April 12, 2021 at 4:37 pm #29681
I was recently diagnosed, 2/8/21, with severe PAH, I am 53 yo, and have always tried to stay moderatively active. I am trying to keep a positive attitude towards managing this disease but lately family and coworkers act as if I am not sick. My wife is complaining that I could do more to help with the daily chores, but some days I am just to exhausted to even get out of bed. We have occasional visitors and I try my best to visit and be normal, I do enjoy having the occasional company and the visits are short. My wife resents that I appear fine with company but spend a lot of time in bed otherwise. My wife has been very supportive and I don’t think I could cope without her, but I feel resentment is building and she states that if I can be that way with visitors then I can do more to help with other things. And arguments are becoming more frequent. At work, I have reduced my hours and my workload and coworkers are stating that I am not pulling my weight, and arguments are becoming more frequent. I am trying my best keep things normal and I don’t want any pity parties, but I don’t know what else to do. I am to the point that I just want everyone to leave me alone and let me die in peace. I have even said that and was told that I was not dieing and to just get over it. Does anyone else have this type of attitude from others? And how do you cope with it?
April 13, 2021 at 5:09 am #29691ValerieParticipant
You are not the only one, we are all constantly faced with the ignorance of the people around us. I think you should take care of yourself first. It’s the only thing you have to do! Even if you didn’t have a PH, you can say, “I want to do this and I don’t want to do this.”
Please don’t think “let me die in peace”. You’re not going to die now! But PH seems to be telling you, ” you have to slow down, rest more, take care of your body, take care of your mind.” If the people around you don’t want to get into your position, don’t pay attention. Tell them (or mentally tell yourself): “I am 53 years old and I will finally do what is best for me.”
I’m constantly learning how to do it myself. I remind myself that it’s better to miss the bus than to make myself feel bad. If you take care of yourself and do as much as you really can, you will bring more benefits to other people.
April 13, 2021 at 9:44 am #29697
Brian, my heart aches for you as I can tell that you really are trying. I, too, look better and act “normal” when visitors come by. But I work hard at “looking good” most days. Afterward, I crash. I live in my PJs most of the week, and I am OK with that. I work for a few hours per day from home; some days, I cannot do that.
As @valeriekv offers some great advice, taking care of yourself is most important. Your wife may be getting caregiver burnout and needs some help, too. I am certain that she does not mean anything negative. She needs a break, too. Watching her love, you, in such bad shape makes her hurt and stress, too.
If possible, she too needs breaks. I would not think “letting you die in peace” is feasible. PH is not a death sentence. It can feel like it some days, but you have to stay optimistic. Rest when you can, slow down, talk to your wife, or maybe have her join the forums. She could benefit, too.
Since you are newly diagnosed, you are both probably scared and unsure what to expect, which causes you both to be highly stressed and cause arguments. You can do this together! I have had PH for 16 years, and my hubby is my rock. But some days, we argue, too.
Are you seeing a PH specialist? That makes a difference, too.
April 13, 2021 at 2:58 pm #29705Colleen SteeleKeymaster
@brian this is such a frustrating reality of PH, to feel so very sick but not look it. I don’t know how much your wife has researched and educated herself about PH. Either she needs to do more of that or she is frightened for you and denial, even anger is her way of dealing with it. PH changes the home dynamics for everyone and I’m afraid it might take time to settle in to this new normal.
There are a number of resources that helped my family help others understand our son’s disease.
1) Printable PH wallet cards. We handed them out like they were candy.
2) More resources to download for patients and their family.
For Patient: https://phassociation.org/wp-content/uploads/2017/05/FREE-MATERIALS-PDF-The-New-Normal.pdf
For Caregiver: https://phassociation.org/wp-content/uploads/2017/05/FREE-MATERIALS-PDF-Guide-Caregivers.pdf
3) Free resource from the PH Association.
I don’t know how you feel about social media but my family found it a helpful place to spread PH awareness. If you read an article that hits home to you, share it.
When you have time scroll through the PH columns. I’m sure you will find many relatable articles.
April 14, 2021 at 9:04 am #29730
April 13, 2021 at 5:16 pm #29710ClydeParticipant
It sounds like you have been reading my mail😁. I have good days and bad days. I got covid in November and it really set me back. Hopefully things will continue to improve and I can help more around the house. Try to do little things that you can do. I walked to the kitchen light switch and turned it off and she just about started crying. Evidently it is the first time I have done that since I was in the hospital. Since then I try to do the little things I can even when I know it’s easier for her. I bring her coffee in bed and she loves it. She is doing a million things for you, do what you can for her
April 14, 2021 at 9:08 am #29731
Hehe, @clydedodge, I love your humor. But most importantly, I love your response to Brian. I, too, had COVID and was hospitalized for weeks, not expected to make it out. My hubby and I are a team. Your story about the light switched resonates with me because I remember something as simple as eating and drinking through a straw were things my hubby was so excited about.
