Narrator 

Welcome to the PDSA podcast Bruised but not Broken: Living with ITP. The diagnosis of a bleeding disorder like immune thrombocytopenia may leave you wondering, how can I really live my life with ITP? PDSA's podcast, Bruised but not Broken: Living with ITP, brings empowering stories, the latest research and treatment updates, lifestyle tips, and answers to the real-life questions the ITP community is asking. Here’s your host for this episode, Barbara Pruitt. 

Barbara Pruitt 
Welcome, and thanks for joining me today. I am Barbara Pruitt, your host and fellow ITP patient. Yes, as you may know, I was diagnosed at the age of four, and I've been  learning a lot about ITP along the way. So, I want to share some things with you. 
 
Today, I want to cover a couple of topics that might be pertinent to most people with ITP. The first topic is nosebleeds. And I also want to cover what I carry with me, or as I call it, my emergency kit. What do I take? And also, what do I take with me when I travel? 
 
This all came about a couple of years ago. I went to get a manicure. It was a nice day. I was feeling fine. I know my platelet count's low, so it's not as if I had any particular worries about me that day. As I was sitting there getting my manicure, the manicurist looked up at me and her eyes were wide and her mouth opened, and she was horrified. 
 
I realized I had a nosebleed. I had blood dripping down my face, and she got up very quickly, ran and got paper towels and tissues for me. This was not abnormal for me, but for a person that's not used to seeing that, I know she was horrified. Anyways, I washed the blood off my face, and I shoved a tissue up my nose, and it took several of them. 
 
However, I managed to get my manicure finished. I made it home with the tissue shoved up my nose. And by that time, it had stopped, but it got me thinking. What do I do for nosebleeds? Well, I'll tell you what I do. Unfortunately, everything I do for a nosebleed is at home. It's not with me. So, what I do for a nosebleed is when it happens, I get my Afrin nasal spray and it comes, you know, that's the brand name. I know it comes in a generic form, you know, each drugstore probably has their own brand of it, but it has a vasoconstrictor in it. 
 
And what is a vasoconstrictor? A vasoconstrictor is something that shrinks the blood vessels. And when the blood vessels shrink down, they're constricted, so they won't leak as much blood. Now, your nose is very vascular. The blood vessels in your nose are very, very close to the surface. So, they can dry out easily. That's the reason that they started to bleed. Who knows? 
 
But the Afrin helps. The other thing I do is I have something at home called nasalCEASE or BloodStop is another brand. And they have little packets of, they're like nasal pledgets that you shove up your nose when you have a nosebleed. And it helps to stop the bleeding. And they work really pretty well. Now, if you're someone that is bleeding profusely and this isn't helping, you need to get to the emergency room. 
 
My nosebleeds don't tend to be that severe when I get them, but I always have that nasal disease on hand. The other thing I have on hand is Tranexamic acid. Now, I know I've talked about this before, but Tranexamic acid, if you're not familiar with it, you need to talk to your hematologist about it because it's really something you should have on-hand. It is a prescription medication, and you take it when you get injured or when you're bleeding. And my understanding of it is that when your body is trying to form a blood clot. And of course, our bodies don't have as many platelets, so that clot is slower to form. But there's a whole cascade of events that happen to form this blood clot. 
 
And the normal cascade of events after the blood clot is formed what happens is that blood clot starts to break down. Now, what the Tranexamic acid does is; it slows down that breakdown and it gives you more time to have that clot in place. The longer the clot can be there, the better because there will be less bleeding. So, when I get a nosebleed, I will take a Tranexamic acid. And if it continues to bleed for 15, 20 more minutes, I'll take a second one. If you're not familiar with Tranexamic acid, like I said, talk to your hematologist about it and get some direction from him or her about how to take it and how frequently to take it and when to take it. 
 
Now, when you get a nosebleed, another thing that I do, I do not lay down because if you lie down, the blood could go back in your throat. You could choke on it. You would swallow it. You could vomit up the blood. 
 
You know, if you're having that much bleeding, you really need to think about going to the emergency room anyways. I don't tend to have a lot of that. I mean, my bleeding, if I get a nosebleed, I usually am able to stop it by using these three things. 
 
So, what I decided to do, is to get a small pouch or a Ziploc bag that I could carry these things with me. and I figure something I carry in my purse every day. 
 

And if you don't carry a purse, if you have a briefcase, a lunchbox, backpack, maybe ah a coat with big pockets in it, maybe even your glove compartment would be a good option for you. But to carry these things with you if you suffer for nosebleeds. But I started thinking then, this is great for a nosebleed, but what if something else happened to me? 
 
Barbara Pruitt 
What if there actually was an emergency? So, I decided to put a list together of things that I needed to carry with me just in case of an emergency. So, here's what I came up with. I have 13 different things that I carry with me. Number one is the Afrin, you know, or its generic brand, the one that is a vasoconstrictor. 
 
