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2 days ago · Thyroid? Or something else? Constant internal shakiness in Autoimmune Diseases

I guess I am surprised that a biopsy wasn't performed prior to surgery.

2 days ago · Diastolic blood pressure in Heart & Blood Health

This was such a smart process to explore what could be wrong. Maybe anyone with high blood pressure should also consult a nephrologist. I am a heart transplant patient with no previous issue with HBP but with blood in my urine. My blood pressure had increased slowly and my nephrologist placed me on an ARB which would help my kidneys. It immediately brought down my BP. Thanks for your post!.

Tue, Mar 12 1:31pm · SARCOIDOSIS in Lung Health

Hello, @riverotter. It seems we are traveling a similar road. I am a grandma as well and love being with my grandchildren. They live farther away so I can't see them all the time. Prednisone made me gain sooooo much weight and of course if affects your appetite and, believe me, I indulged… too much. So I lost my weight when I went off the drug. Now I'm still on 5 mg and you can see the chubbiness in my face, but nothing like the earlier dosage. I also had trouble giving blood. I tried to use some weights prior to a blood draw and drink plenty of water, but a baby needle was always used for me. There was a wonderful phlebotomist who I would ask for and she knew exactly what to do. I was not shy in talking with those who drew my blood. Some folks get uppity if you tell them what to use. I would just be polite and tell them I had done this soooo many times. I figured it out. I never felt really depressed. I continued to work as a principal at my school in Chicago for four years and then had to retire. Moving to Arizona was great for me; I was volunteering at a local school and soon I was led to Mayo in Phoenix after I needed to be cardio-verted due to an atrial flutter (thyroid craziness). I was originally seen as a heart failure patient and with additional tests – the oxygen exchange test – it became clear that my heart was only providing only 30% of the needed oxygen to my muscle groups. The doctor immediately wrote me up as a potential transplant patient. The next month I needed IV meds in addition to the heart meds I was taking. I was placed on the list and three weeks later I was called for a transplant. That was my trial run, because the Mayo doctors decided that the heart was too sluggish for me. I had been prepped for surgery, woke up in ICU and had no new heart. While the heart had passed all the medical tests, it was deemed "too sluggish" by the surgeon. The doctors at Mayo know their patients very well and knew this heart would not be a perfect fit for me. A month later I received my new heart – a real Ferrari engine. This heart is amazing. I have always hated housecleaning, so you ask about day to day chores……I am now taking classes at the university, traveling to see family, etc. It's an ongoing relationship with my body. My pulmonary function tests had been as low as 62% and are now up to 88% so I know my heart is doing the right thing. My heart seems to be very young, but my husband reminds me that the rest of me is old! If I get tired, I rest. Sometimes I run myself ragged. I loved hiking too and with my bad hip, that might be too much for me. Sorry this is so long and I hope I have encouraged you in sone way. Take care of your body now as much as you can. I know it's difficult. Feel positive and feel joy. It makes a difference. And I'd be happy to answer any other questions or expound on these!!! 🙂

Tue, Mar 12 9:44am · SARCOIDOSIS in Lung Health

Hi …I was diagnosed with sarcoid in 2004 and had to have a heart transplant in 2017 due to sarcoid induced cardiomyopathy. After the removal of my heart, the docs could see the granuloma in my ventricles. The sarcoid started in my eye – with an iritis- and then went to my heart – I needed a pacemaker (we didn't put one and one together yet) – and then to my lungs. I started on prednisone and methotrexate – a powerful but effective combination for me – was taken off of the methotrexate as it interfered with one of my anti-arrhythmia drugs. I was on 45 mgs of prednisone a day for over a year and tapered off very slowly the second year. I then went on azathioprine to manage the sarcoid. I was off of all meds in 2016 when I went to Mayo for consultation for my heart. My EF ratio was 18 at the time. I went on IV meds, was placed on the list and received my heart shortly after that. My heart transplant doctor placed me back on prednisone – 5 mg – post transplant, which I still take. My transplant was two years. He is still concerned about recurring sarcoid. I too have asthma @rosemarya and I'm sure the prednisone helps with that. One item my pulmonologist always checks is my ACE level – blood test. Apparently, one third of all sarcoid patients have elevated levels when sarcoid is active. It soothes my soul when I see the level come back normal. Just a thought. I wish you well. @sarcoidosis

Fri, Mar 1 4:49pm · Anyone have tips on sun protection? in Transplants

Hi Danab, I hope that will be the last you see of any cancer. I had my heart transplant at Mayo in Phoenix as well. Because my cardiomyopathy was caused by sarcoidosis, which can affect the skin ( but for me the disease went to my heart), I have to see a dermatologist every six months and when I go for my annual exams at Mayo, they schedule an appointment with their dermatologist as well. We are 60-240% more susceptible to skin cancer, especially here in Arizona. I have a dermatologist in Tucson also, where I live. He also will do a total body "review" every year to check on possible spots or irregularities. I recommend that every transplant patient do the same. Glad you are being diligent. It can only help!

Fri, Mar 1 4:28pm · Anyone have tips on sun protection? in Transplants

EltaMD products are also available on Amazon, (higher prices, but if you have Prime, it might work out not to pay for shipping), Walmart, and other skin care websites. I am post heart transplant and now live in Arizona so this is super important. I've been using this product since my transplant two years ago.

Fri, Mar 1 4:15pm · Anyone have tips on sun protection? in Transplants

Here's their official website. My dermatologist recommended this. https://eltamd.com/skin-care/

Fri, Mar 1 2:33pm · Anyone have tips on sun protection? in Transplants

Hi Rosemary, I purchased my tinted eltaMD at my dermatologists office.