June 20, 2018 at 1:02 pm #12380
I was recently diagnosed with PH and just had some questions I was hoping maybe you all can help me with? I was in the ICU for 3 days then a step down part of the hospital for another 3 days. The team of Dr’s I had working with me @ Tufts Medical Center in Boston were really great. So at first they thought my kidneys were failing but were wrong along with that and some other diagnosis until they came up with PH and lung disease. Also one side of my heart is bigger than the other. I’m not sure if all PH patients have that also? So before they sent me home, they were debating on sending me home with oxygen and chose not to? Is this ok if I have PH? I mean, I can walk a mile now pretty much without getting winded but I was just out taking my daughter for a walk in her stroller and noticed I did get winded pretty fast. I kind of wish they did send me home with oxygen for times like that and for night time when it really hits me. It’s strange, I can be sitting for a while and all of a sudden it’s hard to breathe? I feel like I always knew something was wrong with my heart especially but feel the Dr’s never took me too seriously. I’ve also had really high BP since my early 20’s but they always just send me home like I’m fine and I’m talking 200/100 at times. I also suffer from bad bad migraines and just recently a new kind of headache (not a migraine) but just as bad. With my migraines I’ll see colors and evemtually my vision goes for a bit followed by a wicked headache. With these new headaches they’ve only happened when I wake up in the a.m. and are so punishing, Ive almost had my Fiance’ call an ambulance. Those headaches have a sledge hammer effect and go with the rhythm of my heart beat. But again, no colors. I did end up going to the ER after one of them because it was THAT bad and it takes a lot for me to go to the ER. I thought they’d do some tests but they didn’t. The Dr actually said to me “well, it hasn’t killed you yet” and sent me on my way. Anyway, PH is a progressive disease right? Does this mean it’ll never get better and will continually get worse? I’ve stopped smoking cigarettes since I went in (11 days ago) and it’s not a problem at all. I was down to 1 or 2 for almost a year so it’s really not bad plus I’m gonna do anything and everything to make sure I’m around for my baby daughter as long as possible. My 1st appt. With my Pulmonologist isn’t til the 3rd of July. Do any of you have some good questions I should ask them when I go? And will I almost positively get the heart cath I’ve been hearing about? Thanks so much for your time and any tips, tricks or suggestions would be greatly appreciated. Thank you
June 20, 2018 at 1:13 pm #12381Kathleen ShefferParticipant
I’m glad you still seem to be pretty healthy. Congratulations on quitting smoking! PH is a progressive disease, but many patients live long healthy lives with treatment, and some are even able to go off treatment.
I would recommend getting a home oxygen saturation monitor (they’re on Amazon for under $15) to use when you have symptoms, or when you are exercising just to see how low your numbers drop. This will be useful information for your doctors, and hopefully put your mind at ease – if your oxygen saturation is above 95 percent, you’re fine to be on room air. Lower 90’s and they might consider giving you supplemental oxygen. If you’re recording saturations below 90 percent I would definitely ask for a prescription for oxygen.
A right heart catheterization is the only way to officially diagnose pulmonary hypertension, so I would imagine you will have one soon. I’m sorry you’re going through this, but glad you found our Forums so you can connect with other people who have been there too!
June 20, 2018 at 2:01 pm #12384
As Kathleen said, everyone is different in how their body responds to medications and treatments. I am pretty sure they will do a right heart cath and i would ask questions such as where they plan on placing the cath, recovery time, any limitations immediately after (and limitations in general). I know for me, they didn’t want me exercising until I had a cath. If you are having symptoms write down each symptom and keep a journal of symptoms documenting what you’re feeling, what you’re doing, what time of day it is when it happens etc. This way you can ask your doctor about plans for symptom management while waiting on a next test or procedure.
Bring up the oxygen to them and make sure they test oxygen with exertion too and not just sitting. Sometimes they do a home monitor for oxygen like a 24 to 48 hr monitor that is places on your finger to measure oxygen levels through the day. I was sent home on oxygen from the hospital where they had me monitored so i didn’t have this exact test but i know people who have !
