Waitinf for a double transplant and shingles

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

Moderator: administrator

Waitinf for a double transplant and shingles

Postby onehopeonelife » Sun Jun 26, 2016 6:15 pm

Hi all,
I am new to this site and have only stumbled across it today.
I had a live kidney transplant in 2007 which was donated by my dear mum. Having made it through that operation my life improved immensely. I was full of life again and appreciated life a lot more. I felt very blessed. I was then given the option of going on a waiting list for a pancreas. This I received in 2009. Unfortunately due to swine flu and two bouts of cmv I lost my transplanted pancreas and damaged my mum kidney.
I am currently on a double transplant list for both organs, been told this may never happen as I am 100% sensitive (due to many previous blood transfusions in my life)
In May 2013 I met the lady of my dreams, she had a second nature to all my diabetic complications, nothing was ever too much trouble. I had found my soul mate, confident and lifetime partner.
At the beginning of 2015, there was a sudden bereavement in her family. I tried to support her in everyway. She obviously was stressed, heartbroken, grieving and as a result broke out with Shingles. I was advised by many specialists not to visit her whilst the virus was active. My immune system is poor and I was scared of contracting the virus as many of the anti viral drugs were becoming immune to my body, My options were very limited. I was put in a position which changed my life. Having spend nearly 10 days away from my partner, I still question whether I did the right thing ?
It is true that I was not there for my partner, whilst she grieved, I did make continuous contact with her but not in person. She ended the relationship as she felt I should have put my life on the line to comfort her.
A year as gone by and we have started to contact each other now, we both have feelings for one another... shingles and poor immune systems do not go together and I have to live with this... for what precious time I have remaining,,
The nhs websites states that if you have had chicken pox you can not normally get shingles, is this true with immunosuppression transplant patients?
My ex still feels I let her down at one of the most important times in her life... can anyone suggest anything to help this relationship get back on track ?

Thank you in advance to all those that reply

I would rather not give my name as its still sensitive to us both CP
Last edited by onehopeonelife on Mon Jun 27, 2016 8:00 pm, edited 1 time in total.
onehopeonelife
 
Posts: 2
Joined: Sun Jun 26, 2016 5:07 pm

Re: Waitinf for a double transplant and losing a loved one

Postby SKM23435 » Sun Jun 26, 2016 8:48 pm

I'm sorry to hear about your last few years. They must have been tough both physically and emotionally.

You get shingles as a result of the chickenpox you yourself had years previously. Following the infection the virus lies dormant inside you. It can be reactivated at times of stress, illness or low immunity and comes out as Shingles. Shingles is a blistering rash and each of the blisters contains the chickenpox virus. You can't catch shingles from someone with shingles but you can catch chickenpox. People with shingles aren't as infectious as those with chickenpox especially if the rash is covered up. There have been recent posts on here confirming that transplant patients with their suppressed immune systems are advised to stay away from people with chickenpox and shingles.

I suspect your lady friend was at a particular low in her life with her bereavement at the time of your separation. Hopefully now you both have a fresh start together. Good Luck and I hope all goes well for you.

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
SKM23435
 
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: Waitinf for a double transplant and losing a loved one

Postby onehopeonelife » Mon Jun 27, 2016 7:19 pm

Hi Sue
Thanks for your reply.

I have researched Shingles alot but have been told that if I was to stay in the same room has my partner at that time , the chances of myself developing it were very high. It is an air borne virus, So much so that I was advised to stay away until the virus boils had stopped leaking.
I totally understand that shingles can not be caught from another as its your own immune system that re-activates the chicken poxs.

I was told by specialists that if I developed Shingles I could be in a very difficult place as many of the anti-viral drugs don't appear to do the job.
Yes I was obviously scared of having shingles and potentially dying from it. I know my immune system is very low, its a real pity that my ex partner does not realise the complications I have had.
I have had two biopsies on my kidney and had numerous trail drugs to tweak the pancreas to function but viruses got the better of this organ.
I now find myself facing a double transplant without the support of my partner.. sometimes I really wish I could turn back time. I am just hoping in time, the ex will realise that I wanted to preserve life and be with her for a long time.
Transplants although a gift for life, which I do appreciate deeply, it can also raise many questions of doing right and wrong...

I suppose the question is I would like to know from fellow transplant patients is did I make the right decision by staying away or was I foolish and dessert my loved one ?

CP
Kidney transplant 2007
Pancreas transplant 2009
On Waiting List for a combined double transplant
onehopeonelife
 
Posts: 2
Joined: Sun Jun 26, 2016 5:07 pm

Re: Waitinf for a double transplant and shingles

Postby SKM23435 » Mon Jun 27, 2016 8:59 pm

I think in the circumstances you made the right decision.
I'm just sorry your partner doesn't understand.

Best wishes
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
SKM23435
 
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm


Return to The KPG Forum

Who is online

Users browsing this forum: No registered users and 11 guests