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

Susan B's 8-1 reply to Glenda's 7-31     coping with caregiving
 
Cora 8-1     my grandmother died
 
Ann 8-2     how can I help my neighbor?
 
Anita S' 8-2 reply to Cora's 8-1     condolences
 
Susan B's 8-4 reply to Cora's 8-1     condolences and more
 
Greta's 8-24 reply to Rosemarie's 7-27     gallbladder a possibility
 
Cora's 8-5 reply to Susan B's 8-4     thank you for the poem
 
Donna 8-5     need some help
 
Susan B's 8-5 reply to Donna's 8-5     drag him to the doctor!
 
Ellen 8-7     seek LVAD experiences
 
Shelia 8-7     seek similar experiences
 
Sheryl C's 8-8 reply to Shelia's 8-7     diabetes is a possibility
 
Greta's 8-8 reply to Ellen's 8-7     possible resources
 
Vonda 8-9     how can I comfort my mom?
 
Valerie R's 8-9 reply to Vonda's 8-9     some questions
 
Ellen's 8-10 reply to Greta's 8-8     seek LVAD experiences & more
 
Joy K's 8-12 reply to Vonda's 8-9     some suggestions
 
Susan B 8-12     some good news
 
Carol's 8-14 reply to Ellen's 8-8     LVAD experience
 
Steve 8-18     I hated a convalescent home
 
Lora 8-19     what does all this mean?
 
Jerald P's 8-19 reply to Steve's 8-18     living in convalescent center
 
Vonda's 8-21 reply to Lora's 8-19     eyes and heart failure
 
Mari Mueller 8-22     seek young CHFers and more
 
David McFarland 8-23     resource for chronically ill
 
Susan B 8-24     seek pacemaker experiences
 
Anne's 8-25 reply to Susan B's 8-24     pacemaker experience
 
Jon 8-26     heart forums down for awhile
 
Crystal S' 8-27 reply to Marie M's 8-22     coping and more
 
Katherine H's 8-27 reply to Susan B's 8-24     coping and more
 
Francine 8-27     it is hitting home today
 


Susan B's August 1 reply to Glenda's July 31, 2003 - Dear Glenda, Welcome to the boards. What a great question! I was so busy worrying about what CHF is, I did not ask what I needed to do for myself for months. My husband is 47 years old and he has been ill with CHF for almost 3 years now.
     One of the best things I do is read the posts and write when I have something to say. I feel free to complain here and I know that people understand. Most days my husband looks too good to be ill so people treat him as if he is well, which is good and bad.
     I also am a dreamer and planner so I still plan and dream with my husband. I am planning to take a Spanish class this fall at college because we hope to go to Argentina in January to see our exchange student and his family. January is summer there, so the weather will be very good. All our plans hinge on his good days and bad days, but much more is possible than I believed when he first became ill.
     I wish I could say that I am still exercising to help with the stress, but I was in a car accident last winter and I just now am starting to feel better.
     We let ourselves take breaks from life. I got in a big fight with my mother-in-law (whom I love dearly and is a very sweet person) at Christmas last year because we just could not make it to all the family events. My husband was not up to it and I put my foot down. This is a stand that helped me and him. I can just say no to things that I never could have before.
     I hired two attorneys at my office to help with the work load so that I could be with my husband when I need to be. I have taken more time off work in the last year than I have in the last 6 years before that. Knowing my limitations has been very helpful. I just say no. What a great gift! I hope this helps, Susan. gbracher@kc.rr.com


