Another blow!

[Stephanie78]

John started having more complications this week. Saturday he had his first "R" infusion. Tuesday he started feeling weaker. Wednesday was a little worse. Thursday even worse. When I got in from work he informed me that he had upset stomach all day. I took his temp and it was 102. I called his nephrologist and they said to come back to chapel hill. We are now here. When he arrives his BP was 180/106 with a pulse of 124. They did an EKG and an ultrasound of the heart. It is not working as hard as it should and enzymes are really high. They believe the heart has now been effected. We are currently waiting on the cardiologist. His hemoglobin level is 6.5 and his white blood count is crazy high (but that could be due to his meds). He hit his toe on the bed a week ago, all of his toes are now completely black and lumpy?!? They seem really concerned about that. His hands and feet have lost all color. He is coughing a lot but scans show no signs of pneumonia.
Has anyone else had the heart involvement?

[Sangye]

Oh man, Stephanie..... Heart involvement is rare but not unknown. It can be pretty bad. I'm hoping they found it early enough where not much damage was done.

I don't know how to explain the black toes unless his platelets are really low. The lack of color in his hands and feets would be due to being severely anemic. I'm glad he's at CH, though. BIG hugs to both of you.

[Brooke]

Sorry I am not of much help. But I hope he gets feeling better really soon.

[drz]

John started having more complications this week.concerned about that. His hands and feet have lost all color. He is coughing a lot but scans show no signs of pneumonia.
Has anyone else had the heart involvement?

Sorry to hear about the set back.

No I have been lucky in having no heart problems show up but many symptoms are suggestive of heart problems so I have been checked at least two dozen times for possible heart problems. I have been warned that a heart attack for me might not feel like a "heart attack" but might feel more like a belly ache or indigestion or worse case scenario no feeling of pain or distress at all (silent heart attack) due to neuropathy so it is good they evaluate the heart carefully. Really low hgb also causes lots of problems and needs to be corrected if possible. Is he bleeding anywhere or are his kidneys really impaired so he can't produce any red blood cells?

Hope things get better soon for him.

[Thakator]

Hi Steph - - In answer to your question, yes - -I have heart involvement. Perhaps not like John's inasmuch as there are several types of heart ailments. Mine has been diagnosed as congestive heart failure and is a secondary result of my having the old Wegs. The Wegs didn't invade the heart and directly cause it, but previous flares and hospitalizations for it directly resulted in the development of atrial fibrillation which, in turn, led to a deterioration in the heart's output to such an extent that it was labeled CHF. And it did so in a matter of weeks. No Wegs, no CHF - - but it's not a case of Wegs itself getting to the heart.
This is not to say that such is what your husband is experiencing regarding his newfound heart problem. But, he has experienced more than sufficient trauma of late to trigger A/Fib and he could thus be traveling a similar path. The good news is that, in some cases at least, the heart can reverse course and get noticably better almost as quickly as it goes downhill. An echocardiogram will tell the tale for this type of heart problem. It will reveal what is called his ejection faction (blood output) and it's a painless test. Hang in there, Ron