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miocean

3 months post kidney transplant

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Yesterday was the third month anniversary of my transplant. The doctor said my kidney is doing very well. I am having trouble with my prograf levels. That is an anti-rejection drug that oddly enough also damages the kidney so it has to be carefully monitored. Thursday my level was 16 and he wants it around 8. My dose has been lowered and we'll see what the blood work on Monday says. Normally I would drop down to blood work once a week at this point but I might have to keep going two times until the prograf levels off. Unfortunately, when the prograf goes up, so does my creatinine so it was 1.3,not too bad but too high. I had a wonderful surprise last night. I thought I was going out to dinner with two couples and when we got to the restaurant and walked in I thought it was very crowded for as early as we were there. The sign said please wait to be seated so I was standing there when my friend said go on in. It ended up that all the people were friends of mine! My husband threw a surprise party for me. I was shocked and felt so stupid! It was a lot of fun and everyone had a good time.

 

I know I've had some good news lately but all is not great in my scleroderma world. A week ago I woke up. stretched my legs and my ankles felt tight. I could barely walk when I got up but they loosened up during the day. It continued to be that way and then my legs got very hard and hurt. They weren't swollen though. I discussed it with the sclero specialist and she said it was scleroderma. I have had very tight skin but it never hurt. In spite of it my skin score went down. My nephrologist felt them and said it wasn't fluid retention so I am trying not to worry. At least they get better during the day. I am not as short of breath as I was but I find myself gulping air, almost like a goldfish in the water. When I lay down I am short of breath which I have read is a symptom of PH. The sclero dr. said we will have to revisit Letairis in the fall and that I might have to have another heart cath. She also asked about my Raynaud's and I said if I get cold my fingers turn blue but they turn back to pink when I warm up. She said I might need meds. for that. I take enough already. It seems the answer is always more drugs. The calcinosis on my buttocks has become even more painful. I have learned to move in a certain way so I don't hit the spot that is so bad. At home I sit on pillows but the hard chairs I encounter out are painful. I finally ordered an inflatable donut. I will feel stupid but maybe I won't be in pain. My dermatologist said when I get the ok she can remove it in her office and she is a great cosmetic surgeon. My nephrologist said in six months I can have surgery and 3 are now passed so I guess it will be Sept. before I get any relief.

 

I tend to divide my life into two phases: before I got sick and after I got sick.. Before I got sick I was an active professional and artist, ran 3-5 miles a couple of times a week and swam a mile in the ocean every day in the summer. After I got sick I did nothing. Well, now that I am feeling better I am getting involved again. I am working with a group of women to start a local chapter of a national non-profit that grants wishes to both critically OR chronically ill children ages 3-18. I am Public Relations Coordinator! It is just getting off the ground but it is exciting to be productive again. If you would like more info about this group you can private message me. I have been inspired by so many of you who deal with this illness but are still engaged in life. While I was on dialysis I would read Amanda's posts about how there is life after scleroderma and I would think what life? I should have died when I stopped breathing and my heart stopped, it would have been better. The only thing that kept me going was the love of my husband and my love for him. Now I understand what she means. I feel so much better, I am much happier and am walking better. Don't ask me how a kidney does those things, I am just glad it happened. I am looking forward to living again and plan to do as much as I can while I can. You never know what will happen.

 

Sorry this is so long. Thank you all for your inspiration and courage. I am very grateful for this forum.

 

miocean


ISN Artist

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Hi Miocean,

 

We are all each others inspiration and courage! You have shown great helpings of both to all of us! The sufferers on this forum go far and above in both departments.

 

Thankfully the forum is here, that's all I can say! I hope you continue to thrive and enjoy every day of your new found vigour. Make each day count, that's my motto. Don't worry about the skin thing, my skin is a total bind at times but we keep loose. Haha!

 

Take good care okay?

Lynn x :flowers: :VeryHappy:

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Hello Miocean

 

How lovely for you! It can be overwhelming when we realise how many people there are in our lives that care for us, what a wonderful evening for you and your husband.

 

People read and will read your posts and realise that if you can come through what you have then they can come through almost anything as well. I too have thought "what life!" at times but I am one of those people who read your posts and realised that if you can come through what you have then I can come through almost anything as well.

 

Like I always say the best people have scleroderma...or are married to us! :wub:


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi miocean,

 

What a wonderful thing that your husband threw a surprise party for you! It's a wonderful thing, to share your joy with others over your successful kidney transplant.

 

You truly are an inspiration to others, and I'm thrilled for your newly found energy and endeavors.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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