The good news... and the bad...

[Abbanabba]

Aaaaarrrrrgggghhh!!!! What a miserable and frustrating morning!!

I saw my cardio this morning and the latest news is that my heart is "fine" and the symptoms I'm exhibiting don't have much to do with the valve that needs replacing.

12 months ago I needed a replacement soon and now they're telling me that I may need it done in 3-5 years because the latest round of tests contradict the ones that were taken earlier.

Don't get me wrong.... I'm hardly bursting at the seams (pardon the pun) to go in for surgery, but I had everything else I could think of that might have been causing these symptoms tested and the results all came back hunky-dory.

Then he tells me I'm depressed because I started crying in his office - well DUH!! My health has been in decline for the last 2 years, I finally think something is going to be resolved and now find out that it's not, and because of the bloody weather, I've had bugger all sleep in the last week. No wonder I'm feeling miserable!!

He also put my SOB (..and pretty much everything else I've been experiencing..) down to anxiety over my heart. I tried to tell him that I was experiencing all of this BEFORE I had even considered my heart might be the problem, but seeing that I'm clearly a paranoid, sleep-deprived, chronically depressed, hypochondricac, what would I know?! If it's not my heart causing all these problems, then what the hell is...?!! I'm running out of ideas here.

None of this changes the fact that I am still so exhausted I can't do anything, that I still can't climb more than 4 stairs without gasping for air, that I'm still getting dizzy spells whenever I stand up, yada yada yada....!! I can't see how all of that can be put down to depression and/or anxiety. I also thought that most people with anxiety had elevated BP and heart rate, whereas mine are on the low side of average (..although I'm more than happy to concede that I could be wrong on that one..).

So now I don't know what to do. I'm really feeling kinda lost.

Anna : (

 

[KLashbrook]

can tell you are really frustrated and know how that feels. Have went thru a lot of the same things with hubby in past year. Lots of frustrations. We found out in July of 2002 that he had Pulmonary Hypertension which was one reason for his shortness of breath and degenerating health. We had never heard of PH until then. Have you been checked for PH ? His was found when they did a heart cath, they weren't looking for it.

 

[Abbanabba]

Have you been checked for PH ?

I really couldn't tell you, but I had a quick look on Google and found the following:

Primary pulmonary hypertension (PPH) is a rare disease of unknown cause that results in the progressive narrowing of the blood vessels of the lungs, causing high blood pressure in these blood vessels and eventually leading to heart failure. In 2000, there were 3,065 deaths attributed to PPH. Secondary pulmonary hypertension (SPH) is the result of other types of lung disease, abnormal breathing processes or heart disease.

The true incidence of PPH is unknown. However, it is estimated that there are one to two cases per million or 300 new cases per year. In 2000, there were 163,000 hospital discharges in which one of the diagnoses was PPH. It is more common in women between the ages of 21 and 40; however, it can affect anyone at any age.

Initial symptoms of PPH may be very minor, and diagnosis may be delayed for several years until symptoms worsen. Typical symptoms may include:

shortness of breath following exertion
excessive fatigue
dizziness, fainting, and weakness
ankle swelling
bluish lips and skin
chest pain


Seems to me that I have just about all of the above symptoms. Curiously it doesn't idicate if general high blood pressure is a symptom or not. I didn't know if high pressure in localised blood vessels would make a difference to the overall reading, but again, my general BP is on the low side. Did you husband have other cardiac issues prior to his dx, or was this something totally out of the blue? How are things going with him?

Cheers
Anna : )

 

[Abbanabba]

Hmmmm, just pulled up my 2002 Doppler:


Right Ventricle:
The peak TR velocity is 2.8m/sec corresponding to a pulmonary artery pressure of 41mmHg (assuming RE pressure = 10mmHg) consistent with mild pulmonary hypertension. The right ventricle is dilated and hypertrophied.


I can only assume that "nothing has changed", but clearly the potential is there. I might have to try and get my hands on the latest reports. This was from my previous cardio, but as far as I know, my current one has all of this info.