Cora, August 1, 2003 - Dear Jon and other readers, I had just found this web site and didn't post a whole lot, but I appreciate the opportunity that I had to read other posts to know what everyone was experiencing.
     My grandmother passed away July 25th at 1:24 AM. I had spent all afternoon at the nursing home, and left around 8: PM when my mother came back to sit with her. I got the call around midnight that it was time. I hurried up and got back to the nursing home. I had called the pastor on my way. When I got there, she was breathing so sparingly. Her respirations had fallen to about 12 per minute or less. I left the room to go see if the pastor had arrived. One of the elders arrived, then the pastor behind him.
     We went into my grandmother's room and the nurse was standing over her checking vitals or something. My pastor suggested we go to the Lord in prayer. My stepfather, the pastor, the elder, my fiance and myself joined hands and went to our Lord in prayer. We were standing about 3 to 4 feet away from her, not around her. I couldn't understand why the preacher didn't wait for the nurse to finish. Now I understand. While we were in prayer, my grandmother peacefully passed away.
     I felt bad that I wasn't at her immediate side, but the pastor assured me that I was in the best place that I could have been - in prayer. I didn't get to tell her that I loved her at that moment and I felt bad about that too. Now that she has passed, I feel like a big part of me has been ripped out of my chest. I have spent so much time taking care of her over these years, and this last month made daily trips to the nursing home. Now that major role in my life has been stripped away.
     I need to find a new routine, but it is so difficult. I walk into my house and it is like a floral shop (from the memorial service). I would so much rather have her than these plants and flowers. She was the woman who raised me and she was like a mother to me. I will miss her dearly.
     Again, I want to thank everyone for the opportunity to post my feelings and to have read other posts. May God bless each one of you and your loved ones in your own unique situations. Sincerly, Cora. cora@pic-plastics.com


Ann, August 2, 2003 - Hi, I look after my neighbor, who suffers from shortness of breath due to CHF. Is there anything she can do (or I can help her do) such as breathing exercises or techniques that will make her breathing easier. Any help will be greatly appreciated. Thank you. annfromca@webtv.net
 
Jon's note: low sodium diet and sleeping with head and neck elevated


Anita S' August 2 reply to Cora's August 1, 2003 - Dear Cora, I am so sorry to hear about the death of your grandmother. It is so hard to lose a loved one. I'm sure she was comforted by your presence and your prayers as she left this world to be with Jesus. One comfort you have is that her pain is over and her life is full of joy now. It is the loved ones left who somehow have to learn to live without them. You are in my thoughts and prayers. Take care, Anita. dreamersila@netscape.net


Susan B's August 4 reply to Cora's August 1, 2003 - Hello Cora, I am so sorry for your loss. Today was my grandmother's funeral. She was suffering from many things including heart failure. I wanted to share the following (I don't know who wrote it):

Don't grieve for me, for now I'm free.
I am following the path God laid for me.
I took His hand when I heard Him call.
I turned my back and left it all.
I would not stay another day.
To laugh, to love, to work or play.
Tasks left undone must stay that way.
I found that peace at the close of day.
If my parting has left a void,
Then fill it with remembered joy.
A friendship shared, a laugh, a kiss.
Ah, these things I too, will miss
Be not burdend with time of sorrow.
I wish form you the sunshine of tomorrow.
My life's been full, I've savored much
Good friends, good times a loved ones tough.
Perhaps my time seemed all too brief.
Don't lengthen it now with undue grief.
Lift up your heart and share with me.
God Wanted me now. He set me free.

I could not get all the way through it the first time. My family used it on the program for my grandmother's funeral. My husband and I have lost 6 family members in the last year. I have lost 3 to heart failure: My grandmother, grandfather, and uncle. Time is what it takes to recover. I lost my best friend at age 14 to heart failure. She was born with a hole in her heart and it was before doctors did the repair surgury on babies. I still think of her every day but now 30 years later, it doesn't hurt as much. You are in our prayers. As always, thanks Jon, for all you do. Susan B. gbracher@kc.rr.com


Greta's August 4 reply to Rosemarie's July 27, 2003 - Hi Rosemarie, This may sound a little crazy but you might have the doctor consider the possibility he is having gallbladder problems; I did. My CHF was diagnosed in March of this year. I had not been home from the hospital for more than 2 weeks when I was back in the ER with a kidney stone. That kept me in and out of the hospital for about 2 weeks.
     That had no sooner settled down than I began having problems with pain in my lower chest area, excessive burping and lots of gas. I also noticed that after eating an especially fatty meal I was in agony from the pain. A visit to the ER one Saturday evening and a radiology test a few days later confirmed that my gallbladder had gone on the blink! I was told my gallbladder's ejection fraction was 0%. So, you might consider asking the doctor to take a look at your husband's. It may not be the problem, but it is worth asking about. Good luck, Greta. gjohnson@arkansas.net


