1. < Blood Cancers & Disorders
Profile picture for seamus1010

PV and peripheral artery disease PAD

Posted by seamus1010 @seamus1010, Feb 16, 2023

Recently diagnosed with PV.
several years ago, I had an angioplasty in my right femoral artery due to a significant blockage there, diagnosed as peripheral artery disease. I hadn’t smoked in over 30 years. I’m curious if there is an association between PAD and PV.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for casevin7
casevin7 | @casevin7 | Sep 11, 2023
In reply to @casevin7 "I am beginning to think my mom had this and no one told us. She lived..." + (show)
Profile picture for casevin7 @casevin7

I am beginning to think my mom had this and no one told us. She lived with myelofibrosis for over 30 years and finally passed away after surgery to insert stents in both legs. She always complained her legs hurt and ached but the doctor kept dismissing her because of her age. She had 90 percent blockage in both legs! Unfortunately she did not survive the surgery because they tore her artery/vein and she slowly bled to death 21 days later.

Jump to this post

In addition, I am now fighting PV with my monthly blood draw today. Mom's mom had AML and my sister's daughter has neutropenia. So don't tell me that this blood disorder doesn't run in families!

REPLY
Profile picture for deannarls
deannarls | @deannarls | Sep 11, 2023

I am so sorry for this - I am sure you did your best at the time. I am 67 and this all started for me this past April. I am still working - I love my job and o do not want to be disabled or handicapped by this. I should hear from Mayo this week and I will go there if they agree to see me.

REPLY
Profile picture for artymarty
artymarty | @artymarty | Sep 11, 2023

Re: connection between PAD and PV....I have been diagnosed recently with both PAD and PV. I am an 80 year old, active, never smoked, usually ate well etc. History of CLL, but it has not been active. Have not met with a vascular surgeon yet (Oct). Have a JAK2 mutation which initially led to dx of ET , but blood test revealed low erythropoietin which likely means it early PV. Not sure anyhow has made a direct correlation between PAD and PV- am on xarelto, baby aspirin, hydroxyurea and had a phlebotomy last week. Lots to think about....

REPLY
Profile picture for daisy22
daisy22 | @daisy22 | Mar 5 6:42am

I need help with my foot and left leg. My doc told me I don't have neuropathy after touching my foot and found a pulse. I wonder if I have PAD. I had anterior hip done 3 years ago on the Hana table and since then my leg and foot have been tingling, numb, cold and the symptoms are going up my leg with cramping in the calf, foot is swollen, had to buy bigger shoes, trouble walking. Around my left ankle I have lots of broken blood vessels and swollen ankle. The orthopedic doc is a jerk and no help. My current primary we are leaving as she doesn't address complaints. I am going to switch to a different clinic and if that doc doesn't listen to me, will move on. Any ideas the kind of specialist I should see or what to address with my present doc?

REPLY
Profile picture for jerrel
jerrel | @jerrel | Mar 6 12:05pm

I'm sorry to learn that you don't feel heard by your current docs, but glad you are advocating for yourself. I have dealt with neuropathy since my 2011 stroke and I consistently have a pulse in my feet. I am now battling polycythemia. I am receiving great care by a Hematologist Oncologist.
Have you considered your surgeon?
I just remembered having multiple leg ultrasounds to r/o clotting. I am fortunate that I get relief from Lyrica in battling neuropathy.
All the best in your search!

REPLY
Profile picture for hanya
hanya | @hanya | Mar 6 1:04pm

I suffer from neuropathy
I believe it came from HAVINg blood illness ! PV too many RED CELLS ! It’s awful! Pain is intense and non stop especially at sleep time! Good luck to you