Number two is NasalCEASE, or another brand is called BloodStop for nosebleeds. These are both for nosebleeds, like I mentioned.  

The third thing is BloodStop makes a powder that is also in packets. And I've used it before. I've been somewhere where I've cut myself And, you know, not deep enough to need stitches, but, you know, if you just nick yourself slightly, I know I bleed. So, I've put the powder on it and it really has helped to stop the bleeding. 
 
Number four is Tranexamic acid. Like I explained to you.  

Number five, my insurance cards, my health insurance cards which is always a good thing to have with you in case of emergency. And you know, usually they're not easy to find. There's in a wallet that you don't know where it is, whatever. So, carry those with you or carry a copy of them with you. 
 
Number six, I have a PDSA ITP information card. And you can call the office and get one. What it is, it's like a trifold business card. And it says that you have ITP. And you put in it your emergency contact information as well as your doctor's number and information. And then you list all the medications that you take, which is really good to know in case of an emergency. They want to know what medications you're taking regularly. Just make sure you keep it up to date, you know, that information.  

So, number nine, I keep a copy of my recent lab work with me, specifically the CBC. I mean, if there's anything else that's really pertinent to you and your health issues, then I would keep those with me also. Also, keep those up to date. You don't want, you know, lab results from three years ago on you. You want something more current. 
 
So, number 10, I have a prescription from my doctor to get lab work done whenever I think it's needed. In other words, I can go get a CBC and a chemistry profile wherever I am whenever I feel like, oh no, I'm more symptomatic. I need to get this done right away. I can go into a laboratory and give them the prescription and they will draw the blood and get the results to my doctor or maybe they'll give them to me. 
   

Now make sure you have that on hand. And the other thing is make sure it's a current one because I've had them. I've had a prescription with me for years and years. 
 
But every year I need to have my doctor give me a new one because after one year, they're no good.  

Number 11, Band-Aids. That makes sense. You never know when you're going to nick yourself, cut yourself, bang yourself. You get to put a Band-Aid on it. I was looking in my emergency kit the other day, and I do have some Band-Aids in there, and I think they have Woody on them from Toy Story. That's the only Band-Aids I had in the house. Of course, they were gifts from my grandsons. But I do have Band-Aids in my kit.  

Number 12. Now, this pertains to me particularly. I get migraine headaches, and I also have allergies. So, I carry with me some of my migraine pills and also some allergy pills. So that's not something you need to do. But if you have another medical issue that you have medication for, you might want to carry some extra medication with you. 
 
And number 13, I put all of this in a Ziploc bag. And the reason I'm saying a Ziploc bag or its counterpart, whatever brand you want to use, is because If you were to hurt yourself, bump yourself, injure yourself in some way, 
 
You know that it's always best to get that part of your body elevated above your heart and put ice on it. And if you have a Ziploc bag handy, ice goes in there really great if you can find the ice, but it could come in handy. And I know for me, it has come in handy in the past. 
   

So, all of the above items, the 13 that I listed could be appropriate, you know, for ITP patients, whatever your platelet count is. 
   

And if you're putting together your own emergency kit, just tailor it to your needs. You may not get nosebleeds, so you wouldn't need the Afrin or the NasalCEASE. 
 
But if there are things that relate to you and your ITP and your needs, think about it; would it be a good idea to carry some of it with you on an everyday basis? 
 
Since my platelet count is below 10,000, my bleeding risk is higher. So, I carry all of this with me. I actually made a little pouch to put the Ziploc bag in and put a big red cross on the middle of it, and I put the words on it, Emergency Kit, and big letters across it so anyone would know if I needed it Now, I travel quite a bit, so I keep this in mind when I'm packing, that I make sure that I always bring my emergency kit with me. 
 
But I also take some other things with me, too. On a regular basis, I organize my medications in a weekly pill minder. 
 
It has Sunday, Monday, Tuesday, Wednesday; you know what they are. You can find them everywhere; these little pill minders. And when I travel, I make sure that I have enough medication for the amount of time that I'm going to be gone. 
 
However, in addition to that, I take an extra week's worth of medications with me. And the reason I do that, it has actually come in handy before, is just in case. Plans can change. Flights can be canceled. There might be bad weather. Your car could break down. You never know. Maybe you want to extend your trip. And if you don't have enough medication with you, you don't have that opportunity to do so. So, I always carry an extra week's worth of medications with me. 
   

Barbara Pruitt 
I'm one of those ITP patients that had splenectomy years ago when I was seven and it didn't work. But fortunately, things have changed. And now there's a lot of options. Back when I had my splenectomy, the only thing that you could do was get steroids, take steroids, or get a splenectomy. 
 
