HI Moltroub,
Thank you for your response, and yes it was helpful! I did have a nose bleed last night after only 2 doses of Plavix 75 mg and 1 ASA 81 mg. I messaged Dr. Bendok but have not heard back yet. Per protocol, I did take the ASA last night and Plavix this am. I also nicked myself shaving (which I did not feel) and that bled a little too. I will have the CYP2C19 genetic test done later this week to make sure I am a responder, but now we are wondering if I am a hyper-responder. There is a very small abstract on this, and the major bleeding complications in hyper-responders is 48.2%. 80% were women. That makes me super uncomfortable, because they do not classify âmajor bleedâ as being a hematoma, IPH, etc. We will know my PRU after the test, and I am guessing that this is not Dr. Bendokâs first time dealing with this. I am ordering one of those metal gloves for the kitchen. I do so much cutting and I am not the most coordinated person on the planet to begin with. I cook very healthy, have low BP, low lipids, and my BMI is 17; so I have all of that working in my favor.
If all things go well, which they will, it sounds like I will be back to normal within a week or so! This is great news. You have been through so much more and you sound like you are doing well and are so positive!!
Please let me know if you know anyone else with early onset nose bleeds/bleeding in general? Itâs hard not to be concerned about this.
Kim
Your path on Plavix sounds just like me @phoenix33 ! Yes I did have several nose bleeds, one of the first ones caused us to reach out to Dr. Wolfe. They told us it was all normal. A little scary right before surgery! I bumped my arm on the blasted wall in the hallway that I do believe must have sand particles in it LOL. After we got the bleeding under control, I had a flare up so it took a bit, had to wash the walls. You know you canât just wash one area, it shows up too much. The PA at the dermatologist has diagnosed fragile skin because of the dermatomyositis which didnât help. Our Veterinarian ordered me a box of Vet wrap it got so bad. I had bumped my arm on something there and she had two of her three assistants trying to stop the bleeding. I said letâs just go next door to Dr. Tyeâs and get some sulfur or just get some salt. The blood was everywhere. I was so done with it! Once off the Plavix, everything settled down. I was a bit peeved when they didnât use paper tape for the IV, etc. The evening after my procedure I was sent to Neuro ICU and transferred to Trauma ICU as someone needed the Neuro bed more than I. Due to the pandemic, WFBH had to make lots of changes and beds for Neurosurgeons was one of them. Each unit had a NICU RN assigned to them for cross training. The young RN in Neuro was very interested in learning and I offered me as a start in a new field. Alas, they were only allowed to observe. In Trauma, there was a woman about my age who had been working with the babies for 34 years. She didnât know what to do with adults and wanted to go back to the NICU. I felt for her, she wouldâve done better in Neuro. Luckily, she ended up being the one to remove the bandaids. She suggested ripping it off so it wouldnât hurt so much. Begged her not to, explained the last time I did that, I ripped the skin off down deep into the subcutaneous tissue in the web of my hand. She looked at the scar, said âoh myâ and gently with alcohol, removed the bandaid, she said it was just like taking one off a baby, only bigger. I think she was in her element finally!
I really believe you will do fine! You are much healthier than I am. Try not to overthink everything. On that note, I was thinking if you could do a menu for easy dishes for your husband it may help. One of my favorite dishes this time of year is tuna on a green salad with a Italian dressing and a piece of crusty bread. You donât even need to make the tuna complicated, a can will suffice, unless he likes to grill. I think he can do thatâŚ
Hugs,
Moltroub
HI Moltroub,
I am not sure if you are on steroids for your dermatomyositis, but as you know, they will make your skin paper thin. My husband is very glad you are under the care of a rheumatologist. Some derms will treat it, but it makes the rheums very uncomfortable.
Of course, I have not had any more nose bleeds since the first one, and do feel a little silly messaging Dr. Bendok. He probably has anxious patients messaging him daily with the smallest of non-issues. I do have a nice bruise on the top of my foot that I have no idea where it came from. I know this is normal, and I bruise easy to begin with.
We love tuna nicoise salad, and I make it once a week or once every other week (with the anchovies, egg etc). John can definitely make that for us, but he is certainly not a Bobby Flay either LOL!
I am trying to focus on positive energy and relaxing as we are now less than 7 full days away.
Thank you so much for all of your support!
Kim
No steroids for me @phoenix33, I cannot take them. Apparently I am allergic or extremely sensitive, but the PCP put it down as allergy. It messes up my brain to the point I have 0 cog skills, tremor went to both hands, and speech down the toilet. She has me on Hydroxychloroquine, itâs the malaria drug in case I spelled it wrong. It was the GI doc I was sent to last year for the upper abdominal pain. He told me to tell the PA something, I forget, but it led to the biopsy which led to the Connective Tissue Disorder. Unfortunately the PA at the derm didnât want me to pay for extra blood work so he didnât do it. The Rheumatologist wasnât too pleased he sent me too. But eventually the blood work gave her the proper diagnosis. She had thought it to be one of the Lupus as Dad had SLE. She is a great doctor for me,. The odd thing about my brain is I learned her full name and thatâs what I call her, I just canât say Dr. McClory without using her given name, even typing it is odd to me LOL
Iâm glad he can make the salad! We also love a dish with grilled chicken, spinach and Roma tomatoes. We put lemon pepper on the chicken and spinach, itâs wonderful!
Hugs,
Moltroub