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I was born with a large hole in the heart that caused me to have PH as a newborn because of the blood shunting in the heart. I had heart surgery to repair my defects just a month after my first birthday. Since then I have learned that congenital heart disease is not something that just goes away with surgery. I have since had a pacemaker implanted because of a syndrome called “sinus node disease” which basically means that the natural beating of the heart is not in sync for me so I am pretty dependent on the work of the pacemaker that helps conduct “normal” beats. I also had a bypass surgery due to vascular abnormalities and had a major heart surgery a few months ago.
I have read a lot of forum users on here who have either electrical abnormalities with their heart, structural heart disease, acquired heart disease because of the pressure being put on the heart, right sided heart enlargement, heart failure etc.
I am being managed for my heart conditions by a specialist in the electrical rhythm of the heart, a cardiologist specializing in congenital heart disease in adults, a vascular surgeon and vascular specialist and cardiac surgery team. It will always be a combo of medications, surgeries, procedures, interventions, and a healthy lifestyle that helps keep me heart as strong as possible.
Who here has co-existing heart conditions either congenital or acquired? How are you being treated and managed for this? Does your PH specialist also work with your cardiac team?
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I have PH with CHF and Diastolic Dysfunction. I also have Hypokalemia because my body can’t retain potassium, magnesium or phosphorus.
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Kimberly, how are these co-exisiting conditions managed with your PH. My son also had serious Long QT Syndrome and it sometimes complicated treatments and made surgeries and procedure that much more risky.
Brittany, my son was always followed by his PH specialist, cardiologist and transplant team and they all worked together to keep him well. His right heart was severely enlarged by the time he was diagnosed and he had Long QT and Mitral Valve Prolapse. Later he went into heart failure and at that time milrinone was added. He was one of their more complicated patients but somehow all of his conditions were managed well together.
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Colleen,
I’m glad they were able to get him managed and work together ! That’s so important, especially finding a care team and center that is good at ALL the above. I’m glad that they continue to do what is best for him. I know it can be hard for providers when there are more than one conditions going on that is contributing to the other/s
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Kimberly,
It really sounds like you have a lot on your plate with all of those conditions. Are they thinking that the CHF is being caused by the PH or did one happen before the other? Sometimes it’s hard to tell because they both put strains on each other and go hand in hand sometimes. That must be hard not being able to absorb those nutrients and electrolytes. What do they do about this? Do you have to get infusions of anything? -
I have PAH and CTEPH. I also have right sided heart failure. I also have central and obstructive apnea. I have sciatica and chronic back pain. I am obese and I am trying to lose weight.
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Christopher, I am so sorry to hear that you are dealing with so many symptoms. My son was also in right heart failure and just like him, it may be contributing to your back pain. Heating packs were his best friend and even electric blankets helped too. It’s summer though and that probably doesn’t sound appealing. The other issue with heart failure is water retention and you might be finding that a challenge while trying to lose weight. Don’t give up on it though. Keep trying to eat healthy and whatever else your doctor gives you permission and advice on doing. I hope as the weather starts to cool down some of your symptoms might improve.
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I am 53yrs. old and was born with transposition of the great arteries. I had corrective surgery when I was 3. I’ve had a pacemaker implanted when I was 10. I’ve taken anti-arrythmic medications since around 6. I have CHF and secondary pulmonary hypertension as complications of my undelying heart condition.
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I have PH as well as congestive heart failure. I first had CHF from living with uncontrolled PH. My CHF has improved but it’s an ongoing struggle. It never really goes away when you love with PH. My heart still shows an enlargement. I take any improvements that I can get.
Before my PH doctor was a pulmonary doctor so I had him and a Cardiologist. Now that my PH doctor is cardiology, my PH team takes care if the PH and heart issues. Their cardiology group has about 25 doctors specializing in many different areas. I feel like I am covered as far as heart issues here, lol
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Jen,
That’s really good that you go to a clinic that covers both. My PH specialist was also a heart failure specialist and cardiologist so it was helpful to talk about both things at one appointment vs going to multiple specialists and trying to tweak medications or something. Do they have you more stable on medications specifically for your heart or do they try to manage the PH and therefore help the heart more? I am on mostly heart medications because my PH is mostly from the heart and vascular issues vs an underlying lung condition-
Yes, it’s easier to address both issues at one appointment. They usually treat my PH more, but as you know the diuretics are part of the regimen for CHF as well. I was on a medication to help regulate my heart for several years but not anymore. That medication didn’t work well with some of my PH medications. I believe it was Amiodarone, I also was taking a blood thinner back then.
Because my PH is controlled better than then, I’m no longer taking those medications. The doctor did say we may revisit this again after my next Echo. This is because of my palpitations and chest pain is visiting more often. I’m hoping it’s just the heat and trying to balance this fluid and extra diuretics.
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Hey Jen,
I’m sorry you are having some palpitations and chest pain. That is so unpleasant and always makes me nervous when I feel pain in the chest because I never know what the source is. Sometimes it is just inflammation, other times I have a cough with it and worry about pneumonia or bronchitis. Other times like you said, it has to do with the weather putting extra stress on the body and just having to work harder through the day. It is hard to tell exactly what is going on and that always just leads to more worry and anxiety (which sometimes increases the chest pain too so it’s a vicious cycle). What are you doing to help relieve some of those symptoms? Hopefully you are a little more comfortable today! -
Thanks, Brittany, I’ve been on the couch. I’m testing with my O2 and taking my Morphine as needed to try and help the chest pain. Yes, it’s so scary and frustrating as we never know the exact cause. My PH doctor did call to check in me yesterday. The plan was to follow the plan and all weekend and if I don’t get any relief, go to the hospital. I prefer to stay home, as long as the meds can offer a little relief.
The worrying and anxiety don’t help, as you know all too well, also.
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Hey Jen,
How are you doing this Monday morning? Wanted to check in with you. I know that your response to this sounds like you have been having a rough time. Do you think that the weather is also impacting this? Personally, the weather made me feel a lot worse this weekend. It increased a lot of the vascular pain that I’m having and also increased my chest pain because I think my heart and lungs just get too tired in these conditions. It is much better to stay inside and rest in the A/C and watch a good movie or show on Netflix or Hulu. How did you pass your time this weekend? Hope you LISTENED to your doctors orders and took your pain medication and just “took it easy” whatever that looks like for you! I know you’re one that probably likes to stay as busy as possible. -
Jen, I’m really sorry to hear that you have been dealing with chest pain! That was always a big symptom for my son. I can remember trips to the hospital with him doubled over in pain. How are you doing today? I know we often delayed going to the hospital because there was rarely anything that could be done but eventually we would always go. If anything, as much as we wanted to be home, the hospital relieved some of the stress. Knowing he was in a place where he could be sufficiently monitored and treated made it less scary. Does that make sense?
I’m probably not helping. Just want to express my concern and hope that you start feeling better this week!
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Colleen,
That makes complete sense to me ! It is unsettling to sit with symptoms when we are in pain and a lot of distress. As much as I don’t like going to the hospital, when I think it is best that I’m monitored, I eventually feel more at ease too knowing that I am in good hands and knowing I’m in a place where it would be the safest IF something were to happen (God forbid) But I totally relate. -
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Colleen, I did talk to my PH nurse this morning and they are wanting to do a left heart cath. Last year, they saw something they wanted to investigate more on my RHC. But, because of my kidneys, I could not have the contrast to do the scan they wanted. My new PH doctor wants to be sure nothing else is going on.
Unfortunately, my kidney function still is the reason we can’t do the scan, so sometime this week, I will be going for the left heart cath. I’ve had both early in its diagnosis, but haven’t had the left side in years. Do y’all have left heart caths or right side only?
My hubby is home again today with me, if the chest pains and palpitations get worse, he will take me to the hospital. That was instructions per my PH nurse, too. I know I rather ” wait it out” at home but if it gets too much, I’ll go to the hospital.
Thanks for the support and concerns.
