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Have you had any bleeding issues even without blood thinners?
I realize that many PH patients are on blood thinners. The most common reason to use these is to prevent blood clots. Those taking these medications may have bleeding issues. Most often, blood thinners will cause someone to bleed for prolonged periods. I have not been on blood thinners in years. But, I still have some problems with bleeding. Even with a small cut, I will bleed quite a bit, and it takes some time to stop.
I do see a hematologist for my anemia, and he is addressing this issue, too. He says this is most likely related to my PH medication through the years. I had heard this before, too. But. I am also on Procrit injections that I do myself. This is to help my blood due to anemia and kidney disease.
Has anyone also had any bleeding issues, such as prolonged bleeding, which are not on blood thinners?
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25 Replies
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I did. It’s probably TMI, but my monthly cycles were to the point of hemorrhaging until I had a hysterectomy at age 32. Pathology determined it was because the blood vessels that bleed during my period had grown into the muscle wall of my uterus. I never knew (until well past my hysterectomy) that it wasn’t normal to have to change “protection” every 30 minutes for the first day and a half. That could explain why I threatened miscarriage with all three children (and had five other miscarriages early in pregnancy).
That’s probably not what you were asking about, especially since I don’t have PH, but there ya go.
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Very interesting. I do not take blood thinners. I was in the hospital for three days in February for severe bleeding issues. I had a colonoscopy in January and had some polyps removed; I also have a prolapsed rectum and have had three surgeries for that. Bleeding is not present now. Doctors attributed the problem to the prolapsed rectum.
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Hi All, back in the 90s (If I remember correctly), a study was done that showed a higher rate of survival for PHers that were put on blood thinners. I don’t know if its been examined again, but the bottom line is that PH causes heart dysfunction, blood is not flowing through our heart and lungs as it should and that can cause fatal blood clots. I’ve been on warfarin since diagnosis: 21 years! My PH doctor told me that in addition to being on blood thinners, being so VASO-dilated from our meds, also contributes to bleeding. In 2012 my blood got dangerously thin as I was switching meds left and right for my ulcerative colitis (my INR was 14). I hit my leg and developed compartment syndrome and needed emergency surgery. My doctor told me if I’d hit my head instead of my leg, I would’ve died, so as you can imagine, I’m very diligent in getting my INR checked on schedule. All PHers should be super careful and get your INR test on time!
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Hey @mamabear007, I’m so sorry to hear about your miscarriages. That had to be traumatic to go through.
I also bleed irregularly, and it’s not even monthly. About twice per month, I have clots. I’ve spoken with my Gyne, and she said it’s nothing to worry about. So, you’re issues with the blood vessels in your uterus are concerning. She had me volle up with my dermatologist.so, I really do appreciate you sharing this.
I’m sending you hugs from Texas.
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Wow, @nancy-mcsweeney, you’ve been through a lot of medical procedures. I’m sorry to hear about your multiple surgeries. I’m grateful that you’re not having any more bleeding issues.
It’s interesting when some doctors don’t understand how PH affects our entire bodies.
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Hi @joanne-sperando-schmidt, thanks for sharing your experience. It certainly is crucial that those on blood thinners stay up on their INR and other labs. I’m so sorry to hear about your emergency surgery. Please be careful not to have any bumps or falls. It can quickly escalate up and turn into an emergency.
How are you staying up to date on your labs during this lockdown? Do you use the at-home kits?
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Hi Jen,
Yes, life on blood thinners is complicated. I’m very cautious in all I do. I don’t have a home kit (I used to but insurance wouldn’t cover it after a while) so I have been going to the blood lab. I use a mask and gloves and thankfully, my lab is taking many precautions to keep waiting patients apart and to a minimum. I’m grateful they’re so careful.
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Several of the PH medications have anti-platelet effects which can increase bleeding, especially in those prone to bleeding anyway. This is a big issue in patients with PAH secondary to Hereditary Hemorrhagic Telangiectasia (HHT) that already have problems with blood loss from chronic nosebleeds and/or GI bleeding. It makes management of PAH even more challenging.
