weat4 Posted August 19, 2012 Share Posted August 19, 2012 So, I think I'm looking for some ideas, motivation, consensus, something...... My DH has a "special" medical history. He's 44 and otherwise active, hard-working, and in okay shape (he could stand more exercise, when he's not almost-dying, that is, but he's always been slender.) 1997 rare form of iris melanoma, loses L eye (thankfully, caught early enough, no radiation/chemo. necessary) 2005 kidney infarct ~ loss of 2/3 L kidney ~ unknown cause, completely stumps the myriad of specialists he sees 2006 heart ablation for SVT (rapid/weird heart beat) March 2012 ~ heart attack! Again, very atypical ~ many different opinions from several different cardiologists ~ most likely caused by a blood clot, but of unknown origin. No hardening of arteries, blockages, etc. ~ absolutely nothing typical of a "normal" heart attack candidate. He was hospitalized 4 times in 3 months with related (they think, but still unexplained) issues, including 2 outpatient procedures. He also has an implantable heart monitor ~ one cardiologist thinks it could be an electrical impulse issue. It's not a pace maker or anything corrective, just a long-term diagnostic tool. It has been a looonnnggg few months. He's on all the major cardiac drugs and Coumadin (serious blood thinner.) He functions fairly close to normal more than 60% of the time, but he's still having pain, weird feeling heart "events", he's lost about 15 pounds and is having trouble gaining it back, upper L quadrant "stomach" pain, fatigue, and generally not being 100% himself (much more tired, irritable, crabby.) I feel like we need to continue to pursue what caused the heart attack in the first place (and we've done some of this,) but he is done. Doctors never have answers for him and at a point start to dismiss/discount his continued vague symptoms. I don't know whether to just go along and cross my fingers that nothing else happens or to push him harder to do what it takes to figure this out ~ and we've had more than one doctor tell us we may never know. I'm having a hard time being "settled" with moving on, even though I very much want our "normal" (whatever that is, right?!) life back. If you've read all this, thank you so much. Maybe it helps simply to type it out and not feel alone tonight. Julie dd, 13 bgb, triplets, 8 Quote Link to comment Share on other sites More sharing options...
happi duck Posted August 19, 2012 Share Posted August 19, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
OnTheBrink Posted August 19, 2012 Share Posted August 19, 2012 I'm sorry. If it were me, I'd want to know what the problems are and then fix them. I'd hate not knowing why he's feeling poorly and having heart issues. Have you considered Mayo Clinic? Johns Hopkins? Any place else that may have better doctors and/or methods of diagnosing his symptoms? Quote Link to comment Share on other sites More sharing options...
Catwoman Posted August 19, 2012 Share Posted August 19, 2012 (edited) I don't have any advice for you, Julie, but I wanted to send you some :grouphug::grouphug::grouphug: and prayers. Your husband is incredibly lucky to have you as his wife, because you have stood by him and supported him through his many health crises, and not every wife would be so dedicated and loving. BTW, I would like to second the suggestion of the Mayo Clinic. We have a friend who had multiple health problems several years ago, and she went to the Mayo Clinic for help. The doctors there took a whole-body type of approach, and tested her for pretty much anything and everything. After a week of tests, they had pinpointed her problems and she is still doing well today. (In fact, she just turned 100 years old -- and she still flies out to the Mayo Clinic once a year "for a tune-up" as she calls it!) Edited August 19, 2012 by Catwoman Quote Link to comment Share on other sites More sharing options...
celticmom Posted August 19, 2012 Share Posted August 19, 2012 Was he on medication before the heart attack? Could some of the symptoms be side effects of the medications? I would research that first if that has not been looked into. Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted August 19, 2012 Share Posted August 19, 2012 :grouphug: Not having answers is so very hard. No advice, but I did not want to read and not post. Quote Link to comment Share on other sites More sharing options...
