Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question in this series of questions from our client Robert and the question last week was PART 9 of
You can check out last week’s episode by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to answer another question from one of my clients Sue, which are excerpts from phone and email counselling and consulting sessions with me and the question this week is
My Dad has end-stage HIV and is on ECMO in Intensive Care! Can he have a lung transplant? (PART 1)
Sue describes her Dad’s situation as follows
Late Jan 2016 my dad had late diagnosis of HIV (Late stage). Cd4 count of 4. Therefore received HAART (Antiretroviral therapy) treatment late. He was diagnosed with MS 7 or so years ago and was an outpatient receiving regular treatment to manage the MS.
I was told by the hospital that there is an investigation underway as my dad should have been given a HIV test years ago as a general procedure and that it may not be MS that he as but an AIDS related illness.
From having the HIV test in January he went home and was told he would receive letter to come back to hospital. By 1 st week of march my dad still had no letter so his local GP told him to just turn up to hospital where he was immediately admitted to emergency assessment.
He was 40kg (usual weight 70kg) and had suffered from incontinence for 5 months. After 2 days he was moved to the immunology ward and was suspected of having PCP (Pneumocystis pneumonia) after his breathing started becoming shallow. X-rays showed his lungs were very poorly with a lot of scarring.
After 3-4 days he seemed to get worse and needed more oxygen. He was moved to ICU as it was found he got MRSA and a urine infection. The doctor and consultants there said he in is a very bad way and overnight both lungs had collapsed. They did not have an ECMO machine and there was nothing else they could do other than try a hybrid approach to support the lungs but admitted they have not done this before. They were awaiting a hospital in central London that had the ECMO machine. They were considering taking him. By the next day the other hospital accepted to collect my dad. He has been there on ECMO for 13 days.
They have been clearing up the MRSA and urine infection with a range of antibiotics (4 or 5 types). In the last 4 – 5 days they found the specific pneumonia it was and started treatment along with HAART antiretroviral treatment.
They started to wean him from the ECMO 72 hours from him being in. And all their regular attempts have failed. He still requires approx 35-40% oxygen. And yesterday he has started to require increased oxygen pressure. I was told few things such as this were heading in the wrong direction and he is ‘still the same’ or ‘no change’ whereas a week ago I was told he was responding well to treatment. They try to wean him every few days and he fights the tubes when they take him out of the induced coma which aggravate his vitals.
My questions are:
– Can he not get a lung transplant?
– Can I sue due to the late (misdiagnosis ) and failing to test him (HIV doctor said he must have had HIV for at least 9-10 yrs)… but the same hospital was treating him for years as outpatient for MS.
– what questions should I be asking the doctor and consultants.
– is it possible they can bring him round and take the breathing tube out and input a tracheostomy
I feel the hospital is leaning towards telling us his body is showing no improvements and it’s in his interest to switch the machine off. They have already said we annoy keep him on ECMO forever but he has only been on it for 13 days!
I forgot to say my dad is 64. He went to the gym 5-6 times a week up until last year when he began having muscle weakness in one leg.
Doctors are now saying they will assess his lactic acid or something like this to assess if he would be mobile after spending this length of time in a hospital in his condition…. aka assessing quality of life.
Thank you for being a client and thank you for using my 1:1 phone/email counselling, consulting and advocacy service, I appreciate it!
Thank you for sharing your Dad’s situation.
I’m very sorry to hear that he’s in such a difficult situation.
To give you a little bit more context, I have looked after many Patients on VV ECMO and I still do one shift a week in an ICU that’s an ECMO centre.
To answer your questions, please see in red
– Can he not get a lung transplant? > ECMO can be used as a bridge to a lung transplant
– Can I sue due to the late (misdiagnosis ) and failing to test him (HIV doctor said he must have had HIV for at least 9-10 yrs)… but the same hospital was treating him for years as outpatient for MS. > I think you have a very strong case to sue, if you have documentation that supports your claim
– what questions should I be asking the doctor and consultants. >
- Is he on any inotropes/vasopressors such as Noradrenaline/Norepinephrine and/or Adrenaline/Epinephrine?
- Have they tried to wean him off ECMO?
- What is his blood clotting like? I.e. Patients on ECMO require a Heparin infusion (a blood thinning medicine) to prevent blood clots from forming during ECMO
- What ventilation settings is he on and do they think the ventilation support would be sufficient to wean him off ECMO
– is it possible they can bring him round and take the breathing tube out and input a tracheostomy >
in principal absolutely yes. Your Dad would be on Heparin for the ECMO and Heparin is a blood thinner. Depending on how much Heparin he’s on and how thick or thin his blood currently is they may be reluctant to do a tracheostomy. However most of the time with foresight and planning they should be able to do a tracheostomy. For example, they could stop the Heparin before doing the tracheostomy and potentially also give FFP (Fresh frozen plasma) blood products to improve the blood clotting. Again, they have to weigh up the risk between bleeding because of the Heparin and performing a tracheostomy and also the risk of blood clots developing whilst on ECMO.
Also, you mention that they want to assess quality of life. Quality of life is something very subjective and they are also talking about a future perception of quality of life. They are trying to assess something entirely hypothetical because nobody knows what the future looks like… Just some food for thought…
My best advice is always that everything in life is negotiable, including treatment for critically ill Patients in Intensive Care if you know what to look for and if you know how to position diagnosis and prognosis.
The answers that I have given you now, should be your first points of discussions with the Intensive Care team to get the ball rolling and find out where you stand with
a) Weaning off ECMO
b) Using ECMO for the potential of a lung transplant
Overall, I would say that your Dad is certainly in a very critical condition and if they can’t wean him off ECMO, there is a very high risk they may say that he’s not a candidate for a lung transplant because of his progressive HIV.
But again, you need ask and enter those discussions in order to find out.
13 days on ECMO is an average time and I personally have seen critically ill Patients on ECMO for up to three weeks but I do know that time frames can vary significantly and I have heard of cases where ECMO was being used for up to 8 weeks.
Please also have a look at other consulting sessions I have done with other clients who had loved ones one ECMO here
Wishing you and your family all the best!
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
You get to that all important feeling of making informed decisions, get PEACE OF MIND, CONTROL, POWER AND INFLUENCE when you download your FREE “INSTANT IMPACT” report NOW by entering your email below!
In Your FREE “INSTANT IMPACT” report you’ll learn quickly how to make informed decisions, get PEACE OF MIND, real power and real control and how you can influence decision making fast, whilst your loved one is critically ill in Intensive Care! Your FREE “INSTANT IMPACT” Report gives you in-depth insight that you must know whilst your loved one is critically ill or is even dying in Intensive Care!
Sign up and download your FREE “INSTANT IMPACT” REPORT now by entering your email below! In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care! In your FREE report you’ll also discover
- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
- How to eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 mind blowing tips& strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
- You’ll get real world examples that you can easily adapt to your and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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