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How has your health been this week? Could you describe it in three words?
Whether increased PH symptoms, painful flares, or tough emotional times – we’re here for you!
How are your mind, body, and heart doing today? Let’s take a moment to check in and see where we’re at this week!
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41 Replies
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@jenc as a whole I’m doing fairly well but dealing with a cornucopia of emotions (not all bad).
Top 3 words:
Grateful / Overwhelmed / Heartbroken
How about you Jen, what are your top 3 words?
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Hi @colleensteele, I am sure you had such a rollercoaster of emotions daily. But I’m grateful that despite your heartbreak and being overwhelmed, you can still find things to be grateful about. My heart and love are with you, my dear friend. <3
This week, I would say, I'm overwhelmed and exhausted but thankful. I'm about to head to my last appointment this week, my dreaded well-woman exam. Thanks for asking.
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Checking-in to see if you are doing better this week @jenc. Have you gotten back any results you would like to discuss?
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I am waiting for the doctor to review my most recent tests. I’m hoping that will be next week. I already see my nephrologist over in that area next week.
Thanks for checking, @colleensteele. How is your week going?
You cracked me up by saying you wouldn’t dare tell your mom she looks older than your dad. Wise daughter, hehe.
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@jenc praying for good results you are hoping for and/or answers to symtops with a with a hopeful plan to treat!
We have been sick all week. I think it’s just a bad cold but because it has included a cough and fever Cullen’s transplant team asked him to get a full respiratory viral panel and a COVID PCR test.
Did you know most PCP offices and urgent cares don’t offer the full respiratory panel? We had to go to the ER. Sat there for 3 hours, got the swabs done in the little cubby by waiting where they do vitals before you get a room. Thought we could leave but the doctor read heart/lung transplant and said, nope, for liability reasons he had to be seen before released.
Doc looked over his paperwork, said vitals look good, you can go home and wait for results. Well thank you for that unnecessary medical bill!
So far negative for Covid. Waiting on other results.
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Hey @colleensteele, I’m grateful that Cullen tested negative for COVID. However, hate that you all have been sick. I know you have so many things you are working on. Please let us know how we can help you through this difficult time.
That’s so ridiculous that you had to drive to the ER and wait 3 hours to be seen for a few minutes! I asked a good friend who is a lab manager in Illinois, and she said they rarely do respiratory panels, and it costs over $100 for a swab. She said a PCP or ER doctor could order it, but an Urgent Care doctor couldn’t-there in Illinois. So strange to me; thank you for sharing; I had no clue!
I’m waiting again since the doctor who ordered my tests is unavailable until later in July. I messaged him to see what we could do in the meantime. Now, I won’t hear back from him probably until Monday. Thanks for your concern and support.
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@jenc I also had no clue! It amazes me that there are still basic things left for me to learn about the medical field!
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Yes, so true, @colleensteele! I always say I never know enough as we learn more daily from each other in the forums.
Take care, and be safe on your way to Seattle this morning.
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Because I mentioned feeling overwhelmed, I wanted to share a link to my column about feeling overwhelmed at times. Give it a read, and let me know your thoughts.
Overwhelmed with managing PH? You’re not alone.
Can you relate? What stood out to you the most?
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Normally I am not at all pessimistic. But I am really am honest, so here goes:
Mind – grateful but sad
Body – crappy
Heart – struggling
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Hi @deetweedy, I, too, try to look at the positive side of things. But lately, I’ve found myself drained and overwhelmed. But some days, we must be real and allow ourselves to feel the negatives, too.
With your increased breathing issues, you probably will find relief once they get you some additional treatments. How can we best support you as you deal with your “crappy” body and struggling heart? We all have those days, so let’s hear it!
Big hugs and extra prayers that you get relief soon.
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@deetweedy don’t confuse pessimistic and realistic. The fact is your body is not well and it’s taking a toll on you but that’s not saying you aren’t optimistic. The fact that you still find things to be grateful for that is optimism shining through.
Please remember whenever you are having a rough day we will be here for you!
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Hi @deetweedy, how are you doing this Friday? I know you had some struggles this last week. Any updates you want to share with us? How can we best support you?
