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Hospitalization and PH
I’ve read a couple of times from people posting here (like Randolph Reynolds, most recently), saying that they were hospitalized for something NOT related to PH, but they had a great deal of trouble getting appropriate care for their PH and *considering* their PH while they were hospitalized. The doctors and nurses didn’t understand PH or how to handle a patient that has it.
So that’s my question:
When you find yourself in the hospital for something that isn’t PH, how do you inform your doctors and nurses about PH and do so in a way that doesn’t offend them, doesn’t allow them to just ignore what you’ve said, and results in PH outcomes that are acceptable given your other health situation that landed you in the hospital in the first place?
Inquiring minds want to know.
Brenda
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53 Replies
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@brendad53 I think the most worrisome for PHer’s is those on specialized treatments such as IV Flolan like my son was. When Cullen was in grade school I took him to the ER at the hospital closest to his school regarding a minor issue. Mainly I wanted to investigate how they would handle his PH and IV treatment. They immediately failed miserably! I said never mind, got him out of there and had a big red flag notice with the school that he was NEVER to be sent to that hospital and told them which one he needed to go to.
We had his doctor and nurse on speed dial including the after hours contacts. They had to “rescue” us from lack of PH understanding a number of times.
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Yikes! It would be so scary to know that inattention at any point along the line could be extremely dangerous for your child. Thankfully, he made it through that time period…..
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Yes, I can’t begin to imagine how stressful this is for parents of our PH kids. I bet you could never fully rest, @colleensteele when Cullen was in the hospital. However, I know. Eventually, you learned which staff you could most depend on to take the best care of young Cullen.
@mamabear007, how old was your son when he was being treated for CTEPH? How did you handle these situations?
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I am sharing this for @mamabear007 as she had trouble posting her response.
@brendad53, my son found it easy to inform the doctors at the ER about his PH whenever he went in for anything because he had to explain to them about the Remodulin SQ pump and why they couldn’t remove it under any circumstances. If he didn’t have the pump, he probably would’ve had the ER doctors contact his PH specialist to make sure none of the treatments they felt were necessary would interact with his PH or PH meds. It would be the same for you, explaining that they couldn’t use any medications that would interact with any of your current meds or supplements. If they refuse to call Dr. Ford, I’d call his office myself, and after explaining the situation, I’d ask them to have Dr. Ford call the medical staff at whichever hospital you’re in.
@jenc; my son was mid 20’s when he started getting symptoms. It would be another two years before he’d get the PH diagnosis and still another 2 years after the PH diagnosis before he’d get the CTEPH diagnosis. By time he had the PTE surgery, he was a year away from his 30th birthday. As for how I handled those situations when he was hospitalized? I prayed and then got to the hospital as soon as possible, just so he wouldn’t have to be alone. After he got engaged, his fiance (who would eventually be his wife) would be with him the entire time he was in the hospital. Then, I’d pray all the harder, because it was enough for him that his wife/fiance was with him. I do have to admit that it was hard to respect his boundaries, but respect them I did. -
Hi @mamabear007, I can only imagine how difficult it was once he had his fiancé/wife with him. You must have been so worried, still. But respecting his boundaries had to be challenging. and
How do you, as parents, deal with those challenges once your children are grown and you are not in charge of making decisions? As a parent of an adult child, I know boundaries can be complex, and that’s without PH or CTEPH, etc.
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@jenc, I don’t know how other parents deal with their children growing up, especially if they’ve got medical challenges. I deal with it by praying. It’s the only thing that’s helped.
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I deal with it by biting my tongue. It has a lot of bite-marks in it! My kids would probably say “not enough!” 🙂
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And fingernails! Lots of fingernail biting they never see!
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Hey @mamabear007, yes, lots of prayers, I agree. At times, that’s all we can do. As Brenda mentions, I’ve bitten my tongue on more than one occasion. However, I bet my daughter would think I don’t do that enough. Hehe.
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Well, I’m pretty fortunate. Right now no doctors are very concerned about the mild PH. And I’m not on any particular drugs for it. But it pays to have some idea about the lay of the land off on the horizon, just so when the time comes, I have some idea of what’s what.
Regarding boundaries, boy howdy! That must have been hard. I’d find it really hard.
