Transplant

[Trayaurus]

I had a kidney transplant, 6 months ago. Was full of life, looking forward to the future. All of a sudden, feel anxious, exhausted, sad. Is this normal. Also feel guilty as im not doing anything with my life now, but should be as been given a 2nd chance at life and wasting it. Any suggestions please

[Charlene_Coxhead]

I havent had a transplant but I have heard this is extremely common and know 4 people that have gone through the same. Its known as several guilt, as because your struggling at the moment that feeling gets worse.

I would suggest speaking to your renal transplant team and ask to see the counselor as I'm guessing people you love or friends dont understand why you feel this way and keeping these feelings bottled up.

Yes you have been given a wonderful gift but it doesnt come without its problems with medication regime and new restrictions and guidelines and I guess your worried it will reject or your get some sort of infection to risk the transplant.

What your forgetting is your body and your mind have been through a lot. I'm not sure if you had a live donor or deceased donor or if you where on dialysis. Either way you have had this disease and it's been part of you for many years and always there that you needed a transplant and now this has happened its like every thing has gone flat.

I wish I could help more. I just wanted to say your not alone and you are doing well you've given your body time to heal now it's time to let the mind heal.

Maybe start by setting small goals like a walk aday or a course online. Definitely speak to the transplant team about a counsellor I really think it's the best way forward.

There is always someone hear to listen. Take care

Charlene xx

[Trayaurus in reply to Charlene_Coxhead]

Thankyou for your advice x

[WYOAnne NKF Ambassador]

I had a transplant and remember those first few months well. First are you on prednisone? This med can make you feel very emotional and sad. Your body is also still getting used to your other immunosuppressants. I had a rough time getting on the right dose. When I was on the right dose and my prednisone was reduced I started to feel a lot better.

If you are not doing so, get out in your neighborhood and walk. Start slow until you are able to walk 2-3 miles. You find that this will start to make you feel better. If you are able, go on a trip. Go to see family, or go to an all inclusive resort in the Caribbean. I had my transplant on Oct 15, 1999. In July, I was hiking in Glacier National Park in Montana. The mountains definitely put everything in perspective for me.

Don't know where you live, but start volunteering with you local DONOR NETWORK. That's what I did. Before long I was also doing public speaking - telling my story. I found it very rewarding and felt like I was "giving back." Most, also have a lot of events that they need volunteers for.

Now, I am retired and we travel every chance we get, or our pocketbook allows. I have learned to take advantage of this GIFT I was given. I have also let my donor family know what I have been able to do thanks to their gift.

So, just start with the walking..... If you still are having issues you need to talk with your transplant team. Maybe they can decrease your dose of your immunosuppressants, etc. The team is there for you!

Take care and let me know how you are doing.

[blackkat2]

Hi, Trayaurus--I experienced the same sort of thing after my transplant (almost 2 years ago). No doubt it's a combo of meds and stress but, whatever the cause, you can work through it and it will get better. I agree with the others who suggest you seek some help, otherwise it's hard to keep perspective while you're going through it.

[Transplant314]

I am seven months out and feel exactly the same. My guilt and sadness came in the first couple of months questioning if I was worthy of this gift. I now feel like I should be doing more with my life now that I have a second chance having been on dialysis for only six weeks before my donor came through.

I do not work and been having a hard time trying to figure out how to spend my days.

I am exhausted all the time sometimes napping two times a day. I am reminded that the transplant is major surgery and at 63 I do not heal like I once did. The medication seems to take a toll although thank God I am not on prednisone.

Try to get some counseling if for nothing else to find out your experiences are quite typical.

Good luck you are not alone in your post surgery experience

[Trayaurus in reply to Transplant314]

Thanku for the advice, that is exactly how i am, theres so many things i want to do but just have no motivation or energy, which makes me feel so guilty. I am not on predisolone, i had that changed. How do u get thru the tiredness

[Transplant314 in reply to Trayaurus]

I nap and then beat myself up about it. I do find if I am out and about I am less inclined to nap. Some days the exhaustion is so prevalent I feel it in my body I just listen to my body and lie down. I have started to exercise and do some yoga. Now I am looking i to volunteer or work a 2-3 days per week

[Trayaurus in reply to Transplant314]

Thankyou, i supose i will have to push myself, tired or not. I want to go swimming so, keeping your advice in mind, i will start in the morning, thankyou

[Transplant314 in reply to Trayaurus]

Good luck and I guess the alternative of dialysis is worse but I completely get where you are coming from.

[Trayaurus in reply to Transplant314]

Thanku. You sound like your going through exactly the same feelings, so i guess this is normal

[Transplant314 in reply to Trayaurus]

I. Wish I knew what normal is. You are not alone

[JennieZ]

I cannot tell you how it feels to read this post. I have struggled in the same way and it brings tears to my eyes to know i am not alone. I am a year out and still daily feel guilt, then shame then all sorts of other mixed emotions. I want to make every second count and make my life "worth it" and then beat myself up that i am not. It is such a struggle. Thank you so much for sharing and please hang in there.