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Up and down. It seems every week is a rollercoaster. My MIL has been visiting (2 1/2 weeks) and even though she is 91, she can run circles around me. She is the youngest 91 year old I have ever met, but when you think about it I don’t know a lot of 91 year olds. She looks in her 70s. Any way, I have been exhausted by the end of the day – physically exhausted. My husband and she went to Charleston where she will stay with his brother for a week and a half before returning home. I opted to stay home so I could rest. They left Wednesday afternoon. Yesterday I did nothing. I did get a little bored doing nothing, but my body feels better. Today I’m only going to do half nothing! By Saturday I should feel like going out to lunch with my daughter and maybe shopping. I believe my three words will always be “up and down” whether it’s mind, body or heart.
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Hi @debbie, wow, your MNL is 91! That’s incredible; how old was your late FNL?
But I can see how she is wearing you down. She sounds like a boost of energy. I wish I had some of that; maybe she will share it with us. But I can relate and love that your three words are up and down; that is perfect!
I’m sorry you missed the Charleston trip. Proud of you for taking that time to rest and listen to your body! It sounds like rest yesterday helped. Now, can you share what your “doing half nothing” means? This doesn’t sound as convincing from you, hehe.
But lunch and shopping a little tomorrow with your daughter sounds like a great plan! Enjoy!
Will your hubby be home for Father’s Day? Happy Father’s Day to him!
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@jenc my FIL was 88 when he passed.
Half nothing is when what you do something productive, but not physical with rest for most of the day. I did computer work (updating QuickBooks) for several hours and then laid in the recliner for the rest of the day.
My daughter and I crocheted then went out to lunch, so no shopping. Both of us were still in the rest needed phase. Still always fabulous to spend time with her no matter what we do. You understand that I’m sure!
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Hi @debbie, It’s wonderful that 88 was also achieved; that’s truly a blessing! Your in-laws must have accumulated a wealth of life experience at that age. It seems as though your MIL is still pursuing adventures with great energy!
It’s not about physical labor but exercising your mind. Everyone has their interpretation of “half nothing.” For myself, it could be watching TV, taking naps, or simply relaxing and tidying up whenever possible.
I’m grateful you enjoyed recharging with your daughter. I like being home with my daughter for some chill time. What’d you have for lunch? Have you got any fave lunch spots? There are certain places I go with my daughter and others with Manny.
I never learned to crochet, but my mom can do most creative hobbies.
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Well @jenc we ate Mexican. I love it. Sometimes it’s Asian – Chinese, Japanese, Thai or Vietnamese. When it comes to down home cooking I like to eat at home. The only food I’ve really not acquired a taste for is German food. I can always pass on it. There are only so many places to eat in my little town so the kids, grandgirls or Wayne any of us will eat at any of them!
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Yummy, @debbie, you can’t go wrong with Mexican food. Heck, most any food, in my book.
I like brats and homemade kraut, but that’s probably all the German food I know.
It’s easy to try them all in a smaller town, right? I know the small country town my late Mawmaw’s home is at, they probably only have 1-2 places I’ve never eaten, but that’s because they are new. Sadly, the small cafes and diners I enjoyed as a kid are no longer in business.
I prefer mom-and-pop places when I can. However, the chains are quick when on the go.
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@debbie doing nothing can feel boring but having something to look forward to, like going to lunch with your daughter, makes time spent refueling worth it!
Your MIL sounds like my dad. He will be 93 in August but doesn’t look or act like it! To be honest, my mom just turned 85 and she looks older…but I would NEVER tell her that! My dad still mows the lawn, grocery shops, fiddles around in is garage fixing things. He amazes me!
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Wow 93! @colleensteele my family does not have that longevity. My MIL is very active, always on the go. I feel like I’m keeping up with a toddler when I take her out. One minute I know where she is the next minute she is gone. Eventually I find her after I walk the store back and forth. But I do love her and will put up with any of her antics. Her aging is noticeable in her forgetfulness. That didn’t start until my FIL passed away (April). I love her stories about her growing up. They are priceless.
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Hi @debbie, I hope you had a few destressing days and feel more like yourself. How are things this Friday?
Do you have any travels coming up this summer?
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Reading your comment about the old stories reminds me so much of my late grandparents and in-laws. Those stories are so of my precious memories to hold onto. Thank you for sharing about your MIL; it made me smile, my face, and my heart!Enjoy a replacing weekend. Your hubby is home now, right?
