, you got this sleep study next week! But this weekend, try to do something you enjoy. How’s your fur baby doing? I know you don’t want that CPAP, but if it helps, it will be worth it.

[brenda-denzler]

I’m envisioning Terese in Florida, basking in the sun. And arriving there AFTER all of these storms have passed (hurricanes and tropical storms), so that she will have most excellent basking weather! 🙂

We are just getting past the storm that landed in Florida a few days ago. It came through here today (NC). I got a weather alert on my phone early this morning. Woke me up. Didn’t have my reading glasses on, so squinted to read the message. I thought it was a flash flood warning, which doesn’t concern me at my elevation. So I went back to sleep. When I got up later, I saw it was actually a tornado warning! And I slept right through it! Sometimes God/the gods protect idiots, thankfully! LOL!

As for the CPAP…they canceled my appointment for this coming week and I feel fabulously free. I was asking too many questions and daring to have expectations for a customized procedure rather than the same “git ’em in, fit ’em up with a mask, send ’em off” routine that they typically use.

I said I wanted to try nose pillows first, not only if I couldn’t stand the mask. I said the thought of wearing a mask all the time made me very angry and anxious, so wanted to start “low intensity” with nose pillows and work my way up to a mask if need be.

I said I wanted my insurance to pay for a CPAP machine cleaning system, as maintaining it by hand was just one more “you need to do this” thing in my life, and I’m kinda maxed out right now and not easily contemplating adding on another thing. This is a priority for me.

I said I really wanted to try supplemental nighttime oxygen first, and explained my impaired oxygen exchange diagnosis and speculated on how that might have played into the initial, home sleep study results. I pointed out that the study results may have been affected by my impaired O2 exchange and thus look worse than they really are re: sleep apnea, when the problem is not primarily apnea.

I said that I used my Snore Lab app last night and it said I snored only 8% of the night, which lasted for 9 hours. Of that 8%, I listened to it and some of it wasn’t me snoring. It was background nose from me messing with the dogs, getting up to use the bathroom, etc. So…..

I found 3-4 medical journal articles discussing CPAP machines. Compliance with them is only about 33%. And even in those whose compliance is good, there is evidence that they don’t necessarily produce all the results they’re reputed to give. A meta-analysis suggested that using CPAP as the “gold standard” for sleep apnea may not be warranted.

So they canceled the appointment until me and my doctor(s) can hash out all of this. And like I said, I feel liberated. 🙂

[jen-cueva]

Hi @brendad53, when do you see your doctor again? I would like to hear what he has to say about this plan. Isn’t he who ordered it? Was that Dr. Ford?

LOL about sleeping through the tornado warning. I’m often awakened by texts or calls about an earthquake that I had no clue happened while I was asleep; hehe.

Like you, I can picture @tervo and her husband soon basking in the Florida sunshine. I remember last year they arrived and started decorating for the holidays as soon as they arrived.

Hugs and love to you both. I hope that storm is done now.

[brenda-denzler]

Jen, I don’t see my pulmonologist again until February, but (long story), he, my PCP, my shrink, the PA who manages the sleep lab, and I (and a host of others) have been in a lively EPIC discussion about my options just short of full face mask CPAP. There are a couple, at least. It’s just getting the docs to agree to them.

It’s difficult for them, and as a result for me, because I am not the quiet, compliant little patient who does as told and has no ideas of her own about what might work best for her. I may, of course, be wrong. But I’m not going to know that until we try.

[Terese Tuohey]

Brenda, I don’t blame you.  CPAP is a Pain!  I had one before my PET surgery.  UGH!  I hated it.  And thankfully, my doc told me after the surgery, that it wasn’t needed anymore.  Now I sleep with O2, and that works just fine to keep my oxygen levels up throughout the night.

If you need CPAP,  when they set you up, remember, you may have to try several nose/mouth pieces til you get one you can tolerate.  Best of luck with finding one you can tolerate.  My CPAP using friends have done that, and they say that now they pop it on, and sleep through the night.  Let us know how it goes.

[brenda-denzler]

That’s what I want to try, ideally. Just O2 overnight. But I’m guessing that is not allowed. I can ask for it, but my impression of the whole “sleep lab” experience is that you are a rat that they run through the same old maze of fitting and testing, using the same steps and the same thing for all the rats. Then, if the rats don’t do well, they will consider trying something else with them. It’s a machine. An assembly-line process of getting folks fitted with CPAPs. In one door and out the other with a CPAP locked down on your face.

I haven’t slept flat for decades. It started because my sinuses plug up when I lie flat. So I began sleeping at an angle. In the last couple of years, I know that my soft palate drops when I lie flat (like for a massage). But it seldom does so when I sleep at an angle, which I still do.

