The paperwork never ends The Archives
Loved Ones - September, 2003 Archive Index CHFpatients.com

Jon 9-12     I think I'm back
 
Lynne R 9-12     dad has a terrible cough
 
Jon's 9-12 reply to Lynne R's 9-12     possibilities
 
Pam 9-12     what about flash pulmonary edema?
 
Jeff 9-13     seek CHF doc in New Jersey
 
Kate's 9-15 reply to Lynne R's 9-12     side effects
 
Lora 9-15     my father-in-law died
 
Susan B's 9-15 reply to Pam's 9-12     our experience
 
Anita S' 9-16 reply to Lora's 9-15     condolences
 
Karen S 9-22     does anyone have any ideas?
 
Kate's 9-24 reply to Karen S' 9-22     ICD cost battles
 
Lora's 9-25 reply to Anita S' 9-16     thank you
 
Monica 9-25     really need some answers
 
Mike's 9-26 reply to Karen S' 9-22     insurance payments
 
Karen S' 9-26 reply to Kate's 9-24     thank you
 
Carol's 9-27 reply to Karen S' 9-26     ICD situations
 


Jon, September 12, 2003 - Hi everyone, Well, it's nice to be back or at least sort of back anyway. The short version is that my servers crashed and my web host had a heart attack all on the same day so I was locked out of my domain. Since he was in the hospital and I did not know it, there was no way for me to contact him to even know what was happening. To make it worse I could not transfer my domain to a new host because my old one had it locked. I am now on a new host and the site is sort of running.
     My search engine is still not running right. I am also having some forms problems and some e-mail problems still but am sweating bullets trying to get everything fully functional, aided by large doses of music at high volume - I really am a child of the 70s, I guess. <g> Please be patient. I apologize in advance if your message gets lost - I think a couple of hundred did, at least.
     I will have a chat room running within about 2 weeks unless something else unforeseen comes up. I will host the chats myself. Also, is anyone interested in a public FTP section where unedited articles and images and such would be available for anonymous download? Please let me know at jon@jonsplace.org.
     Again, I am sorry for being out of touch - it was one of those situations where there was nothing I could do. A thank you to Captain Jack for checking in with me by phone! Jon.


Lynne R, September 12, 2003 - Hi, I don't know if I am posting correctly, but here goes. My father is 74 and had a recent heart attack. He now suffers with heart failure. He has a cough from what the doctors say is the drugs, and this really gets him and my mum down. My question is does anyone have any ideas on how to relieve the cough? He is very down at the moment trying to come to terms with his new way of life which as I am sure you all know is not easy. Thanks for any help. Take care, Lynne. lynbrolfe@aol.com


Jon's September 12 reply to Lynne R's September 12, 2003 - Hi Lynne, He might try switching from an ACE inhibitor to an ARB - see chfpatients.com/ace.htm#losartancough. Also see chfpatients.com/faq/pillows.htm for tips on keeping fluids draining out of the lungs at night. Sometimes, this cough results from fluid retention so more aggressive diuretic use (more Lasix) or a lower sodium diet will help. Jon.


Pam, September 12, 2003 - Hi, My mom was recently diagnosed with CHF. The cardiologist has said her ejection fraction is lower than normal; at one point he said 30 to 35%, now cardiac cath says 40 to 45%. Her left ventricular wall is thickened due to hypertension and she has diabetes. She has been rushed to the ER 3 times in 6 weeks, twice by ambulance. The most recent episode included the ER doc calling this "flash pulmonary edema" because she went from a little short of breath to not being able to breathe within one hour.
     The cardiologist says we need to treat this more aggressively with meds. She is already on an ACE inhibitor, beta-blocker, and Lasix. My questions are: 1) If it came on this suddenly, how can we prevent it from happening again? 2) Could the fact that she has not been following a low-sodium diet and ate two pickles that night have triggered flash pulmonary edema?
     Thank you, Pam. pjfitz@earthlink.net


Jeff, September 13, 2003 - Hi, Does anyone have any suggestions on CHF specialists in northern New Jersey (Morristown area)? jeff.cassidy2@verizon.net


