Can you cross a line when advocating for your self?

[Colleen]

@traceyaustralianmigration-co-za this angers me so much I wish I could hop on a plane and help advocate for you. Honestly it sounds like both doctors are failing you. I get the feeling your pulmonologist agrees with you but for whatever reason is afraid or not able to stand up to the pulmonologist.

Is that the only pulmonologist at that care center? Could you request someone else?

The only other thing I can think for you to do is if you have them, print out previous times over the years that you needed the infusion and times when reducing immunosuppressants went bad. Highlight them, gather them up, request a consultation with BOTH doctors present and flat out ask how they think his plan is really going to turn out for you.

I’m so sorry!

[jen-cueva]

Oh no, @traceyaustralianmigration-co-za, you have me at the edge of my chair. I am so darn enraged at these doctors! They are both not helping you at all!

Can they not have a conference call or something with you involved as you advocate for what is needed? Colleen and I would be on a plane and there if we could help advocate for you, my PH PHriend.

I’m so sorry you are going through this while having bronchitis. Colleen offers excellent tips, too.

Extra big hugs, love, and prayers that this will be resolved and you can get the needed infusion and not decrease your immunosuppressants as you’ve been there, and it causes horrible outcomes!

[Tracey]

Hi @ colleensteele, hi @jenc  you know it just makes me feel better knowing that I’ve got the two of you on my side.

This morning I decided to go to the GP in the village over from us. She is a no nonsense, tell it like it is doctor and we get along quite well. She got hold of the pulmonologist and told her this is now beyond ridiculous and I need immediate attention. So I’m being admitted tomorrow. The GP mentioned that there is apparently a bad swine flu out break and she  thinks maybe the pulmonoligist was trying to keep me away from the bugs, without realizing how serious this is. Heck, I’ve probably got swine flu!!

In the pulmonologists defence, she is actually a lovely person and normally listens to me. I think that’s why this has thrown me because she’s normally the most supportive doctor I’ve got,  I’ve always turned to her when I’m having trouble with other doctors. If there is a swine flu out break she’s probably super busy. Maybe I didn’t get across enough that she needed to make me a priority. But sbe knows now and she says we’ll sort everything out once I’m in hospital.

I have this horrible habit of downplaying how sick I really feel and I need to stop doing that. I never want to put anyone to any trouble, so I sometimes don’t always get across the seriousness. I’m that person who for the last 6 weeks has been telling every client that phones that I’m fine even when I can hardly talk through all the Gung in my lungs and my throat and nose. I’ve been told more than a few times recently that I most certainly am not fine. I hate complaining and I don’t want to have people worry about me..

I complain here because it’s safe and I value your input so much,and I feelnsupported and heard and understood.  But in the healthy person world I don’t like to talk about being ill or complain. Only a small handful of people in my world actually know the extent of my illnesses. I even manage to downplay lugging a poc around 🤣

I’m going to cuddle with the boys now because I don’t know how long I’ll be away..

Thank you for being such amazing PHriends – I’d love to see you two stepping onto the tarmac at one of our airports. We can dream ☺️🫁🫀

[Colleen]

@traceyaustralianmigration-co-za Way to advocate for yourself by seeing the general practitioner! I feel relieved that you will be getting the help you need. I’m sorry it means a hospital admission but hopefully you will walk out of there feeling much better or at least on the road to recovery.

[jen-cueva]

Well done, @traceyaustralianmigration-co-za! I love that you self-advocated, and although you’ll be admitted, you will get the treatment and care needed.

The boys will miss you, and you will miss them. But in time, you’ll be back and hopefully feel better, my dear PHriend.

I’m sending you extra big hugs, love, and prayers. Please keep us posted when you can and are feeling up to it.

[Carol Volckmann]

Tracy me so anger you you are having such a difficult time with your Rheumatologist who does not seem to listen nor treat you!!!

I am so glad you stood up for yourself and got a hold of your GP who did advocate for you!! I wonder if she would give you a recommendation for a different Rheumatologist and Pulmonologist?

It really okay to let people know you do have health issues. Since you are a bit uncomfortable letting the doctors know what you need, you might think about writing them down before your appointments and can go over them when you are in their office.

Please know you can be your best advocate if you allow yourself to be.

I think I will hop on that plane with Colleen and Jen and cheer you on!

Cuddle uobwith your boys and let them know you will be home feeling a lot better. Sending you warm hugs and positive energy! 🤗 😊❤️

[Jerri Modrall]

I am so sorry for this treatment, but it is such a common occurrence. I think and think about we can change this situation. It drives me crazy.