[Terese Tuohey]

To my PHriends,

Just keeping you informed.  I had a stress test last week.  I didn’t make it to the required heart rate.  I thought I’d pass out, actually.  This test was linked to the nuclear infusion that shows up on x-rays (kinda like a VQ test).  Apparently I have a blockage of some sort in one of the arteries for my heart.  Don’t know what or how bad or even exactly where.  I am having an ECHO on Thurs and a LH Cath on Friday this week.  Hopefully, I’ll get answers.  All I know is that a stent will be placed if one is needed.  So, send ood thoughts my way, please?  I’m still planning on heading to our FL home on Dec. 4!

[Carol Volckmann]

Terese, wishing you all good things snd that Dec 4th you will be on your way to the sunshine state! Prayers  and positive outcomes coming your way!!

[jen-cueva]

Hi @tervo, ughh so sorry to hear that is a blockage. But I know that they will place a stent as needed during the cath. It must be frightening and frustrating when this came out of the blue.

My hubby, Manny, had just completed the MS150 bike ride from Houston to Austin. A few months later, he had to have emergency stents placed. His also came out of nowhere.

This week, I’m sending you positive thoughts, prayers, light, and love. I know you will be in sunny Florida decorating for the holidays in a few weeks, my PHriend.

[Colleen]

@tervo I hope your ECHO goes well today and provides much needed answers. Most of all I pray for you cath tomorrow and if a stent needs to be placed that it goes smoothly for you so you can have a happy journey to your FL home on the 4th! Please update us when you feel up to it.

[brenda-denzler]

Good vibrations vibrating in your direction, Terese!

[Carol Volckmann]

Thank you Jen, I am feeling a bit better today – hopefully I won’t mess it up by doing something  I should not do. Hopefully, day by day I will rid nyself of pain. Bright sunny day but chilly 49 but need to take that white tornado for a walk. I hope the rest of the week goes well for you. Many warm hugs ????❤

[jen-cueva]

Hi @cdvol3gmail-com, I’m grateful for any improvement as you recover. Yes, it is often difficult when we want to do so much and recover, like yesterday. Hehe.

Please try and take it easy as you can until you fully recover. I’m praying the pain will subside for you soon, my PHriend. Yeah, stubbornness is a trait we share. 😉

[Colleen]

@cdvol3gmail-com it’s been a few days. How are you doing with behaving yourself and not overdoing it? Are you having Wizard of Oz winds in your area too? Oh my gosh! It has been bad here for hours and it’s still not letting up. I opened our front door to get a package off our porch…@jenc can you guess what it was? and the wind nearly blew me away!

[Carol Volckmann]

Hi Colleen, hope you received my message – having issues of replying to posts. Bright, chilly and sunny here. Wind and rains on there way here Monday. You are getting the terrible winds right down from the Cascades from the East – not normal!

I am somewhat behaving – healing is taking time. Thank you for asking!

How are you doing with scheduling needed appointments fir yourself? You knew I had to ask! Big hug!

[Colleen]

@cdvol3gmail-com the winds never stopped yesterday. It was crazy. We have a basketball hoop in our driveway that I’ve tried to get on it’s side to drain the base because I want to give it away to the kids next door. It is so, so heavy so I haven’t been able to do it. Well, the winds did if for me! I couldn’t believe it this morning was I saw it laying on the ground.

You are somewhat behaving yourself and I am somewhat not scheduling appointments for myself like I should be. Too many excuses available not to make time for it. I appreciate your concern. I really do, thank you!

Keeping your recovery in my prayers!

[Colleen]

@ripple76 asked me to share his recent update. He’s been going over some bumpy roads lately so let’s offer him our support!

On the 29th of October I fell down. I had not been feeling well for a couple of days. My wife called 911 and I was delivered to the ER here in Prescott. I say delivered because I was just messed up.

From an x-ray it was determined I had double pneumonia. I was put on 100% oxygen and taken to ICU. My blood pressure had dropped dangerously low. So there I was in my pj’s (somehow that was how I was dressed) getting plugged with tubes that went everywhere. I remember that they put me on a mask that was hard plastic and drove the outflow to more that double what I was used to. I had been asked, routinely I suppose, if I had a DNR and would I be willing to have a tracheotomy? Good grief!