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Jen,
I am thinking of you through this time. I know it can be hard. Hopefully they are able to get that left heart cath done quickly and will be able to figure out a safe way to do other testing if need be. Waiting around in pain just isn’t fun, especially if we are left to our own devices to manage it. I usually end up not taking ENOUGH or getting paranoid about taking medications for pain that I end up doing myself a disservice. I hope that you are able to stay as comfortable as possible right now. You need to just rest and let others take care of you right now. I know it is hard to just feel like this. Stay distracted with positive distractions (and if that includes being on the forums then type it ALL OUT!) you can do this ! Keep us updated on what they say! -
I have had two right heart cath’s. My third will be this September. This one will go along with the usual tests. This is to see if I need a third med which will be uptravi if it’s needed. I have had a minor miracle in that within this last year my CHF and enlarged right side of my heart has not only gone back to normal size my CHF has subsided my Dr’s say. My pressure in my last right heart cath was 35 down from 52. My main issue is i am struggling with losing weight. I have lost 80-100 lbs and I keep yo-yoing a bit. I need to keep losing weight.
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Christopher,
Wow it seems like you have put in tons of work to try to be in the best health possible! 100 lbs really is a lot to have lost but I know that with a lot of weight loss there comes a point where you reach a plateau or begin to yo yo back and forth either up more or down some and then back again. Getting over this hump of weight loss will happen for you. Especially if you continue to stay as motivated to get better as you seem. Are you also working with a dietician? Perhaps someone that is familiar with the medications that you are on for your heart and lungs too? -
Thanks, Brittany, I’ve been resting mostly. Today, I thought I would help make dinner, but of course, my hubby is helping.
I am on the schedule to have the left heart cath(LHC) Thursday. Supposedly in the morning, but the cath lab will call me tomorrow to let me know what time we need to be there.
Thanks for the support as always 🤗
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Jen,
I am so glad they were able to get you in so quickly for that! I will be thinking of you on Thursday and please keep us posted. you are such a big part of this community and I’m sure everyone will be anxious to hear about how you did. Feel free to private message me if you would like or if you need someone to talk to. Always here for you and hoping for the best and that they can figure this out and get you feeling a little better! (fingers crossed) sending you all the good vibes! -
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Hi @jenc, I only remember right heart caths. How are you doing today? I’ve been thinking of you and wondering if you ended up taking a trip to the hospital.
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Hi @colleensteele, thanks for checking on me. I’m still at home, taking the pain meds and resting mostly. My LHC is scheduled Thursday.
I am on the schedule to have the left heart cath(LHC) Thursday. Supposedly in the morning, but the cath lab will call me tomorrow to let me know what time we need to be there.
Thanks again, I appreciate the support 🤗
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Thanks, Colleen, I appreciate the positive thoughts and prayers.
It’s difficult to try and figure out the cause at times. The pain can be ” just PH”, inflammation, or something else. My hope is that we get answers and a solution to help this ongoing chest pain and palpitations. Maybe something else that will work better for the pain, too, would be great.
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Jen, you said that you are in heart failure, is that correct? Has your team discussed maybe putting you on IV Milrinone? That helped my son a lot. My other suggestion that sounds so simple but really helped him is when I would very gently rub his back. I think it would help relax and distract him from the chest discomfort. It would also sometimes help him fall asleep when struggling during the night.
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Colleen, they actually mentioned the IV Milrinone early in my PH journey, my CHF was worse back then. The issue for me us that my blood pressure has always been low. They decided it would drop too low so that’s an option.
Back rubs and shoulder rubs are helpful. I tend to have back and shoulder pain. It’s a ” free” side that comes along with the chest pain and palpitations. I have been using a warm pack too. Thanks for the tips, I’ll have my hubby rub me down after he’s home and rested from work.
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Jen,
I hope you were able to get that much needed back rub! I am thinking of you and know that you were in for your cath today ! my thoughts and positive wishes are definitely sent your way. Please be sure to keep us updated when you are feeling up to it. I hope for the best possible outcome and if worst case scenario and you get some crummy news, just know that we are always here for you and have your back! (Can’t exactly do the back rubs like your hubby can, but we can be there emotionally for you!) -
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Jen I totally can get it. It’s hard to really be a judge of where the pain is coming from and what’s causing it. That is always something that is a concern for me. Like, “is this a new thing or is this just part of what I have?” I HATE when they say something like “this is just how you are”… like “okay, then how are we going to MANAGE it so I have some better quality of life?” Pain management is so important, not only for physical comfort but for mental health too.
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I’m struggling to know how or where to reply on this forum. This isn’t an easy site to navigate, or maybe it’s just user error?! LOL
Jen, I have only had two heat caths about nine years ago. It seems as if I’ve been lucky. My symptoms don’t seem to change except my edema is a constant dance with my kidney functions. I’m pretty much in stable state, with slight fluctuations. I just get frustrated that good care is at my fingertips but elusive! I’ll be talking to insurance after the beginning of the year. It frustrates me so much and I get such panic over seeing Drs that I keep avoiding them also.
I have rescheduled my heart dr three times! I’m now overdue by 18 months to get my yearly exam. Does anyone else suffer anxiety about dr visits?? I’m terrible about going in. Even my regular physician! I’ve needed blood work done for 9 months and I’ve still managed to put it off. THIS area of being scared to see my maintenance drs frustrates me. Why is it so hard to go see my physicians? -
Hi Beth,
I completely understand your struggles when it comes to doctor visits and anxiety. It is hard especially when you are trying to avoid any possible bad news or upcoming testing or procedures that seem inevitable. It is like the body goes into a state of flight or fight and the anxiety response would be to take “flight” as an option and avoid or run from the situation all together. It is important that you can recognize this anxiety within yourself though and know that it is what is keeping you from going to the appointment. I would also bring this up with your doctors and maybe they can help prescribe something to you for this and it will at least be something you could take before visits when you are feeling like you want to not go. -
Real quick here, running to pharmacy. Thank you. Yes, I do recognize it. I go in waves but I have confronted myself many times wkth a”personal intervention”!
I can’t take anything for anxiety. I used to take Xanax or Valium. I chose to get off pain medication after ten years of it prescribed and mostly too much prescribed; I use suboxone for the post withdrawal symptoms and diazepam type drugs are not good for this combination. Oh I’d love to use them as needed, but not for a very long time. I was never addicted psychologically but after 10 years of course my body was.
That’s a medical choice I feel pride about. Now I tackle this one! -
Beth,
Wow, thank you for sharing that. It is amazing hiw you were able to physically get through that period of your life when your body was withdrawing from the medication. As someone who has been taking pain medication for the past year due to very severe pain with tube feeding, I know what you mean by your body being dependent on them after awhile, even when it’s not a psychological “addiction” there is still a degree of physical dependency and your body needs to heal from that too. Do you do any natural remedies or reliefs for anxiety like doing meditation, coloring, yoga, reading, things that maybe help you unwind and clear your mind? -
Well, it took almost a year to get off benzos. The after effect of slow or fast withdrawal is extreme manifestation of anxiety. It’s awful. My bipolar has been effectively in remission now for three years or I would have never tried going off opiates or benzos
Remission means to me: no major mood episodes ( hypomania or depression).
I have tried mindful breathing during the worse anxiety. I found once I stopped taking benzos and was through the post withdrawal anxiety, I had very little anxiety left. I was off benzos for six months when I realized this. This was done with a drs help also.
I took the meds too often for too long. I wasn’t abusing them but I learned they are best tolerated and efficacious when only used for 12-16 weeks. But I do understand everyone is different.
I do have anxiety about dr visits but it’s no longer the panic-type anxiety. I’m just avoiding…maybe it’s just a learned habit. Hmmm, something for me to look at.
My anxiety wasn’t helped by anything but medication when I’d have extended anxiety attacks along with panic attacks. Btw: I’d rather have a baby ( I had all 4 of them at home) than experience a true panic or prolonged anxiety attack! I’m serious! LOL
Mindful breathing helps a lot with minor anxiety. I did not give meditation a real chance. My son is a spiritual guider in meditation but I’ve just not given my all in that arena.
