Heart problems? --

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dragonfly-2
Regular Member


Date Joined Feb 2006
Total Posts : 437
   Posted 3/9/2008 5:07 PM (GMT -7)   
I had an echocardiogram last week and just got the results--I have a dilated right ventrical, tricuspid regurgitation, and mitral valve regurgitation. I also have elevated pulmonic velocity. From what I can gather, I have pulmonary hypertension. (My pulmonary artery pressure wa 28 with the upper limit of normal being 14) Does anyone have any experience with any of these problems or issues? My rheumatologist just mailed me a copy of the results without exlaining them at all. Any experience or advice would be greatly appreciated. From what I've been able to piece together from my google research and talking to other doctors/nurses, these results explain a lot of the idiosycratic problems I've been having. Tricuspid regurgitation is often associated with enlarge/dilated right ventricle and this combination can cause liver problems, which I have and which have been getting worse over time. Also, I have unexplained swelling of my ankles, hands, feet, face, etc., which is consistent with these kind of heart issues as well. I just don't know really what this means or how it will affect my life. Everything I've read said that pregnancy is very dangerous with these kinds of heart issues and dh and I were hoping to do an IVF cycle this summer. My rheumatologist is adamant that getting pregnant would put my life at risk and she felt this way before the problems with my heart.

I'm sorry this is a novel--I just feel lost in my malfunctioning body.


Amy
**SLE since April 1987, age 10 with suspected TIA, neuropathy, joint pain, fatigue. Lupus Nephritis, October 1992, Remission 1993-2000 Major Postpartum flare, 2000-2002, haven't been the same since.**Current symptoms: clotting disorder, vasculitis, joint pain including avascular necrosis in my hip, fatigue, high blood pressure, edema, liver and lung infiltrates, mostly likely caused by the lupus. Meds: CellCept 1000 mg/2x day, Plaquenil 400 mg, Lisiniopril 10 mg, Encora (a prescription Vitamin supplement), Prevacid, 2 x 30 mg day, Xanax ER 1 mg, Xanax .5 mg, PRN, Cymbalta 90 mg, Singluair 10 mg, Zyrtec 10 mg, Potassium Citrate 2 x day. Asthmanex, Advair 250/50, abuterol PRN, Cinnamon 500 mg b. i. d., Flax seed oil 2 x day, lycopene q d. **Chronic anemia, migraines, GERD, Bile reflux, asthma (or lupus induced lung problems), Chronic Pelvic Pain, unexplained infertility x 10 years with one biological miracle son and one adopted miracle daughter!**


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/9/2008 5:26 PM (GMT -7)   
((((((((Amy)))))))), I'm so sorry you are going though this. I don't have much I can say about this other than I do have a slightly enlarge right side heart with some stiffness in it. Due to my lung problems which my doctor says is due to my autoimmune disease. As I'm sure you know the right side heart pumps blood into the lungs. Well due to the lung problems it makes it difficult to pump blood into it. I do have chast pains from time to time but I don't think it's from that. I have nitrospray I carry in my purse but have never had to use it. It's just a precaution.
As for the invetro. Wow that's a tough one. I wouldn't even want to begin to answer that. I just thought about your two precious little ones that you already have who need their mom very much. That's all I will say on that subject though.
take care I hope you get some answers here that will be of help
hugs
carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
I will never leave you nor forsake you!
 
 
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/9/2008 8:01 PM (GMT -7)   
Find a cardiologist. That is the best advice I can offer and I think it is the best thing you can do for yourself, your little ones, and your husband.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/9/2008 8:41 PM (GMT -7)   
Who ordered your echocardiogram? Do you have a cardiologist?  They are the ones who should be explaining all this to you.  How can they expect you to know what is going on!!! I can understand your frustration here.  That is information that needs specialist explainations!
 
I do have mild mitral valve regugitation.  My condition is called Libman Sach's Endocarditis, or inflammation of the mitral valve.  Lupus caused.  So I get an echo done every year to make sure the regurgitation isn't getting worse.  The only thing to treat this is prednisone, as far as I know.
 
The other things you mentioned, I have no idea about.  A cardiologist really needs to be added to your list of doctors if you don't have one.
 
