Just had a tele-medicine visit with my new MPN Specialist at Johns Hopkins. the renowned Dr. Spivak has decided to cut back after 47 years in practice. The new doc, Dr. Braunstein was trained by Dr. S and seems like a great doc. He recommends continuing my current treatment regimen for JAK2+ PV age 65 - phlebotomy-only with no cytoreduction and no aspirin. Not a typical recommendation I know, but it is working for me. 1 year on this regimen and doing well. No thrombosis and the excess hemorrhaging has stopped since I stopped the aspirin. My erythrocytes are gradually creeping back up to normal (they over-phlebotomized me). It has actually been a year since my last phlebotomy and my erythrocytes are still low, but HCT is up to 42%. Platelets continue to cycle between low 500s and mid 700s. Leukocytes are WNL, though Basophils occasionally edge over on the high side. All-in-all, treatment for the PV is on track. I will resume a more cautious phlebotomy schedule after HCT = 45%.
More good news - recovery from the Brain Surgery last year continues to go well. They have backed off on the monitoring to every 6 months. It is hopeful that the surgery was curative. The tumor appears to be gone, No sign of recurrence yet. Due to the Neurofibromatosis type 1, it likely will recur someday, but that is a problem for another day. Actually not sweating it.
More good news - heart surgery-atrial tachycardia issues continue to do well. The surgery did its job. Might get some sinus tachycardia every once in a great while, but that is not big deal. Am at risk for A-Fib in the future, but again a problem for another day. Not something I sweat.
Not so good news - the docs found some kind of tumor on my mandible and possible two more masses. Likely an intraosseous neurofibroma, but we don't know for sure. It is affecting my teeth, so will have to get it out. Have to wait due to COVID situation. Will get to it as soon as I can. The surgery will throw me into reactive thrombocytosis, but we will deal. Compared to brain and heart surgery - not a big deal.
Not so good news - I further damaged a bad knee where I had previous surgery. Complex meniscal tear with 2 chondromalacias. Doc wants to do a meniscectomy. I am not so eager to cut away more meniscus and just kick the problem down the road. Will have to do something, but want to pursue something that will actually fix the problem and protect the knee. Surgery is likely, but I want to actually fix it. Another thing that may trigger reactive thrombocytosis (depending on the surgery), but will deal with it as needed. For now I am just doing PT. Also hurt my shoulder. More PT!
Not so good news - cataracts are progressing to the point that I qualify for the surgery. They seem to be causing some convergence insufficiency in my vision. Docs want to rule out a neurological cause due to the brain surgery, but I think it is just my aging eyeballs. Had to put off sorting it out due to COVID. Will get it taken care of ASAP. This is actually the only surgery I am looking forward to. Better vision and no reactive thrombocytosis. May actually treat this surgery as a reward for doing the others. It is all in how you look at it.
So a mix of good and bad news, but on the whole I am doing quite well. I am out and about as social distancing permits - a bit gimpier than usual, but still getting around. Looking forward to the nice weather before it gets too hot. Hoping the restrictions will lift (with relative safety) before too long. I know COVID is not just going away, so we will just have to find a way to carry on despite the virus. Do let's all remember to be thankful to the medical care providers who have been there for us despite the risks. I have a great care team who have been there throughout all this mess. They are a real blessing!
So all of the best to all of my MPN Brother and Sisters. I am glad and blessed to have you all in my MPN family. We are truly stronger together.
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hunter5582
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I love your positive attitude and your strength of character. You have been through so much but you keep us all informed and hopeful for our own futures. Thanks for being a shining light for all of us.
We each just have to deal with what we have on our plates the best we can. I am really fortunate to have a great care team for the various ailments. If I run into a doc who is not providing me the care I want, I just fire the doc and go find a better one. Even "minor" issues turn major when your docs don't listen. Hope you get your docs to listen. Sent you a facebook message with a suggested intervention to enhance you own care options.
That is a good rule of thumb to go by about firing the doctor that don't listen and that even the minor problems turn major. Your doctor's care is only as good as that relationship is and that starts with communication. I really used to care about what my doctors thought (not trying to be flip when I say this) but I put that thought above the actual care I received which can be dangerous. I literally was in my car when I saw something after seeing a doctor. I debated on weather to go back in but thought this is my life and if this is as big as I thought it could mean a lot so I marched back in and got an answer. The doctor was really cool and listened and explained out in the waiting room. Now I don't worry so much about any of that thank goodness as it took me awhile to get to that place.