I love that you bring her coffee to bed. My hubby makes my coffee and brings it to me on his off days and usually makes brunch on one of those days, too. We are a team.
I love this, “She is doing a million things for you, do what you can for her”- So true, I love this.
April 14, 2021 at 8:46 am #29726Jennifer BeatyParticipant
@Brian, I too empathize with your situation. I also have to agree with everyone else here. 1) Take care of yourself first! You cannot help anyone else if you don’t. 2) Try to educate your wife as to the symptoms, how PH affects you personally. Since Covid, I have experienced a tremendouns amount of discrimination for not keeping on my mask. But there are simply times that I have to remove it to get more air. So, I tolerate (ignore) the people who don’t know me and therefore have no idea what I’m experiencing physically. 3) Find an ally. My sister-in-law is my biggest advocate. When I remove the mask, if anyone says anything, she (very commandingly) explains my situation.
April 14, 2021 at 9:14 am #29732
Thanks, @jenniferbeaty, for sharing those examples with Clyde. I am sure that he will benefit from these tips and others. I love that you say, find an ally, so important. If it is not his wife, maybe a good friend or another relative. I love that your ally is your sister-in-law. That must be an awesome relationship.
I hope that you are doing well. Do what you need to do regarding your mask. They do make it difficult to breathe, especially if the time is very long.
@mamabear007, thanks for reminding Clyde and us about The Spoon Theory. I often forget to remind others of that take. I always found it helpful in certain situations where others are no getting it. I love how well you describe PH; it truly does ravage your insides.
April 14, 2021 at 8:49 am #29724V.R. PetersonParticipant
PH is one of those diseases that can ravage patients from the inside without leaving external signs that others can see. It’s not like a broken bone that one can plainly see, yet it’s effects can be more devastating than that of a broken bone. Some people are better able to understand if they understand the Spoon Theory. There is a short article that explains it much better than I, and maybe it will help your wife understand if she reads it. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
April 14, 2021 at 10:50 am #29740Susi SteppinsParticipant
I completely agree with what everyone else is saying.
You do have to put yourself first, or you won’t be able to do the things you want to for others.
I remember when I was in the hospital while they were trying to figure out what was wrong with me watching my husband go through all of his emotions was an unreal experience.
I almost felt fortunate to be going through what I was because it offered me an opportunity not many people have.
I saw firsthand how very very much my husband loves me and how close we truly are.
Thankfully I am still here to live the rest of our lives with that knowledge and be able to show each other daily how important we are to one another.
It also showed me how scared he was. Of the changes that were coming, of the expenses we knew were involved, of my possibly not being able to work and of losing me altogether.
It enabled me to sit back and think about how much he does for me and to remember to do for him as well.
@clydedodge is so very right.
When you feel up to it do what you can for her.
Even the small gestures mean a lot.
Last night I noticed that my husband was out of mouth wash and I refilled his bottle for him.
When he came to bed the smile on his face was priceless.
The little things mean a lot.
April 22, 2021 at 11:34 am #29837
April 22, 2021 at 4:18 pm #29851Sally HoffmanParticipant
Hi Brian, I sat here wanting to give you my support but struggling with what to say to you. I wanted to tell you to try to plan for things you want to do but I knew that was not enough. When I saw the post that mentioned the Spoon Theory I decided to read it. I said that’s me. Just substitute PAH for Lupus. Let that story help you. Today is a very special day for me. I am going out for dinner tonight with my husband and our very good friends. It is the first time in 2 years. I was too sick the year before the pandemic. I am very excited. But, I knew if I did too much “i would lose my spoons” I allowed myself four hours to shower and just put on a pair of jeans and a tank top. I’m nervous, but I’m using my spoons carefully to be able to do what I want. Remember also, you are newly diagnosed. It takes some time for these meds to work. We don’t get better in a day. Gradually you may realize that you can do more, if you are careful with your spoons. I wish you the best my friend. Rely on this group.
April 23, 2021 at 1:52 pm #29864
Thank you for all the responses and positive support. I can’t tell much difference in the way I feel yet, just waiting for the meds to take full effect, right now it’s just a waiting game until my next heart cath to see if there is any improvement. All the responses are very helpful and it’s nice to know others have been down this path before me with positive outcomes. I appreciate all of your responses. Thanks
April 23, 2021 at 6:35 pm #29870
Hi @brian, I am happy to see that you came in to update us a tad. Yes, the PH treatments take several weeks at a minimum to see any improvements. When is your next heart cath scheduled? Do you think they may do an Echocardiogram (echo) in between? Some PH centers like to perform an echo in between the RHC (right heart cath).
