Dana Currie & Crono S-PID 50
My name is Dana and I have spent 20 of my 35 years of life managing a complicated genetic Primary Immunodeficiency (PI) with autoimmune complications. After 17 years of IVIG every two weeks, I switched to SCIG in 2010. My life improved dramatically. However, due to my high dosage, frequency, rural area of Maine where I reside and my desire to continue as much of an active lifestyle as possible with my family, the initial pump and tubing/needle sets I was prescribed for infusion proved to be inefficient. Never one to “settle”, I sought an optimal specific-to-my-life infusion set. I feel as though I have “struck Gold” with the Crono S-PID 50 pump and the neria™soft needle-less tubing set. I infuse nearly constantly and must do so cautiously with control, due to prior reactions, small frame and high-dose of IgG. These two products have helped improve my quality of life and helped to literally double my IgG levels. I am able to discreetly infuse via the Crono S-PID 50 confidently, unassisted, while enjoying the painless and easy to use neria™soft infusion set. An eternal optimist, I now have hope for a much more active life with my family. Thank you!
WOW! Life is good!
Gwen Brown & Crono Five
I have been living with PH for over 30 years, I have been living with PH for over 30 years, when i was told what i had there was nothing out there for ph patients but now we have so much to chose from.
I am glad that they made the Crono Five Pump, I am in love with it! I have been on the pump for over six years, when i saw it at the conference I ran home and told my doctor that he had to put me on crono five pump.
Ever since, I have been on this pump and it has made living with Ph a little easlier. It is so easy to use and now i can wear all the outfits that i couldn’t wear when I had that other big pump. The crono pump is so small that I can hide it anywhere, and it is so easy to program that i can do it in the dark.
It is so simple to use that I forget that I have it on untill it starts beeping, then I look at my family asking them “what is that noise, who’s beeping?” then they look at my and say “Mom it’s you beeping” and we just burst out laughing,
thank you for simplifying my life!
American family & Insuflon
“The insuflon™ device works extremely well for our 5 year old son who was diagnosed with Type 1 diabetes in March 2004. He is still in the “honeymoon” period and only requires about 5 units of insulin per day. All of his injections are given through the insuflon™ and he never complains of pain during the injections. We are able to mix different kinds of insulin together in the insuflon™ with no apparent problem. He currently takes Lantus, NPH and humalog.
Technically speaking, the insuflon™ is an indwelling subcutaneous catheter. We were introduced to this idea by Dr. Peter Chase and his team during our first visit to the Barbara Davis Center. The insuflon™ has a very low profile and my son usually does not even remember which side of his buttocks to expose when we ask him to take an injection. He can shower, bathe and even swim with it in. Occasionally, the sticky tape has frayed at the edges and we have reinforced it with Tegaderm with good success. We usually change the insuflon™ once a week and apply EMLA topical anesthetic cream for one hour, under a band-aid, before insertion. Most of the time, he does not feel the catheter going in at all.
While not for everyone, the insuflon™ has been wonderful for our son. If he wants to eat a little extra snack we can simply “cover it” with short acting insulin to keep him in tight control. My son’s other caregivers (babysitters and grandparents) are especially thankful since they no longer feel intimidated when faced with giving him an injection. Also, the insuflon™ may be a low cost alternative for those people who cannot afford to start the pump. The insuflon™ has helped to make our preschooler’s life as close to normal as possible.”
I am 24 year old and from Germany and I do have thalassaemia major. I get 3 units of RBC every three weeks. I use my pump 5 times a week over a 15-20 hour period. Yes, I even go to work or out with it! The purpose is that Desferal is more effective when used over many hours (the longer, the better!) Also, I mix my 3g with 20ml of water and the injection site does not get sore at all and almost no bumps!!!
Another thing that helped me a great deal is using the thalaset™ (“thumbset”) needle. It is very comfortable, because it goes straight into your skin and does not waggle around, so that the tissue at the injection site does not get injured and irritated.
Additonally, I got myself a new pump called “Microjet Crono”. It is the smallest pump you can imagine and it weighs only 110g! You can fit it in you pocket easily and you can participate in everyday life without any problems. My ferritin is always between 700-1000 and since using this “strategy” (20ml mixture, more hours, new pump + thalaset™), I feel excellent and pumping is no problem for me at all!
If you want to know more about all this, please do not hesitate to contact me and I will be happy to help you!
I’m 23y/o from Australia who has very recently had my spleen removed (I was told it was 8-9 times larger than a normal spleen). My blood transfusion requirement is expected to stretch from 3 units every 3 weeks, to every 4 weeks. I did have some trouble using my Desferal regularly mainly because of the sore pump sites and the awkwardness of the butterfly needles.
I was recently told about the thalaset™ which is a 90 degree needle and have begun using 3g of Desferal at least 5-6 nights per week. This needle is far more comfortable than the butterfly needle. Instead of inserting the needle and having to bend it down to tape it, this needle goes straight in and has an adhesive base which sticks to your skin.
To anyone having trouble with using butterfly needles I strongly recommend you try these thalasets, you will not want to go back to butterfly needles. I feel I have much more freedom to wear the pump at night or even during the day! It sits flat against your skin (unlike the butterfly which sticks up slightly from being bent) so you can hide it easily and it does not get caught on clothing. I also find it leaves less swelling than after use of a butterfly needle.
At this site I have read about of many different variations on using Desferal, a lot of which I have not heard before, but I have not heard anyone mention the use of the thalaset™. If anyone has used it or has any questions for me, I would be interested in hearing from you, so please feel free to email me.
Phil Nunez & tubeguard™
Phil Nunez is one of our dedicated users of the tubeguard™.
Read here to find out why :
“Thank you so much for sending me the samples of tubeguard™. I gave some to my Diabetes Educator, Jeannie Smith, who was ecstatic to receive them. She agrees with me that every pump usershould have at least one tubeguard™.
I’m going to give some to my older sister who has been on a pump for over 10 years. She is on her third pump, and she didn’t know there was such a thing as a tubeguard™. She is a public health nurse who works with handicapped children, and especially with her work the tubeguard™ is very helpful, as it prevents the children to pull or accidentally get caught in her tubing.
My brother-in-law was pleased to hear about tubeguard™ too, because he has had to help my sister untangle many a tube line.
It would be fantastic if tubeguard™ was available here in the United States. The next time I go to a pump class, I will take tubeguard™ with me and show it to the other participants in the class. I guarantee you none of the tubeguard™ you gave me will go to waste!
I have never experienced a tube line plugging up, kinking up, or pulling out since I have been using tubeguard™.
Again, I am very pleased to have tried tubeguard™. I have been a Type 1 Diabetic for 58 years and I have been on an insulin pump for about 3 years.”
Sincerely, Phil Nunez