Chronic Venous Insufficiency

[lindyloulou]

Hi all

Have regularly read your posts which are extremely helpful and have posted occasionally.

I have recently been diagnosed with CVI, has anyone else had this diagnosis, ? Is it linked to ET CALR.

When diagnosed I asked this question and was told no but need to be sure as I am aware not all specialities are aware of ET and it’s effects.

I am due to have day case treat ment where they ablate the affected veins.

I am currently having so many consultations with various specialities and just seem to be going round in rings.

I have complained for around 7 years now about leg pain but it has taken until now to get some answers, of course it had become far worse during that time.

Thank you for any advice you can give and fully appreciate this forum is there for us all.

Lynn x

[hunter5582]

CVI and CALR-ET are not directly related to each other; however, there is an indirect link. The symptoms and risks of both conditions overlap (e.g., thrombosis). Having both conditions would increase the risk of vascular complications. It speaks to the importance of effective treatment for both conditions.

Working with multiple specialists on multiple conditions requires effective case management to ensure optimal care. It is quite common for us to need to be our own case managers. We do have a strong vested interest in the outcome. Like you, I need to see many "ologists" to manage my care. I insist on integrated holistic care from all providers. I actively collaborate with mu providers to ensure that this happens. I make use of the patient portals to ensure that all providers have my medical records for all conditions. I go to all appointment with a written agenda that includes updates on other conditions even when they are not related to the condition for which I am seeing the specialist. Sometimes they see links that I do not.

The format looks like this.

Treatment goals:

Define for your doctor what your priorities are. Can be very specific at times.

Treatment Approach

Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers about all the interventions you use.

Updates/Issues/Questions

Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment.

Treatment

Review all treatment options – let the doc know what you are doing now and seek input about what to do next. Ask about ALL options, not just the one the doc recommends. Ask the doctor why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your risk tolerance and what risks you prefer to take to achieve your treatment goals.

Wishing you all the best.

[lindyloulou in reply to hunter5582]

Thank you so much Hunter, I am going armed with some of the advice you have given particularly around meds, diagnosis and outcomes but perhaps your format is a better one , especially the treatment side of things.

I am moving my haematologist appts to Leics as Notts and Leics systems don’t talk to each other, that way they can all see what’s going on as well as me telling them. Some use the patient portal and others don’t unfortunately.

It’s a bit of a nightmare to be honest but hopefully we will get there.

Thankyou again, your knowledge is so much appreciated.

Lynn x

[LIGEBA in reply to hunter5582]

hunter5582 I just have to say I am always amazed at how organized you are, how well informed you are, and how well you advocate for yourself. I am also very impressed with how you have managed to get your doctors to hear you when you describe your goals and how you have been able to keep all of them informed without them getting annoyed.

It's been my experience with some doctors that they don't seem to want to hear updates about any of my other conditions and often tell me that's not their area. When I try to explain that I understand that, and am just wanting to make sure all my doctors are on the same page, I get a brush off. Still trying to figure out the trick (which you seem to have done), or getting and keeping all my doctors on the same page so they don't do things like prescribe a medication that turns out interacts with another medication I am on and causes organ damage - in spite of them always having a current medication list.

I have changed some doctors a few times only to realize my experience seems to be the norm so I don't bother looking for new doctors anymore and instead do my best to keep advocating for myself, which I'm sure many can agree can be exhausting with an illness that can already leave us feeling quite fatigued.

As always, thank you for continually sharing your valuable input.

[katiewalsh]

Hi. I have venous insufficiency & it’s caused my legs to be stained a brownish color from leaked blood. I have MF & don’t know of any correlation. Good luck. Katie.

[hunter5582]

I have identified a care team that will work with me. Any provider that got annoyed with my approach would be replaced. I have only rarely needed to do this. The vast majority of my providers appreciate approaching care in an organized fashion. It actually saves them time and keeps them filled in at the same time.

Here are a few things that help make this work.

1. While Treatment Goals and Treatment Approach are on every agenda, I only actively discuss them in the first appointment with a provider. It would only come up again if for some reason it was part of a discussion about a treatment choice.

2. While I list updates to other conditions on the agenda, I do not necessarily actively discuss them. I assume my provider can read. I highlight the things I intend to discuss. This is usually that which is directly related to the specialty, something that we have previously discussed as being a concern due to the conditions (e.g., cardiac issues in the context of a MPN), and any questions that I have specific to this appointment. Sometimes my providers surprise me and discuss something not on the highlighted list.

3. Treatment decisions will always include discussing all viable options, with some exceptions. Sometimes a treatment decision is very straightforward. A fungal outer ear infection requires a fungal treatment of the ear canal. Not much discussion is needed. On the other hand, choosing what treatment to use for a MPN is a complex decision both in terms of what agent to choose and how to handle the dosing. This requires a discussion of all treatment options, what the treatment goal should be, what my risk tolerance is, and my preferred treatment strategy. Good doctors listen to their patients and respect their ability to make decisions.

Another thing I do is forward relevant labs and reports from other providers to each provider. I always make a point to tell them no reply is needed as this is just to save staff time uploading documents into the medical record. I take hard copies of the labs/reports with me just in case the provider does want to discuss them. I also take an updated medication list with me to all appointments. No matter how hard they try, the lists they have are often inaccurate. Something invisible to the patient is that when a provider e-prescribes a medication the software is checking for interactions with the medication listed in the record. The provider needs to stay aware of co-occurring conditions that may be a contraindication/caution for a medication. That is why keeping them up to date is so important. I always double check anything medication related myself using the ePocrates app. I often do that in the appointment if it is a medication I am not familiar with.

I have a great deal of respect for my care team and they consistently demonstrate respect to me. This is what a healthy doctor-patient relationship is about. A collaborative approach and shared decision making ensure optimal care.

Wishing you all the best in your self-advocacy.