How are you doing emotionally? How about your wife? I am hoping that she can read up and find support, too. Did she sign up to join us?
We are here for you. You are certainly not alone. Please pop in and let us know if you have specific questions.
One step at a time…
May 2, 2021 at 1:39 pm #29933
I am about 12 wks post diagnosis and seem to be doing well. I think I am getting used to the side effects of the meds. Drinking shots of aloe vera seems to help with the heartburn, without the adverse effects of antacids, and my BP isn’t dropping like before. Also started pulmonary rehab, so I am slowly beginning to get some exercise without the worry of overexerting myself.
My Rheumatologist wants me to start taking Mycophenolate, but I am not really sure if I agree. I have not tested positive for any autoimmune disorders but he feels there might be something that is just waiting ‘to blossom’ and thinks I will benefit from the med., he feels the PAH might be secondary in nature and due to an underlying autoimmune disorder. I am concerned that we will have difficulty determining if any improvement of the PAH, if any, is due to the PAH meds or due to the Mycophenolate. I am meeting with my cardiologist this week to evaluate my progress and hopefully schedule another heart cath.. I also want his opinion on the possibility of increased risk of infection due to the Mycophenylate and any upcoming heart cath. if it is better to wait until after the heart cath. to start the mycophenylate.
May 2, 2021 at 1:44 pm #29934
Mycophenolate not Mycophenylate
May 3, 2021 at 4:32 am #29936
Good stuff Brian,
From a personal view I reckon your doing the right thing in delaying Mycophenolate ‘just in case’ . Why does there have to be an underlying cause ? Sounds like you go to the same
Rheumatologist as me . I see one for my GCA and last time his opening comment was approx. So your seeing ….. as you have PAH .What was the underlying cause? What!
I reminded him that he was the one who sent me to respiratory as I complained I had breathing issues five months into reducing the prednisone and they discharged me after 12 months with mild emphysema so I sought help elsewhere as I was getting desperate. I do know that my PAH doc. is wary of me being on methotrexate which like mycophenolate can cause breathing issues etc. I would ask more questions.
Seems methotrexate has all kinds of nasties and I have to take folic acid six days a week to offset some. Anyway on one of my overnight hospital stays they ,as usual , put the purple tag on my wrist and when it was time for my tabs. they gave me all bar the methotrexate . Next thing I know a young nurse comes in dressed in purple gown,purple mask and purple gloves just to hand me the methotrexate tab. I started laughing and said OMG its the purple people eater. He was a bit young to have heard the song.
May 11, 2021 at 1:07 pm #30048
May 11, 2021 at 5:19 pm #30057
Hi Jen, I hope all is well with you. I am getting a heart cath tomorrow morning (5/12/21) at 8am. I should know at that time if the meds are working. Keeping fingers crossed.
May 12, 2021 at 10:24 am #30068
Keeping all crossed and sending positive thoughts and prayers your way today. @brian. I hope, too, that you will have some good news after your RHC. Please pop in to update us on how things went for you.
I know some PH docs tell you before you go home. Others want to schedule an appointment to go over the results.
Whatever it may be, please update as you can.
May 12, 2021 at 7:51 pm #30079Carol VolckmannParticipant
Hi Brain, I am just catching up on your post. All the advice and support you have received has been fantastic. I know when I first went onto this forum, I knew I had found so much really good advice and unconditionally loving support.
Reading your first post the only thing I might help your wife is to participate, go with you to your appointments for she also needs to know all the steps for you and I am sure she also will have her own questions. You two are a team.
Automunine disease can and often does cause PAH as in Sclaraderma. When I was finally diagnosed with PAH after being misdiagnosed for 5 years my new Pulmonolgist had me see a Rhumotologist who specialized in autoimmune diseases that are the cause of PAH and others.
My team consists of a Pulmonolgist, a Rhumotologist and Cardiologist and they all work together. To date my Rhumotologist does not want to put me on any meds for Sclaraderma until I show symptoms that would require it. As he puts it, “…why put poison in your body when you don’t need it right now…” I have been with him for 17 years along with the Pulmonolgist and Cardiologist.
So I would consult with all three of your docs before adding meds.
Hope your RHC went well so keeping my fingers crossed for you and sending you positive energy and vibes! Do take very good care of yourself 😊
May 16, 2021 at 2:08 pm #30156
I had my RHC on 5/12/21 and there is significant improvement with the meds. My PA pressure has dropped from an initial reading of 50 on 2/8/21 to 30. I have not met with the cardiologist to discuss his findings yet but I was able to access the report from the hospitals patient portal. One bit of bad news I was able to pull from the report is the discovery of a small left to right intra-cardiac shunt at the level of the right atrium.(this was not found with my 1st heart cath in february). According to the notes, the cardiologist wants to do an MRI to further evaluate the shunt. I don’t know the significance or if I should be overly concerned, but will be meeting with the cardiologist in 2 weeks to discuss the results. Based on my own research, I suspect this may be congenital and may be what led to the PH(but this is merely speculation on my part). I seem to be learning more about this disease on an almost daily basis.
