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Mrs. Norris-Mulligan and
Tito Oye are now friends 2 weeks, 4 days ago
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Mrs. Norris-Mulligan changed their profile picture 1 year ago
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Ethan Clement and
Mrs. Norris-Mulligan are now friends 1 year ago
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Mrs. Norris-Mulligan replied to the topic What does a typical appointment day look like for you? in the forum Diagnosis Information and General Questions 1 year, 3 months ago
Tito,
My appointments are not that lengthy. Maybe 30 minutes. I am not asked for an urine sample. I do get blood labs before I go since I take Hydroxyurea for SCD to build red blood cells. I tell my nurse what my weight is on the scale I use at home. Prescriptions are updated at least each 6 months.
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Mrs. Norris-Mulligan posted a new activity comment 1 year, 4 months ago
Hi Teresa,
I have had both doses of the Moderna vaccine. After the second dose, I was sleepy for a couple of days, there were no reactions for me. It is my understanding that due to comorbidity, having the vaccine is better if you contract the virus with having sickle cell disease. My physician recommended to me to get the vaccine,…[Read more] -
Mrs. Norris-Mulligan posted a new activity comment 1 year, 4 months ago
Ethan,
I understand. Some physicians are not familiar or do not have the facility capabilities for this option. I would be curious about the information that the physician shares with you when you ask and the rationale for their position. There are more options now for young people than earlier when I was growing up. -
Mrs. Norris-Mulligan posted a new activity comment 1 year, 4 months ago
Ethan,
Has your teenager’s hematologist discussed Apheresis with you and your wife regarding SCD? If not, ask about this… Hope the warmer weather brings relief.-
I don’t think that has been discussed yet. Routine blood transfusions were started before covid but had to be put on hold because of increased risk. We haven’t resumed routine transfusions and he has been on a new medication Oxbryta which also may be helping his overall well-being.
Ethan-
Ethan,
I understand. Some physicians are not familiar or do not have the facility capabilities for this option. I would be curious about the information that the physician shares with you when you ask and the rationale for their position. There are more options now for young people than earlier when I was growing up.
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Mrs. Norris-Mulligan replied to the topic Equipment to help manage sickle cell in the forum Adults With Sickle Cell Disease 1 year, 5 months ago
I have a great appreciation for the oxygen concentrator, especially when I fly. A pain crisis begins as the aircraft starts to descend and the oxygen helps me a lot. I started using the oxygen in the evening/night as I slept to bring me out of a crisis. It has to do with the level of oxygen saturation in my lungs and aids in decreasing shortness…[Read more]
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Mrs. Norris-Mulligan replied to the topic Equipment to help manage sickle cell in the forum Adults With Sickle Cell Disease 1 year, 5 months ago
#tracey ~ I have an oxygen concentrator also. My physician just ordered C-Pap, too. Different day…has nothing to do with SCD, I don’t think. I do use the oxygen when I fly, and had started using it at home too.
Tito, purchased the concentrator out of pocket, very pricey, in my opinion. Repairs are pricey, too.
If anyone knows about insurance…[Read more] -
Mrs. Norris-Mulligan replied to the topic Have you had the Covid-19 vaccine? in the forum Coronavirus (COVID-19) and Sickle-Cell Anemia 1 year, 5 months ago
@michael-quadri
I received the Moderna vaccine on February 14. Here individuals can be vaccinated 65y and older… I was very relieved, like a burden lifted. I was not sure initially about getting the vaccine, but comorbidity would be life threatening. Hopefully, all will be vaccinated expeditiously. My state did not receive 8,000 doses and had…[Read more] -
Mrs. Norris-Mulligan replied to the topic Resume Shielding in the forum Coronavirus (COVID-19) and Sickle-Cell Anemia 1 year, 5 months ago
@tito-oye, I had the vaccine on February 14. Whew! So I wanted to share since I did not follow my own advice, LOL. I went to Walmart since the vaccine was there prior to my scheduled date in March. It was Moderna. I did not have any side effects or symptoms. My arm felt like I got a shot, no different from a Flu shot. I felt so relieved to get the…[Read more]
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Mrs. Norris-Mulligan changed their profile picture 1 year, 6 months ago
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Mrs. Norris-Mulligan changed their profile picture 1 year, 6 months ago
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Mrs. Norris-Mulligan replied to the topic Do you trust the medical professionals you encounter? in the forum Adults With Sickle Cell Disease 1 year, 6 months ago
In my opinion, more medical staff can be favorable, however, I have had a few undesirable encounters. I listen to the details when the plan of care is explained to me when I am in the emergency department. If I know that a different approach has been favorable for me, I say so. (remember you are paying the doctor/nurse) For example, an x-ray was…[Read more]
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Mrs. Norris-Mulligan replied to the topic Why I Will Be Getting the COVID-19 Vaccine in the forum Adults With Sickle Cell Disease 1 year, 6 months ago
Tito, I agree about getting the vaccine due to comorbidity. I am scheduled now for my first and second doses. I am a healthcare provider so I fall into the phase 1a category.
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Mrs. Norris-Mulligan posted a new activity comment 1 year, 6 months ago
Ethan,
I believe food high in protein is favorable, like beans and vegetables from the soil like potatoes, sweet potatoes, turnips and leafy green vegetables. Look up diets in Africa. SCD is not a “problem” their and their diet is different from the USA. Staying hydrated and relaxation are wonderful choices. Teenagers probably enjoy downtime…[Read more]-
Thank you for your input. He does like fresh spinach salad but not cooked spinach! It’s a learning experience. The right amount of physical activity/recreation is good. Too much is clearly bad but not entirely predictable especially as he Loves sports! Thankfully the warmer weather is arriving which also factors in. He is a blessing as…
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Mrs. Norris-Mulligan replied to the topic Resume Shielding in the forum Coronavirus (COVID-19) and Sickle-Cell Anemia 1 year, 6 months ago
Tito, I have been shielding for almost a year now. I go to the grocery store doubled masked and only during senior hour. I walk the other direction if someone sneezes or coughs, don’t walk down busy aisles or do self-checkout if it is busy.I follow all of the protocols that have been recommended. I use hand sanitizer before I enter my vehicle. I…[Read more]
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Mrs. Norris-Mulligan posted a new activity comment 1 year, 8 months ago
Andrew,
I agree with your assessment. Both of my children have a trait because I have SCD. It was my son’s senior year in college and when he flew back to the mountains from our city which is below sea level that he experienced pain in his head that sent him to the college health care facility (a place he would never go unless absolutely…[Read more] -
Mrs. Norris-Mulligan replied to the topic When a crisis starts, how long do you wait before you start using medicine? in the forum Adults With Sickle Cell Disease 1 year, 8 months ago
Hello,
I am older, so now at the first feeling of pain, I use the meds, very very low dose. Usually, that stops the pain immediately (within the hour). I do follow a ritual, drink plenty of water and dress very well (over dress) for the cooler/cold temps.
I have recognized that a pain crisis affects each individual differently. Therefore, what…[Read more]
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Mrs. Norris-Mulligan replied to the topic Are you the only one in your immediate family with sickle cell? in the forum Sickle Cell Disease Awareness 1 year, 8 months ago
So I am, at this time, an ‘only child’. I had a sister that was born 5 years before me and died at 3 weeks. (I assumed she had SCD.) Both of my children have a trait. I had a second cousin who died in January 2020 at the age of 31, her brother who is 15 years older does not have a trait. I believe family education is very important! I, of cou…[Read more]
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