adjel

[Jenny]

Sorry, I haven't written lately, but I got through the dialysis process so well with your help, that I am having trouble getting through the transplant. Adjel got the transplant on August 28. He is still in the hospital. He might go home tomorrow. He also has other medical issues to deal with. One of Adjel's older sister's is the donor. She spent three days in the hospital and is home now. With dialysis there is a diet that must be followed, I understand that. Adjel now is on a somewhat protein diet, until he heals. They are weening him off of heparin and onto comundin. Is there a special diet after transplant. They said low sodium and low cholesterol, which doesn't seem to hard to follow, because he wants to cut down on the meat anyway. Now, they are saying that he needs a higher level of potassium and for 4 months they said not much. We are having trouble switching our thinking. I t seems to change a lot. First they say no protein, because they want to preserve the kidney, then they say to load up on protein, because they are not trying to preserve it anymore. Now they say just enough protein in order to heal. Adjel's mom says that he has to discuss everything with his doctor now and after the transplant. Does that mean every time he wants an ice cream soda, which has a lot of cholesterol in it, he has to talk to his doctor. I also have been in a hotel room right across the street from the hospital with my mother in law, but I live just a mile away. After the transplant, he was put in a regular room at first, then they moved him to an ICU room, because his blood pressure dropped to 94/50. It feels like this will never end. They say now that he has more freedom, if he gets out of here. Adjel's mom says that Adjel is not the one in charge of his eating. The big huge doctor is and that Adjel is a robot who is only supposed to do what the big huge doctor says, because doctors know everything, I got news for you, they don't. And every time they tell you something, well tomorrow comes and it is the exact opposite. It doesn'tseem to ever stop. Adjel is in control of his own health and we are not going to have some doctor say something and then it switches. It is really confusing. Going out to restaurants was never in "they're" plan, but we did it anyway, because it got so late that there wasn't enough time to make spaghetti, and he couldn't have the tomato sauce anyway. Now they call a transplant more freedom, it isn't, you have to go in for labs every week or month and then you can readjust your own diet to that. Everyday they want you to take these antirejection pills and also take his blood pressure and temperature everyday. It feels like it just went from bad to worse and there is nothing we can do about it. I want some advice on how to handle this. Thank you.




EDITED:  Moved post to proper thread "Transplants"  - Goofynina/Admin.

[Roxy]

Hey Jenny, I just had my transplant three and a half months ago and  it definitely is an adjustment. I just see what the doctors say as a guideline. Just like when on dialysis, the labs will help you determine what will be right. Depending on the medications he's on will also tell you what you need to watch out for because of side effects. Which immunosuppressants are they using? I was also told to load up on the protein, at least 7 or 8 ounces a day. The protein helps with the healing process and gives more strength to the body as it helps build muscles. After a while, the adjustment should get a little easier. Just take it one day at a time. As time goes on the labs will get to be fewer and the number of pills taken each day should go down too. It will seem well worth it when Adjel starts feeling better and can do things that he might not have been able to do while on dialysis. We're all here for you and I hope things get better 

[keefer51]

I believe a transplant is just a bandaid or temporary fix to the real problem. When i received my first transplant i remember waking up and feeling great. I was lucky and was only in the hospital around a week. My brother was home in about four days. The best way i found out to handle doctors is to become a bobble head doll. They love to watch you agree with everything they say. Be very compliant and you will get out of the hospital faster. I saw them afterwards every week. After a couple of months it went to once a month. After a couple of years it went to once a year. It stayed to once a year.

[okarol]

Hi Jenny,
My daughter is almost 8 months post-transplant and she has a much better physical and emotional status than she did on dialysis. But I agree, the initial stress of surgery and follow up was incredible, maybe even more for the caretaker than the patient! There are a lot of labs, appts. and new routines and meds the first 3 months. It is completely different than being on dialysis though, because it gets easier every week. Dialysis won't get less.
What worries me is that it doesn't appear that the transplant team prepared you for all these changes. I hope you get some clearer guidance with regard to diet, but common sense would suggest to keep it simple. They did tell us to increase protein and drink lots of fluids, which is a huge change in the dialysis mindset, and that took some adjustment for Jenna. Every minute someone would be lecturing about the importance of drinking tons of water, which really pissed off Jenna after the hundredth time. The main thing is to have a healthy diet. A great deal of the initial medications Jenna had were supplements such as vitamins, minerals, along with antifungal and antibiotics.
The appointments were important so the team could moderate and fine tune the immunosuppressants. The weighing is to be sure there's no fluid retention, the temp. readings are to watch for a fever from infection, and the blood pressure measurements are important because they will decrease these meds as the kidney does it's job. All of this monitoring at home drops off as the patient stabilizes. The labs and appts. get less and less every week, and each decrease is a cause for celebration because it means the patient is stable!
I know it's exhausting and confusing, but hang in there! We live 2 hours from the transplant hospital, so we stayed near there for 5 weeks, then drove back and forth for 5 months. That left my husband and other 3 kids at home. It was very difficult, but seeing Jenna so healthy now makes it worth it. Best of luck to you!
 

