-
What Is On Your Medical Calendar For January?
Happy New Year! Has it started off slow and steady or did you hit the ground running to medical appointments?
Share your January medical calendar with us so we can offer you support through the ups and downs of the new year.
-
44 Replies
-
Let’s show new member @Gailgrab how much we support and help every member here.
Gail was recently diagnosed. She had a PFT today and is scheduled for a sleep study this month. She isn’t sure what other testing her doctor has in mind.
Gail would like advice on the following:
What other tests should I expect? When should I expect to start treatment? I really appreciate your help and knowledge. Thank you.
Gail, feel fee to post more questions/concerns here if you have any.
-
Hi @Gailgrab, welcome to the PHamily! How did your PFT go? It can be exhausting when the respiratory technician tells you to blow harder, and you’re already in that booth. It’s never been a favorite of mine, but it’s also not the worst.
Are you doing your sleep study at home or in a center?
Below, I’m sharing a link to our Collections series for those newly diagnosed. It offers some beneficial information you may find helpful. But we are also here to support you through this journey as you adjust to your new normal with PH.
Have you already had an echocardiogram and right heart cath( RHC)? You may also have CT scans, chest X-rays, and blood work.
https://pulmonaryhypertensionnews.com/newly-diagnosed-with-pulmonary-hypertension/
-
-
Hi. Hope everyone had a Happy New Year! In response to Jen’s questions, I’m having my sleep study in a sleep center connected with my pulmonologist. I have not had a right heart cath, but I did have a left heart cath and an echocardiogram in August. The echocardiogram is where the diagnosis came from. Hopefully after the sleep study, I’ll get more tests and start treatment. Thanks for all the information. It really does help.
-
Hi @Gailgrab-Happy New Year!
It sounds like your new year is already active. I hope you get more information after your sleep study. Yes, then they may begin to add to the tests. It also depends on each specialist. Many have protocols and treat their patients how they’ve found worse.
Please keep us posted and let us know if you have any other questions.
-
Hi @Gailgrab, how has your testing been going this month? Did you already have the sleep study and all? What changes or symptoms have you experienced this month so far?
How can we best support you through the month? We are here and ready with open arms, my PHriend.
-
-
Hey, y’all, how hectic has your 2024 medical schedule been so far? Mine has been a tad slower. But starting with a visit to test for flu, RSV, and COVID, which all were negative, thankfully. However, my lung sounds warranted chest X-rays, which revealed bronchitis in my left lower lobe and pleurisy,
That was Friday, so my rheumatologist appointment was switched to a telehealth visit today. Although, I’m grateful that my lungs feel better as I keep taking antibiotics, our favorite, prednisone, and nebulizer breathing treatments.
Later this month, I have appointments with my therapist, psyche, and nephrologist. Labs scattered between.
How’s everyone’s medical schedule? How’s Bryan this week, @ky? @Carol Volckmann, what about your appointments this month? I know you had a few before mid-month, right? Anyone else? Please let us know so we can support you.
-
@jen-cueva I hate that you have bronchitis but relieved it isn’t flu, Covid or RSV. I felt that something was definitely going on with you. Thank God you got answers and are being treated accordingly. I know your family is going through a lot right now and I hope you are taking breaks from comforting others and instead take time to comfort yourself!
Cullen has several appointments this month and so do my parents. I’ll be attending all of them of course. But I am making time for myself too. I’m going to my cousin’s on Sunday for dinner. Books I ordered from B&N arrived today so starting tomorrow I’ll be reserving time every day to read.
Wishing you well, Jen!
-
Hi @Colleen, I don’t know how I missed this one from you; my apologies. I am feeling much better after bronchitis and almost back to my usual.
I know you have been in another whirlwind, my friend and FWW! Hopefully, some of the appointments you mentioned you’ve already attended with Cullen and your parents. I feel your books arrived, but unfortunately, you have not had time to begin any of them.
Please do let us know how we can best support you as you manage medical and non-medical struggles this month. Love, hugs, and prayers are with you, Colleen.