 

[KLashbrook]

General high blood pressure is not a symptom of PH. With PH you can have abnormally high pressures in the pulmonary arteries and still have normal BP readings generally or systemic. Yes, hubby had other cardiac issues prior to his dx of PH. He had 4 open heart surgeries before age 2 because of TOF. That was in the pioneer days of congenital heart surgeries. He is now 39. He went for years without problems until the past couple of years when seems like everything started going awry at the same time. We thought he would have heart surgery last June to replace pulmonary valve; that's why they did heart cath (usually have one of those prior to surgery)and that's when they found pulmonary pressures were too high to risk surgery at that time. So, he's been on medications for PH and waiting for those pressures to come down to have the valve replacement. We will be leaving for hospital in a couple of hours. Long awaited surgery is being done at 8am this morning!
Best of luck to you in finding out what is causing your problems. You will be in our prayers.

 

[Abbanabba]

Good luck to you and your hubby! I hope everything goes well and I'll be sending positive thoughts to both of you.

Anna : )

BTW - I'm a TOFer too.

 

[Ross]

Anna is seeing another Doctor an option you can pursue? Seems to me that you really need another opinion or at the very least, someone else to give you a work up.

A buddy of mine in your country sent me a voice mail message and said it was 102F and very very dry there. He went on to say that the low that evening was a very cold 80F at 3 am. If it's that hot there woman, I do hope your sitting in air conditioning or your in for a very rough time.

 

[SJJ]

Anna,
What a nightmare! I'm with Ross, if possible, try to get another workup. It's odd to me that they're quick to throw out you prior test results as inaccurate and not consider that perhaps the latest tests are in error. So sorry you're going through all these frustrations.
Sue

 

[Nancy]

Anna-

I am really in awe of your latest medical opinion. If I were you, I would run, not walk to get a second opinion. And I would make sure the second opinion was someone who has excellent credentials. You are having SYMPTOMS, and they should not be dismissed.

I see in your last post here that your echo showed "mild pulmonary hypertension". That means a great deal, combined with all of the other potential problems.

Echoes are considered unreliable in diagnosing pulmonary hypertension. They only give a "guesstimate" of the actual numbers which can differ quite a bit when compared with a right heart catheterization (the gold standard for diagnosing PH). It is also possible that your pulmonary pressures increase upon exercise, and with some people, it is a significant increase.

If you can go for a second opinion, you should ask to have a thorough evaluation of the PH finding by a genuine PH specialist. Regular cardiologists do not see enough people with PH to be able to adequately care for them. Plus specialists have access to PH specialty drugs that other doctors don't.

Get it evaluated. PH can progress and if not treated, it can be devastating.

My husband almost died from it last year, until he finally got some specialty medication which helped.

 

[Kathy]

Anna,

I am so sorry that your cardiologist treated you with so little respect. Unfortunately, I don't think it is all that unusual that women are treated as "hysterical females". As I recall, it was Freud that initiated that diagnosis.

I know it has happened to me several times. Ironically enough, I have the opposite problem. I am a person who consistently ignores and denies medical problems and forges ahead.

I hope that you will be able to get a second opinion. Is the cardiologist that you just saw the same one who had said that you would need a replacement 12 months ago?

 

[Bryan B]

Anna,

You making me start to wonder if my cardio goes down under to see patients in his spare time!

The first time I saw him he said I definitely need surgery, but then turns around and says my symptoms are related to anxiety. I can definitely relate to your frustrations, but unfortunately I haven't figured out a way to deal with it that I can pass on to you. I have had "bouts" of anxiety over the years during difficult times and have told him I can tell the difference between my anxiety symptoms and the ones I've been experiencing lately...but it fell on deaf ears.

Just hang in there, and you can PM me anytime...I'm all too familiar with the frustrations you are going through right now.

 

[medtronic of borg]

I agree in having a second Dr. work you up. Something is odd, but then again they may be right? Do you tend to go to the Dr. office often? Have you ever been treated for other medical problems?

Listen I been lucky enough to have crossed my lifes path with a wounderful, delightful woman that I love dearly. She lives in Auckland. She may know of a good Dr. Near to you. Her name is Janet Phone her 86907. Just remain calm with her.

Med

PS She is a Dr of medical research.

 

[Harrybaby666]

Hi Abba!!!!!!

