October 16, 2021

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Hemophilia 8 – Moving on

Relationships

I haven’t yet transitioned to St. Mike’s, but I will be in December. So really looking forward to it, also anxious at the same time. At the first visit parents will often come with their child.

I make it quite clear that that’s okay, and I will also make sure, I will ask you, as my patient, if you want your parents in the room with you, right at that very first visit. Often I will have the parents come in, even for a few minutes if you don’t want them to, just to explain the process. That from here moving forward, you are my patient, and it’s up to you how your healthcare proceeds at this point in time.

When I meet with people who are coming here and have to understand what the hardships there are in their life. It’s different from when they are going through the pediatric program where they have to be cautioned to be careful in sports and things like that. So a lot of the guys come, and their parents or mothers or father have assisted them with the infusion, or have reminded them when they’re due for infusion. What we want to know is what degree of independence they have and they plan to assume.

My worst fear is that he won’t be able to manage his condition. Maybe that I didn’t give him enough information. But you know in the back of your mind that you must have raised someone who knows what to do, they’ve made it this far, and everything‘s turned out okay.

If I have a question, like in terms of something that I had to treat, and see what they would have said about it, like post-treatment, I might ask them a question that I have, but I don’t go through any checklists or any preparation or anything.https://www.datingsitesreviews.com/forum/viewtopic.php?showtopic=5486 I would think it’s a good idea if you have a couple questions beforehand when you go in. If you ask, in a courteous way, and you feel you’re not getting an answer to your question, don’t hesitate to ask again, because you are the patient, and you are entitled to that information. There’s a lot of issues around just basic functions around things, around sex, which people have a hard time with, and people have a really hard time accepting that.

I mean, as people we care to think of ourselves all as sexual beings, and when that’s compromised, unfortunately, people think of themselves, more often than not, as being less than what they wish they could be. At 18, it seems like a good age. You understand the hemophilia, and your condition, enough to be able to go on your own, and to be able to go into the visits and understand what they’re talking to you about. I think any younger, it’d be difficult to understand the physician, and be able to talk to them appropriately.

But I think any older, you might begin to lose sight of your own independence, and be more dependent on your parents to do things for you. This is a perfect time, because this is 18, it’s a time when a lot of things change in their life. So it’s tough to let go, but I think that I’ve taught him what’s important. You know, how to make good decisions, and it’s his time now.

It’s his time to move on. I think I’ve heard other hemophiliacs, telling me how their wives or girlfriends have learned to treat. Is that an option, how does that work? Yeah, that’s definitely an option.

I haven’t yet transitioned to St. Mike’s, but I will be in December. So really looking forward to it, also anxious at the same time. At the first visit parents will often come with their child.

I make it quite clear that that’s okay, and I will also make sure, I will ask you, as my patient, if you want your parents in the room with you, right at that very first visit. Often I will have the parents come in, even for a few minutes if you don’t want them to, just to explain the process. That from here moving forward, you are my patient, and it’s up to you how your healthcare proceeds at this point in time.

Relationships

When I meet with people who are coming here and have to understand what the hardships there are in their life. It’s different from when they are going through the pediatric program where they have to be cautioned to be careful in sports and things like that. So a lot of the guys come, and their parents or mothers or father have assisted them with the infusion, or have reminded them when they’re due for infusion. What we want to know is what degree of independence they have and they plan to assume.

My worst fear is that he won’t be able to manage his condition. Maybe that I didn’t give him enough information. But you know in the back of your mind that you must have raised someone who knows what to do, they’ve made it this far, and everything’s turned out okay.

If I have a question, like in terms of something that I had to treat, and see what they would have said about it, like post-treatment, I might ask them a question that I have, but I don’t go through any checklists or any preparation or anything. I would think it’s a good idea if you have a couple questions beforehand when you go in. If you ask, in a courteous way, and you feel you’re not getting an answer to your question, don’t hesitate to ask again, because you are the patient, and you are entitled to that information. There’s a lot of issues around just basic functions around things, around sex, which people have a hard time with, and people have a really hard time accepting that.

I mean, as people we care to think of ourselves all as sexual beings, and when that’s compromised, unfortunately, people think of themselves, more often than not, as being less than what they wish they could be. At 18, it seems like a good age. You understand the hemophilia, and your condition, enough to be able to go on your own, and to be able to go into the visits and understand what they’re talking to you about. I think any younger, it’d be difficult to understand the physician, and be able to talk to them appropriately.

But I think any older, you might begin to lose sight of your own independence, and be more dependent on your parents to do things for you. This is a perfect time, because this is 18, it’s a time when a lot of things change in their life. So it’s tough to let go, but I think that I’ve taught him what’s important. You know, how to make good decisions, and it’s his time now.

It’s his time to move on. I think I’ve heard other hemophiliacs, telling me how their wives or girlfriends have learned to treat. Is that an option, how does that work? Yeah, that’s definitely an option.

It’s always a good idea to have somebody as a back-up for you. So if your girlfriend wanted to learn, because you know what you’re doing, This is going to be a little bit quicker for your girlfriend, Provided that she’s comfortable with things, but it would require one or two trips down to the hospital just to get comfortable, because I’d want her to go over the steps a couple of times with me. I think it really is important if it’s a serious relationship, If it’s a lifelong relationship, that you introduce your significant other to your hemophilia treatment team.

We would often say, “Bring in your girlfriend, bring in your fianc√©e.” So I will always ask, “Who is this, and is it okay if we talk freely in front of so-and-so, or would you like us to talk privately?” But it’s, you know, I think anyone who that patient wants in the room is welcome to be in there as long as everyone’s comfortable. Some of the families have real hard times with chronic disorders. They’re angry, they’re frustrated, they’re anxious, it’s never going away. Some of the families, I’m not saying ’embrace’ it, but will come to a meeting of minds and a meeting of hearts with it, that this is how it’s going to be, let’s make the best of it.

I feel incredibly privileged to work with these families. You see them day-in, day-out. When I have a mother that can pick up the phone and say to me, “He’s done it again.” Doesn’t identify herself, doesn’t identify her child, and yet I still know exactly who it is, and the conversation carries on.

When you see a family that’s brand new, and so shell-shocked, and you see them as the child moves through the lifespan, and see them when they transition out, you know you’ve done something good. And you know that you’d never be any other place in the world than with these families.