-
-
-
Gonna be at UCSD for 3 days 22nd to 24th. PH appointment, right heart catheter and infusion. Infusion is for cancer not PH.
-
@Roger Bliss you will certainly be on my mind and in my prayers on those days. Will they be admitting you or do you get to go home every day? How have you been doing? Do you suspect improvement/decline or about the same? I’m hoping for the best!
-
No side effects from right heart catheter. It did come out that for sure I have PAH. They were surprised as it usually only effects women…….go figure. I never do anything by the book anyway.LOL For now I am staying on tadalafil and I got a new drug Opsumit. I am curious if anyone else has had any luck with it???
Got an infusion for my immune system (cancer related) with no side effects yet. It is supposed to take 2 or 3 weeks to see any results.
-
Hi, @Roger Bliss. I’m so grateful to hear that you had no side effects or complications from your RHC. Yes, PH does tend to affect more women than men. But we do have quite a few men who are diagnosed.
Was your infusion the newer ones or the same as you’ve had before? I’m thankful you didn’t have any complications with that, too.
I’ll share a few links to a discussion about Opsumit below. I was on it years ago. I hope that, together with your tadalafil, it will be the best combo treatment for you. I know you’ve not followed a book in anything you do, right? Thanks for sharing your update, and let us know how we can best support you.
https://pulmonaryhypertensionnews.com/forums/forums/topic/experiences-with-opsumit/?no_frame=1
pulmonaryhypertensionnews.com
Do You Have Experience Taking Opsumit ( Macitentan)? - Treatments and Therapies - Pulmonary Hypertension News Forums
-
They take antibodies out of donated blood and infuse me with that. It’s supposed to boost my immune system. It’s bad due to cancer. You can get reactions to it, but I guess they aren’t bad. I didn’t have any. Supposed to get infusions once a month. Gonna get a couple more here in case I do have have a reaction then will get them in Alaska.
I don’t follow the book at all on anything. Guess it keeps the doctors on their toes.LOL
Thanks for the links!!! Always good to get more info. Started taking that on the 26th. So far so good.
I am going to start on Uptravi as soon as the paper work is done. I have been looking up the reviews on that and they aren’t that good. Do you have any info on that?
-
Hi @Roger Bliss,
I hope the IV treatment will help boost your immunity. It’s great news that you haven’t experienced any side effects.
Hehe, at keeping the doctors on their toes. That’s what they need sometimes. 😂
It’s also positive news that you haven’t experienced any issues since beginning the Opsumit. Let’s hope it continues as you keep taking it. Did you start at a lower dose and increase later? Please keep us posted. The good news is you won’t need to take the monthly pregnancy test. 😉
Here’s a link for Uptravi that I found in the forums. I’ve been on it for about seven years after it was FDA-approved. I switched from Orenitram, which my body didn’t tolerate well. That one, I suffered extreme gastrointestinal side effects. So, when I transitioned to Uptravi, I started at a low dose and titrated every week or two. My dosage is now 1600 mcg twice per day. I would say the headaches, leg pain, and nausea were the most bothersome side effects for me.
pulmonaryhypertensionnews.com
Uptravi, reactions during titration, side effects - Treatments and Therapies - Pulmonary Hypertension News Forums
-
They didn’t mention anything about increasing the dosage of Opsumit, so I don’t actually know if they will or not???
Thanks for the links for Uptravi. That is good to know. I checked it out on the web. As far as reviews goes it averaged 5 out of 10 stars. The side effects made me nervous too. Good to know the experiences people on here have had and were able to work through it. I am starting on a lower dose and working up. Right now I am still working on getting approved. I will let you know how it goes.
-
Hey, @Roger Bliss, are you taking Opsumit 10 mg once per day? Most start at that, but some start with—half of that dosage.
Yeah, everyone reacts differently to each treatment, including Uptravi. But that one is titrated slowly. If you have too many uncomfortable side effects, usually, it’s suggested to stay at that dose a little longer to allow your body time to adjust.
The team at UCSD should be helping to work with your insurance and the specialty pharmacy. That’s usually Accredo or CVS Speciality. Yes, please do keep us posted.
