The paperwork never ends The Archives
Loved Ones - May, 2001 Archive Index

Bev 5-4     feel pressured by doctor
Jon's 5-4 reply to Bev's 5-4     feeling pressured by doctor
Susan G 5-5     seek advice, tips, suggestions
Lee R's 5-7 reply to Susan G's 5-5     meds, valve repair, docs & more
Barbara 5-7     questions about my daughter's treatment
Jon's 5-7 reply to Barbara's 5-7     I hope others reply also
Karen 5-8     seek "end-stage" experiences & more
Debbie 5-8     what can we do?
Ben B's 5-9 reply to Karen's 5-8     hopefully he'll get better, drinking
Sharon B 5-10     update, doctors
Jons' 5-10 reply to Sharon B's 5-10     doctors
Connie M 5-10     my husband got a new heart!
Judy H 5-12     update, not so hot
Hanna 5-12     update, questions about tests results
Valerie 5-14     husband not the same man, what to do?
Nadine S 5-14     husband not the same man, what to do?
Judy H 5-15     has anyone else traveled this road? Please
Rose 5-15     seek advice on mother in law's future
Jon's 5-15 reply to Rose's 5-15     I hope others reply
Julie G 5-15     to Valerie and Nadine
Bill D 5-16     to Valerie and Nadine
Kathryn C 5-17     depression and CHF, prayer request
Connie M's 5-18 reply to Kathryn C's 5-17     support groups
Jon's 5-18 reply to Kathryn C's 5-17     Me Too listing
Susan B's 5-18 reply to Kathryn C's 5-17     insurance laws, coverage
Shannon 5-23     seek help for my mom
Jon's 5-23 reply to Shannon's 5-23     I hope others reply
Kathryn 5-23     update on my son
Cheryl Thorne 5-23     how can he lose weight?
Jon's 5-23 reply to Cheryl Thorne's 5-23     losing weight
Wanda 5-23     seek info
Jean H 5-25     seek advice
Sharon 5-28     seek Natrecor info
Jon's 5-28 reply to Sharon's 5-28     Natrecor info
Jean Ann Hudson 5-31     drug side effects - seek input

Bev, May 4, 2001 - Hi again, I am on my way back to the hospital this morning but have another question since the hospital called in a psychiatrist yesterday and he wants to put my husband on aricept and ritalin. He said these will speed up the heart rate and since my husband already has an enlarged heart and his EF is around 35 - 40% I am afraid to okay this. He is already on Paxil but they reduced his dose to 10mg from 20mg in the hospital. I don't know why. The psychiatist will not increase it back to 20mg unless I agree to have him put on the other drugs. I feel like that is almost blackmail. I think they are trying to get me as depressed as he is. Any help on these meds or my relocation will be so greatly appreciated. I have to leave for the hospital. Thanks again.

Jon's May 4 reply to Bev's May 4, 2001 - Hi Bev, Is your husband competent? If so, what does he want to do? If not, and you must decide for him, then I have just a comment or two but no real answers for you. If the psychiatrist will sit down with you and explain in plain English why he wants to do this, give him a listen and then decide for yourself.
     If he does not agree to do so, get another opinion, absolutely. No doctor should withhold one med or a given dose of a med - especially if the patient has been on that med at that dose previously without serious problems - to force a patient to accept other meds about which he is unsure. It is not to be tolerated under any circumstances.
     However, be sure that he just failed to explain because he was in a hurry or something. In other words, give him a chance to lay it out in plain English and persuade you that this is better for your husband, but do not allow him to pressure you or get away without explaining it - in plain language. If he refuses to do it your way, he may not be acting in the best interests of your husband's health. Jon.

