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What has been your most frightening PH experience?
If someone were to make a Halloween movie out of your most frightening PH experiences, what would they be about? Examples would be when I picked my son up at school and noticed his central line was hanging at his side instead of inside his chest. Or when his hampster bit a hole through his central line and when his dog got tangled up in it at the top of the stairs, almost pulling him down them. Even his transplant dry run was full of nail-biting moments.
I know this is a heavy topic, but we keep going in these situations. -
50 Replies
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That’s an easy one for me. Picture me starting a new job, knowing my son wasn’t well, but not knowing why. A few weeks after the job starts, he’s hospitalized for a RH cath for what the doctor is sure is PH (and then to stay until they’ve figured the right dose of Remodulin SQ). I can’t skip work the first day he’s in the hospital, but I arrange through HR to take a few days off until the doctor figures out his treatment. HR told me to get a note from my son’s doctor before I come back to work. I don’t remember everything the doctor’s note to my new employer said, but I very much remember the part that said, “It is unknown when or if he will leave the hospital.” That was the first time I realized how dire his situation was. There were many scary moments after that, but that is definitely the one that sticks with me the most.
That job lasted a few more weeks, and then I was fired for not being able to keep my entire focus on my job while I was on the job. I don’t regret losing that job at all.
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Hi @V.R. Peterson, it’s unfortunate you lost your job while trying to care for your very sick son. Like you, I would have made my child a priority and never looked back, as it sounds like you did.
I can’t even imagine hearing that about my child. How did you and your family cope with this dire comment? Your son is fortunate to have such a loving and supportive mom.
How about our other caregivers? What emotions pop up when you read these comments shared by V-R and Colleen? Extra big hugs and love for you all, our exceptional caregivers who, in my opinion are the MVPS!!!🏆
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I knew my husband couldn’t deal with that information, so except for my employer, I’m the only one who ever knew. In fact, sharing it here was the first time I’ve ever “said it out loud.” I dealt by praying as hard as I could.
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@V.R. Peterson hearing or reading that your child might be terminally ill is without a doubt, a parents worst nightmare! I was fortunate to work for a church, and Cullen’s school was across the parking lot. They were very understanding until I was gone for 4 months for his transplant recovery. I had to leave the position and I too, have no regrets. I will always put my children first, no matter how old they get!
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What a creative and vital topic, @Colleen. Yeah, these experiences are a bit dark, but we also made it through them.
One that pops into my head is when I had COVID and wasn’t expected to make it. Then, two days before I was discharged, PT and OT were in my room to help me relearn how to brush my teeth and hair and sip through a straw.
On my day of discharge, I recall my sweet and caring PCA helping me to get dressed and in the chair next to my hospital bed. This was one of the more frightening moments to need help for everything like a child.
Of course, because Manny was also home with COVID-19, the theme would be alone and dark. Waking up and not knowing what happened, where I was, and why my family wasn’t there was the worst! Unfortunately, I wasn’t the only one.
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Oh @jen-cueva I can’t even imagine going through that alone! It must have been horrifying! {{{hugs}}}
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@V.R. Peterson and @Colleen, yeah, this season has been on my mind tons lately. It was like it was yesterday. But I’m incredibly grateful that I can now look back on that and see how far I come.
It was terrifying to wake up and not know what was happening, where I was, and where my family was. Thankfully, I’ve got a strong support team backing me, including you all in the forums.
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@jen-cueva I remember this like it was yesterday. Worrying about you and not being able to communicate with you was a nightmare to me. Knowing how worried Manny was and how confused you must have been was horrible. But you are amazing and got through it! Love you!
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During a right heart cath, they punctured my lung and I got a significant pneumothorax. The chest tube and pain were not fun.
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Oh no, @Ann, I’ve had a chest test once, and that is not fun and quite painful to wake up to. I’m sorry that you went through that experience with a RHC. Do you continue to have RHCs often, or do they use echocardiograms more with you after this incident?
