Mrs. Norris-Mulligan

@maryjawad: So I was taking Hydroxyurea, 500mg, 1000mg and then 1500mg. My new hematologist decided to start red blood cell exchanges. The medication was discontinued. I understand that it is used mostly for individuals with SS disease. I did not experience side effects that I know of. The medication helps the body to make red blood cells, from…[Read more]

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.
Elaine

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]

#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]

@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]

@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]

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]

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.

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]

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]