Honestly I’m not sure why I’m much freer from anxiety than I used to be. I’ve many times have wondered if the pain medication made my anxiety so bad. Bipolar have different reactions with opiates. We feel extreme energy, that eventually becomes confusion, irritability, rigid beliefs, anger…pretty much a hypomanic state. It’s truly not something I believe I should be on. I never felt sedation or sleepiness, I felt energized and grandiose, Hugh high feelings of invincibility.
So, I think coming off opiates and then tackling Valium and Xanax has been a true healing force for me.But if I ever have a panic attack in an airplane, 10,000 feet above ground that switches into paralyzing prolonged anxiety attacks, I’ll be On Xanax in a heartbeat! Lol. Last time it lasted four weeks. It wasn’t a pretty picture. I’m sure many people can relate.
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Beth,
Thank you so much for sharing all of this. I am sure that many can relate to what you are going through and have been through, especially with trying to get off certain medications like opiates and benzos. That is such a difficult combination to be on too and when mixed together can have serious effects on respiration and breathing. I also find that when I take opiates or when I am coming off of anesthesia that has used opiates as part of the sedation, I get extremely agitated. I either get mad and angry or sad an confused and cry a lot more than usual. Anxiety that severe is one of the worst things to deal with. I have had a lot of avoidance behaviors because of my PTSD and just trying to stay away from situations that are triggering all together (even at the risk of my own health) It is scary how extreme it can get. -
Hi Beth, I am sorry that you are having a tough time navigating the site. I hope that you are getting familiar with t and it comes a little easier for you now.
I am sorry that you are dealing with so much anxiety. I, too suffer from anxiety. I take meds to help me. I often start fighting in the seat, my palms get sweaty and I can’t relax when headed to appointments. For me, this is usually when I have tests or see my PH doctor since they are across the street from the hospital. Too many negative experiences there. I think it is more of a feeling of the unknown. Mostly like, will they keep me?
I hope that you can get in soon, 18 months is a long time without seeing the heart doctors. I hope that they can also help with your anxiety, some.
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Yes Jen, I saw that. I’m so sorry!! I have periformis syndrome, and neuropathy in my feet. I’m not able to take anything besides morphine or Tylenol due to kidneys. I understand that kind of pain. Fortunately suboxone is a different kind of pain med and it helps about 70% of my pain usually.
I may have to go back on opiates at some point but for now It’s ok. The pain you are experiencing from a feeding tube, wow that sounds pretty bad. Can you tell me why you need a feeding tube? -
Hi Beth,
For the feeding tube there are a few thing going on with my GI system currently. I had a major open heart surgery through thoracotomy in May of this past year. For 28 years of my life I had severe compression of my esophogus caused by a congenital heart defect called a vascular ring that was causing compression of my trachea and esophogus to the point where the esophogus lost motility in it on its own and has to rely on gravity to get things down. Once it reaches my stomach, there has been vagus nerve damage from the surgery and nerve damage from months and months of vomiting. My stomach has slow motility in it as well as my large intestines and colons due to not being born with the proper nerves that control the bowels (it is part of a condition called currarino syndrome that I was born with).
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I am new here!
I am scared and so confused over this new diagnois off of my Echogram.
findings:
moderate mitral valve reg.
Mild LA dilation
Mitral valve prolapse
and moderate Pulmonary Hypertensionalso have these related symptoms, sleep apnea, low iron (anemia) on top of everything else so I have no clue what is causing the PH if it is LHD, group 2 (which seems the scariest to me with low hope) need some reassurance here! I keep readying statistics and research studies how death is the highest in the group with no approval treatment? please tell me that is wrong?
I could be part of group three due to sleep apnea or group 1 due to stupid diet pills back in the 80’s and 90’s but I am pretty sure its PH due to LHD my right side pressure is 40 which is moderate ph.
Symptoms:
edges of lips blue (for many years)
left ankle swelling
skipping and extra heart beat
burning and dull pains around the heart
dizziness
but not really out of breathe although I am morbidity obese (which I had gastric bypass and regained the weight back)sorry just scared, lost, angry and confused and I am a single parent with a five year old. I dont know what I am looking for here. Maybe some hope, comfort and support! Any advise would be great.
sorry for the long rant by my cardio is in Russian and the ECHO came back he signed off of it along with my pcp without notifying me of the findings. I found out through Mychart on the hospital website that I have moderate pulmonary Hypertension, I dont understand why my cardio would have saw the report and my pcp and not tell me the next step. I dont see him until the 29th of this month…. but I got proactively and got another cardio who specializes in my symptoms and condition for the 24th of this month.
I am just so afraid he is going to say sorry there is nothing we can do for you!
I am researching this disease almost every waking hour right now and it gets so confusing and scary. I just need some friends and suggestions! other than to stop googling, its just my nature I dont trust doctors to do the right thing.-
Hi Mandy,
I really empathize with what you are going through right now. I know that it feels like a lot to digest and take in and that’s because it IS A LOT to take in and have on your plate. The symptoms that you are sharing with us are definitely ones that would be unsettling, especially if you aren’t sure what is contributing to the problems. I also have a form of sleep apnea that happens during the day too called central apnea. I am supposed to be wearing a bipap for it. Are you using any type of breathing assistance at night or during the day like oxygen or cpap or bipap therapy? I think that the good things to focus on right now is that you have an upcoming appointment which will hopefully get you closer to some type of plan to get this more stable for you and make sense of what is going on. It is hard to be in this area of the unknown, but I am confident that with more answers you will feel more at ease knowing what you CAN do about all of this. In the beginning it is normal to feel like everything is beyond our control, but when you get a diagnosis you will learn that there are some things that we DO HAVE control over. We are all here for you! -
Hi Mandy, I just want to check in and see how you are doing. As all of us know and understand, the initial diagnosis is so scary and overwhelming. It’s difficult to do but try and make some time throughout the day to do things that, if not take your mind off of things, at least help you to relax. Update us when you feel up to it. In the meantime, I am thinking of you.
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I also have heart disease as the cause for my PH. I was born with ASD, VSD, pulmonary stenosis, pulmonary atresia, dextacardia, situs inversus, congenitally corrected transposition of the great arteries, absent pulmonary artery corrected by surgery with a shunt, absent pulmonary valve, pulmonary and tricuspid valve regurgitation at around 30% , and now PH. I’ve had 8 surgeries thus far. Two open heart, 4 ballooning angioplasties for the PH, one gallbladder removal and 1 heart cath to replace leaking pulmonary valve. Pulmonary ballooning will always be part of my PH treatment as I am not a candidate for any medication on the market. I will also likely have to have my Melody valve (replacement for the pulmonary valve) replaced AGAIN in 3 to 5 years because they do wear out.
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Hey Libby,
I can see why that is your main line of treatment, just wish you didn’t have to go through procedures every time to be treated for this ! It is hard to have to just “wait and see ” with grafts or valves because you know that eventually a lot of them will need to be replaced. They are watching my subclavian artery graft because it has over 50% narrowing in it. They keep a close eye on it with ultrasound every 6 months and I am just waiting for the day it needs to be replaced because that was a HELL of a surgery to go through. With CHD these things are unfortunately in the back of our minds a lot. I’m glad there is someone else on here with similar CHD that I can relate to. I know it’s tough! -
I have both obstructive and central apneas. I have never heard of day time central apnea. Mine is when I try to sleep. I say try because I now hate my Bipap as it no longer really works. My pressure prescription is nearly as high as the machine will go and it’s annoying. So I have to ramp up the pressure and it’s just not comfy at all. In fact it was amazing for 6 months then for the last year I just hate it…
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Wow @christopher-cassata-bobby-shows, you definitely are dealing with several health issues. Although, it sounds like you’re working hard to improve some of these health issues. That is an awesome job with your weight-loss, despite your many health issues.
I’m sorry to hear that you’re still struggling with multiple pain issues as well. Have you noticed any decrease in the back and sciatica pain since this weight-loss?
I know you mentioned in another comment about issues with your sleep apnea, has that improved at all for you?
I hope that you continue to stay motivated as you have been, you will continue to lose weight. I think all of us who need to lose or gain weight, come to a stalling point. Often, it is just something simple to help us over that point. Have you found that?