Kate's September 15 reply to Lynne R's September 12, 2003 - Hi Lynne, I am sorry to hear your dad is coughing. It can drive you crazy, both doing it and hearing it all day and night. I had that problem just a few months back. I switched from monopril to enalapril to save some much needed money. Unfortunately, sometimes you just have to go with the more expensive meds. The enalapril started me coughing, and I coughed day and night. As soon as I switched back to monopril, my coughing stopped.
     Your dad's doctors need to try a little harder to help him with his problem. There are lots of drugs and lots of combinations. Sometimes it is hunt and peck to get it right. Don't let them just ignore his suffering. Kate. tothymecottage@frontiernet.net


Lora, September 15, 2003 - Hi, An update from my last post on August 19th: My father-in-law went home to be with our Father in heaven yesterday. After my post we took him to a GI specialist, where they took a ton of tests and decided that they did indeed need to take out his gallbladder. He made it through the surgery, but could keep his blood pressure up or his sugar down. They released him 8 days after the surgery. He was doing rather well and then he got really weak and started to retain fluid again so we put him back in the hospital, where it took several days to get the fluid off.
     They were then going to let him go home but he another spell of throwing up, the same as he was doing before the gallbladder surgery, but this time he had a partial stroke and heart attack, which damaged his heart and left some brain damage. His ears and mouth started turning blue and he went home to the Lord a few hours later.
     He had been in so much pain the last few hours that it was heartbreaking to see, but with the grace of God he had a wonderful nurse who was there with us in ICU and was telling us that God has chosen a time for us to go home to Him and until the family lets the person know that it is okay to go they will keep hanging on, trying to stay there with us even though they know that it is their time. We had just finished talking about this and Dad started letting out beautiful sighs, like a sigh of joy or relief. We all were standing there and I knew deep in my heart he was seeing the light of God. About that time all his vital signs stopped.
     It was so sad, but at the same time it was so wonderful because although he couldn't talk to us at that time he was letting us know the only he could that it was alright, and that he was at peace. Anyway, thanks to all of you and your posts - you've really been a blessing, God bless. lhyatt@catc.net


Susan B's September 15 reply to Pam's September 12, 2003 - Hello Pam, Welcome to the boards. Part of CHF is that it often comes on suddenly for many people. So, I think that being ill suddenly is just part of the condition. My husband has DCM. He can look pretty good one minute and the next be very ill. If he gets just a little sick, he can be very sick in no time. As his heart is weakened, a little extra stress takes its toll very quickly. My husband pays a big price if he doesn't follow the low-sodium diet.
     Is your mother weighing herself every day? There is a weight chart on the links under heartfailure.com. My husband is very good about weighing but he doesn't do anything about quick weight gain unless I read his chart, but he weighs and we can increase his Lasix to get the water off him. He has gained as much as 4 pounds in one day. The extra weight is very hard on his heart.
     It is likely that your mom can reduce visits to the ER by following the plan. My husband is only going to the ER about once every 3 to 4 months. Exercising, following the low-sodium diet, taking all the meds, and weighing every day is helping to reduce the effects of CHF for my husband.
     As for the pickles, you will never know for sure but look at the label. How much sodium is in them? My hands swell from 1 or 2 pickles and I don't have CHF. It sounds like the cardiologist is on top of things. You have to think of CHF just like diabetes - you have to take it day by day. Overdoing it on one day can carry over for several days. Good luck, Susan B. gbratcher@kc.rr.com


Anita S' September 16 reply to Lora's September 15, 2003 - Hi Lora, I'm so sorry to hear of the death of your father-in-law. It's wonderful that you were able to be with him when he died. I'm sure that made things easier for him. Now all his pain is over. My thoughts and prayers are with you. dreamersila@netscape.net


Karen S, September 22, 2003 - Hi, I know this is a long shot but since I'm about at the end of my rope, I thought maybe someone out there might be able to help me. My husband had an ICD implanted on 04/07/2003. At the time, he was insured through his former employer (local government) as he was a deputy sheriff. They are self-insured.
     "The Plan" says they will pay 20% above invoice price of the ICD. The hospital paid $21,000 for the ICD. The hospital is charging me $42,000 for the ICD - yes, the device alone, not the whole bill. They were charging me $52,000 but after an internal audit they decreased the bill by $10,050.00. This means that despite having insurance I owe the hospital $16,000. It seems wrong to me that the hospital can mark up the device that much. Does anyone have any suggestions? Thanks, Karen S. gstilley@hotmail.com
 
Jon's note: You can try negotiating with the hospital Patients Account Director or a hospital administrator.