Best of luck! We are all here for you and want to support you.
June 20, 2018 at 2:31 pm #12386Beverly RepouilleParticipant
Hi, Rick and welcome to the group!
You asked about one side of your heart being bigger than the other. Yes, with PH the right side of your heart can get larger due to the fact that as the lungs can’t get enough oxygen the right side of the heart which provides blood to the lungs has to work harder to provide more blood to the lungs.
As for oxygen, I’ve been diagnosed now for 2 1/2 years and just recently went on it. I think it depends on how you are reacting to physically stressing your body. A good question to ask the pulmonologist!
The headaches you are talking about could relate to oxygen deprivation when you sleep. Do you have sleep apnea? I sleep with oxygen at night. If I don’t I wake up with a pretty bad headache.
Keep us posted! HUGS!
June 21, 2018 at 6:18 am #12399
Thanks you guys (I mean girls) lol seeiosly tho, this group is 99% female and trust me I’m not complaining just an observation 🙂 you are all so helpful and I appreciate it. Brittany: I started a journal/log yesterday with how I’m feeling day to day. Kathleen: I’m definitely going to look into the home oxygen satuation thing you recommended. Beverly: thanks so much for your input. Thank all of you for your input and sharing your knowledge on this subject with me. I will definitely use it!
June 21, 2018 at 11:17 am #12408
always a great thing to see male interaction on here too! It’s great that we can all be there for one another and give advice based on our own experiences! That’s such great support to have. And we all know that support and feeling understood is half the battle when dealing with any health condition or trials in life. Stay as well as possible 🙂
June 21, 2018 at 9:07 am #12403Randolph ReynoldsParticipant
Anyone one with CTEPH undergone surgery for it? Currently they are planning to set me up for Remodulin. This is new to me and I am uncertain of how complicated living with a pump will be.
June 21, 2018 at 9:38 am #12404Charlotte GilbertParticipant
I was diagnosed 5 years October. I would DEEPLY recommend finding a Physician who specializes in Pulmonary Hypertension. I am currently on the following Meds and you may be put on some of the same ones.
-sildenafil ( yep, viagara – was I itialky made for ph patients )
-veletri- IV pump change every 24 hours
– home oxygen
– Bumex – diuretic
It’s is a progressive disease but don’t focus on that. Do what you can when you can. Please do t be afraid to get that home oxygen! Your job now is to breathe and stay breathing!
Exercise: Yoga helps but be cautious and keep your heart above your waist when exercising. This will cause your lungs and pulmonary artery not to have to work so hard. Stay as mobile as you can but dont push it.. your energy is limited and you will nap mode…
I have had 6 heart caths and I am not a fan of them. I have had 5 through the leg and one through the neck. If they go through your thigh you have to stay still for 4 hours in your back so the femoral artery will close. If they go through the neck, your wait time is only 30 minutes…
Before i was diagnosed, exactly one month before I could ride my bike 5 miles with no problem. It’s a strange scary change In Your lifestyle and having a counselor will really help!
Keep your head high and keep moving forward! Get as much education as possible but stay off of WebMD… it’s crap information…we will always be forthright and honest here and will always help!
June 21, 2018 at 11:21 am #12409
all of your advice is amazing and it is advice that everyone should read and take note of. I completely understand how it feels to realize the limitations that weren’t there before. It’s such an overwhelming part of this disease and just accepting it for what it is takes so much time and counseling to be able to get to that point. I’m not sure if I will ever fully accept the state of my health but I am much better at listening to my body and not ignoring the warning signs! If I listened to myself properly I would have had help sooner. Thanks again for all of your input. I know every member will truly appreciate what you are saying.