The following week I had been moved to three rooms, the last was in the regular ward but they had to bring in all the machines I need in ICU. That small room became an obstacle course. No one knew what PAH was and I had to explain it to each shift change. The only therapy I got was high flow oxygen and some antibiotics. The rest of the time was mostly drawing blood and keeping me incarcerated. Some nurses did find that changing my infusion pump was interesting but what a hassle. In the end the decision was made that as soon as I could maintain my normal level of oxygen I would be sent home. I think my pneumonia was a little better but I really didn’t know.

So finally after a conference with my PAH specialist I discovered that he had gotten not one iota of information on my situation. I suppose that is because he is in Phoenix and not connected with the Prescott hospital. I had to explain all this to him and he wanted tests for himself. I conned him into letting me go back to being active even if I’m not up to it.

This just reinforces my skepticism about being hospitalized. The logical thing for a person with CTEPH is to be near a specialist who can handle your case in the hospital.

[Carol Volckmann]

Hi Randy, so very sorry to hear about your fall, double pneumonia, admitted to a hospital that does not know about PAH! That is a triple bummer and very scary for you and your wife.

Unfortunately so many medical professionals, clinics and hospitals still are in the dark about PH.

A similar problem happen to me and I ended up in ICU in Cottenwood, AZ. 1st they did know how to treat pneumonia, 2nd they admitted they knew very little about PH and even less about my medications and pump. It was just at the beginning of covid and the even though the hospital was shut down, the doctors allow my husband to suit up and not bring my own meds but also help me change my cassettes and pump.

The first thing we did was to call my Pulmonologist- he then was able to talk the doctors through what I needed.

When and where we travel I now make sure I have a special number I can reach my team – I learned a big lesson.

I hope you are now on the other side of darkness and fear and are your way to recovery. Please be patient with yourself, I am sure it is going to take awhile before you begin to feel secure and back to breathing better.

You and your wife are in my thoughts and prayers and positive outcomes are coming your way. Rest up and take your time. ????

 

[jen-cueva]

Oh no, @ripple76, this must have been and is a frightening time for you and your dear wife. It’s never fun needing to be in any hospital. But being in some place that has no clue about PH is even scarier.

Although, I’m grateful you are home now recovering. Good grief is right, buddy! When do you see your PH specialist? I hope that is soon so he can check you out well, which I am not confident they did in Prescott.

I’ve been in smaller local hospitals a few times. But after that, I learned it’s better and safest for me to be someplace that is knowledgeable about PH ad has PH specialists on staff, if possible.

My positive thoughts and prayers are with you and your wife at this difficult time. How are you feeling this week? We are here for your support. Please keep us posted.

[Colleen]

@ripple76 is having posting difficulties that we are working on. In the meantime I will share his reply to all of your.

Thank you all for your replies. Linked to friends in this forum is probably the best way to connect. Incidentally when I talked to my PAH specialist he had none of my files from our local hospital. This is puzzling. I am recovering well and expect to be free of the pneumonia and its side effects soon.

[Colleen]

@ripple76 my heart goes out to you and your wife. What you have been through sounds quite traumatic. How is your wife recovering from this scare?

@cdvol3gmail-com has made an excellent suggestion. Ask your specialist what number you or your wife can personally call to get a hold of him and his team if you are stuck somewhere that does not have the knowledge and know how to deal with your PH. Make sure it’s a number in which someone can be reached any time and any day.

We had to do this my son as well and it literally saved him a number of times. Once a doctor INSISTED his Flolan pump would be turned off for 20-30 minutes while he had a scan done. We called the special number, informed his nurse about what was happening and not 10 minutes late the doctor walked in embarrassed stating, “What we will not be doing is turning of Cullen’s pump!”.

An email address can be helpful too.

[Colleen]

@ripple76 asked me to update all of you. Please, let’s all offer him our support.

I am recovering from double pneumonia. My hospital stay was a mess because no one understood my issues with PAH. When I was discharged it seemed as if I had been pushed back quite a ways in the management of my disease. I’m slowly recovering and breathing is getting better but I have to sleep partially sitting up. This is has really depressed me. Now my specialist has decided he wants a closer look at things so an angiogram is in order sometime. That is a quick summary. Lots of tough details I’ve left out.

[brenda-denzler]

Ripple, double pneumonia is a big hurdle to have to get over. I’m really sorry your PAH issues were worsened. How can it be that medically trained people don’t even begin to get it…? Well, a gentle <<hug>> from here in NC.

[jen-cueva]

Hi Randy @ripple76, I’m sorry that double pneumonia set you back. That is not a good combo with PH and all you have going on. It certainly is depressing and frightening when we hear that our disease has progressed. Please know you’re in my thoughts and prayers as you continue to recover. Those slow improvements is a positive but take baby steps. You got this, and we are here for you, my PHriend.

