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Myelodysplastic Syndrome, Unspecified, Myelofibroisis
Blood Cancers & Disorders | Last Active: Jul 29, 2018 | Replies (28)Comment receiving replies
Good afternoon, @reibur1951. I read your report on your friend's medical journey over the last 10 months and found similarities with my own experiences. The detailed notes and concerns you offered add up to a treasure of medical information that the many members of Mayo Connect value so highly. I have already learned a lot from you, and I know that others will be glad to understand even better the origins of your friend's illnesses and the hurdles he faces in medical treatment. I hope our discussions here also will help you in managing your friend's interaction with the medical team he relies on.
About myself, briefly, I am a cancer survivor under treatment for high blood pressure and A-fib and an inherited kidney mutation, retired and physically active at age 82. A few years ago, a rare form of leukemia took the life of my 60-year-old brother before his diagnoses were confirmed. Your friend's journey reminded me of the gradual pace of diagnosis and treatment.
Among the major issues you mentioned, the one that struck me first was the genetic mutation affecting the bone marrow's ability to produce red and white corpuscles and platelets. Because that mutation (JAK2V617F) has such a broad range of effects that are difficult to predict, it helped me understand why the medical billing is so broad -- from fibrosis blocking production of blood components, resulting in shortages of those components, and beyond that the excess or oversize components that interfere with blood to cells. It looks like his medical team has a large health insurance platform on which to work as they search to understand what's awry and what treatments are needed.
Likewise, it seemed that the multiple diagnoses of his heart function provided a broad platform to qualify for payment of a range of treatments. In my case, that was a benefit for which I was grateful. Some of the diagnoses were only possible, based on symptoms and test results, only confirmed over time.
My blood pressure was another example. I was treated for over 20 years for marginally high blood pressure. Over that time, a half dozen different doctors ran me through a succession of medications that -- one after another -- failed to work after a few months. Then my HMO set me up 3 years ago with a nephrologist who called in an endocrinologist, and together they determined that I have genetically defective kidneys that were driving potassium out of my body -- a total surprise. A customary and inexpensive medication fixed the problem.
Through all of that, I learned a calming and crucial technique: Cultivate a working relationship with my medical team based on 1) communication, 2) at predicted frequent times, 3) in short messages of substance, 4) designed to show confidence in their work, and 5) encouraging them to treat me as a member of the team. Your report suggests that you and your friend have gained ground along a similar path, and I hope you'll soon be telling us of the next turn in his therapy and his prospects for better days ahead.
Looking forward to hearing more from you. Martin
Replies to "Good afternoon, @reibur1951. I read your report on your friend's medical journey over the last 10..."
Hi @reibur1951. I appreciated receiving your response to my earlier message. I can see from your latest comments that I need to clarify some things I wrote earlier. For example, some of the issues you listed are entirely in the province of your hematologist and others are subject to treatment by your cardiologist. As a general rule, the primary care physician coordinates patient referrals to the specialists on the team -- kind of a gate-keeper to needed medical services.
When I pointed to "multiple diagnoses of his heart function" as "a broad platform to qualify for payment," I was referring to the 9 diagnoses you listed from his May 22-27 stay in the hospital. Eight of them appear to reflect heart problems that are appropriate for a cardiologist to address.
The 9th diagnosis (hypovolemia) might be reserved for treatment by the hematologist who is dealing with low levels of blood components needed to nourish and oxygenate cells around in the body. Is myelofibrosis the main reason for the blood transfusions, in your estimation? If so, does the hematologist give you any prognosis for stabilizing his blood disorders with medications or, alternatively, continued transfusions? When is his next appointment with his primary care physician? What is his hope for the next step in the medical care that can help improve his quality of life?
