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reibur1951
@reibur1951

Posts: 38
Joined: Sep 21, 2017

Myelodysplastic Syndrome, Unspecified, Myelofibroisis

Posted by @reibur1951, Sep 21, 2017

+++++++++++++++++++++++++++++++++++++++++
I Know this is a repost Posted by @reibur, 1 day ago but I can’t get into my account and no one has responded and I wanted to add more and some questions

Medical classification for billing is
Melodysplastic Syndrome, Unspecified, Myelofibroisis & Other Pancytopenia

My Friend is 83 years old

Notation is he is A-Fib and has been Since Feb. 2009. With Aortic Valve replacement & Bypass why give him something that causes irregular heart rate/plus and possible edema and congestive heart as I have seen listed for Aransep in lists of side effects.

On Nov. 7 2016 he was admitted into hospital with a Hematologin/blood count of 5.8 had series of tests done while in – It has bounced to a low of 5.5 o once since with some with in the 6.6-9 range and rest been 7.2-7.7

He had bone marrow test and something about being fibrostic. We were or at an understanding that enough sample was not or could not be obtained. Also genetic testing came back as JAK2V617F positive.

He/we was told that there this was basically said it was not Cancer just old age deteration of the Bone marrow and it becoming fibrostic and drying up so to speak. The doctor talked in analogies of new/used cars going to gas station filling up pas tank etc. never anything clear cut that was understandable.

He has had 27 units of blood since Nov. 7 with no adverse side effects keeps harping on Iron Overload – but does not explant it full and at what point it occurs ect.

On Jan 31 he started Aransep shots and had 10 on Aug. 29th Medicare refused to pay for that one as EPO was above 500 at 550 but the next week the blood test showed 234.41 – He began feeling better more alert, wanting to get up and move about more and appetite back – before this all he wanted to do was stay in bed, it was hard to get him to eat The side effects of the medication were never discussed with him or me in fact when i asked a nurse I was told there was nothing to worry about sure….

In March he complained to dr. about not being able to sleep & loss of appetite he immediately put him on prednisone on Mar 28th starting it the next morning on Mar 29th 2017 He did try to deny this but he question was WHY NOT? so was coerced into it – the result became instantly in the form of feet swelling and water retention
his feet began to instantly swell on dr. visit of 4/25/2017 they were almost double and by that evening they were almost 3 times normal size and he refused to take the prednisone after that he complained during April & may of sweet swelling but the hematologist ignored him/me also during this time his breathing became rattled, he was coughing and coughing up mucus which continued to increase On the 16th his feet was so swollen that he could not get his shoes on and he again complained about the swelling – the hematologist looked at his feet agreed they were swollen and after his allotted 15 minutes started to walk out I asked him is he was going to give him anything for the swelling he replied i guess some lasix – 20 mg. he prescribed 20mg which in my opinion was to late!

Weight gain while on the prednisone was extremely raid and high
The weight comparisons are: Nov 16 he was 168.2 – he hit a low of 150.2 while on Aransep and back up to 164 on sept 5th

During this time Dr. prescribed danazol 200.0 mg 2 times a day on 05/09/2017 BUT he refused to discuss the side effects and my friend refused to take it with the problems that were occuring with the swelling.

On May 22 – he had his regular check up with primary care Dr. his feet were very swollen – and his A-fib was gong into high gear

So he gained 32.6 pounds because of the fluid retention caused by the prednisione.! And the hematologist was none concerned with it – and he still was not eating and had not appetite.

The primary Dr. Office called sometime a little after noon and said if the A-fib did not settle down by late after noon to take him to ER – He did not wait – he was in vehicle ready to go

His heart medication had to be changed from diltiaZEM (diltiaZEM 120 mg/24 hours oral capsule, extended release) 3 Capsule By Mouth once a day. to sotalol (sotalol 80 mg oral tablet) 2x’s a day

He spent from May 22-May 27 in the hospital final heart problems were described as –
Final: Paroxysmal atrial fibrillation
Final: Acute on chronic diastolic (congestive) heart failure
Final: Hypovolemia
Final: Other secondary pulmonary hypertension
Final: Cardiomyopathy, unspecified
Final: Hypertensive heart disease with heart failure
Final: Unspecified atrial flutter
Final: Other specified conduction disorders
Final: Atrial premature depolarization

His heart conditions before this episode with the predisone & Arnasep were simple listed as
AF (paroxysmal atrial fibrillation)
Aortic valve regurgitation NOS
CORONARY ATHEROSCLEROSIS

