Road to transplant......we hope....

[Tibbs]

Good that things are moving along!

If Guys won't do it, ask them to refer you to Hammersmith. My dad had 2 arteries and it was looked upon as normal. they certainly said in the transplant seminar that we went to that they were happy to deal with multiple artery kidneys. One of the examples Mr Papalois (my surgeon) showed had 6 arteries, iirc!

[Dixie1]

Thanks guys.

Tibbs - that's interesting to know, thanks. Guys will definitely do two arteries, it's just they said that they won't do more than that, eg 3 and over.

[sporti]

Good luck Dixie x

[Dixie1]

Okay, panicking a bit...... Last Tuesday's tests went ahead for my husband (nuclear GFR study, CT scan of kidneys with contrast, X-rays of abdomen and finally X-ray of chest). He has had a call from one of the Urologists at Guys this afternoon and they have said that the kidney sizes look fine and there is only one artery to each kidney (a good thing apparently), BUT there is 'something' that they can't determine on his right kidney and they want to carry out a biopsy.

I am genuinely not panicking from my point of view because, right the way through this process, somehow or other, I have managed my expectations. If the transplant was not to go ahead my husband would be devastated but in all honesty I think I would be fine about it, other than being really sad for him, as I know how much he wants to help me. I do appreciate however that this is probably because I am not on dialysis yet and, if I was, in this instance I could experience a whole different level of emotion. Anyway, what I AM panicking about is that this 'something' could be something sinister. Of course I haven't said that to my husband, but I am feeling a little anxious. Hopefully we won't need to wait too long for the biopsy.

In the meantime, I have been sent appointments for a Myoview nuclear heart san. One date is for a small amount of radioactive tracer to be injected, followed by a heart scan at rest and then, a week later, the same again but this time a stress test. I was a little taken aback by this appointment, which arrived out of the blue (in fact I got a text message about it before the letter!). I have never had any heart issues or anything, so I was a little concerned that something in my recent blood tests had 'triggered' the appointment, so I rang the clinic. Anyway, it seems that this is standard practice for the work up of recipients. Deep joy. I shouldn't moan I guess, when they are going to such amazing lengths to ensure both my husband and I are fit and well.

[MandyA]

I had those nuclear heart scans.

The resting one was fine.

The exercise one was a bit weird.... I didn't have to actually exercise.... They injected something to stimulate my heart as if I was taking strenuous exercise.... so suddenly I felt really hot, out of breath, heart racing and with a dry mouth, lying totally still on the bed.

At my hospital, they now repeat all heart tests and scans annually while you are on the transplant waiting list.

Mandy

[sporti]

Hi Dixie1

Try not to worry too much - easier said than done I know. They are so thorough with the tests for donors and recipient that no stone goes uncovered. I hope it all works out for you and your husband. I've had nuclear scans. It's a little bit daunting as you don't have any control of your heart but it really is very quick and just breathe as if you're going up a hill. I could never do the exercise one as could never get the heart rate high enough!

[AmandaClare]

I think it's quite common for the pre-transplant tests to uncover anomalies. Being thoroughly checked out uncovers all our little abnormalities, most of which would never cause any issues. Looking at it a different way, even if the growth is sinister they've probably caught it very early and you've done hubby a great favour!

Hoping all is fine and the tx can go ahead. Keep us posted.

[Grey]

Dixie, regarding the issue with your hubby, trust me you should rather have the oddity checked than find out after transplant that he has a problematic or worse still failing kidney and then does no have a second one as backup. Yvonne my wife offered a kidney for me and underwent all the tests you two are going through, they are for a reason and are for the most part thorough and for very good reason. You would feel devastated if they took a kidney and then he ended up on dialysis because of a latent problem. Right now if that is anything to be worried about and gets worse, they can remove that kidney and he can hopefully live a full and productive life on the remaining one. If they cannot take a kidney from him for you, the system will eventually get you one and I am sure you will be happy just like the rest of us. Holding thumbs the biopsy shows nothing untoward but remember much better safe than sorry !

[Dixie1]

Okay - I am definitely panicking now...... My husband has had a 'frank' discussion with the hospital and we understand that the 'something' on his kidney is a solid mass and yes, they do suspect malignancy. They can only be sure however by doing a biopsy. This is due to be done this coming Monday and apparently we should have the results within 48-72 hours. I am trying not to 'jump the gun' but I can't help but feel extremely anxious. I am just praying that, should their suspicions be confirmed, they have found it early enough to cure it completely.

[Soobee]

I'm so sorry to hear that Dixie, like you said though, if it is sinister this means that they have picked it up far earlier than normal. And it might still not be bad news, I will keep everything crossed for you, x

[Grey]

Dixie, quiet frankly, look on the bright side, if it is something sinister it is so much better him finding out now than letting it grow and perhaps spread. Remember whatever we face, as tough as they may be, a strong positive attitude goes a long way making it easier to bear. We often have no choice, life thrusts these things on us, like you and me with kidney failure, but the right attitude makes it bearable! Holding thumbs whatever the outcome, but please be strong. Whatever the outcome, your transplant will come long soon enough one way or another.

[AmandaClare]

It's difficult waiting for these kinds of test results. A few days seems like forever. Thinking of you.

[Dixie1]

Well it seems we have reached the end of the road. My husband had his biopsy on Monday and we heard today that the tumour is malignant. Suffice to say he is absolutely devastated. Of course I know that if we weren't going through the whole work up process the cancer would not have been found so early and we are lucky etc etc but the cancer is not so much the issue for him, it's the transplant not going ahead. I can honestly say, hand on heart, the transplant is not the issue here for me. I just want my husband well and safe. But that is not enough for him. He is truly heartbroken and I don't know what to say to console him.

[Thumps]

Very sorry to hear that news

[rheaybou]

Well it seems we have reached the end of the road. My husband had his biopsy on Monday and we heard today that the tumour is malignant. Suffice to say he is absolutely devastated. Of course I know that if we weren't going through the whole work up process the cancer would not have been found so early and we are lucky etc etc but the cancer is not so much the issue for him, it's the transplant not going ahead. I can honestly say, hand on heart, the transplant is not the issue here for me. I just want my husband well and safe. But that is not enough for him. He is truly heartbroken and I don't know what to say to console him.

I don't think there is anything you can say to console him at the moment. He, like other donors had his heart set on helping you and this has stopped him. Hope that over the coming days he can find a way to deal with this and also ensure that his own health concerns are looked at so he can continue to support and help you.

From a recipient point of view I have had a setback that stopped at TX on the day - my donor wasn't well and nothing I could say would console him....it just took time. In the end my view that everyone was safe was my comfort.