June 21, 2018 at 10:08 am #12405AnonymousInactive
I was originally diagnosed with PH about nine years ago. I had an echocardiogram because of shortness of breath. My pulmonary pressure was about 65. My cardiologist kind of blew it off by wanting to treat me for hypertension and put me on blood pressure medicine. Trouble was my regular BP wasn’t high. I passed out one day from low blood pressure. So I stopped blood pressure meds. I continued to be sob with exertion. I’ve always struggled with weight and thought I was just in poor condition. My son got worse and I was retaining tons of fluid. One day I was so sob after walking into work from the parking lot that my friends took me to the hospital. I couldn’t get a stress test because the medication kept lowering my blood pressure to low. They did a left and right heart cath. The left was normal but during the right, my pulmonary pressure was about 110. I was also in severe heart failure. I was put on IV lasix and lost 40 lbs of fluid in 4 days. That was my only good news. I went home, two dress sizes smaller. I felt a lot better but still kept getting sob on exertion. I’ve never qualified for O2 during the day because I kept my O2 sats at 90 during my six minute walks. I do use O2 at night because my sat’s drop into the low 70’s when sleeping. My work was too stressful and I couldn’t physically handle my 12 hour work days. I had to go on disability about 6 months ago.
This is my question. I was diagnosed with a severe blood clotting disorder in my early 40’s after surviving at least 6 pulmonary embolisms (one massive where I was literally brought back to life) . They said the only reason I survived was that the massive clot broke apart at the last minute and distributed tiny clots through out both lung. They called it a “starburst effect”. I have had about 4 more PE’s when my Coumadin doses got too low.
When I was diagnosed with PH, they thought it had to be cteph due to my clots, but my pulmonary angiogram was normal. I was disappointed because if it was cteph I could have been cured with surgery. Have you heard if you can have cteph with a normal angiogram? I just really want to get better again. I want to go back to work and get my life back.
June 21, 2018 at 11:26 am #12410
I truly feel for you and see that you have been through so much. As someone who has had frequent episodes of fainting, I know how much it impacts me both physically and psychologically too. It’s so much stress to process exactly what is going on with our body. I don’t have blood clots and don’t have a history of that so I’m not sure how to answer your question. I do know that it might be worth it to get a second opinion (not sure if you already have) regarding the clotting and CTEPH. I so wish there was something that they could “find” to fix all of us and make us better with a surgery. Unfortunately, as in my situation, no matter how hard they try to find something they can “fix” it’s more about the function of my heart and lungs that have left a lasting impact on my body. In that situation it’s more about medications, symptom management, and monitoring progression which can seem so gloom and doom especially when we start to see things getting a bit worse to the point where we can no longer work anymore. I know how it feels to want to just get this part of our life done and over with. Even though it seems tough, just know that you always have support here from the people who understand.
June 21, 2018 at 1:34 pm #12413
Wow, you’re all so brave and to me you’re all soldiers. This pretty much is a serious and silent disease that by looking at us for the most part we look normal and it’s a hard battle to fight on your own. Like I said before (well, I think I did?) My Fiance’ and I are all we have and without her I’m positive I’d be long gone by now. And after 2 to almost 3 years we had our beautiful miracle baby and couldn’t be happier.
I really don’t like to share this woth many but I really feel like I can tell you all after hearing your responses to the questions I had. Basically, we’re all adults right?! Anyway, I had 12 uear heroin, cocaine, booze, pill etc habit and now I have over 2 yrs clean and sober and will never look back. I really did a number on my body so Im really not so surprised about a diagnosis like this 🙁 when I used, I was using to die and wished dor it. I am so happy to say now I WANNA LIVE! I wanna live for my 5 month old daughter, I wanna live for my magnificent Fiance’ who I’ve put a lot thru and never left my side, and I wanna live for me! It took a long time but there is so much more to enjoy in life and I don’t wanna miss it. Welp, I’m sorry guys/gals for this rant but it felt good to let it go so thank you for your cooperation:-) and thank you Charlotte for the tip to not go on WebMD. That stuff can make you wanna hide in your closet sometimes haha. You’re all so awesome and helpful! Thank you all! I’m actually off to my shrink appointment now. I have lots of therapy and fpr the most part has never helped but I will never stop trying 🙄
June 21, 2018 at 6:56 pm #12423
I admire you for you honesty and for sharing that with the group. I’m sure everyone will agree that opening up about addiction is so difficult. One of the hardest things you can do when going through addiction of any kind is find that will to live inside of you. I have faced different kinds of “addictions” as well in the form of different eating disorders. When it came down to it, it was a slow suicide. I was killing myself and at the time didn’t have much care. As I said, the will to live in the most powerful feeling in the world. Even though we are going through so much it is amazing to me that we still find the strength within us to do it all over again each day. As with anything, taking one moment at a time and staying as present as possible helps so much. All we have control over is the moment we are in. Continue to share your story, I know it will inspire and help others. You never know who needs to hear that.
