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Permalink Reply by Lilly Debby on May 7, 2015 at 12:05pm

Thnks God Almighty. Pray to God for continued good health.

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Permalink Reply by Jennifer Quinones on May 7, 2015 at 5:25pm

My 9-year-old daughter received a port when she was 7. It is the best thing we could have done because all of her little veins were collapsing so badly Dr.s had to start accessing the veins in her feet and legs. One time even her jugular vein in her neck!  After doing extensive research I decided to get her a Double Vortex Port (One of the newest and most elite on the market). 

These ports are usually given to adults only, however I research a few children who were using it successfully in The Children's Hospital of Philadelphia. My reasoning for getting her this particular port is because I didn't want her to get blood transfusions anymore for the risk of Iron overload. That would have been more drugs she would need to take.

My daughter now undergoes Red Blood Cell Exchanges monthly and this has truly been a Godsend in our lives. The way the procedure works is on one port it removes her "sickled" blood cells and in the other port it replaces them with "healthy red donor cells." 

Because of the even "exchange" ratio there is no risk of iron overload. She went from having over 65% SS cells (risk for stroke) to now 8% SS cells. It's almost like being "sickle free" for a month and with continued maintenance this has seriously improved my daughter's quality of life. 

We went from frequent long hospital visits and stays. Continuous painful episodes that most of the time required morphine. We could not travel any time we did she would experience a crisis because of the altitude of the plane. She could not swim (very hard to tell a child this who loves the water). She was also scheduled to have her spleen removed because it was protruding. I begged the Dr. to just let me try this treatment.

By the grace of God her spleen is completely functioning and back to normal (I have to dig to find it). She is the most active, bright (Honor roll student) full of energy, swims whenever she can and we has already been to about 6 different countries since she began this treatment.

We have yet to experience a pain crisis since beginning red blood cell exchanges. We even went on a family trip on a Disney Cruise for 8 days with not one incident. I cannot stress this treatment enough even the little things have changed she is not jaundice anymore and the yellow of her eyes is a complete thing of the past.

There is absolutely no stopping my little girl. I urge you to please study this thoroughly before making a decision. Do what works best for you and if your going to get a port I highly recommend the Double Vortex and the consideration of undergoing Red Blood Cell Exchanges.

It will improve your quality of life immensely. Stay blessed and pain free!

Sincerely,

Jennifer Quinones 

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Permalink Reply by Lilly Debby on May 10, 2015 at 7:34am

Thank you Jennifer! That´s good information.

I´m grateful that i´ve got some more information of the port!

God bless you and your girl too!

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Permalink Reply by Remona Fox on May 8, 2015 at 10:19am

Yes I have one. I have a double access port which I use for red cell exchange every 8 weeks.
I have had 2 devices so far. I found that it takes some time for it to heal fully. My port is quite positional so can be troublesome to work when we are doing the exchange procedure but when it is working it works very well.
I think it helps as I don't have great access veins and it has enabled me to remain pretty healthy through a pregnancy and haven't needed hospitalization for quite some time.
The main thing is to have a knowledgable team access your port and keep to the sterile protocol to prevent infection. Do your research before making your decision so you can know if it will be a fit for you.

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Permalink Reply by Lilly Debby on May 10, 2015 at 7:40am

Thanks for the information!

Its always good to get more information from other people that's having the same problem.

God bless you!

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Permalink Reply by Jennifer Quinones on May 10, 2015 at 7:22pm

Thank you so much!

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Permalink Reply by Rosalyn Reese-McCallister on May 14, 2015 at 7:43pm

I had four in which all were infected then came the pic lines then those tissues in my arm were destroyed. now I have to rely on central lines in the neck and groin...fearing of when the last time they'll be able to use either places 

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Permalink Reply by Jennifer Quinones on May 14, 2015 at 7:49pm

I'm so sorry to hear that Rosalyn. Was it because of the hospital procedures? I can't believe you had so many issue's I am truly very sorry to hear that. 

My daughter use to get sedation and have a catheter put into her neck or groin vein to receive red blood cell transfusion. This became a bit much and why I ultimately decided on the Vortex. 

I wish you well and I will keep you in my prayers.

Sincerely,

Jenny

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Permalink Reply by Lilly Debby on May 15, 2015 at 9:52am

I'm sorry Rosalyn.
Only pray to God!

God bless you!

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