Cora's August 5 reply to Susan B's August 4, 2003 - Dear Susan, Thank you so much for that beautiful poem. It was hard to read, for it brought tears to my eyes, but I re-read it a couple of times. I also gave a copy to a coworker who recently lost her father-in-law. It was very moving. I am going to attend a grief recovery class. I am so grateful for this web site. I hope that God blesses each one of you and your loved ones. Cora. cora@pic-plastics.com


Donna, August 5, 2003 - Hi, I need some advice. I think my husband may have symptoms of heart failure. For awhile now, his hands and feet swell terribly to the point that his wedding band would cut his finger if he didn't get it off in time and his sock leaves a dent around his leg when he removes it. Lately, he complains of being exhausted and he has been feeling nauseated. He often looks pale to me, although I don't know if this is a sign. He is bad about not visiting the doctor. Should I make him go and how do I handle this without seeming like the overbearing panicky wife? I want the doctor to test him thoroughly. I'm worried. prizneruvluv@aol.com


Susan B's August 5 reply to Donna's August 5, 2003 - Hello Donna, Get your husband to a doctor now! If you are wrong, oh well, but if you are correct and you don't go, then what? My husband's doctor points out to my husband that married men live longer because their wives drag them to the doctor. I tell my husband that he is going to the ER or the doctor and I don't care what he thinks. Yes, I do have control issues but I also have a live husband. Good luck, and let us know how it turns out. Susan B. gbracher@kc.rr.com
 
Jon's note: A BNP blood test can decide the issue in 15 minutes


Ellen, August 8, 2003 - Hello everyone and thank you Jon, for this CHF site. I need some advice. My husband has had CHF since 1998 and his condition got to such that medication wasn't helping him anymore. He has been in and out of the hospital, and this last time since July 6th.
     He had surgery 2 weeks ago to have an LVAD implanted. Because he was so sick before surgery, he is going to have a long recovery. I would love to hear from anyone who has a husband with an LVAD. I work full-time and have used quite a bit of Family Leave already this year. I cannot quit my job.
     The coordinator for the LVAD department told me that when he comes home, someone will need to be with him all the time. We don't have a lot of extended family. We do have 2 sons living at home, but they both are in school. Does anyone have any suggestions? I sure would appreciate any support or suggestions. Thank you. ESmith2673@aol.com


Shelia, August 7, 2003 - Hi, I am caregiver for my 38 year old hubby, who has CHF resulting from respiratory failure and muscular dystrophy. He is life-support ventilator-dependent for 2-1/2 years now. My question is concerning swelling of feet and legs, and blisters that are on both his legs. I have been told this is from CHF. He cannot take diuretics because his electrolytes are adversely affected if he takes more than 40mg Lasix daily. Have any of you dealt with these swelling/blisters/diuretic problems with your CHF? How are you dealing with it? Thanks! musicldy@bellsouth.net


Sheryl C's August 8 reply to Shelia's August 7, 2003 - Hi Shelia, Spontaneous blistering can be a symptom of diabetes. Has your husband been tested for this? CHF and diabetes often go hand in hand. Keeping his legs elevated on pillows should help with the swelling. Use only tepid water to bathe his legs and be very careful when gently patting dry.
     Everyone's electrolytes can be affected by diuretics. Most of us are put on a potassium supplement when we go on Lasix. Is your husband seeing a cardiologist or a CHF specialist? Sheryl C. cvprehab@hotmail.com
 
Jon's note: Just remember that in mostly immobile people, raising the legs can increase fluid congestion in the lungs and abdomen. Ask his cardiologist about using Southey tubes for leg edema if all else fails.