[kelliOR]

Hi Jenny,

It sounds as if Adjel is on the post transplant rollercoaster that we are lucky enough to have a ticket for  . 

 The first 6 months are quite an adjustment. Plenty of information to process while recovering and healing.  Meds, labs, appointments will be changing weekly, sometimes within days!  Its worth all the hastle.  As far as Diet, generally what is recommened is a " Heart Healthy " diet combined with regular physical activity when recovered.  Transplant teams often include a dietition/nutritionist.  If one hasn't seen Adjel yet, request a consult.  It should be included in every hospitalized patient. 

hugs, kelli

[Romona]

Hang in there, it gets better!
It will be frustrating and confusing for awhile. It is very hard to let go of the pre-transplant diet. Once things stabilize it will be so much better. You have alot of help here. 

[Jenny]

Thanks for all the support.  Adjel got the transplant in late August. He spent eight days in the hospital, then three weeks later he went in for nine days with a surgery in between, and now it is November and it showed up again or something like it. There is a blockage between the kidney and the bladder. We live five minutes away from the hospital by car. Fifteen minutes by bus. Adjel has been out of work since the transplant. I can deal with the blood tests. He's been having INR's most of his life, so this is no different. He is on prograff, which gets adjusted. He is on cellcept and predisone. He also on six or seven other medicines. Last time when he went into the hospital, he brought the car and the admitted, and the car was sitting there for five days until I got some people with drivers licenses to move it. That was nerve wracking. We got the car out on a weekend, so there was no parking attendant at the booth.   When he went in the hospital the last time, they took him off warfarin and put him on heparin, which to me is fine. Heparin has been around for decades and it works. Then later on, they took him him off it Then they started him on the warfarin again going a little at a time, trying to get it up to 2 or 3.  They eventually sent him back over to thromobilia clinic and let them deal with it. They had no idea what they were dealing with.

[stauffenberg]

The intense schedule of medical tests in the period immediately following the transplant will quickly taper off, until you will eventually find yourself seeing your doctor only slightly more often than the normal, healthy person.  I have now had my transplant for more than two years, and I have to report for medical tests only once every three months and see my doctor for a check-up only once every six months.  That is a huge lightening of the medical burden on my life compared to dialysis three times a week!

I don't understand why transplant patients somehow think it is a burden to have to take a large number of anti-rejection pills each day.  So what?  It is not much different than having to eat an extra handful of candy twice a day, and that is nothing at all in terms of inconvenience compared to dialysis.

Keep in mind as well that during dialysis, because it replicates only 10 to 14% of normal renal function, you are in a pertually toxic state, filled with a variety of poisons which your natural urination should be removing from your body.  You suffer damage to your nervous system, to your vascular system, to every organ in your body, and your life expectancy is drastically shortened.  With a transplant, in contrast, your lifespan suddenly becomes two to three times longer than your life expectancy on dialysis, and the decline in your health over time is much less than on dialysis.

While additional protein consumption might be helpful for healing in the immediate post transplant period, studies have shown that a protein restriction diet helps the new kidney to last longer.  Also, keeping the lipid level of your blood lower can extend the survival of the new kidney.  I find that maintaining the same salt restriction diet I had as a dialysis patient also keeps the anti-rejection drugs from elevating my blood pressure, so I can avoid all the unpleasant side effects of antihypertensive medication.

[Jenny]

   I wrote this morning, but things eventually changed. Adjel is now in the hospital, but this time, he drove the car home, and we took the bus downtown. I had a few errands to run, then I came back to the room, but he was gone; they took him toi have an ultrasoound, so that they could see where to put the drain. Then I remembered that I had didn't have my backpack with me, so I lefdt again, and retrraced my steps, and found it. When I got back to the room, he still was not there, so I waited for him. I walk all over the place, so I did not mind going back. This time, hopefully they will do the warfarin right. What he is in is a teaching hospital that also does lots of research on how to do things better and easier. Thanks for the support.

[Romona]

Jenny, how are things going now? 

[Sluff]

Wow!1  I can't believe I missed this thread..geeeezzz. So sorry Jenny. Please let Adgel know my best thoughts and prayers are with him.

I hope things continue to improve.

[lola]