2 months Post Transplant in 2days - Kidney Transplant

Kidney Transplant
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2 months Post Transplant in 2days

Trouper
Trouper
19 Replies

Hello everyone!

I am a new member here and was really happy to found this group.

I am 27 years old and of my kidneys failed due to HSP (Henoch Schonlein Purpura) April of last year.

I was on hemodialysis for a over year and I am super blessed to received a call from my Transplant Center back in July that they found a match for me.

I am in 2 months post transplant now, been doing good with labs and but still anxious with the Dos and Don’ts with this little bean.

Questions:

1. Is it okay to drink coffee daily or should i stop it?😶

2. Is it normal to still have pain with the incision site even now that its been 2months?

3. When it comes to traveling, is it okay to go other State with 3months post transplant?

4. I’m starting to have pain at the back of my head and neck for 3days now. My bp is normal.. is this something to address with my transplant team or its normal?

Thank you!

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JennieZ

Hello, congratulations on your 2 months! I had incision pain to varying degrees as long as 8 months after. Remember, they sever large nerves and small so as they reconnect and grow, i felt pin pricks and pain. but it went away (i am 1 year 2 mos). I drink coffee daily and love it. I traveled 5 mos out to another state and internationally (with permission from transplant team) at 7 mos. I travel now for work quite a bit and have not had any problems. Best of luck!

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Trouper
Trouper
in reply to JennieZ

Thank you JennieZ.. Thank you, felt better now. I was a lil worried since pain comes in and goes. Not sure if im doing something thats aggravating it.

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Transplant2018

Congratulations on your transplant and recovery. As to your questions: I drink decaf coffee daily; still feel some sensitivity (not pain) at the incision site 9 months out when I do ab exercises, never had pain in back of head/neck. I travel for work and began domestic travel 6 weeks after and international travel 5 months after my transplant (bleaching everything on the planes, wearing a mask, knowing where there is a hospital with a transplant center). Best to you!

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Trouper

Thank youuu! I have discuss about visiting other State but my transplant team is against it😩. What exercise have you been doing on the 1st few months after surgery?

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Transplant2018

I began with lots of daily walking and gradually added slow jogging. After about 6-8 weeks I returned to the gym and started taking classes (conditioning, Pilates, yoga), always being careful to back off if I felt much from the incision site. Gyms are FULL of germs so I bring my own mat and sanitize everything I touch, including any equipment, doors, faucets.

Understand that all of us enter and respond the the transplant process differently. Although I am much older than you, I had a pre-emptive transplant meaning I was never on dialysis and therefore I probably recovered more quickly. Listen to your transplant team and to your body.

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Transplant314

You should always talk to your transplant team even if you think the topic is mundane. Each patient is different.

Pain at the incision site is very normal. I am 7 months out and I have twinges of pain when I stand up. My team said it could take up to a year. The surgery cuts into. Your abdomen muscles which take a good deal of time to heal.

I drink a cup of coffee now every day. Early on my nephrologist was concerned that coffee is a diuretic and suggested I limit my coffee intake. Check with your team.

Three months for travel is pretty typical. I traveled by car at two months because I had a family event I could not miss. My doctors told me to get out and walk every couple of hours.

What ever pain you are having you should you should contact your team. It may be nothing but you do not want to take any chances.

Congratulations and good luck.

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Donaldson0007

Congrats! I am 4 years post now and drank coffee since coming home. That stated, I only have 1 cup per day. I was not advised about not having coffee, but was told by the transplant team no teas, or dark soda or dark alcohol.

I have traveled frequently since, including 2 months after the transplant, but I did get sick on that trip. Possibly fatigue, maybe I picked up some germs etc. Be sure to pack wisely, take extra meds in case of delays or mishaps while traveling, I have dropped plenty of meds on the floor. Take sanitary wipes and hand sanitizer. I wipe everything down no matter where I stay. I was advise that when I fly, or take mass transit, I should wear a mask, but the Docs said it is to keep people away from me, ha ha!

I still get phantom pain at the incision site, and at the drain port site, and sometimes terrible itching in those areas. Docs said it was nothing to worry about.

The head and neck pain may be a result of laying differently when you rest/sleep, and adjusting your body trying to take it easy while you heal, as well as tension - this is a big deal and its stressful! But yes, talk to your Docs, always talk to your Docs. Congrats again and good luck!

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mhawk123

Good questions and thanks for asking us. I would still advise you to check with the doctors taking care of you as everyone is a little different. I am 23 months out from kidney transplant and I have had a roller coaster ride. My immunosupressive medications did effect my functionality as my WBC count dropped so low. The first three months I had to stay away from many people and wear a mask when I went out to appointments. It was during the winter months so I was so afraid that I would catch a bug.

