I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: jenb on April 23, 2019, 02:55:00 PM
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Not sure how much you want to know but here goes. Any questions, feel free to ask.
I am 69 years old with polycystic kidney disease. On transplant list on for five years.
Called at 1 a.m. on April 1 and told about kidney – KDPI 38 – high risk. Did I want them to do a match. l said yes. They called back 6 a.m. and said get to Seattle Virginia Mason asap. Got there around 9 and surgery took place about noon I think. I had a huge polycystic kidney removed, new kidney installed and some cysts on my liver removed.
Surgeon asked if I wanted an epidural. He said it would help with the soreness after. I left it up to him. They started an epidural and at the same time turned on the oxygen. So all tubes and catheters and IVs were done while I was asleep.
I had complications. First off from 4/2 – 4/9 I could not eat or drink. Everything just caught right below by throat. I had to force down pills which they would give me in liquid form or crush down in applesauce. Not really nauseated – just could not swallow.
Pain for two days and then off the pain medication. Started walking second day – not far. Did five thymo blasts. Did two blood transfusions.
Back very sore which was being on operating table and turned all over. Not to mention being in hospital bed. I think the epidural also bothered me.
Because the kidney I received had been placed on ice, it did not wake up for about ten days. This required me to have two sessions of dialysis. So they put in temporary access. The sessions were two days apart. The dialysis brought creatinine down and they didn’t know if the kidney was starting to work so they would wait another day to see if It went up or down. It went up so they knew new kidney was not working so more dialysis. Then it started to come down without dialysis but very slow. My doctor was insistent that I get out of the hospital. Said with no immune system it was no place to be. But he couldn’t let me go with the temporary access for dialysis. So I had to have another procedure to put in a central venous tunnel port in case dialysis needed again. It wasn’t.
April 12 discharged. Very weak, fatigued and pretty out of it still. Have to stay near the hospital so rented an apartment in Seattle for a month. Feeling better each day. Feel medication is manageable. Still tired and weak. Getting out for drives and some walks. Creatinine down from 7 ish to 1.3.
April 24 (tomorrow) I have this stint and channeling removed.
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congrats! lovely that your new kidney finally woke up.
Just think how great you will feel once you are all healed up, having that huge mass of polycystic kidney out of there!
best of luck to you and keep us posted.
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I'm so interested to read your transplant story. Your age and cause of kidney failure parallel mine. I do have some questions when you feel up to answering.
What are thymo blasts?
Knowing what you know now, would you still agree to an epidural?
Did you not do dialysis before the transplant? Why did you need an access installed post-op?
You only needed pain meds for two days post-op? Is that because of your swallowing problem or because you were really pain free?
Thank you for posting. I hope you feel her and better each day.
Kathy
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Congratulations JenB
:yahoo;
Fantastic news, glad to read your kidney is waking up!!
Lots of love, luck, strength and healing vibes, Cas
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Congratulations, glad to see your Creatinine fell into the normal range. I’m sure your overloaded with all the medications and clinic visits but those should decide sharply over the next five months.
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I hope you are healing and feeling better every day. Slow and steady. Sending you best wishes.
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Congratulations!!
Hope you're improving day by day.
I was offered the epidural and if I accepted it, I was to be awake for the whole procedure!
I also really struggled to swallow after. I had to take tiny bites of a sandwich then fill my mouth with water to get the bread soggy enough to swallow.
I also suffered severely with back pain (worse than the pain at the transplant site), but I do have a lose disk and can't lie for long on my back.
I can see why they wanted you out of hospital. I picked up an infection and that was also worse than any of the effects from surgery.
Don't be too concerned if kidney function results start to drop off. I've had a bit of a rollercoaster since my transplant last month, but most of the time rejection and other other complications can be reversed relatively quickly.
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Kathymac,
You asked about a few things.
The Thymo blasts are what the nurses called the thymoglobulin. It is for anti rejection and is given through the iv. I think it takes about 8 hours.
I probably would do the epidural again. Hard to say not knowing what it would have been like without. Perhaps request taken out earlier because my back was so sore.
No I never had dialysis - til post transplant. That was always my goal. My doctor had mentioned a fistula a couple years before and I just let it go thinking if he thought it necessary he would pursue it harder. I'm really quite a sissy and tend to put off anything that might hurt. Also, I've always been afraid of needles. I had heard that a new kidney might not start right away but I figured mine would.
Only two days of pain meds because I really wasn't in pain. More uncomfortable but I was so tired I slept it off.
Anything else just ask.
Jenny
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Thanks for the responses jenb and congratulations on the pre-emptive transplant. That was my goal too when I first got on the transplant list over 6 years ago. I was able to hold out until February of this year when I finally had to start peritoneal dialysis. That's the price i pay for living in Southern California where the waiting list for a kidney goes on and on (and on).
I hope after what sounds like a somewhat rocky start, things will continue to go smoothly for you.
Kathy
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Congratulations on your transplant! I confess that I'd never heard of having an epidural instead of general anaesthetic for transplant surgery. How interesting!!
I'd never heard of Thymoblasts, either. Sounds like the title of a cheap sci-fi movie! LOL!
I didn't experience much post-op pain, either. I was sent home with a script for painkillers and had it filled, but I never needed it. Tylenol worked well enough for me.
How are you feeling today? Do you feel like you are still progressing pretty well?
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No, No, No. I did have general anaesthetia. I was completely out. The epidural was used in addition. I noted that Gilders said they were offered the epidural but would be awake through the procedure. I don't see how that is even possible.
I feel pretty good. I am anemic right now so run down but medication is going good. They keep doing blood draws Monday, Wednesday, Friday so I feel it is hard to build up blood supply. I guess when they remove a polycystic kidney it attaches to other organs and in surgery you lose a lot of blood. And through blood transfusion, since it is not yours, you lose some of what they give you.
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Thanks for clearing that up for me, jenb!
I'm glad to hear you're feeling OK. I know you are physically feeling all sorts of odd things right now, but what does it feel like being rid of a large cystic kidney? Can you feel a difference?
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No, I really don't feel a difference and certainly no flat tummy. Ankles looking better though.
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No, No, No. I did have general anaesthetia. I was completely out. The epidural was used in addition. I noted that Gilders said they were offered the epidural but would be awake through the procedure. I don't see how that is even possible.
It was definitely offered to me as an alternative to general anaesthetic. It hadn't been mentioned at any point during the transplant work up. The anaesthetist visited me on the ward about 1/2 hour before I was taken to surgery and gave me the option. I may have chose to have it done without general anaesthetic if I'd been asked a week or so before, but not when it was sprung on me 1/2 hour before.
The day after, the same anaesthetist came to see me and said that it was for the best that I chose a general anaesthetic, as I was lying on the operating table, already opened up, for around 7 hours while I waited for my dad's kidney (he had a bad bleed so took a long time to remove it). I would have been very worried about my dad's health if I'd of been waiting that long awake knowing they were struggling with my dad.
I don't know if this is a "UK thing", but a quick google search brings up some case studies, but they're all in UK (then again I'm in UK so maybe Google is filtering results to more UK based ones?)
I do suffer from sleep apnea, so maybe that's another reason why it was offered to me.
To me it seems strange having an epidural if you're already having general anaesthetic. If the general anaesthetic works then surely there's no need for an epidural?
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The epidural stays in place for several days for comfort. I don't know if it works off the drip or that little button you press.
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Your epidural was likely for post op pain. I know during c-sections they do the epidural with Duramorph, a long acting morphine drug. Those mothers are up and about right away and dressed to go home the next day. I wasn't offered one with my transplant but would have taken it for sure!