On May 30th 2017 he consented on staring the Danazol after being pressured into it – no side affects were explained or offered and he stopped taking in on Aug 9th – I had noticed while checking on him during the time he was taking it in hes sleep he began to have uncontrollable jerking and twitching his arms flying around and legs moving while sleeping- this has subsided down o near nothing now

On 08/29/2017 he again suggested a “expensive medication” REVLIMID 5.0 mg and offering no counseling on side effects finaly on 09/07/2017 he coerced him into taking it and we went the the preliminary of filing of help but continued to try to side side effects and talked to his son-in-law who is a long time EMT and works in the blood lab of another local hospital his question was why give it to some one with A-FIB He refused to take it last week when they set up a training session & to sign consent papers

He is Hypothyroid diagnosed while in hospital in May – just was able to ake and tolerated the medication after Aug 29th – he is Hyperlipidemia but has not tolerated the cholesterol medications so the heart dr. has not forced the issue nor the primary care dr.

Of the Revlimid side effects? These are the ones stand out the most
Anemia/Low red blood cell or white blood cell counts – – fighting the Low Red blood cell count
Swelling in the arms and legs (peripheral edema) – already fighting feet & legs still swelling on 40mg of furosemide daily
irregular heartbeat – already battling to keep the A-fib under control
besides the host of others listed
many he is already experienced with the Aransep & Danazol which has not fully worn out of his system
And when coercing him into taking it he told me I did not give a dam and and side affects be dam that they outweighed the benefit – Does it when he has and being treated for A-fib and other heart problems, is fighting the low blood count already – experienced the numerous side effects while taking the Aransep & Danazol
Where do we turn what do we do How does he stand up for his rights?????
Are there any alternatives to this besides these HORRIBLE drugs and side effects?
Quality of life is not side effects be dam as doctor says and the benefits out way them we have seen no benefits… they have not lessen the need for blood transfusions

Since being off of he Aransep he has been up more and doing some things still seeing he effects of this HORRID medicine and not sure if the effects from it will subside over time or itf the dmae has been done…

We need some answers we can understand… answers that we do not have…. tried a second opinion if you call it that as did not testing of his own, we do not know what the Dr(s) sent to him he approved of what was being done only thing repeated is was not curable….

REPLY

Hi @reibur1951, welcome to Connect. Interpreting clinical findings and lab reports can be challenging. It often requires the explanation of a clinician, but it sounds like your friend’s doctor is not able to explain them in terms that are meaningful or helpful. Your friend must be grateful to have your support, especially since he is so ill and fatigued.

Have you considered getting a third opinion at Mayo Clinic? You can contact our appointment offices at one of our 3 campuses http://mayocl.in/1mtmR63. They will review all the test results, medical history and clinical findings, and discuss with your friend if there are options to consider, and whether a trip to Mayo Clinic is warranted.

@JustinMcClanahan

Hi @reibur1951, welcome to Connect. Interpreting clinical findings and lab reports can be challenging. It often requires the explanation of a clinician, but it sounds like your friend’s doctor is not able to explain them in terms that are meaningful or helpful. Your friend must be grateful to have your support, especially since he is so ill and fatigued.

Have you considered getting a third opinion at Mayo Clinic? You can contact our appointment offices at one of our 3 campuses http://mayocl.in/1mtmR63. They will review all the test results, medical history and clinical findings, and discuss with your friend if there are options to consider, and whether a trip to Mayo Clinic is warranted.

Jump to this post

I have – even considered just driving out if could afford have just about drain savings with his medical bills & having to buy a used vechile of which we were not told truth about it has some big issues – I have 2 3″ notebooks files with everything I could down load of the hospital , drs’ sites – I need to re-check and see I got every thing and short on black ink

Right now we have to get past another hurtle – his son and health issues found last thrus – awaiting a CT scan on him we may be headed for IU Medical Center with him

I wrote this to one of the moderators privately and it was suggested that I post it here

I guesss its dam if you do and dam if you don’t

But what I have seen since the 29th of Jan to Aug 29th when Medicare refused to pay for the shot – is not QUALITY of life

All he has wanted to do is lay in bed – cat nap and sleep – he would barely eat – he did not care to take baths unless necessary – he did not want to go anywhere only out for dr. visits – I had to force the issue for him to go with me to grocery etc. and then he sat in the car – but it was better than being home along out in country 10-15 miles from the nearest ambulance service and then if called it takes them at least a half hour to get to a person.