Let us know when your angiogram is scheduled. Gentle hugs are coming your way from San Diego.

[Colleen]

@ripple76 / @ripple81 checking-in to see how you are doing? We are here to support you.

[brenda-denzler]

Wow. I am impressed in a horrified kind of way with all that you two have been through. Yikes! I’m glad that you’re better…….

[Colleen]

@jenc you have been on my mind all day. I pray the neurologist consult went well today. Have a relaxing weekend and update us on Monday when you are able.

[jen-cueva]

Hi @colleensteele, thanks for your thoughtfulness. Unfortunately, this appointment was rescheduled until 12/13 after I took a nasty fall on Thursday evening.

Why can’t our bodies cooperate? Doesn’t it realize the holiday season has begun?

[brenda-denzler]

Jen! We’re going to have to have a talk with your body! I hope you’re not too badly hurt. <<hug>>

[jen-cueva]

Hi @brendad53; not as bad as it could have been. However, I now have 5 staples in my head. I see my PCP today, and if they aren’t ready to come out, I doubt I go back Monday or Tuesday to have them removed.

Otherwise, I’m sore and bruised and have increased fatigue and brain fog. I was hoping it knocked some things around to offer positive effects, but not this body, LOL.

[brenda-denzler]

Staples?!!! That’s not just a little cut! Did you get a concussion with it? I’ve had a couple of those. They really hurt.

[jen-cueva]

Yes, ma’am, staples and a concussion. Plus, a large hematoma. Not fun at all. The pain is more of a soreness, but I manage chronic pain daily, so challenging to tell.

Thankfully, I was out until a few hours before I was discharged home. Of course, it bled a lot, too. I’m sorry you’ve had a few yourself.

[brenda-denzler]

Yeah, and they take a while to clear up, those concussions. My most “you did WHAT?” concussion was the one I got from falling out of a chair. Seriously. <<insert eye-roll here>>

If you were out for that long, then that was a serious, serious fall. Poor baby!!!!!!

 

[jen-cueva]

Oh wow, @brendad53, falling out of a chair, huh? That sounds like something I would do because I’ve always been clumsy.

I’m grateful I wasn’t aware of what was going on. Thanks for your warm wishes. Happy Thanksgiving weekend to you.

[Colleen]

Yes, sorry everyone…I found out later in the evening that @jenc had to reschedule her appointment due to this nasty fall. I figured I would let Jen update all of you.

How did things go at the PCP yesterday, Jen? Staples out yet? How are you feeling? I’m so worried about you!

[jen-cueva]

Hi @colleensteele, my appointment with my PCP yesterday evening went well. I didn’t get the staples removed. She says there is still too much swelling and that the hematoma needs to heal. She made an appointment for Monday afternoon to have them removed, hopefully.

She did have me do labs so she could keep an eye on my kidney function and sodium.

Overall, I’m feeling alright. Brain fog, fatigue, and nausea are the worst. Headaches I can tolerate. IDK if the nausea is from the concussion or the antibiotics that gave me for prevention. Of course, she reminded me to limit screen time and reading.

Thanks for your concern and support. I’m grateful for you this Thanksgiving week.

[brenda-denzler]

The fact that you fell hard enough that you were out of it for quite a while is very concerning. Special hugs coming your way, filled with healing vibes.

[jen-cueva]

Thanks for your hugs and healing vibes, @brendad53. I’m hoping to have my staples removed this afternoon. I can’t wait; I am so excited to wash my hair, LOL.

I hope you enjoyed a relaxing Thanksgiving. It was low-key here. I should have caught up on my “beauty rest.”

[Terese Tuohey]

Hi, folks!  Good news to report. I had my LHCath yesterday, and the Doctor found NOTHING!  The stress test that said I had a blockage was a false positive.  So there is nothing wrong with my heart. AMEN!  Thank you for all your prayers and good thoughts. I will see my cardiologist on the 28th for a followup with all the data collected so far – heart monitor (which didn’t show anything to worry about), blood work, stress test and heart cath.   I’ll be glad to see November go!   But in the meantime, I, and all of us, have so much to be thankful for – not the least is your online friendship.  Happy Thanksgiving.

[Carol Volckmann]

YAHOO!!!! So happy for you. You and and your family must be sooooo relieved! What a wonderful THANKSGIVING for you – very special. ????❤❤

[brenda-denzler]

I’m having a really cr**py day. (Car problems.) So your news is lifting me out of my automotive funk and making me smile and feel happy again! Yeah!!!!!! I’m so thrilled for you. Thank goodness for blessings like that!!!!