[Trayaurus in reply to JennieZ]

Thanku jennie, it helps to know that it is quite common to feel this way after. I wish u all the best x

[mtwskk]

It’s the drugs you have two choices, more drugs anti depressants and I don’t recommend them they are hard to get back off of the. Secondly, give that kidney a name a cherish it and know that you are special and God loves you. Then realize your alive and no longer on dialysis and you are so lucky. Then act normal and be happy. Or as my friends say suck it up buttercup

[Dara3351]

I am 8 months post transplant and have gone through so many stages. Your body is getting used to the drugs in your system. My meds have been changed many times according to my labs. My only side effect is intense sweats and vomiting. I now have an appointment to see my GI specialist. I am thankful I am no longer on prednisone even though it was only 10 mg. I gained a lot of weight and was a couch potato. I am now redecorating my condo and that has brought me out of my funk. Please speak with your Dr. I live in Scottsdale and we are susceptible to Valley Fever. During the first six months the transplant team had me on fluconazole which my liver did not like so they stopped the drug. My nephrologist wanted me to take another drug called Itraconazole and after reading the side effects I refused to take the meds. I spoke with the transplant team and they did not want to interfere with the nephrologist that they referred me to however he did call me and told me not to take the drug. So feel free to question your doctors, ask them for advice, and do what you think is best for you. I know that when I get out and go grocery shopping, go out with friends I feel much better. Hang in there, you will find every month that goes by will be better than the one before.

[Trayaurus in reply to Dara3351]

Thankyou for the advice x

[smmahone]

I am 8 months out and have the same experience. I think it us all the meds. I also lost a lit if hair which has made me depressed. I dont feel the guilt as much as i feel unprepared for all the the stuff that comes with this.

Thank you for making me feel nit so alone. I do find exercise helps

[Match62017]

I did the same thing right around the half year mark and I started staying in more and it only got worse. I had to get out of the house and keep my brain focused. I’m convinced it’s the medicine. The prednisone is the one I have the most problem with. I’m a little over two years post training and I’m down to prednisone every other day and I’ve noticed if I take it on an empty stomach I have lots of problems with it from feeling blah to inability to sleep through the night. My advise is keep your mind stimulated and keep a journal of what you are grateful for and read it when you are feeling down. This helped me a lot. Best of luck.

[Transplant37]

Oh yeah. I knew that feeling. There is a lot of feelings like that as you try to find the new normal. A mix of survivors guilt thrown in with count your blessings. Like any major life change it takes a year to find the new normal. Best thing you can do for new Kidney is to take care of yourself and that means to not beat yourself up.

There will be plenty of time to give back, do something worth while. Volunteer, write thank you notes, check on your friends, look for kindness. Sounds like a cliche but it works. Be well.

[Mgt8]

Hi,

I am a kidney transplant recipient.

I was at a medical research meeting recently with a number of people who had all had transplants; Heart, lung, pancreas, kidney.

Every one of us spoke about feeling depressed at some time after our transplants.

The medications of course may well contribute to this. However, as we talked, there seem to be many other factors involved. We have all been through huge medical procedures, with many unforseen problems along the way. We have had various emotional ups and downs and long periods of uncertainty both with, and without our loved ones.

It is not difficult to see how this would affect our thinking and ability to cope.

Our mental health is something that we need to talk about. It has been the subject of many recently highly publicised media stories and public awareness adverts.

The people I spoke with, suffering from feelings of depression all agreed that this is something that needs to be followed up and support needs to be available after transplant during our hospital visits.

As it does not seem to be followed up at the moment. It is up to us to bring it up with our medical teams; highlighting the need.

We are not alone in feeling like this as this thread already shows.

Getting out and about, has been mentioned here as helpful and many of the national charities have peer support groups who meet socially and they are only a quick google away.

Wishing everyone well.

Mgt

[AndrewT]

Dear Trayaurus,

Hold Up, there Cowboy.....You just had some Major Surgery! Hells Bells Boy (or Girl) you ain't even let the Paint dry yet! Came at Time, not so long ago, when ya had to wait- at least a Year, before you could Get Back On That Horse- and there's you Galloping Into The Sunset before the Beans are Done...….

What I'm trying to say, in case you haven't Gathered It, is GIVE THINGS TIME. Six Months is, VERY much, only the beginning. (Do get some Blood Tests done though, just in case, this is a sign of Rejection).

I'm sure that your Fine Trayaurus, interesting 'Name' that.

Warmest Wishes

AndrewT

[Trayaurus in reply to AndrewT]

Thanku for your advice. My kidney is working well and all my bloods are fine, so i cant understand why im exhausted all the time x

[Ish123]

If creatinine and all other blood reports are positive..then enjoy and go for a welfare or any other work ..so u feel satisfied..do some thing for humanity or any good deed as this is your ,2nd chance....think positive