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Much better now. 😌 I have really struggled with water around my heart. Increased my diuretic and I literally dropped 12 pounds in 36 hours. Dr. Sood from UC Davis is amazing. My pressures are real high so they’re talking putting me on the pump. Any info on that would be greatly appreciated
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@jecaraway62 do you know which IV medication your doctor wants to put you on? @jenc gave you good links to view about pump treatment.
In addition to Remodulin, Flolan is an option too but I think one that isn’t used as often anymore. But life with a pump is similiar whether it’s Remodulin or Flolan.
Here is a link to a column I wrote about my son’s Flolan.
Why We Decided to Go With the Flo: Our Experience With Flolan for PH
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Hi @jecaraway62, what a wonderful update! That is a lot of extra fluid in 36 hours! You must feel lighter and breathing easier now.
I’ve heard great things about UC Davis, so happy you have an excellent PH team. But I’m sorry that you continue to have high pressure. I’ll share below a link to topics about Remodulin, which I’m assuming you are referring to.
Hopefully, these will help, and I know others here have experience with the pump. Also, the new treatment should be approved next year; it’s an injection every 3 weeks. I’ll share a link for that, too.
Can Sotatercept Help Improve Exercise Ability?helpThanks for sharing an update. Please keep us posted and let us know how we can best support you.
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Thank you
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Hopefully, the links Colleen and I shared will offer you some information. @jecaraway62. Yes, I always forget about Flolan, but years ago, that was the only approved treatment for PH. Thanks, @colleensteele, for sharing your experience with Flolan.
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Overwhelmed, questioning, determined… In Psalm 88 David indicates that he feels ‘overcome by all your waves’ (ESV) David had a good heart, one would not suspect that PAH existed in those days simply because life expectancy was so short. But throughout the Psalms there is questioning but there is also determination. I am a controller but it wasn’t until I got older that my body began to react negatively to my forcing it to stay healthy. But managaing my PAH keeps me in that mode of controlling. I’ve been taught to do that since I first entered the AF Academy 64 years ago. I am determined to make a full life of it. This week has been particularly challenging. I changed my infusion site for my subcutanious pumping of Remodulin. I know what to expect, an increase in pain at the new site followed by a period where it begins to disappear. Only this time it triggered off aches and some short instances of vertigo. I have no idea why but through keeping up with my usual routines those symptoms are gone. I’m praying that this reaction won’t repeat. (Note to John above – I have CTEPH and this pump is a life saver.)
So the past few days my health was crappy but at least my Pallative care doctor had an appointment to see me right after this and suggested that my age (ug!) had something to do with it.
Ya’ll hang in there
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Excellent points, @ripple76. I know at times, we all feel those emotions. But s long as we are determined, we continue to push through. We all look to hold on to something stronger when we meet these difficult times; I know you have a strong faith, as do many others, which helps us along the way.
I’m sorry you’ve had some challenging symptoms, which were uncommon for you after a site change. I’m grateful your palliative care doctor quickly checked you out.
Age-humph, it’s only a number, right?
Take care, my PHriend, and know we are here for your support. We appreciate your update.
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@ripple76 I’ve been wondering how you are doing so it’s nice to hear an update.
Cullen never used subcutanious pumping of Remodulin so I don’t know what similarities there are. I just know that when Cullen experienced side-effects like dizziness and headaches, they would lower his Flolan dose and increase at a slower rate. If the vertigo returns I wonder if that is an option to try…slow increase?
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Hi @colleensteele, that is also what we did when titrating oral medications—great suggestion if that’s an option for @ripple76 if he experiences vertigo again.
We missed your incredible mind, too. You always think of things I miss. That’s why we are an excellent team.
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Hi Jen. Thanks for checking on me. I have not had a good 2 weeks, though I do feel a little better today. At least the sun is trying to shine after a solid week of rain.
I am frustrated with my local pulmonary office and the hospital here. After a week of increased lasix, they were supposed to call me and put an order through to get the sleep study done at the hospital. After a week I had heard nothing, so I made a nuisance of myself by calling and leaving messages. I finally got a return call from the PA yesterday to “check on me”. He said he was putting through the order to the hosp right then. It’s mid-afternoon Friday and they still haven’t called to set up the study. You would think since it’s a study to see if I need supplemental oxygen at night, they would feel it was important to set it up quickly.