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@jenc somehow Cullen managed 5 years with PH not taking blood thinners. The only excessive bleeding I remember him experiencing were nose bleeds. It seemed the more his PH progressed the more frequently he would get them and the harder they were to stop.
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@mamabear007 I can only imagine the emotional struggles from multiple miscarriages and having worried through throughout the pregnancies with your 3 children. I experienced excessive bleeding a few years ago as a result of benign cysts and endometriosis. My doctor placed an IUD and that helped tremendously! I’m planning on keeping it until menopause.
Thank you for your willingness to share such a personal experience. You never know who might be reading that it will help.
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Hi @joanne-sperando-schmidt, I am sorry to hear that your insurance stopped covering the home tests. I remember when most had started doing that. But, I am grateful that you can get out and have them done in a safe environment.
Last week I was due to go, after a 6-week break. I had a scratchy throat and decided to cancel and will go this next week. This was for other labs, not INR. My local Quest is small but often quite busy, so that makes me nervous. Although the two ladies there, I adore, and they are staying safe.
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@joanne-sperando-schmidt you make an important point about INR testing and the information you provided is super informative. Thank you!
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Yes, @scott, that is what my PH doctor mentioned and my hematologist that my meds are most likely the culprit. It certainly can make things challenging. Do you have any experience with HHT as a caregiver?
I do not know anyone offhand that I have met with PH due to HHT, but have heard of it. I appreciate your feedback.
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I am sorry that you went through all of that @nancy-mcsweeney. Do you have any bleeding issues now or did the procedures totally eliminate that problem? I hope at least you are feeling more comfortable.
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Hi @colleensteele, that is great that Cullen never needed a blood thinner. Although, nose bleeds can become scary and annoying, especially at his young age. He sounds like such a trooper and easy going.
I am grateful that I only took it for a short time. Then I was told that it was not needed. I was happy to be rid of one pill, Hehe.
My hubby, who had stents last year, is on one of the newer ones, and he requires no monthly blood test. I did request one at his next visit. As a cyclist, I am scared each time he goes on a ride. He does wear a good helmet.
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Bleeding has stopped, but I will need another surgery to put intestine back into body (about 3 inches protrudes now) and staple it in place again as well as remove another portion of it. Yes, I have had this surgery three times already. Sure would be nice if it would stay put this time.
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@jenc Yes, I am part of a large family with HHT and have family members with PAH due to HHT. It is not very common as only about 1% with the ACVRL-1 gene develop PAH in HHT
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Wow, @scott! I am sorry to hear that. But, it sounded like you were pretty familiar with HHT and PH. That has to be a complicated combination. I know with my anemia and other bleeding issues that complicated things, so I am empathetic of your family. I appreciate you sharing your experience with us. Others may learn from this, too.
Take care, and stay safe.
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@nancy-mcsweeney, I am so sorry. I sure hope that the next surgery will hold. That has to be frustrating and uncomfortable, to say the least. I am thinking of you and update us once you can get that surgery.
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With this Cornavirus going on, the surgery probably won’t occur until later this year.
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Jen, I use Quest Labs too….they closed the nearest office because the waiting room was too small! I go one town over to another Quest with a huge waiting room. They arranged the chairs very far apart and there’s only 8. If you’re #9, they ask you to wait outside the office or even in your car (and they’ll call you). I like how diligent they’re being.
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@nancy-mcsweeney, sadly, I think you are pretty accurate. Hopefully, we will start seeing better control of this COVID-19. We will want to know when you are scheduled so we can wish you well during the surgery and recovery.
Thanks, @joanne-sperando-schmidt, that helps to know that maybe my local Quest will do the same. I need to make my appointment now. I will keep y’all posted next week.
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@jenc, that issue of passing clots a few times a month is concerning. Please keep an eye on it. If anything changes, it would be a good idea to give your gyn a ring.
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Thank you, @colleensteele. Yes, having miscarriages was a struggle. It sounds as though you’ve had your own struggles. I’m glad you found relief from the excessive bleeding.
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