heart infection, cancer, blood clot...

Well, I have to say, I am beat. I have cried all day. First with laughing, as I picked strawberries and laughed for hours at the local Wendy's with 2 dear friends, only to come home to Jim who really thinks he is dying. So, then my tears of laughter of course, changed to tears of grief. Is the heart infection back? Cancer? Blood clot? He can't breathe at times. He's got the shakes at times, and then will feel okay, Etc.

The doc wants him to go to the ER. Jim can't stand the idea of another stay at Passavant. To find what???

Here's a letter we sent to the NIH.

Dear Dr. Fowler and Team:

I am writing on behalf of my husband, James Baldauff, asking to get some direction from you in regards to what our next move should be in regards to Jim's health, if indeed we should do anything.

The last time Jim was there was approximately 4 months ago. The day we came home from the hospital, he was admitted to the local hospital. DX, heart infection. It turns out he got this infection from his port. They put in a pic line and he came home with 6 weeks of vancomycin treatment through the pic line.

Immediately after that, he started to get the chills and felt like he couldn't breathe. He again, was admitted into the hospital, kidneys numbers were rising (2.3). We thought after getting off the vancomycin, he would feel better. Because of the breathing difficulty, they did a series of tests, to find out he had a blood clot in his arm where the pic line was and possibly in the lung. That test was inconclusive. Because of the higher kidney numbers, they would not use dye in CT scan to see for sure. He is now on Coumadin.

Since that time, he continues to have difficulty breathing, but it's intermittent and often accompanies chills in the morning. We believe it's not GVHD related, but seems to have occurred along with some new symptoms, which are, a hard swollen stomach (muscles constantly flexed), more numbness and trembling in hands (which were almost perfectly healed from numbness) and a few times, sweats and shakes. He spends most of his time in bed. His spirits are good despite this.

While you are familiar with our history, I know it's not right there in your memory in the way that we live it. But it's been EXTREMELY TOUGH. What I am asking from you is whether you think you can find out what is wrong with Jim, or is it just time to let it go? We certainly don't want him to die, but it's been 4.4 years of illness and 2.3 years since the Stem Cell Transplant, and many problems. Anyway, could you please advise us. The doctors up here are stymied and we do understand that Jim's situation is complex and sometimes things just can't be determined. However, we don't have to make that decision alone.

We got a reply immediately, I'm sure from their nurse, but here is their reply.

Dear Gloria

Thank you for contacting us and providing the information below.

Certainly, in my opinion, it is not "just time to let it go".
The cancer has remained in remission, and is likely to stay in remission.
The GVHD has been an issue, and you are right to say that James has had a tough course with a lot of cumulative toxicity.
However, GVHD can get better, and the body can sometimes heal old injuries over time.

We would like to help.
Seeing him as an outpatient would likely be too complex to sort out the issues.
We could consider an inpatient admission to check medication levels, order x-rays and any other tests, and to have our NIH consultants help sort out the problem list.
Please let us know if James would be willing to do that.

Sincerely,


Now, I have to tell you. I'm not sure what to do. Jim is not sure either. I do know that I cannot do another round of driving to the NIH, staying in hotel, lodge, Shelley's, living out of a suitcase while the rest of my life falls apart.

That's where you come in. If Jim is willing, and you are willing, can you drive Jim to the NIH and drop him off? You wouldn't have to stay. We will pay for gas, hotel, or whatever.

This is preliminary because I"m not sure what Jim is going to do, but I wanted to put my feelers out there.

I again, ask you to pray for us for wisdom. We don't want to go if this isn't God's will for us, and we don't want to stay if this is what God wants us to do. So, yeah, thanks.



Us