-
Yeah……I am on Opsumit 10 mg once per day. I didn’t hear anything about increasing it, so I don’t know if they will or not??
I haven’t started Uptravi yet, but I understand they will keep increasing it. I am getting it from Accredo. UCSD got all the paper work done. I got approved from my insurance company and a grant so it won’t cost me anything. I am just waiting for a final call from Accredo to finish setting things up.
-
Hi @Roger Bliss, no increase is needed with Opsumit 10 mg. I was referring to those who start at half a dose.
With the Uptravi, congrats on getting copay assistance. It’s wild how expensive these meds are! Yes, I think I started at 200 or 400mcg twice per day. We increased weekly or every two weeks, depending on how my body reacted. But I’m now at the max dosage of 1600 mcg. Not everyone will get to hat for their maintenance dose.
I’m confident that UCSD and Accredo will be sure you are educated before you start Uptravi. A home health nurse from Accredo came out to see me and teach us about the medication and how titration works.
Keep us posted and thaks for sharing your update, Roger!
-
Have you ever heard of Jensen Companion? Sounds like they are some type of support group. Been on the phone with them. Not sure what to think about them?????
-
Hi @Roger Bliss, yes, I’ve heard of the Compassion Program. It’s usually initiated when we begin Uptravi. It’s more of an educational support that works with you and your PH team. It’s a one-on-one contact you can ask all your questions.
After my first call, I told them I’ll consult with my PH team or Accredo with any questions.
Things to talk about would be any concerns or questiins you may have about starting Uptravi.
-
-
-
I go home every day. None of the procedures are a big deal. The infusion is new “stuff” they are putting anti bodies out of some blood donors blood in me as I don’t have many.
Got covid now, but fairly mild……on day 3 of Paxlovid.
-
Agh! I am sorry to hear you caught Covid. Will there be enough time between for them to be ok with the procedures and infusions?
-
I don’t see the covid causing any problems with my appointments. They are over a week after my last Paxlovid. Thanks for the concern though.
-
Good to hear @Roger Bliss . It’s awful to plan for appointments like that and end up having to delay them. Best to get it over with I always say.
-
Yes, that shouldn’t be an issue, then. I’m grateful you could take the Paxlovid. Did you take it each time you had COVID, @Roger Bliss?
I hope your week is going well!
-
-
-
Colleen so glad to hear you are going to take some time for yourself. Certainly a very busy January and into February you will have with Cullen and your parents. Wishing you all positive outcomes.
Jen so glad to hear you do not have the flu, covid or RSV. Please go easy on yourself and you know I am also sending you warm wishes and hugs.
For me – we were supposed to be on the road heading your way Jen but last minute decided we needed to stay here. Good thing as I ended up in the ER/hospital where they are trying to find out why I am bleeding into my abdomen and the local hospital anesthesiologist is uncomfortable with surgery here for me so they are going to transport me to UW probably tomorrow morning – it is a mad house at UW and I am not looking forward to that! But, it will be what it will be. At least my Pulmonologist and Cardiologist are there.
Wishing everyone a good 2024 – stay well stay safe!
-
@Carol Volckmann what on earth! Are you in any pain or discomfort? Please keep us updated. We will be worried about you. Keeping those UW docs in my prayers too as they seek answers and a treatment plan for you.
-
-
Wow, what a year already! I spoke with @Carol Volckmann a few minutes ago in the hospital with abdominal bleeding. She received a few units of blood and was feeling better. However, the smaller hospital is concerned about surgery(anesthesia) with her with PH.
Unfortunately, they are in the middle of a storm in WA, and the roads are unsafe to transfer to UW Hospital. So, as she says, “I’m not going anywhere”. Of course, Carol was in good spirits. Her positive mindset is what helps her through these struggles.
Help me send our sweet PHriend, Carol, extra love, hugs, positive thoughts, and prayers. I’ll be happy to update you as she shares with me. We love you, Carol, and are here to support you. 🥰
-
Thank you for the update @jen-cueva . I forgot about the snow WA received yesterday. I hope whether she stays or is transferred she receives the best care she deserves!
