viviane-salzman
Forum Replies Created
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😮 I am so sorry you had to go through this. I hope it never happens again. It is difficult having a disease that many people – especially caregivers – don’t quite understand. Hopefully, in time, with education our care delivery will be better.
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😮 I am so sorry you had to go through this. I hope it never happens again. It is difficult having a disease that many people – especially caregivers – don’t quite understand. Hopefully, in time, with education our care delivery will be better.
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Personally, I like to have someone with me, encouraging me, showing understanding – although only someone with sickle cell can truly understand. Also, when in hospital, I can be reluctant asking for pain meds – you guys know what they think about us – so carers can encourage and advocate that we get the necessary med dosages.
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Bonjour Michael! Comment ça va? Pourquoi le Français?
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Hi Tito,
I had to switch hematologist because I had a fallout with the nurse practitioner who was working with that doctor. I got along really well with the two of them until I was asked to be part of a study and declined. The NP did not take it well. She was upset with me for saying no, and I felt like I was not being treated the same way. It is unfortunate because this should have never happened. Anyway it is a long story. It is very sad but I now have a new team and the hematologist is super nice and knowledgeable. I do miss my previous team sometimes but I had to do what best for me.
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I like this topic.
Well, I am currently 52 years old. Retirement had never really crossed my mind. My plan was to keep on working until I could not. Being able to have a career is good for our wellbeing. It is fulfilling and rewarding. Unfortunately, sickle forced me to quit my job right before COVID. I have been in the hospital with pain or fatigue, and I have been needing to be transfused a lot more often. I am grateful that my husband is able to support our family. It is bittersweet. While I miss having a career, seeing my patients, hanging out with coworkers, I have more time to spend with my family, and I do not have to push myself so hard to get out of bed to go to work. Maybe I will be able to return to the workforce some day but for now, I am taking care of myself by eating well, exercising, tending to my spiritual health, getting closer to God. I am happy.
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Good for you Mrs Norris.
I have inquired multiple times about being on a scheduled blood exchange, unfortunately my doctors won’t budge😩Do you mind me asking where you get your blood exchange? -
I have been getting transfused more often lately. Unfortunately, here in the US Drs are not doing exchange transfusions unless it is absolutely necessary. My hematologist explained that too much blood is needed for an exchange. Yes, my ferritin levels have been running pretty high (800). So I have been prescribed Deferasirox twice daily. It has been working a bit.
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Maryam,
It is always a pleasure to help in any way possible. I totally understand your worries and concerns, they are justified. Having a child with sickle cell can be very challenging, even scary at times. Remember however, that your worries are not going to change the situation. On the contrary, the stress will cause damage to your body and soul. I know it is hard but try to be strong and do exactly what you are doing right now – advocate, ask questions, educate yourself about this terrible disease.
Honestly, I think that you are being way too hard on yourself. No matter what decision you take for your son , he will understand later. He knows that you love him and that you want what is best for him. You did not bring your son to this, God did. He gave him life and He will provide. I have been living with sickle cell for 51 years and not once I have blamed my parents. I am grateful for this life. I attend a sickle cell support group every month, and this subject was discussed a few months ago. None of the sickle cell sufferers ever reproached their parents for bringing them into this world. They all are happy to be alive.
My mom is 82 years old and I am the one helping her out with her daily living activities, doctor’s appointments, advocating for her because that is what she had done for me all my life. Hopefully one day your son will do the same for you. All he needs from you right now is to love him and advocate for him as best as you can. My advice is not to treat him like he is different from any other healthy kids. Sure he has some limitations but he is not less than. I am grateful that my parents pushed me to become who I am today. They taught me that I could do or become whatever I set my mind to.
One more thing, while you are taking care of your son, it is imperative that you practice self care. Do activities that you enjoy, eat a balance diet, follow up with your doctors’ appointments. If you are not mentally and physically healthy, you will not be able to be there for your son. I will keep you in my prayers.
Take care.
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I have been on Hydrea for over 20 years now. The drug somewhat surely improves my quality of life. A friend of mine has been on it since she was a teenager, she is 48 now and she is well. I, however know patients who cannot tolerate the drug. So there’s no way to know who’s going to do well or not taking it. I would trust God and the doctor. Good luck to you. I will keep you in prayer and please keep us posted.
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<p style=”text-align: center;”>Nice! Maybe Lebanon will be my next vacation spot! Thank you!</p>
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I am glad you were able to have a nice time in your country. I know Lebanon is going through a real tough time presently but at least you can still go there and have a good time. Like you, I used to vacation in my country and recharged but nowadays it’s impossible because the political situation is really bad. All you hear about are kidnappings, murders, etc😩 I have to improvise on what I should do or where I should go to treat myself.
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One thing that would elevate my experience when hospitalized is being on a unit that is specialized in sickle cell. Hospitals have cancer unit, neurology unit, GI unit, ortho unit to name a few. On these units, doctors, nurses and others are specialized in their field. Patients are treated with dignity and respect and the care is tailored for success.
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Thanks Tito! I agree. Be safe.
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Hi guys! It’s been a minute since I’ve checked in. Unfortunately, I caught COVID last May. I was in the hospital for five days. I had a fever, was bringing up phlegm, was fatigued and had some pain. I received Remdesivir infusion, had to be transfused, had pain meds and IV hydration. I am fully recovered but you know, I feel like I have sickle cell every day. Low energy and mild pain here and there. I am keeping myself hydrated and eating healthy. I hope everyone is having a great summer.
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Wow Valerie! That is amazing! So many accomplishments. Very proud of you. Do you have SS? I assume that you do not get sick too often and that is a blessing.
I am 51 years old. Like you, I enjoy traveling. I am originally from Haiti but live in the US. I reside in Massachusetts and I have visited many of the states. I have been to Asia (Hong Kong) before the craziness, I have been to France a few times, I visited London and would like to return some day. I have been to Canada several times. I visited Jamaica, Barbados, Costarica. I have not been able to travel ever since COVID hit.
I am an RN (BSN) and worked at different settings – hospitals, nursing homes, rehab, home care etc.
My husband & I have four adopted daughters age 14, 12, 11 & 10.
I am a Christian and that is my greatest accomplishment of all.
Stay blessed!
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Hello all,
My Covid rapid test and PCR both came back negative. I praise God for that. Doctor thinks that I have allergies. I am feeling lot better. How is everyone doing?
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I have not had COVID but I currently have a bad sore throat, and I am feeling unwell. I will get a Covid test tomorrow. Will keep you posted.
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My parents were unaware of being carriers. They found out only after I started getting sick.
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Yes, I have two cats, and yes, they can be very therapeutic.
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Hi guys,
I have some issues with my ears as well. My hearing is declining and I have been prescribed hearing aids. I never asked my doctor if it is related to sickle cell😩Good luck Tito. Please keep us posted.
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Well, do you mean if I did not have sickle cell?
Anyway, I live in Massachusetts and I have a good team helping to manage my sickle cell. If I was a healthy person I would probably live in a warmer climate. Maybe Hawaii, or San Diego or some very nice city in Florida. You?
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I will be praying for you Tito. God is an awesome God. If He does not give you a partner, He Himself will take better care of you, as long as you trust Him. “He will supply all your needs according to His riches…”
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Thank you so much Micheal.