That is so very true. Open communication and mutual respect is key in the doctor-patient relationship. Without it, treatment quality is unacceptable. It is a lesson we all need to learn, particularly in systems of care that do not always support optimal professional relationships.
Funny you should mention that as I do embrace a Warrior mentality. One of my favorite books is "Make Your Bed" by Adm. William McRaven (retired Navy SEAL). Interesting read and a great philosophy. Very relevent for people with MPNs.
Thanks for the book reference. I agree with the author:
« "Remember...start each day with a task completed. Find someone to help you through life. Respect everyone. Know that life is fair and you will fail often. But if you take some risks, step up when times are toughest, face down bullies, lift up the downtrodden, and never, ever, give up - if you do these things, then you can change your life for the better...and maybe the world!" (103-104) »
That philosophy really does help guide me in dealing with the MPN and other health issues. Life is sometimes unfair. Sometimes you fail. We do need to find others to help us and be willing to accept the help. We also need to reach out and lift others up. None of those things are easy, but our lives are much better when we strive to do them.
Hunter - you are truly and inspiration to us all. Thanks for sharing the update - my thoughts and prayers out to you, your health and family. Keep being you!
Thanks for the update! You are not only an encouraging and educational voice on this page, but also inspirational. I’ll continue to pray for your health and well-being! Best to you!
No problems, I also suffered with a frozen shoulder, too up boxing and weight training, now fixed.
It took two years.
I have just ET and Diabetis type two. Just on the hydroxicarbinide, two 500mgs once a day. Phone consultations with the clinical nurse specialists every three months.
I find it fascinating all the different regimes across the world. Just to manage these delicate conditions.
Hi Hunter, you are managing very well with this. Your attitude I feel sure will carry you through this. Hopefully the Covid situation is fading a bit so we can rest more on that scale then. Take care.
Love the book reference! My father was a navy man and he was a hugely positive influence in my life with his confidence, quiet self-believe, service to others and positivity. He knew when to challenge and didn't put up with nonsense. When you share your posts hunter, you remind me of him and his ability to calm anxieties by knowledge and through conscious choice - mindfulness is a strength we all have the power to possess which you bring here to model to all so well. Thank you.
Wishing you all the best with your new consultant and with resolving all your new challenges. I hope the bad news come good in the end.
Thanks for your update Hunter and sorry to hear of your not so good news. Keep on keeping on! We are lucky to have you and your knowledge on this forum. Take care, Jane x
Goodness hunter5582, what a lot you have to manage. I am glad you are pleased withy our new MPN specialist -and the treatment regime. It is humbling to hear how you get to grips with each challenge. Thank you for all the input you provide on this forum, you have so much knowledge. Best wishes.
Greetings from London. I agree with the previous posts and believe you are a true warrior. Your positive and realistic approach is wise and an inspiring.
Thank you for sharing your experiences and I wish you well.
Hunter, if you could bottle your positivity I would buy it. Love your outlook on life and huge respect to you for just getting on with it and living your life. I've had four operations on one knee for a meniscal tear; I have a bakers cyst now - I call him Cedric - and short of a plastic knee, I've not had any eureka moments from consultants on effective treatment! Would love to hear what you find out.
Will definitely post about the journey with the knee and anything I learn. I do not want to just cut away more damaged meniscus and kick the can down the road. I am already getting close to bone-to-bone contact in the knee. WIth my propensity to inflammation due to the JAK2 mutation, this is particularly concerning. I want to avoid ever having a knee replacement. My body would not respond well. Currently looking at: gel-injection like SynVisc, stem-cell injection like Regenexx, artificial meniscus, and meniscal allograft transplantation. I am carefully researching each option and what may be viable options. Will likely choose the most minimal intervention first. Apply the mantra "First do no harm." Particularly important when you have a MPN.
Yes the artifical route could be good, I think the solutions have come a long way since I had my ops. Had first one after London marathon in 2008 and it just degenerated from there.
Wow! Had no idea you had all these problems to deal with. I really admire your outlook and positivity. Do hope you are able to have surgery in the not too distant future. We all gain so much knowledge from your posts. Thank you. Regards, Fran
Thanks to all for your positive and supportive comments. I think we each just have to do the best we can do to cope with what we have on our plates. Reaching out to others to both offer and receive support is a big part of how I cope. The MPN family on this forum is a real asset for me and for all of us as we deal with our various iterations of rare disorders.