Susan G, May 5, 2001 - Hi, My husband Stephano is age 44 and was diagnosed with idiopathic dilated cardiomyopathy after a cardiac cath procedure in November of 2000. At the time, his EF was estimated at 28% with class 2 heart failure, though his heart was not too enlarged then, or now for that matter, which indicates sudden onset. His cardiologist suspects a viral cause although no biopsy has been done yet.
     After a hospitalization recently and a rapid deterioration, which has taken him down to class 3b heart failure, he was today told that it is time to start the work-up for a heart transplant. This is confusing to us since we are compulsively medically compliant with sodium intake, medications, appointments, etc,..., and he is in a normal weight range with no smoking or drinking. He is even a vegetarian except for fish and has received weekly therapy since diagnosis to increase coping skills, along with weekly acupuncture. He also has a strong support network and a good spiritual base. Stephano was not able to tolerate a beta-blocker (Coreg) after a 3 week trial in january of 2001 due to severe lethargy and some depression, but now we are more open to this idea regardless of negative symptoms, in order to avoid transplant.
     Stephano also has a more pronounced mitral valve prolapse on examination; his MVP was not even audible to most doctors before his diagnosis but is now the first thing noticed by those unfamiliar with his condition upon examination. Does anyone have any information of improved health outcomes following mitral valve repair/replacement after dilated cardiomyopathy diagnosis? Any other hints or helpful suggestions? He is currently taking spironolactone (Aldactone) BID, Diovan, Fosinopril, and Lasix as needed. Any input or support would be appreciated. God bless all who read these pages.

Lee R's May 7reply to Susan G's May 5, 2001 - Dear Susan, There are other beta-blockers out there that possibly Stephano could take. I was very depressed on Coreg too, and had to stop taking it. We finally tried Zebeta and then upped my Prozac (an antidepressant) a little bit (5mg) and it seems to be doing the job. The MVP could also be causing additional tiredness.
     Maybe you just need another opinion and as Jon would say, is your physician a CHF specialist? I do not know much about spironolactone (Aldactone), but is your husband taking an ACE Inhibitor? It does sound strange that they are focusing on a heart transplant rather than eventual MV repair but there may be more to the diagnosis. I hope that some of our other folks out there have some ideas for you. We're pulling for you. Bestest, Lee.

Barbara, May 7, 2001 - Hi, I am confused. My 18 year old daughter was diagnosed with CHF and peripartum cardiomyopathy in November of 2000. She takes digoxin (Lanoxin), Altace and Coreg. She was taken off Lasix but I will also say she is anemic and sometimes potassium deficient. She does okay but as her baby gets heavier, it is harder and harder for her since she lives in an upstairs apartment. What I am writing about is that her stomach stays upset a lot and she often experiences SOB and extreme fatigue. What causes the diarrhea? She eats but loses weight and is only at 100 lbs now. Her doctor has not told her to exercise nor run any stress tests, which I find odd. He seems to be quite respected in her area but is also very busy. Her EF was 12 to 20% in the hospital and she also has a hole in her ventricle.

Jon's May 7 reply to Barbara's May 7, 2001 - Hi Barbara, Is her doctor a CHF specialist? Jon.

Karen, May 8, 2001 - Hi, My husband was diagnosed with CHF over New Year's Eve of this year, although looking back I believe he has had it much longer. He was seeing 3 different doctors and has taken many medications but I've seen his stomach swell again over the last couple of months and his coughing is about the same as it was before being admitted into the hospital. I have the number of a clinic in Mobile, Alabama that I will call tomorrow, thanks to Jon's site!
     I'm scared that my husband may be in the end-stage. I'm only 31 and we have 3 small children. I'm so afraid he could die at any moment that I can't really sleep and I hate to even see him go off to work. He is a broadcasting engineer and IT technician, so sometimes his job is stressful. He stays depressed (and I would be too) and is tired all the time and short-tempered. He is 56 and a workaholic. He likes to drink rum and coke every day after work, although I've told him not to! We are both frustrated with the doctors in this area and have found out that none of them are really CHF specialists. I'm too young to be a widow, and I'm scared. Do any wives have any suggestions or can you shed some light on this "end-stage" thing? Thanks so much, Karen.

Debbie, May 8, 2001 - Hi, I have posted here before about my brother, who is 46, with CHF. Recently he went to the doctor for the first time in 3 years and his blood test results came back. The doctor had to send them certified mail because my brother would not call the doctor back. Well, we found out that not only is he in heart failure right now, he also has acute liver damage and his kidneys are shutting down.
     Since we cannot get him to go for treatment, his doctor would only tell us that he is in critical condition and needs immediate medical attention. We are at a loss about what to do. Do we just let him die without us trying? We need advice. Thanks, Debbie.

