Test To Donate to Husband - My Story

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emmamays1978
Posts: 13
Joined: Mon Jan 22, 2018 11:23 am

Test To Donate to Husband - My Story

Post by emmamays1978 »

Hi I have found this website very useful over the last few weeks. I have been reading Team Tibs results are in and was very impressed with all the info and help he received so i thought I'd try to help others with the process that I have been going through and time lines for appointments. And advice will be greatly appreciated.
We have known for a few years my husband will eventually need a transplant so we had discussed it before about donation. In October 2017 at Salford Royal he was told his Kidney function had dropped to 12 and would need to start thinking of dialysis or transplant. He had a appointment with the transplant team in November and they gave him a card with a number for me to ring if I would be interested.I emailed the donor team on 15th November and received a reply to complete a questionnaire and return back to them and they would book me to see them. So 1st appointment was booked for 23/11/17. This was very straight forward blood pressure checked weight and then went to speak to the co-ordinator. Nice chat to give me some info on what happens next and asked if there was anything I wanted to ask. I then said I still wanted to go ahead and was sent for a blood test. I was told i would get a phone call when the results was in and they would start to book my appointments in. That night I got a call to say our blood groups matched so was quite happy to even get passed that bit. I then received a appointment to go to see the renal psychologist for 15/12 but I had to rearrange it to 3/1/2018. This was very straight forward just asked how I felt about the donation what I already knew (which i think I had read quite a lot ) was only in there 20 minutes which she ended with saying she was happy with everything and wished me luck for the future. late on that day I got a call to say that the tissue testing results was in and we was a match so we could do the direct as i had said if we wasn't I would do the pooled. Next day 4/1/18 I got my appointment to have the Kidney function test on 12/1/18. I was a bit worried about this test as I really dont like needles but I can honestly say it was completely fine the nurse was a very nice lady very chatty and but me at ease. I arrived for my appointment at 10.30am was seen within 5 minutes. Blood test taken and the dye injected. was told to wait in the small waiting room. there was a tv and 4 other people in having the same tests. Then had a 2 hour wait to have another blood test. I took a book to read as its long waits between. I then went down down the scan at about 13.00 then went back to the waiting room. Scan fine no problems at all just got lost on my way back. Final blood test was taken about 15.00 and i was free to go. Advice take something to eat or go straight to shop I was starving as we hadnt been allowed to eat since the day before. Next appoint letter came through on 11/1/18 for xray ct angiogram and XR Intravenous urogram for 26/1/18. On the 19th I rang to see if they had my results from the Kidney function test. They was in with both kidneys functioning good 1 @ 58 and 1 @ 63 they asked me if I had my appoint yet for the xrays and I told her the date she asked if I could come to the Kidney department on the day of my tests to have a final blood test and a ECG. Seemed like I had a lot to do that day but it was much quicker than i though. Arrived at 13.15 went straight in for blood test then went to the xray department. Was told to but a gown on and my dressing gown and told to wait in the waiting room. I was quickly called in and had a cannula fitted for the dye to be injected. I was then taken to the xray room and had a stomach and chest xray and told to wait in the waiting room again. less than 5 minutes later was called in for the scans. This took no longer than 10 minutes. They did some scanning first then injected the dye which they had hooked up to the cannula a couple minutes later all done. Was told to go and wait at xray again for another. Went in within 2 minutes. Had stomach xrayed again then told to have go and have a wee and come straight back for another xray. She even stayed at the xray door to wait for me so went straight back in. All done to had to get the cannula removed and get changed. I was then of for my ECG. As I didn't have a appointment for this I had to wait about 15 minutes. ECG done quickly and we had done was in the hospital at total of 2 hours 15 minutes i was very impressed. So now all i am waiting for is to see the consultant on 12/2/18 to get my results I also have a appointment straight after that with the nurses so I'm hoping alls good with me seeing the nurse after. fingers crossed. Anybody wants to offer any advice for us please feel free also If anyone wants to ask a question about any of the tests etc I will do my best to answer them. i will also update this post as I go along.
JMan
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Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: Test To Donate to Husband - My Story

Post by JMan »

All sounds brilliant.. Very best of luck to you both:)
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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emmamays1978
Posts: 13
Joined: Mon Jan 22, 2018 11:23 am

Re: Test To Donate to Husband - My Story

Post by emmamays1978 »

Well just back from the hospital. Alls good and can go ahead with the donation. Waiting for appointment now to see the consultant at Manchester royal. Any tips for before or after the op?
emmamays1978
Posts: 13
Joined: Mon Jan 22, 2018 11:23 am