Martin
primary care entered into picture first - back in Jan 2009 passing off to the hospital ER - it was the Hospital staff who done the referral and not the primary care those years between the cardiologists was the one he seen the most as no other complications/sickness till... he is on his 4th cardiologist (3 three since Oct 2014) because of being in the "Network" and the hospital/Network owns the cardiology practice and seems like there is a "revolving door" for the drs. 🙁
Nov. 2016 again the primary care passed off to the ER and the hospital staff done the referral to the hematologist.... the only thing we have heard from the hematologist there is no cure... as for a prognosis for stabilizing has not been given - he walks in asks a few questions maybe does a little exam if none at all maybe gives the CBC count if prodded keeps reminding of "Iron Overload" because of the frequent transfusion but never says at what level that is hit at (his visit is only monthly) in between its labs only on weekly basis there is no real discussion of the medications - only states giving another on top of one such as as the Prednisone because he complained of not being able to sleep and eat then failing to hear the complaint of the swelling at the time dr visits were about every 2 weeks/month then the Danazol was order but not discussed but between the nurse - only thing was to double check was not on warfarin (which the cardiologist stopped because of the low blood count) but of course it had similar side effects I eventually found out that compound the Aransep side effects which was given every 21 days till Medicare refused to pay for it because the EPO was above 500 that's when he started to become more active, started eating and cravings and Tuesday said he even felt the needle stick for the IV blood transfusion with each week off of the Aransep (Aug 29th) he is up more and more each day wants to get out and go in the car when I go for supplies but still sits in the car 🙁 There has not really ever been any discussion for the next step in my mind.... no options given he just announce this is the next medication - not discussing it punches what ever into his I-phone to the main office and in essence he is at his mercy friend says his guinea pig every once and a while 🙁
The primary care is on Oct 5th he does do more of an exam question about the heart rate/if any chest pain etc and he can see the cardiologist visits/reports He can also see the CBC/blood work done at the Hematologist as it is done through the hospital lab there but I am gathering the Hematologist is not making a routine report to the primary 🙁 I have no idea why the Hematologist is not within the hospital/physician network system and outside of it as a private entity using the hospital facilities
The cardiologist next appointment is in Nov.
All I know is what I have witnessed with the Aransep/Prednisone/Danazol side effects was not "quality of life" not when you prefer to be in bed 90-99% of the time - the Danazol brought on the jerking twitching uncontrolled muscle moment while sleeping and increased with every daiy dosage taken also unsteadiness and balance (which is a side effect of both Aransep & Danazol) but was not a problem before starting the Danazol he even fell in the Drs. office on the 8th of Aug after an Aransep shot and hung on the railing for several minutes all that was done was to take vitals place him in wheel chair and push him off to the scheduled blood transfusion in the hospital I see no notation of this in his patient portal for the Hematologist 🙁 that's when he stopped taking the Danazol and when I had made mentioned I noticed when he napped/slept he was moving uncontrollably jerking, twitching
Each seems to keep within their own realm of expertise and do not consult - only for what they can have ready access of through their "Network "
I have more faith in the new Cardiologist (he has been there for a year or more I think) - the one he had from Dec 2014 just up and left early this year 🙁 The primary came to town in 1968 for a trial run ended up staying and when this Affordable care came into full force sold his practice/building out to the hospital/network and his long time partner decided to retire 🙁 how l ong he will hang in is undetermined - probably will be health the deciding factor unless he drops dead while working he is well into the retirement years but won't give up fully tho has cut back on hours
I insist on the monthly visits with him since he does catch things... he does question and he does listen to one's concerns.....
Won't allow me to edit By way The cardiologist next appointment is in Nov monitors and controls the Furosemide - the primary does keep a constant check on the swelling of the feet the last several times the Hematologists has never even bother (nor was he concerned with the weight gain back in May of 30+ pounds in less the three weeks)
The Hosptial/Network is regional as well as national the floor doctors for the hospital are rotate in from St Louis/ Cleveland and elsewhere... The Hematologist is regional to the northern area of our state only from what I see and was told was #1 and we would have to get completely outside the area of which we were not on 2nd opinion only a different practice that was connected to the clinic that done the genetic testing for the JAK2
@reibur1951, Editing is allowed on Mayo Connect as follows: 1) While preparing a "reply" for posting, typing in a reply box with "@ Add Media" at the top-left, you can edit by deleting and inserting characters, tabs, and paragraph marks (carriage returns -- including double-spacing).
