viviane salzman

😮 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.

😮 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.

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.

Bonjour Michael! Comment ça va? Pourquoi le Français?

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.  I…[Read more]

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…”

Thank you so much Micheal.

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…[Read more]

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…[Read more]

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…[Read more]

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. Goo…[Read more]

<p style=”text-align: center;”>Nice! Maybe Lebanon will be my next vacation spot! Thank you!</p>

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, m…[Read more]

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 s…[Read more]

Thanks Tito! I agree. Be safe.

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 sic…[Read more]

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…[Read more]

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?

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.