Hi Abba!!!!!!

Hi Abba,

Boy do I EVER know what your going through..I am going through the same thing with my cardiologist and I know it's not pretty. I had a rough battle with CHF this past week and do you think that the doctor would listen to me? NO! I filled up with fluid around my lungs and heart and couldn't breath, so I went to Urgent Care, and they said they didn't know, so a friend of mine suggested that I try doubling my Lasix (Diuretic, water pill), so I did, and BAMM!! The next day I was starting to breath a little better, and I was passing a ton of fluid. It has taken a few days, but I am doing somewhat better, and hope this trend continues. I hope that you will get the medical attention that you have a right to and deserve, and soon. As always I am thinking of you...Take Care, Harrybaby666

 

[Abbanabba]

Thank you all SO VERY MUCH for your thoughts and support.

The cardio I saw yesterday will be sending his "report" through to my GP (..which I suspect is to tell her to check me out for depression, more than anything else..), so once I get back home I'll go in and see her and share my thoughts with her about the PH. I don't know if we have any PH specialists in this state, but I WILL make sure I see one even if it means flying across the country.

Kathy-
Yes, the guy I saw yesterday is the one who wanted to have me in for surgery initially, but after my last MRI, he, the surgeon and the MRI technician all had a pow-wow which is when they decided that things were all hunky-dory. Grrrrrrrrr!! So frustrating!! Like you, I'm also the sort of girl who only goes to the doctor if I'm practically on death's door - and then only if someone drags me kicking and screaming That's why I get so upset when they brush things off as depression and anxiety!!

Bryan -
Totally agree!! You know when you're upset over something - and why. I mean I HATE hospital environments with a passion, so my anxiety level was through the roof by the time I had my consultation, but that tends to be my exception to the rule. So after a spell of bad sleep (..mainly due to the nasty weather - and Ross, it's seldom getting below 90 overnight and the humidity has been up around 80-100!! Which isn't so bad when you don't have blackouts and actually have power to run aircon and fans..), the anxiety of being in a hospital for my consult, and then finding out they can't "fix" my problems, it's no wonder I was upset and in tears!!

Anyhoo, I'm off to the David Bowie concert in Melbourne next week, so that, and the fact that the shopping is great and my best friend lives there, should really help to lift my mood (..and didn't I have some serious retail therapy yesterday!! ..).

Again, thank you all for your support - I'll keep you posted on how things go.

Cheers
Anna : )

 

[Nancy]

Hi Anna-

Here's a link to the Pulmonary Hypertension Association. If you post there, you will get lots of information. There might be someone there who would know of a specialist in Australia.

http://www.phassociation.org/Message_Boards/main.asp?board=1

 

[Abbanabba]

Hi Nancy,

Thanks for the great link - I read over some of your "old" posts while I was there (..they're just as chatty as we are here! ..).

I posted my story and have already had a couple of Aussies respond, which has been great. One of them lives in Melbourne, so I may be able to chat to her while I'm there this week (..I just sent off an email to that effect..).

Meanwhile, I've since had a couple of nights of decent sleep (..it's finally cooled down for a bit - YAY!!! ..) and now that I feel I have some direction as far as my symptoms go, I really am feeling so much better about everything.

It's odd to me that they're quick to throw out you prior test results as inaccurate and not consider that perhaps the latest tests are in error.

Sue -
I'm wondering if the effects of mild PH is what made them take a closer look at things initially, and then upon finding a dicey valve they've then come down with a case of "tunnel vision". After all, I didn't go to them asking for a valve replacement, so clearly something was showing up in the original tests .


Harry -
sounds to me like you might have had a case of pericarditis; the sac around the heart fills up with fluid and it's often difficult to breath, particularly if you are lying down or sitting back. I had a weird episode like this not too long ago that lasted for about 4 days (..only I couldn't get in to see a doctor..). When I told the cardio about it on Friday he said "it could've been pericarditis... or it could have been reflux (!!?)". Hmmmmmm - don't know what he's been eating to get heartburn like that!!!


Glad I'm not the only one here who is feeling these frustrations - not that I would wish them on anyone else, but your support and understanding has really been a godsend.

Best wishes to you all
Anna : )