I see GREAT changes and all are side effects of the Aransep – followed by the introduction of prednisone which was on for a 25 whole days because as I said it was instant swelling of feet & dr. would not listen – day came home from dr visit feet was noticicable 2x’s swollen he was walking on the heels of his shoes (very dangerous) and by evening they were almost 4x’s

then when he finally started the Danazol I seen further changes – like I said the jerking, twitching uncontrolled movements while sleeping & you knew he was not getting proper sleep if any – it was the only NEW medication since the hospitalization & was not doing it in hospital or before the Danazol was introduced – so immediate stoppage of it and the jerking, twitching immediately started to subside besides the increased unsteadiness and balance

Like I said I do not know if all will subside or not or if any of the damage is re-versiable. I am hoping and praying

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

@predictable

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

Jump to this post

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…

@predictable

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

Jump to this post

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

@predictable

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

Jump to this post

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…..

@predictable

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

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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

@predictable

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

Jump to this post

@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!

@predictable

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

Jump to this post

@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

There is a durable power of attorney, medical power of attorney and a DNA/refusing extended measures directive – so far have no used it only when he tells the nurse that I can sign the release forms to get him out of the hospital other wise he has signed/in and out for all his care

For the Arnasep – we were given no time to research side effects, – he was not asked to sign any papers – nor I was I for him – The side effects were not discussed after the 1st shot I was given was the only time I had the opportunity to ask if any side effects and that was of a nurse only and what to what for I was told there was nothing to worry about B_S_ I came home and started to read the different drug sites including Mayos – found the side effects which top on the list were edma and congestive heart… on down the list was the irregular heart rate etc,…. It was Medicare who stopped this shot not us – they refused to pay for it –

The predisone again no side effects were discussed but I knew some of them as I had taken the drug myself for posion ivy years ago – he refused it at first and and after wards was asked Why not and was semi cocoersed into taking it – he took only less than 25 tablets and by the time he stopped taking it – he was full of fluid, his feet was just about 4 times the size they should be by the evening after we seen the dr. Apr 25th – each office visit during this 25 days and even after he kept says this fee was swelling there was no denying it as he could not even wear his shoes properly he was walking on the heels of them the majority of the time – the dr did not even look at his feet etc. till in reality it was to late – he started it on the 29th of Mar quit thenext morning April 26th after dr visit he refused to look at feet weight was
Aprl 4th 150.8
Apr 25 160.4
May 9 171.2
May 16 178
May 22 – 184.6 a one of the t primary care follow-up visit from Nov 16th hospital stay
May 30 180 (he was dismissed on the 27th from hospital with hypervolemia congestive heart failure etc.

The Danazol was prescribed I bought but he refused to take until pressured into it on the 30th – BUT again no side effects had been discussed – it was done while he had an Aransep shot on May 16th and he/I was only asked to confirm he was not on warfarin the discussion was between him and the nurse and not him – I had to come home to try to find side effects – and could not find clear concise one ones until after he he was off of it for several weeks – BUT he had fallen once at home day before – then the next day in the drs office as I describe above and then the jerking twitching uncontrolled muscle movement I witnessed while he slept and nap – he was not doing this in the hospital and right after he came home – I can not say when it started it was slow progression day by day he was only on it 2 months and had bought the 3rs month supply already which is sitting here unused at $203.15 with a coupon (I personally spent my own money and bought all three prescriptions which the dr does not know and I will not give him the satisfaction of knowing since he told me I do not give a dam) he slowly has come out of this jerking twitching but still somewhat unsteady on his feet

The Relvmid (sp) he never started taking – I asked what the wide effects were – did not state any – only that I researched them yet he refused to discuss them said side effects be dam he refused it the day of the teaching class for it and to sign papers of which he refused to sign

The dr just tells him he is taking this — punches whatever into his I-phone and never discusses any of the medication with him!

Aransep

Okay to reiterate –

1 he was not told of the side effects –

2 he did not sign any relase forms etc. if they had to be signed

3 It was Medicare who refused to pay for the shot Aug 29th when typed into the computer because EPO was above 500 on Blood test taked on Aug 22 and after thought test was taken on Sept 5th from a vial of blood reserved for type/cross matching incase of transfusion need – no testing has been done since – has refused 3 shots on days on CBC blood test day only

He has exhibited or had any marked with an “X” or a “?” He has asked if something’s he experience are because of it – I told he from what I read it “could be” giving him the opportunity to question himself – I never discussed my finding with the dr at anytime – on this drug

In Summary Common side effects of Aranesp include:
hypertension and
X peripheral edema.