Incognito Posted August 19, 2012 Share Posted August 19, 2012 I will third the idea of the Mayo Clinic. I have known a couple of people who have gone there with no hope (and got hope) and one close to death who other doctors had given up on and Mayo figured him out and he's still alive now and almost 90. IIRC you can even start with having them go over all your files and not go in yourself (saves money). The people I knew were in MN, so they just went in. Quote Link to comment Share on other sites More sharing options...
Reflections Posted August 19, 2012 Share Posted August 19, 2012 I think that the Cleveland Clinic in Ohio is one of the best heart hospitals. http://my.clevelandclinic.org/default.aspx Also, IMO, it sounds like he keeps throwing clots - the renal infarct and the heart attack. I would pursue the "why". Google renal infarct and thromboembolic tendency - and see if that helps you with your doctors. I had a bad run with doctors once - and my best advice is keep plugging, keep trying different doctors until one doctor's eyes light up and they figure this out. Best of luck. This is so hard and I am truly sorry you both are going through this. Oh, and, your husband is probably depressed because he is sick all the time, can't do the things he wants to do, can't keep up, doctors are giving him the run around, etc. which is why he is "done". I was there too once. :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Sparkle Posted August 19, 2012 Share Posted August 19, 2012 I have no advice, but I think it's good you're posting because maybe someone will have experience with this. I'm sorry your dh has had to go through so much. I'd keep seeking answers. :grouphug: Quote Link to comment Share on other sites More sharing options...
Tammi K Posted August 19, 2012 Share Posted August 19, 2012 Also, IMO, it sounds like he keeps throwing clots - the renal infarct and the heart attack. I would pursue the "why". :grouphug::grouphug: :iagree: Have they looked at autoimmune issues such as antiphospholipid syndrome or similar? Quote Link to comment Share on other sites More sharing options...
Laura Corin Posted August 19, 2012 Share Posted August 19, 2012 Polycythemia? Hard to diagnose, easy to treat. My father had it. It can cause blood clots. I'm not a doctor.... Laura Quote Link to comment Share on other sites More sharing options...
melissad2 Posted August 19, 2012 Share Posted August 19, 2012 :iagree: Have they looked at autoimmune issues such as antiphospholipid syndrome or similar? :iagree: Quote Link to comment Share on other sites More sharing options...
Renee in NC Posted August 19, 2012 Share Posted August 19, 2012 Was he on medication before the heart attack? Could some of the symptoms be side effects of the medications? I would research that first if that has not been looked into. The fatigue is a side effect of the Coumadin. My Dad was on it for a long time (for blood clots) and switched to daily injections (Louvanox?) He couldn't handle the fatigue - it was really limiting his life. Quote Link to comment Share on other sites More sharing options...
Lanny Posted August 19, 2012 Share Posted August 19, 2012 >(much more tired, irritable, crabby.) I can understand why your DH feels that way! He is probably very tired and depressed about his medical problems by now. I do not know where you live, but, at the least, I would suggest that he go to a Teaching Hospital. If you were here, my main doctor is the Head of Cardiology in a very well respected hospital. Various responses prior to mine have mentioned the Mayo Clinic. If that is possible, I would also encourage that. They have branches in some places. I believe in Arizona and possibly in Florida too. The Cleveland Clinic was also mentioned. The Saudi King and other very wealthy people go there. It may be #1 with regard to Cardiac issues. Possibly they have branches in other states too. The cause of the symptoms, if possible, should be found, so they can be treated. Symptoms can be treated, but frequently there are many possible causes of a symptom. I'm not a doctor, but if I was a doctor, I believe Diagnosis would be the hardest thing and then trying to get the patient on the best medicine would be the next hardest thing. Much GL to you and to your DH! Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted August 19, 2012 Share Posted August 19, 2012 Since he has had a clot, did they do all the blood tests for clotting? When I had this done in 2010, they took 29 vials of blood and I had to be off of coumadin for a few days. Turns out that I have Factor V Leiden, a condition that is probably in about 5% of Americans, specifically more likely European Americans. But anyway, they needed that much blood because there are so many causes of blood clots. Quote Link to comment Share on other sites More sharing options...
torikei Posted August 19, 2012 Share Posted August 19, 2012 I have Factor V Leiden, also. My brother died from it. The medical community often misses blood clotting disorders. They are often missed or misdiagnosed. I would ask for the complete blood panel that will check for all clotting issues. A hematologist would be a good place to start. My thoughts and prayers are with you and your husband. Tori Quote Link to comment Share on other sites More sharing options...
