June 18, 2022 at 1:04 pm #34780
Hey, folks. I just discovered this group within the forum. It’s no doubt going to be a very useful one for me!
I’m going to be in Boston in early October at The Brig (ahem!) or its satellite for an invasive cardiopulmonary exercise test.
Anyone with PH live in that area (technically, Newton, MA) who might be interested in meeting up for a coffee and a chat?
I plan to come a day earlier than absolutely necessary (to try to make sure flight snafus don’t prevent me from getting to the hospital on time) and stay a day later than absolutely necessary because I’m pretty sure I’m not going to feel great for the following 24 hours and won’t be up to traveling. And also because I’ll be going off Eliquis for this test, and would like to have 24 hours to get it back into my system a bit before flying out.
So I will have some time to kill. If anyone is local and cares to/is able to have a cuppa with a stranger?
Brenda from NC
June 20, 2022 at 10:01 pm #34786
June 22, 2022 at 6:52 am #34789Debbie MooreParticipant
Hi brendad53! I won’t be in Boston, but I was wondering where are you from in NC? I live in Mount Airy.
June 22, 2022 at 9:44 am #34796
I’m in Pittsboro, about 30 miles west of Raleigh. I’m coming up your way in a couple of weeks because I want to see if the altitude once again sends me over the respiratory edge! Had a bad, BAD experience at Blowing Rock last fall, but felt somewhat better when I came down to a lower elevation again. I’m wondering if that will happen this time.
You know, if you ever want to play around with elevation and how you feel, I’d love to have you visit the Piedmont.
June 22, 2022 at 2:40 pm #34801
Hi @brendad53, I would love a cuppa joe with you in Boston. More importantly, a lobsta’ roll and cup of chowdah’ sounds better. I miss traveling there when Dr.Channick was at MGH in Boston.
Brenda, please be careful traveling and see how your body does with the higher elevations. I’m a bit worried since you don’t have oxygen available and had a difficult time before. Please listen to your body.
But hopefully, some members in the Boston area will be available to meet up with you.
June 22, 2022 at 4:04 pm #34807
I’m a little anxious about flying to Boston, Jen, because of what happened in Blowing Rock last fall. So I figured this little trip up to the mountains in a couple of weeks will be a good test. And I *am* taking a friend with me (not just my puppy!), so that if I wind up incapacitated, someone else can drive us down to more breathe-able elevations!
But seriously….Blowing Rock is just 3,000 feet higher than my house. Not that extreme. And, after all, airplane cabins are pressurized, so….
June 23, 2022 at 4:51 pm #34831
@brendad53, have you asked Dr. Ford to run a high altitude test to see if you need oxygen on the plane? I don’t remember the exact name of the test. Hopefully, someone here will know.
June 23, 2022 at 5:25 pm #34832
V.R., after I go to the mountains with a friend and see how I do there, I might approach him about it. I didn’t even know that such a test existed!
June 24, 2022 at 1:13 pm #34841
@brendad53, Some PH patients who don’t normally need oxygen will need it while on the plane. Some airlines have oxygen on the plane, but many don’t. If Dr. Ford determines you need oxygen while flying, be sure to check TSA’s website for guidelines. Admittedly, last time I looked, it was a few years ago so the rules might be different. Back then tanks weren’t allowed, but portable oxygen concentrators were. Most airlines required a person with oxygen to have enough batteries to last twice as long as flight(s), plus layover time. My son rented a portable O2 concentrator when he drove from Utah to CA. The smaller size was a lot more convenient than his large concentrator.
@jenc, thanks for clarifying the name of the test.
- This reply was modified 1 week ago by V.R. Peterson.
June 24, 2022 at 7:36 pm #34855
If my trip to the mountains produces the same results as last time, then I will most definitely ask for something for when I fly.
June 24, 2022 at 11:47 am #34839
Hi @brendad53 and @mamabear007, this test is called a High Altitude Simulation Test or HAST. I think this would be a great idea if Dr. Ford would get this done for you before your flight to Boston. That way you both will feel a little less anxious about the flight.
Here’s more on this HAST test. It’s not uncommon for many with lung disease.
June 23, 2022 at 12:15 pm #34815
Hi @brendad53, did the doctor referring you to Boston think you could fly there without the use of oxygen? I am sure your nerves are in high gear about this flight after your experience last year in the higher elevations.