Other side effects include:
X congestive heart failure and (May 22-27 hopsital diagnosis )
X hypervolemia. (May 22-27 hopsital diagnosis )

See link for a comprehensive list of adverse effects.
http://www.drugs.com/sfx/aranesp-side-effects.html

Danazol Side Effects

AgainI reiterate

1) he was not told of the side effects –

2) All was asked that is he was on Warfrin yet –
this is not a noted medication in his record – and noted as being stopped in Dec. 2016 by the cardiologist

3) It was prescribed on about and was purchased on May 9th because it had to be ordered in on but he refused to take it because of how he was feeling – the swelling he was having in his feet etc. and not being told of any of the side effects

4) was started on May 30th because the Dr still was insisting on him taking it – Yet no side effects were discussed Drs. reasoning on medication is the benefits out weighted the side effects DOES IT?????

5) Was stopped on Aug 9th – because of his unsteadness on his feet/the falling in the Dr.s off AUg 8th – (which as far as I know is not documented in any form) and because of the jerking twitching uncontroled muscle movement during sleep

All marked with an “X” or “?” he has expereinced and some are also side effects of the Aransep shot – which only compounds the problems double

For the Consumer

Applies to danazol: oral capsule

Along with its needed effects, danazol may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur while taking danazol:

For both females and malesLess common
Acne
dark-colored urine
increased oiliness of the hair or skin
muscle cramps or spasms
rapid weight gain
X unusual tiredness or weakness

Rare
Bleeding gums
bloating, pain, or tenderness of the abdomen or stomach
blood in the urine
burning, numbness, pain, or tingling in all fingers except the smallest finger
X changes in vision
chest pain
X chills
complete or partial numbness or weakness on one side of body
X cough
coughing up blood
diarrhea
difficulty with speaking
difficulty with swallowing
discharge from the nipple
eye pain
? fast heartbeat (has diagnossed A-fib since 2009)
fever
X headache
hives or other skin rash
joint pain
light-colored stools
X loss of appetite (continuing)
X loss of muscle coordination
more frequent nosebleeds
muscle aches
nausea
purple- or red-colored, or other spots on the body or inside the mouth or nose
X restlessness
X shortness of breath
sore throat
X sweating
tingling, numbness, or weakness in the legs, which may move upward to the arms, trunk, or face
unusual bruising or bleeding
X unusual tiredness, weakness, or general feeling of illness
vomiting
yellow eyes or skin

For females onlyMore common
Decrease in the breast size
irregular menstrual periods
weight gain
Rare
Enlarged clitoris
hoarseness or deepening of voice
unnatural hair growth

For males onlyRare
Changes in semen
decrease in the size of the testicles

Some side effects of danazol may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

For both females and malesLess common
Flushing or redness of the skin
X mood or mental changes
? nervousness
Rare
Increased sensitivity of the skin to sunlight

For females onlyLess common
Burning, dryness, or itching of the vagina
vaginal bleeding
For Healthcare Professionals
Applies to danazol: compounding powder, oral capsule

Cardiovascular
Cardiovascular side effects have included
X edema and (diagnoises with May 22-27 before started taking)
X congestive heart failure.[Ref](diagnoises with May 22-27 before started taking)

Endocrine
Endocrine side effects have included the inhibition of estrogen synthesis, resulting in flushing, sweating, vaginal dryness and irritation, and reduction in breast size. During administration of danazol, endogenous testosterone synthesis and release may be inhibited through feedback inhibition of pituitary luteinizing hormone (LH). Large doses of danazol may suppress spermatogenesis through inhibition of pituitary follicle stimulating hormone (FSH). Danazol may decrease levels of thyroxine-binding globulin, resulting in decreased total T4 serum levels and increased resin uptake of T3 and T4. Free thyroid hormone levels remain unchanged and there is no clinical evidence of thyroid dysfunction.[Ref]

Gastrointestinal
Gastrointestinal side effects have included nausea and vomiting. Rare cases of pancreatitis have been reported.[Ref]

Genitourinary
Genitourinary side effects have included oligospermia and decreased ejaculatory volume. Elderly male patients may experience prostatic enlargement resulting in urinary obstruction. Priapism and excessive stimulation may develop.

