Mayo Clinic Connect
I have been diagnosed with “stiff heart” and would like to have as much information on this topic first hand. Any way to improve this conditions? What do I expect as it progresses?
Liked by Solo Act, jodeej
I have Diastolic heart failure as a result of HOCM!
I have been through many medications and surgeries in last few years to address issues caused by HOCM. As a result I am having heart failure and am being put on transplant list, which does not come without its own major drawbacks.
It started out with little Arrhythmias and just blossomed from there over the last 10 years.
Medications played a big part in keeping me healthy and functioning in the meantime.
Having a cardiologist and pulmonologist that are good and work together is a blessing!
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@ninimurphy, I am a liver/kidney recipient, and I can recall the moment that I found out that I would need a transplant. So, I and the other transplant folks, can understand the many thoughts and questions that consume your mind at the present moment.
I want to personally welcome you to the Transplant Discussion Group, as @hopeful33250 has suggested. If you see a topic that interests you – jump right in and ask as many questions as you want. Or know that you are welcome to begin a new discussion. If you need help with that, let Teresa om me know and we will be happy to help you with that.
You are indeed fortunate to have a cardiologist and a pulmonologist who are working together to provide you with the best care.
Whenever you are ready to talk about it, How can I best help you?
Liked by Teresa, Volunteer Mentor, JK, alumni mentor
I too have been diagnosed with stiff heart causing heart failure. I have AF as well and Fibromyalgia, Plantart Fasciitis in both heels. I was told by the Consultant yesterday I have a condition that they think is from birth, A thickening of the heart muscke at the sides and top of the heart. He has given me 6 months the sort myself out. Firstly I have 6 months to lose 2 stone in weight and also to do more exercise. He understands it is difficult for me with the Fibromyalgia that seems to break through in my right knee and thigh. Moving around not a pain in one okace. I cannot walk far because of the breathlessness or do any physical exercise like carrying things or bending to lift things up. I do TaiChi every week and have Traditional Chinese Medicine in the form of acupuncture.If I don't get the weight down he will no longer see me. He thinks the problem has been there from birth. Has anyone else had these same problems together? I an going to give it my best shot. I want to live life.
@thankfulalways Stiff Heart? AF? Fibro? Plantars? I suspect a hereditary form of Amyloidosis. Mine is Gelsolin. https://bit.Ly/1w7j4j8 "Amyloid and Old karl" This is a very slowly progressing disease. Get your info from Alnylam.com, Mayo, Sloan-Kettering, etc. NOT your local doctor. Most 90 % of local doctors will never make the diagnosis. My local has missed it twice that I know of, becaus he does not know anything about the disease.
Does anyone know what the medications are for this condition and what they are. What side effects etc. Thank you all for your replies. I am not doing very well at rhe weight loss because I have torn the cartilage in my knee. Have had to rest it a lot for the past 5 weeks. Cant walk far without it flaring up with pain. Goodness knows when it will heal. I list 6lbs prior to this happening. Any help is always appreciated. Thank you all once again.
Liked by Teresa, Volunteer Mentor
I just read your most recent post and was touched by all you have been through over the past few years. I was also touched by your attitude and the fact that you expressed gratefulness for your medical team in the way they work so well together.
As you are now experiencing heart failure and your doctor is suggesting that you be put on the transplant list, I would encourage you to join the Transplant discussion group here on Mayo Clinic Connect. There you will find the Members much like yourself. They have amazing attitudes and gratefulness for all the help they have experienced. So many of them have been transplanted and are feeling so much better now. I believe that you will find encouragement and help as you face the next step in your healing. Here is the link to those discussions, https://connect.mayoclinic.org/group/transplants/
I would also like to tag the Mentor of that group, Rosemary (@rosemarya) to this discussion. Rosemary has been double-transplanted with a new liver and kidney several years ago at Mayo Clinic. I would also like to invite JK, (@contentandwell) who also received a new liver at a hospital in the Boston area and @jodeej whose husband was recently transplanted at Mayo. They are all living (and smiling) examples of how good life can be post-transplant. I'm sure you will enjoy getting to know these courageous (and thankful) ladies.
Will you keep in touch and let me know how you are doing?
I will definitely check out these and keep in touch.
I am in New York and deal with Columbia Presbyterian.
I have heard many wonderful things and then heard about
End of life care, trading one major problem for another, etc…
It causes quite the roller coaster with your emotions. I am in a support group in upstate NY which helps.
All the surgeons that have operated on me smile and say, you got this, no problem. They know I am an easy patient and will do whatever necessary. It’s hard because I want the truth, but there is a fine line between honesty and brutally honest when first faced with heart transplant ( along with waiting for new guidelines that will help me). I am not close to any Mayo Clinic, nor do I have any family by any of them, but am interested in any info I can get.
Thank you !