June 16, 2021 at 10:38 am #30789
I have not seen any posts from you and wanted to check in and see how things are going. How are you feeling?
Per your last post, things were going better, so I hope that this has continued as you and your family adjust to PH and your “new normal”. Please let us know how we can best support you.
May 17, 2021 at 12:59 pm #30160
Hi @brian, I am happy that you did have your RHC. Even more excited to hear about some improvements from your PH treatments. Are you feeling any relief at all? I ask because symptoms and numbers do not always align.
Those patient portals share our results faster than our medical team has to review them. I love mine, but other times, I have anxiety and want to know more, and now, LOL.
The cardiac shunt at times can help as a relief valve in those with PH. Often, yes, it is congenital.
I know waiting for 2 weeks is the worst part. Our minds like to ponder. But with your improvements in pressures with the RHC, I would stick to that positive news. The cardiologist will offer the best information regarding your shunt.
I am happy to see your post. I hope that you are feeling better, @brian. Please do keep us updated.
Do you have any questions for us? How is your family doing with this information?
May 17, 2021 at 1:01 pm #30161Colleen SteeleKeymaster
@brian thank you for updating us with the good news! It sounds like you were placed on the perfect treatments for you. As time passes dosages increases or even decreases might happen and that is very common.
We will be anxious to hear what the MRI turns up and the doctor’s thoughts and plan regarding the shunt. Perhaps we have some members who can share their experience with this and offer you questions to ask your doctor about it.
I was re-reading your previous posts and am curious about the aloe vera. You mentioned, “Drinking shots of aloe vera seems to help with the heartburn, without the adverse effects of antacids.”
I never heard of this before and was wondering if you can elaborate. In what form do you get the aloe vera? If you haven’t already, make sure your doctor knows you are taking it.
May 17, 2021 at 5:50 pm #30174
I will also be interested with your MRI result Brian.
I had the same when I had my RHC and had a subsequent MRI to check. False alarm. Oh be prepared for a L O N G E R than usual lie down in the tunnel and lots of “breath in …breath away”
May 18, 2021 at 11:08 am #30182
Excellent reminder, @terry. I had an MROI recently and the breath, hold your breath, breathe, is not one of my favorites. That and having to lay almost flat causes anxiety for me.
@brian, if you think that you may be anxious, ask for something for anxiety to take before your MRI. We all look forward to hearing about the results after this MRI is done.
May 17, 2021 at 5:53 pm #30175
aloe vera juice, I drink about 2ounces at the first sign of heartburn. https://www.walgreens.com/store/c/walgreens-aloe-vera-juice-aloe-vera/ID=prod6011869-product?ext=gooKBM_PLA+-+Vitamins+%26+Supplements+(2019+Update)Walgreens__pla_online&gclsrc=aw.ds&&gclid=CjwKCAjwqIiFBhAHEiwANg9szjD8SoEakG63_FbytRj6aNCNUumOqC5uvZk5zXtXZdaGEei1Ir18_hoCVeAQAvD_BwE
May 18, 2021 at 11:05 am #30181
Hi @brian, I have heard of people drinking aloe vera juice for other reasons. This was years ago, but I have seen it being sold at local pharmacies and big stores like Walmart, too.
I did find this link which discusses the benefits of aloe vera juice. But of course, as Colleen mentions, let your PH team know to be sure that nothing will interact with your meds. A
It also says that it tastes great. @brian, do you agree? Or is it one of those things that are nasty to get down?
May 17, 2021 at 6:19 pm #30177
I forgot to mention above Brian there is one session of ‘breath in ,breath away ‘ where you will start wondering if they have forgot to tell you breath away and your lungs are bursting and you start thinking that if you breath away before you should does this mean they start all over again. No worries mate they have not.
June 17, 2021 at 10:13 pm #30806Aunt LizzieParticipant
Isn’t it strange how some people’s reactions can be so different. I’ve been lucky. My extended family treat me as though I am not able to do a lot of things now – PH and old age. I get a lot of, here sit down, or, let me do that, when I am more than capable. I don’t resent it, I just laugh. Before I was diagnosed with PH about 8 years ago, I was unable to walk any distance and kept fainting and knew I was getting worse. So a diagnosis of severe PH with pressure of 53, and heart failure was actually a relief and once I got the right pills, then 12 months later a pacemaker, I was back to almost normal. Most days I forget I have this thing, but if I get the flu or a bad cold, OR the second Pfizer jab, my pulse goes up to about 120 and sits there, just to remind me I am at risk. Hang in there Brian, there’s a lot of good advice in this column.
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