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That’s exactly right Brittany! I hate the ‘wait and see’ approach too only because you know it’s inevitable and all the well-wishers in my life always tell me ‘maybe you’ll never need it done! Maybe your valve will last forever’. Honestly I hate it when people try to be positive about my health issues, only because it feels like a minimization when to me, it’s basically a waiting game for a looming surgery.
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Libby,
That response frustrates me too! or after the CHD surgeries .. “so, no more! you’re done!” like hahahahaha whattttttt????? I just always make sure to tell people before hand “this is not a permanent fix and I need like probably 10 more surgeries in my lifetime that require full sedation” so no, it’s never “done” . I can tell the people who DON’T have chronic health conditions that require surgeries and repairs by their responses. I wouldn’t wish my conditions on anyone, but that’s one piece I wish people would learn to understand and ACCEPT! Without other people accepting it, it makes it harder for me to do it. -
Libby, it’s awful when others try to minimize your health issues, I, too, have this feeling often and remind myself that these same people don’t live in our bodies and have no clue what we deal with every day. That doesn’t make us feel any better.
Maybe some of y’all will relate to this column post from our very own loved, Brittany.
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Thank you so much for sharing the link to one of my columns , Jen! That is always my goal when writing these columns is to share with others because I KNOW I’m not the only one who experiences these things. I hope they help to give others a voice and to speak up for their medical care and their body!
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Yes Libby that’s how it feels to me also, it’s like it’s easy for them to say. They have never lost their breath walking to the bathroom.
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Oh, your detailed questions and answers once again reminded me how little I know and understand about medicine and about my own illness in general.
Since my childhood I was put “congenital heart disease: mitral valve prolapse”. This phrase was always my answer to the doctor’s questions, until they put PH (it’s was also made by a cardiologist). Therefore, I have been observed only by a cardiologist all my life. I’ve been to two or three different pulmonologists, but it wasn’t good. So my “PH team” are my cardiologist and ultrasound doctor. I still do not understand exactly what “prolapse” is, how it all looks and where it came from.
And, yes, we are all very lucky that we are all here despite the PH and many related diagnoses. I’m surprised and very glad!-
I’m glad that you’re here too! Were you give this diagnosis of mitral valve prolapse just recently or did you have it as a child too and that is why they are saying it is a congenital heart defect? Just curious because a lot of times when defects go undetected or untreated, depending on what the defect is, it can lead to PH. Here is some information from the Mayo Clinic (highly regarded hospital) about mitral valve prolapse if you wanted to take a look at it and read up about it.
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Brittany, thanks for the link! I read the article, and I think I’ll go through the clinic’s website. My prolapse was diagnosed right after I was born. No operations and such a never offered. Prolapse (seemingly) regard as the cause of hypertension (but I’m not sure). Once the doctor was explaining something about the fact that I have intertwined (and grown together, and between them a hole), two vessels coming from the heart (maybe artery and aorta?). I can’t say anything about it for sure. The explanation was complicated, and I was just scared and didn’t listen to half the words.
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Maybe I’m a little confused about what doctors write. The “interweaving of vessels” I wrote about is a “defect of the aorto-pulmonary septum” (I’m not sure if this is true in English). I searched for information about this, it is “the presence of the hole through which the aorta and the pulmonary artery trunk communicate with each other.” It is also a rare congenital heart disease and is the cause of hypertension. By the way, this diagnosis I also received only when I was about 20 years old, although (apparently) it was from birth.
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Valerie,
I know how this can feel when you are having things explained to you and it seems like everything that you are hearing is one big blur of information. it really helps me when I take someone to these appointments with me. You could also think about asking your doctor if you could record (maybe an audio recording with you phone) about what they’re saying so that way you can refer back to it and you won’t miss too much. Do you take other people with you when you go? Always helps to have any extra set of ears . -
Brittany, “one big blur of information” is a very precise definition. My mother goes to the doctor’s office with me, but she is too worried about me to listen to the information calmly and objectively. It’s not a bad idea to use an audio recording during a visit to the doctor. “I’m sorry, I’ll listen to your words later, when I become sane”. I imagine the doctors will be surprised at such a strange patient, lol.
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Valerie, I had to laugh as I often think my medical team thinks that I am the ” strangest ” patient yet, lol
You are NOT alone! I think that Brittany and Colleen offer some great tips.
Some doctor appointments( well, most) can be overwhelming, to say the least, but I promised your doctors are accustomed to questions, nerves, anxiety, and tears.
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Hi Valerie, I’m familiar with mitral valve prolapse because my son had it before transplant. He was actually diagnosed with the and Long QT Syndrome 2 years before being diagnosed with the PH. I was also have both…or so I thought. I also have both of these but in a much milder form than my son did. I was on a beta blocker for years for the mitral valve prolapse but only for my comfort because I would occasionally have some chest discomfort. Later I decided to go off of it because my condition was so mild and the medication was making me very tired.
Everyone is different but for my son, the mitral valve prolapse was at the bottom of the worry list. The Long QT and PH always took everyone’s full attention. He was on a beta blocker for both the mitral valve and Long QT and I know that they did consider both conditions before starting any new medications.
If you feel that you need more information about your mitral valve prolapse diagnosis there is nothing wrong with asking a doctor or nurse to go over it again. You can also ask them if they have a brochure on it that they can share with you.
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Colleen,
So true ! Brochures of a handout is always a good idea especially something that you can take home with you and go over after and digest a little bit at a a time. It’s too much to take in everything all at once. Pictures always helps me too and a print out of information so I can go over things and show others if they have any questions -
Colleen, I think for me (as for your son) prolapse is the last item on the list for concern. Especially when I am among those “lucky” who are lucky to have a rare defect of the aorto-pulmonary septum. I don’t think my doctors have any pamphlets, or even time to explain. To be honest, I’ve been trying not to ask them any questions or tell them a lot of details lately, because self-pity makes me look like a pathetic, sobbing, and poorly thinking patient. It takes too much courage to talk calmly and thoroughly with a doctor. As you know, I’m not very good at this.
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Valerie, I understand but also am sad that you feel that way. A good doctor will listen to and support their patient whether calm or crying. Some doctors or nurses are fine with their patient’s emailing them. Maybe they will allow you to ask your questions and express some concerns in that manner. That way you have their response in writing which might help you better understand what they are saying.
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I HAD a Mitral Prolapse for several years. It ended up going bad on me in 2014 and had a Mech Valve Replacement (MVR). Anyway within two years of that I developed Pulmonary Hypertension AND sleep Apnea. I had a sleep study in ’09 and in the hospital prior to my MVR with neg results on Apnea. Sooo PAH and Apnea secondary to the MVR I guess.
My Cardio Doc says my PAH is severe but so far I am going to the gym regularly and although it is a struggle I’m not dying, just working slower than the rest of the kids.
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Thanks for sharing your experience Jay. I know Mitral Valve Prolapse can be more problematic in others. How did you feel after the Mech Valve Replacement? I was diagnosed with Mitral Valve Prolapse as a teenager. I’m in my late 40’s and my new cardiologist recently told me he doesn’t think I have prolapse. The chest discomfort that I experience he believes to be more a symptom of the Long QT that I definitely have.
My son who had PH had both for certain but the Long QT was much worse and concerning for him. Luckily the Prolapse seemed to remain stable on beta blockers.
I’m sorry to hear that your PAH is severe. A common thing you will hear among PHers is despite how sick they are, they still manage some activity. I think the body gets so use to feeling a certain way that it makes you feel capable of forging ahead. I think it’s great that you still frequent the gym and I’m sure you have learned how to safely pace yourself. What PH treatments are you on?
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Hi Colleen,
Post op I had excellent results for nearly two years. I was on an Elk hunt up at 7500ft + altitude with my son and after he had killed an elk we were hiking out with the meat. I could only go ten ft at a time and I felt like someone stabbed me in my lungs, but my heart was working AOK.
Fast fwd done with a week of hunting (I have my priorities) went back to the Cardiologist and ended up with this diagnosis. I was pretty listless for a while as it was kind of a sudden onset. Got the CPAP after that and improved some. I am still very active, but along with my heart getting worse and struggling for air at times, it feels like I am checking out. I assume that is a normal feeling.