The pregnancy thing is a tough one.  I can't have children due to my lupus, blood clotting disorder, etc.  It's just too risky.  I've been told that if I ever did get pregnant, I probably would miscarry because of the blood clotting disorder (APS).  My gyno said I would have to be in remission, true remission, for at least one year before trying to conceive.  Just keep this in mind too.... We have enough trouble looking after ourselves most days.  If you have a child, looking after yourself becomes priority #2.  The child comes first.  Can your body handle that?  Can you manage massive flare ups plus look after a child?  I sure can't.  Just my own opinion.  I wish I could be mom. But it isn't my reality.  I'll be a great aunty to my nephew instead.  Lots to think about.
 
Let us know what happens with your echo okay! 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 3/9/2008 8:43 PM (GMT -7)   
Amy, I am not trying to scare you, but, I have seen the sadness caused by the death of my friend's daughter who decided to try a pregnancy against doctor orders. She had similar health issues as you describe and her cardiologist was against it. Her young husband and young son are alone now and my friend, her mother, is coping as well as can be expected. She was a beautiful, young mother and she made such a great contribution to this world with her giving and caring heart!

Redrose (I think it was her) had a great suggestion about a surrogate. Do you have a family member who would be willing to help you in this way? (You sound like such a lovely person yourself that I would offer to do it for you had I not already had a complete hysterectomy!)

My thoughts and prayers are with you dear!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/9/2008 11:19 PM (GMT -7)   
Carefully screened experienced surogate mothers can be found, it just takes work. Forget adoption- chronic health issues equal denial via all avenues, my aunt works with protective services/foster care and said even they don't allow chronic illness patients to adopt or even be foster parents in most cases.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 3/10/2008 3:46 PM (GMT -7)   
Amy,
 
Pulmonary hypertension is defined as >25.
 
Here is an explanation.
 

IPAH is a serious syndrome, with significant morbidity and mortality. It can be associated with progressive elevation of pulmonary artery pressure and can lead to right ventricular failure. By definition, the cause is unexplained and implies that associated causes of pulmonary hypertension have been ruled out. The definition, therefore, is the same as IPAH in adults: a mean pulmonary artery pressure greater than 25 mm Hg at rest with normal pulmonary capillary wedge pressure and the absence of associated causes of pulmonary hypertension. Some authors believe that including exercise hemodynamic abnormalities in the definition of IPAH is important, especially in the pediatric population; therefore, a mean pulmonary artery pressure of greater than 30 mm Hg with exercise is also considered to be an abnormal response and is consistent with the definition of IPAH.

It was suspected that I had the problem and 2 different tests indicated I did.  A right heart catherization showed that I did not have it and that my lung problems were being caused by weakness of my diaphragm muscles. 

If you have not seen a cardiologist then find a good one and get an appointment.  I don't know enough to comment on the specifics of your results but you need to see a specialist.  Your edema problems could be heart related but they are also common with lupus and kidney problems.  I had a condition called proteinuria and it caused severe edema but once treated I have not had any problems at all. 

Don't try to interpret your results...see a cardiologist and even a nephrologist to determine what is causing your problems.

Bill


Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/11/2008 7:07 AM (GMT -7)   
(((((Amy)))) I've missed you here and have been wondering how you've been doing. I'm so sorry to hear about your heart issues. I don't have any experience with these problems but it looks like ginny and Bill gave you some great info. I agree with seeing a cardio doc ASAP so he/she can explain things to you. It's ultimately your decision, but please don't put your life at risk. Like Audrey said, it would be a tragedy to leave the family you already have.

It really really stinks that all of these problems are getting in the way of you and your husband having another child. I really wanted one more, but came to the realization that it would be too hard on my body, not only to have a baby, but I was worried about how I would be able to function while c and I don't have the really serious stuff going on that you do. Like the others said, there are some other options, but none of these options are simple. There is just so much grief and loss that goes along with having this disease.

Please let us know what you find out from a cardiologist. I'm worried about you - you need to find out what is going on with your heart. You are in my thoughts.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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westiemom
New Member


Date Joined Mar 2008
Total Posts : 1
   Posted 3/13/2008 3:58 AM (GMT -7)   
Amy,

You need to see a doctor who specializes in pulmonary hypertension. www.phassociation.org has a "find a doctor" link. The drugs that are prescribed to treat PH are usually only available through a specialist.

There is also a message board on the site where you can ask questions and get support. They are a great group of PHriends.

I have pulmonary hypertension secondary to a connective tissue disease.

Sandy
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