Is your schedule heating up with appointments this July?

[Colleen]

@jen-cueva thought I would answer you here about scheduling my appointments. I was seen by a cardiologist last Monday. He scheduled an ECHO for August 5th and I’m supposed to get a 48 hour heart monitor placed sometime this month.

This year it feels like Cullen constantly has appointments, labs especially. I hope they can slow down for him when he starts college.

How is your July going medically?

[jen-cueva]

Hi @Colleen, thanks for the update on your appointments. Our incredible caregivers have to take care of themselves, too. Right, @V.R. Peterson? (I haven’t seen you post any updates on yourself since your eye surgeries.

Colleen, please keep us posted on your cardio appointment next month. I would hope they ordered the heart monitor before your appointment.

Yeah, constant labs can be draining, especially when medications are being adjusted at the same time. Hopefully, Cullen’s kidneys improve some, and he will have a break between labs. I know he is most excited about going off to college!

[Roger Bliss]

I have been staying away from doctors this summer compared to last. I have my monthly infusion and have an appointment with an allergy doctor. I need to find out why there are very few prescription meds I can take.

Kind of interesting that the more I stay away from doctors and meds the better I feel.

[carol-volckmann]

The summer is heating up – medical appointments are. Fortunately weather wise it stays pretty cool here on Puget Sound.

Both Dick and I have multi tests, labs and doctors appointments. Dick has real balance issues that physical therapy has not been the answer and has had 2 TMIs and I had to call EMS, by the time they get here he is fine so CT Scans, MRI, another heart monitor. We need to find out what is going on.

I will be seeing my Rheumatologist, labs, a consult with a surgeon about a hernia that has appeared. That will take up July.

All of that may sound dire, but we are doing okay. Wishing you, Colleen, the very best of outcomes and do please keep us posted. You are in our thoughts and prayers 🙏 ❤️ for Cullen too 🙏 ❤️

[jen-cueva]

Oh wow, @Carol Volckmann, I am sorry to hear that Dick is experiencing TMIs, and nothing is helping. I will keep you both in my prayers, my PHriend. Plus, your new hernia is also new for me to hear about, but it sounds like you both have lots of busy medical events this month.

At least your temps are not too hot, just your medical calendar, LOL

Please do continue to keep us posted on both you and Dick. We have to take care of our loving caregivers. Also, give Cloud some big puppy dog love. 🤗🐶

[Colleen]

@Carol Volckmann I am so sorry I didn’t see this post sooner! I’m concerned for you and Dick! I really hope your hubby gets answers and proper treatment soon and hernia surgery goes well for you. Please let us know when it gets scheduled for. Are you in a lot of pain? Keeping you and Dick in my prayers as always! 🙏

[Colleen]

Cullen goes in for a sleep study tomorrow (wed.) night to test for sleep apnea. His doctor is on the fence about whether he really has it or not. Hopefully the test will provide accurate results.

Thursday I get my 48 hr. heart monitor placed.

Taking things week by week so that’s the current update for us.

@jen-cueva how are you doing friend? What’s next on your calendar and any results from previous appointments?

[jen-cueva]

Hi @Colleen, I hope Cullen can sleep. His sleep study tonight will give them the necessary information. Brian had sleep apnea, didn’t he? I know Manny sleeps much better since he wears his CPAP.

Hopefully, your 48-hour heart monitor will give them anything they need for your health. You know, take it day by day here, so get it!

I am doing OK; yesterday, I had a chest x-ray and EKG to rule out any new heart issues. I’ve had pain in my right rib/flank area since Sunday with no relief. They think it could be shingles, but there is no rash. I will monitor it for rash; if not better by early next week, I will have to follow up again.

My labs are about the same as last time, but not quite yet to my baseline, but I’m getting there. I have an appointment later this m month with the cardio specialist for my POTS/Dysautonomia. Thanks for the asking.

I know you are managing your care and helping Cullen and both parents. How is your mom doing since the home health nurse is not coming now? Don’t forget to make time for yourself, as this is yet another busy season for you, my friend.

Keep us posted on Cullen’s sleep study and your heart monitor results. 🤗

[Colleen]

@jen-cueva curious why they think it might be shingles. Is there a blood test for that? I’ve heard shingles can be awful so I hope it’s not that, but I don’t want it to be anything else either. Hope you get relief soon and it turns out to be nothing to worry about!

As far as everything else goes…slow and steady wins the race! Prayers for you always!