June 21, 2018 at 4:14 pm #12416KRISTINEParticipant
Rick, Et All,
I myself am somewhat new to this journey that this diagnosis takes us on. Most of what I learned immediately following dx. I did gather from i-net research. It took me 6 mos. to go to the pulmonary spclst. Like so many others I woke up one day and just gasped for air. Much more than usual. I was a smoker and have had a great many yrs. of shortness of breath but nothing I couldn’t live with. Compared to now I wish I could go back to those sob days. I only had my right hrt cath 2 mos. ago. where I learned that the vein in the groin area dead ends and doesn’t go all the way to the pulmonary artery and heart, therefore a smaller vein has stepped into the role of delivering blood back to pulm. artry & hrt. but it is smaller than should be so blood return is not as it should be, i am also diagnosed with COPD.
I don’t have insurance so that has been a huge obstacle in treatment. As someone new but not brand new to all this, i wasn’t aware of the good days vs. bad days, and on the bad days i thought for sure i was dying and very near the end. Luckily with the knowledge of this group and the plethora of info available i better understand this “thing” we all are living with. I feel frustrated at times like my treatment isn’t going as quickly as i think it should, or i keep thinking there must be a treatment that will help me breathe better. Interestingly enough when i had my sleep study done i don’t have sleep apnea but have severe hypoxia (low oxygen level)during sleep.
My boss is very near retirement which means closing down this business, which i have a job that is tailored around my breathing issues. i will never find employment beyond this. i would be incapable of most jobs, which means applying for disability is my only viable option. That is going to be a eye opening experience with a wake up call from h–l. I need a 2nd mortgage every week just to keep my dogs in dog treats. lol ha ha gotta laugh when we can.
Yeah, breathing, talk about things you take for-granted in life.
excuse the type o’s. i use all caps for my job, and upon suggestion i am not using caps in this forum, so things that should have been capitalized may not be.
June 21, 2018 at 7:01 pm #12424
Like you I have the smaller veins and arteries giving blood to my body and my lungs. This limits the blood flow and the input and output into the heart and lungs are delayed during activity which leads to the further constriction and hypertension for me. I was never a smoker but have severe obstructive disease. That on top of the PH requires many breathing treatments and steroids throughout the day to be able to breathe more simply. I am also on disability (I read that part of your message) and really feel for those who are unable to work because of the limitations they are facing. It’s something that is so hard to accept and it is easy to grow impatient with our bodies and with the treatment plan we are receiving. Everyone responds differently to medications and what may work for some may not necessarily have any effect on someone else. That is what makes treating this disease so hard and somewhat of a trial and error for so many doctors who are trying to help us. This just leaves us feeling rightfully angry and frustrated! It is nice to know I am not alone in these feelings. Support is so important !
June 21, 2018 at 4:21 pm #12417KRISTINEParticipant
Thanks for opening up like that and sharing. I also have a bit of a seedy past, luckily that is in the past where it now stays. I did a lot of online research and it was before I found this forum, and there were times were it was immensely overwhelming, but had it not been for that I wouldn’t have the understanding of this dx, nor would I have found this group of people.