[jen-cueva]

Hi @brendad53, I hope that your auto issues are improved this week. That is never fun. I’m grateful that Manny is mechanically inclined, so he can usually fix anything we have that needs it.

Have a Happy Thanksgiving week!

[brenda-denzler]

Afraid it didn’t improve, Jen. $200 early last week for a new battery, and then the check engine light came on. Mechanic today said minimum of $470. And if I had everything done that he thinks I should do, nearly $1200. Merry Christmas, huh….?

[jen-cueva]

Ughh, that’s never fun, @brendad53. Too bad you aren’t closer; I would have Manny check it out and see if he could do it for you.

Not the Merry Christmas you were hoping for, I bet! Hugs and prayers, my PHriend. Maybe a few money trees will pop up in your backyard.

I’m sorry, that is not cheap, and I hate spending money on things like that. Although we should be Ok knowing it will get it where we need to go, right?

[brenda-denzler]

Y’know, Jen. I have 4.2 acres with lots of trees. Oak. Maple. Redbud. Hickory. Pine. Dogwood. But to the best of my knowledge, no money trees. <<sigh>> Just my luck! 🙂

[jen-cueva]

Well, darn it, @brendad53, with those 4 acres, you will have one hidden somewhere. Maybe you’ll stumble upon it one day.

[jen-cueva]

Hi @tervo, that’s such excellent news to start the week. Yes, we are certainly thankful that all checked out ok and that you don’t have any blockages.

Do you think the symptoms were caused by stress, worsening your PH, or something else? How are the symptoms now?

I’m sending you extra positive thoughts and prayers on the 28th. Then you should be on your way to the sunshine states soon after that!

Thanks for sharing such positive news with us. We are always here. Yes, I, too, am thankful for the PHriendships here in the forums. Happy Thanksgiving y’all!

[Colleen]

@tervo I really needed to hear some good news today! Thank you for providing it! I am so-so happy and relieved for you! Happy Thanksgiving indeed!

[Colleen]

Cullen and I both somehow slipped up today! We have been discussing his upcoming lung transplant appointment but somehow spaced the fact that today was the 28th! Yep, we were a no show! I have to say, they were more concerned than upset because it is unlike us to miss appointments with no communication.

It is a miracle that his doctor who is super difficult to get in with, has an opening tomorrow (Tuesday) at 9AM, so – we will be in Seattle. Cullen will have his routine PFT, chest-xray, labs and clinic appointment (hopefully a flu shot will be included). Fingers crossed for a good report!

Going to jump ahead to December because the news is big – Cullen will be flying out to Louisiana on December 6th to stay and visit with his brother until January 10th! This will be a lot of firsts for him – first time flying alone (he’s a bit nervous), being totally responsible for his meds without my backup, and being away from home without a parent. Have to reschedule a heart transplant appointment for when he returns. Doesn’t have any concerns to report so I don’t think it will be an issue.

So excited for him and Aidan! Have to say though, Christmas music is hitting different this year. My first Christmas and New Year without my kids at home!

Please keep Cullen’s safe travel in your prayers. He’s worried about them questioning all his meds. Thank you!

[brenda-denzler]

Cullen (and his mom!) are in my thoughts and prayers. A successful trip going out and coming back. Health throughout it all.

[Colleen]

Thank you so much @brendad53! I truly appreciate the prayers and positive thoughts!

[Colleen]

We of course got out first snow of the season today when I had to drive to Seattle. It wasn’t too bad though and the best news is, Cullen received all good reports. His PFT and chest x-ray looks great, his lungs sound good and the overall clinic visit went well.

But then he needed times labs. He was already late for them but his doctor said to proceed and she could do the math and figure out his levels even though it was past when we normally would have the labs drawn.

@cdvol3gmail-com we thought of you because I believe you have had major problems at the same lab / same facility. We have yet to have a good experience at the hospital lab and today was the worst. Cullen has sworn that he will never have his blood drawn there again.

Already late for timed labs it to the “students” 1.5 hours to get organized and multiple attempts to draw his blood. Cullen tried telling them which doctor and which labs needed to be drawn but they claimed they didn’t have access to that information and all they had were labs for a “study” and that was what they took. Luckily 2 of the most important tests he needed were on there but not sure the others were and it may have been way too late at that point for them to give true results anyway.

Cullen said he appreciates it’s a teaching hospital and students need to learn but there appeared to be no one supervising them and they were making jokes about how poorly they were doing. I know in the waiting room I heard patient after patient come out complaining about how many times they were poked.

It was the guy next to Cullen getting stuck like a pin cushion who was going through transplant evaluation that Cullen was most concerned about. That man needed many vials of blood drawn and they were barely getting a drop out of him. Cullen, the kid who rarely gets bent out of shape about anything called the transplant office when we got back to the car and reported what he experienced and what he witnessed. He was furious!

