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Old 10-24-2003, 02:44 PM   #1
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spirlhelix HB User
Post Pam's Response to Valger

"By the way, I just got done reading the post from 'Pam', and I am so sorry to hear of what you are going through. You sound young, and of course, it's so distressing to think of this happening to someone who is very young. Have you had heart problems your whole life? Does it run in your family? You know, I don't know where you are going for treatment, but when my Dad was ill, he went to Stanford, and they were really great. Heart transplants there have become almost a routine thing. Don't give up hope on this, you have a 50% chance, which is more than some people have, hold onto that. And, also, the heart transplant could give you a whole new life. Are you on a list yet? My sister-in-laws friend needed a new liver, but she had to kind of fight to get on the transplant list, and she did, and she did receive a new liver, and did great. Make sure your doctor is doing the necessary things to get you on a list. Sometimes when you participate in clinical trials (I think that's what her friend did) that also helps with getting on a list. Good luck to you, and God Bless You! Val"

Hi, Val!

I'm on the youngish side, I guess! I'm forty seven.
Been fighting a couple of fatal liver, kidney, and systemic conditions, which I seemed to recover from two years ago. But my blood pressure, which was always high, became even higher. It's still out of control to this day. I either don't respond to medications, or else they overpower me with intolerable side effects. For instance, just this week they tried me on hydralazine, which as far as I can tell gave me hepatitis. I'm on the mend now that I have discontinued it.

I'm probably a candidate for ablation, although I haven't gotten the doctors lined up with that notion yet. So far, the specialists I'm dealing with are interested mostly in medications. I will make my way there soon, though. My next hurdle is a cardiac cath. If they find a blockage, they are optimistic they can patch me up with less call for meds. If the heart rate is still fast after that, I will request a workup by an electrophysiologist and an ablation.

My BP at the doctor today was 197/121 with a heart rate of 119. I'm on 320 Diovan, 50 Aldactone, 25 Imdur, 400 magnesium/calcium, 2 methylcobalamin daily.
Despite juggling of meds, my BP has not budged.

The first I heard of transplantation was just this Monday, so no, I'm not on a list yet. But I do think we have a few more tricks up our sleeves before I have to sign up for that one. I pity the study of trial medication with me as a candidate! I'd throw the whole thing off. . .suddenly, one in a hundred patients gets hepatitis, becomes suicidal, gets a whole body rash, any of the strange reactions I get to medications which it seems very few other people usually experience. . .they'd probably just have to throw out my results anyhow!

Thanks for sharing your experiences and encouragement! I'm glad your father got such good medical care.

Hugs,

Pam



 
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Old 10-24-2003, 05:36 PM   #2
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ralve HB User
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Hi Pam, and thanks for the letter! I'm so sorry for all you're going through, but I know there is help out there! There are so many amazing things going on all the time, when my Dad was ill, there were alot of different doctors saying that his illness could be treated. He had something very rare, we think it was something called amyloidosis, most people have never heard of it, but it can cause multiple organ failure. But, they are treating this at Mayo Clinic, for one. I wish he had gotten there, but we really didn't know how serious it was until it was too late. We still don't know if he just felt pretty good until the last six months, or was putting up a good show. He was very healthy all of his life, though. He died at 69, which was much too young for us.

You are young, which is good, because you could be a definite candidate for a transplant. I thought I had HepC a while back, the test came out positive, and my doc said that when you're young, transplants are really not that hard, they give them to the younger people first. As it turned out, the HepC test seemed to be wrong, because all my subsequent tests were negative.

Also, I know they ae coming out with new meds all the time, hopefully some that will not have as bad as effect on you. Just don't give up hope, even though I know that it might seem bad sometimes, because I know so many people that their situation seemed so bad, and now they're doing great. Like the girl I told you about with the liver transplant, it seemed so bad for awhile, and then she got her new liver, and did great. Do you feel good about your doctors? I know there are really wonderful clinics all over the country, Mayo is one, and where my Dad went, Stanford is wonderful. I forget the doc's name there, but I'll have to look it up and give it to you, he is like world renowned. And, even though he is so busy, he would take the time to call me back, and discuss my Dad with me, I am so appreciative of that. It was such a hard time for all of us.

How many kids do you have? I have three, a boy who's almost 19 (on October 27th) a girl who's 16, and a girl who's 9. Right now we live in Texas, but it's been so complicated, we moved out to Reno to be with my Mom after my Dad died, but had to come back here to get the house together. My husband got a job in Connecticut, so he's there right now. We still really don't know where we're going to end up, I like it here, but there's nobody here anymore! My whole family is out West, and then my husband is in Connecticut. He seems to like it there, but I guess he's worried about how expensive it is, and the winters.

Anyway, I hope you're feeling good, there is so much info out there to find out! The internet is so helpful, we found out alot about my Dad here, I almost had him in a trial at Mayo. Thanks for writing back, talk to you soon! Val

 
Old 10-25-2003, 11:29 AM   #3
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Location: Tucson AZ USA
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KTUC HB User
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Dear Spiralhelix

I could relate to your statement that “I either don't respond to medications, or else they overpower me with intolerable side effects.”

Although I do not appear to be a sick as you now, I had serious chf a year ago. It is much better now. It took a couple of months to get all the tests done and a blockage fixed w a bypass, then the meds made me faint. I ended up getting a pacemaker so I could take the meds! I for one would like to hear from folks on an ongoing basis – on how they are doing and what helps them get through.

You seem like a very positive person. With a lot to share. .

 
Old 10-26-2003, 05:42 AM   #4
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spirlhelix HB User
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Hi, Val

I'm sorry to hear about your loss. It sounds like your father had a truly loving family around him.

I have three really wonderful kids, a daughter, age 22, and two sons, ages 19 and 15. They are great to me, and I only hope not to let them down. I keep letting them know I'm planning to be with them as long as I can. I'm divorced. My parents are older (79 and 88), and although they are managing well, I am concerned about their needs, too. I wish I could be more help to them. Instead, I may need to ask for more help myself as I file for disability and wait for that tedious process to complete; meanwhile, I have no other sources of income. That makes me sad. It seems ironic that although I don't feel awful right now, doctors have declared I am unable to work.
When I was sick before, I felt truly terrible. I could hardly drag myself around, let alone stay alert enough even a few hours a day to work, and SSD turned me down.

KTUC, I'm glad to hear you've had so much improvement since your bypass! That is very encouraging. I wonder if they will find a blockage. I suppose with my kidney condition, which caused my cholesterol to be very high at one point (570, as I recall), there is a good chance I have some sort of blockage that can be improved upon surgically.

Thanks for your concern and interest!

Hugs,

Pam





 
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