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Hi @brendad53, excellent question and so very important. It’s sad how often this happens still today. As @colleensteele shares with her example, those on a pump for IV or SubQ medications are certainly a higher risk if the nurses are not adequately trained.
If possible, have someone with you. In my case, I’m on all oral medications. However, those PH medications should not be missed. I’ve had times when the nurses will try to give me medicines that may interact with my PH medications, like nitrates. That’s the top medication given when someone goes in with chest pain, which I often have. Nitrates can lower my blood pressure to dangerous levels. ER nurses have attempted to give me nitro on more than one occasion. I’ve spoken up, myself, when alert. Other times, Manny has to be my advocate. Ask questions, and always carry backup medications, as many small hospitals don’t even have access to PH medications if needed for a dose.
Like Colleen, we have left a hospital and ended up going to the larger hospital with the PH center. I also have many notes; I carry my medication list, allergies, all my specialists’ info, and a few docs on speed dial.
Simple education, at times, is the way I go. When I’m alert in the hospital, I ask the nurses what they are giving me and why to see if they know. Most don’t. Some are grateful and interested to learn more. Others, well, you know, get all offended. When that happens, I ask for a supervisor or new nurse if needed.
Advocate for yourself and have a hospital “go-bag” ready with backups and all needed. Perfect topic that will grab others’ attention, and they will share their examples. That reminds me, I do a new one each year and am behind.
I suggest living near a PH Center if possible or having a doctor at that smaller local hospital that is knowledgeable, or you can teach about PH to keep on speed dial and advocate for you.
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Thanks! Since I’m not yet on any medications, I shouldn’t have a lot of trouble. But I am a pretty decent self-advocate most of the time when I’m conscious and able. Hopefully it will be a while before I have to do medications that are trickier!
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Yes, I hope so, too, @brendad53. However, oral medications take education. It’s not as risky as having IV and SubQ lines and pumps that have to be running and changed as needed.
I’ve heard too many times about other PHriends having complications with being in a hospital that is not knowledgeable.
I have no doubt you will speak up and advocate for yourself. As long as someone is conscious and alert, being your best advocate is all we can do. Sadly, we have to so we are not harmed.
How far is the nearest hospital to you? Is it a smaller rural hospital?
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Jen, my nearest hospital is a major medical center. So in terms of being up-to-date and expertise, it’s probably better than many. But that doesn’t mean you can let down your guard because of that. In fact, there’s a case to be made that you need to keep your guard up even more in such a setting!
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Hi @brendad53, you’re so right! No matter what, you can never let your guard down. I’ve seen some smaller rural hospitals give the best care, so I must agree.
It’s best never to let our guard down. We can’t afford to with a rare disease. I appreciate that reminder.
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@brendad, if/when you do get on medications, I recommend a Medical alert bracelet or necklace that lists them all (including your anticoagulant). That way if you’re ever unconscious, they won’t make any tragic medication errors. If you have any allergies, you can have them put on your bracelet or necklace.
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Excellent suggestion, @mamabear007! Not only for Brenda but for everyone. I thought of getting one years ago and never did that! I would be the one who finally bought it but then when I needed it, it would be at home on my nightstand.
Thanks for that reminder, which is a great idea for anyone with allergies and medical complications.
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Jen, if you buy one, it doesn’t come off your wrist. EVER. Except when you take a shower. And then you HAVE to put it back on again before you can put on your underwear. 🙂 Them’s the rules!
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Hehe, @ brendad53, that is a great way not to be caught without your medical alert bracelet. I’m grateful you7 have yours and shared what you have added to it. You can continually update things, right?
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Jen, that’s how I’ve lived a large part of my life: I invent “rules” for myself about things. It’s how I stay organized. For instance, my car keys live in one place. My cell phone lives in one of three places, and three places ONLY. I can’t do this until I do that first. Rules.
And yes, you can update the online info with My Road ID. In fact, I need to do that again, since going to Boston. Thanks for reminding me of that. My thinking has not been as sharp as it used to be, for quite a number of months. I notice I’m better some days than others, and I suspect it has to do with my daily baseline oxygen levels. Last weekend my dad (age 92) had a small stroke that has left him unable to function well on his own, so I’ve been communicating constantly with my brother about things out in KS. With the result that I’m even more scatter-brained than normal. So right now, the reminder to update my Road ID is valued.