I am thinking I will give them til Monday, then call my team again at UVA hospital. They are further from home, but worth every extra minute it takes to get there.
I don’t know why all this has to be so hard and complicated. It sure is frustrating. I have been struggling with shortness of breath, balance issues, some lightheadedness at times, no appetite, total weakness/fatigue, and most mornings with my cardiac cough and/or wheezing.
I guess like everyone on this site, we are PH warriors and will fight on. But at times you get so exhausted.
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@deetweedy I am so worried about you! You don’t sound well and definitely need that supplemental oxygen ASAP. I’m sorry for forgetting…when was your last right heart cath?
No, you shouldn’t have to fight this hard for proper care. I’m sorry you are going through this. Give them to Monday and if they are still letting you down then I like your plan to reach out to the other place.
I hope you manage to have a restful weekend.
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Hi @deetweedy, it sounds like you think you are feeling better. But your increased symptoms tell me not.
Hopefully, you heard from the hospital to set up the sleep study. If the other team is worth that drive, go with them and know you’ll be in excellent care.
Yes, it’s exhausting when you are already not feeling your best and trying to be proactive. You shouldn’t have to fight for care. I’m sorry, my dear PHriend; I know how frustrating and draining this is on our bodies.
Please do keep us posted. Maybe at the other place, they will admit you for a few days or at least overnight to have the sleep study and any other routine tests, like Echo and RHC.
We are here and waiting for your update. Extra love, hugs, and prayers are with you, sweet PHriend.
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Thank you Colleen for your concern and well wishes. I aim to follow through with my plan for Monday. My family as well thinks more concern and help is found at UVA. I credit them with saving my life in 2020 when I was airlifted there from the local hospital with acute respiratory failure, etc, etc. Of course the local hospital had knicked my liver during procedure to remove pericardial effusion. I went into hemmoraghic shock and it took them many hours to find what was wrong. I wasn’t aware of anything. But it did put my family through coming to see me “for the last time.” Needless to say, I have some negative feelings about this hospital, but I have continued to try to work with them. Maybe that’s a mistake on my part.
My last R heart cath was December 16, 2022 at the larger hospital. I have an echo and follow-up with the advanced valve department/my cardiologist every six months at the larger hospital.
No, this should not be so difficult, but it is helping me really see the different levels of concern for patients in comparing these 2 hospitals.
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Thinking of you @deetweedy and hoping all goes well with your plans today. You are very fortunate to have another facility to turn to and trust. Trust makes all the difference in the world!
When you have the chance and feel up to I hope to read an update from you this week. Reach out to the forums if you need advice or just to vent during this process.
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Grueling
doeable
challenging
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Hi @jimi, this sounds like one heck of a week! Do you want to share anything else so we can offer you support?
I hate to hear that things are so grueling. But love, as always, you add doable to the list! What’s going on besides the heat this week?
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I am being pulled in 10 directions at the same time. Add PH (PAH) dialysis ,congestive heart failure and rejection for a kidney transplant, primarily due to being over 70, when my age was 70 before almost a year of testing, CT Scans, xrays, blood draws, etc. Did nothing for my PTSD. Now trying to verify another transplant centers requirement before dealing with the insurance companies approval process and explaining what happened to potential living donors.
Thanks for your support, it is great to know that someone cares, especially when all of you are facing daily challenges with PH and all its side effects. I am still focused on my goals, just watching on a different approach. Everyone, no matter the age, race or beliefs, have a contribution to make to our world. Having someone to talk to and listen is really critical. Please keep up the work you do.
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Hi @jimi, my heart aches for you as I know managing multiple chronic conditions is overwhelming and exhausting! It does feel like we are pulled in 100 directions some days.
I’m sorry you were rejected for a kidney transplant because you were over 70. After enduring those tests, you must feel defeated. But I’m grateful you are pushing ahead and checking with other transplant centers. Once you find one that you think will benefit you, hopefully your case manager can help with the enormous amount of work needed from insurance.
I can see when you said, “unchallengeable but doable.” Don’t stop being your best advocate, my PHriend. We are happy to support you and listen when you need extra love and care. My thoughts and prayers are with you, Jimi.
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@jimi grueling, challenging but doable? You have me concerned. Can we support you through any of it?
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