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  • mrs-norris-mulligan

    Member
    December 25, 2022 at 2:04 am in reply to: Working through a sickle cell crisis

    @michael quadri 

    I have not found an appreciation of ‘working’ through a pain crisis. I have always addressed the pain and got it under control because of the  seriousness of a pain crisis. I know that all of us are different and respond to a pain crisis differently but I have never advised someone to wait and not seek aid/medication. I believe that until the crisis has ended, work/activities should cease and medical attention should be initiated. I credit my older age to that philosophy and the grace of God. (and not in that order) Amen!

  • mrs-norris-mulligan

    Member
    December 25, 2022 at 1:55 am in reply to: Carers Support During a Sickle Cell Crisis

    @viviane141 @Tito

    My adult son appears to completely understand how I care for myself at all times when I am pain free. He reminds me to stay hydrated or to stay warm or don’t go there because there are too many people (because of the spread of Covid). I am thankful that I have not had a pain crisis in a while now because of Apheresis. But I have had to be a very strong self-advocate towards the RNs who do not want to follow my hematologist’s recommendations. That has been a first for me in that setting. I have experienced the need to be strong will in the emergency department when I’ve gone there to end a pain crisis. Sometimes there is a lack of urgency to stop the pain. A pain crisis is life threatening in addition to the unbearable pain and suffering.

  • @viviane141 ~
    I do agree that in the US there is not progressive treatment for SCD. I have experienced that. I actually go out of state to get exchanges. I do not have a hematologist in my state. Self advocacy goes a long way for getting more than adequate care. My Ferritin levels have had a continuous drop for months, so I’ve started a regimen of Iron.

  • @viviane141 ~
    I do agree that in the US there is not progressive treatment for SCD. I have experienced that. I actually go out of state to get exchanges. I do not have a hematologist in my state. Self advocacy goes a long way for getting more than adequate care. My Ferritin levels have had a continuous drop for months, so I’ve started a regimen of Iron.

  • Tito, I get red blood cell exchanges every 4 weeks currently since February 2022. The exchanges were started to prevent the expansion of a stroke.

  • mrs-norris-mulligan

    Member
    October 11, 2022 at 9:50 pm in reply to: Will You Keep Masking?

    I am continuing to wear a mask. I also ask healthcare professionals who are caring for me during my appointments to wear a mask. I make plans based on the number of people who may be present at an event before I decide to attend. I use the home test when a few friends/relatives will be together.

    I have received my Flu shot for this season. I am in the process of getting the vaccine for the Omicron variant.

    Hope all will stay well this fall and winter.

  • mrs-norris-mulligan

    Member
    July 20, 2022 at 2:24 pm in reply to: Sickle cell and the risk of stroke

    Hello Tito,

    I have the port for 5 months. It was designed for Apheresis. There has not been any complications. I am careful with touching the area. Use Dial soap to aid with bacteria.

    What about you?

  • mrs-norris-mulligan

    Member
    July 20, 2022 at 2:24 pm in reply to: Sickle cell and the risk of stroke

    Hello Tito,

    I have the port for 5 months. It was designed for Apheresis. There has not been any complications. I am careful with touching the area. Use Dial soap to aid with bacteria.

    What about you?

  • mrs-norris-mulligan

    Member
    July 14, 2022 at 1:54 pm in reply to: Sickle cell and the risk of stroke

    Hello

    I did experience a TIA in January 2022. It was very mild and resolved within minutes. At that time, my doctor recommended Apheresis every 4 weeks to decrease the risk of a stroke, on a larger scale. So I have a port now and get new red blood cells every 4 weeks.

  • 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

  • mrs-norris-mulligan

    Member
    March 16, 2021 at 10:30 am in reply to: Equipment to help manage sickle cell

    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 of breath (even when 02 stats are WNL). My physician ordered a C-pap device recently and I am using it at night also with my oxygen concentrator. I recommend bringing these ideas to your physician’s attention to assist in starting a regimen for sustaining pain free times. The recent storms (changes in atmospheric pressures) have affected me with a low grade pain crisis since February 9, 2021. My physician also increased the Hydroxyurea an additional 500mg for me.
    Also, I had my second dose of Moderna, March 14. I am doing well (for a soon to be 68y). I thank my Lord and Savior!
    Thanks for asking Tito!!