This must have been frightening to awaken to. Hopefully, you had family or loved ones around you.
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Oh @Ann I am so sorry that happened! My son had a heart and double lung transplant and the chest tubes hurt more than anything that surgery put him through!
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@Ann, your response abt the RHC and punctured lung reminded me of an experience I had. When I first began to have multiple symptoms (before any diagnoses), I was admitted to the hospital because of very severe shortness of breath. I had 2 thorensetisis done in 3 days, then a procedure to drain a pericardial effusion. I had general anesthesia and woke up 4 days later in intensive care with a trach, tubes, etc. Talk abt frightening and confusing! They had nicked my liver and I went into hemmoraghic shock. It took hours for them to do a CT to find what was wrong. They called my family in and told them “she’s not going to make it.” I was then airlifted to UVA with acute respiratory failure among other problems. At UVA I was diagnosed with heart failure and PH. At that time I didn’t even know what PH was.
This is an awesome forum. I have made friends and gleaned much info from the articles, etc.We will continue fighting! We are all warriors!
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I am so sorry that happened to you. I always cringe when people say I’m having a simple procedure or surgery. They might seem simple until something untoward happens. I’m so glad you made it! I kept telling them something was wrong during the procedure and they kept giving me more fentanyl. We had a long discussion afterwards about listening to patients. My husband has been a malpractice defense lawyer for 40 years and we know things happen. My main concern was that they initially did not listen to me and kept giving me more narcotics. I realize everyone has a different pain threshold. Mine is quite high. As my internist said, if you say something’s wrong, it is. Best to you and best to your health.
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@Ann , good grief! Not only were they not listening to you, they kept giving you more fentanyl which I’m sure made it difficult for you to continue speaking up and advocating for yourself!
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@DeLois Tweedy, I can’t begin to imagine how terrifying that was for both you and your family! If I may ask, how are you managing that memory? Any PTSD?
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Wow, @DeLois Tweedy, how frightening this must have been for you to wake up to, but also your family! This would undoubtedly be something I would struggle with if I went near that hospital. Did you develop any other outlooks on healthcare professionals because of this experience?
PTSD would certainly make sense. Thanks for sharing your experience, Dee. But I also bet your career helped you get through this experience and the love and support of family and friends. It’s so interesting to go back and remember these experiences; they were not easy but made us stronger for the most part, right?
Hugs and love to you, Dee!
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Trying to run my repair shop with a concentrator strapped to my back. Forgot myself once and hi-tailed it across the parking lot to get a customer’s car to work on and went too fast. Found myself sitting in their car not being able to catch my breath. Starting to black out and thinking with all I’ve been through in my life (combat, the Marine Corps, etc.) I am going to die in someone elses car in Custer, SD. Getting extremely scared as I fought for air. Don’t know how, but I finally stabilized after seeing black spots in front of my eyes and slowly made my way back to the office wondering if I have nine lives.
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@Steve Sallee, I can imagine the customer was scared, too! This darn disease and how much it effects the lives of the patients. I’m so sorry you have that memory stuck in your head. Did you have any remaining side-effects after that event?
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No side effects at all. Just a bad memory. In fact, after getting my new lungs, it feels like it happened to a former incarnation of me.
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This would be extremely frightening, @Steve Sallee, for you and the customer. I grew up in a tire shop and parts store with my dad and his family. I can picture this and how we would have felt if it was one of our guys in the shop working on cars—thankful that you made it back to the office, but still not a fun memory, Steve.
As a Marine, you must have felt this was even worse than you saw in combat. Happy belated Veteran’s Day, by the way, to you and our other Veterans. How are you managing lately, Steve?
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Doing very well these days. New lungs are working perfectly. Yes, this was much worse than combat. You can’t fight back when its your own body. The feeling of helplessness is much worse.
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@Steve Sallee that is what we love to hear…perfect working lungs! What have you been up to lately that you couldn’t do before transplant?
