Have you seen this before? Can you help?

I have a friend, George (not his real name), who, apart from being on dialysis, has an unusual bursa problem. Talking about it with him, it occurred to us that other people may have the same thing and have some advice about how they manage it.

IMG_8236

George’s swollen bursa

scapulothoracic-bursitis-shoulderThe problem is with his infraserratus scapula bursa. A bursa is a thin cushion of lubricating fluid located at a point of friction between a bone and the surrounding tissue/bone. George’s problem is the bursa just below his right scapula (that is just below the wingy part of his shoulder). Its job is to lubricate where the shoulder rubs against his rib cage.

 

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Time for draining! – About 150mls of bursa fluid and blood

In his case, his bursa decided to fill itself with fluid, to the point where it has become a 150ml-plus bag of fluid extending down the right side of his back. At first (when it was small and manageable), his local doctor worried that it was cancer, so he was referred to a specialist surgeon, who ordered an MRI of the area. It identified the bursa as the problem, so his cancer worries disappeared.

But how to deal with the bursa? It was not painful, just annoying and embarrassing. After some detailed research (using Dr Google and his army of medical partners, here and here), he discovered that it probably began as an overuse problem, following 20 years and hundreds of hours extending his right (fistula) arm for dialysis. This is not a common problem, but it is (yet another) known outcome of long-term dialysis.

1-infraserratus-bursaAs an interim measure, the surgeon drained much of the fluid and sent him home. Over the next three years, he had several Cortisone injections aimed at stopping the fluid flow and the bursa drained about once a month. Nothing worked: it just kept coming back, each time a little larger. It is now interfering with his sleep (and dressing – T-Shirts especially!). He finally decided to see if there was a better way to deal with it. He saw several specialist surgeons, most of whom recommended removing it surgically.

The trouble is that as a long-term dialysis patient, George has all the co-morbidities associated with that: AF and other heart problems, compromised immunity, bleeding and general fragility that makes an operation quite dangerous. After long discussions with his Cardiologist, he has decided to wait about six months. He has been told that the bursa may reach a certain size, then stop growing (when the fluid pressure on the bursa bag holds back the production of more fluid). This is not certain, but he’s giving it a try.

If it does not stop expanding, then his Plan B is to risk surgery.

crowdsourcing

Crowdsourcing! Tapping into the wisdom of the crowd.

But even though it is rare, surely someone has or had something similar. And perhaps they have found a better way to manage it. That’s why he decided to put his story on BigDandMe, to reach as many dialysis patients as possible, and maybe find another way to deal with it.

So if you can help, or know someone who may be able to help, please add what you know to the comments, or email me directly (see About).

Who knows what can be achieved with the power of crowdsourcing!

 

Update

img_8252George’s bursa was aspirated (drained) a week ago and the doctor collected 220mls of fluid and blood.

img_8254It seems that there is no limit to how big the bursa can get. George has now decided to talk to a surgeon about having it removed. But he is still keen to hear from others who have experience with this kind of problem and would appreciate any further feedback or advice.

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Skin too thin for a fistula?

John emailed me today:
Hello Greg,

800px-Schema_fistule_arterio-veineuse_-_AV_fistulaI found your Big D and Me blog when Googling “fistula thin skin”. Thank you for the thoughtful blogging about dialysis and your compassionate spirit reflected in your posts. If you don’t mind, I’m writing to ask your advice or for some of your knowledge. If you wish, I can re-post this on your blog site and you can reply there if you want this thread available to all.

My 81-year-old mom has been on dialysis for 5 years in Memphis, Tennessee, USA. She began dialysis soon after heart surgery. To begin dialysis, she went through the usual process of a Permacath while building/growing a fistula in her left arm. The fistula performed well until last Spring when her fistula burst and haemorrhaged twice, each of which nearly killed her. The vascular surgeon opened the fistula site to rebuild but said the fistula was heavily ulcerated and unusable. (I suspect poor care of the fistula over time by medical staff, but that is in the past.)

We had an appointment with the vascular surgeon for her to have a vein mapping done in her other arm for a possible new fistula, but the port, which she had put in after the fistula burst, became infected and she became septic. She was taken to the hospital to have the infection treated with IV antibiotics, so she missed the vein mapping appointment. While in the hospital, the cardiologist and nephrologist said she was not a candidate for a new fistula because her skin is too thin and fragile.

While I believe it is certainly possible that her skin could be too fragile, it’s odd to me that the vascular surgeon, who examined the arm just a couple of weeks earlier, seemed encouraging about the possibility of a new fistula. (It’s hard to know who’s opinion to trust more. I value the cardiologist’s opinion least because he doesn’t deal with the mechanical aspects of a fistula and dialysis scenarios as much.)

Without a fistula, of course, a Permacath is the only other option, which I believe will likely become infected with time.

Question: Have you heard, in your experience, of age and/or skin condition being a factor in evaluating a fistula site, and then completely ruling out the possibility of a fistula?

If a port is going to be her only option, can you offer advice about avoiding infection and catching it early if it happens? (My understanding is that a port is always removed when there is an infection because a foreign body can harbor bacteria. Of course, infection and port removal mean yet more hospital stays and procedures.)

Part of the picture here is my mom’s quality of life. She is very sharp mentally and was walking on her walker a few weeks ago. I believe she could continue with a significant quality of life if she could remain infection free and dialysing regularly without incident. But, with event after event (haemorrhages and infections), she has expressed an unwillingness to tolerate that for long, and I would not blame her.