Greta's August 8 reply to Ellen's August 7, 2003 - Hi Ellen, I don't know what size town you live in, but if it is small you may not have the resources to pull from. There are many agencies available to help you out in this situation, so my suggestion is to call your local hospital, check with your physician, or look in the yellow pages of your phone directory, and inquire about support groups or caregivers who might be able to supply you with someone willing to stay with your husband during the day. Do you also have a church family you can ask for help? I hope so. Blessings, Greta. gjohnson@arkansas.net
 
Jon's note: You don't have to attend a church to ask for their help - my Nazarene church routinely helps non-attending non-members upon request

Vonda, August 9, 2003 - Hi everyone, It has been awhile since I posted. My mother Mary is 58 years old and was diagnosed with CHF in May of last year. Her EF was 11% and now it is 15%. We have been seeing a CHF specialist for almost a year and she is wonderful and a great resource for our disease. We went this past Monday to the clinic to check her ICD. Her cardiologist told her he had done all he could do and suggested sending her to a doctor to see if she would be a candidate for a heart transplant. We, of course, reminded him that her lungs would not allow it. She cannot take the medicine Coreg but does take enalapril. I think this was a shock to my mom, but not to me. I was just wondering if anyone out there can advise me on how to comfort my mom. Thanks, Vonda. jmgandme@aol.com


Valerie R's August 9 reply to Vonda's August 9, 2003 - Hi, I am a 60 year old female with an EF of 10%, IDCM and CHF. I take Toprol-XL instead of Coreg, and have an ICD. I was diagnosed in 1995.
     I have 3 questions: How does your mom feel physically; What does her CHF specialist say; and I know this must sound strange - exactly why is she upset? Is she upset because she cannot have a transplant evaluation or because it has been suggested to her? Being where she is in most respects prompts these questions. vgrogers@aol.com


Ellen's August 10 reply to Greta's August 8, 2003 - Hi, Thank you Greta for the suggestion. We started attending a new church in January. The people and the pastors have been very supportive. Although we haven't joined the church yet, we plan on it. We live in a small town in Indiana and Wayne is in a hospital in Chicago, which is about 90 minutes away. The pastor and assistant pastor have visited him a few times and have made calls to him.
     I will ask around at the church. I am trying to find people who have had an LVAD or have one. I checked the Me Too pages and found two listed as having one in the past. One's e-mail is no longer good so I am hoping the other one will respond. This past month has been very difficult for the whole family, but God is with us and we have a lot of people praying for us. Thank you again for the suggestion. ESmith2673@aol.com
 
Jon's note: Not to beat a dead horse, but try having your pastor contact churches in Chicago of the same denomination to help - if Nazarene, contact other Nazarene congregations, etc.


Joy K's August 12 reply to Vonda's August 9, 2003 - Hello Vonda, I was diagnosed with DCM and CHF March of 2001. At that time I could not comprehend a heart transplant as part of any plan for me. I am a registered nurse forced into early retirement due to my cardiac problems. After pulmonary edema due to toxicity of beta-blockers, leaking mitral valve (something else new for me), my cardiologist tried one drug after another. I had extreme reactions to all of them and took no meds for about 2 months.
     We restarted Coreg and raised the dose extremely slowly. Today I am at 12.5mg BID, which is certainly not target dose. Your mother's cardiologist seems to have limited your mother's choices. When our choices are limited, despair and depression may set in. Support your mom by being there for her and by listening to her. I know when I was depressed, I just needed to have someone listen.
     I would also opt for another physician's input. Today I can talk about a heart transplant as being an option but thank the Lord at this time, my medication, diet and exercise are keeping my CHF controlled. Give lots of hugs to your mom. I hope this helps. Joy. Pjkachel@aol.com