But nowadays, fortunately, there's a lot of options with treatment. So, people now with ITP are in a much better position than I was when I was diagnosed. But since I don't have a spleen, I have to think about, you know, if I was to get a high fever, it's something that could be very dangerous for a person without a spleen, having an infection of some sort. So as a result, I carry, when I travel, I carry antibiotics with me and a thermometer. 
 
I know that if I was to get a fever over a certain point, I need to go to the emergency room. Anyways, because I don't have a spleen and they have to do blood cultures and figure out where the fever is coming from, if there's an infection of some sort. So, it's something you can't mess around with. That's what I do because I don't have a spleen.  

And when I travel out of the country, I take some additional things with me. I take Dexamethasone and I take a Prednisone dose pack. Now, both of those are prescription and your doctor's not going to give those to you freely because neither one are things you want to take unless you absolutely have to. And I would I travel with them when I'm out of the country. And sometimes when I travel domestically, I'll take those with me also. But I never actually take those medications unless I check with my doctor first. 
 
So, talking to your doctor about traveling is a really good thing to do and talking to him or her about what you need to take with you just in case, making sure that you can always contact your doctor before initiating taking any of those medications. 
 
Bottom line is it's better to be prepared. Things happen in life. Accidents happen in life. You never know when that's going to be and If you were stuck in a place and you had nothing, none of these things with you, you're gonna have a lot more anxiety. And you could alleviate that if you carried few very important things with you all the time. 
 
So, I'm hoping that this helps you. But the reality is ITP is an inconvenience. So over time, we need to learn to live with it. It's a process. It doesn't happen overnight. In the meantime, love your life and enjoy your life. There's so much beauty out there in this world, I want you to go find it. Have a great day. Wishing you healthy platelets. Until next time. 
   

Narrator  

How do you live your life with a bleeding disorder like ITP? From working in the kitchen with knives, to navigating sharp corners in your house, going out to eat in a restaurant, traveling on a plane, attending a sporting event, even dancing at a wedding. ITP patient Barbara Pruitt shares her tips and tricks for moving through life with ITP for more than 60 years. Here's her lifestyle lesson for the day.  

Barbara Pruitt 
Well, now that I've told you what to do when you have a nosebleed, I guess I should let you know what you should do to try to prevent nosebleed.  

There's a couple of things you can do. First of all, let me explain what happens. Your blood vessels in your nose are very close to the surface. There's only a very thin layer of skin over your blood vessels. So, they are much more susceptible to bleeding or being injured. So, we really need to take care of those nasal passages. 
 
Now, a lot of the reasons that people could get a nosebleed is because those nasal passages dry out. and to combat that, you need to keep the nasal passages moist.  
You can get some saline solution in a little spray bottle at the drugstore and It's the same pH as what your body is. It's essentially sterilized water with a bit of sodium in it, which is similar to what the same pH your body has. So, when you use it, it's not going to hurt or sting, or it shouldn't. 
 
Anyway, the saline; you can use it in both sides of your nose, and you can use it as frequently as you need to keep those nasal passages nice and moist. 
 
An alternative to the saline spray, there is also available as saline gel, and you would put a little bit of it at the front of your nose and then sniff it up into your nasal passages there and that will have a longer effect on those areas than the saline spray would have.  

Now one other thing to consider is when your air is dry and that really promotes a drier atmosphere in your nose and sinuses. When you have the heater on in your home, if it's cold outside, your home could be very dry, and they have humidifiers. And humidifiers are great because they put moisture back into the air. So, if you have one of those in your home or you have one at your bedside for when you're sleeping at night, that will also help to keep those nasal passages nice and moist. And that can help to prevent a nosebleed.  

One other thing that I thought of is if you happen to have high blood pressure; high blood pressure and ITP are not a good combination. 
 
So, if you have high blood pressure, it's really, really important that you stay on your medication and have that monitored. Because sometimes when a person has high blood pressure, they have more nosebleeds because their blood pressure is high. So,  if that pertains to you, it is something that you need to consider.  

I also live in a very moist climate. The humidity is pretty high where I live. And when I travel to areas where the climate is much drier, I actually have a small portable humidifier that I use, especially at night when I'm sleeping. So, there are ways to help combat the nosebleeds. So, I hope that helps. That's my lifestyle tip for today. 
 
Narrator  

Thanks for listening to the PDSA podcast, Bruised but not Broken: Living with ITP. Made possible by our presenting sponsor, Amgen. Special thanks to Gus Mayorga for composing our theme music. To see what's coming up, visit our website at pdsa.org and subscribe wherever you get your podcasts. Please share this podcast through social media with anyone who you think might benefit from the information and stories we share with the ITP and other platelet disorders community. As always, please speak with a healthcare professional before making any treatment decisions but know that pdsa.org is a wealth of information and resources to help you navigate life with ITP and other platelet disorders. Remember, you are not alone.