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Hi @brendad53, I’m sorry to hear of your Dad’s stroke. Wow, 92! That’s horrible that it left him unable to function. I’m sure that has added stress, and you have had him on your mind. I hope that he recovers. Was that the first time he had had a stroke?
My mother had several small strokes about 2 years after my PH diagnosis. She was not in good shape for about a month. Thankfully, she slowly recovered but never could return to work. However, she was planning to retire in 4 more years. A stroke affects everyone so differently; I hope this is one that he can bounce back from. It isn’t easy being so far when our parents are aging.
About a year after my mother’s strokes, I had a bad reaction to a medication my PCP started me on. Poor Manny rushed me to the hospital, thinking I had a stroke. My tongue was swelling, and I couldn’t talk. I was trying to tell him to take me to my PCP to get an epinephrine shot or something. Thankfully after a few hours on IVs, I was better and went home. He just knew that this was a stroke since my mom had those strokes. I can relate to your concerns, too.
Please keep us posted and take time to destress. Big hugs.
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Thanks, Jen. It’s encouraging to think that Dad may yet get somewhat better. My brother went this morning to look into getting him an assisted living apartment at the local senior center. Dad has adamantly said for the last 10 years that he does NOT want to do that. Ever. But when Gary talked to the Showalter folks, they said it sounded like Dad might need to be in the nursing home section, not independent living. When you’re in that section, you’re lucky to have a small room to yourself. Often you have a roommate, too. That will kill Dad. He will just roll over and die. So I hope his after-effects improve enough that, like your mother, he is doing better and can remain in his home. At this point, I’m feeling rather overwhelmed and a bit weepy.
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Hi @brendad53, I hope things have improved some for your dad. I know it’s challenging and frightening as our parents become older and we are so far away. How are you doing emotionally?
Like your dad, my dad always jokes and asks which one of us girls he will live with. When my late stepmother passed away in 2014, everyone said he would return to Texas with me. However, my dad is active and enjoys “piddling” around the yard and in his shops. That’s his life. He always thought Texas was busy. Now that I’m in California, he doesn’t fly, so I know there is no way.
This tears me apart some days, especially when things go awry and he is sick or having any problems with his health. But he told me I should live my life and not have to worry about him or my mom. It’s tough, to say the least.
Hugs and prayers are with you from SD.
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Hey, Jen. No great improvements, I think, for my Dad. I think this is probably the beginning of the end. We’ll just have to see how long “the end” takes. My brother and I are trying to figure out next steps. A long and confusing process.
I’m holding up OK. Well, mostly…. This morning I was fixing the dogs’ breakfast, and I had their daily multivitamins lying on the counter as well. I was also dipping into the chocolate-coated pretzels nearby for a little nibble every now and then. Suddenly I realized that the last pretzel tasted really nasty. I looked down, and saw that instead of two doggie vitamins on the countertop, there was now only one doggie vitamin. Hmmmm…..
So other than being a big distracted–more so than usual–I guess I’m OK. 🙂
I also tore something in my knee the other night. One of those “screaming, searing” jolts of pain that repeats itself every time you move your body, much less your knee. That is getting better, but need to chase down what it is I ripped that night. I’ll be going to KS before long, though, to care for my dad for a bit, so the knee imaging has to wait.
I know how you feel about your dad being so far away from you. Do you have other family who live closer who can help if needed?
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Hi @brendad53, I’m sorry to hear that there have been no improvements so far with your Dad. I can only imagine the stress and distraction you are struggling with.
OMG, I guess you have an extra dose of vitamins that should help. That must have tasted quite strange after eating chocolate-dipped pretzels. Are you a stress eater, too? That’s me; either I eat junk when I’m stressed or not much at all. It depends.
It sounds like your knee pain is no fun. Don’t you want your knees to be in good shape to go to KS?
Yes, my sisters are both in Texas. However, my dad has a town brother; my uncle is about 15 minutes away, and he has lots of churches and other friends, too. I have one long-time family friend I can call on to check on my dad if he isn’t answering his phone, etc. He’s also good at keeping me updated if something is wrong.