Re: Test To Donate to Husband - My Story

Post by emmamays1978 »

Well after getting told last week that yes can go ahead. i just got 2 appointment 1 for a 24 hour blood pressure check and 1 for heart scan hoping this just part of the pre op going to ring co-ordinator when I get the chance. anyone experienced this?
freddyy
Posts: 29
Joined: Tue Aug 02, 2016 6:45 am
Location: Sweden

Re: Test To Donate to Husband - My Story

Post by freddyy »

Hi Emma.
My brother donated his kidney to me. He also did a 24 hour blood pressure test as well as heart scan. The 24-hour test was due to him having slightly above normal blood pressure when testing at hospital. The longer test showed everything was ok though.
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Test To Donate to Husband - My Story

Post by rheaybou »

Seems to follow the same steps my donor had at Sheffield.

Should be one final cross match to complete after the final tests (BP and scan) have been completed. For the stay in hospital go armed with things to do. Books, iPad with films, earplugs and eyemasks (wards can be busy during the night)

My donor liked my suggestion of a soft rolled up towel for the exit site - his was just below the belly button - to ease pressure when getting up. He has suggested something for trapped wind, they pump you up during keyhole so he struggled with that for a few weeks.

I wish you both the best of luck
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
emmamays1978
Posts: 13
Joined: Mon Jan 22, 2018 11:23 am

Re: Test To Donate to Husband - My Story

Post by emmamays1978 »

Thanks Freddyy and rheaybou. Freddy did having the 24 hour blood pressure delay the appointment with the surgeon? My doctor said all results was okay. My blood pressure was slightly high when I got there as I was late as it had snowed and took ages to get there. He re tested it when I went into see him and he said it was fine. Said I would get my appoint to go to Manchester royal with 4-6 weeks. Just wondering if they will wait now till after the test have been done. I have heard about using a towel or pilow nad plan to take one with me. Think were having the final cross match today. Hubby has go for a ct scan and they asked him to go in for a blood test. i have a appointment to go to the doctors for a blood test. Finger crossed
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: Test To Donate to Husband - My Story

Post by SKM23435 »

EmmaMays,

I would just like to say good luck.
It is a wonderful and selfless thing you are doing for your husband.
I hope all goes well.
Best wishes to you and your husband

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
emmamays1978
Posts: 13
Joined: Mon Jan 22, 2018 11:23 am

Re: Test To Donate to Husband - My Story

Post by emmamays1978 »

Thank you Sue
emmamays1978
Posts: 13
Joined: Mon Jan 22, 2018 11:23 am

Re: Test To Donate to Husband - My Story

Post by emmamays1978 »

Quick up date had 24 hour blood pressure check and heart scan. The blood pressure check wasnt as bad as i thought it was going to be. Just found myself clock watching all day to make sure Im sat down and relaxed before it went off. It did hurt a bit as well but I did sleep. One thing that did bother me was the nurse that put it on was very rude. She said to me when it goes off stop what doing and keep still. I still had to get home on bus and train and go to work so I said what happens if I cant keep still for them all she replied with "then you wont be able to do what you want to do" this got me a bit worried . Fingers crossed everything went okay. They wouldnt tell me when they took the machine off.
emmamays1978
Posts: 13
Joined: Mon Jan 22, 2018 11:23 am

Re: Test To Donate to Husband - My Story

Post by emmamays1978 »

Finally had the call to say everything was okay with the blood pressure test and now waiting on transplant team for a appointment. Fingers crossed its soon as husbands function dropped to 9% last week. I have told the doner team as well.
emmamays1978
Posts: 13
Joined: Mon Jan 22, 2018 11:23 am

Re: Test To Donate to Husband - My Story

Post by emmamays1978 »

Quick up date finally got appointment for this Thursday to see the surgeons at Manchester royal
emmamays1978
Posts: 13
Joined: Mon Jan 22, 2018 11:23 am

Re: Test To Donate to Husband - My Story

Post by emmamays1978 »

Visiting the surgeon was yesterday given the go ahead for 28/29 may
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Test To Donate to Husband - My Story

Post by wagolynn »

Best wishes to you both.
igor1974
Posts: 21
Joined: Sun May 02, 2010 2:35 pm
Location: United Kingdom

Re: Test To Donate to Husband - My Story

Post by igor1974 »

That's wonderful news Emma. My brother is in the process of being tested to determine whether he is fit enough to donate to me so fingers crossed. All the best to you both. Keep us informed.
igor1974

transplanted 1974
APD February 2018
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