Ben B's May 9 reply to Karen's May 8, 2001 - Hi, A lot of people think they may be end-stage the first several months after diagnosis but few are. Most people improve with proper meds. Hopefully, this is true for your husband so I wouldn't worry about the term "end-stage." On the other hand, people with heart failure shoud drink no alcohol, absolutely none. If you have CHF and can't stop drinking, you may have a problem other than heart disease. I know nobody wants to hear this, but it could be true.

Sharon B, May 10, 2001 - Hello to all, My husband had his appointment with the cardiologist on May 2. I don't know what I was expecting but we did not get a lot of input. I had to ask about the beta-blocker since I don't think the doctor was going to put my husband on one until I said something. He put him on 25mg atenolol. I had to ask about his blood test and if they were going to schedule one for him since it's been 3 months but the doctor had no idea. His main concern was checking with JFK hospital where Mickey was in January to see if they felt he could take an operation for the artery in his neck or if they thought his heart is too bad. We haven't heard anything yet.
     He said my husband is in moderate to severe heart failure. Would that be class 3? He is doing so well but after I heard that, I really don't know what to expect. He also said that his heart will have no healing. I thought you had the first year to try and heal things - maybe not perfectly but somewhat. There are so many questions. We just do the best we can day by day. I hope everyone's loved ones are doing well and I thank God for this site; it is so helpful. Sharon.

Jon's May 10 reply to Sharon B's May 10, 2001 - Hi Sharon, If your hubby is feeling pretty well, don't let a doctor's verdict get you down. Believe me - I was supposed to die 18 months ago according to the doctor I had when I was diagnosed. You might notice that I am still around. ;-) If you leave a doctor's appointment with as many or more questions than you had when you walked into his office, try another doctor. I know that's not what you want to hear. Changing doctors is something that makes me cringe when I must do it. However, it is the only way to get proper treatment: keep firing them and hiring them until you get the right one for your situation. Jon.

Connie M, May 10, 2001 - Hello everyone, This is just a quick note to let you know that my husband Jack received a new heart on 5-8-01 and is doing very well. We finally (thanks to this site) found a CHF specialist and 133 days later, we have a heart. He was in the hospital for 49 days and will have to stay close for weekly check-ups. The Lord has really blessed us. Thanks for all the prayers and may God keep you, Connie Miller.

Judy H, May 12, 2001 - Hi, I am still recovering from the bad but confusing news we received Wednesday from my husband's cardiologist. The ultrasound was worse than the last one. Bob's EF is 15% and he has a small blood clot in his left ventricle. He's now on Coumadin for that. We were really hoping for an improvement in EF due to the Coreg he's been on for several months now. He's been taking 12.5mg twice a day. That's the most he can tolerate with his low BP. Strange thing though, is that he can pretty much function at class 2-3. When he was diagnosed in 1998 with an EF of 25% to 30%, he functioned as class one.
     What I'm doing now is getting all his records together again and we're going back to Cleveland Clinic to see a doc there. I guess it's not a surprise because he was at 15% to 20% EF back in August of 2000 but because he could pretty much get around like normal, he was not even considered for a transplant. We're not even sure if that is what we want. Thanks, I just had to tell people who understand. Thanks, Judy H.

Hannah, May 12, 2001 - Hi, My husband was to see his heart specialist yesterday and he saw a notation on his chart from blood test results from last time he was there. It said there had been water in his blood. Is this a normal thing for someone who retains fluid? His weight is up again. He has been bouncing around between 276 and 290 pounds. Yesterday it was 290. The doctor said they are squeezing him pretty tight but they are going to have to squeeze him tighter. He upped his zaroxolyn to 3 times a week from one, and continues Lasix at 80mg per day. He also upped his potassium pills from 10 to 12mEq. The same blood test from a previous visit showed his potassium level at 3200. He said it should be 4000 to 5000. Any thoughts?

Valerie, May 14, 2001 - Hi, I am new to this. My husband had a quadruple bypass 2 years ago and my whole life has been in an upheaval since. I am blamed for everything. He has been at death's door and back. and he states now he is doing for himself, what he wants when he wants and oh well with me and the kids. I have been told to pack and get out. He says I am sick in the head but he is never wrong. He also has a lot of mood swings after he had a beer or two but won't admit to that.
     What is a wife of 23 years to do? Help! I am ready to leave it all and move away by myself, even though I love him and really don't want to see this happen. He is pushing me more and more away. Any help or suggestions will be greatly appreciated. Thanks, Val.