I switched to decaf coffee my first six months , but was encouraged to drink water daily instead. I still have not traveled internationally as my WBC count has barely reached the normal count. It is all a process. Just be careful.

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Drdetroit

I'm almost 8 yrs post transplant, drink one cup of coffee a day. Had 3 rejection within first 2 years, but no pain ever. I did go 200 miles in a car to see my son graduate from Penn State 3 weeks after transplant & it was very hard & painful. Congrats on your transplant. Drink lots of water. GOOD LUCK

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WYOAnne
WYOAnneNKF Ambassador

Congratulations on your transplant!

Next month is my 20 year kidney anniversary!

First, most of your questions, you should be asking your transplant team. We are all different and what is good for one is not for another. I can only speak from my own experiences.

1. I drink a cup or 2 of coffee everyday.

2. Yes, the pain is pretty common. Your immunosuppressants make you heal more slowly than anyone else. Also when they do surgery there are a lot of nerves in your abdominal area and takes them awhile to calm down.

3 There should be no reason you can't travel as long as you take your meds and have your labs done as ordered.

4. Pain in the back of head/neck is probably not connected to your transplant, but by all means you need to tell your transplant team. If it continues, they will probably want to check it out.

One piece of advice - no matter the issue, or how trivial you think it is, let your transplant team know!

Best of luck to you

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Trouper
Trouper
in reply to WYOAnne

Thank you so much! I will discuss it with them on my next appt.

I went see my PCP today and was told that its just probably a tension headache. Will observe it for 2days, if it’ll get worse or doesnt relieve by pai meds then they will have to take a closer look at the head and spine.

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PeterChao

Congrats on your transplant!

I received my kidney on January 24th of 2018. I had nerve pain around the incision area for at least a few months after my transplant, it’s not uncommon.

I don’t drink coffee, so I’m not sure if there are concerns with that. But it’s definitely something you should ask your doctor about. Every patient is different.

You should also check with your doctor about traveling. I think it comes down to your labs and immunosuppressant levels. It shouldn’t be a problem, but always good to check.

Stay hydrated and always take yours meds as prescribed. Be your own best advocate!!

Good luck with everything

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WYOAnne
WYOAnneNKF Ambassador
in reply to PeterChao

Hope you are doing well PeterChao! Haven't heard from you for awhile, hoping that is a good thing!!

My husband, my youngest daughter, her husband and me spent a glorious week in Glacier National Park the end of August. Had fun hiking and taking in the beauty of the park. Hope you are able to enjoy your GIFT and are doing well!

Take care...

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PeterChao
PeterChao
in reply to WYOAnne

Hi WYOAnne! I’m doing pretty good, thanks. That sounds like an amazing trip.

I’ve had a rejection concern about a month ago, but hopefully that’s behind me now. We have a trip to Thailand and Taiwan at the end of December, excited about that.

Hope you and the family are well!! Thank you for reaching out.

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Sonnyboy1958

I am 7 1/2 months post and I drink coffee everyday. Also I still have incision pain on and off, remember it really takes one year to completely heal and I have heard some people still have some incision tenderness after that. As far as travel I really have not yet but I am cleared to travel in the U.S.

Also Congratulations. Just listen to your body and do not over do it.

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DexterLab

I am 7 months out from a living donor transplant and am doing well. Coffee was ok with the docs as part of the 2+ liters a day of fluids. Good thing, because my plays well with others coefficient is much higher when I am adequately caffeinated. The other post-op worries the docs had was picking up an infection and doing too much and giving myself a hernia at the incision. They would be reluctant to operate on you when you are still very immunosuppressed. Take care!

Congratulations on your new kidney! Take good care of yourself and the kidney.

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nharper

Hi I am 32 years out I learned to do everything in moderation. Live life

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AndrewT

Dear Trouper,

First of all, let me add, MY Congratulations to you. To answer your questions, not necessarily in the order you asked them. Yes you can, and frequently DO, get pain/ Irritation near the Transplant site. (I'm not too sure about the Neck Pain though, maybe 'Mention' it- at your next Check Up.) As regards 'Everything Else'....Yes in Moderation, you will get to 'Read', your own Bodies, "Signals" on this- if this doesn't Make Sense now, it soon will.

I gather that you are in the USA, whereas I'm in England, so advising you- on Travel- is necessarily difficult. (you could go 600 miles, in one State, I would be almost The Length on my Country!)

It is VERY 'Early Days', in terms of your Transplant, and I'm sure that you are having VERY Regular 'Check Ups'- I would mention, any of these questions/ fears, to you Transplant Team.

All that remains is for me, to wish you, VERY GOOD LUCK- from us all.

AndrewT

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Trouper
Trouper
in reply to AndrewT

Thank you so much!

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