Not only that, by the time he was done he was almost 2 hours late on his morning meds and feeling sick.

So, I guess this is just a rant. It would have been a good day if not for the lab experience at the end of it! So frustrating!

[jen-cueva]

Oh my, @colleensteele, what a day! First, so grateful that Cullen had good news at his appointments. I am so sorry he experienced that at the lab! How horrible for the poor guy next to Cullen! Thanks to Cullen for letting them know what was happening at the lab. He was more concerned about others than himself; I know that apple doesn’t fall far.

When we texted, the snow was falling, and he was headed to the lab. You were more concerned about the snow and driving home safely. I am so sorry that anyone, especially our sweet Cullen, was upset, as he should have been. Sad that his clinic day ended on such a sour note. Hopefully, y’all stopped to get a snack and take meds and SBUX to help the mood.

I hope he won’t need to go to the local lab to have more labs they may have yet to do.

I’m staple-less with (mostly) clean hair. So, that’s a positive note for me this week.

[brenda-denzler]

Colleen,

Yikes!!! You know what I got out of that story (other than the frustration of being in the hands of unsupervised incompetents who were joking about it)— I got a picture of Cullen as a strong young man with an “empathy compass” that points true north.

[Carol Volckmann]

Wow, Collen, you and Cullen have been through the wringer!!

First, really wonderful news on Cullen’s PFT and chest x-rays results – what a wonderful early Christmas present!

I just finished a survey for UW Medical and wrote about their lab to the Medical Director. Cullen’s experience is what so many patients have reported. There is no excuse! It is totally unacceptable! I have refused to use their lab and have lab work done elsewhere and sent into my Cardiologist and Pulmonologist – both have expressed they have heard the same from their other patients. I am so glad Cullen spoke up!!

Another WOW! Cullen’s first flight alone – I would be a bit anxious. Does he have a letter from his doctors explaining his meds?

He and Aiden will have such a grad time – what a hoot for the two of them!!

December 6th, Cullen will be in my prayers and sending him all positive thoughts keeping him safe and happy ????.  You too will be in my prayers and thoughts. This will be quite a time for you as well. Lots of love and very big warm hugs Colleen.

 

 

 

[Carol Volckmann]

Colleen, you and Cullen have certainly been through the wringer!!

Wonderful news about Cullen’s PFT and x-ray. However his experience with the lab and what he witnessed is totally unacceptable!! I added my experiences in a survey that I was sent and asked that my comments be sent to the Medical Director of UW Medical. If I do not get a response I plan to wrote a letter to him.

I have refused to use their lab. I have my lab work done elsewhere and have it sent to my doctors. Both my Pulmonologist and Cardiologist have been told by many of their patients the same unprofessional, incompetence and abusive behavior.

On a higher note – I am thrilled to hear about Cullen flying off by himself and meeting up with Aiden. They will have such a grand time together – anxious yes but it will be great.

He will be in my prayers and positive thoughts for a safe and fun trip! I will have you also in my thoughts and prayers – this is a tough one for you I am sure. Lots of gentle hugs filled with love!

 

 

 

[jen-cueva]

Hi @cdvol3gmail-com, you, too, have experienced the unacceptable behavior that Cullen did at UW. Good for you and Cullen both for speaking up for those who haven’t. This is by no means acceptable.

I get it, I also am seen at a teaching hospital, but this is not how my labs have been.

But oddly enough, the first nurse planning to remove my staples this week had to get help. It was her first try at the removable staple, and she was uncomfortable with these being so tight on my head. I thanked her for asking for help instead of trying to torture me. Hehe. The poor young lady was almost in tears, and I told her it was no worry. I’m sorry your first staple removal was in my head, all mangled with hair and dried blood.

How are you feeling this week, my sweet PHriend?

[Carol Volckmann]

YEAH!!!! Staples OUT! Clean hair! Has to feel really good!

You’re right when a nurse, tech or a doctor feels a procedure is not in their comfort zone, they need to speak up.

When I was hospitalized in Cottonwood AZ, Ythe doctors admitted they were unfamiliar with my meds and PAH and allow me to take my own meds and even let Dick come in with cassette/ pump changes even when the hospital was is total lock down.

Cullen’s experience and the man near him was sooo unacceptable.

We are fine – cold with about 3″ of snow – Cloud loves it!

So happy for you – now, when are you going to reschedule your appointment with the neurologist?

Hugs with lots of love!!