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Just bought a house in Nebraska and am in the process of renovating the garage/shop. Climbing a ladder, painting, putting up walls, etc. Stuff that would have previously been a pipe dream. I also went back to work at a NAPA Auto Parts Store. The constant out-of-breath condition is a memory. If anyone out there is eligible and contemplating a lung transplant I am here to tell you that for me it was the best decision I have ever made.
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What an incredible update, @Steve Sallee! Congrats on the new home, and I bet you’ll enjoy remodeling the garage, too. Kudos as you keep Napa Auto Parts moving; that’s a huge one, too.
It’s fantastic to hear what you can now enjoy without wondering if you’ll make it through it all without struggling so much. Thanks so much for sharing your uplifting journey and message to anyone contemplating a transplant!
Do you have any plans this busy holiday season?
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No, just gonna put the time off to good use. I put a skeleton on the bench I have in my front yard for Halloween. Think I’ll leave him there and put a Santa hat on him. Have a happy holiday.
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Love that idea! You can share pictures here now! I’m sure we would all get a kick out of seeing it!
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OMG, that’s too funny, @Steve Sallee! I want to see a picture of that. It reminds me of a sweatshirt I have on. I’ll have to post a pic of that here shortly.
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Here’s the sweatshirt I have on today. If you can’t read under my Santa skeleton, it says, “Baby, I’m Dead Inside”- hehe. I’m sure he is also holding a mug of something warm and cozy.
😂
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@jen-cueva that sweatshirt is too funny! LOL!!!
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LOL, thanks @Colleen! Each time I wear this sweatshirt, I think of Britt! With her humor, I could see her wearing this to an appointment with her doctor. I sent her that picture the day I wore it and shared it!
Seeing the side-eyes and looks I get wearing my oxygen and this sweatshirt is hilarious🙄!
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@Steve Sallee congratulations on your house and most of all, on the many ways you are enjoying it because of your new lungs! And you returned to work!! I am so, so happy for you!
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Colleen, I probably do have PTSD, though I’ve never really thought abt it. I do know that I experience fear every time I think about going to that hospital – for anything. I always opt to go to UVA, which is just over 2 hrs away from my home, vs that hospital that is an hour away. One thing for sure, that terrifying experience taught me to be an advocate for myself!
My heart goes out to those who have had horror stories to deal with. PH is enough to deal with daily without having other bad experiences to work through. If only all medical personnel were more in tune with their patients and this disease. It makes me more thankful for those who seem to truly care.
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@DeLois Tweedy, I can relate to heading toward a more reliable hospital instead of a closer one. There was a hospital across the street from my son’s grade school. It was a small town hospital. My husband and I took Cullen there once for something minor and non-PH related to test their abilities. They failed BIG time! They had no clue what PH was, and his Flolan pump freaked them out.
Fast forward to the day I pick Cullen up at school and see his central line hanging, unattached to his chest. Not receiving Flolan for an unknown amount of time was a life-or-death situation. The first responders were arguing to take him across the street. I asked the responders if they knew what PH was (Silence) and if they were familiar with Flolan (Silence). I pointed across the street and said they didn’t know either! I ended up screaming…he will DIE there. He must go to Seattle Children’s…handed them the phone with Cullen’s PH specialist on the other end. They finally listened.
I worked at the parish attached to Cullen’s school, so I was usually always there for emergencies, but I had it in his school file what hospital he had to go to if he needed one. I also had that information on his person at all times.
If you feel strongly about it, I recommend you do something similar. Maybe keep a note in your glove compartment and your purse saying, “Please take me to (hospital).” Also, let family and friends know what your preference is. Two hours is quite a distance, so in a dire situation, you might have to opt for closer and hopefully get transferred later. Also, keeping a trusted doctor and/or nurse on speed dial is a good idea.
