Last week, I was asked by the Heart Transplant Team to come into the hospital for another right heart catheter test. The request came from a discussion between my regular cardiologist and the heart transplant team cardiologist. And that discussion was the result of my very low blood pressures which cause me to have multiple daily ‘moments’ of either ‘sit now or fall’. My low blood pressure ‘moments’ have continued regardless of med changes. Therefore, they thought possibly my heart disease had worsened.
That one day at the hospital turned into 4 days as I was then admitted to the Baylor University Dallas Hospital. They were determined to figure out why my low blood pressure was occurring.
I had urine and blood labs drawn each day. All of which were fairly normal for where I am in heart failure. I had chest x-rays that showed an elevated right diaphragm (which it has for years) and some bone weakness to the right collar bone and right shoulder blade. Both of which are compliments of the rads received in ’83 and ’05 for my 2 cancers, Hodgkins Lymphoma and Breast Cancer.
The first right heart catheter test had very similar results as it did this past September. It did not show signs of advancing disease to the right side of the heart as was expected. But what caught their attention was my right diaphragm not moving along as it should with my lung, and one of my pacemaker leads not in the most efficient place.
Therefore, they scheduled another right heart cath with the focus on my diaphragm and pacemaker lead. As opposed to having me just lay on the table, they had me sit up, stand up, and exercise, all the while capturing data. Now picture a catheter tube hanging out of my neck, and the Dr holding it up and away, keeping it sterile. The techs help me to a sit up position, and then stand me up. Well, fortunately, I then had one of my low bp ‘moments’. This allowed it to be recorded and measured. Once I was ready, the group of techs, the doc, and myself in a gown, shuffle a couple feet to the stationary bike. As I was almost there, one of the techs said “Wow, SAT 23.11%! Have you ever seen it go that low?”. They all shook their heads no, and pushed me towards the bike seat. Trying to scoot my butt up on that seat, with a gown blowing open, and a tube hanging out of my neck, whilst having a low bp ‘moment’ was quite a sight, no doubt! I made it, bike pedaled with and without resistance. They took more measurements and shuffled me back to the table. That quick the doc was gone, so I wasn’t getting any info at that point.
Once I was back in my room I had a visit from one of the other docs from the transplant team, who has been with me each day. She told me they were able to identify 3 issues. One - the pacemaker lead possibly being misplaced. The position it’s in is causing my heart to have unnecessary additional beats. This can be corrected. Second - is the diaphragm. It is elevated, sitting well into my chest, and it’s in a paralyzed position. It’s pushing against, and taking up space, in the area of my right lung. It is not helping that lung move and breathe in/out, and is what caused the SAT % to go so low upon the slightest excursion. This is mostly my shortness of breath issue. That’s never going to get better. It has been frozen in place due to cancer therapy toxicity – my friend, radiation. Third issue - my blood vessels are not getting the needed signals from brain to nerves to efficiently move the blood in my lower legs back up to my heart – hence the low bp – also a gift from cancer therapy - my friend radiation, and therefore will not ever get better. She paused, waiting on my response. I asked her, already knowing the answer, “A ‘new’ heart won’t fix these issues, will it?”. She said no, the nerve damage done cannot be corrected – a ‘new’ heart won’t make any of this better. I looked up at her and quietly said, “Shit mother fucker”. She nodded in agreement, and told me that these findings will now disqualify me as a heart transplant candidate. Then she sent me home.
Shit Mother Fucker.
I’m still trying to process this information. It hasn’t been easy. The biggest thing in my life, that could have extended my life, has just been yanked away. I am grieving this loss.