In female patients, the use of danazol may result in virilization including deepening voice, hirsutism, acne, clitomegaly (rare), and menstrual abnormalities. Discontinuation of medication at signs of mild virilization may prevent irreversible virilization.

Alterations in libido may occur (increased/decreased).[Ref]

Hematologic
Hematologic side effects have included thromboembolic and thrombophlebotic events (including sagittal sinus thrombosis), some resulting in fatal strokes, and increased red cell production.[Ref]

Metabolic
Metabolic side effects have included significant increases in low density lipoproteins (LDL) and decreases in high density lipoproteins (HDL). Decreased glucose tolerance requiring adjustments in hyperglycemic control has occurred.[Ref]

Other
Other side effects in female patients have included virilization, including deepening voice, hirsutism, acne, clitomegaly (rare), and menstrual abnormalities, due the androgenic activity of danazol. Discontinuation of danazol at signs of mild virilization may prevent irreversible virilization. Reduction in breast size may occur due to decreased estrogen synthesis.[Ref]

Renal
Renal side effects have included the retention of nitrogen, sodium, potassium, chloride, water and phosphorus, and decreased urinary excretion of calcium.[Ref]

Oncologic
Oncologic side effects have included rare cases of hepatic neoplasms following prolonged use.[Ref]

Hepatic
Hepatic side effects have included life-threatening peliosis hepatitis and benign hepatic adenoma following prolonged danazol administration. Rare cases of hepatic neoplasms following prolonged use have been reported. Danazol can exacerbate acute intermittent porphyria. Serum transaminase levels may be increased.[Ref]

http://www.drugs.com/sfx/danazol-side-effects.html

@reibur1951

Danazol Side Effects

AgainI reiterate

1) he was not told of the side effects –

2) All was asked that is he was on Warfrin yet –
this is not a noted medication in his record – and noted as being stopped in Dec. 2016 by the cardiologist

3) It was prescribed on about and was purchased on May 9th because it had to be ordered in on but he refused to take it because of how he was feeling – the swelling he was having in his feet etc. and not being told of any of the side effects

4) was started on May 30th because the Dr still was insisting on him taking it – Yet no side effects were discussed Drs. reasoning on medication is the benefits out weighted the side effects DOES IT?????

5) Was stopped on Aug 9th – because of his unsteadness on his feet/the falling in the Dr.s off AUg 8th – (which as far as I know is not documented in any form) and because of the jerking twitching uncontroled muscle movement during sleep

All marked with an “X” or “?” he has expereinced and some are also side effects of the Aransep shot – which only compounds the problems double

For the Consumer

Applies to danazol: oral capsule

Along with its needed effects, danazol may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur while taking danazol:

For both females and malesLess common
Acne
dark-colored urine
increased oiliness of the hair or skin
muscle cramps or spasms
rapid weight gain
X unusual tiredness or weakness

Rare
Bleeding gums
bloating, pain, or tenderness of the abdomen or stomach
blood in the urine
burning, numbness, pain, or tingling in all fingers except the smallest finger
X changes in vision
chest pain
X chills
complete or partial numbness or weakness on one side of body
X cough
coughing up blood
diarrhea
difficulty with speaking
difficulty with swallowing
discharge from the nipple
eye pain
? fast heartbeat (has diagnossed A-fib since 2009)
fever
X headache
hives or other skin rash
joint pain
light-colored stools
X loss of appetite (continuing)
X loss of muscle coordination
more frequent nosebleeds
muscle aches
nausea
purple- or red-colored, or other spots on the body or inside the mouth or nose
X restlessness
X shortness of breath
sore throat
X sweating
tingling, numbness, or weakness in the legs, which may move upward to the arms, trunk, or face
unusual bruising or bleeding
X unusual tiredness, weakness, or general feeling of illness
vomiting
yellow eyes or skin

For females onlyMore common
Decrease in the breast size
irregular menstrual periods
weight gain
Rare
Enlarged clitoris
hoarseness or deepening of voice
unnatural hair growth

For males onlyRare
Changes in semen
decrease in the size of the testicles

Some side effects of danazol may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

For both females and malesLess common
Flushing or redness of the skin
X mood or mental changes
? nervousness
Rare
Increased sensitivity of the skin to sunlight

For females onlyLess common
Burning, dryness, or itching of the vagina
vaginal bleeding
For Healthcare Professionals
Applies to danazol: compounding powder, oral capsule

Cardiovascular
Cardiovascular side effects have included
X edema and (diagnoises with May 22-27 before started taking)
X congestive heart failure.[Ref](diagnoises with May 22-27 before started taking)