June 21, 2018 at 5:11 pm #12419Randolph ReynoldsParticipant
Greetings to all. Looks like I’m getting emails from this site now. I just had my second heart catheterization after finding out that my CTEPH was worse, that is my heart pressures have increased. It was suggested that I look into surgery but I don’t know anyone who has gone through that and my Pulmonologist has put me on remoodulin. I just learned the regimen. Each of us is different but we do share the same physical constraints. If my cardiologist had not discovered my pulmonary arterial hypertension I’d be stuck in a local hospital undergoing numerous tests. We just have to keep putting one step ahead of the other.
June 21, 2018 at 7:03 pm #12426
you are so right. It is impossible to change our diagnosis so it is best to shift our minds to thinking about the things we CAN do with it and embracing the good days as they happen. Thanks for the encouragement on the forum. I am glad doctors found your elevated pressures and that they are now treating it. Also glad that you found this forum and I hope it helps you too!
June 22, 2018 at 2:58 pm #12443Robin TaylorParticipant
Hi Rick and all! Everyone has given such great information and advice! I just have a couple of things to add…when I was hospitalized and diagnosed last September, I fortunately found the PH Association website. I went from knowing absolutely nothing about this disease to being asked by a Pulmonologist several months later if I was a nurse or in the medical field, lol! Basically, I read so much on the disease through the website I started picking up the vernacular. It can be overwhelming, but the information is out there…just digest a bit at a time. I think we all should know as much as we can about PH so we can help the doctors treat us. I too, keep a log. Every morning I note my Pulse Oxygen range (the initial number isn’t accurate, you need to wait a 20 seconds or so, until your heart rate smooths out), my blood pressure and my weight and any weird things my body might be doing on a particular day. This really helps when discussing concerns with your doctor and shows trends that your PH is taking. One thing I found interesting and confusing in the beginning was the PH types,groups and Function classes. I have type 1 which is Idiopathic Pulmonary Hypertension with a Function class of 2. Meaning they don’t have a source of my PAH and I have normal function with little or no breathlessness. (With being on 3 PH meds and Oxygen 24/7!) After they work you up, they might decide your PH is hereditary or possibly from past drug use. Long comment short…knowledge is power, learn as much as you can so you can fight this disease head on!!! Good Luck, Rick and be proactive and if your blood oxygen is low, get your primary to prescribe it, before you see your Pulmonologist!!!
June 25, 2018 at 6:39 pm #12466
this is great advice! Thank you for sharing your thoughts with us and your experiences. I am also on oxygen to help with my PH and it honestly makes a world of difference when I am good about using it. (some days I admit that I am better than others about wearing it). I was discharged from the hospital with the oxygen over 2 years ago and still am using it to help with exertion hypoxemia. I love your advice about reading up about as much as you can from an accredited site. There are also many sites out there that have either wrong or outdated information. It is always best to go to the best sites and to ask a doctor what they would recommend as a source of information online. They usually have hospital sites with info like Mayo Clinic or other top hospitals that have studies on PH. Being our own advocate and not being afraid to learn about ourselves is a huge part of feeling like we have control over this.
June 26, 2018 at 7:57 am #12479rosemary martinParticipant
I have nothing to add; but want to thank you all for your sharing.
June 26, 2018 at 8:09 am #12480
Thank you all again for the advice and encouragement. Yesterday was kinda tough. I went back to the ER because all day I was seeing colors and lightheaded as if I stood up too quick but I wasn’t. We figured out what could be the main problem. Recently (like last week) my bp was really high and my pcp wanted to double up my lisinopril from 10mg to 20mg which seemed to be fine. I was taling my bp at home and it was near perfect. So when I was at the hospital the first thing they found was that I was dehydrated. Second, they took my bp laying down, sitting up and finally standing. The ones laying down and sitting up were fine but when thwy took it standing up, it dropped a bunch. I just want to get to this appointment on the 3rd with the professional/pulmonologist. I was talking to my nurse yesterday and told her about my new diagnosis and she says “oh yeah, everybody’s got that”. And I say, I think you’re thinking of reg hypertension/high bp. I was just really surprised she had no idea about it. This isn’t the first time I’ve mentioned it to a “medical professional” and they had no idea what it was. It can be a little aggravating.
