Depression and Coping Post Transplant. What is a typical response and when should a partner worry?

[Newneedadvice]

I Live in London and met a wonderful man who soon into dating me told me he had a rare autoimmune disease & had had 2 kidney transplants by age 36.after much thought I decided it would definitely not stop dating him because he is ill.we are all going to get ill at some point anyway. He just got ill sooner.

What has worried me far more than the transplants,however is his total Denial of his condition and its gravity.he commonly says he doesn't see any difference in his health versus anyone else and recently... For 5 days we watched his BP increase everyday to hit 189/111m and yet my partner still went on drinking benders, full days in work and even had an energy drink knowing his BP was high enough to send anyone else to hospital. He never even called his specialist.

When he was behaving this way my worry/loving concern was a definite irritation to him rather than a comfort.i felt he wanted me to silently adopt his own denial.. To Not ask questions and essentially assist in a form ultra passive and very subtle self harming

To you all-0is is possible that he is suffering from post transplant depression & this is making him wreck less &, in denial about his life and serious health problems? Im in no position to advise as I've never experied this kind of adversity myself.. But my gut feeling is that he is ignoring his health to the point of causing himself real damage.

Has anyone post transplant experienced these kinds of behaviours or feelings? He is also very emotionally erratic, hot and cold/loving then callous and totally ilogical when angry...any insight? Are these common post transplant coping mechanisms or perhaps even drug side side effects from the transplant drugs to some degree?

I really appreciate your help

[AshokSeja]

See his nephrologist urgently and ask him to take his medication without missing. He should take more water atleast 5 liters a day. Check his serum creatinine levels. I wish for his healthy life😊.

[Stephk85]

Hi there. I've been through something similar but wasn't aware I was acting so wrecklessly at the time. I had my first transplant 8 years ago. I'm plagued with the thought that perhaps my attitude once I recovered in wanting to be normal, wanting to do everything with my friends that I did before. If I couldn't go out drinking I felt my friends become more distant. Im 4 weeks post second transplant and 33 years old. I am determined to make this last. To be the healthiest I can possibly be and challenge myself in sporting events to occupy my time, to eat healthy, to maintain a healthy BMI and bloody pressure. Maybe he's in the same mindset as me after my first transplant... If he's lived with a disease for that long, it doesn't surprise me he wants to pretend it doesn't exist. To be NORMAL. It would be interesting to know what sort of info he gets from his consultant about the disease itself. I get mixed messages on mine depending on who I talk to. Perhaps a private opinion on how to manage the condition and improve his quality of life would improve his optimism?

[Falkenhayn]

Autoimmune conditions can destroy the kidneys no matter what you do, so efforts to prevent their recurrence are limited. The response of the healthy majority to the most oppressed and misunderstood of all minorities, the chronically ill, is often to blame us for our condition whether or not we can do anything to prevent it. It is perfectly understandable that the incurably ill want to pretend that they are normal in order to enter to try to enter the world of the normal as much as they can.

[Redoralive]

I myself have a rare autoimmune condition (Scleroderma) that caused my kidneys to fail and I'm currently working my way through my first transplant at 24.

I totally understand your boyfriend because I'm exactly the same. I am aware that I'm sick but there's nothing I can do to fix it. My disease could cause kidney failure again at any time and beyond taking my meds theres no aspect of control. So I tend to act like I'm perfectly healthy, drink when I want and live my life without constantly worrying about my health. I don't want to be seen as some fragile sick person (even if I am) and while I'm not blaming you for your attitude (it's good you care), I don't think trying to live life like a normal adult his age makes him depressed.

[opie]

Do you have contact details for the transplant nurses at his unit? If you don't you should be able to find them online, or just phone the hospital switchboard and ask.

Post transplant life is complicated and no one is the same, but if you believe his behaviour is putting him (and the kidney) at risk you should talk to someone about it for your own piece of mind.

You will have to live with the consequences of what you did or didn't do. You can't make him do or not do anything but if you speak to the transplant nurses they can give you information and advice and you can make a decision based on that.

You need to be happy with the decisions you make, you are in a relationship and this affects you too...

[Mohammed1985]

I have had a kidney transplant in 2007 and it's still running ok but I have a lot of other conditions

I eat very very healthy

It helps and also it doesn't sometimes I do get upset and want to live like the normal people do

I understand your concern for him

But certainly it is not good for him to go on benders and then works etc he is excreting him self and also this is stressing you out Aswell because if anything happens to him it effects you also

He should have the decency to try his best for your sake

I do because of my wife and daughter but there are times

I feel very low and you should type his medication names on Google

And side effects to see

He will be on

Mychophenolate

Tacrilimous

I'm sure mood swings are a part of it

But in this day and age I have seen people who have good normal health with all sorts of mood swings and faces

So not really sure

But certainly a person gets effected by this type of illness

[manchestervintage]

Hi

I have bouts of depression (post transplant 11 years).

Emotions range from guilt, the people I have known sadly not with us anymore to people still on the waiting list.

Anger, why me at 19 having this illness and the effect on my life.

Lack of self esteem, I myself feel worthless at times, I never talk about my illness and push those close to me away, I don't want to accept anybody's help or care.

In my case because I feel weak, not as good as others, i want to prove I can do this on my own, I don't want sympathy and I don't want people telling me what to do.

If i do have an off time, I blame others for causing me stress etc.

I know I'm wrong and this leads to depression and the cycle starts again.

That blood pressure is a worry especially with the alcohol.

I hope this explains a bit, I take out my problems on my loved ones, because deep down I know they will always be there for me.

"You always hurt the ones you love"

[Dara3351]

I feel for you however, please do not be an enabler for him. There are hours of ups and downs. Drinking? Does not help considering the meds transplants have to endure. He needs help if he is in denial. He has you and one would think that would be enough .

Ask when his next appointment is. Just keep talking to him and be supportive but do not take his problems and put it on your back. Do not take his monkey off if his back and put it on you.

None of us are happy that we had to have a transplant but that’s where we are in life through no fault of our own.

I wish you the best! We are all here fir each other.