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Oh I have so many incidents where my pump has stopped working or malfunctioned while I have been out for the evening. Those I have gotten used to and know how long I can stay out before I have to go home to get my other pump. The best one was I out with friends listening to a speaker. I had a pink shirt with a brown pattern on it. I looked down and there was blood on my shirt. Now at first I thought I was seeing things because of my shirt color. So I quietly turn to my friends and aske them if they see blood.
They were like “yes!” So I politely get up and go the the ladies room. I am in there and cannot figure out where the blood is coming from. I check my line, it seems fine, everything is attached. etc…so I call Accredo to talk to the nurse (mainly because at this point my friends are panicking) I talk to the nurse and it looks like my q-site maybe was loose. So I tighten it and change it when I get home. All is good.
The next night out again and it happens at the same time. My shirt gets bloody, but nothing seems wrong. I am not worried, because I am just not someone who gets upset quickly, but my friends are
beside themselves. They want to rush me to the ER etc…So again I go to the restroom and the lighting was better and I found a pinprick hole in my line. Now it is actually in my line not the extension tubing.
I wish I could say I am a great patient and rushed to the ER, but I am not. It was The day before christmas eve and this was the first christmas had actually felt good. So I called the after hours doctor and left a message and then was on my way to CVS to get some superglue (do not judge LOL). The fellow calls me back and he says go to the ER I say no, I will go on Christmas, it’s only one more day. My doctor than called and told me to get to the ER no excuses. Now I only live 10 ,mins from the hospital, but I know there is a chance they are keeping me and I am not going to ruin christmas again, but I go anyway and figure I will just not agree to stay overnight.
So I get there and realize that they have no idea how to treat a PH patient, so I take advantage of that.
They do not put my line in my arm, they just leave it. Invasive radiology comes they can piece it together, but they need to superglue the pieces together and my pump cannot run while it is drying.
Again if I were a good patient I would have said something, but I wanted to go home, so I said no worries, just turn the pump off and in Four hours I will turn it back on. So that’s what I did. Now come Monday morning my PH nurse called and when she found out what happened she nearly had a heart attack, and told me I was an idiot. I agreed, but it all worked out. That line lasted 11 years before I had to have it replaced.
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Oh my, @Kathleen Grady, I must be on your side here. However, your friends sound like my hubby, Manny. He and my daughter would have me at the ER faster than I could call. j
I’ve never judged anyone using superglue or duct tape, mainly to avoid being admitted on Christmas.Geez, do you still go out with this same group pf friends? Hopefully, they know what you will and won’t tolerate at some level. If I were new to a line, this would be frightening, but as with you on so many occasions, I bet you have been through the wringer with that line.
Thanks for sharing. I hope you are doing well, Kathleen!🤗
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Oh I still go out with some of those friends. My friends have a joke. No one needs to panic over a situation unless I am panicking, then stuff is real. They all just worry about me, which is nice, and I am glad that they do. I do not mind when they fuss, I look at it as they just care. They are very good about what is happening with my PH. If they are concerned, their first question is usually what did your doctor say. If he is not worried, then they are okay. They know he does not panic either, so if he is concerned there is good reason. When my line got infected it was during covid and I got a line infection and covid the same week. I did have to go to the hospital because of the line infection, not the covid, after that they were convinced I am invincible. LOL.
All is well here, been trying to keep positive as the holidays near. My mom recently passed away and it has been tough, we were super close. So I am doing things a little different so I do not get too maudlin about it.
Hope you are well
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LOL, @Kathleen Grady, I am so grateful you have such supportive, caring friends who understand. Are they all long-term friends or a mix?
My deepest condolences on the recent loss of your mother. That must be so painful and difficult, certainly during the holiday season. I’m hopeful that these same supportive friends are keeping you in check and supporting you as needed during such a challenging time in your life. My thoughts and prayers are with you, my dear PHriend.
