Was told need a heart and lung transplant soon but now they just told me I'm not "serious" confused 🤔

[Mircle2]

Hi

I have a heart problem since birth it's called pulmonary hypertension I also have eplipsy since 2001 and I have had a few blood clot in my lung in the passed. Since October 2016 I have been in & out of hospital due to another clot so & high pressure in my lungs so the Drs said if I wanted a better life I should think about having a heart and lung transplant so the all the talks with Drs start in the mean time Ian looking after my 11year old daughter who went to high school this Sept! So after all the outpatient appointments and talks I decided I will go for it so I can see my daughter grow up & enjoy my life aswell as you can understand how hard it to stay in hospital when you have kids. So now my Dr has turned around and said I will have to wait up to 1 year just for assessment but all of sudden in not serious so I'm confused because I feel like they have got my hopes high then just throw be back to the ground again.. I don't know who to trust anymore!

[Mircle2]

Still no reply hope everyone is ok x

[skid112 Heart Star]

Hi there. I'm sure your doctors would not have taken this decision lightly. I dont know enough about your condition to comment on the treatment and meds that have been prescribed so far but my little reading on the subject would suggest that transplant surgery isn't common as there are medications that treat it far more effectively.

Perhaps you should revisit your GP and talk it through with them and the way forwards. I hope your situation is resolved soon take care

There does tend to be fewer members and nurses around at the weekend which is why it took so long to get a reply

[Mircle2 in reply to skid112]

Thanks skid112 for responding back

I feel so hurt at the moment that I feel like backing out of it plus I lost a really good friend after heart transplant last week making me have second thoughts x ☺ thanks once again x

[Midgeymoo17]

Obviously to be considered for a transplant your heart condition is serious, however, I wonder if the doctors comment about 'not serious' was more relative to other people waiting for a transplant (rather than just any heart condition)? Some of these people waiting can be ventilated in ITU for weeks.

I may have very little knowledge of the transplant process, but I do know that doctors often make insensitive comparisons with totally innocent intentions. I had a cardiologist tell me how lucky and what a good quality of life I had- I can not eat properly and have to take prescribed nutritional supplements due to a congenital abnormality to the stomach, I am both fecally and uriany incontinet due to pelvic congenital abnormality and have to spend 7 hrs a week attached to a drip stand for a congenital abnormality. He meant the outcome of my cardiac surgeries but did not make that clear and expanded to all my conditions. I can say defecating in public as an adult with no control is an experience one never forgets so I was not pleased with this cardiologist.

This said, Not really sure why the year wait for a transplant suitability assessment- true if you are at home with your daughter I can see why you might not be a priority on the list- but I can not see why that stops them assessing suitability for transplantation. Maybe that is the question to be asking.

[Mircle2 in reply to Midgeymoo17]

Hi

Thanks for the response

And iam so sorry you have to go thought all that! the problem is we have no doctors in achd department anymore who can answer our questions so it just a waiting game I think that's why Iam getting more annoyed with the whole situation...

Xx

[Midgeymoo17 in reply to Mircle2]

I am taking it the name of the ACHD clinic you attend begins with an M.........

Yep I heard about that. If it really is winding you up maybe consider getting your GP to refer you to another ACHD clinic- preferably one with an on site transplant team. Remember it is entirely your choice where you are treated.

If you currently attend the one begging with M part the problem is the hospital that does ACHD care is run by a trust that does not do transplants. All transplants take place at USHM. (I am sure you already know this). It maybe better in the long run to cut the cord now and go somewhere that will offer both at the same hospital. Or if you can travel consider the Papworth. The Papworth do not have an ACHD team but if memory serves me right they are one of very few hospitals with an accredited Pulmonary Hypertension service. Most ACHD clinics do not have this service.