After posting a reply, you will see a "Manage" button at bottom-left. Click on that, then on "Edit". The posting comes up in editing style so you can edit as before posting. However, don't linger while editing this way, because after 5 minutes editing is locked out.
I try to avoid the short deadlines by composing my postings off-line -- in Notebook, for instance -- then copying the message, opening a "reply" box, and pasting the message into it. That usually leaves me enough time to edit the pasted/posted material!
@reibur1951, I noticed that I didn't include some tactics that I use to develop teamwork with my medical professionals. First, it is wise for a patient to give formal, legal notice to medical organizations of the person or persons he authorizes to make medical decisions for him if he is unable to do so at any time. Second, I have found that my input is much less effective if I give it as my conclusions or directives; it almost always gets a better reception if I ask good questions instead. Third, I avoid making decisions about taking or dropping medications without first talking to a doctor about why I would like to make the change and whether it would be the smart thing to do. A lot of medications cause problems if they are stopped abruptly rather than phased down over time; others should be adjusted only after lab tests or special treatments show the adjustment is needed. I have found that some of my "side effects" aren't that at all, but instead are troublesome symptoms that come as a surprise, forcing my medical team to rethink my treatment plan. Finally, I always ask whether my treatment allows for work on finding a cure, not just managing my symptoms; but when it became clear, for example, that my high blood pressure can't be cured, I looked for all the advice I can get on changing my life-style, my diet, my exercise regimen, etc. in coordination with my medical treatment for a kidney condition I inherited.
I hope you can find something helpful in my experiences. Martin
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Thank you for the insight of JAK2V617F it was never explained ! Just mentioned that had tested positive for it. and first thing out of mouth was he wanted him on Jakafi® (ruxolitinib) no explantion as to why side effects etc. only that it was expensive - needless to say friend refused I did do some research on the drug but tossed it since he did not take it
Oh I did "ask" for a copy of the testing for the JAK2 which i am glad i did - as I don't think i seen it within the patient portal downloads avaiable from the hospital I will e check as I need to verify that I have pulled everything possible down but i need some desk space and some ink for printing I have 1 full 3" notebook and a 2nd started with everything from Open heart in 2009 to date even down to the blood transfusions..
I am sorry to say that there has been no more testing or diagnoising done or being done or scheduled in the future only that which was needed for the Arnaseo & Danazol - why I am not sure
Problem is Dr talks in analogies - of filling up the gas tank; replacing a car with a new or used on etc.
So far there is only the hemetalogist involved ing the care for the blood disoder disease; your statement of "Likewise, it seemed that the multiple diagnoses of his heart function provided a broad platform to qualify for payment of a range of treatments" The only ones I see the Hemeatologist using is the ones specific for him - tho I note on the summaries donwloded from HOspital, primary and possibly cardiologist referes to them all
the primary care is just basically a standby tho I have insisted on monthly visits to hopefully prevent the occurance of May again as he was the one who raised the concern of the increased heart rate and swelling.
the cardiologist is working only with the heart problems
The Cardiologist/primary care are within the same physician/hospital network system
The hematologist is a network soley of their own just using hospital facilities as a satalite office It does not seem that he is confering on a regular basis with the others - I do know he possily snt a letter of diagnoise in December to only the primary care - but i do not see it mention or available in the Patient portal
I was always of the opinon treatment was to do no more harm than already existed... but with the attidue of side effects be dam and the small possible benefit from the out weighs any or all side effects that occur is beyond my compherinson besides being told that i do not give a dam only concerned about the cost... well if not approve for help... if Medicare will not pay...