Mass General Has Nailed Down My Medical Problems...For Sure And FINALLY!!!

[Harrybaby666]

As it turns out, my Pulmonary Hypertension is the main culprit....what has been happening is that if I do NOT exhert myself, such as walking, lifting or climbing stairs my pulmonary artery pressures stay stable....if I DO exhert myself by doing any of these things, my pulmonary arteries shoot right through the roof. They are going to want to do a different type of right heart catheterization where they go in from the neck and then if my PA pressures remain stable, then they will put me on a bicycle to see how bad the PA pressure does go up to determine the type of medicine that I will need to be on.. Also....another miraculous thing happened....thankfully, I remembered to mention my A Fib and I may have to go in for an Abilation for that.....anyway, I mentioned to them that I was put on NITRO pills again, and Dr. Calfon instructed me to take one just before I have to do anything exhertional...so I took one just before I left Mass General to walk back to the subway....and WHAT A DIFFERENCE!!! I didn't get anywhere near as SOB and worn out as I have the past several trips to the hospital...in fact, outside of my usual stenosis, arthritis and neuropathy pain, I felt pretty darn good.....

Harrybaby should have gone to MGH a loooonnnngggg time ago.......However, Harrybaby is so very thrilled that things are getting taken care of by people who actually give a darn....

 

[nngbwh]

Great to hear you finally find a solution to your problem.

 

[ALCapshaw2]

Glad to hear that you are FINALLY getting appropriate medical care Harry.

 

[Superbob]

Well, it's taken a long trip -- literally and figuratively -- but sounds like you're finally getting the answers and medical care you need, Harry. That's great!

 

[Ross]

Harry just don't fall down while on Nitro or you'll go BOOM! Then the department of homeland security will label you as a walking, known terrorist and put you on the men in blacks hot sheet!

 

[Harrybaby666]

Harry just don't fall down while on Nitro or you'll go BOOM! Then the department of homeland security will label you as a walking, known terrorist and put you on the men in blacks hot sheet!

That would NOT surprise me any Ross....LOL...with the way society is today.....that would NOT surprise me...LOL

 

[Ross]

Well...............That's the kind of luck I have and you seem to have that same batch of luck.

 

[Nancy]

I had a feeling the PH would be at the root of your problems, you had all the symptoms. And, now you know why I always stress that if PH is anywhere in your medical records, you have to see a specialist. Your old doctors didn't have clue one about PH, what it is, how it reacts, and what to do about it. They didn't even know how to test for it. And that is true for the vast majority of doctors, pulmonologists and cardiologists too.

PH specialists are VERY important for all of you that have seen these in your medical records, Pulmonary Hypertension, Pulmonary Arterial Hypertension, PH.

Mass. Gen. is doing everything that was done for Joe to diagnose his PH, so I know you are on the right track.

Joe was on a hefty dose of Isosorbide which is another nitrate similar to nitroglycerin, along with his Tracleer, and some other things.

I am confident that they will get you feeling much better. So glad you pursued this route, they saved your life.

 

[Harrybaby666]

Well...............That's the kind of luck I have and you seem to have that same batch of luck.

Absolutely!!! I do however, believe that some of that bad luck is due to the fact that I am on Medicare and Medicaid...I have noticed a BIG BIG difference in the way people who have private insurance are treated as opposed to those, like myself are treated while on Medicare and Medicaid....it is almost like the government is blaming us for getting sick.....

 

[EireCara]

Harry, I was so happy to read your post. Not happy that you have PH of course, but at last you have gotten answers and help with your medical problems. I completely understand your frustration with the health system. Its exactly like that here as well. I also agree with Nancy.......this has saved your life. x

 

[Ross]

Absolutely!!! I do however, believe that some of that bad luck is due to the fact that I am on Medicare and Medicaid...I have noticed a BIG BIG difference in the way people who have private insurance are treated as opposed to those, like myself are treated while on Medicare and Medicaid....it is almost like the government is blaming us for getting sick.....

I've noticed that also. For the most part, I don't have any problems around here, at least not yet. I expect that will change very soon.

 

[Wise]

Glad you're getting some answers and real help now Harry. All the best to you.