Nadine S, May 14, 2001 - Hi, I've posted here a few times and have received some very encouraging e-mails regarding my husband, who was officially diagnosed in November of 2000 with CHF and cardiomyopathy. In March of 2001 he had a normal EF on echo and a very good Vo2 max result. It was like a new lease on life.
     I guess he took it literally, and has suddenly moved out of our home to "start over." I am devastated. I know that stress is hard on families but can CHF, the meds, etc,..., cause some kind of emotional instability? He is not particularly rational about many things and this sudden action was quite out of the blue. Now I'm worried he'll be sick again and I have no input, and our kids will lose out the most. He did end up in the emergency room last week, a few days after he moved out on May 1. What a mess.

Judy H, May 15, 2001 - Hi again, After looking at the written report of my husband Bob's ultrasound, we realize it is worse than we ever imagined: Markedly dilated left ventricle with EF less than 15%, moderate biatrial enlargement, moderately severe mitral and tricuspid insufficiency, mild pulmonary hypertension, plus a thrombus. The cardiologist has said he can do no more as far as drug therapy goes. Bob and I are grieving, to say the least but we are grateful that he is still able to carry on, for now. We have an appointment for Thursday at Cleveland Clinic. I would really appreciate hearing from anyone whose loved one or who themselves has been down this road. Thanks again, Judy.

Rose, May 15, 2001 - Hi, My mother in law has right sided heart failure as a result of severe emphysema. She is 72 years old. She has severe swelling of her feet and legs, also much shortness of breath and fatigue. In the last week she has been diagnosed with an enlarged liver. Does the liver enlargement signal severe heart failure, and should we be thinking of persuading her to sell up, and come and live near us? She lives alone in a city several hours from us. I don't know if she is likely soon to need some nursing care. With the liver involvement it seems her condition is deteriorating and we need to make plans for the future. I don't know if CHF is rapidly progressive or whether she can remain independent for quite awhile yet. Any thoughts would be much appreciated. Thank you very much in advance, Rose.

Jon's May 15 reply to Rose's May 15, 2001 - Hi Rose, I hope others reply with more info, since I am only addressing one small issue. Liver enlargement is a classic sign of decompensated CHF and may well disappear completely once her edema is under control. A good CHF doc can probably have her edema under control in a matter of days, so be sure she is seeing one. Jon.

Julie G, May 15, 2001 - Hi ladies, I can only tell you what I went through for a couple of months after my diagnosis. I became bitter and depressed. If it had not been for my family, I probably still would be. If you go to the doctor with your husbands or can call them and talk to them, maybe they need to be put on an antidepressant for awhile until they realize they are not going to die tomorrow. After all, no one knows the hour or minute. I will be praying for you and your husbands both, Julie.

Bill D, May 16, 2001 - Dear Valerie and Nadine, When I got this stuff (illness) I was very depressed. I thought suicide the best way out. They put me on Zoloft for a couple of months so I'd get my act together. I had thoughts of kicking my Rosie out so I could commit suicide by myself.
     Nadine, I thought he may coming back when he realised that no one was worrying about him. Valerie, move away and you'll have him begging for you to come back! Just my 2 cents, Bill D.

Kathryn C, May 17, 2001 - Hi, Depression is a family affair. My son, who has had CHF for almost 2 years, has just hit the wall of depression big-time. He was on celexa for depression for the first year, then he went off the celexa because of weight gain (not good for CHFers). Now he is really suffering with depression and his weight is no better. He was so bad the night before last that I ended up taking him to the emergency room.
     After sitting there for over 2 hours the social worker talked to him and then the staff ER doc; they had no psychiatrist on call. They only told him to call some 800 numbers and try and do things that made him happy. He was so worn out after the long wait that all he wanted to do was go home and get some sleep. He has thoughts of suicide and extreme sadness. I am so scared that I am getting depressed too. I am already on Zoloft.
     My son is feeling stuck in his job and worries about changing jobs because of the medical insurance (pre-existing condition) and he just can't do a lot of physical work. He's a very large man so everyone looks at him funny when he says he just can't do something that requires heavy lifting or the like. He is tired of being different than his friends at age 27, and has deep worries about his future possibilites. This is something I can't help him with. He is supposed to call a help-line number today to get in touch with some mental health counseling services. Please pray for us. I will pray for you all. Thanks, Kathryn.