Thinking about you @Carol Volckmann I’m so sorry you are going through this.
-
-
Thank you sweet Jen, I can feel your support, prayers and love ❤️. Right now I am in limbo but hopefully will have an action plan by tomorrow morning. Thank you again 😊 I am ever so greatful to have found this forum, you really do lift my spirits!
And … a big thank you Colleen for your support as well. Yes, it was a real mess here, snow, high winds, temp in the teens and roads sheer ice!
I started this post while in the hospital – came home Friday after 2 units of blood brought my levels up. It is now Monday and had more labs, levels still stable. Doc who treated me in the ER and hospital, my PCP doc and myself will be calling u he surgery center to, hopefully 🙏, get an appointment for ENG to see where the bleeding is and fix it, hopefully.
It is good to he home! Thank you again 😊 Colleen and Jen – you both are so very special. Love ❤️ and lots of warm hugs 🤗. Love you both ❤️
-
Thanks for the update, @Carol Volckmann. I’m so happy you are at home and hopefully resting. I bet Dick and Cloud are taking wonderful care of you.
Please keep us posted on when they schedule your EGD, etc. I’m keeping you in my thoughts and prayers, sweet PHriend. 🤗
-
Hi, @Carol Volckmann. Have they scheduled your EGD yet? How are you doing since returning home after the bleeding issue? I’m crossing all I can and praying that you are staying stable after the units of blood last week.
-
-
-
We are halfway through the first full month of 2024! How is everyone doing? Do you have any medical or life updates to share? Could you use a little extra support?
How are y’all doing, @Tracey , @Aunt Lizzie , @Dawn , @Sally Hoffman , @Terese Tuohey , and @Vanessa Vaile ? Drop us an update if and when you are feeling up to it.
-
Haven’t posted for a bit, so hope everyone’s New Year has started off well. I don’t know how I got so lucky, but I only had 2 appts this month, earlier my annual eye exam and this week a PFT and labs. I pray I can finish the month without anything else! I know March and April are already full. I wish everyone the best with their appts.
-
WooHoo! What an excellent way to creep into the new year, @DeLois Tweedy! I hope and pray this month will stay calm for you regarding appointments. What are you doing in that extra free time since you aren’t at medical appointments?
Thanks for checking in and sharing your updates with us. Enjoy those lt few weeks of the month, my PHriend!🤗
-
-
@Colleen and @jen-cueva Thank you both so much for your loving support. To update – had my endoscopy yesterday at UW. We both liked the doctor very much. Results show no bleed but did not find an answer as to why. I will be seeing a new gastroenterologist Feb 8th. She has put in orders for ultrasounds and has all my info and … we don’t have to go into Seattle! Blood levels still on low side but stable. I am feeling better and plan on staying that way 😊.
Colleen I really hope all is better for you, your mom, dad and Cullen. Jen, I hope you too are feeling better. I absolutely cried reading your birthday letter to Manny, beautifully said. I felt Dick’s love and support as I read it and want to show it to him tonight. 🤗❤️
-
Hi, @Carol Volckmann; thanks for sharing your update on your EGD. I’m thrilled to know you don’t have any active bleeding. But yes, we all want to know why you had the bleeding that landed you in the ER a few weeks ago.
I hope you will get more information from the gastroenterologist next month. I like that she is already proactive in ordering an ultrasound. Such positive news is that your labs are stable, although on the lower end. I’m confident you’ll see those improve a bit more with time.
This morning, I am feeling pretty good. I am staying in my comfy PJs in this nasty wet weather. You know you’ve lived in San Diego long enough when you think this wet day means staying indoors. It was such a common occurrence that we learned to deal with it in Houston. As KK says, we don’t pay that sunshine tax for no reason. Bring on the sunshine!🌞
Thanks for the update, Carol. Please keep us updated as you see your new gastroenterologist on 2/8. Let us know how we can best support you as you regain strength and wait for this visit.