I am doing pretty well, thanks. Take care of yourself, mentally and physically. 🤗
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Oh @Kathleen Grady my dear…I was stressing just reading about this. I’m sorry to admit, if I were there I would have been telling you to get to the hospital and speak up…you idiot! 🤣 I’m assuming you were on Remodulin? My son was on Flolan and there is no wait time on that. Cullen would get very sick fast when he wasn’t receiving his meds properly. So I guess I’m coming at this from that experience.
But hey, I’m relieved to hear it worked out! Please, no crazy emergencies this Christmas!
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@Collen, @jen, @v-r-peterson, @Ann, @Steve Sallee, @Kathleen Grady, @DeLois Tweedy Tweedy. My heart goes out to all if you. Each story you share is so frightening, each one touched deep in my soul.
Two of my most frightening – I was unaware I close to checking out both times my organs were shutting down. I also had a time when my IV line unclamped, not knowing it till looking down and I was in a pool of blood. Of course it was a Sunday night. I called Accredo Nurse and he spent an hour on the phone with my husband and myself till we were able to get the Remodule medication pumped all the back clearing the line. The next time the line just came out we went right to the ER in Seattle – 2 hrs away with a ferry crossing.
Sending all of you hugs, please keep strong, we need to listen to our bodies and we need to make doctors, nurses, techs listen to us and if not insist on getting someone who will.
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Oh my, @Carol Volckmann ! Thank God for the Accredo nurses for talking you and Dick through the one incident. But, still, how frightening this must have been for you both. Was this early after your line was placed?
The other ER ride across a ferry, sounds daunting. I don’t know how slow and far that ferry ride is but the ones I’ve been on, is a slow process. So, again, my heart goes out to you. I’m extremely grateful that you and us all sharuing these examples of close calls are still here to share.
It helps to know we are all in the PHight together! I am fortunate to have all of your support in the forums, too. Hugs and love to all…may we all continue to keep on PHighting!!💜
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@Carol Volckmann so you liked to complicate things that Cullen always has? LOL! Way too many times, Cullen experienced emergencies in the middle of the night and on a weekend! Rarely in the middle of the weekday when I could easily get a hold of the doctors and nurses who know him.
There are some really good Accredo nurses out there. We have known a few that we could always rely on! So glad you had excellent help when you needed it most!
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LOL, @Colleen, it seems these complications tend to occur at odd hours, right? I’m grateful for the amazing Accredo nurses on call and available to help you with Cullen’s mishaps and also with Carol’s emergencies.
I’ve spoken with and met some incredidle and extremely knowledgable Aacredo nurses.
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@jen-cueva I had no idea when you had Covid you nearly did not make it. Then being discharged and going home with Manny down with Covid, you had to isolate yourself all the while being so weak and disoriented yourself. Oh Jen my heart and love go out to you. You have had such a rough road, yet stay positive with gratitude and looking forward to every moment.
I am so sorry to hear about your best friend – so glad you have each other for support and love ❤️. I am sending such warm loving hugs to you and hoping I will be able to give them to you in person this winter ❤️. Happy, happy 50th! 😊 and beyond. I was diagnosed about the same year given 3-5 years. Well I am now 79 and plan to be around fir a whole lot more!
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Oh, my dear PHriend, @Carol Volckmann, you’re too kind. But it was a challenge, and no one could come over to help us either. But for me, the absolute worst was alone in the hospital for weeks.
Of course, I owe it all to the wonderful care I received from the staff who were putting their lives in danger to help me. COVID was such an overwhelming time for everyone.
Thanks for youtr thoughtfulm words, they mean so much. I appreciarte your birthday wishes, too! I am working to make 60 next!! Dr. Channick, my PH doctor, said then I would be up there with him, hehe.