I’m the one who calls to make sure he is taking his meds, has his blood work and doctor appointments, and at times refills his mediatizations over the phone. I’ve had to let him do some, and he’s pretty good at keeping me posted. I have his appointments on my calendar to remind him and call and see how things went. But I know when I see him, I will need to fly down there to visit. He’s on the Alabama-Mississppi line, not far from Louisiana, either. He is about 7-8 juour4s from my younger sister in Texas. He drove himself there for thanksgiving, but it’s getting too much for him.
Take care of yourself so you can care for your dad when you go, Brenda.
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Jen, I swear I’m getting senile almost as fast as my father! I thought you said you were an only child?
But it is comforting to have family in the area who can jump in and respond if quick action is needed.
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@brendad53 you just got us confused. I’m the only child.
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Hi @brendad53, yes, @colleensteele is an only child. However, my KK is an only child, too. Maybe that’s where the confusion comes in.
It helps, even if they are 7-8 hours away. At least they can drive there. But, for me, it is a flight. That’s one main reason I wanted to try flying alone in case I need to take care of him in the future.
Is your brother the only sibling near your dad? Or do you have a larger family?
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@brendad53 I caught what Cullen had and was out of commission at the end of last week. I’m catching up on the forums now and just read about your dad. I can commiserate with what you are going through and feeling.
My dad is also in his early 90’s and my mom late 80’s. They still live in their home which is way too much house for them to handle now. They are in NJ and I am in WA state and I’m an only child so needless to say, I worry about them constantly!
When my grandmother suffered a stroke my dad brought her to our home and cared for her for over a decade. He did his best but at his age it got really hard on him as she declined. He eventually placed her in a nursing home. He has sworn since then that he would never want to put me through that – he wants me to place him and my mother in a home if it comes down to it. But as we are getting closer to that need I’m not sure he’s as certain about that now.
It’s so hard to see our parents decline and make tough decisions for them. I will keep you and your dad in my prayers!
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Hi @colleensteele, I’m happy that you and Cullen are bothy feeling better than last week. Yers, grief certainly can wreck havoc , especially on bodies that are already worn down some.
I know you’ve struggled for several years as your parents grow older. I can’t imagine how much difficult this is for those who are only children like you and KK. Like your parents, I’ve always told KK to go live her life and don’t allow me and my health struggles to stop her from any dreams.
That doesn’t mean she isn’t concerned, I just hope she never feels she “has” to do it as an only child. Some does has some of my worry wart habits, but she also is more go with the flow like Manny some. Hopefully that will balance her some.
It’s taken me several years of therapy to realize I can go live my life and be where I want to be. However, still I have days where I am full of guilt. do you also struggle with this at times? How do you manage when this happens?
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When I got alpha-gal syndrome, Mama Bear, I got such a bracelet. It has a very brief alert on it, and then gives a website where my health info is detailed. When my medical diagnosis or treatments change, I update the website.
Trouble is, I’m not totally sure that anyone will actually LOOK AT the bracelet if I’m unconscious!
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If I knew any EMTs, I’d ask them of the likelihood of their colleagues looking at the bracelet. The only thing I’m sure of… You’ve got a better chance of them looking it up if you’re wearing the bracelet than if you’re not.
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That’s for sure, Mama Bear! If you have one, they might look it up. If you don’t, they certainly will NOT look it up!
I struggle with wording. How much to say? How many words will be easy for them to read quickly, react to quickly, and prompt them to go to the website and get more detail? How many words is too many?
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I think current meds and allergies for sure. Then a list of conditions that can cause problems the might leave one unconscious (just so they know what to alert the doctors about).
Maybe others will have tips about how much they include.
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You’re right. It’s actually TWO locations where you have to think about “how many words.”
I was actually referring to my medical alert bracelet. Is it too wordy? Will they read it? Is the type too small to easily read, so they will not stop to look slowly and closely at it?
Then, assuming they DO read the bracelet and go to the website, I’ve spent a lot of time trying to make that info as concise as possible.
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I’m pretty sure EMTs have to have good eyesight. Or at least eyesight that can be turned good by the correct glasses or contacts.
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Before I went on Adempas, I had a prior allergy to Nitro. Now I am on Adempas and it is directly basically forbidden. I tell everyone,no matter what, NO NITRATES in any form. I had ER nurses tell me that it was up to the doctor and not me. WELL, I had to get more forceful and basically say it will most likely kill me. That seems to get their attention. I have it documented everywhere. Still scares me every time.