Susan B, August 12, 2003 - Hello everyone, I wanted to post some happy news. My stepfather's father (Jess) is resting from having a pacemaker put in last week (Friday). Jess came down for my grandmother's funeral and he could not catch his breath or walk more than 5 feet. He would pretend to look at something every few feet so that we would not notice that he just could not walk.
     Jess wanted to go back home but my mom talked him into going to the doctor - good thing. His heart beats were between 28 and 50 beats per minute. It's no wonder his lungs were filled up. Jess told me that he thought he had just lived too many winters and summers (he is 85 years young). I told Jess that it did not hurt to go to the doctor and see if he could get better. He is sure glad he went to the doctor.
     When I talked to him his first day in the hospital, he said that he was much, much better. The doctors got the fluid out of his lungs in the first 2 days. Now I think my mom and Jay (her husband) will have a hard time keeping Jess resting for this first week. Jess wants back out on the golf course as soon as possible.
     The other good thing is that my mom is doing fine with her new pacemaker (installed July 1st of this year). Her heart was only beating 47 beats per minute. It was a good thing for Jess that mom has just been through this because Jess' doctor did not provide the same information that mom's doctor did. My mother's doctor gave her so much information, but Jess' doctor did not even give him basic information. As everyone is always saying around here, the right doctor is so important. Jess is changing doctors when he goes home next week to one in Iowa.
     This shows me that timing is everything. If Jess had not wanted to honor my grandmother at her funeral he might not be alive today. My mom might not be with us if she had not taken exchange students on a trip to Jefferson City. It was only because she was not able to walk up the hills that she went to the doctor and found that she had bradycadia and sarcoidosis.
     The next bit of good news is that my husband (age 48) with DCM is doing well. His heart is staying in good rhythm (sinus rhythm). I hope his EF stays up at his next doctor's visit in October to the 50% (up from 15 to 20% almost 3 years ago). His heart was also back down to normal size. Also, I counted that we are only going to the ER every 4 months - not too bad.
     I have had so much bad news this last year, I wanted to share upbeat, happy news with you all. Thanks Jon, for letting us vent and share here. Susan B. gbratcher@kc.rr.com


Carol's August 14 reply to Ellen's August 8, 2003 - Hi Ellen, My husband had the LVAD for 7 months. I had to quit my job but he had two strokes a month after receiving the LVAD. We had home health come 3 times a week. Be prepared for quite a shock when you get home.
     That was a long 7 months: He lost 50 lbs, but he needed to lose it anyway. It was worth it though - we received our heart transplant on March 17th this year, 5 months ago this week! We were on the transplant list for 2-1/2 years. He's doing great, but I'm still not working. jcloyd@mikrotec.com


Steve, August 18, 2003 - Hi, With all due respect, sometimes death is a friend. I just got out of a convalescent home and I'd rather die than go back. Imagine lying in bed all the time, screaming at the walls because your mind is losing it, and in constant pain. This is what I observed a lot of old people going through. My soul is at peace with God and I'll accept death as part of my future but I'll never go back to a rehabilitation site. steve.wimer@verizon.net


Lora, August 19, 2003 - Hi, I just came across this site checking out all the stuff on CHF. Wow, there is a lot to absorb! My father-in-law has CHF and has been in and out of the hospital so much lately that I feel at home there now. I am so confused though. He has had CHF for 13 years now and he is 70 years old. His doctor says he has lived longer than anticipated but this doctor just confuses us because he mentions my father-in-law's liver and heart being enlarged, his being on the highest dose of Lasix and now the doctor tells us that it might be his gallbladder. What really puzzles me is that Dad's lips and ears turn dark blue and purple. Today while visiting him, I noticed that the veins on the corners of his eyes were bulging and purple. Has anyone out there ever noticed anything like that with other CHF patients? Some said this is a sign that he is near the end. What are the stages of CHF or are there any? lhyatt@catc.net
 
Jon's note: If humanly possible, get a second opinion immediately from a heart failure specialist!