Endocrine
Endocrine side effects have included the inhibition of estrogen synthesis, resulting in flushing, sweating, vaginal dryness and irritation, and reduction in breast size. During administration of danazol, endogenous testosterone synthesis and release may be inhibited through feedback inhibition of pituitary luteinizing hormone (LH). Large doses of danazol may suppress spermatogenesis through inhibition of pituitary follicle stimulating hormone (FSH). Danazol may decrease levels of thyroxine-binding globulin, resulting in decreased total T4 serum levels and increased resin uptake of T3 and T4. Free thyroid hormone levels remain unchanged and there is no clinical evidence of thyroid dysfunction.[Ref]

Gastrointestinal
Gastrointestinal side effects have included nausea and vomiting. Rare cases of pancreatitis have been reported.[Ref]

Genitourinary
Genitourinary side effects have included oligospermia and decreased ejaculatory volume. Elderly male patients may experience prostatic enlargement resulting in urinary obstruction. Priapism and excessive stimulation may develop.

In female patients, the use of danazol may result in virilization including deepening voice, hirsutism, acne, clitomegaly (rare), and menstrual abnormalities. Discontinuation of medication at signs of mild virilization may prevent irreversible virilization.

Alterations in libido may occur (increased/decreased).[Ref]

Hematologic
Hematologic side effects have included thromboembolic and thrombophlebotic events (including sagittal sinus thrombosis), some resulting in fatal strokes, and increased red cell production.[Ref]

Metabolic
Metabolic side effects have included significant increases in low density lipoproteins (LDL) and decreases in high density lipoproteins (HDL). Decreased glucose tolerance requiring adjustments in hyperglycemic control has occurred.[Ref]

Other
Other side effects in female patients have included virilization, including deepening voice, hirsutism, acne, clitomegaly (rare), and menstrual abnormalities, due the androgenic activity of danazol. Discontinuation of danazol at signs of mild virilization may prevent irreversible virilization. Reduction in breast size may occur due to decreased estrogen synthesis.[Ref]

Renal
Renal side effects have included the retention of nitrogen, sodium, potassium, chloride, water and phosphorus, and decreased urinary excretion of calcium.[Ref]

Oncologic
Oncologic side effects have included rare cases of hepatic neoplasms following prolonged use.[Ref]

Hepatic
Hepatic side effects have included life-threatening peliosis hepatitis and benign hepatic adenoma following prolonged danazol administration. Rare cases of hepatic neoplasms following prolonged use have been reported. Danazol can exacerbate acute intermittent porphyria. Serum transaminase levels may be increased.[Ref]

http://www.drugs.com/sfx/danazol-side-effects.html

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@reibur1951, you don’t have to type up all of those “side effects” on the Connect web site. You could just type in the Internet address for the information source from which you drew the information.

None of us who are members of Mayo Connect is a doctor. We don’t have credentials for either making diagnoses of a patient or challenging a doctor’s treatment decisions.

But we’re always gratified when a new member joins us, looking for somebody to communicate with and anxious to see how others with similar medical problems handle them and get health care. Have you picked up anything from your discussion with me that you found has eased the burden of caring for your friend? Martin

Hello @reibur1951, I’m so impressed with the quality of assistance you are giving your friend. I’m sure he must appreciate your efforts.

As I was not familiar with this disorder, I did some research and came up with some information from the NIH website, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2785865/. As I read this article (and I hope you do as well) you will see that treatments for this disorder can be difficult to determine and have to be done on a case by case basis. I see that @predictable, has provided you with many good ideas and suggestions for this situation from his own experience.

Unfortunately, we are not medical professionals and therefore cannot diagnose or help you with a treatment plan. Have you and your friend considered looking into Palliative Care? Here is a Mayo Clinic website that discusses this care for people with serious illnesses, http://www.mayoclinic.org/tests-procedures/palliative-care/home/ovc-20200491. As you can see, Palliative Care is not the same as Hospice Care and can be used along with other curative treatments. This might be a good option for your friend. As the article states, “Palliative care is provided by a team of doctors, nurses and other specially trained people. They work with you, your family and your other doctors to provide an extra layer of support that complements your ongoing care.” It sounds as if this type of support would be most helpful. I would encourage you to see if there are Palliative Care professionals in your area.

Please continue to post as you feel the need. Mayo Connect is here to be a “sounding board” if you will and to support you along the journey of illness.

Teresa

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