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Jill, pardon my French, but bull-hockey! Up to the doctor, not up to you?!! When you are sitting there telling them that they should not give that to you?!
It is up to the patient, in the end, as to whether they wish to do what the doctor SUGGESTS or not. Always. Unless the patient is unconscious and unable to make their own wishes known. This is called “participatory medicine,” and it is a patient’s right.
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Hi @upshtcx, yes, that’s for sure. I am not certain why some nurses think they are God and know everything. Those are the scariest ones to have care for you, especially in these instances. I’m sorry you’ve experienced this; it’s scary as heck! Medical errors happen by accident, but when you or your advocate is saying that you can’t have certain medications, and they want to tell you you are wrong, I’m glad you got through to them. It’s sad how hard we must PHight to stay alive some days.
How have you been? How were your holidays?
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My pulmonologist told me which local hospital and physicians would work with the hospital that treats my ph, and this info is in the bag I have packed, along with my pah meds. All of this info is with life alert to relay to the emts along with instructions to take the to go bag and which hospital they are to take me to. They also call the person with my medical power of attorney. We had to call life alert once but wound up not having to be taken to the hospital and everything worked as planned so I feel pretty confident.
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Hi @jo-ann-white, wow, you have an excellent plan in place. I’m grateful that you have shared this with us all and have us all thinking more about what things we ALL need to have in place.
Did your medical team help you plan or your family and friends?
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My local pulmonologist and my friend with medical power of attorney helped me plan for a possible future hospitalization. My first hospitalization was not a good one…I was diagnosed with pah while there but almost died after right heart cath due to sedation… so it seemed imperative to get a detailed plan in place. It seems I spend half my time planning. If I am going out do I need a full oxygen tank? How do I arrange cabinets to not have a lot of reaching and bending? If I change oxygen machines to go out into the garage (cord from main machine reaches all of inside but not the garage), what might I need in the next few days that I can bring in with me? If I am doing a grocery delivery, order everything heavy and no perishable so the friends who pick up produce and such on their weekly excursions won’t have to do much. Note that as I live alone and nobody wears masks I don’t go into stores due to risks of Covid and flu.
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Oh no, @jo-ann-white, I hate that you learned about planning AFTER a bad hospital visit that could have been extremely dangerous. I’m grateful that you had a medical team and a supportive friend and advocate who could help with your planning for any future hospitalizations.
You are right! I often tell my closest friends that I have to plan everything! We cannot jump in and go places as many do. Although I’m sure I get out more than you do, I am planning medication, oxygen, routes, parking, capacity, and energy, to name a few.
Many people don’t know about the pre-planning we do to do anything. That’s relatable, my PHriend. Thanks for sharing.
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I had a hospital stay a few months ago when my blood pressure sky-rocketed. They decided to admit me to the cardio-ward after I had come into the Emergency and no-one seemed to know what to do with me. I kept telling everyone about my PH and my heart condition, but didn’t feel it was getting through. Anyway, after fluffing around for an hour or two I was sent up to Cardio where I spent a few days. Echo – all clear, angiogram – all clear, blood test – troponin through the roof. I knew my only problem was getting my blood pressure under control but they wouldn’t give me the meds I knew would help, even after my husband brought in my bottle with the label on it. However, I was given my usual other tablets regularly 4 hourly but had to ask what they were each time to ensure I knew what was what. (I hung onto my ambrisentan as I knew they could not supply them from pharmacy and if they got lost I had a problem.) When I was given the first lot of tablets, I asked what the 2 large white ones were – Panadeine Forte (paracetamol and codeine). But I never take these. They’re on your chart. Why? For the pain, just take them. No, I have no pain and I never take them. Yes you do, you’ve probably forgotten. At this point, I think my BP went up slightly. Still they kept bringing them to me every 4 hours and I kept ignoring them, every 4 hours. The elderly lady in the other bed had the opposite problem – they wouldn’t give her Panadeine Forte – it’s not on your chart – it should be, she insisted. So I suppose you’ve guessed the problem now? Best bet? Stay out of hospital !
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Having a mix-up is alarming, but it happens.
Their insistence that they were correct and you were wrong, and they’re keeping on giving you these pills just makes me angry.