Anyway- yea going to the gym and still very outdoorsy so far. At the rate this is progressing which I think is actually slow I cant imagine the level of activity I am doing now being possible in a few years.
Meds/treatments? None. Im trying to get revatio (more for another issue 🙁 , but Im sure Id feel much better), but my cardiologist thinks that is a bit pre-mature given my current physical capabilities.
I do feel very fortunate I can still do most what I want, but we all know the road this leads to eventually. In the meantime- playtime.
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Jay, I would recommend more conversation with your doctor about starting PH treatment. The benefit of early diagnosis is to start treatments as soon as possible to delay progression. It’s great that you are able to be active but it sounds like you are experiencing an increase in symptoms. Have you considered a 2nd opinion?
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Hi Jay,
I’m so sorry to hear about that surgery. Unfortunately, sometimes surgeries to fix one thing may end up causing problems elsewhere and it seems like a never ending battle. I am going through some similar things after my last surgery. I went in for them to fix something with my heart and aorta and this ended up shifting the pressures around a little in the heart and doing some damage to surrounding nerves. This was unforeseen-
Agreed- If I passed up on the MVR I would have been dead within a week or two so I got lucky. Im on the slow train now, but at least can take in the scenery right?
That is a total bummer about the complications- hopefully the nerves mend. Although nervs rarely heal right or very quickly I had broken my back several years ago and my right leg suffered a lot of nerve damage as a result. About half of the damage reversed itself so there is hope.
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I have had 2 open-heart surgeries, 1 in 1999 when I was 49, the other in 2012 when I was 72, the second one at 72 I had a leaky Aortic Heart valve so that had to be replaced. It was a very long, life-threatening surgery. I was in the hospital the second time for 40 days and then had to return a weak later for 7 days. They could not get the heart rhythm right. They tried everything including 3 groin ablations and draining my lungs. I left with mild AFIBwhich I controlled with Medicine. I can honestly say I was never right after that second surgery. I have lasted to this point at 78 yrs old, but one year ago diagnosed with PH. I fully believe the lung issue with PH was always thereafter that surgery, just never diagnosed. Now a year later I am definitely feeling the PH taking me down. I am weaker every day and some days it is impossible, except with my severe back injury, I am weak in the legs which compound the weakness from PH. I am tired of living alone and suffering so now I have full home health care with the state of texas, supplying me with PY, Occupational, and Nurses and some home cleaning and laundry help as I have exhausted my savings and now on Medicare and Medicaid. I have a terrific social worker who has shown me how to maximize my benefits. I actually now need help showering and some cooking and happily, they do my Laundry, change the bed and other cleaning tasks. I would think I am now on the Ladder of steps going down, as I am 78. I take 15 medications and insulin also, and Texas gives me a program where I pay $3,35 for every RX no matter the type. I feel lucky I landed here after losing everything in Hurricane Irma, I did not know at the time I would be next to UT Southwestern which is a world-renowned PH clinic but to be honest they diagnosed it and gave me water pills bu that was the end of their support. Perhaps if I go down further to that ugly point of the bottom rung of the ladder, I will be happy to have them I am on a CPAP with oxygen, so needless to say it’s not easy, but that just fine because life never ends well when we come to the end of our lives. I have many people I care about here and when I saw the topic, wanted to bring my lovely friend’s op to date. God Bless each and one of you, and Brittnay I hope your progress, I think of you daily Ron
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It’s always good to hear from you Ron! I didn’t know your full story and I am overwhelmed by all that you have been through, including losing everything in Hurricane Irma. It made me sad to think of you feeling alone and sick and I am so glad to hear that now you are receiving more assistance. Social workers can be such a great source of support, I know we have greatly appreciated ours. I will keep you in my prayers and hope that you continue to check in with us when you can.
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Following my echo last week, I found out that I have left ventricle diastolic heart failure in addition to the Pulmonary Hypertension. They also said the PH at rest was 67, not the 39 that I’d been told.
So now I’m on a boatload of heart meds. Thank you all who are sharing here. It really helps.
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Sarah,
I am glad that your voices and all of our personal experiences have helped you to get a better understanding and hopefully feel less alone. I know it is hard to start on different medications especially when you know the reasoning behind why you are taking them. It can be really scary at first, but I know that with time you will get used to this being your “new normal” and you will be able to adjust better. We are always here for you for support.
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@jonb I am similar to you too. I had open heart surgery a few times in my life as well as a pacemaker implanted at 21. No as young as you were when you had yours, but still young for medical standards and average age that most people get a pacemaker. Have you been on the same types of medications since you were younger or have these medications and the treatment plan changed for you? Are you oxygen levels lower too because of your heart condition you were born with?
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Congestive heart failure, enlarged left chamber, Blood Pressure. It seems that PH contributes to heart issues.
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Jimi,
Based on my own personal experience, one definitely can contribute to the other. This is why it is so important to get echos, MRI of the heart, scans, heart caths etc and to make sure that those of us who are taking heart medication continue to be monitored by both a cardiologist as well as a PH specialist. Do you have both specialists too? -
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I’ve been a member for a year but have never posted. I’ve been inspired by reading so many stories of courage and hope. I have Pulmonary Hypertension with Heart Failure with Preserved Ejection Fraction and am in a clinical trial for the drug Levosimendan. I was wondering if anyone else is taking this medication?
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Hi @nancyf, it’s been a while since you’ve posted. I wanted to check in and see how well you did on the clinical trial for Levosimendan. How are you doing, and did you see any improvements taking this? This is approved for short-term treatment, from what I read.
@brendad53, this may offer some insight on heart failure. I’m not trying to add to your diagnosis; I just wanted you to read some who have shared their experiences with PH and heart failure. -
I came across this while scrolling on LinkedIn this morning. It’s helpful information by Bayer Pharmaceuticals about congestive heart failure (CHF). Check it out if you’re also dealing with CHF with PH. They offer other resources with reliable data on their website.
@libby, @valeriekv, @nancyf, @sarah, @texas2018, @icepick7500, how are y’all doing? I haven’t seen you here recently and wanted to check in.-
@jenc
Hi! I’m here!
I feel better than at the beginning of the year, but I still don’t see very well. In addition, in addition to sildenafil, I am now also taking medication for multiple sclerosis. This medicine is one of the safest for me (these are pills, not gelatin capsules or injections), but I am tormented by side effects. In addition, fatigue from MS was added to fatigue from PH. So my “spoons” end quickly and I have to rest more often. But there’s nothing I can do about it.
Some of the participants haven’t been here for a long time, like me? I hope they are doing well!-
@valeriekv it is good to hear from you but it’s a shame to hear that you have added challenges. How are you managing emotionally with all that you are dealing with physically? What helps distract you from your illnesses and makes you happy?
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Hi @valeriekv, it’s great to see your update, but sorry about your MS complications, and your eyes continue to worsen. Which MS treatment are you taking? Is it one of the newer ones? Did I already share our MS News Today website and podcast hosted by a good friend, Jenn Powell? Crazy, when I went to that website to share with you, the column at the top of the page was titled, How I’m Making the Most of My Limited Energy as Someone With MS.
What support do you have, Valerie, and what things have you been doing besides reading since you’ve been experiencing so much trouble with your eyes?
I’m sending you positive thoughts, hugs, and prayers. At least it should have warmed up there by now, right? Does that help?
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Hi all!
@colleen
To be honest, I’m not coping well emotionally. It’s not easy to get distracted from diseases. It’s like a ninja is stalking me with a club and constantly bludgeoning me! Mostly I am distracted by TV shows (only recently I got on “Ghost Whisperer” 🙂), needlework and soothing tea 🙂.
Yes, you have already mentioned the MS News website. This is a great site, I often read articles there.
I am taking a medicine similar to “Aubagio”. Unfortunately, since I’m getting a generic drug, it has more side effects.
