Goodbye Fistula

[willowtreewren]

It has been two and a half years since Carl got his wonderful transplant. He is doing VERY well. The only "problems" he has is the increased sensitivity to the sun and his hemoglobin gets too high! It runs higher than 16 at times and they have to "bleed" him to thin his blood out.

In the meantime, his fistula, a real beauty, has continued to grow and grow. Lilmunchkin was amazed when she saw the picture posted below. That fistula has become a liability now. Carl went to his vascular surgeon yesterday and the plan is to remove the part on his lower arm. At this point, it has grown all the way into his arm pit, so the surgeon will leave the upper arm part in case he ever needs it again. Carl does lots of work outside and I'm always worried that he will cut the fistula and bleed to death. The surgeon said that that was a distinct possibility!

So, Monday, August 5, the lower part will be tied off and removed. I will miss it. But then, there will still be a rather amazing upper arm fistula still there. I hope we never need to use it again.

Aleta

[willowtreewren]

Oops! The picture is upside down, but you get the idea! 

[AnnieB]

Wonderful that Carl's transplant is doing so well! And it's great that he will be able to have the lower part of his fistula tied off, and keep the upper just in case. Hopefully, he will never need to use it again. 
Anne

[MooseMom]

Oh my, that's one impressive fistula!!  I've never seen anything quite like it.  I'd like to know more about the "tying off".  What exactly is done during that procedure?  I've searched online for that information but can't find anything.

So glad Carl is doing well!  That's tremendous!

[boswife]

WOW!! thats amazing!!  It'll be good to get it out of the way and.,,,out of the way!  I too hope he never ever needs again!!!!  Im so glad he's doing so well.  I often think of ya and how happy i felt when he got it.  I was just starting nxStage and sooooooooooooooooo fearful of it, and you were so cool with it...  lol   all the best to you both 

[willowtreewren]

MM,

According to what the surgeon told Carl yesterday, he will close it off at the lower end and up near his elbow. Then they will "pull it out."

Carl said that the surgeon put his fingers on the fistula a certain way and the whole thing just went flat. 

He said it was just plain weird. 

I'll let you all know how the procedure goes. He is supposed to check into the hospital at 1:00 PM Monday for a 3:00 PM procedure (outpatient). But he can't have anything to eat after midnight. This man has NO extra fat on his body and often has to eat in the middle of the night just to make it until breakfast. I have no idea how he is going to make it without food that long. That is going to be the worst part of it!

Aleta

[willowtreewren]

Just an update. Warning: Long!

The vascular surgeon tied off the fistula, but did not pull it out. It managed to refill with blood so it was as big as ever. When Carl went back to see the surgeon for the follow up, the doctor said that it wasn't supposed to do that. Hmmmm. He offered to go BACK in and take it out, or said that Carl could just leave it and the coagulated blood would eventually reabsorb. It was quite uncomfortable, but Carl opted against another surgery.

Fast forward a few months. Carl was doing some heavy work outside one weekend and his arm above his former fistula got a bit swollen and sore (and hurt a bit down through his lower arm). It improved after a few days, so he thought nothing of it. But THEN....

Last weekend, when the weather turned nice, he got out clearing out brush and chopping wood, and being his normal active self out-of-doors. Sunday evening he showed me his arm. It was VERY swollen and VERY red. He got on line to see what he could find out. I was thinking ER would be a good option, but he thought he should see what it was like on Monday. It HAD improved some by Monday, but he still called his PC physician and made an appointment to go in Monday afternoon. Well, things started happening fast. His doctor sent him to the hospital to get an ultrasound of his blood vessels. After that, the hospital sent him back to his doctor. They found an aneurism and blood clots. His doctor sent him back to the hospital where he was admitted. Of course, he had the car and I was stuck at work, but one of the staff dropped me off at the hospital on her (or rather out of her) way home. They put him on the transplant floor since he has a transplant. They are VERY protective of their transplant patients there.

So Monday evening (after another round of ultrasound), the head of transplant comes in to take a look at Carl's arm. He admits that he is quite confused by the size of Carl's blood vessel. Then I showed him a picture of what Carl's fistula looked like before it was tied off. THEN he understood what was going on. Since the blood clots in the ultrasound showed up in the enlarged artery, they put Carl on a heparin drip to save his hand. Then they decided to do surgery on Friday. They hoped to go in and repair the aneurism, and failing that, give him a graft. They could not find a vein in his legs large enough to use, so they ordered a cadaver vein to have on hand in case they needed it.

Surgery was yesterday. I didn't get to the hospital in time to talk with the surgeon (head of transplant) immediately after the surgery, but he came by last night after Carl was back in his room. There was a very large aneurism on the artery, but no blood clots. What the ultrasound was picking up was that the walls of the artery were very thick from the years on dialysis. They also found a very large vein under the artery that they were able to use for a graft, so they did not need to use the cadaver vein.

Now Carl has an 8 inch incision in his arm, but I was able to bring him home this morning. Because he is on immunosupressants and prednisone, the doctor said that it will take him longer to heal and he should do no lifting for at least a month.

At one point during his stay at the hospital this week, Carl could overhear some conversation outside his door and it seems that the vascular surgeon is going to catch h3ll over how he handled tying off Carl's fistula. 

I'm exhausted. Carl and I usually work ten-hour days. With his absence from school, I had to do both of our jobs. The rest of the staff pulled together, too, and a parent came in to help for a few hours on Thursday. I took a long nap this afternoon, though.

In the meantime, most of the coagulated blood from the original fistula has been reabsorbed, but that surgery was back in August! Man! This has been a year for us. Maybe it will be smooth sailing for a while now.

 

Aleta

[Jean]

You and Carl both are way overdue for some smooth sailing. I sure hope you get it and can kind of coast for awhile.

[cassandra]

          

[jeannea]

Wow! That all sounds rough. It sounds like his transplant docs are great. I hope he's back in shape soon.

[cariad]

Must everything be a battle for some people? It always starts with those dreaded words "It's not supposed to do that...." That's when you know it's going to be a wild ride.

Glad things are calming down for Carl, and hopefully for you, too. You've had such an intense few YEARS. I hope soon your biggest problem is how to fill the time you used to spend dealing with one medical issue or another. Thinking of you both! 

[willowtreewren]

Carl actually did a "kind of" day's work today. He took a nap in the morning and a nap in the afternoon. After all, his body needs to use energy to heal that 8 inch incision! 

But he doesn't want the rest of us to get too tuckered out.

What a trooper.

Aleta