Research & Development

Beverly, thank you for backing the need for more patients to participate in research with your own experience. As they say, “Action speaks louder than words.”. We can all play a more active role in assisting with medical advancements.

Here is a link about this…[Read more]

@jenc and @beverly-duffield I keep an open mind when reading these studies as well. I have known people with high pressures than mentioned who have lived with PH for a long time. What I have found over the years is that PH patients share as many differences as they do similarities. For example, my son was considered a typical statistic because he…[Read more]

I like what Jen says. Pretty much spot on and yes, my doc says the same things and I read formal studies continually. I’ve been diagnosed for 6 years now and am doing better than I was when first diagnosed with Groups 1 and 2. Just in RVSP alone I started out at 41, then went down to 35, then 33 and at last ECHO I was at 23.8. I attribute this to…[Read more]

Yes, very emotional topic but something that is often discussed living with such a life-threatening disease like PH. My PH doctor often dismisses some of these studies as he says we are all individuals and our bodies react so different to therapy as well as other factors. But, I also have important things in place if something were to happen. It…[Read more]

As far as the contrast, I just have had to have tests without contrast. Although these didn’t offer the best images, it was better than just not having the tests, per my doctors. I know last year, they waited until my kidneys were at a certain level ( little improvement) and then allowed me to have the test. My CKD ranges from stage 3-4, I’m try…[Read more]

Jen,
What do they do about the sensitivity to the CT contrast? Is there something different that they use when they need to do a study with the dye or do they just avoid that altogether for you?

Too funny Brittany, I often say I’m like the ” energizer bunny” minus the energy lol

Yes, my veins are small and now full of scar tissue, I imagine that your son has this issue too, Colleen. I know with all Brittany has been through, it’s really hard on your veins.

Interesting about the contrast, I haven’t had issues with this but the last few…[Read more]

I get migraines really easily from infusions too. Something that always gave me an awful headache and migraine after is when I get a CT scan or MRI with contrast. For some reason I have an awful neurological reaction to the contrast. This is actually marked as an “allergy” for me so usually I get the IB benadryl before a scan so it helps (might…[Read more]

Brittany, when my son needs an infusion of any kind we have to go slow because of his veins and also because he just always seems super sensitive to whatever they are administering. He occasionally needs IVIG infusions and he has to be admitted for those so they can slowly give it to him over 18 hours. If they go faster he gets so sick, especially…[Read more]

I’m like a durable battery at this point haha! And you’re right about when the infusion rate is up too high. It is definitely noticeable ! They have to run a lot of medications slowly for me or else they risk the veins blowing. Happened to me a few times and I had an infiltrated IV. Especially IV benadryl or it is quite the head rush if they put…[Read more]

LOL Colleen, no the iron infusions do not make you (or me) nauseated or constipated as I know the oral iron can do often.

Who knows what came first? We may never know, just do what we have to do and move along, lol

Wow, Brittany! that’s definitely is amazing news! Our bodies never seem to amaze me! They tend to be so durable!

Ohh yes, those iron infusions can burn. Usually if they have the infusion rate too high. I had one nurse who did that to me at my last one in December. Ouuchhh…I let her know quickly, lol

Wow Brittany, that’s great! The body is truly an amazing machine!

Hey all,
Surprisingly even with such low amount of nutrition the last 6 months, my body has adjusted and a lot of my nutrient levels and my blood counts are surprisingly okay and in normal range. It’s so shocking to me how much the body tries to adapt and “level out” even when you don’t think you’re giving it enough especially when there is lack…[Read more]

Jen, now that you mention it I vaguely remember my son having an iron infusion before but I can’t recall if it was pre or post transplant. I would say anemia is probably hereditary for him as well since I have always struggled with it. I struggles bad with anemia when pregnant with him…good grief…could that be a connection? Who knows!

How…[Read more]

Thanks, Colleen! This is a very interesting and informative article. I do have low iron ( iron deficiency anemia). I have to get iron infusions as my body wasn’t absorbing the real iron pills.

I have a Hematologist on my care team and have for several years. I just completed my last series of iron infusions on New Year’s Eve. My appointment last…[Read more]

I think getting a proper diagnosis and getting diagnosed early is absolutely crucial. I am so thankful or the advances in research and medicine like this to hopefully help others get diagnosed sooner rather than later ! I have never heard of this test but I know that breathing tests were the driving force behind me getting a proper diagnosis and…[Read more]