[jen-cueva]

Hi @Colleen, Well, nothing they did indeed pointed to shingles. However, because of the type of pain and nothing relieving it, they thought it was a possibility. Although I have no rash, I have itching and discomfort. Plus, they ruled out anything else they could think of, and it’s not uncommon to have shingles without a rash. Because many of us are within that age range that shingles tend to occur, here’s a link below.

https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/shingles-not-just-a-band-of-blisters

They haven’t begun any treatment yet, and I am monitoring for redness or rash. But I will call and update my PCP that the stinging and itching are worse; it’s not a rash but some reddened areas. Stay tuned, and thanks so much for your thoughts and prayers, my friend.

mayoclinichealthsystem.org

Shingles: Not just a band of blisters

Learn about prevention and treatment of shingles, a virus related to chickenpox, which causes a painful, blistered rash.

[Colleen]

Oh my friend @jen-cueva I hate that on top of everything else you are possibly dealing with shingles. Are you able to take benedryl or anything to help the symptoms? Are you able to sleep at night? I’m worried about you!

[jen-cueva]

Hi @Colleen, Thank you, sweet friend, for your thoughtfulness and concern. But I am feeling better this week. The pain isn’t nearly as bad, and because of my decreased kidney function, I was only taking Benadryl once daily over the weekend.

The rash worsened but now it’s not unilateral, so confusing and most of it is on my truck, right side and rib – shoulder areas and now both sides of my face. I starrted an antiviral over the weelkend but that too only half the recommeneded dosage. I m hoping my worsening in labs , mostly kidneys on Friday is due to all of this inflammatory and viral issue that I am managing.

I’m grateful this week is starting off better for me. But I was MIA all weekend and would love a do-over, haha.

How are you and things going with your and Cullen’s appointments?

[Colleen]

Oh my @jen-cueva ,this is an example of how PH patients have to deal with common health issues in addition the the rare! Does it seem to be effecting you PH at all? I could see where maybe the discomfort might effect your breathing?

The past few weeks, this one especially has been extremely busy with appointments for Cullen, my parents and myself! I got so excited today when I looked at my calendar and didn’t see ANYTHING on it for next week, but Cullen ruined it. LOL! I forgot to add his lung transplant appointment on August 1st.

[jen-cueva]

Hi @Colleen, thanks for your ongoing support. Yeah, unfortunately, we don’t get a break from the other health struggles that others deal with because we have PH. But it would be nice, right?

Thankfully, the Medrol Dose Pack helped my breathing, and the antiviral has helped with the pain and redness. I am hopeful it was some virus, but I am not 100% convinced it was shingles.

Aww, those appointments are creeping up. Plus, you have four to worry about and schedule. I hope and pray you had some rest this weekend. 💜

[Colleen]

@jen-cueva happy to hear treatments has helped with whatever this has been.

I’ve been wondering if there has been any research regarding how shingles might effect PH and if it could present differently because of treatments a patient might be on. I did a quick search and didn’t find anything but learned something I didn’t know. Shingles can put people, especially women, at risk of heart disease and stroke. Did you know that? I really wish they could determine for certain whether you have shingles or not and if they can’t, that they are extra vigilant at monitoring your heart.

Here is one article I read.

https://www.acc.org/about-acc/press-releases/2017/07/05/09/53/shingles-increases-risk-of-heart-attack-stroke

[jen-cueva]

Hi @Colleen, Thanks so much for your support and research, as I have not yet looked into this. However, yesterday, I had my PH appointment, and I told him I was not 100% convinced it was shingles, but that nerve pain was undoubtedly new. He agreed, but double medicating with a Medrol dose pack and antiviral is working along with low doses of Benadryl. H also states he is happy to hear that it didn’t seem to affect my breathing much, but I also was lying low and doing nopthing much all week.

Like you, I would love it if we knew a definite. But they have done a recent chest x-ray, EKGs, and an Echo on Friday. There is a tiny bit of change in my EKGs and Echo, but we are thinking and hoping it gets back to my baseline now that I’m done with the treatments, except for a low dose of Benadryl as needed.

So, because of my complicated health history, they at Urgent Care were doing EKGs and chest X-rays early on. I didn’t realize that was a concern, especially for women, so thanks for sharing, Colleen. 🤗

[carol-volckmann]

Hi @jen-cueva and @Colleen , thank you both. Your care snd support mean so much. Sunday Dick goes in for another MRI this time on his upper spine and neck. He also just received another heart monitor he needs to wear for 14 days.<div>

I have another appointment with a surgeon at UW Hernia Center later next month unless it gets worse. Right now there is no pain, it is kinda soft and I can push it in. Also having another SIBO breathing test and then will see someone at UW Gastrointestinal/Dijestive Center. Don’t know when that will be yet.

Colleen I hope Cullen’s sleep test had results that will help him, please let us know. I also hope your heart monitor will give you some feedback that will help you get a handle on your next steps. My heart ❤️ and prayers 🙏 surround you sweet woman – you have so much on your plate.