I’m happy that you’re not traveling alone. But still, I worry. 3000 feet higher than your usual elevation may not sound like much. But I don’t tolerate elevation well. I feel it quicker than some. Hopefully, you’ll do OK. Please let us know when you are planning to go so we can send you positive thoughts and prayers.
Yes, the airplane cabins are pressurized. Some with PH require oxygen while flying. Others do fine. That’s why most have a test done before flying by their PH team to see if it is needed. Other PH doctors order it to have it for the flight and travel. It’s complicated without a true diagnosis, where you are, and your requirements. Hopefully, after this trip in October, you’ll know much more. I know you’ve been waiting far too long to find some answers.
How are things daily been for you?
June 23, 2022 at 3:43 pm #34828
@Jen, yes, I am a little anxious about flying. But of course no supplemental oxygen will be ordered for me when I’m not medically validated as needing it. However, the trip to the mountains may help shape that determination. And I assume that airplanes have supplemental oxygen, should a “new” thing emerge for me once I’m aboard and we’re airborne–namely, that I have trouble on planes. Never have yet, but I seem to be in a period of flux with symptoms, so who knows?
As for daily…in some ways I’m doing better. I’m up and more active than I have been, thanks to my puppy. She impels me to get up and be more active, because she hates it when I just sit around. So I get up to play with her, for a time I was cleaning up a lot of potty accidents, I take her for walks…and if nothing else, she seems happiest when I’m up and “doing.” So those little chores that I kept not doing because I didn’t feel like it, are slowly getting done. Because it makes the puppy happy because I’m up and active and not just sitting, being boring in a chair! So in that sense she’s definitely good for me.
On the other hand, my heart rate went into the 140s today while I was walking into, around, and then out of Whole Foods for about 15 minutes. When I sat down in my car, I had to stop for a minute or so and breathe and try to get my heart to settle down. Right after my cancer treatments ended in 2010, I had to walk briskly on a treadmill for 10-15 minutes to get my heart rate up to the target of 120. Nowadays all I have to do is get up out of my rocking chair! And if I move around, it goes even higher.
I find that I’m doing more of the “did I just forget to breathe” thing. You know, where all of a sudden you’re taking a few deep breaths because it feels like you’ve exhaled and forgotten to inhale for a minute or so, and all of a sudden you realize you need to breathe. I used to do that once in a while, but I’m noticing it happening more often the last few weeks.
I’m getting help with keeping my lawn mowed, thanks to MamaBear. That helps.
So, not too bad. But waiting.
What are your typical days like? How productive are you able to be? Do you have to re-adjust your plans very often because you wake up and realize it’s not going to be a good day? How does your family react to your limitations? That’s an area where I’m having some minor issues. How do I make my family understand my limitations, without making a big deal out of it or allowing them to make too small a deal out of it? How have you handled it?
June 24, 2022 at 11:59 am #34840
Hi @brendad53, OMG, I bet that adorable little puppy runs you ragged. I can’t imagine. But good it has you moving. Although I know some days are days when you rather not move or can’t move as much.
Yes, I have those days when I know it’s a no-go kind of day. It’s more after I’ve been overdoing the days prior. But sometimes, it comes out of nowhere.
You’re an example of elevated heart rate just getting out of your rockeries relatable. I often find my heart rate over 120 while washing a few dishes. It’s not quite as often as before treatments, but it still happens.
My daughter( when she lived at home) and hubby understands more because they have lived with me and PH for years. My extended family, 17 years later, still does not all get it. I have learned to share only enough info to keep them in the loop if they ask because they will never get it!
Unfortunately, unless they have been through it themselves or watched you go through it day in and day out, they can’t and may never understand. Others have supportive loved ones who want to learn all they can. It depends on the person and has nothing to do with you. I started trying to educate my extended family, primarily my siblings, early on, and after a while, I gave up using my energy wasn’t helping. It hurts, but it is what it is, and I’ve accepted that so I can move on. It is so dependent on each person. I hope this somewhat helps answer your questions.