Connie M's May 18 reply to Kathryn C's May 17, 2001 - Hi Kathyrn, Hang in there. There are some wonderful support groups around, get on the phone and find one. Talk to your pastor and get your son to do the same. Talking to someone in the same boat can do wonders. God bless you, Connie M.

Jon's May 18 reply to Kathryn C's May 17, 2001 - Hi Kathryn, Don't forget to browse the Me Too listings to see who may be in the same age and illness "bracket" as your son for e-mailing. Jon.

Susan B's May 18 reply to Kathryn C's May 17, 2001 - Hi, My husband and I just changed health insurance right after he became ill and I was concerned about pre-existing conditions and coverage. The insurance company told me that under the new federal laws, if you have been covered by insurance for x number of months there was no waiting period. I don't pratice insurance law so this is not intended to give any legal advice. I am suggesting that you talk to the insurance commisioner in your state to see what the law is or you can call the office of your Congressperson. If you are a registered voter, you will get a better response. Tell the person that you are a registered voter, if you are. Please note that this reply does not create an attorney-client relationship. Maybe having the freedom to change jobs will help with his depression. Good luck and you are in my prayers.

Shannon, May 23, 2001 - Hi, I don't know where to start. I am so at a loss of words at this point. I need some guidance. My mom has CHF and coronary artery disease. Most of this started because she had diabetes for over 10 years, and ignored it. From this, she has a list of serious problems including CHF, coronary artery disease, neuropathy, and narcolepsy. She has for the last year really tried to get her diabetes in check and has been put on insulin shots, as well as an oral medicine.
     She has been in the hospital numerous times since November of last year with heart problems. The newest serious issue is that she had lost almost all her blood and had to get 6 units of blood. Every time she has her period, she loses a lot of blood and I mean a lot. The problem is that she is not producing new blood and this last time in the hospital, they told her she was low again, and that she should be seeing a hematologist. This is just another added thing to the list.
     I am sooo scared! She is trying hard but she has really lost her spirit. They recommended she have a hysterectomy but her cardiologist said no way. Then they suggested a shot to throw her into menopause but when we read all the nasty side effects and deaths with this shot, she decided against it. Now what?
     I really wish there was more I could do for her. I can tell she is really hurting emotionally from all this; she has so much wrong with her. I want to help her find that spirit which some people seem to find after either a tragedy or life-threatening thing but I don't know where to begin. My mom is such a beautiful, vibrant person without all this and I want to give her so much back, but I am having a hard time dealing with all this.
     If anyone is going through anything like this, please reply. I want to understand and I want to help. I also want to find someone who is dealing with the same sort of heart-related issues so I can introduce her via e-mail so she can talk to others going through this. I appreciate you reading all of this, and believe me there is more, I am just out of energy. ;-) Thanks so much, Shannon.

Jon's May 23 reply to Shannon's May 23, 2001 - Hi Shannon, I am only addressing the resources available for her to find contacts. Please simply give her the relevant Urls from this site:


Kathryn, May 23, 2001 - Hi, Thank you all for your wonderful support and replies. My son has had a first visit with a new psychiatrist and seemed to be much relieved afterward. The depression seems to be cyclic; that is he seems kind of manic/depressive. Can the medications taken for CHF have this kind of impact on neurochemical balance? My son has ADHD (attention deficit hyperactive disorder). He was under the care of a child psychiatrist for years and took antidepressant medication for years. We think this may be what actually caused his CHF. So we have been very cautious of adding another medication on top of all the CHF meds.
     He was in a CHF support group for about 4 months after initial diagnosis and release from hospital. He found some comfort there but everyone in the group was at least 40 years older than he was and it was difficult for him to relate. I have suggested many times that he go online on this site but he just doesn't do it. I won't begin to guess why. Perhaps he is still in denial of his CHF. As a parent I am in a constant state of worry over not only his physical condition but also over his mental health.
     I thank you all so much for your suggestions. You are wonderful people! I can only pray and hope that my son soon finds a thread of hope to hang on to. He seems better today but I worry what can happen tomorrow. Love to all, Kathryn.

