Author Topic: Frustration at lack of local Hospital action  (Read 865 times)

Bennet3

  • *
  • Posts: 2
  • Reason for joining: Patient
  • Diagnosed: 16/03/21
Frustration at lack of local Hospital action
« on: July 02, 2021, 04:50:17 pm »
Hi Can any one offer advice on how to get the local hospital motivated to do something about treatment?
Brief timeline :-
Beginning of Feb. finally got GP to accept that Racoon eyes was not a result of sinusitis
beginning of March test results didn't find Bence Jones protein but found BNP
Middle of March ECG and EchoCardigram Cardiac Amyloid diagnosed
3rd week of March had a heart MRI by pushing for a cancellation ahead of 6-8  week waiting list
last week in April Nuclear Scan
Middle of May admitted to Cardo Ward with water overload for a week losing 3 stone in water after intravenous infusions
Liver ultrasound whilst in hospital
Letter from Cardio Consultant to Haematology resulted in a first consultant meeting middle of July
A week ago re-admit to Cardio ward for water overload -same treatment
2 days later Haematology on call Registrar came to see me at Cardio Consultants insistence
took blood sample and arranged a Skeletal Survey later that day ,after fight with MRI department
booked MRI whole spine and pelvis for next week instead of 3rd week in July
he carried out a Bone marrow biopsy on the Cardio ward followed by bad night and plunging blood pressure
Next day I had to refuse to be discharged until I saw a Consultant Haematoligist for a consultation and a treatment plan
Saw the on call Consultant to be informed there wouldn't be any plan until the results came back ,Bone Marrow Biopsy had been sent to Newcastle and could take 3 weeks and then there would be a town hall meeting to decide what further tests are needed and that it wasn't certain that I had Amyloidosis despite Cardio's diagnosis
MRI results could also take 3 weeks !
So I was discharged from Cardio that night
Liver MRI next day ( yesterday ) as an outpatient  and no further forward to treatment

If any one has any ideas on buttons to push or ways to circumvent this intransigence and Obfuscation I would be grateful



Miriam Vered

  • Administrator
  • *****
  • Posts: 560
Re: Frustration at lack of local Hospital action
« Reply #1 on: July 02, 2021, 05:14:19 pm »
I'm sorry to hear what a difficult time you've been having. You can ask any of your doctors to refer you to the National Amyloidosis Centre. The GP, cardiologist or haematologist can make the referral. You don't need to have a definite diagnosis of amyloidosis to be referred. The suspicion of cardiac amyloidosis raised by the cardiologists is sufficient to warrant a referral.
Information for referring physicians is available here -https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre/information-referring-physicians


Good luck.

Gary

  • *
  • Posts: 37
  • Married to Joanne. Have a daughter Jessica.
  • Reason for joining: AL amyloidosis patient
  • Diagnosed: March 2007
Re: Frustration at lack of local Hospital action
« Reply #2 on: July 02, 2021, 05:22:57 pm »
Hi
I hear what you are saying and things don’t get any better even after diagnosis.
It is a slow process at the local hospitals trying to get diagnosed as they know nothing about Amyloidosis.
Even after diagnosis it is very very hard to get any treatment or tests done to check for organ failures and associated problems. 
I’ve had AL systemic Amyloidosis for 14 yrs now and believe me it is an uphill struggle constantly.
Good luck.
Gary.

AdaS

  • *
  • Posts: 2
  • Reason for joining: AL amyloidosis patient
  • Diagnosed: Dec 2017
Re: Frustration at lack of local Hospital action
« Reply #3 on: July 05, 2021, 10:23:19 pm »
Hello,
  Where in the country do you live? I think I was lucky in the autumn of 2018 to have had a GP who was concerned enough about high protein levels in urine during an annual review to send the sample to my local hospital which is a teaching hospital with a good reputation. After around 3weeks of ruling out other possibilities they organised a kidney and bone marrow biopsy on the same day, December 12th, and on Dec 23rd I got my diagnosis ( not the Christmas present I wanted). At the same meeting my consultant said his department was very much aware of Amyloidosis and was referring me immediately to the Royal Free. I got there in the middle of January2019 and as other posters have said, immediately felt reassured that there were some great knowledgeable people there with answers and plans.
    Between December 2018 and January 2019 my light chains almost doubled,
so speed in getting treatment is vital. Urge your GP to refer you and if they or your local hospital are still hesitant, find your nearest teaching hospital.   
      I get more tired than I used to but my light chains have been in normal range for over a year ( thank you daratumabub), and I generally enjoy life so things can get better. Sending all best wishes. xxx

Bennet3

  • *
  • Posts: 2
  • Reason for joining: Patient
  • Diagnosed: 16/03/21
Re: Frustration at lack of local Hospital action
« Reply #4 on: July 28, 2021, 06:17:02 pm »
Hi Thanks for the helpful advice--it has been a hectic few weeks
 
I finally saw a Consultant who understood Amyloidosis and who fast tracked the process as  time has been of the essence


In the intervening time from the first tests in Feb it has progressed significantly  and now is at level 3A /B
if anyone could explain levels I would be grateful.