[jen-cueva]

Hi @cdvol3gmail-com, thank you for your support and excitement, my PHriend. I am feeling much free with those staples out.

Your experience in AZ sounds like they did exactly what they needed to do, even if it did break some lockdown rules. I am grateful they spoke up and admitted they were lost with your pump.

Yes, as you mention that experiences that Cullen and those other poor people in the lab that day were not treated in any acceptable way. Thankful he did speak up, especially the usually laid-back, go-with-the-flow young fellow he is.

Too funny, I picture Cloud running in the snow; how cute and a joy for you and Dick to watch! That’s what life is all about!

Yes, my Neurologist appointment is rescheduled for 12/13. I’m sending cool but no-snow hugs from San Diego. I’m freezing today; it’s 60! LOL

[Colleen]

@cdvol3gmail-com Cullen swore the last time he wouldn’t have labs drawn there again but sometimes it’s unavoidable. Now he says he will tell his doctor unless it’s a matter of life or death he will wait and have labs drawn where he prefers to go. The care at that hospital is wonderful it’s just the lab that has major problems and it’s been going on for way too long!

Yes, tomorrow morning is the big moment, Cullen leaves for his big adventure. I’m more nervous about him handling the airport logistics coming and going than I am anything else. Once he is there with his brother I’ll feel more at ease.

Oh and…@jenc you will laugh at this too, I only typed and printed out about 20 pages of medical information for him to take with him. Also created a VERY detailed chart to make sure he fills his weekly pill case without confusion. He just looks at me like, “Mom, I haven’t been living under a rock for the past 8 years!” LOL! Well, it makes me feel better that he has this stuff.

[brenda-denzler]

Colleen, I laugh with you at your detailed instructions. I have come to realize that there are times when I need to say something to certain people, even if in truth they don’t really need to hear it. 🙂

It’s kinda like prayer–as much for the one doing the praying as for the one being prayed to. 🙂

[Carol Volckmann]

You know Cullen will be in my thoughts tomorrow! YOU are in my thoughts and certainly will be tomorrow!!! And my prayers for you both.

Looking forward to hearing Cullen is safe and sound with Aiden!

I just love how you wrote out at least 20 pages of detail notes for Cullen – of course you did!!!

Hugs filled with light, joy and love….

[jen-cueva]

LOL, I hear Cullen saying that to you super detailed book to take along with him, @colleensteele.

I’m incredibly proud of him and so excited to hear about some of their brother adventures. I texted him to eat some yummy cajun seafood for me, LOL.

This is such a milestone for all of y’all. My heart is with you, and safe travel prayers and vibes are with Cullen. I have no doubt he has got this!

[Colleen]

Thank you @cdvol3gmail-com @jenc as I type this Cullen is almost there. Everything went so smoothly today! Praying his arrival does too!

LOL, when I showed Cullen where the pages of medical notes were in his bag he asked, “What, no hard cover?”.

I snuck a Christmas box into his suitcase for him and Aidan to open tonight. It has a very small battery operated lighted tree, a box of string lights for Aidan’s desk where I know they will spend a lot of time gaming, a stocking for each of them filled with their favorite candy and Santa hats. I called Cullen once he was at his gate and told him it was in there. He sighed, “Is that why that suitcase felt heavier than it should have!”. Hey, it was still under the 50lbs we paid for so hush! You can’t take the mom out of me! (Oh, @jenc and Christmas cards for each with Starbucks gift cards in them…I couldn’t forget those!)

[Carol Volckmann]

Oh Collen you are one of a kind, they broke the mold when you were born!

How exciting for Cullen, how exciting for Aidan – special surprises await them both. I just love your sharing your moments – thank you, you have made this day very special for your sons as well as folks here on the forum!!

You and your family are in my prayers every day wishing you all the very best can offer – hugs full of joy and love ????❤️.

 

[Colleen]

@cdvol3gmail-com funny follow-up to the gifts I packed. For a guy who has a talent for fixing broken things, Aidan is like a bull in a china shop when it comes to fragile items. If it’s easily breakable, he will break it. We all know this and tease him about it.

The guys call me and I can’t understand anything that is being said because they are both laughing so hard. Aidan opened the box, took out the tree and within seconds…broke it!

It has one of those, “push me” buttons so you can test to see what it looks like lit up. He immediately yanked that off not realizing the wiring to the battery box was attached, so he accidently ripped that out too.

Cullen said Aidan froze, looked up at him and they both burst out laughing. It barely cost me anything. I wasn’t upset and they sounded like they did when they were little and laughing their heads off, so that made me happy.

I ordered them a much nicer, small lighted tree that will arrive in a few days…one not so easily breakable. LOL!