I listen to audiobooks, try to take care of house plants, cook food. Sometimes I walk. Vision has not deteriorated, it is sometimes (more often in the evening) almost completely good. And yes, it’s getting warmer, but I’m not happy about summer. Everything is very beautiful around, there are a lot of green trees and flowers. But last summer it was TOO hot for four months! That’s what made me feel so bad. I was unbearably hot and lacked oxygen. Oxygen therapy (I don’t really understand this, I mean oxygen cylinders and devices on wheels) is not used in our country. So I was glad when autumn came last year! I just can’t imagine how you’re coping with the heat of San Diego!
Thank you both for your positive thoughts and wishes, it is very valuable to me!
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Hi @valeriekv, I thought I had shared that site but then not so sure; hehe.
I’m sorry you have such harsh side effects with the new MS treatment. How long have you been taking it? Have the side effects started subsiding at all for you since your first dosage?
It sounds like your vast of hobbies keeps you busy. I’m happy that your vision hasn’t worsened. My apologies; I read that incorrectly. I know you enjoy reading, so happy you can listen to audiobooks. IDK why, but I can’t seem to adjust to audiobooks. But, I’m also one who has difficulty reading some on Kindle versus a book in hand.
I didn’t realize the summers were so hot there. What are your average summer temperatures? San Diego is usually relatively mild. But it turned 80 yesterday and today, and tomorrow may be a tad warmer. Highs are expected to be 84.
Fall and Autumn are my favorite seasons, along with Spring, minus the allergies. The cold air burns my lungs. It sounds like you like somewhere in between, like me, hehe.
Thanks for the update, and take care of yourself.
Hi @auntlizzie, how are you doing? Thanks for sharing your experience with Valerie. We all have unique experiences since our bodies react so differently. Take care, and hugs to you.
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I’m sorry, I probably don’t express myself very correctly in English 🙂
Side effects began a week after the start of taking the medication. Itchy skin and occasionally (at first very frightening) shortness of breath. Sometimes I’m like Sirius Black after turning from a dog into a man 🙂
I thought you were putting up with the higher heat in San Diego! For example, 95 degrees. We normally have 80 degrees in summer, but last summer the temperature rose to 110 degrees! Besides, the windows of my apartment are under the sun all day. I literally had nothing to breathe, my oxygen was not very high even at night. Now I hope that the air conditioner will save me. I really like something in between, like you!
You take care of yourself, too! Our keymasters are very valuable to all of us 🙂
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Hi @valeriekv, your English is excellent; it’s probably me.Hehe.
Is the itchy skin and shortness of breath continuing to be an issue for you with this new treatment for MS? Increased shortness of breath would undoubtedly be frightening on top of PH.
Oh, no, the temps in San Diego are much milder than in Texas, where I was. I didn’t realize your summers could be so dang hot, 110! That is hot for anyone. Hopefully, your highs will be 80, and the high 70s will be better. This weekend we reached 82 -84 degrees. Texas was 98, already with humidity. I tell everyone that I miss many things about Texas; the heat and humidity are def not one of them.
Thanks for your kind words. I am so happy to know you find the forums valuable. Take care and use that AC when needed.
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Hi Valerie – I’d like to add a suggetion here. Check out the Mayoclinic.org website for sildenafil and tadalafil. Side effects can be vision problems. I don’t know what your vision problems are exactly. I have resisted any suggestion to take these meds. Everything gives me side effects often worse than my condition. You also mentioned somewhere that you were using generic drugs but these should not cause side effects – they are meant to be the same as mainline brands. We are heading into Winter now in Australia – Brrrrr.
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It’s great that you have winter! This is very cool (only there are no flowers)!
Oh, yes, the Mayo Clinic is really very advanced. I even have a medical directory of the Mayo Clinic. But my problems are not related to my eyes or sildenafil, because multiple sclerosis is to blame for this. Unfortunately, my brain doesn’t get the right data from my eyes. The generic drug that I receive is different from the original drug. Many people who also get it note a greater number of side effects. When they took the original medicine, they felt better. The generic grug has a different formulation, excipients, etc. Therefore, there were problems with the MS medication. To combat my PH, I took revacio. But now I’m tolerating the revacio analogue quite well. Why didn’t you take sildenafil?
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As luck would have it, I too have what we here in Australia call – Sick Sinus Syndrome. That wasn’t picked up until a year after my PH diagnosis in 2013, but I suspect I’d had the SSS a lot longer than that, and coupled with a bad case of Shigella dysentery in 1984 it was probably what caused my PH. My Pacemaker keeps things pretty well on track now – usually.
I’ve just had my 4th COVID shot and have been told I can access the antivirals if I get COVID, but does that make me any more relaxed? It does not. Whenever I get sick, my heart goes haywire for a time. So I mask up, sanitise and so forth. I even did my 6 Minute Walk today, wearing an N95 Mask – talk about being breathless, but I managed 492 meters. I was singing St Louis Blues in Swingtime in my mind to keep up the pace. Stay well. Cheers.-
Hi @auntlizzie, you did excellent with that N95 mask on during your 6-minute walk test. Way to get into the “swing” of things! Hehe. What did your PH team say overall? Did you get a good report?
It sounds like your pacemaker certainly makes a difference. But I can imagine how crazy your heart gets with any little thing off with your body. With PH, my heart goes crazy with little stress and any minor illness, so I’m grateful that when I had COVID, it didn’t seem to damage my heart.
One day at a time, right? Thanks for updating us, and stay well, my Aussie PHriend.
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Brittany (and others), I’ve had people here warn me about pushing myself when I feel like poo. Once or twice someone has said something about a heart issue. Like if I push too hard when I feel bad, it could cause heart problems. Is that right?
I ran errands two days ago. Total of about 45 minutes on my feet, interspersed with six periods of sitting and just driving. Still, I was about in tears by the time I had finished the last errand. I was beyond exhausted.
Yesterday I stood up a lot at my center island, trimming photos and arranging them in my grandkids’ school memories books. On my feet for several hours, with a long rest period in between the two books.
Today I feel like poo warmed over. And I wonder how this can possibly be caused by PH alone? Is it possible that I have a heart problem? Nothing ever shows up on ECG or echo…at least, nothing consistent and sure. How do you, Brittany and others, distinguish between PH symptoms and heart symptoms? How do you separate them out?
Today is a wonderful, gorgeous, AMAZING day in NC for this time of year. A good day to get stuff done outdoors without melting into a pool of humid sweat. But I’m not feeling up to doing much of anything. I’m so frustrated.
Words of cardiac wisdom? Experience? Thanks.
I will return to my solitary pouting, now.
Brenda
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Hi, @brendad53, yeah, overdoing it and pushing your body if you already have heart disease can worsen the heart issues. But the symptoms you are feeling can also be PH symptoms alone.
I, too, often learn the hard way that I must listen to my body better and take it slower. Unfortunately, I only have 2 speeds, “go,” which is full speed or “no go,” LOL.
How are you feeling this week? Please take your time and enjoy the beautiful weather in NC. I’m sending you extra hugs this week. I know you are ready for October to arrive, so your trip to Boston is behind you, with some answers.
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Jen, I saw a cartoon recently. It’s a board room full of folks sitting around a big conference table. One of the guys is standing and talking to the others. He says, “It’s too early to panic yet, but I think we should make a plan to panic.” That’s me! 🙂
We are closing in on September, and when the month arrives, I’ll be one month away from flying to Boston in October (will the plane get me there in time? will there be delays? cancellations?), trying to figure out how to get to the hotel (is there a shuttle?), how to get between the hotel and the hospital (again, is there a shuttle?), how to do my worst (not my best!) so they can see me at my worst rather than my best (how do I need to behave to make that happen?), and then there’s the actual test. My heart was not thrilled to have the right heart cath done. I could feel it beating erratically and objecting. Just imagine how it’s going to feel about another cath AND being expected to pump hard while I ride a bicycle! Oy! I’m trying not to panic, yet, but content myself with making a plan to panic.
I’m feeling alright. I mowed today for about an hour. Could do so only because the mower is now fixed and the self-propelled mechanism works wonderfully well. I guide it, as much as I push it. Yeah! My BP when I finished was down to 104/65, my HR was 102, and my O2 sat was 92%. I find that when I’m up on my feet and exerting myself, I collect fluid. Today, my escapade made me gain 2.2 lbs.