NoPlaceLikeHome Posted August 19, 2012 Share Posted August 19, 2012 I'm sorry. If it were me, I'd want to know what the problems are and then fix them. I'd hate not knowing why he's feeling poorly and having heart issues. Have you considered Mayo Clinic? Johns Hopkins? Any place else that may have better doctors and/or methods of diagnosing his symptoms? :grouphug::iagree:If possible I would get him to a place like the above. It can be well worth the trip. Quote Link to comment Share on other sites More sharing options...
weat4 Posted August 20, 2012 Author Share Posted August 20, 2012 Thank you all for your very kind responses and taking the time to offer stories and suggestions. He has had the testing for blood clotting disorders (tons of blood taken) and so far, nothing. We do need to continue and Mayo and Cleveland Clinic are excellent suggestions. He is quite amazing and although I know he may suffer some days from depression, overall his attitude is inspiring ~ much better than mine would be. Again, thanks so much. Warmly, Julie Quote Link to comment Share on other sites More sharing options...
besroma Posted August 20, 2012 Share Posted August 20, 2012 :grouphug:I hope you get some answers. :grouphug: Quote Link to comment Share on other sites More sharing options...
blondeviolin Posted August 20, 2012 Share Posted August 20, 2012 My health issues are not heart related, severe, life-threatening, rare and EXHAUSTING. It can be so frustrating to see doctor after doctor who have no clue, throw up their hands, or even suggest that your issue is psychosomatic. It is SO disheartening to be "rare." BUT, it was so freeing to find doctors who had seen the rarity before, doctors who knew what to look for, doctors who understand and can treat. Even though he may say he's "done," keep searching! Just as rare as his issue/disorder is, there's a doctor out there for it. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted August 20, 2012 Share Posted August 20, 2012 (edited) I thinK you need those answers. Your kids may need those answers one day. FWIW, dd12 has been to 21 doctors in 8 years, not including several who saw her during a recent hospital stay due to severe dehydration from a virus. We do hope treating her Lymes Disease will clear up a lot of her symptoms but I still worry. I COMPLETELY understand the frustration, but I would definitely encourage your dh to keep trying to get to the bottom of his health issues. :grouphug: i am so sorry for you, and especially your dh! Edited August 20, 2012 by Denisemomof4 Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted August 21, 2012 Share Posted August 21, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
kalanamak Posted August 21, 2012 Share Posted August 21, 2012 Have they checked for septal defects? It is normal to have small clots come to the right side of the heart, and they are filtered out by the magnificent lungs. If one can travel from the right atrium to the left, bipassing the lung, these can lodge in the general circulation. An SVT and throwing clots would make me look at the atrial septum very, very closely. I'm not sure how "they" do it these days ... tracers or bubble tests, etc. Keeping up with cardiology is a full time job. But that is what I would consider. Usually, if someone has a clotting disorder, there are findable clots in the extremities. This is just my thought. Some things are so rare we don't have a test or assay for them, like autoimmune disorders. I suspect the melanoma is unrelated. It is possible to be hypercoagulable if one has a solid tumor, but the time between clot one and clot two would strongly argue against this: is should have declared itself by now, and again, cause a big clot, not a little one. :grouphug: Quote Link to comment Share on other sites More sharing options...
KidsHappen Posted August 22, 2012 Share Posted August 22, 2012 Oh my. I thought I had a rough summer but at least I had answers. Quote Link to comment Share on other sites More sharing options...
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