All of the best you all of you all. We are truly stronger together.
Hi Hunter, you really are a true light and a role model. I have found your knowledge and posts not just informative but also calming and of comfort which not just helped coming terms with everything but also allowed me to take some control and realise it is possible to learn about somthing so complex. You are an asset to this forum and your attitude is one to follow. I hope that as time goes on you beat each of your obstacles one by one. Thank you and I wish you the best going forward.
Well, dangit Dad. The hits just keep coming this year, don't they? It has definitely been a tough one for us. I am very looking forward to this COVID stuff to stabilize so we can see (haha I'm so funny) each other again. I get the hesitation to have the ortho surgeries. I need to have at least 2 in the future (wrist is bone on bone and painful, and my left hip socket is malformed so my hip pops in and out with ease), but I'm super hesitant to move forward with those because I know that my numbers will react badly.
I'm so grateful to have such a positive influence and role model. I think if I didnt have your wisdom imparted upon me for these almost 35 years, I would be even more of a basket case.
What a positive and kind message, relating the good and not so good news. You are a strong and brave person. Hope you heal well and you sound to have a fabulous team around you.Enjoy each day , a lovely message for us all.
Hunter, Always appreciate your posts and advice.Did not realise your list of issues was as long as it is.Reminds me a bit of Steve Job's wife taking over his health management issues as a " project of specialist coordination".Point being that the specialists needed coordinating. I am curious to hear you opine on the Covid issue and US healthcare . Will things ever change? The world stares in disbelief. Soldier on Hunter...your posts have value.
I have given passing thought to branching out into case management as a sideline. So many people struggle with having multiple specialists who don't talk to each other and systems of care that care more about their bottom line than the welfare of patients. I have learned to go to every appointment with a written agenda and a list of what is going on in my care with other specialists. I insist the doc listen, even if it is not "related." We are whole people, not just collections of body parts. Sometimes issues are related, even when the connection is not obvious. We have to advocate for ourselves to be treated in a wholistic fashion and ensure high quality care.
My opinion about how the COVID situation is being handled by certain political figures ranges from disbelief to disgust to respect for those who demonstrate wisdom and sound judgment. A number of political leaders seem more concerned with their election than saving the lives of the citizens whose votes they want. In a country as large and politically divided as the USA, response to COVID is like most everything else - all over the map. We do not have any national political leaders with the gravitas and core leadership to effectively manage the situation. That is true for both sides of the political isle. As far as I am concerned - a pox on both of their houses. We do have superb medical professionals and leaders who are a voice of reason. Their influence is being felt. Our political leaders are gradually getting things into place to allow us to move forward, but it has taken longer and has cost more lives than it needed to. I do agree, we need to reopen things before the economy completely collapses, but we need to move wisely and cautiously until things can normalize. COVID is not going away. It is likely here for good. We need to find a way to keep things moving along while minimizing risk until vaccines can be developed. There are no simple risk-free solutions. We will all just have to do the best we can to deal with the situation as it is. For myself, that means getting out and doing what I need to do, but taking precautions and minimizing my own risks. Ultimately it is my decision and my responsibility to ensure my own health and wellbeing. Political leaders will either make that easier or more difficult, but it is up to each of us as citizens to make wise choices. At the end of the day it is up to each of us to take personal responsibility for ourselves, our families, and for our fellow citizens.
Hello Hunter, hoping all goes well with your new haematologist, and thank you for being so upbeat and inspiring to us all, it's good to have you in our 'family'. Best wishes, Maz
I had not seen that poem before. It is quite beautiful and apt for all of us dealing with MPNs. Thanks for referencing it. It is indeed true that things can seem quite bleak at times. We often face great difficulties. It is important to look for the beauty and joy still to be found even in difficult times. As in the poem, even an old worn thrush can bring "Blessed Hope" of which we are sometime "unaware. " I do wish for all that joy and hope never fades, particualry in times of trial.
So glad you liked it, I must say it’s not the outward appearance of the darling thrush that I identify in yourself but his beautiful inner indomitable spirit
Your mental strength is exemplary . Also the resolve to address everything calmly and with the power of intelligence rather than just emotionally is something I am going to keep as an example for myself to follow . Bravo !!!