Jerald P's August 19 reply to Steve's August 18, 2003 - Hi Steve, As the result of an auto accident in 1967 I'm a high level, total care quadraplegic and because of the cost and amount of help that's necessary to keep me going from day-to-day, I have no choice as to where I live. Fortunately for me, I'm in one of the better Convalescent Centers amongst those that accept Public Aid recipients and even here there are shortcomings. I know exactly how you feel about your experience. Unfortunately, the less fortunate people in our society are one of our government's lowest priorities. Jerald P. jpelzer@prodigy.net


Vonda's August 21 reply to Lora's August 19, 2003 - Hi Lora, It's strange that you mentioned the corners of your father's eyes being bulged and purple. My Mom is 58 and has CHF. It is in her eyes that I can tell when she is at her worst. For the past few days, they have very puffy in the corners and blue looking. I do wish that someone out there would reply if it is related to the CHF. Everytime I mention her eyes being puffy, she'll say that it is her contacts or allergies. Lora, stay tuned into Jon's site and you'll learn much about CHF. Good luck with your Dad. Vonda. grakey@aol.com
 
Jon's note: CHF can cause the tear ducts to swell, and lack of circulation can damage the small arteries in the eyes. That's why a fundoscopic eye exam can spot coronary artery disease or heart failure. Heart failure meds can cause dry, irritated eyes.


Marie Mueller, August 22, 2003 - Hi, I just found out my 18 year old daughter has CHF, and it was quite a shock, I can tell you. I am really nervous since I can see that it looks like a long haul for much improvement, based on what I have read. She also has a blood clot in her left ventricle due to not finding out about her heart problem until 8 days ago.
     I am really grateful to find a support group, but I would like to know if anyone else knows someone so young to have this. She is sleeping most of the time but seems in good spirits considering the week we have had. I am glad to have found you all. Marie. muellermr@comcast.net


David McFarland, August 23, 2003 - Hi from Ireland, I have just stumbled across your forum and need time to digest all I see there - particularly about needing a transplant. I have been ill for over 18 months and am waiting for a heart transplant because of idiopathic cardiomyopathy. I hope to visit here more.
     While I have been ill, I have been able to start a little web site called 2hearts, offering spiritual support to anyone who faces the trauma of heart illness. I am not seeking merely to promote a web site but sincerely offering support and encouragement. God has been so good to me. Thank you. 2hearts is located at www.2hearts.org.uk. david@2hearts.org.uk


Susan B, August 24, 2003 - Hello all, I have been looking for some information regarding pacemakers and I have not been able to find it. How often should the pacemaker be checked? My mom and her father-in-law have both had pacemakers inplanted in the last 2 months. Both pacemakers are Medtronic models. My mom's has 3 leads and Jess's has one lead. My mother's doctor is having her pacemaker checked with the calender, which is scheduled for the next 2 years. Her first checks are every 2 weeks. Jess' first post-hosptial check is not scheduled for a month after surgery. We are just trying to get some guidelines.
     It has been a good thing that my mother just went through this because Jess' doctor is not telling him anything. Jess lives in another state and he was just visiting when we noticed he was ill. Jess is getting a new doctor, but we still want more information. My mom got him a tape to watch from the company. However, the company would not say how often the pacemaker needs to checked. Thanks, Susan. gbracher@kc.rr.com


Anne's August 25 reply to Susan B's August 24, 2003 - Hi, My husband has had a medtronic biventricular pacer since September of 2001. He had it replaced in December of 2002 because the the battery wore out. His doctor or the nurse practitioner in his office checks the unit every 3 months. They check for episodes, that the thresholds are still set correctly, and battery life. I'm sure they look at other stuff but the squiggly lines all look the same to us. ;-) amy412001@yahoo.com


Jon, August 26, 2003 - Hi everyone, The heart forums will be shut down for a few days, most likely. This is due to the worms/viruses I mentioned earlier. If everyone takes me out of their address book, I can have the forums up again much sooner.
     I'll be back when this worm stops causing me hundreds of messages with attachments every time I download my e-mail. It takes hours now to download my e-mail each day. I will put up the posts I have already received by sometime tomorrow.
     Again, please configure your anti-virus program not to send a warning to systems it thinks sent you a virus. Jon.