REPLY
Profile picture for jackiecarey
jackiecarey | @jackiecarey | Mar 8 6:37pm

I have Jak2 positive PV treated with hydrox since October 2023...I noticed my blood values were slowly rising over time with blood draws..I mentioned to my internist and he said it was dehydration on several occasions..One day my vision in one eye went black, I stayed calm, timed it after 2 minutes the blackness started receding which took another 2 minutes. I knew this is a TIA (stroke warning) so I went to the Emergency room..They did every test known to man and told me everything is fine..When I got home I looked up my blood work and now the H&H levels were well over normal.. I said enough and went to see a hematologist...At my first appointment the hematologist immediately said I have PV, it's rare and that's probably why it wasn't picked up until now. He had a Jak2 drawn it came back positive. in the mean time I went to my cardiologist who picked up left narrow carotid artery off the ED testing from the TIA event.. while waiting on a neurosurgery appointment I decided to go to MDAnderson hematology . Their routine is to retest everything and all came back positive including a bone marrow biopsy. Again in the meantime the neurosurgeon wants to perform a carotid endarterectomy. MDAnderson wanted the surgery done before they started treatment for PV. After the surgery, treatment for the PV started 3 months later..They tried several different doses of hydrox, baby asa and 2 phlebotomies later I'm currently on hydrox 500mg 5 days a week.. I have blood work next week and I hope it's enough to control the PV however I'm feeling fatigued and I expect the MDA will increase the hydrox. My Cardiologist is of the mind that PV can cause vascular and arteriosclerotic changes for several reasons (I won't bore you with the specifics) and merely because of the thick blood and higher incidence of blood clots..He recommends to carefully watch my blood pressure keep it in the area of 120/80. Consider going on a statin for cholesterol control, healthy weight, diet with plenty of water.. I'm 77 never smoked and haven't used alcohol since this ordeal started. I'm giving my detailed story hoping it helps others with PV...One last thing, my Hematologist told me that PV particularly goes undiagnosed on a fairly large scale. person dies of a stroke or heart attack, the hospital codes as such when in fact occasionally the root cause is PV. ...I'm told large academic institutions are working to educate the medical community ....I wish everyone a safe journey moving forward.

REPLY
Profile picture for stevehpad
stevehpad | @stevehpad | Jun 25 2:16pm
In reply to @deannarls "Hello, I am hoping to receive some feedback regarding PAD. I have had a Doppler Study..." + (show)
Profile picture for deannarls @deannarls

Hello,

I am hoping to receive some feedback regarding PAD. I have had a Doppler Study and a CT scan which revealed 100% blockage from my hip to my knee in my left leg and 90-99% blockage from my hip to my knee in the right leg. I had no symptoms at all until April of 2023. It took forever to get the testing completed in Virginia and I have met with 2 surgeons. One told me I am not at risk of dying from the blockages as long as I continue exercising. The 2nd surgeon wants to remove the blockages but I am terrified because he told me he has to go into the left artery at least 3 times to remove the blockage. I worry I will have a stroke or heart attack during these procedures or shortly thereafter. I cannot imagine how strong my arteries would have to be to be able to manage this type of hammering away at the plaque. Has anyone on this blog had their plaque removed at Mayo? I have sent my studies to them and hope to hear back from them next week to schedule a consultation. Thanks/Deanna

Jump to this post

Hi Deanna: Not sure if you went ahead with the surgery...but check out our PAD Facebook Group never the less :-)...https://www.facebook.com/groups/339414847401943

REPLY
Profile picture for stevehpad
stevehpad | @stevehpad | Jun 25 2:18pm
In reply to @deannarls "Hello Angie, I had cramps in my calves. If you go online and review symptom for..." + (show)
Profile picture for deannarls @deannarls

Hello Angie,

I had cramps in my calves. If you go online and review symptom for PAD - that is one of the main symptoms. The Internet advised to walk despite the pain - walk/rest - walk/rest until you build up a tolerance and eventually you can walk further distances - the Internet site I reviewed said it tales 6 months to improve. The walking worked and I eventually purchased a treadmill. Now, I walk 15 minutes at a walking speed of 3 miles per hour - rest/repest - rest repeat until I walk 50 minutes. I also stopped eating sweets and lost 31 pounds. The more weight we carry the harder it is on our veins and arteries. The walking creates pathways for our blood to flow so oxygen will get to my lower extremities. I also had the CT scan of my aorta - the CT is wonderful because it showed everything that is going on from waist down. I have sent everything to the Vascular Dept at Mayo and hopeful they will get back to me next week. Hope this helps - Deanna

Jump to this post

Hi Deanna: You are doing everything right 🙂 Check us out at https://www.facebook.com/groups/339414847401943

REPLY
View MoreView Less
Please sign in or register to post a reply.