You silly old bugger, now you have me in floods of tears. After all that has been going on this year and now all this happening to you, someone who has supported everyone through every tough moment in their life and who I consider a dear friend is just to much. You treat your own problems with such flippancy, well no more young man! We are all hear to listen to your problems and support you like you do to everyone else. We want weekly updates please so we can all rally behind you and let you express what it appears you try to hide behind your wit. We all care so much about you hunter and don't ever forget that my friend xx
Love you too Jilly. Not to worry. I am well supported by family, friends, my faith community, and my MPN family (yourself included). I really could not have made it through the last couple of years without the support I have received. I have learned (the hard way) to openly confront these difficulties, acknowledge how they affect me, and ask for help when I need it. Denial of how things are really affecting you can be devastating. This is a lesson learned the hard way back in 2013, when I had another spate of not-so-fun medical events.
The truth is, I am not all that worried about the things coming up in the next year. Much of it is just a bloody big inconvenience. However, I do not take these things lightly. I am carefully planning out my care management and setting priorities based on my assessment of my needs. Compared to heart surgery, brain surgery, and that God-awful Green-Laser PVP/TURP, jaw and knee surgery are not such a big deal. The cataract surgery is something I have been looking forward to since they were first diagnosed.
First up is going to be the surgery to remove the bone tumor on my jaw. I am choosing to prioritize this surgery based on my priorities. The good news is that this is going to be an easier surgery than originally anticipated. The tumor (likely an intraosseous neurofibroma) is not solidly attached to the mandible and should be relatively easy to get out. I am moving up the timing of this surgery to early Summer just to get it over with (Hospital scheduling permitting). I will let you know when this gets scheduled.
The much bigger deal is the knee surgery. I have had prior meniscectomies on both knees. I am already missing 35% of the meniscus in my left knee. The doc just wants to cut out more meniscus, which I do not want to do. I want to look at something more restorative. My goal is to protect my knee, not just kick the problem down the road. I am on the course to needing a knee replacement if I just do another meniscectomy, I want to avoid this at all costs. I am carefully researching all of my options, including clinical trials or paying out-of-pocket for a well researched intervention not approved by my insurance. Current options include: Gel-type injections like SynVisc, stem cell injections like Regenexx, meniscal allograft transplantation, collagen meniscus implant, and a synthetic meniscus implant like Nu Surface. I am doing PT to strengthen the knee and prepare for whatever intervention is to come. I may try the gel-injection to get symptom relief while I sort out my long-term options. I will do nothing until I have researched all of my options and am comfortable I am making the best possible choice. There is no rush to decide. I just have to live with a bit of discomfort until the knee is fixed. I will let you know when I decide what to do and when it is scheduled.
I really am looking forward to doing the cataract surgery. I have previously done Lasik on both eyes and have had a laser repair of the retina twice for retinal tears in the left eye (long time ago). This eye surgery does not scare me. I already have retinal lattice degeneration and a hx of posterior viscous detachment, so anything that would so greatly improve my vision is a great idea. I consulted with the specialists and they all advise I can do this surgery anytime I want, without regard to the other surgeries. I am waiting to decide on this until I have completed a full neuro-ophthalmologic assessment in August. WIll let you know when this gets decided.
So all things considered, I am doing well. There are a few more challenges to overcome is the coming year, but compared to the last couple of years - not such a big deal. I am really looking forward to the coming Summer. COVID19 limitations permitting, I will be volunteering at a Summer Camp for kids with Neurofibromatosis. May also be helping with a Parent Support Group for parents of kids with NF. I am really looking forward to this as I love working with kids. I am planning a trip with my sibs to just go have some fun. My brother is in recovery for treatment for a non-Hodgkin's B-Cell lymphoma , so he could really use some fun too. I am also hoping my granddaughter will be able to make it to the East Coast from Alaska this Summer. She will be coming to see her Mom (My daughter - who has JAK2+ ET and NF1) - so hopefully will get to see both. I have my cabin down by the Shenandoah River open and we are having some great times down there. A good soak in the river on a hot day cures many ills!
I do hope you are also doing as well as can be expected under current circumstances. For both of us and all of our MPN family - hope and prayers for a better year to come.
Thank you for your kind words and well wishes. I am a strong believer in what Adm. William McRaven speaks to when he says "stand up to the bullies" and "find someone to help you paddle." MPNs are horrible bullies. We all need help paddling upstream to confront them. We truly are stronger together.
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