Cheryl Thorne, May 23, 2001 - Hi, I haven't posted in quite awhile but I have a question about weight reduction. My husband Jim, has CHF and an artificial aortic heart valve. His surgery was last August. He lost about 15 lbs after surgery but has gained it all back. He's about 75 lbs overweight. He's finally of a mind to get some weight off but we are having no luck. We went on Weight Watchers together but he's not lost a pound! In fact, he ate too much of the veggie soup made with low sodium broth and gained 4 lbs. He's very discouraged. He's on Coumadin, lopressor, Monopril, digoxin (Lanoxin), and Lasix.
     Can anyone offer any encouragement or trick for a CHFer to lose weight? He's a security guard and walks all day long so he's getting exercise (too much, I'm afraid) but when he comes home, he's absolutely exhausted, takes meds, and sleeps. Any suggestions will be appreciated.

Jon's May 23 reply to Cheryl Thorne's May 23, 2001 - Hi Cheryl, I don't know of any quick ways to lose weight and keep it off, safely. It always boils down to the same old formula, which no one wants to hear. You must eat fewer calories than you burn each day. It really is that simple and only willpower can make that happen. One way to ease the reduction in calories eaten is to eat 6 to 8 very, very small meals each day. It does help. Jon.

Wanda, May 23, 2001 - Hi, I am not replying to a message but rather just trying to find out a little about enlarged hearts. My sister was recently diagnosed with this problem and only 20% heart function. She is also a diabetic. I am wondering what, if any, treatment anyone else has been given for this problem. I appreciate any light anyone can shed on this condition.
Jon's note: I'd suggest starting here

Jean H, May 25, 2001 - Hi, My mother is 89 years old. Last year she started getting forgetful. I think her doctor had mixed emotions about whether she had Alzheimer's or not. While weed-whacking in November, she was hit by a truck. There was no serious physical injury that we know of but she seemed to go downhill after that. She woke me up saying she couldn't breathe during the last week in December, 2000. I took her to an ER. They seemed to think she had pneumonia and she was sent home after a 3 day hospital stay but she continued to have difficulty breathing. When we took her back to the ER they said she had CHF and she was sent to a nursing home for rehab.
     She began bleeding and vomiting, and was sent to the hospital. A GI doctor stopped the bleeding. We took her home, where she stayed 2 to 3 weeks. Swelling continued in her legs and feet. She's allergic to Lasix. We finally took her back to the ER, where the doctor insisted we leave her in the nursing home. She is confused but of course wants to come home.
     Hospice has now been called in. I had an appointment with Dr. Pearce (on your list). His office called and said he had a funeral to go to so she missed her chance. The ER doctor at St. Thomas said he wouldn't put her though a bunch of testing. Every body seems to think, "Keep her comfortable." It's like if she has Alzheimer's, why fix her heart? I am not only miserable in my mind but my body hurts because of this. We have met with the staff and they think she can get better care there. Can you give me some advice? Very gratefully, jean.

Sharon, May 28, 2001 - Hello to all, This is just a quick post to see if anyone has heard about this new drug approved by the FDA, Natrecor. I don't know much about it but another option is always good news. Peace and well being to all, Sharon.

Jon's May 28 reply to Sharon's May 28, 2001 - Natrecor info has been on the IV Drugs page for a couple of years. I have a lot more text info avilable about it that was sent out when I had a mailing list in zip files at the end of the list here. Jon.

Jean Ann Hudson, May 31, 2001 - Hi, I have been a lurker for 3 years and greatly appreciate all the advice. My husband is on all the proper CHF meds and all the COPD meds. All of these have side effects, making him tired, nervous, causing short-term memory loss and angry mood swings. His EF is 30% so lack of oxygen to his brain causes some of problems. He has an internist, cardiologist, and pulmonologist. Now his internist says the CHF and med side effects are not the only cause of his memory loss but he must have dementia, and put him on Zoloft, which so far knocks him out most of the day. Any input?

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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