  • mrs-norris-mulligan

    Member
    February 22, 2021 at 8:42 am in reply to: Have you had the Covid-19 vaccine?

    @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 to cancel and reschedule appointments. Therefore, I began searching and stop being so particular about being near a hospital for the vaccine.Praying for all!

  • mrs-norris-mulligan

    Member
    February 21, 2021 at 6:31 pm in reply to: Resume Shielding

    @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 first dose. I pray each of you can get the vaccine ASAP. But remember to ‘shield’!

  • mrs-norris-mulligan

    Member
    January 26, 2021 at 5:50 pm in reply to: Do you trust the medical professionals you encounter?

    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 ordered and the department came to get me prior to the nurse administering the pain meds. The IV had been placed, I decline to leave the room and the nurse provided my care and then I receive the x-ray. Just advocate for your needs. (One time the covering nurse for me wanted to see what I looked like (my age) and said I was a unicorn and left without treating me.) Unbelievable! And last, I have recognized that more and more emergency physicians want to discharge SCD patients without getting the pain under control and do not offer a prescription for pain meds due to their protocol. Also, physicians now are not trying to identify why the pain crisis occurred. That helps us to do better with our care. Advocate for yourselves! 🙂

  • mrs-norris-mulligan

    Member
    January 26, 2021 at 5:36 pm in reply to: Why I Will Be Getting the COVID-19 Vaccine

    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.

  • mrs-norris-mulligan

    Member
    January 22, 2021 at 2:54 pm in reply to: Resume Shielding

    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 still wipe down my purchases with Clorox wipes.I wash my hands immediately when I arrive home, 20 seconds.

    Regarding the vaccine, I believe, comorbidity must be considered when SCD individuals are deciding whether to take the vaccine or not. I believe, in a medical setting, is a must for me (rather than drive-thru or drug store). Since I am 67y, and SCD is progressive, I do not need to take risks lightly.

    Favorable habits for individuals with SCD maybe more acceptable for me due to age. IDK. I like drinking water; I dress warmer (over dress) in the colder temperatures; I eat healthier foods but I love sweets!

    Remember we are individuals first who have SCD and go from there. God Bless!

  • 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 works for one is not necessarily what will work for all. I was told that I should be pain free. However, several years ago, a physician, during a group discussion said that may not be what all should. I cannot imagine why not! (a SC pain crisis is life threatening, that is why we use the emergency department to manage the pain and STOP the pain)

  • 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 course, have other distant cousins with the disease. But none of my first cousins have children with the disease, just the trait.

  • mrs-norris-mulligan

    Member
    November 10, 2020 at 2:18 pm in reply to: What is your favourite drink?

    LOL I do drink a lot of water daily. I enjoy Country Time Lemonade when I not drinking water. I do not drink sodas. I have tea occasionally and I do drink coffee with breakfast some mornings.

  • mrs-norris-mulligan

    Member
    November 5, 2020 at 2:48 pm in reply to: Explaining sickle cell to someone new?

    Michael, I just say that Sickle Cell Disease is a blood disorder that I was born with and that it causes severe pain. I share the what causes the pain.

  • mrs-norris-mulligan

    Member
    November 5, 2020 at 2:22 pm in reply to: Medical Oxygen

    Hi,

    I do use oxygen when I fly. My first flight with oxygen was from SC to CA. It was a good trip. When I flew a few years before that trip, Sickle Cell Pain hit me hard in my head as the plane began to descend. It was very painful, took pain pills, back to back to help me. Fear of stroke. Pain went away shortly after landing. There is always a problem for me on descent. However, I do use the oxygen on board for the entire trip. I will not fly without oxygen!!

    Last year, pain crisis initiated more frequently so I started using the oxygen at night while I slept.

  • @tito-oye We need more people of color to donate blood. My church is having a blood drive December 14. People signed up last Saturday. A mom of a son with SCD works with the American Red Cross and was coordinating the drive.

  • mrs-norris-mulligan

    Member
    September 3, 2022 at 8:03 pm in reply to: Starting HYdroxyurea

    @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 what I understand. Hope this helps you to understand what the doctor wants for your SCD Warrior. There is a huge age difference.

  • mrs-norris-mulligan

    Member
    March 10, 2021 at 8:51 am in reply to: Equipment to help manage sickle cell

    #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 that will cover equipment, please share that info.. Thanks

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