Yes, we are hopeful for hugs in person this Spring. Take care and focus on regaining your strength, my PHriend. 🤗
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@Randolph Reynolds asked me to share the following scary experiences he has had:
I cannot match these frightening stories on this topic. Usually if something bad happens to me I try to solve it on my own and don’t get fearful. Twice I should have. The most recent was just over a year ago when I collapsed and my wife called the ambulance. I was rushed to ER then directly to Intensive Care. It wasn’t until the next morning that it occurred to me that I might have not made it because my blood pressure and oxygen had dropped to perilously low states. I had double pneumonia. Had it not been for my wife calling 911 I would not be writing this.
The second took place four and a half years ago. The first part is sort of funny. I had been using a Inogen compactor for about two years. I was scheduled to see my cardiologist for a check up. I was used to coming off the compactor when I was volunteering at the hospital and a couple of times I collapsed there. One time they called Code Blue for me but I got myself going again. This time the nurse in the office had me get up on scales to take my weight. I set the compactor down and took the cannula out of my nose. Suddenly I collapsed. The doctor got on the floor with me, two nurses came up. I just said, ‘Give me a moment and I’ll be all right.’. Nope soon I was in an ambulance to take me to ER just across the street. The ER doctor called for some tests but I told him there was nothing they could do about my condition. Two hours later he agreed and I had to call my wife to come get me. She didn’t know what happened.
The following week my wife had to take me to my PAH specialist for a routine checkup in Phoenix. My expectations were that everything would me routine. I had my compactor and was on Remodulin. The first thing he said was “How would you like to go to the hospital?” I resisted but he insisted. Now I was not frightened I was in shock. Yes things were not good. I had really bad edema, it was hard to keep my oxygen levels up, but fortunately, after three weeks, I was allowed to return to Prescott but now with full time supplemental oxygen. By the way I wrote about that in my book Milliscent and Me.
We all know who our redeemer is and can be grateful
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Wow, @Randolph Reynolds, you’ve shared an incredible collection of frightening moments. It’s truly remarkable that you’ve triumphed over them and are here with us today! What a blessing!
I can imagine that your career as a fighter jet pilot has instilled in you not just PHearlessness but an unwavering sense of courage. Huge thanks to you, @Colleen for sharing these extraordinary examples from Randy. It’s a powerful reminder of the abundance of blessings we all have. 🤗
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@Randolph Reynolds there is no matching others stories because when it comes to personal health, any experience that can seriously jeopardize it is scary. There is no measuring it.
I remember the stories from your book but you still had me gasping, “Oh no,” as I read it again. So happy you are still with us and God willing you will be for a long time. Praying you don’t have anymore scares any time soon!
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Thanks, I have a tremendous support group thank goodness. I have what I call my tribe of women, that are there for me through thick and thin. I am not great at asking for help, small character defect LOL Some are long term friends and some are within the last 10 years or so. I lived in California for a bit, so I made new friends when I came back in 2010.
So this year has been a test in asking for help. At one point my friends were like you cannot catch a break.
I am a huge animal lover and have two cats that are my children, and they are super spoiled. So one got cancer and we had to go to Pittsburgh (from Cleveland) for treatment, my mom got sick and we did hospice and the other cat went into kidney failure. Thank goodness both cats are still alive and doing well so I did not have to lose everyone in one year.
I am glad you are doing well and hope you have something wonderful planned for the holidays.
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Hi @Kathleen Grady; you are doing well with asking for help. It’s never easy, especially from friends. We don’t want to seem needy or insufficient, as some have previously mentioned in discussions about this. You aren’t the only one who struggles with this, my PHriend! I hope that you have that tribe to cheer you on!
Wow, what a year you’ve had, girl! I am thankful that both cats are back and alive and doing well!
But your tribe is right; you certainly deserve a break. Although this season will be tough without your mom, your tribe has supported you. Hugs and prayers that the next year will be much better for you!
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@Kathleen Grady when it rains it pours and it sounds like things have been really stormy for you. As an animal lover myself I was relieved to hear that your cats are still with you. I am so sorry to hear about your mom though! My heart goes out to you.
It sounds like you have supportive friends who worry about you. If they want to help, please let them!
Thinking of you!
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