June 24, 2022 at 7:34 pm #34854
Adorable little puppy went in early this morning to be spayed. I figured I’d get some things done around the house while I waited to go pick her up later. Instead, I sat down in my rocker and tried to sleep for a bit. I had absolutely no “get up and go.” So I know that under her influence, I’m pushing myself.
I find that I have to schedule one or two “do not leave the house” days after I’ve had a day or two or more filled with going and doing. I can’t handle go, go, go.
I’m generally tachycardia whenever I get up and do anything. I have an allergy to mammal meat (and mammalian products) that necessitates I carry epi pens in case I get anaphylactic. I can’t imagine USING one of those pens. The epinephrine will only make my heart beat even faster, and it’s already fast when I’m up and moving around. I dread what the epi pens could do! But on the other hand, that “not able to breathe” thing is not very good, either!
OK. I understand giving up trying to educate your family, especially the part of your family that just doesn’t want to get it. However, how do you handle the ignorant comments you get? You say, “Afraid I can’t do that today. I’ve overdone it and need to take it easy.” And someone says, “That’s your problem. You give in too easily. You’re just deconditioned, now, and you need to quit taking it easy and start pushing yourself to do more.”
I mean, I can see that coming in a heartbeat.
June 27, 2022 at 11:26 am #34870
Aww, how is your little puppy post-op? Were you able to catch up on some rest while she was away? I imagine she does run you more than you think.
Like you, I can’t handle the go-go lifestyle that I would prefer. But that’s why I try and space out my plans. Our bodies usually let us know, as yours did.
Regarding those comments, I have had some rude remarks like I blame my PH on being tired, etc., or “I know, right, I’m so tired, too.” At first, I let these comments slide when it was from those who I had already tried to educate about PH. But at times, I became angry and cried and maybe screamed. But now, I feel like I don’t have to prove I’m sick to anyone. They may never understand. I try to limit my conversations with those who tend to make those snide remarks, especially on days I feel like crap. Or else, I may give them a little more than they asked for. It’s not worth my energy or time.
It’s frustrating, but I would tell them that’s their opinion or keep my comments to myself. Or I would get angry and say sure, I’m deconditioned, but you’re an idiot! I’m sorry, but that’s happened on a few occasions. Then I was told they later asked, “what’s wrong with Jen? She must be having a bad day” Really! You’re not alone, @brendad53, and I’m so sorry you’re getting such incentive comments from those around you. – Big hugs.
June 27, 2022 at 12:18 pm #34871
Ever have one of those days/several days when everything suddenly wants to happen all at the same time, and when “ends” that you thought you’d put a knot in so they wouldn’t unravel wind up unraveling anyway and creating even MORE work for you while everything else is insisting on happening all at once? Thus adding to the frenzy of “you MUST take care of this” that is hitting you from every direction? And you have to manage your energy and have precious little reserve energy for dealing with the “all at once” much less the “unraveling” stuff? And then you kinda break down into a screaming, crying, crazy-woman heap of rage?
That’s what it’s been like with my post-op pup. The tree people came and took down the dead tree while I was picking up Maggie from the vet after her operation. Because I wasn’t here, I wasn’t able to get them to clean up the debris the way I needed to have done, so I’m going to have to figure out how to do it myself. Think not just time, but, as I know everyone here does, in terms of energy expenditure as well.
Meanwhile, Maggie spent the first day post-op being in pain, despite the pain med injections the vet says she gave her, so I spent a lot of my time on Friday afternoon and evening lying next to her and comforting her. I’d just drop into a light snooze, and she’d whimper and moan again, so I’d reach out to pet her and comfort her.
A day and a half after her surgery (Saturday evening) she was on leash and decided to chase a squirrel. In the process, she almost pulled me down six stair steps and onto concrete. I grabbed the stair railing to keep from falling further, and she then pulled me HARD into the railing, giving me a really uncomfortable lower abdominal impact and a mild concussion. (The force was powerful enough as she ran out the leash between me and her that she broke off the metal pole that my bird feeders were mounted on.)
I got checked out at the ER on Sunday morning (I’m fine) and got home to find that she had been scratching at stitches on her head (to remove some bumps growing there), causing the wound to begin to open up. The vet had refused to give me a cone for her when I picked her up, telling me that it wasn’t necessary. The vet was wrong!
Then I spilled the kitty kibble while trying to feed the critters. I had no energy to clean it up. Just left it on the floor.