Thanks for any advice or knowledge you may offer.

My initial response:

Hi John.  Thanks for your email.

I’m sorry to hear about your mother. It is an awful time for both of you.  Give me a couple of days to think and to ask around.  I’ll come back to you soon.

In the meantime, I’ll put up your question as a new post, so that others may help too.

Update:  We’ve had some great responses:

  • Henning, as usual, told it as it is:

….Hello Greg and John,

Unfortunately, the cardiologist and nephrologist are probably right. You do need a certain level of tissue above the fistula for it not to create trouble. On the other hand, I can’t be too deep either. The more shallow the fistula, the greater the risk of haemorrhage. (see the rest in his comment below)

  • Julie Tondello gave us the clinician’s viewpoint:

Hi Greg,

In our experience, the viability of creating a new fistula would generally be established through vein mapping and reviewed by a vascular surgeon and care by a vascular access nurse.

Many dialysis patients are in their 80’s and even 90’s have very fragile skin.

Avoiding infection of a perm cath needs to be the responsibility of nursing/ medical staff and the patient themselves. The incidence of infection will vary from clinic to clinic but a good clinic should have zero infections. Be scrupulous with hygiene is paramount. Many clinics use the principles of Aseptic Non-Touch Technique (ANTT) through the procedure of connection, disconnection and dressing changes.

Small measures but important, patient and nurse wear a mask when connecting/ disconnecting/dressing. Look for early signs of infection, inflammation, temperature, rigors. Change dressing weekly unless dressing compromised. Advise patient not to get permcath wet in shower or pool.

I hope this is of some help.

Regards, Julie

  • In another comment dynamicdialysis (below) suggested seeing a vascular surgeon vascular surgeon, and that fistulas  can be made in the leg.

Many thanks to all so far!

(more…)

Preventing Fistula Ruptures: training course for patients

DV Poster 99DesI have just returned from the Renal Society of Australia’s annual conference, held on June 20 t0 22 this year at the Gold Coast, Queensland.  The conference is for renal professionals, nurses, clinicians, doctors and consultants. I went along because I was a co-author on one of the presentations.

The other author and presenter was Julie Tondello, a renal Associate Nurse Unit Manager at my Diaverum dialysis clinic in Diamond Valley, Victoria. The paper was called “Can your fistula rupture?” and was triggered by the ongoing posts, comments and queries about fistula rupture deaths on this blog. (more…)

Who stops Dad’s dialysis?

Dont stop me nowIsabel wrote to me last week:

I have an 86-year-old father who has only been on dialysis for 2 years, but he’s also battling lung problems-COPD, early stages of Parkinson’s and hypertension. He’s bed ridden and lays on his bed all day long day after day. Sometimes a friend comes over and helps us move him to his chair but my dad gets frustrated that he can no longer walk. (more…)

Speaking of dialysis…

1-IMG_1532As I hoped, here is the video of my speech to the Diaverum Annual Conference at Cascais, Portugal, last month.  It was called: The View from the Chair, a Patient’s Perspective.

It covers a bit of ground, but the highlights (apart from the joke at the start!) are: (more…)

Lisbon adventure #1

1-pickp-001Lisbon: we were having a ball.  Different, amazing buildings; windy, cobbled lanes; tiny yellow trams squeezing through cramped mediaeval streets, shops with never-seen-before stuff that’s hard to resist.  History at every turn.  And here comes one of those delightful No 28 trams.  Will we catch it?  Absolutely.  Where’s it going?  Who cares! (more…)

Off to the Diaverum Global Dialysis Conference

I’ve been missing in action for the last few weeks, for a couple of reasons.

Josie & Liam Firstly, our No.2 Son just married his lovely fiancé here in sunny Melbourne (on the beach at Elwood).  It was a great wedding, but they live in London, so Julie and I have been pretty busy preparing. Not much time for blogging.

(more…)

91 years old and not pleased to be on BigD – Welcome to the club!

1-unsureJack added a comment a few weeks ago that is worth re-posting as a separate topic.  It’s a little twist on our most fundamental challenge.

I am a young 91 yr old man who has had systolic kidneys for over 30+ years. 4.5 +- creatinine level. last April (2015) my kidneys finally gave out and after a week in E.R. and another week in rehab. now on dialysis 3 times a week for 3 hours. My last check-up showed my creatinine at 5.9., a little improvement. (more…)

Fistulas and fatal haemorrhages: what to do

1-Snapshot_3In February 2010, I wrote Dialysis: death via a damaged fistula, which was about Maya’s father, who died when his sore and swollen fistula burst in bed and he bled to death.  At the time I asked some of the experts I knew about this and all said it happens, but was very rare.

However, over the following 18 months I had a steady flow of posts about other people who had died or came close to death from a leaking or haemorrhaging fistula, and it started to look a lot less rare. (more…)

e-Patients: being our own guardian angel

1-IMG_1532I am now in week 5 of the eHealth MOOC I wrote about in my last post.

It has been a revelation.

The most eye-opening subject was covered in week 3: eHealth for patients and citizens: all about e-patients.

Before we go further, meet e-patient Dave deBronkhart.  His story cuts to the chase: it saves me writing and it saves you reading.  It only runs for 16 minutes, and its great! (more…)