My Story....

[JR from Ontario]

Hi everyone,

My name is JR, I'm 25 years old, from ontario canada and here's my story.

I was born with kidney problems and a small bladder and some asthma. My right kidney failed to grow prior to birth, and my left kidney was only at around 35% when I was born. The small bladder caused urine to reflux into my good kidney, damaging it consistently.

When I was 10, I have a bladder augmentation. During the first surgery, I had a massive asthma attack. The surgeons almost lost me. They were force to stitch me up, and postpone the surgery for a month. For the entire month I was on prednisone and hand a (hankey?) catheter in myheart for antibiotics. The second surgery went by flawlessly, and I had a new bladder (one that could hold over 2Litres!). So off home I went, kidney at 35%, new bladder, no reflux , life was good.

I knew the time would come where my kidney would dwindle and I would need dialysis.

Fast forward to present day. My kidney is now down to 10%. I'm a small guy (5'3", 115lbs) so my 10% is still doing some work, and I don't have a need for dialysis yet. The preliminary work for a kidney donor has been done and my father was found to be a suitable donor. My entire plan from the get go was to forego dialysis in favour of a transplant. Being that I'm young and active, I feel the effects of dialysis would be too difficult for me to endure.

So the transplant date was set to September 23rd 2004. On the 21st, my father and I go in for pre-admission tests. During the interview with the anesthesiologist, she notes some abnormal wheezing in my lungs. She asks me if I ever see a respirologist for my asthma. Frankly, in my opinion, I don't have problems with my asthma, it is controlled, and this is what I tell her. She insists on have flow tests done to check my lung capacity.

Off I go to get the tests done. It turns out my lung capacity is pretty weak, and this concerns the anasthesiologists. They don't want a repeat occurance from my previous surgery to happen. The doctors talk it over with the transplant team and the coordinator informs me that if I'm to go through with the surgery, they need to admit me to hospital right away and start an IV drip of solumedrol (prednisone) to clear up the tightness in my chest (which consciously, I can't tell of any tightness, and I feel fine). I obviously agree. So we wait in the ER for 8 hours while they get my room ready and pump with my prednisone. I stay overnight, get another dose is the morning. The afternoon of the 22nd, I do another flow test. Results are better, but not up to snuff. The doctors talk it over and find that it's not wise to go through with the surgery, they simply don't feel comfortable that my lungs won't camp up during the surgery.

So they discharge me, put me on a new asthma medication - Advair, and tell me I have to see the respirologist in two weeks. The new surgery date is tentatively set for the 4th of november, pending my lungs get better.

Well, I must say that it was a real kick in the n*ts. I'm disappointed, but then again, I understand their concern. Another reason the surgery didn't happen was due to the fact that this surgery is still considered an "elective surgery". Remember, my kidney still functions to some extent.. I have told the doctors that if my kidney were to suddenly stop functioning in the month leading to the new date that I would refuse dialysis. My belief is that if we cross that bridge, my surgery will no longer be "elective", it will be "mandatory" for my survival and the risks will no longer outweigh the need.

So that's my story. I'm patiently waiting here.. waiting for the new tests to come to see how my medication is coming. I may request to be put on prednisone for the 3 weeks prior to surgery "just to be sure". You see, I have dry skin/mild eczema, and the prednisone does wonders for my skin/asthma. Makes me feel great, so I'm all for it. (I'm aware of some different views concerning prednisone, but my body agrees with it). I've been on it before for various things, and my skin / asthma always clears up and I feel fantastic when I'm on it. The real kicker was that I had 3 months off work, and now I'm back for a month, so kind of a downer there too

JR from Ontario

[Hal]

Hi JR,

I'm sorry about the trouble your having with your transplant.

I hope this new asthma medication helps it settle down for you and the 4th November is a go date.

Its good you manage well on predinisone / prednisolone but there are some pretty bad possible side affects associated with it, so please be aware of these.

Good luck,

Hal.

[JR from Ontario]

Thanks Hal.

I'm aware of the potential side-effects of prednisone. In fact, when I was previously on prednisone, I did notice a weight increase, increase in appetite and "rounder" face (according to my family). However, most of these are manageable for myself. In fact, I could use a few extra pounds since I'm pretty skinny/small. My ideal weight would be around 125-130lb.

I didn't really experience any other side-effects that were noticeable in the times I've taken prednisone. It's true that I never took it for more than a few months, but life was definitely better with it.

[wing]

It's none of my business and up to you entirely but................
I think you would be very un-wise to refuse dialysis should your kidney function diminish to such an extent that this is required.
Far from encouraging your surgeons to go ahead with your transplant, you will give them several more reasons to state you are medically unfit for surgery!
I appreciate your frustration but the anaesthetist just wants to ensure your safety.
Good luck with it all and I hope your current treatment has the desired effect.

[milenamcdonald]

Hi JR

I read your post with great interest as I have a 2.5 year old son with about 28% kidney function and I hope he is as lucky as you to get to 25 years of age with 10% (even though you had 35% when you were born), he has no bladder issues though.

I was just wondering how was your life growing up at school etc with only 35% kidney function did you manage to do what all the other kids could do?

I constantly worry about my son and how will his life be, as he has many hurdles to go through in his life, although now he is doing exceptionally well for now......thankgoodness.

Thanks very much for posting your story.

Kind regards
Milena and Joshua - Sydney Australia.

[JMan]

Hi JR,

I have to say I kinda agree with Wing..

On the other hand you don't KNOW whats going to happen till you get those results, the waiting is certainly the worst part.

You've done well to get to 25 without complete loss of kidney function.
I can understand your fears about dialysis but it most certainly isn't the end of the road if well done, and in fact.

The aneathetists are in my opinion one of the most important team members (they make sure you don't end up dead!) so I tend to listen to them and take their advice. I can see where they are coming from, they want your op to be as safe as possible, AND the better shape you are in, the less chance of problems with the donated organ.

You mention that your small in stature, you mayhave been told this is probably due to reduced renal function (child kidney patients tend to be quite small unless transplanted as the kidneys in part have an effect on growth) I've been lucky enough to 'catch up' (I think I'm still growing) but I come from a tall family anyway..

To Milena and Joshua. I can try and answer your question only from my perspective as my kidneys failed at 5 years (I'm 27 now).
School carries on as 'normal as possible' despite any treatment. At least in the UK there is a legal responsibilty to the childs education which extends to the provision of any extra support in teaching (eg tutors) or equipment (eg laptops etc) for a child to be educated. Hospitals sometimes have hospital 'schools' that liase with childs own school during any periods of treatment or illness and help to maintain a certain teherpuetic 'normality' whilst at the same time balancing health and education. (there are times when health certainly does need to come first)
I managed to get through school OK and completed secondary education, college and university whilst on haemodialysis, albeit a year 'later' than the normal age (meaning I was the oldest in the class)
Sports wise I did most things, transplanted I couldn't do stuff like rugby (contact sport) and cricket required a protective shield made up by the plaster dept but otherwise I did most stuff.

Hope this is helpful