Sweet friend Jen, glad to hear your labs are still going in the right direction – near your base line with a bit if extra to keep you moving forward. I don’t know about this other issue along side of POTS. Please keep us posted to those issues too. I will have Google it.

Sending lots of warm, gentle hugs 🤗 filled with good outcomes, energy and LOVE ❤️ to you both.

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[Colleen]

@Carol Volckmann have you and Dick been able to enjoy the summer at all or has health really taken the sunshine out of it?

[Colleen]

@Carol Volckmann checking in to see how Dick’s MRI went on Sunday. How are you both feeling? Were you able to rest this weekend?

[jen-cueva]

Hi @Carol Volckmann , my sweet PHrioend, how did the MRI for Dick go on Sunday? I must apologize because I believe you sent me a text over the weekend, which was accidentally deleted. So, I doubt I responded. I cleared many old texts, but I think I accidentally erased one. Was it from you, or was I dreaming? I did sleep a ton over the weekend despite a low dose of steroids and antivirals.

Please resend if you can.

[jen-cueva]

Hi, sweet PHriend, @Carol Volckmann; wow, it sounds like you and Dick are both running hot all month long. It’s a heavy medical calendar. I hope and pray you both will get some much-needed information and relief. Then maybe August will be a cool-down month for medical appointments.

Oh, I am sorry. Dysautonomia is the word you aren’t familiar with. Here’s a topic I found in the forums: We were discussing things like POTS and dysautonomia, etc. Maybe this will help you some. It’s basically an umbrella term for disorders of the autonomic nervous system.

https://pulmonaryhypertensionnews.com/forums/forums/topic/ph-and-autonomic-dysfunction/#post-40760

Thank you again for your thoughtfulness and support despite your overloaded plate of medical concerns at home, my PHrioend. Please keep us updated on both you and Dick. 🤗🙏

Enjoy the simple joys this weekend!

pulmonaryhypertensionnews.com

PH and autonomic dysfunction - PH and Co-Existing Conditions - Pulmonary Hypertension News Forums

PH and autonomic dysfunction - PH and Co-Existing Conditions - Pulmonary Hypertension News Forums

[carol-volckmann]

Hi @jen-cueva and @Colleen Thank you both so much for reaching out with your support.

Dick’s MRI did not nail down anything. Our PCP doc is going back to crystals and has put Dick in touch with a doctor that helped him when no one could find anything.

I don’t see the surgeon till the end of August for my hernia unless it becomes ugly. I am also taking a new SIBO breathing test next week. Heavens knows when I will get an appointment with a gastroenterologist at tge digestive center at UW. And the beat goes on …

Colleen, did you get the results back from your heart monitor – I hope news was good and or meds to keep everything under control. I guess I also missed hiw Cullen’s sleep test showed.

I hope you are able to take some time for yourself this weekend and maybe watch a good comedy 😄! You could use a good laugh!

Jen, have your doctors thought of putting you on Gabapentin. That stuff was the only med that gave me relief from shingles. Shingles is really nasty – just no fun at all 🥵. I hope you also have a restful weekend, be kind to yourself maybe take in the same comedy that Colleen chooses hehehe.

Love you both sending many hugs filled with HOPE! 😊🤗❤️❤️

[jen-cueva]

Hi sweet PHriend, @carol-volckmann, you are so kind. You and Dick have had an overloaded plate, and I know how frustrating it is when the tests are inconclusive. I always think that’s a positive, but often later, teats confirm other issues. Hopefully, the other specialist will have some helpful information after reviewing the MRIs on the last two Sundays.

Let’s hope your hernia doesn’t get “ugly” within the month. Although I don’t think anything about you is “ugly,” my friend. 🤗

Ahh, another SIBO breathing test? Didn’t you have some in the past? Sorry, my CRS kicks in more each day. Hehe.

I am already on Gabapentin, a low dose twice a day for leg pain, and have been for years. But on the lowest dose, it can’t increase with my poor kidney function. I’m also happy to say the pain is nothing like it was for about a week. Now, it’s the lasting effects that the prednisone left with me, and I hope the side effects resolve within a few days.

Wow, can you believe we are in August this week? Where has the year gone?

Thanks for your updates and support. I hope you and Dick have a much better week and taking care of one another. Also, hugs and love to you two and Mr. Cloud. 🤗💜

[carol-volckmann]

Hi Jen @jen-cueva thank you again for your thoughtfulness and support. Yes, SIBO test again – I did have one a year ago and it was positive, but this new gastro/digestive dept wants another one before they assign me to a new doc.<div>

<div>

I hope you truly are feeling a bit better today and are able to get back towards normal (whatever that is) very soon. I’ll put in lots of positive wishes, vibes, energy and extra love ❤️. 😊🤗🌷

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