[jen-cueva]

Hi @modbod115, you are correct. Too often, occurrences happen, as Tracey experienced. It is so darn frustrating, too.

How have you been managing PH and your other coexisting conditions? You have several to balance, so I know this can be challenging.

Hi @traceyaustralianmigration-co-za, thinking of you and sending you extra love, hugs, and prayers, my dear PHriend.

[Tracey]

Hi all, thanks for the support it honestly does help. So turns out I have Covid. Got to say that never even crossed my mind. I’m not sure who was more shocked, me or my obviously contrite pulmonologist.

Lots of meds on board now, and I have to say I’m already feeling a bit better. But there us a talk to be had between me and the pulmonoligist who I don’t think is ever going to try and downplay anything again.

 

[jen-cueva]

Hi, my dear @traceyaustralianmigration-co-za; I’m sorry to hear you have COVID. Grateful that you went in and started some treatments; you already feel relief.

Manny and I both had COVID again around Easter, but thankfully, it was nothing like my first bout.

I’m incredibly proud of your self-advocating, my PHriend! Unfortunately, it sucks when we have to go through these struggles, moreso when our medical team isn’t listening!

WTG, my thoughts, hugs, and prayers are with you, sweet PHriend.

[Colleen]

@traceyaustralianmigration-co-za I am so sorry to hear that you have Covid but so glad you found the answer (thanks to self-advocating) about your recent decline. I sure hope that doctor took time for a long pause to evaluate how he handled your recent care…or how he didn’t handle it! I hope you start feeling better soon!

[Carol Volckmann]

Tracy, so good to hear that you are on the right meds and feeling better!  Certainly you did not want covid, but you now in recovery mode.

I sure hope your Pulmonologist has learned a hugh lesson – LISTEN to your patient!

Sending you lots of positive energy, quick recovery and getting your doctor’s working as a team with you! Big Hug!

[V.R. Peterson]

Tracy, I’m sorry you have COVID, and I wish both those doctors had taken you seriously much quicker. I’d like to hop on a plane and kick their collective rumps.

You asked if it’s possible to cross a line when self-advocating. When one has a serious illness like PH, no! When one has immune issues on top of that? H-E-double toothpicks, NO! It simply isn’t possible to cross a line when you know something serious is going on. You absolutely have to take any possible action to get the doctor(s) to understand why it’s more serious than they’re assuming. I’m praying that you feel 100% better soon. 🙏🏻

[jen-cueva]

Well said, @mamabear007! I echo your thoughts to @traceyaustralianmigration-co-za. Tracey, I hope they are taking excellent care of you and you can return to your boys soon.

Hugs, love, and prayers are with you from San Diego. Please update us when you are feeling better.

[DeLois Tweedy]

Tracy, I am so sorry that you have Covid, but am glad you and the doctors know now, so it can be addressed properly. Sincerely hope you are on the road to recovery very soon.

I absolutely do not think you can “over” advocate for yourself. For too much of my life, I was the kind of person that was always afraid of hurting doctors’ feelings or making them feel like they didn’t know what they were talking about. Going back to 2020 when I was having fluid drawn from around my heart, and I didn’t know I was in the world for 4 days. They had knicked my liver and I went into hemmoraghic shock, though they didn’t know what was wrong at that time. A CT scan was finally done quite a few hours later and they found the problem. In the meantime, they called my family in and said “she’s not going to make it, we see no way she can make it.”

To shorten the story, when I had stabilized enough,  I was airlifted to a big University hospital, where thankfully I pulled through after a month there..

That was a turning point in my life medically speaking concerning self-advocating. We know our bodies better than anyone else and I make sure to state that when needed.  Again, I pray things look up for you from this point on, and that you get the care you need and the care you know works for you. medically speaking.

[Debbie Moore]

@traceyaustrailianmigratio-co-za I’m so glad you are on the road to recovery from COVID.  It is a terrible thing to have.  I’m chiming in a little late in the conversation, but you said in your original post that you’ve been dealing with your autoimmune disease for a long time and you know what works and doesn’t.  My daughter has an autoimmune disease and has dealt with it for 16 years.  She is very aware of what her body is telling her and how the drugs affect it.  Just like you.  If her doctor tells her she wants to do something different and my daughter knows it’s been tried before and the result, she will tell the doctor no.  She will discuss why, but it is her body and she can say no.  My pulmonologist wanted me to try a  medication I had tried that didn’t work.  I did when I knew it was not going to work.  Big mistake.  I should have said no.  I think we have the right to say no.  I say no to my GP all the time.  We discuss why I think the way I do and he tells me why he believes the way he does.  He accepts when the answer is still no.