 

[Freddie]

I echo what Wise has said. But I add many warm Canadian ((((hugs))))

I too wish you the very best.

 

[Harrybaby666]

I've noticed that also. For the most part, I don't have any problems around here, at least not yet. I expect that will change very soon.

Its already changing here Ross....I just found out that I cannot have a lap band put on at Portsmouth Regional Hospital in my hometown of Portsmouth because they will NOT accept Medicare or Medicaid any longer........Sadly to say bud, me thinkst this is only going to get worse.....

 

[barbwil]

Harry, You live in such a beautiful state; I used to spend summers at a camp in Rumney, NH as a counsellor and just loved it there!

I'm happy for you that you are getting good care at Mass General. My question to you is, why would you even consider getting lap band surgery at the Portsmouth hospital where you received such poor care? I googled "lap band medicare" and it seems to be a real issue getting approved for that surgery wherever you choose to go. If all goes well it costs about $25,000 and if it doesn't go well will go up to $50,000 at least. Is this surgery even a good way to go with your diagnosis of PH?

Wishing you all the best, Harry!!!!!!!!!!!!!!!!!

 

[Ross]

Its already changing here Ross....I just found out that I cannot have a lap band put on at Portsmouth Regional Hospital in my hometown of Portsmouth because they will NOT accept Medicare or Medicaid any longer........Sadly to say bud, me thinkst this is only going to get worse.....

There may still be hope Harry. I just read that congress reversed the decision to cut Medicare's doctor reimbursements and actually add to them instead. It's not signed into law yet, but we'll see what Bamster does.

http://money.cnn.com/2010/06/24/news/economy/doc_fix_vote/index.htm

 

[Nancy]

Harry, you may find that some of the weight you are carrying is fluid. Severe PH untreated, causes massive amounts of fluid, mainly in the form of ascites CHF (around the abdomen). Once that is under control, you may lose some of that weight.

 

[Harrybaby666]

Harry, you may find that some of the weight you are carrying is fluid. Severe PH untreated, causes massive amounts of fluid, mainly in the form of ascites CHF (around the abdomen). Once that is under control, you may lose some of that weight.

Lord I sure hope so Nancy, because I have never been 337 lbs before in my life, and with the arthritis and spinal stenosis, I am having a very hard time to move around....stiff, and I had to trade my car in for a mini van so I can sit higher and thus get in and out better.....

 

[Harrybaby666]

I have thought about that too Barb......

I have thought about that too Barb......

Harry, You live in such a beautiful state; I used to spend summers at a camp in Rumney, NH as a counsellor and just loved it there!

I'm happy for you that you are getting good care at Mass General. My question to you is, why would you even consider getting lap band surgery at the Portsmouth hospital where you received such poor care? I googled "lap band medicare" and it seems to be a real issue getting approved for that surgery wherever you choose to go. If all goes well it costs about $25,000 and if it doesn't go well will go up to $50,000 at least. Is this surgery even a good way to go with your diagnosis of PH?

Wishing you all the best, Harry!!!!!!!!!!!!!!!!!

And even though Dr. Calfon wants to do the lap band surgery, I am wondering if I should hold off until I find out how bad my PH actually is. Nancy said that people who have PH have excessive amounts of fluid in their bodies, and I am sure that this is what is happening to me. I think I am going to wait until I see what the cardiac right heart cath says and THEN make a decision.....they think I will need to go on PH meds such as Tracleer, and I am wondering if that is all that is needed to reduce my weight....

 

[Nancy]

Harry, Joe was on Tracleer, Isosorbide and a LOT of diuretics (Lasix, sometimes Aldactone and sometimes Zaroxolyn) plus a whole lot of other things. His stomach area still got blown up with fluid from time to time (portal hypertention), his legs also. But for the most part it was OK. But because the large amounts of diuretics that were necessary, his kidneys sometimes "talked back". That was the main reason Joe had to stay on a very restricted sodium diet, so he didn't cause too many problems to his kidneys with more diuretics than absolutely necessary.

You have probably seen this site, but it's a good one with an easy explanation of what happens with PH and how it affects the body, and other important information.

http://www.chfpatients.com/ph.htm

And if you haven't joined the PHA website, now is a good time.

http://www.phassociation.net/PHABoards/