I was reminded today about a medical journal article that said a certain percentage of cancer patients who have radiation to the internal mammary lymph nodes and have anthracycline chemotherapy will develop heart failure. I had a lot of the Red Devil (adriamycin), and a pretty good dose of radiation as well.
For 13 years doctors have done echos and ECGs and a few stress tests and told me my heart is in excellent shape. Doctors have also repeatedly told me my lungs are fine. Someone isn’t catching something, somewhere. And I have a lot of fear that they won’t find anything in Boston, either.
So I’ll just continue trying to mow my grass, fight a BP that falls in response to that kind of stressor and a HR that rises, and continue the slow decline of my resting and exertion O2 rates. I’ll die, and they’ll lay copies of the latest imaging and labs on top of my cold body, saying that my heart and lungs were in perfect shape when I died, so whatever I died of, it’s not because they failed to catch something.
I got my handicapped tags. One for the car and one for the truck. Haven’t used them yet. But I do have them.
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LOL, @brendad53, it may come as a shocker, but I can relate as so many others probably can too! Last week I was a Nervous Nacy, often known as a “worry wart” by my extended family. It’s better most days, but I continue to increase my worrying and anxiety when things are up in the air. So, I can only imagine how much anxiety you must have.
Your post reminded me of something Manny said once when I was having issues, and when I went to see the doc and do some testing, my body seemed to be on its best behavior. He is a diesel tech, so he says it’s like my check engine light is on daily until I “pull” into the doctor’s office or testing center. It’s so crazy that we worry that our body’s check engine light will clear when we need it to light up for diagnostic reasons. It never fails!
Well, congrats on your disability placards; now use them!! In time, you’ll eventually say, “screw this,” and do it as you know it helps.
I’m sending you extra gentle hugs, my PHriend. We are holding your hand and waiting for you.
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I have to confess, Jen, that today I stopped at a grocery store on my way home from a medical appointment. I didn’t use the handicapped placards, as I got a spot fairly close to the store. Yet as I walked around in there, I found myself wearing a bit “thin” and wondering if parking a little bit closer would have been useful. And I think, at such times, about using the riding carts. I’ve used those before, but try not to unless I’m really in bad shape.
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Hi @brendad53, maybe next time you will use it. I use the electric carts in larger stores; I cannot walk that far and don’t want to add that pressure on my body. I try to push it some days but have had bad experiences when I am alone, so I now use those carts and do it with a smile.
I can easily relate; I’ve had those days, too. But we must learn to do what’s best for our bodies; who cares what anyone else thinks? But if you’re like me and most others here, you are too hard on yourself! Allow yourself some grace and treat yourself with the same TLC you do others.
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@jenc @brendad53 I have another theory about why you might suddenly seem better when you are at an appointment but from a caregivers perspective.
When Cullen wasn’t doing well I would be stressed and visibly worried until we got to the hospital. Once we were settled in an ER room I would allow myself to breath a bit. I could think clearer and felt calmer.
My point is that maybe without realizing it, you allow yourself to relax a bit at appointments because you are somewhere you can receive immediate help if you need it. When the body relaxes it helps other issues too.
Just a theory.
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LOL @brendad53, I can imagine your PTSD plays a role in this, too. It must be challenging to relax even after you’ve built trust in medical providers. Does it usually take you longer to build trust, or does it depend on the individual? I can imagine you are on “high alert” more often than not.
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Jen, how long it takes me to build trust mostly depends on the physician/nurse and the interactions we have—their nature and their frequency. I have learned to trust my PCP because we’ve had fairly frequent interactions and on the whole his attention and collaborativeness have won me over. Same with my hematologist. The very first time I met him, he was effusive about what an astute patient I was, to catch my own DVT, and he has always treated me as if he thought I had good questions to ask and good things to say. Because of my accumulated levels of trust in these two men, when they both (AND *me*) missed the fact that I had a PE despite clear symptoms that I did, I found myself irritated that we (WE) had missed it, but not angry with them and not less trustful of them.
Why so? Because I know they know ME. Not as an abstract patient with X malady. But as a person with characteristics and ideas and symptoms and needs. And all those things are OK with them. Those things don’t make me a PITA or problem for them.
Contrast that with what happened when I got cancer. (1) I went to the local cancer center, and was assigned to a treatment team. I was expressly forbidden to choose my own oncologists.
(2) The medical oncologist at our first meeting told me he was OK with me using nutritional supplements, but then spent the next six weeks mounting a campaign to persuade me not to take them.
(3) The medical literature I began reading said that a PET scan was desirable for inflammatory breast cancer patients because it was the most reliable at finding hidden pockets of cancer. I asked politely three times for a PET scan among my imaging scans. They refused each time. However, when an oncologist at a different hospital (second opinion) said I needed one and put in the request at my hospital, my team had it arranged within 24 hours.
(4) The last time I myself asked for the PET scan, I was told not only did they not do it for staging at my hospital, but it would delay the start of my first chemo by at least 10 days, and they wanted to get me into chemo ASAP. Yet the very next day the very same person told me they were going to delay my port insertion by 7 days for a reason that didn’t apply to me, AND I HAD ALREADY EXPLAINED TO THEM THAT IT DID NOT APPLY. They simply didn’t believe me.
(5) Oh…back up to before my diagnosis, when I was going to be seen in their breast clinic to be evaluated for IBC. I had read that a mammogram wasn’t very useful in making the diagnosis because of the way IBC presents. So I had asked for an ultrasound and biopsy if that were necessary, but said I would not do a mammogram. I had to repeat my request EIGHT times in the week before that first clinical evaluation, to EIGHT different people, explaining my rationale for rejecting a mammogram and opting for other diagnostic tools that were more reliable for detecting IBC. In the end, in our final email exchange before clinic day, the PA agreed that I would not have a mammogram. Then, on the day I saw her in clinic, she tried to ignore our agreement and send me for a mammogram. When I questioned what she was doing, she tried to scare me into agreeing rather than talking rationally with me (AGAIN) about my rationale, etc. It was only when I was preparing to leave her exam room with no imaging that she relented and arranged for me to have an US and biopsy.
All of these things happened in my first 4 weeks’ interaction with the cancer hospital and the doctors and nurses therein. Having gotten off on a “ME Doctor God; YOU puny patient” footing, things did not get better. I learned very quickly not to trust them, because they refused to listen to me and to BELIEVE me. We never recovered.
When several months later the surgeon violated our pre-surgery consult agreements (which I had written into my consent forms), that further eroded my ability to trust them. Worse, it exacerbated my PTSD. Sadly enough, the entire cancer experience could have helped me heal some of the PTSD. Instead, it made it worse.
I have spent my adult life having a recurring nightmare in which people are about to do something to me “for my own good,” and I cannot make my voice heard in the matter. No matter what I do, I can’t get their attention and tell them what I want or don’t want. Think or don’t think. Because it doesn’t matter to these nightmare people. They are going to do what they are going to do, and I have no say. I always woke up from those dreams in a big panic, often sobbing. The nightmare became a reality for me when I got cancer. NOT because of the diagnosis, but because of the people and the setting that the diagnosis meant I had to cope with. I have a whole book about this whole story. If you have the will and the stomach for it, you’re welcome to be beta readers.
When I walk into any medical facility, face any doctor — I am in my equivalent of a “battlefield status” compared to a military veteran. Medical facilities are my battlefield. I have to be careful there. Very, VERY careful, because the locals (doctors and nurses) may be good guys or guys that will hurt me. Until I’ve interacted with them for a while, I can’t know for sure.
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Hi @brendad53, that makes sense, perfectly. I’m grateful that you have several trustworthy doctors on your side. Like you, I am a bit picky with my medical team. I will find one that I know will work with me and not treat me as lesser than when it’s my body. I also want them to be knowledgeable or open to learning.
I, too, would have been furious with the issues with the oncology team. That’s so crazy that you couldn’t select the one you wanted to see. When we came here, I had to find several new specialists, like my pain and kidney doc. I read up on the doctors in the groups that were in the network and called and only wanted those specific providers. When I told the schedulers why I needed this, she had no problem adding me to their schedules and being on the waiting list. Because I’ve been told and know I’m a tad complicated aka “hott mess express”, I fight for this. We all should have these options.
