Second opinion

[Brittany Foster]

Hi Lori,
I get my care in Boston at Brigham and Womens and they are a combined heart and pulmonary program (which I think it is good to have combination of specialists because PH effects so many parts of the body). I try to keep my specialty care all at the same hospital and I trust that Boston hospitals are the top care. I know a lot of people who go to Boston for a second opinion especially because they so transplants here too. I would recommend a hospital that does transplants and have PH specialists along with a top cardiac program. I have heard that Cleveland Clinic is great too! I’m fortunate to live only an hour from Boston so I’ve been getting my care here since birth for other very rare medical conditions too.

[Lisa]

Lori,

I went to Mayo Jacksonville for my second/third opinion. Mayo is a PHCC and is fantastic. Hard to say enough positive things. I also have a PH expert here in Atlanta, Dr Chad Miller at Piedmont, who is also terrific (and it turned out correct dx) but they aren’t a PH Center. Glad to give you any info I can.

[Sherry Berry]

I had a second opinion. He suggested Emory Pulmonary clinic. I went the doctor didn’t even run any test and just because I’m over weight He said I probably just have an odoimmunine disorder, and needed to loose weight. Mind you I’ve been dealing with this for 10 years. Then I was referred to Duke University. Ended up in the hospital in ICU. Then the hospital two weeks. Came home did Pulmonary rehab. Ended up back in the Hospital at North East Georgia Medical in ICU again. Woke up now I was diagnosed with PH, CHF, AND PF. A

[Brittany Foster]

Sherry,
I’m so sorry that you are managing such difficult diagnoses (as if PH wasn’t enough to have to manage!) I hope that you are in good hands and have doctors who listen to you and take your conditions as serious as they are. I know there have been many that have similar experiences and doctors turning them away because of their weight or not getting proper treatment. Are you on a better treatment plan now ? I hope you’re not still in the hospital in the ICU and I hope you are more comfortable. I can understand your pain, it’s definitely not easy. (Hugs)

[Sherry Berry]

Along with Crptogenic Organizing Pneumonia, Pulmonary Hemorsidosis, and Cronic obstructive Asthma. I know there is not a cure. The closest support group is over an hour away. any suggestions for coping. I’m on high flow oxygen 8-10 ltrs 24/7, I don’t go out in crowds, because of germs.

[Brittany Foster]

Hi Sherry
I’m sorry that life has thrown all of this at you. Are you mostly home during the day? I would suggest starting to find things you can do around the house to keep you bust and maybe even a craft or something you can do and sell to others. I always find it easier to cope through my day when I’m still able to do SOMETHING even if that something looks different from what I originally thought. I like to write during the day and find it to be very therapeutic. I want to learn how to crochet and sew too and that’s something on my to do list. Since i have a of time on my hands during the day I figured I’d give it a try and I’m sure it can be a relaxing activity too. I love the fact that this is a place for support online. Have you researched if there are any online groups like Facebook groups through social media? Creating one could be a good idea too and maybe your doctors office can help spread the word for you

[Sanara]

I have used marijuana over 30 years with no health problems except some gum and tooth loss. After battling with alcohol since the age of 12, marijuana is a safer alternative, and greatly helps me from relapsing back to the misery caused by alcohol. Marijuana allows me to avoid prescription drugs and the addiction and death associated with them. Over 100,000 Americans die every year from prescription drugs while marijuana remains at 0. I currently take no prescription or OTC drugs. I cured my skin cancer with oils from marijuana. I’ve lost so many friends to alcohol and chemical drugs I’ve lost count. I don’t know anybody that died from using marijuana unless they were shot by the police for having some. Marijuana is illegal based on decades of lies from the government only to protect pharmaceutical, alcohol, tobacco and law enforcement revenue. The lies are being exposed and people are waking up that marijuana is a very safe, medically beneficial plant that should be available to everyone. I am very proud to be associated with this change and will fight for the truth until my feet hit the grave.
https://www.bonzaseeds.com/blog/clementine/

[Brittany Foster]

Sanara,
It sounds like this is a topic that means a lot to you persobally. I would be interested to see if others here have used THC products or CBD products and if they have talked with their doctor about this option for some of the symptom management. My own cardiologist brought this up to me as something to look into and it has been at the front of my mind. I will create a topic tomorrow or tonight and see who chimes into the discussion. And if you could share youe experience in that forum that would be great!

[Lori Novick]

Thank you ❤️!

[Lori Novick]

Thank you for the feedback. I will look into your suggestions. Does anyone know anything about National Jewish Health in Denver?

[Kathleen Sheffer]

I don’t have any personal experience with National Jewish, but I’ve read only good things from patients in Facebook groups who receive care there.

[Sherry Berry]

Thank y’all for all the feed back. My days are free. I see my Cardiologist on a regular basis more than my Pulmonary doctor. My primary doctor makes sure that i don’t have to wait in the waiting room. He always make sure I’m doing okay. To call if I need anything. They do all work together. I’m my Pulmonary doctors only patient with my lung diseases. I’m considered a rare patient. I haven’t meet anyone around my area that’s my age on oxygen. I refuse to let this beat me. Although I can’t work anymore, I love to read, cook, bake, cross stitch, and sew it just takes longer now. My furbabies are loving all the attention. I feel like my independence is gone. My 21 year old son goes with me everywhere,he helps me do almost everything around the house, when my husband’s working. I wouldn’t even consider marijuana because my husband is a recovering addict although I do have pain. I just take Tylenol the strongest thing in my home.

Again Thank you so much.

Sincerely,

Sherry Berry

[Kathleen Sheffer]

Sherry, I’m glad you have a great primary doctor who prioritizes you – I had a pediatrician who did the same for me and I was so sad when he retired. I’m 25 and I think it’s so sweet that your son helps you! It’s nice that you can have that closeness at an age where most young adults are spending less and less time with their parents. I underwent a heart-lung transplant at 23 and spent a lot of time with my parents while they cared for me for the first few months and it really helped our relationship long-term. Illness is no fun, but certainly makes you appreciate life and the people in it! I also stick to Tylenol for pain. 😉

[Brittany Foster]

Hi Sherry,
I’m so glad that you have a team of support around you. It seems like you have a very supportive home life and I know that can make a huge difference. I love to have the company of pets too during the day. I also enjoy many of the same hobbies and have wanted to learn how to crochet. I heard it can be very relaxing and it would also he something I could take with me to the hospital and occupy my time if I find myself admitted for a longer period of time. I have even seen people start their own etsy businesses! What are some of your favorite things to bake or cook? I love baking different kinds of cookies and having an assortment of them around the house or to take to peoples houses! I like baking with the kiddos that I nanny too. Keep up the positive spirit and keep staying busy! It helps a lot with managing this disease!