I had to decide to stop Beta blockers and go for Chemo treatment -the Heart Consultant was not happy
and advised me not too without considering that it could spread to other organs

but by applying Occam's Razor it meant that Chemo was the way to go and to accept possible heart consequences

So I have now had 2nd of weekly treatment in the first cycle of 4   3rd treatment on Friday
and hopefully will follow up with the planned for another further 5 cycles

At last a target to aim for instead of a feeling of helplessness and stasis



Miriam Vered

  • Administrator
  • *****
  • Posts: 560
Re: Frustration at lack of local Hospital action
« Reply #5 on: July 28, 2021, 08:08:31 pm »
Might your doctors perhaps be referring to cardiac stage 3a/b? Doctors can use a "cardiac staging" system to assess how AL amyloidosis deposits have affected the heart. Cardiac staging is based on the results of specialist blood tests – NT-proBNP and troponin.
In stage 1 neither NT-proBNP nor troponin are raised
In stage 2 either NT-proBNP or troponin is raised
In stage 3 both NT-proBNP and troponin are raised;  NT-proBNP is higher in stage 3b than in 3a.
In combination with results of other heart tests, like echocardiography and cardiac MRI, staging can help doctors in assessing individual patient risk and choosing appropriate therapy. As you've noted, stage 3 does mean that your disease has progressed; it's good that you're starting treatment and I hope it will soon have good effect. 

Birchman

  • *
  • Posts: 5
  • Reason for joining: Patient with AL Amyloidosis
  • Diagnosed: Initial diagnosis March 2021 - AL diagnosis June 2021
Re: Frustration at lack of local Hospital action
« Reply #6 on: August 18, 2021, 09:00:07 pm »
I too had a problem motivating the local hospital. I knew that the Cardiac consultant (and possibly my GP) had received a letter from the Royal Free. The problem I had was that the consultant wasn't contacting a haematologist. Until that was done, the Royal Free wouldn't move forward. I attacked it in three directions! I asked the very efficient HF nurses to chase the consultant. I asked my GP to do something, but they said they couldn't do anything. Lastly, I contacted the Royal Free and explained my problem. A senior haematologist said he would contact my local hospital to get things moving.

Between them something has happened! Earlier today, I was asked to go in tomorrow for a few days to get a bone marrow biopsy, CT scan and other tests. A haemotologist, with experience of amyloidosis has been appointed and details of treatment planned!

Here is my very brief timeline:
- January to August 2020 - Suffering from Pulmonary and Peripheral Edema. I thought the Pulmonary Edema was a worsening of my COPD! All GP did was check for covid!
- August 2020 - GP sent me for a chest x-ray and the Edema was diagnosed. One week in hospital on twice daily injections of Furosemide.
- September 2020 to March 2021 - Various appointments with HF nurses who confirmed that the Edema was because I had chronic heart failure and right ventricle failure.
- April 2021 - HF nurse suspected Amyloidosis from various scans. Therefore, I was sent for an MRI scan at Papworth. This strongly suggested Amyloidosis.
- June 2021 and July 2021 - Appointments at the Royal Free Hospital. After various tests - SAP, DPD and MRI scans, with a radio-isotope injection and a "stomach" biopsy, AL amyloidosis was diagnosed. Letter outlining treatment sent to local hospital and to me.
- August 2021 - After a few weeks delay, contact between the haemotolology departments finally made! I am now having a few days in hospital for a bone marrow biopsy, CT scan etc.

For about a year, I have been taking various diuretics - mainly Bumetanide, but also Spironolactone and Metolazone (weekly). I don't think I now have Pulmonary Edema, but my legs/feet are still bad with Peripheral Edema. I am hoping that the Edema or my low blood pressure will not prevent me having my chemo. But I have faith in the haemotologist and heart failure nurses to do their best.