Liked by Rosemary, Volunteer Mentor, Teresa, Volunteer Mentor
Weight gain is a big thing when you can’t breathe or exercise. Some of your weight could be fluid retention from stiff heart. Did they check you for HOCM?
Are you on a diuretic?
If your doctor does not want to help you, even after losing 6 pounds, I think you need a new cardiologist. I see 8-10 heart doctors and only one made a big deal out of my weight. I sat for 2 years and gained 40 pounds. I lost 20 of it and they were all thrilled (granted 8-10 of mine was fluid) I’m still trying, but it is real important to have doctors who support you, not put extra pressure on you. Dealing with heart issues is enough pressure.
That is just my opinion.
I can understand how frustrating it would be to try to lose weight when you have a hard time walking because of a knee injury. There are lots of chair exercises programs on Youtube. You might check them out and see what your doctor has to say about their safety for you.
Liked by lioness
@thankfulalways Lots of rest. Side Effects? get lazy, I suppose. It is an autoimmune, and up to now incurable and fatal.
@thankfulness hi Ive been reading your post and will keep you in my prayers Where I life in a Sr. Building I started chair exercises here with a tape its Betty Swike chair exercises As Theresa said there are alot on You tube but if you have a DVD you buy her tape I th ink she is on u tube also another one our group likes is Jan ?? tinkey its easy also. Good luck ☺
Liked by Teresa, Volunteer Mentor, ninimurphy
@ninimurphy I know it can be difficult to face a transplant, and frankly initially I was not sure if I wanted to do it. When things got worse though I was ready to proceed and thankfully not too long after that I did have a liver transplant.
Having a life-saving transplant changes everything. You never look at things in the same way again, and are grateful for every day that you are given. I feel great, no ill effects from the transplant. I do of course have to be careful of infections due to the immunosuppressants and right now I have the second cold I have had in a few weeks! This did not happen last year, I don't know why it is now, but I am in that miserable, coughing, sneezing, sore throat, headachy type of feeling so taking it easy today. No temp, this is just a cold.
Speaking of transplants, today is my "transplantiversary". It's been two great years. It really is like a re-birth.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, Teresa, Volunteer Mentor, lioness
Thanks for your encouraging words, @contentandwell. Happy transplantiversary! I am glad that you are here with us and so healthy and helpful! I hope you get over your cold soon and get rid of it for good. A lingering cold makes everything else seem miserable. Take care.
Liked by Rosemary, Volunteer Mentor, JK, alumni mentor, lioness
Re-birth ! Love that phrase ! My sister-in-law is a cardiac icu Nurse and told me that is what it is. A chance to live longer than you had. A chance to feel better than you have in years. She is another person that has been so supportive of all I go through, and tells me the truths, but kindly.
I am sorry you are sick. I have had a miserable run of bronchitis, strep, ear infection and conjunctivitis (swear I get it at hospital visits). I can’t seem to shake it. I was wondering if because I am so worn down all the time.
Anyway, congratulations on your anniversary and hope you feel better soon! 💐
Liked by JK, alumni mentor
@Contantandwell. Congratulations warrior it is a re-birth I didn't have a transplant but CAD
Liked by Rosemary, Volunteer Mentor, Teresa, Volunteer Mentor, JK, alumni mentor
@hopeful33250 Thanks Teresa. I hope I get over this cold quickly too. The one I had a couple of weeks ago was right after our visit with our daughter in NYC so I thought maybe I picked up some germs there but I can't blame NYC now. Fortunately that one did not last too long. I really planned to get to my health club today and am very disappointed that I cannot. I need to get that exercise. Some days I hate going and have to force myself (and sometimes I do not manage to force myself at all, I stay home like a slug), but today I was rarin' to go.
It really does not seem possible that it's been two years.
Liked by Teresa, Volunteer Mentor, lioness
@ninimurphy I do think hospital visits can cause you to get sick, it may be best to wear a mask when you go there. Sorry you have been through so many ailments. If you are worn down then I am sure there is a connection with you being able to shake things off. When my children were young I used to tell my son he had to get his sleep so his "GI Joe's" would be strong to fight off germs. I was fairly strict about them getting to bed at a good time and they really did not get sick as much as many children do.
I bought masks for flying that have an anti-viral coating. I did not wear them last year when we went away in the fall but I did in February when we went away. I figured that was in the middle of flu season. They are an inconvenience but I would rather have the inconvenience than get sick, particularly when we are flying to somewhere. I don't worry about it quite as much when we are flying home, although I did wear the mask then too.
Liked by Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
@lioness I actually had to look up CAD, it didn't immediately come to me. So what methods did you have to help you with that, a bypass?
I always assumed I would have heart problems because both of my parents passed away in their 60s from heart problems but so far my heart is good. My sister and I have spoken about how in those days people didn't get the exercise that most of us do now. That has to make a difference, I am sure. Of course my problems were from allowing myself to be very overweight for many years. Because of that I hate it when I see young people who are very overweight. I don't want them to pay for their mistakes like I had to.
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