I tried to jury-rig a cone for Maggie, but only succeeded in spending energy I didn’t have trying to make it work.
We went for leisurely walk all around the yard so she could pee and poop after eating. No dice. She didn’t do anything. So we went inside, and within 15 minutes she had peed on the rug in front of the door. I had to find the energy to clean that up.
And when we then went outside (on leash) to pee and poop, she got wound up in some briars and I had to go in and get her out, sustaining multiple scratches. No big deal, except that most are on my lymphedema arm, so I had to find the energy to treat them when we got back to the house, so as to try to avoid having a bad lymphedema flare-up or even cellulitis.
In short, Friday through Sunday night were NOT my hours! I think perhaps the mojo has stabilized today. So far (knock on wood) no injuries, no further doggie scratching at her head incision stitches, and I managed to feed the critters this morning without spilling kibble all over the floor… So I’m beginning to return to being a half-way, sometimes-decent human being again. 😉
As far as Maggie is concerned, it’s all good. She’s really bouncing back from her spay surgery and the bump removals very quickly. Ah, the resilience of youth!!! She was very sheepish at pulling me into the railing and hurting me. She knows that she hurt me. Whenever I approach her now with the leash, instead of acting excited to go for a walk, she bows her head and acts like the leash is a bad thing.
As for the comments from others about our health status, I’m going to work on a couple of zingers I can use when I’ve had enough of it and am once again at the “screaming, crying, crazy-woman heap of rage” stage.
You know, that was why the trip to the mountains last fall when my friends saw me have a really, REALLY bad spell was so important to me. I live alone, and usually no one sees me collapse. Gail and Rose saw it happen. They validated my experience of my body, at that time. That was a priceless gift for me. And to make it even better, their insistence that I go see my doctor about this yet again is what led HIM to refer me to Dr. Ford, who in turn has referred me to Dr. Waxman at Brigham & Women’s. In other words, I might be on the verge of having some answers! So….
The power of validation. Validation is not “me, too”-ism. Though “me, too” can be nice to hear, when the comparison is between lacerations from putting your head through a car windshield and the “laceration” of a paper cut, it’s enraging and dismissive instead of comforting. I’m sorry you’ve had to endure so much of it, Jen. Thankfully, it sounds like your hubby is pretty understanding.
June 27, 2022 at 1:56 pm #34875
@brendad53 what on earth! I think you need and deserve some down time. Kick back and watch a favorite movie, read a good book or something to clear your mind and ease your body.
I have never had success even keeping a cone on my pets. A t-shirt works well. Pull the shirt down so that it covers the incision, and tie it up so she can walk around. If the shirt is long enough, you could also cut two holes in the bottom that you can put your dog’s back legs through.
June 27, 2022 at 2:34 pm #34877
Colleen, I did exactly that. When I realized I’d hit my wall, I left the kitty kibble on the floor, threw the pissy throw rug onto the front porch, and lowered the lights so they wouldn’t bother my eyes. Then I finished watching Season Two of Resident Alien. Then went to sleep.
Later last night (before sleep) I texted my vet. She told me to use a t-shirt, too. I tried. I couldn’t keep it on her. Of course the vet didn’t tell me how to put it on, but I figured out to try to tie it. Didn’t work. Ah, well.
However, I’ve ordered a soft cone from Amazon. Should be here Wednesday. I won’t have any trouble after that!
In the meantime, she wants to go out and run around, and I can’t let her yet. Have to give those incisions time to heal so gunk doesn’t get into them and infect them.
But I note that when we go out on leash and she sees a squirrel, she alerts but doesn’t dash off, even before I tell her “no chase squirrels.”
I honestly believe that dogs (and probably cats, etc.) understand a lot more than most people give them credit for. I say, “No chase squirrels.” And I follow it with “We are leashed together. No chase.” I honestly think she understands that while she’s leashed to me, she shouldn’t run off like she did. She knew good and well that she’d hurt me, when she pulled me into the railing.
The folks at The Monroe Institute call this kind of communication a “rote.” It’s like a mental hieroglyph—a thought picture of what you’re talking about. It’s not that she understands each word I say. But she does understand the thought picture that the words are expressing.