Kate's September 24 reply to Karen S' September 22, 2003 - Dear Karen, I wish I had a good answer. I am fighting a battle of ICD costs right now. My insurance company was invoiced $72,000 for my ICD implant in April. My ICD unit failed after 4 months. I was promised that the replacement was being supplied at no charge, but I just received a copy of the bill to my insurance company showing a $60,000 charge. With what little sense of humor my husband I have left, we joked that this must be the bulk rate. I have been told that these implants have become a major source of revenue for hospitals.
     I would certainly exhaust all the normal routes first, but if all else fails I'd call an attorney. Sometimes just one letter from an attorney can move mountains that we can't budge. I'd also consider taking your case to your local TV station or newspaper for an investigative report. They, too, have been known to bring about settlements. If there is anything hospitals don't like, it is bad publicity.
     Whatever you do, keep fighting. Good luck, Kate. tothymecottage@frontiernet.net


Lora's September 25 reply to Anita S' September 16, 2003 - Thank you, God bless. lhyatt@catc.net


Monica, September 25, 2003 - Hi, My 84 year old mom had CHF diagnosed about 4 years ago. The last few years have been so trouble-free that her cardiologist hasn't seen her in a year (his choice). A few days ago she had an episode upon waking and we thought this was it - shortness of breath, lightheadedness, extreme weakness, couldn't get out of bed by herself.
     We called the doc and he increased her Lasix to 100mg a day and she sees him tomorrow. On top of that she broke her foot a month ago so her activity level is almost none. She just walks to the bathroom. My mom thinks she had a heart attack when this episode happened. Is that possible?
     Also, even though she is taking 100mg of Lasix (she used to take 80mg), it hasn't increased her times of going to the bathroom. When she does go, she says it's not much that she is actually urinating. I need some straight answers. Is her time getting close? She does not want any unusual efforts to resuscitate and would like to stay at home. We are worried about doing CPR on her because she has severe osteoporosis - could we cause more damage? We also need to know if we abide by her wishes, how she would die. I've heard awful stories that some people choke to death and I know I couldn't handle watching that. At what point do we call an ambulance? I thank the man upstairs for this site. I can ask as many dumb questions as I need to ask! jfraser2@ix.netcom.com


Mike's September 26 reply to Karen S' September 22, 2003 - Hi Karen, I'm in Alabama and deal almost exclusively with self-insured plans. I'm not an attorney but an insurance agent. When you say "The Plan" will only pay 20% above invoice price, what do you mean? Has someone from the underlying insurance company told you this or is the charge specifically limited in the plan?
     My point is this that all self insured plan have what is called the "plan document", which details what the plan covers, at what percentage, and at what limits. The plan document is what any court would look to in determining what should be paid. Get a copy of the plan document from the administrator that is paying claims for this group and review it word for word.
     In addition, if this self-insured plan is linked to an HMO or PPO and you have to use certain doctors and hospitals, then the hospital can only charge the negoitated price allowed within the PPO or HMO. I don't know if this helps. Feel free to e-mail me if you need further info. mebginc@bellsouth.net


Karen S' September 26 reply to Kate's September 24, 2003 - Dear Kate, Thanks for your reply to my earlier post. I actually work for a law firm and one of our attorneys is a Senator. I have talked to several of the attorneys in our firm about this problem. The only solution they have given me is to file bankruptcy. I talked to one lawyer outside our firm who never got back to me. I am a member of a paralegal listserv and I posted my problem there. I received one response and was told to go to the Director of Cardiology at the hospital. I have drafted a letter to him and will try that first. I'm waiting to send it until next week because my husband has an appointment to have his ICD checked and I'm going to ask the clinician and Medtronic representative what their thoughts are.
     If that doesn't work, there is a local tv station who has a program called "9 on Your Side" who gets involved in these types of things. After hearing your story however, I'm thankful we weren't charged $60,000 or $72,000! I told my husband jokingly that we might just have to go get it removed. Thanks, Karen. gstilley@hotmail.com


Carol's September 27 reply to Karen S' September 26, 2003 - Hi, My husband is recovering after a heart transplant, and is doing great. He had an ICD implanted 3 years ago before transplant. The hospital sent us a $60,000 bill in the mail and I just layed it aside and it finally just went away. I believe the hospital wrote off half of it and insurance paid the other half. They disconnected it during the transplant surgery and just left it in him. I told him we are going to sell it on EBAY! You just have to laugh! jcloyd@mikrotec.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

Talk to Jon Site Index