Positive thoughts and prayers that your doctors at B&Y in Boston are trustworthy. I feel like they will be. I have several PHriends that are treated there and at MGH, and all are satisfied.
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Hi @colleensteele, I think you may be on to something here. I know if I’m home alone or out alone, especially and experience an increase or new symptom, I am a “hott mess express.”
But if Manny is by my side, I can relax a little, but add in my PH team, and staff I know will take care of me, which makes perfect sense. I am often pon “high alert” until being in the ER some time. Of course, that depends on which ER I am at, too.
I have never thought of that perspective, but I love that you shared that; now, I will ask Manny if he agrees.
Does anyone else have a perspective on this, patient, or caregiver?
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Jen, several years ago I realized that I don’t know how to be sick. I don’t know how to be a patient. Not in a medical setting. Because I have to be on alert and watch my back and be careful to try not to let anyone there hurt me. As a result, I can’t just relax into the “patient” role. When I was hospitalized for neutropenia during my cancer treatment, I was there for 4 days and 3 nights. My total time sleeping during that entire span of time was probably 8 hours. I couldn’t relax enough to sleep. I mean physically relax, not mentally. I was too keyed up and on alert. I tried taking a sleeping pill. I got about 2.5 hours out of it.
I really envy people who have people who have their backs medically. That is a gift for them, whether they are always aware of it or not.
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Hi @brendad53, I am sorry about your “high alert” and anxiety when in a medical setting. I can understand that after you’ve experienced so many traumatic experiences in a medical environment. I can only hope that you can rest a bit more as you continue to find doctors who have your back and whom you trust. It won’t be easy but maybe in time.
You’re right, it’s such an amazing gift when you have that team who has your back, medically. I know it often takes a few frogs (or frogettes), as they say. Hugs are coming your way, my PHriend.
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All of you are my superheroes. I can’t believe what you all go through and then help each other and all of us through these forums. Thank you from the bottom of my heart. I too have a heart problem having had open heart surgery with triple bypasses. I have other problems like arthritis in my back, feet and hands, etc. as well as osteoporosis and three “leaky” valves. I try not to share this much with others as it always sounds like too much to be real. And I always hear comments like “but you look so good”. I try to be gracious and thank them. But down deep I feel like they’re saying “yeah, that can’t be true”. So I usually make light of my problems, and move on.
I wish all of you well and remember you in my prayers for help and thanksgiving.
Blessings to everyone.-
@jbarry28 you are so sweet to refer to us a superheroes but we are just good PHriends helping each other with the best that we have to offer, which is an understanding need for compassion, respect and knowledge if we have the experience to base any on. I’m so glad you found us and I hope you know that here, you never have to hold back on what you are going through physically and emotionally.
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Hi @jbarry28, you are too kind. But we are so not superheroes, but we do our best to keep PHighting. We enjoy comforting others as we know what it feels like when no one seems to understand.
Please know this is an open group, and we welcome any feelings you may have, even if you need to vent about something else that is not related to PH that you are struggling with. We also celebrate the tiny victories together. Because we all know, it’s the smallest things that count!
You have a ton to manage on your plate. How are you managing most days?
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Janet, what if someone said to you, “Man! You look really good for all that you’ve been through! How do you manage to do it!”
Would that feel less like they were dismissing or ignoring your statements about what’s going on with you?
Just wondering, because I’m becoming mindful of how I react to others and want to be sure not to come across so crassly.
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Hi @brendad53, I’m not @jbarry28, but there is no correct answer to this, IMHO. It depends on my mood, how I feel at that moment, and who it is. Generally, I’ll say thanks and change the subject or move alone.
For example, yesterday, I went to pick up meds and stopped by the library to grab a few books. I ran into a lovely older couple who was my neighbor and just moved back to their home a few minutes away. She knew I had been in the hospital. She asked how I was doing and then said(as my mom does, “you’re really sucking that in”- referring to my POC and the noise it makes each time I breathe. I said I was OK but a little tired.
On my drive home, across the street, I passed a neighbor friend’s garage and she was outside. I waved. She texted me later and said, “you look great”- I was thinking to myself- “really- and how did she even see me, I was wearing sunglasses and passing by”- I was beat and hurting. But I replied thanks. Then she texted if I wanted to come over there and have a glass of wine. I ignored it and chilled on my hammock, trying to start a book.
So, my point is, it depends; I’m a tad “salty” or “spicy” at times, as Manny and KK( my daughter) say. But in general, I try my best to be kind.
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My cardiologist told me I have A-fib.I was diagnosed with HHT and CLL.He will not put me on blood thinners because of risk of bleeding out.My heart races a lot with episodes of it pounding a lot and those fluttery feelings.He says there is nothing more he can do for me and to enjoy every day.I am on Losartan and Metoprolol to help with high blood pressure.
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Hi @pam-muell, I’m so sorry about the A-fib and other illnesses along with PH. Racing heart and flutters are uncomfortable, even for those of us who have experienced those symptoms for years. I hate to hear that your doctor says there is nothing more he can do for you. Have you had ablations in the past or would they not do that either for risk of bleeding?
There is a member here with HHT and quite knowledgeable. I’ll see if I can find some of his posts and tag you. Maybe you two can communicate and if you have questions he would be a resourceful guy.
I hope and pray that your current medications help offer some relief. Are you not on any other PH specific treatments? Thanks for sharing.
Like @brendad53 mentions, I certainly think that our medical providers , or most, need more education on the connection of so many of these coexisting conditions. I’m grateful for a PH team that I know is educated enough to make the best decisions about my care. Now, if I can find a new neurologist that makes me feel the same.
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LOL, too funny, @brendad53; I love your twist for those two acronyms. Thanks, @pam-muell, for sharing that information with Brenda and the other forum members.
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Hi Pam, reading your posts it occurs to me that you are on a lot of heavy meds. Has anyone suggested, or done, an audit to see if some of these meds may be interacting with some of the others? Perhaps some of your symptoms are a result of this ?? I can’t begin to know how being told by your cardio that he couldn’t do anything more for you made you feel. It made me angry just reading this. We have to be our own advocates but it’s hard when things are so complicated. Warm hugs and best wishes for a better medical team to treat you.
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Yes,I am on a lot of medications,I am also on 4 anti-depressant meds and pain meds for chronic pain.I have type II diabetes so I am on Januvia and glipizide for that.It’s time that my doctors review my med list.I would like to be able to do without some of these meds.Thank you so much Aunt Lizzie for your caring and concern.Take care.
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Hi @auntlizzie, what an incredible catch and suggestion you offered @pam-muell. I love how caring you were and offered her other tips.
Pam, I hope that you’ll see your doctors soon and have them review those medications. Do your PH clinics include a pharmacist as part of the team? I know that UCSD and UCLA do, and I love the idea that they can review and catch anything that may be doing more harm than good. Houston didn’t when I was there.
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You know, reading through all of these responses, again, I am left with the feeling that modern medicine is not yet playing their “A game” when it comes to disorders of the cardiovascular system. There seem to be so many interconnections between the two, not to mention those two systems and neurology.
And so many ways that those connections can go ka-flooey! Modern medicine either doesn’t know all of those ways yet or doesn’t fully appreciate all of them. They’re not taught well in medical school (if at all?). What the patient has to hope for is that they get a physician who can see potential connections and is able and willing to chase them down (or get someone else to chase them down).
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HHT is Hemorragic Telenglasia and CLL is chronic lymphocytic leukemia.I like your answers better though Brenda,lol!I am on sildenafil and Letairis to treat my PAH.I am on losartin,metoprolol and torasemide for my heart and blood pressure.I am seriously considering changing my pulmonary provider.We live only an hour from The University of Nebraska Medical Center so I am going to check there.
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Just want to mention how much I appreciate our members. Love how @brendad53 attached some humor to her question and that @pam-muell was quick to respond. Advocacy and Awareness does not have to be a stressful process. It can and should look like this!
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