All this being said, you know your body and what you need and don’t need.  Let it be known to the doctors.  Put your foot down when they give you the run around.  You are important.

[jen-cueva]

Hi @debbie, I didn’t realize your daughter has been battling an autoimmune disease for 16 years! How is she managing currently? That’s a lot on one’s plate; she must have been diagnosed early and so young!

Like you, I believe we know our bodies best. As I noted in one column, “we are the expert on our bodies.” . I also share my thoughts, and when I disagree, I explain why and usually, most of my medical team agrees with me. Unfortunately, some take a little longer to grasp they are the expert in their field, not my body.

Kudos to you for self-advocacy! That takes so much energy sometimes.

[Debbie Moore]

She was diagnosed at 19 with myasthenia gravis.  She is doing well.  She started a new job and is adjusting to the hours, so weekends are her total resting days.  She worked the same number of hours at my store, but she had rest time in between them.  She helps me so much in understanding having a disease that has changed my lifestyle.  Unfortunately she had to go before me to help me cope with PH.  She’s the one who taught me the spoon theory (which I still have problems following), that it’s ok to rest and not do, and that life is still good just different.  I love that girl!

[Colleen]

@debbie you and your daughter sound like a remarkable team. Don’t sell yourself short. I’m willing to bet you help her cope and thrive as much as she does for you. Thank you for sharing a bit of her story with us and how it has left its mark on yours.

[jen-cueva]

Wow, @debbie, you and your daughter are a wonderful duo. You both are strong and certainly help one another as you manage rare diseases.

It’s amazing what we learn from our kids. I’m grateful you have each other and make such a Dynamic Duo! I echo Colleen’s thoughts that you help her in more ways than you realize!

Now, listen to your daughter and recharge when your body needs it! Thanks for sharing some of her stories with us as we learn how you help one another.

I feel the love in that post, and my heart beams with joy!

[Jerri Modrall]

So sorry for all of our woes is trying to take care of ourselves.  With that in mind, I have a simple question—-can a doctor just take away a diagnosis of CTEPH and tell me I no longer have CTEPH?

[jen-cueva]

Hi, @modbod115; one of our fantastic forum members, @mamabear007, shares some informative information. She shared her thoughts and experiences as a caregiver to her son when he had PTE surgery.

Unformatuanetly, she has trouble posting, so I’m sharing for her. She said, “@modbod115, if you had the PTE surgery — and if they got all the clots and your pulmonary pressures are down to normal — it’s possible that you don’t technically have CTEPH anymore. Even then, the doctor will likely keep you on anticoagulants to keep new clots from forming.

If you didn’t have PTE surgery — and if your clots were diagnosed with a VQ scan — it’s unlikely to be cured from CTEPH. While the BPA (Balloon Pulmonary Angioplasty) can greatly reduce pressures, there are no studies that indicate this procedure is a permanent solution. One other possibility… If you’re on medication for CTEPH (like Adempas), your pressures may be reduced to normal. I don’t know if the medical community considered this a cure, but I suspect not, because the pressures will increase if the medication is stopped.

There is another question for you (which you don’t have to answer here; it’s just to help you figure out if the original diagnosis might have been incorrect). There are two tests that can detect clots, the VQ (ventilation perfusion) scan which will detect old calcified clots. If you were diagnosed with a VQ scan, anticoagulants can keep you from forming new clots, but they won’t dissolve the calcified clots. If you were diagnosed with a CT scan, that test is more likely to detect newer clots that can be dissolved with anticoagulants (though CT scans can occasionally pick up calcified clots). If you were originally diagnosed with CTEPH, I would ask your PH specialist why he thought you had CTEPH at that time (and if you didn’t have PTE surgery, why does he think those clots dissolved). If you haven’t had a VQ scan, I would insist on getting one. That test is the gold standard for diagnosing CTEPH, and CTEPH can’t definitively be ruled out without the test.

While I’m not a CTEPH patient, my son *is*. He had PTE surgery that removed most the clots, but not the deepest tiny clots. While he still technically has CTEPH, the surgery reduced his pressures from well over 100 to 27. If you have any further questions, please feel free to ask me publicly on this forum or in a private message (whichever is more comfortable to you).”

Thanks @mamabear007 for your detailed information that will help Jerri as she continues her journey.

[V.R. Peterson]

Thank you, @jenc, for posting this. Hopefully, this information will help @modbod115/.

[Colleen]

@mamabear007 you are fabulous! Thank you as always for taking the time to help a fellow PH member!

[V.R. Peterson]

@ColleenSteele, it’s my absolute pleasure! 💜

[jen-cueva]

It’s my pleasure, @mamabear007, to share this with you. You are always so supportive of the PH community. We all are incredibly grateful to have you here in the forums.