Crystal S' August 27 reply to Marie M's August 22, 2003 - Hi Marie, I just turned 26 two days ago. I found out I had heart failure 8 months ago: CHF with an EF of 25%, +2 mitral regurgitation, severe left ventricular dysfunction, class 2 to 3. I'm currently taking 12.5mg Coreg twice a day, 80mg Diovan daily, 25mg Aldactone (spironolactone) daily, 40mg furosemide daily, and 20 mEq Klor-Con daily.
     Now that all the technical stuff is out of the way, is your daughter taking blood thinners for that clot? If not, ask her doctor about them. I had clots throughout my heart and lungs, and my doctor didn't do anything until I had a TIA (mini-stroke). Ask questions - they don't know everything! After I took the blood thinner for about 6 months, my clots all went away. My new doctor said that I was young enough that I didn't need to take them anymore after that.
     Also, how did your daughter end up with CHF? What are her meds, EF, etc,...? Mine is from an infection in my heart (myocarditis) from a cold that caused cardiomyopathy, which caused CHF. Look into cardiac rehab as soon as she feels like walking. I started rehab 3 months into this and it has made a world of difference. It doesn't improve your EF but your heart becomes stronger and more tolerant, plus you just feel better getting out and seeing other people with the same condition doing well.
     Please keep the low sodium diet very high on the list of important things to remember; it will save a lot of pain, really. When I had anything salty in the beginning, I felt so "wrong" that I considered going to the hospital. I am so used to not having salt that if something has salt on it, I can't even stand to eat it and I used to dump salt on each bite of a hard boiled egg! Also watch calories because she's not going to be moving around as much and it can catch up with you. I gained 20 pounds after I left the hospital before I realized they are important too. I have finally lost 10 of those pounds.
     Do you have a CHF specialist for her? If not, find one right away. Jon tells us this over and over, and he is so right! I found a doctor at the Cleveland Clinic because of Jon's advice and I don't care that he's 50 minutes away, he's worth it. Don't let her get treated like everyone else; she's young and she needs to be told every option available to her, not just, "Here's your medication ... See you in a few months."
     I remember when I left the hospital that I wanted to dye my hair grey and perm it because I felt so weak and old. Let her know if she feels this way too, that it will go away. The best advice I can give is to read everything you can get your hands on starting with this web site and read the book by Dr. Mark Silver called Success With Heart Failure.
     Don't worry about asking questions. I call my doctor about once every couple of days and they don't mind. If they do mind, find someone else. Jon said something like, if your doctor is too busy to answer your questions something will get missed. I will pray for your daughter and for you. I wish your family all the best.
     PS. Sometimes she may act like you're being too pushy, but just be patient. My mom lectures me all the time. Mostly it starts with, "I was reading Jon's web site today,..." about salt and fluid and just about everything else. <g> Even if I roll my eyes at her and say, "I know, Mom!" I really do appreciate her in every way. I couldn't have made it this far without her. alanis143@yahoo.com


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Katherine H's August 27 reply to Susan B's August 24, 2003 - Hi Susan, I have a biventricular pacer too, implanted 9/6/2002. After monthly checks for the first 3 months, I now go once every 3 months for the interrogation with the pacer nurse and the computer. I also see the cardiologist every 6 weeks to 3 months as we continue to tinker with medications.
     You might want to go to www.implantable.com for additional information. There are some knowledgeable people there who know a lot about pacemakers and defibrillators. kholian@msn.com


Francine, August 27, 2003 - Hi, I have been reading off and on here, but have not posted in quite awhile. Now I am looking for a little advice. My mom is in end-stage CHF. She is 77 years old and suffered a massive stroke 5 years ago. She has been in a long-term care facility since then.
     In the last year, she has had numerous flash episodes of CHF. Her last episode was this past weekend. Since June she has been on comfort measures only, morphine as needed and 80mg Lasix a day. Her attitude has been great - cheerful and upbeat until this last episode.
     Now she is having horrible headaches which the doctor says is due to oxygen not getting to her brain. She says she doesn't feel well and is very tired. They are telling me that she will start to seem confused at this point. I feel she is ready to die. Are there any signs I can watch for? I have called family members and told them that they should come to see her if they want.
     I keep thinking I am so organized and have done all I can. Today it is hitting me that I will miss her so much. Francine. franniepoppins@verizon.net


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.

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