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I was diagnosed with PNH in 2018. I am now 70 years old and need my hip replaced what should I expect for recovery.

A myPNHteam Member asked a question 💭
Centreville, VA
August 11
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A myPNHteam Member

Hi Debra! A year ago, I had my gallbladder removed due to gallstones. At the time, I was experiencing severe hemolysis. My hematologist coordinated with the surgeons and prescribed extra doses of my PNH medication (I was taking Pegcetacoplan back then) for before and after the operation. This ensured my safety during surgery. A hematologist will likely be present in the operating room in case any blood or platelet transfusions are needed.

It's possible, not only because of your age but also because of the condition, that it will take you some time to fully recover. This is normal; medical procedures can slightly alter PNH activity. It happened to me, and you just need to be patient and have faith.

Sending you a big hug and I hope you have a speedy recovery!

August 19
myPNHteam

Hip replacement recovery with PNH requires some extra consideration, especially at 70. PNH adds layers of complexity to any surgical procedure, so it's really important to work closely with both your hematologist and your orthopedic surgeon before, during, and after the operation.

Here are some key things to be aware of:

Show Full Answer

Hip replacement recovery with PNH requires some extra consideration, especially at 70. PNH adds layers of complexity to any surgical procedure, so it's really important to work closely with both your hematologist and your orthopedic surgeon before, during, and after the operation.

Here are some key things to be aware of:

- Blood clot risk — PNH already increases the risk of dangerous blood clots, and surgery adds to that risk. Your care team will likely need to carefully manage anticoagulation (blood thinners) around the time of surgery
- Anemia management — PNH can cause your red blood cell counts to be lower than normal, which can complicate surgery and slow recovery. Blood transfusions may be needed
- Complement inhibitor therapy — If you're on a complement inhibitor like eculizumab or ravulizumab, your team will need to plan around your dosing schedule carefully
- Infection risk — Some PNH treatments can weaken the immune system, so extra precautions against infection during recovery are important
- Age factor — Being over 55 with PNH does carry a higher blood clot risk, making close monitoring during recovery even more critical The most important step is to make sure your hematologist and orthopedic surgeon are communicating with each other before scheduling the procedure. Don't hesitate to ask your hematologist specifically how your PNH management plan will be adjusted around surgery — that conversation could make a big difference in your recovery. 💪

August 11
A myPNHteam Member

Hi Juan,
Thank you so much for the encouraging words. It is definitely putting my mind at ease. I will be patient because everything medically I have encountered has taken a while to recover from which I know to expect.

I appreciate you responding, God Bless

August 19
A myPNHteam Member

Thank You for relieving my anxiety about surgery. I hope you have recovered fully from your surgeries and continue to do well. God Bless

August 18
A myPNHteam Member

I have had 2 major surgeries in the past several years. I am 73. I always require platelet transfusions and depending on the surgery, blood transfusions. The only complication I had when I had spinal fusion surgery was low blood pressure which required 5 days in ICU. That may or may not have been related to PNH. I’ve always had low blood pressure. Hope this helps some . Hip replacement surgery is so much easier now than when I had both hips done in 1994. You should do well with your hematologist and ortho doctor working together. Good luck!

August 18

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