-
-
Hi @Colleen, how are things for you this week? I hope and pray things in WA are falling into place after the busted pipes. Are you back at your house now? I am so grateful for your amazing, supportive friend, Janet. I can feel her love for you and your family; it warms my heart. 😍
Please try and take care of yourself. I’ve been worried about you, my FWW, and my friend. Extra love, hugs, and prayers are with you. Please LMK how I can best support you. 🤗
-
Hey, y’all, I wanted to share an update from our lovely PHriend, @ky. I’m sorry to hear about Bryan’s hospitalization. Unfortunately, his insurance didn’t approve the pump he needed, and he had to be admitted to the ICU. I can only imagine how stressful this must be for you both, Ky.
But Ky has been doing a fantastic job of keeping me up-to-date on his progress. It’s never easy to be in a situation like this, but knowing that Bryan is in good hands is comforting.
I’m so glad that Bryan is motivated to improve and is everyone’s favorite patient. As per Ky, his team says, “he’s setting records” and doing well under the circumstances. I can only imagine how tough it must be for him not to be able to try the new treatment, sotaracept, he wanted. But instead, it was started on a pump. He was totally off Uptravi yesterday as they continue to titrate the Remodulin. 💪💪
Please join me as we send extra positive thoughts, love, prayers, and light to be with Bryan and Ky as they work together to rally through the ICU. They are doing a fantastic job as they tag team each new obstacle. We are here cheering y’all on, sweet PHriends. 🤗🌞😍
-
@ky My prayers 🙏 and positive vibes reach out to you and Byran. For me the hardest issue with Remodulin and using the pump was all the new steps you need to learn in managing the changes. It seemed totally daunting and scary the first few weeks.
Both my husband and myself do all the changes ourselves so we both became very comfortable. I do make sure when I oder supplies. I order extras of everything I the event supplies are delayed or the may be a defect. A couple of times I had to go into the hospital which I was not ready for. Today when away from home I carry a bag with extra meds in their own container and extra supplies for changes.
Bryan, are you on a subQ pump or IV? One item you can have your special pharmacy include are AquaCel Foam to put over your site – totally waterproof. They really make a big difference.
There different tricks for either subQ or IV would be glad to pass along as I started with subQ but have been on Rheumatologist IV for several years
Wishing you get out of the hospital soon and getting HOME! 😊❤️
-
Hi, @Carol Volckmann. I am confident that Ky and Bryan will especially appreciate your insights and experience with trial and error with Remodulin. I do believe Bryan is on IV.
But, to a shocking surprise, Ky and Bryan got to go home last night from the hospital!!! He was certainly breaking some records and was a total rockstar! I can only imagine how busy they will be once at home and having the nurse visits etc, to get everything all set up to kick butt!
Thanks to @ky .or for sharing that amazing update with me last night! I was blown away by how fast he moved with this transition. We wish you and Bryan the best as you begin this new Remodulin adventure. 🕺
-
Here’s a Monday update from @ky. Unfortunately, on Saturday, she had to drag Bryan to the ER because his site had swelling and increased pain. He had a clot!
Thankfully, they are back at home, but swelling and pain continue, and poor KY feels helpless. However, she is far from that! But many of us relate.
They continue to increase Bryan’s Remodulin and were signed off with home health. So, we are sending them all the extra positive thoughts, prayers, and light as they fly solo. We are always here cheering y’all on, Ky!
-
-
-
@ky I just read the prior post @jen posted. I cannot believe they are increasing Remodulin without monitoring you more closely and the doctor is unavailable till Tuesday.
Another resource you do have is from the special pharmacy you are receiving your supplies from. I would call them asking to speak to a nurse to help you through this and the pain you are in.
The special pharmacy I received my supplies from is Accredo/ Express Pharmacy. They are above and beyond helpful 24 hours a day every day. I hope and pray you get some help. Don’t stop trying.
-
Hey there, @Carol Volckmann; I never considered calling Accredo or their specialty pharmacy. But I did suggest she ask her home health nurse, who often is from Accredo. But, with your suggestions and Ky’s resilience, they, too, will get through this!
@ky , extra love, hugs, and prayers are wih you and Bryan. Please let us know how things are for y’all after the weekend. 🤗
-
Log in to reply.