[Carol Volckmann]

Colleen,  you and your boys crack me up! You had me laughing outloud!!!

What a very special time for both of them and for you and Brian  – how proud you two must be.

It will be a very different kind of Christmas you you two enjoying from a far the antics of Cullen and Aiden. I do hope you and Brian are going to also have a very special time for yourselves  – you both deserve it!!

Sending you and the boys light, joy and love.

????❤️⛄️????

[jen-cueva]

LOL, @colleensteele, this was such a funny story already. I love hearing about these special moments. I know this must be bittersweet for you and Brian but know you are incredibly proud of your boys.

And of course, you would send a bigger and better tree. Let’s hope Cullen doesn’t let Aidan near it, hehe.

Wouldn’t you want to be a fly on the wall after about a week together? Hehe. They had such a special bond that made my heart so happy.

This year, Christmas will be quieter for you and Brian. However, I bet you have several calls from the boys to keep you updated. Big hugs, lots of love, and prayers are with you all this holiday season. What wonderful memories they will make.

[jen-cueva]

Hi @colleensteele, I knew I had skipped this part but we chatted about it on the phone. I am so excited about Cullen next week. This is such an incredibly huge milestone for him and you all. I’ll be saying extra prayers for his safe journey and your Moma bear heart not to be so worried.

But how cool is this for the boys? They will be together at Christmas and New Year. Yeah, the holidays will be different for you and Brian. But I hope you two can take this time to enjoy each other, rest, and refresh for the new year ahead. It’s bittersweet as our kids get older, but such joy in seeing them happy, right?

So exciting!

[brenda-denzler]

My personal note follow-up:

I developed a written plan for what I wanted to try with regard to starting me on a CPAP. A statement of the problem, the traditional approach, what I wanted to try instead, why I wanted to try it (medical and psychological reasons), a proposed metric for evaluating its success at each step….

I sent this to the PA in charge of my care in the sleep lab, begged him to work with me on this, and said if he was too uncomfortable, would he please pass me along to a colleague. He took me up on that.

So yesterday I spoke with the fellow who was assigned to my case. She came in with a nurse who did nothing but sit and listen. After we had talked, she got her attending, who delivered the “standard of care” spiel, with me responding with the “patient-centered care” spiel. Meanwhile, as the attending and I talked, the fellow was typing furiously into the computer. We settled on me trying an oral device to help with the apnea.

I checked the clinical notes from this visit last night. There was ONE line in them, about the trial of an oral device.

So where are all of the notes the fellow was typing so furiously? What did they say? I will be finding out.

I hate doctors. I hate insurance companies. I hate the world of medicine in general.

[jen-cueva]

Hi @brendad53, I’m sending you extra love and positive thoughts that the oral device will help. Which device is it? Is it like one of those mouthguard devices? You should let us know your experience since we have several sleep apnea members.

I’m sorry about your many frustrations with the doctors. I can also understand your point. Big hugs are coming your way.

[brenda-denzler]

Not sure what kind, Jen. The sleep clinic folks seem to have a strong preference for washing their hands of any “fix” for the apnea issue that does not involve a CPAP machine with face mask. They said the dentist has to fit me with one, and I have yet to contact my oral surgeon (if she’s still in practice) to arrange a consult.

[jen-cueva]

I see @brendad53, so it doesn’t sound like you’ll have any solution for this soon. Will you be calling your oral surgeon to see if she is in business and can help?

I’m sorry this must all be so frustrating! Big gentle hugs from the cooler San Diego today.

[brenda-denzler]

Yeah. Will call my oral surgeon next week and get the ball rolling on an evaluation for this.

[Colleen]

@brendad53 I hope that ball has started rolling or will soon. Wishing you well as always.

[jen-cueva]

I hope that you have this ball started since it’s already Tuesday. Time flies, doesn’t it? Please do keep us posted, @brendad53.

[brenda-denzler]

Thanks, Jen. Actually…I don’t have the ball rolling yet. I’ve had a busy calendar for the last 5-7 days, and as you know well, we all have limited energy. So I haven’t done much. I have made a list of dentists in this area who do sleep medicine work, but no calls. So I guess that’s some progress.

[jen-cueva]

Hi, @brendad53. That is some progress. I relate; my “spoons” have been extremely low lately. That frustrates me so much when I have things to do.

[brenda-denzler]

Some days, all my spoons are in the dishwasher. 😉

[Colleen]

@brendad53 I just took a sip of coffee when I scrolled down to all your spoons sometimes being in the dishwasher. I laughed out loud and choked a little. LOL!

[brenda-denzler]

Good! You’ve made my day! 🙂