Hava a wonderful week ahead!<3

[Randolph Reynolds]

Tracy’s story is horrendous but she is an example of someone who keeps up the fight and knows what she needs.  In a previous posting I talked about my week experience with double pneumonia in the hospital and how for every nurses shift I had to expalin what PHA was and why I needed to have certain things considered.  That was a nightmare experience and one that underscores my claim to being a poor patient.  I was getting to the point of ordering some of the staff around.  Of course they were understaffed (had a trainee one night by herself), the hospitalist (doctor) was pretty much useless and eventually I began recovering when I got home.

I don’t know what South Africa’s health care program is, but it seems to me that concern for the patient should be top prority when there are multiple issues.  Our responses to medical misdirection have to be aggressive.  I’m not sure what the line is but if its being benign as a patient I always cross it.

Cheers all

[Colleen]

Well put @ripple76 . When we are at clinic or hospitalized we are literally there for our health, not to make friends. I say do what you need to do to be heard and properly cared for!

[jen-cueva]

Hi @ripple76, well said! I love that you remind us that“patient should be top priority when there are multiple issues.”

Unfortunately, self-advocating is needed almost daily in many of our lives. There may be a fine line, but that’s after the patient’s health is a top priority! It shouldn’t matter what type of setting or what our geographical location is; it should be a minimum standard, in my opinion. I’m sure my background working as a nurse impacts my intense frustrations in these situations. I was taught to treat others as they were my loved ones. Sadly, some in the healthcare world missed that point along the way. That or they are significantly understaffed, and the HCPs are burnt out.

@traceyaustralianmigration-co-za, how are things going with your recovery? I hope and pray you are feeling more like yourself.

[Tracey]

Wow everyone, you all give such great advice and insights!! Thank you for making making me feel like I’m not being a brat by insisting on the quality of the care I am teceiving.

@jenc, I got home last week, took a few days extra off and back to work. And believe it or not woke up sick again this morning!!! I’m beyond frustrated, I did not receive the medication I need for my immune system. No amount of me insisting on it has done the job. We sort of came to a compromise that I will get weekly injections of immunoglobulins. I was discharged without a prescription for the injections and have spent all week trying to get a script.  Honestly I’m almost at the point of tears with my frustration. I was thinking to myself earlier that I’m not sure what needs to happen before I become a priority. Do I need to be found in a heap before something happens?

I just feel that I’ve got no choice but to try and find another rheumatologist and they are so scarce in South Africa. I’m actually considering moving 1500 kms across the country because I know there is an excellent PH center in Cape Town (the only PH center in Africa). I’ve also heard good things about a rheumatologist in Cape Town. I’m infuriated that I have to consider giving up the life I love because I have the misfortune of being sick. I’ll never be able to recreate my life in Cape Town, it’s just too expensive and honestly these illnesses have already stolen enough from me.

I’m just not sure when it became ok to do the barest minimum in patient care. The rheumatologist never even saw me in hospital.

Anyway I’ve just taken a Xanax because I’m just so upset and I already feel lousy enough without feeling like I don’t matter.

[Colleen]

@traceyaustralianmigration-co-za you have been on my mind so often lately…maybe I sensed things weren’t going well. I’m so sorry!

It infuriates me that the rheumatologist never popped during your hospital stay! A lot that you shared infuriates me but your upset enough, I wont add my rant to the mix.

Just know how much we care about you here and for what it’s worth, I will be praying that whatever you need to do to stay well works out best in the end for you.

[Carol Volckmann]

I am so sorry and so angry Tracy for all that you are going through without help from your Rheumatologist!

Is there a means for you to give hospital/clinic feedback what you have been going through?

Tracy I just pray that one of your other doctors can reach out to help you with this Rheumatologist and that you are able to get the care and attention you deserve.

My heart goes out to you. I know you are very strong and a omehow you will get through this nightmare. Sending all the positive vibes for best possible outcomes for you. Please know how many of us are praying for you and are there for you to reach out to. Sent with LOVE.

 

 

[jen-cueva]

Oh, my dear @traceyaustralianmigration-co-za, my heart is broken. Please know that despite the care you are receiving, you are worthy, loved, and cared about by many.

Your story is, unfortunately, not uncommon. The entire healthcare system across the world could use some improvements. But, like Colleen, I will leave it at that.

I am keeping you close and sending you extra love and prayers to make whatever decision is best for you. Your health is a top priority.

Thank God for meds like Xanax so you can try and relax as much as possible. With all going on, I know it’s not easy. <3