What surprised me a little bit was how getting the mini-concussion affected my breathing and heart rate. Every little movement that I made caused me to pant, my heart to race. You’d have thought I was just getting done with a long footrace instead of walking in from the car. It just takes one out-of-normal insult to the body to create reverberations throughout it.
June 28, 2022 at 12:17 pm #34881
June 28, 2022 at 3:21 pm #34882
Oh dear @brendad53, I hope you’re resting some after all of this excitement. How are you feeling this afternoon?
You are right; animals sense things and learn quickly from their owners. Maggie Mae must be one of those little smart ones.
Hopefully, you and she will get more rest once you receive that cone tomorrow for her.
I’m grateful you left the mess where it was after a day like that! Kudos to you for going things undone and taking care of yourself. That’s not an easy feat. I can imagine living alone; it’s more challenging.
June 28, 2022 at 5:16 pm #34891
I don’t mean to brag, but….. Once she dropped her tennis ball that we throw for fun. She dropped it in the woods. I saw where she was and in rough terms knew where it was. After about 10 minutes, she wanted to play ball again. I said, “I need a ball. Where’s the ball, Maggie?” And you know what? She trotted out into the woods and got the ball so we could play again.
I think she really is scary smart. For this reason, I need to get into doggie training with her. She needs structure and stimulation (of a positive sort!).
June 28, 2022 at 5:35 pm #34898
I don’t know that it’s harder to live alone. It has some advantages. I can imagine it being harder to live with family (spouses, parents, children, etc.) in the home, because sometimes they aren’t very supportive and understanding, and that could be a huge stressor.
I guess it’s “the devil you know,” right?
June 28, 2022 at 5:42 pm #34899
I can only imagine how difficult it would be to live with unsupportive people. It would definitely cause stress. Sadly, there are a lot of clueless people out there. 😢
June 29, 2022 at 10:54 am #34905
That makes sense, @brendad53. Unfortunately, there are so many unsupportive and insensitive folks in the world. I agree it would be better to live alone if living in a home with no support anyway. Thanks for making this point; I didn’t even think of this scenario because I’m fortunate to have a supportive hubby.
About the breathing, I’m surprised the front desk staff or nurse didn’t mention it to the doctor. I wish you would have said it, but I also can understand your reasons for not adding to the mix just yet.
Did you like him as a new oncologist?
Hopefully, today is a chill and relaxed day for you and Maggie.
June 28, 2022 at 5:22 pm #34893
Today I went to my “second opinion oncologist’s” office. I see him once a year. Today was it for 2022. Just a check-up.
I parked at the door. Walked into the lobby. Got on the elevator. Got off the elevator on the 3rd floor and turned the corner to walk about 12feet down the hall to the Survivor’s Clinic door. Then bellied up to the check-in window.
I was breathing like I normally do when moving around like this. The gal at check-in looked at me and commented, “You take the stairs?”
“No,” I said. “This is how I breathe when I exert myself much. I just walked in from the parking lot and took the elevator up.”
She was surprised.
When I was called back so the nurse could get my vitals, my BP was 108/74. She was delighted that it was that low. She couldn’t believe that for me, that’s a sign that I’ve been exerting myself too much. My BP drops.
June 28, 2022 at 5:27 pm #34896
When you saw the oncologist, did you mention the trouble you’ve been having breathing? Don’t know that it would’ve made a difference, but one never knows.
June 28, 2022 at 5:33 pm #34897
Y’know, I didn’t mention it to him. It would have involved a whole, long, involved attempt to describe what happens, under what conditions, impress upon him that this is not “new” but is rather the culmination of a slow progression of symptoms since cancer treatment ended, is not cardiac, etc.
I didn’t have the gumption to try to do that with him. And since I have the ear of Dr. Ford and am on schedule for Dr. Waxman in Boston, I feel like that particular issue is being followed AND addressed medically, so why muddy the waters by adding in an oncologist?
June 28, 2022 at 5:42 pm #34900
That’s certainly understandable.
June 29, 2022 at 5:10 pm #34914
Laughing at myself…EVERY day when I log-in I read this topic title as “Born In October”? Yes, yes, I was born in October! LOL!
June 30, 2022 at 10:35 am #34920
June 30, 2022 at 2:38 pm #34930
@Colleen and @Jen, you two are too funny!
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