Their refusal to RECOGNIZE that there was a mix-up at all is mind-blowing. Sadly, not unusual for medical care. But mind-blowing nevertheless.
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Oh no, @auntlizzie! That’s so frightening and horrible! I know those mix-ups happen, but this can potentially kill someone. Besides, your poor roommate probably suffered pain without her pain medications.
How is your BP now? I bet getting out of there helped it come down a bit! I hope you and your roommate both file complaints with a patient advocate. This is unacceptable.
I’m sorry you experienced this when you knew what needed to be done. I’ve had them try and give me 4-5 types of PH treatments. They never saw that most were discontinued. I told them, and they kept saying they would call my doctor. I told them my BP was low, ] and they would probably kill me by giving me all of those at once, and then I called my PH doctor’s cell phone. He came right up and was not happy. That was once we filed an official complaint with the hospital and the state of Texas.
It’s scary, but what are we to d when we need emergency and hospital care? I try my hardest to stay at home if my doctors allow that and do mostly what I know they do at the hospital for specific problems since I’ve been through most times.
@auntlizzie, I’m grateful you’re still her to share with us. How have you been since getting home?
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Thanks Jen, I’m really good. My PH is stable and my heart ticks away with it’s pacemaker keeping a watch for irregularities. My big problem has always been the sky-rocketing blood pressure I get every few months , and for no apparent reason. Now this is not for everyone, but finally recently, my cardio suggested I try a very small dose of a beta blocker I had used briefly some time ago, then 15 minutes later a second very small dose. And, for me (I stress, for me), it works wonders. My BP goes back to normal within 20 minutes or half an hour. Beta blockers can have nasty and dangerous side effects so it’s not for everyone, but I tell this story so you can see that often it’s something unexpected that can solve a health problem.
Apropo of nothing – I have a family of tadpoles growing in my birdbath and they love squashed green peas. Little things are dashing about with more energy since I fed them the peas. LOL
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Hi @auntlizzie, I’m grateful that you are good after that mishap! It also sounds like you and your medical team have found a plan that works for your high BP. Thanks for sharing that because although it may not5 be appropriate for everyone, someone may have high BP and can ask their team if this may be an option.
Yes, beta blockers can have nasty side effects, too. I have heard dizziness most often. But a few times, I’ve known people that have trouble sleeping taking those. What are the ones you struggle with most?
Interesting, I just learned tadpoles like green peas. How cool it is that you can feed them and watch them grow.
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@auntlizzie when you got to the part about your roommate not getting the pain meds she was supposed to have it hit me what happened and I felt my blood pressure rise! It’s bad enough when medical mistakes are made but when they don’t own up to them that is infuriating! I almost wonder if some facilities train their staff not to acknowledge mistakes.
My son struggles A LOT with high blood pressure for a few years after transplant. He placed himself on a strict diet of no sodium or caffeine. That helped a bit and after years of trial and error his team found the best med combo for him, amlodipine and carvedilol. Knock Wood his BP has been very good for the past few years.
I assume they keep a watch on your kidneys? Kidney injury or disease can cause BP that is difficult to control.
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Hi Jen – the beta blockers I use, and only when I get high BP, is a 12.5mg bit then 15 minutes later a further 12.5mg bit. My pill cutter crushes the main pill a bit but I keep the resulting dust for the second dose. My Cardiologist knows I am very susceptible to high doses of anything and prescribes accordingly – have I not said this before – I just love him!
Colleen – I get blood tests once a month to keep an eye on my liver and kidneys, and they are OK. The sudden high BPs are still a mystery, even after all sorts of strange tests.
Have to go – just had a very loud crack of thunder overhead – storm coming.
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Aunt Lizzie, a have a friend (non-PH) who is also experiencing that suddenly high BP thing. It just started. No one knows why. Just like in your case. A very curious situation.
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Hi @auntlizzie, perfect; it sounds like you and your Cardiologist make an outstanding team! Isn’t it great to have such a good doctor on your team? I am fortunate, too, with most of mine.
It’s great news that your liver and kidney are doing well, and 6they are keeping an eye on both with blood tests. Excellent reminder, @colleensteele.
I hope you are safe today and the storms are past you. Is this a stormy season there?
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I like this. Sounds like a really good plan. May have to copy it for my own level of need.
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