June 26, 2018 at 1:39 pm #12488
I can understand the frustration. I actually have quite a few “rare conditions” that i always seemed to be explaining over and over again especially in an ER. Something that I have recently done that has helped is had my primary care do a write up of all my makot conditions that might be difficult for those who have never heard of it before to understand. This way i have something to hand to them so i am not explaining myself a million times. It helps on the days we don’t feel like using any more energy to talk.
I’m sorry you have been experienging the changes in blood pressure with standing and moving. This has happened to me before too and seeing spots and having dizziness is so unpleasant. I would stay as hydrated as possible and be sure to also include some type of salt intake (but not to the point where you see swelling from it!) It’s a hard balance but it helps doctors get a sense of where this is coming from and why its happening. Best of luck!continue to update us.
June 26, 2018 at 9:01 am #12481rosemary martinParticipant
Rick, have you tried calling the pulmonologist office and pleading with them to get you in earlier or to see if they could alert you if they have had a cancellation? Did one of your doctor’s recommend this doctor? If so, perhaps they could make a call for you.
June 26, 2018 at 1:40 pm #12489
I would tell them any mew symptoms too! If its something that is alarming to them or a red flag then they should have record of that. Be sure to stress the fact that you were in the hospital too.
June 26, 2018 at 9:44 am #12483VKParticipant
I found your post very informational, although I’m very sorry you had to go through all of that with your medical team.
I’m just going to relate my PH/PHTN story because I’m in a similar boat (age-wise at least). I was diagnosed at 24 when they found moderate-to-severe impairment (function tests between 35-55% depending on test) due to ribcage problems. I was referred to a cardio who then diagnosed mild to moderate PH via echocardiogram estimation. I can still walk 2 miles and bike 10+ miles at 15MPH with only minor shortness of breath, but where I live is flat as a pancake. Send me up one hill and I’ll be flat on my face.
Any doctor who doesn’t do pulmonology has told me that I probably will have a normal healthy life span.
However, both pulmonologists I’ve seen since then have told me to save up money to retire early, implying that my PH will be progressive. **Not saying your PH is progressive and/or will limit your life, and I really hope it won’t, but I wanted to emphasize that pulmonologists are much better at assessing your risks.**
PH cases vary person to person, and pulmonologists usually have a lot more insight than other doctors. So, here are some questions to ask:
* Degree of lung disease and impact on quality of life (as a patient, I recommend you request they do your lung function tests. Alternately, if your last ones were < 12 months ago, bring those results to the visit).
* Need for and benefit of oxygen therapy.
* If you think it will help, referral to practical therapy (health and exercise counseling) with an exercise specialist or health psychologist who is familiar with lung-impaired people.
Hope this helps and tell us how it goes…
June 26, 2018 at 1:43 pm #12490
Great advice. Especially about seeking a therapist. My therapist doesn’t specialize in health conditions but she has been such a huge part of my support team and I truly wouldn’t be able to manage this without her support she gives me. It’s always helpful to just go and talk to someone. If you are seeling any therapy or counseling it might be beneficial to ask your treatment team if they have recommendations too. Just a thought!
June 26, 2018 at 9:51 am #12484VKParticipant
Sorry to spam your post, but I just read your recent reply about your blood pressure dropping when you stood up. According to experts, that’s known as orthostatic hypOtension, or OH.
According to that article:
* OH in the elderly is common and there is usually no suspicious cause.
* In younger people like us, it is usually a sign of an existing medical condition that affects circulation or breathing
* OH can be precipitated by certain meds like blood pressure lowering drugs (that means your lisinopril dose increase could be part of it).
* It’s not known to be a cause for alarm (unless it makes you pass out completely).
So, I have a feeling the nurse was thinking the lisinopril plus existing cardiopulmonary disease did it. Although her saying “everybody’s got that” was more than a bit insensitive and she should have explained her logic to you.
June 26, 2018 at 1:44 pm #12491
I was diagnosed with the OH too because of what VK mentioned with the circulatiry condition and breathing drive decrease.lack of proper oxygen and poor blood perfusion will do that!
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